Grant 2002

Sunday January 6

Dear Friends,

Grant's been very stable this week — one small fever, but consistently pseudo-awake and occasionally able to answer questions and "say" stuff. Every day I read him some articles from New Scientist. He watched TV for hours yesterday.

He spelled “GET TRANSLATOR” a couple of weeks ago. He's been asking for the translator again this week. I asked him if I could buy one at Fry's (local electronics store) and he said yes. I asked him what kind of translator; he spelled “stick”. Your guess is as good as mine. When we do the feelings board, he consistently picks “sad” or “frustrated.” I don't want to make it sound as though he's suffering, though — mostly he's unresponsive, staring. I don't know how much he understands of his situation; I think he understands pretty much sometimes, but he seldom seems very aware. He spelled “LUV SANDY” a few days ago; it's worse, sadder for me when he's more awake.

The maggots are working very well. I saw them in the vial; they're tinier than I thought they'd be. They look very clean and oddly efficient. They eat the bad stuff, and only the bad stuff, and turn it into a sort of liquidy stuff that's easy to remove. The doc is reportedly happy.

I haven't actually seen any docs since Teresa was here. The only one who sees him lately is the maggot-man.

I have been busy with house stuff (furnace, well, roof, termites all at once!) and getting my on-line classes together, and writing polite-but-firm letters to insurance companies and (now) collection agencies. This is pretty stressful. I actually screamed at someone on the phone last week ... that's why I write. I have written at least thirty letters over billing disputes in the last nine months. Guess how many answers I've received? NONE. Only computer-generated stuff, progressively more threatening. No one writes, apparently. If any of this ever goes to court, I'll have terrific documentation, anyway. The usual scenario is the doctor or lab or ambulance company has already received payment at 100% of the negotiated rate from insurance, but they keep after me for the difference between the negotiated rate and the “real” charge. But only sometimes. The very SAME docs and labs and ambulance companies are usually satisfied with the insurance payment. The other common scenario is I get a bill for some doctor or lab I've never heard of. Grant's had a lot of consultant specialists and operations, and when he goes to the OR, there are surgeons and anesthesiologists and assistant surgeons, and nobody seems to know in advance exactly who's going to be in there! Oh, and in all Grant's back-and-forth to the hospital in November-December I forgot to send back the form to the state that Grant is still disabled, so they stopped his disability payments. I'm sure all these matters will be resolved with time, but they are vexing in the moment.

Did I mention I got a statement from Los Gatos Community Hospital for Grant's six-month stay in the ICU? Insurance paid over $3 million (thank you, Aetna and Adobe!), but LGCH was nevertheless indignantly (“seriously delinquent”) demanding $81 from me. Yes, $81! I cannot say why I find that so funny.

Love, Sandy

Sunday January 13

Dear Friends,

Grant's been stable and awake, watching TV a lot. I tried the eyegaze system with him, having dilated his pupils with Napthcon (an over-the-counter med that dilates my pupils so much I don't use it) — still no go. I could get a huge red eye on myself, but not on him. I tried twice, once with each eye.

I saw MANY maggots Friday. They are well contained, and the dressing is translucent (like scotch tape) so you can pretty much see them squirming around. There are many more than there were, and they are a lot bigger. A few are starting to escape; the housekeeper found some on the floor; she was not pleased. I guess it's a good sign that they're getting so nice and fat, and that they're looking around for new food sources — maybe they've got Grant pretty much cleaned up.

A new semester starts for me tomorrow. I'll be teaching only two sections on campus, and three sections online, so I'll have a very flexible schedule.

Love, Sandy

Friday January 17

Dear Friends,

Grant's been stable all week. He was more alert earlier in the week, however. He wanted me to read to him from New Scientist, so we did that for a couple of days. Yesterday he just wanted to watch Buffy and M*A*S*H.

Betty, the Activities Director at Care Meridian, changed the bird feeder outside his window. She had had a hummingbird feeder out there for several weeks, but it didn't attract any hummingbirds. So she put up a regular seed feeder, and now there are lots of birdies, especially house finches. Grant seems to enjoy watching the birds. He will turn his whole head to look at them. As many of you know, Grant had a pet budgie for many years, and is a bird enthusiast.

Care Meridian has filled up in the last week: there are six guys now. One of them, Herman, got MARRIED in Care Meridian the other night. Herman was injured in an accident, but seems less disabled than any of the other guys: he walks (with help) and talks and eats regular food. A justice of the peace came in to perform the ceremony. Betty made a big cake. Life goes on.

Love, Sandy

Tuesday Jan 22

Dear Friends,

Grant continues stable. He was VERY alert last Friday, and spelled out “GO HOME”. I asked him if he meant *I* should leave and he indicated no, HE wanted to go home. He also was able to stick his tongue out of his mouth, for the first time since he's been sick. However, that lasted about an hour Friday, and he's been somewhat less “with it” since then. I try to get him to practice sticking out his tongue; I call the game “Lick My Nose”.

We've been using the mouth stick. It's a 16-inch rod with a rubber tip on one end and on the other end a U-shaped plastic thing he bites on. He can then trace patterns and point to letters on the letter board — very slowly. I asked him to point to the first letter of the place we associate with Osama bin Laden, and he “stuck” the A. I asked him what UNIX command you'd use for getting regular expressions from a text file, and he spelled “GREP”. Pretty good! I'll ask the names of UNIX text editors next. UNIX command names make good questions, because they're short and too weird to guess.

The maggots are finished now, and we are waiting for insurance approval to reinstate the wound vac.

I'm having some computer problems with the Aptos machine, described below. Does anybody know off the top of your head what's going on? I'm kind of stuck.

Love, Sandy H: 408-252-1135 W: 408-741-2549

Grant is at: Care Meridian 11500 Center Ave. Gilroy, CA 95020 (408) 686-0758

_________________________________________________________________

NEED-A-NERD CORNER: The machine in the Aptos house is having problems. It is VERY slow (unusable), and I keep getting the following messages:

(1) on boot-up: “mep7C.tmp.exe — no disk; please insert disk into \Device\harddisk1\DR1” I don't know what device this is — possibly something to do with the Aptos webcam? I can't find anything intelligible on Google about “mep7C”.

(2) some system files are missing or corrupt — so I insert the Windows 2000 Prof CD and try to reinstall. Then it says the file EUSBMSD.SYS is corrupted and I can't finish re-install.

I did a search, and the file EUSBMSD.SYS is in two places: C:\Program Files\MII and C:\WINNT\system3... (but I don't think the machine is running NT)

The file name may have something to do with USB (Universal Serial Bus) and MSD (Mass Storage Device). “MII” is Media-Independent Interface.

(3) the system needs more virtual memory

I checked our home machine and there is no file EUSBMSD.SYS here. (If there had been, I would have tried copying it to the Aptos machine: the two machine are running the same OS.) So I have a feeling the problem in Aptos is connected to some piece of hardware on the Aptos machine that we don't have in San Jose: e.g., the Aptos webcam. When I looked up “MII” I found a lot of references to remote camera hook-ups. The Aptos webcam hasn't sent any pictures in a couple of months. But the machine performance and the message about virtual memory also suggests the Aptos machine is having some swapping “issues”, no? Could these be connected?

Anybody know about this kind of thing? I am very sorry I do not have more info about OS version, hardware, etc. I can get that info, but it'll have to wait until I go back to Aptos.

Thanks for any advice! It would be very handy if the Aptos machine worked reliably — I could then do school stuff from Aptos.

_________________________________________________________________

Saturday January 26

Dear Friends,

Let me say first: I'm pretty sure the problems with the Aptos machine are due to infection by the NIMDA worm. There are lots of sites with instructions on how to clean it up — I'm going to try to fix it myself. So don't do a lot of work on my problem yet! (And I apologize if you have already.)

RE OUR GUY: Geez, just when you think he's a permanent zombie he starts doing stuff!

Grant has been using the mouthstick to point at letters on the letter board. I asked him some easy questions (UNIX commands, geography, etc.) and then we started “talking” about Shakespeare plays. I asked him the name of the famous prince of Denmark who said “to be or not to be” and he spelled “HAMLET”!

The occupational therapist suggested we try using the mouth stick to punch keys on the keyboard. So I rolled the ERICA machine over, propped up the keyboard, and started wordpad. (In the process I had to remove the little TV monitor, and many tiny attachment parts were disrupted — mostly little metal rings — which I'm not sure I can reassemble. I had no idea there would be so many doodads in there. Sorry!)

Anyway, Grant was VERY interested. I encouraged him to just feel how to punch keys — not to try to compose any message. He is not able to control the stick much, and it is 16 inches long besides. But he did manage to “type” some random characters (mostly hugely repetitive, like “PPPPPPPPPPPPPPPPPPPP”). I asked him if he could hold down “ENTER” to scroll the screen up and “erase” what he had typed. He did it!

I asked him if he'd like a shorter stick, and he indicated yes.

He did extremely well considering he was coughing a lot also.

I've also been asking him various yes/no questions to ping his memory. He seems to remember a lot — things since his illness, which surprised me. I asked him who built the rolling mounting unit for the ERICA system; he spelled “DICK”. I asked him to give the initials of his friend from Germany who visited him on his birthday (last June!) and he spelled “MD” (Michael Daumlung). I asked him to give the initials of some of the nurses from Los Gatos and he indicated “J” and “F”. I asked him my brother's wife's name: he spelled “BAR” (then we stopped because he clearly knew — I'm sure he could have spelled her whole name, Barbie).

He still can't move anything below his neck, or cough or swallow, etc. But I get the feeling that for a couple of hours a day he's sort of ... living.

Love, Sandy

Sunday February 3

Dear Friends,

Grant's got a new toy. It's a big circular switch (about 2 inches in diameter) that he can use to make a doorbell ring. You put some velcro on the back of the switch, and stick it to a velcro strip that you pin to a pillow. You position the pillow so he can hit the switch by turning his head to the side (he does that pretty well now). He can then turn his head to ring the bell and answer questions, call the nurse, etc.

It's been working pretty well, especially as a tool for the therapists. Often he falls asleep on it, though, so then it starts to ring continuously. (The ringing does not wake him up.) So the nurses have stopped using it 24/7.

We've discovered a whole TV channel devoted to tech stuff, mostly computers. It's called TechTV and and Grant will look at it with apparent interest for hours. Some of the programs are actually pretty entertaining. There's this one called the Screen Savers, which is kind of like Car Talk on NPR except the Screen Savers talk about computer problems. The hosts are often very funny. Even the commercials are interesting to Grant, because they are exclusively about new computer products and services.

Last week I asked him what would be the first thing to type if I wanted to write a program in C. He spelled “MAIN”. Pretty good, huh? I also asked him what happened on January 30, 1992; he spelled “MARRY” (it was our tenth anniversary last week).

I asked him if there was anything he enjoyed particularly nowadays. I couldn't get a full answer — he spelled “SMOO” and the fell asleep. Smooching maybe? He always liked the word “smooch”. Smooching opportunities are few and necessarily quite limited, unfortunately, but I do what I can.

Cheers, Sandy

RE: We enjoyed Charlotte's card very much!

Hi Victoria,

I don't know if you saw Charlotte's Valentine's (or, as she wrote “Valintimes”) card for Grant, but it was incredibly sweet and heart-warming. I especially liked her drawing of tall Grant (with beard), and me, and herself, and she wrote “Me and Grant and Sandy together again”. Charlotte's handwriting is so nice now — it's looking a lot like Nate's!

Katie Blink also made a card that said “I had a drem in the drem Grant came home”.

Could you let Charlotte know how much we appreciated her thoughtfulness and give her a big hug for me?

Thanks!

Sandy

RE: We really liked Katie's card for Grant!

Hi Donna,

I don't know if you saw Katie's Valentine's card for Grant. I just loved it. What a sweet kid. She wrote “I had a drem in the drem Grant came home”.

Could you let Katie know how much we appreciated her thoughtfulness and give her a big hug for me?

Thanks!

Sandy

Thursday February 7

Dear Friends,

I had a very interesting talk today with Therese, the occupational therapist. She's been working with Grant on the doorbell, the mouth stick, etc. She showed me a chart she'd made with a grid of TV stations that Grant could choose among by pointing with the mouth stick. I was very surprised to see that she had somehow put in all his favorite channels. I asked her how she know about the more esoteric ones like TechTV and the Research Channel, and she said it was because Grant had spelled the letters out for her! She said she was a bit puzzled at first by “RSRCH” and didn't think there was such a channel, but sure enough, that's how it's spelled in the online guide. She said she wasn't really sure about “FX” either, but included it because he seemed really certain — she was happy to hear that yes, he does like to watch Buffy and MASH on FX in the late afternoon. I had no idea he was paying that much attention to the TV tuning.

I've been reading to him every day from New Scientist, which is his most favorite thing (even better than Buffy and MASH).

I asked him how he controls the video remotely at Aptos, and he said “FIO”. I searched the home machine and sure enough, there were several files by that name. I'll check Aptos tomorrow.

I asked him to estimate how many hours a day he was “fully awake” and he indicated 6. I had a mouse (the alive kind) in my office earlier this week, and told Grant all about it. The next day I asked him if there had been something unusual in my office, and he spelled “MOUSE”!

He is still not reachable much of the time, but everyone is remarking how much more they're getting out of him these days. Even the physical therapist says he's exhibiting new “clonus” reflex spasticity in his arms in the last two weeks. (She said it isn't necessarily a sign of anything, good or bad.)

His wounds are looking great also. The extremely large one is practically healed, and the smaller one is about half the size it was before (pre-maggots), also very clean-looking.

What is going on here? It's like he's decided he's not going to give up.

Love, Sandy

From: Martin Newell

Sent: Friday, February 08, 2002

Subject: Sorry I missed you

Hi Sandy, I called by last night about 6:00 and the nurse told me I had just missed you. Grant does seem quite responsive. I rambled on about work stuff and other things for about an hour and he didn't fall asleep once! Even I was getting bored with me.

I measured him up for a support for more switches that Dick Sweet and I have been discussing. His head is big, isn't it? Has the therapist tried any supports for putting the switch under his chin? I saw a neck brace in the closet that looked as if it had been modified to fit around the trach. It would be good if she could get him ringing the doorbell with his chin, because we want to use a switch there to act as a mouse click.

When I left I asked if he wanted me to change the TV channel, and he said yes. I wasn't able to figure out which channel he would like, so I started going through them. There's a hell of a lot of them. Anyway, I got no response until we got to the TechTV channel when he vigorously indicated “yes!”. I need to learn how to have him use the pointing stick.

Sorry it's taking so long over fixing up these other ideas - it does seem that he is ready to try them. Martin

RE: Sorry I missed you

Hi Martin,

Sorry I missed you too. Betty Bates invited me to a reading by an author friend of hers in Los Gatos, so I was off to that.

I sent an update yesterday re the TV channel picking. There's a special chart for that. Therese keeps in in a manila folder in the cabinet on the right side of the bed, top shelf, with the stick. Isn't it amazing how Grant picks Tech TV with such enthusiasm?

Therese did set up a neck brace, but I haven't seen it in use and I'm not sure how well it works. I could ask Grant — who knows, the way he's been lately I might actually get some info from him!

I asked him the other day if he liked to have visitors and he did a big YES. Sherry Schaefer, his old girlfriend, has started coming occasionally, but you and Sherry and Jim King are the only visitors I know about in the last few weeks. It's too bad it's gone on so long. So many people came when he was comatose and didn't know the difference (he says he remembers nothing of that time). Now that he would know, and might even respond, he's a lot farther away and visiting him is not as much of a priority for people — this is only natural, of course. We've all kind of gotten used to him being sick, and visiting him is not convenient for anybody. I can see how visiting him wouldn't necessarily even be that interesting much of the time, especially for people who have visited before and know what it's like. I'm sure people still care about him, of course, and he never was the sort of person to get lonely. But I think now it would mean a lot to him to hear from his friends at Adobe. It's not necessary to visit — even cards and emails would be good for him, I think. He is awake so much. He seemed to very much enjoy some valentines from the neighbor kids the other day (they wrote “Happy Valintimes Grant”). One kid wrote “I had a drem in the drem you came home.”

I agree that he is ready to try some new communication stuff. Jim King said something about maybe finding some way to amplify the signal from his retina, or maybe using a color monitor to get more selection possibilities so he could use ERICA?

Hope not to miss you next time!

Best, Sandy

Monday February 11

Dear Friends,

Grant has been reading from the portable computer screen. I cat'ed [UNIX talk for the “concatenate” utility] the emails people sent him last April to a text file, enlarged the font size, and put it in front of him. I also set up the doorbell, and asked him to turn his head and ring it when he was ready for me to scroll the screen. He did this for about a half hour Saturday. Today he was even more interested, but the bell is flakey, and Dick Sweet took it home to fix it.

It's great that you all wrote! I think he is “getting” the messages for the first time. I asked him, for each writer, “Do you know who this is?” He nodded for every person but one. He even remembers all the AfterEffects people in Seattle. I asked if he understood the various acronyms and project names and he nodded for all those, too. He read the notes with GREAT interest. I think he was genuinely touched. Write again if you feel moved!

The doctors told us they thought he might not remember stuff that happened in the months before he got sick, but I haven't noticed any gaps. The AfterEffects people's notes made reference to the amount of space their release got on Adobe's web page. I asked Grant if he remembered why they talked about that, and he nodded right away. (He had protested somewhat forcefully that AE should get more space.)

Sometimes we read funny stuff and his eyes change. He can't really smile yet, so I ask him if he's “laughing on the inside,” and he nods. His mouth movements are getting better, BTW. He can stick out his tongue pretty far and pretty consistently now, and his latest trick is to kiss me on the cheek, making a nice kissing sound (the sound is the new part — he couldn't do that two weeks ago). What a sweetie.

I asked Grant if he would like to read other stuff from the screen (e.g., Adobe news, science and technology, humor, web pages) and he indicated YES. If you come across anything you think he'd enjoy, feel free to send it to me as an attachment. 16-point type is good for him; margins not too wide. I can reformat also.

All the patients in Care Meridian are currently sick, EXCEPT Grant, for a change. They have various different things, hopefully not anything Grant can catch.

I have been asking him every day how he feels on a scale of 1 (worst) to 10 (best). He's been picking “5” pretty consistently. Saturday was a “6”; Sunday a “3”; back to “5” today. I was worried about the “3” but he seemed much better today.

Love, Sandy

[Jim Mull sent several emails describing his trip to Austria in December 2001. This is my response in early February 2002.]

Dear Jim,

I am enjoying your messages from your trip.

To think I went to high school in Massena and never knew about the World of Aluminum! I'll have to check that out next time I see my Mom.

My husband is still quadriplegic, can't talk, being tube-fed, etc. He has been medically stable for a couple of months (no infections), but with all those tubes, it's just a matter of time before something starts to grow again. Then it will be back to the hospital.

He seems to have plateau'd at about six hours of semi-wakefulness a day. He can communicate very slowly by spelling out letters in code. But he never “says” much, since the process makes him tired. When he's awake, he answers “yes” and “no” questions by moving his eyebrows, like Groucho Marx . He seems to be himself, with memory and general world info pretty much intact. He also watches TV a lot, so he knows about 9/11 and who Osama bin Laden is, and that the Olympics are on, etc. He looks great. He's in an excellent care facility; the people who take care of him are very competent and attentive, and keep him very clean. They are pretty much all Mexican. One of the nursing assistants is actually a Mexican doctor not yet licensed in the US. I'm glad I know a little Spanish.

I have DSL and a fast machine, but it still takes about thirty seconds to download your messages. I can't imagine how long it would take with a dial-up connection. That may be the real reason those guys are giving you a hard time — maybe you bring Leo's machine to its knees, so he's saving face because he's been defeated in the techno weenie-waving contest. :-) (You see that a lot here in Silicon Valley...) I imagine Leo's probably got a fast line at his school, though, come to think of it. So there must be an even darker Freudian reason.

Anyway, you could always host your own Web site and post the journal there, in one central place, so people can read it at their convenience and not have to download it with the rest of their email. (Your current delivery method is fine with me, though.)

All the best, Sandy

[Jim Mull notified many old Fordham friends. Among them Chjarlie, who lives in Berlin. Charlie had written a note. ]

Dear Charlie,

Thanks for the joke, and for thinking of me. My husband is still quadriplegic, can't talk, being tube-fed, etc. He has been medically stable for a couple of months (no infections), but with all those tubes, it's just a matter of time before something starts to grow again. Then it will be back to the hospital. He seems to have plateau'd at about six hours of semi-wakefulness a day. He can communicate very slowly by spelling out letters in code. But he never “says” much, since the process makes him tired. When he's awake, he answers “yes” and “no” questions by moving his eyebrows, like Groucho Marx. He seems to be himself, with memory and general world info pretty much intact. He also watches TV a lot, so he knows about 9/11 and who Osama bin Laden is, and that the Olympics are on, etc. He looks great. He's in an excellent care facility; the people who take care of him are very competent and attentive, and keep him very clean. They are pretty much all Mexican. One of the nursing assistants is actually a Mexican doctor not yet licensed in the US. I'm glad I know a little Spanish.

I visit him every day for 3-4 hours. It's been over 300 days now. My life is completely changed. Are you getting Jim Mull's journal of his recent trip to Austria? He sends out one email a day — very long and detailed, with photos and lengthy descriptions. We all get to hear about his Aunt Mitzi and cousin Liesl and her husband Fritz, etc. (with photos!). Jim should have been a historian or a medieval philosopher — the sheer THOROUGHNESS of his account shows he's got the right stuff (obsessive-compulsive disorder). The emails each take about a minute to download on my high-speed system. Leo Parascondola is publicly sending out mocking commentaries; it's pretty funny. (Nothing like the Baltimore Catechism exchange, though. I LOVED that.)

I'm sure Jim would be happy to put you on the list. His email is

jimmull2@optonline.net

Congratulations on getting married! A good thing to do, all things considered, in my opinion. You're with somebody for 10+ years — you realize that person has become part of you. You might as well be married and get that stamp of societal approval. It doesn't mean anything that huge, but it does mean something, I think. It's like recognizing finally that this IS your life, and owning it. Another milestone in becoming a grown-up. Give my regards and best wishes to Andrea.

Cheers, Sandy

Thursday February 14

Dear Friends,

Grant was a “5” again today, but I thought he seemed better than that. I wanted to get calibrated about what “5” means, so I asked what was the best he'd ever felt since he's been sick, and he said “7”.

Amy F. from Adobe sent an article from Reuters about how some scientists have found lots of genuine dinosaur vomit. Grant read the article yesterday. Today I asked him whether he remembered what he read. He nodded, so I asked what the scientists had found from the dinosaurs and he spelled “VOMIT”!!

Tom, the director of Care Meridian, was the guy who in December advised me to cancel Grant's wheelchair order, basically because everybody agreed Grant was a goner. Yesterday Tom told me Grant has made far more progress than Tom ever imagined he would, so we should restart the process of ordering a wheelchair.

Love, Sandy

“We believe that this is the first time the existence of fossil vomit on a grand scale has been proven beyond reasonable doubt.”

Thursday February 21

Dear Friends,

Grant's been stable and working hard all week. He's been sweating a LOT — no one knows why exactly, because he doesn't have any fever (in fact, his temps are below normal). He is in a special bed that puffs warm air all the time, so that might be the explanation, though he's been in this bed for months. He feels okay — he said he's a “5” every day this week.

Therese the occupational therapist has him doing 15 repetitions of back and forth head movements (up from 10 last week). And Leeza the physical therapist has been her usual dominatrix self (“GRANT! OPEN YOUR EYES! LOOK AT YOUR LEG! GRANT! MOVE YOUR LEG! ARE YOU TRYING?”); he sweats particularly when he works with her. Maybe he hasn't forgotten the WET WASHCLOTH treatment.

I too have been making him work, reading articles on the computer. Dave Barry's columns on the Olympics are a hoot, especially the one about curling. I think I saw Grant smiling. I also got access to the New Scientist web site, where I can download articles of interest and reformat them for him to read. Today he was VERY interested in an article about the movie AI, which came out after he got sick.

All in all, a reasonably good week.

Love, Sandy

RE: Greetings from Berlin

Dear Charlie,

I fear I don't have many thoughts about this except the most banal: health is a precious gift, people can be incredibly caring, you have to take it one day at a time, and — as you wisely said — you gotta love the world anyway.

I'm just thankful I haven't had a jolt of shock or terror in a couple of months. I think I have aged about ten years; my hair is a lot more gray, and everything is sort of generally droopy. I don't like THAT. I am wondering about what will happen if Grant dies; and I wonder about what will happen if he doesn't. The two scenarios are about equally horrific. There is no prognosis and no treatment at the moment — stem cells might help, but the docs say that's not going to happen in our lifetime.

You have always been someone I could speak frankly with, and there are things I can't say to Grant's friends and relatives without sounding incredibly self-centered, like “This is sure boring sometimes!” or “I can't wait to go home” or “I'm tired of being the grown-up here; when is someone going to take care of ME?” or “Gee, I sure am horny!” And while all these things are true, in a way, I wouldn't trade places with anyone. In the past five or six years (and several years AFTER we married), I finally realized Grant and I had practically become the same person, and we just LIKED being together so much that we pretty much shut out the world. I worried occasionally whether we were indulging in some weird folie a deux with our TV shows and and housekeeping routines and cuddles — whether I was putting all my emotional eggs in one basket. Turns out to have been a reasonable worry. The amazing thing was how much people helped me after Grant got sick — the same people we thought we had been avoiding all those years.

So I am becoming adept at the things Grant used to handle, particularly mechanical and electrical and computer stuff. It's amazing how quickly you learn to use the fancy phone and the cell when you are constantly on the alert for calls from doctors and lawyers and hospitals.

Oh, yeah. We probably will have to get divorced. I may have mentioned that. We have some money and property now, and we will lose it all if Grant requires long-term care. His medical bills are fast approaching $4 million; his care now is about $25K/month, and he may need skilled nursing care 24/7 for the rest of his life. Medical insurance will last about another 3 years. But there are limits to long-term care benefits (200 days/year). And insurance coverage WILL run out. So if we're to keep our second home and my pensions (yes, they take my pension for his care if we're married), we need to divorce. His estate will then get used up on his medical bills, and only THEN (when he has no more than $2000) will he be eligible for medicaid.

I have lots of stuff on the Web. I maintain our department site. I've had an Internet address since 1981; I was net administrator at the last company I worked for. I've actually known about Lingua Franca for several years. (I Google'd you.) Some current data about my activities and work can be found from

http://www.westvalley.edu/wvc/ph/sandybio.html

Grant is in a care facility in Gilroy, about 35 miles from our San Jose home. I visit him every day, so I'm in the car a lot. The best way to reach me is email, since I'm online every day (I'm teaching three online classes). I cry a lot when I talk about Grant, also, and seldom have time to sit and talk.

Enough for now. I hope to hear from you soon. Thanks for writing. I send out an email update about Grant's condition to a large list of our friends — would you like to be on that?

Sandy

Sunday February 24

Dear Friends,

Grant's been stable the last few days. They finally seem to have solved the sweating problem: the tech from the bed company adjusted the bed temperature. Grant seems a lot more comfortable.

Yesterday he “told” the nurse to turn off his fan. He caught her eye as she walked by, turned his head, and looked at the fan. She understood that he was trying to convey something about the fan and asked him if he wanted it turned off. Then he did a big nod YES. I think that's the first time anyone has noticed him initiating communication.

He was responsive with me too — awake and alert pretty much the whole time I was with him yesterday (over four hours). I think he has been a little bored lately. TechTV has its limitations; there are only six or seven programs, so they're often repeated. So when I come, he is eager to see what I've brought for him on the computer, and wants me to read from New Scientist. He often wants me to change the TV channel. It will be nice when he can control the TV by himself. He was EXTREMELY interested in The Sopranos yesterday; it was the episode in which they kill Pussy, and Tony is sick much of the time, having weird vivid dreams. I think Grant really related to that.

I have noticed that when I tell him a funny story, he often moves his head around. He can't consistently make a recognizable smile, but I think the head movement might be his current way of laughing. He said he was a “5” yesterday, but he seemed so much better when I left that he was willing to change it to a “5 1/2”.

Love, Sandy

Thursday Feb 28

Dear Friends,

I'm writing this on Friday morning (March 1). It's now been a full eleven months since Grant's been sick.

This has been a fairly uneventful week. Grant was pretty sharp earlier in the week, but less so the past couple of days. On Monday (Feb 25) I asked him to tell me the date “next Tuesday”. I don't know about you but I always find the beginning of March to come on very suddenly. For me it's not intuitive that March 5 should be only 8 days after Feb 25. Anyway, Grant figured it out. When I asked him if there was anything special about March 5, he spelled out “BIRTHDAY” (mine). That was nice, especially since we never paid much attention to our birthdays. I was not sure he'd remember. He did not know his parents' birthdays (Grant's dad just turned 80); but his parents say that's not surprising, since he never did.

Martin Newell brought in an apparatus that might eventually allow Grant to change the TV channels by moving his head from side to side. Therese, the occupational therapist (the cute Asian one), was very excited. So far Grant has not been able to use the device successfully — he has not even seemed interested — but we haven't yet tried it on one of his “good” days.

I saw a strange thing at Care Meridian the other day. A group of visitors came to see one of the patients. They brought in a mysterious object wrapped in white linen. It was about 5 feet tall. Turned out to be a crucifix. They set it up in the living room and started doing one of those Catholic call-and-response type prayer things (it wasn't the Rosary — I would have recognized that — but it was some kind of litany). The thing I found remarkable was the general cheapness of the sacred object — it was really just a cardboard stand-up poster. It wasn't even 3-D. The patient on whose behalf this was being done seemed embarrassed by the whole thing, and continued to carry on a conversation with another visitor throughout the praying. I do not mean to pass judgment on the praying — these people are suffering, and if I thought I had a lifeline, I'd certainly use it too. It was just curious.

I am tired and low this week. I feel like I've been in combat too long. I was doing a lot of grading this week, and my poor students' papers are discouraging.

TYPICAL STUDENT PARAGRAPH: “Ethical Relatvism has meaning which says that, ones own culture is right. Meaning whatever they may do is morally right according to their culture. This happens because as human beings in todays' society one is sheltered from outside cultures. Experimenting with only their own culture creates a negative out look on other cultures and morals.”

Sometimes all you can say is “HUH???”.

Love, Sandy

Sunday March 3

Dear Friends,

Grant's been as well as he can be. He felt extra good on Saturday (rated it a “6”). I read him an article on open source products and the next day he seemed to remember it perfectly. (I'm a teacher, so I find myself giving him little quizzes.) Of course open source is a subject of particular interest to him. On Saturday Therese worked with him using the headgear switching thing Martin made.

Yesterday I was cuddling him and a little later asked him how he was feeling (using the Feelings board). He indicated “SAD”. So I asked him why, and, using the Alphabet board, he spelled “CAN'T DO”.

I asked him if he had any visitors yesterday and he spelled “KING”. (Jim King had been there.) I asked what they'd talked about and he spelled “ADOBE”. Grant wants to go back to work. Maybe he will, someday. Leeza, the physical therapist, told me yesterday that she has found some reflex movement in a couple of fingers of his right hand. He does not have voluntary control, but any kind of dependable response, even reflex, is potentially useful for operating switches. Stephen Hawking has the use of two fingers (still under voluntary control, in his case); he does okay. Of course we still don't know if Grant will be able to take advantage of what he has, and everything takes forever, but this is better than I expected. I know the smart folks at Adobe can solve the technical communications problems. The big open question is whether Grant will be able to stay well while we wait for the neurons to do what they're going to do.

One day at a time, eh?

Love, Sandy

Saturday March 9

Dear Friends,

I am writing this from Grant's room at Care Meridian. My plan is to show it to Grant before I leave and ask him if he has anything to add or change. This is made possible, of course, by the guys in ATG who got the portable working (I use it practically every day — thanks!).

Grant remains stable this week. He claimed to feel “5” every day — not bad, IMHO. Therese has been working with him using the headgear and she says he's been able to use the right button pretty effectively to change the TV channels. Also, according to Therese, he can use the doorbell switch attached to a neck brace, i.e., another potential input source.

Shannon, the speech therapist, in consultation with Dr. Miner and the respiratory therapist, have jointly decided that he's not ready to use the speaking valve yet. They think it's not safe at this point because whenever they put it on, he coughs it off, sometimes pretty dramatically (across the room, out the door). They don't try it very often, though. Grant often tolerated the valve well when he was at Los Gatos, so I'm not sure whether anything has changed with him physically. Maybe Shannon is inexperienced and perhaps overcautious. But with someone like Grant, you do literally take responsibility for his LIFE when you use the valve. There is a little balloon that you have to be extremely careful to deflate and re-inflate. If you forget or don't do it right, he doesn't get enough air. Jeri at Care Meridian showed me how to do it, but I was always too timid to try it on my own. So I understand Shannon's fear.

I'm going to show this to Grant now and ask if there's anything he wants to add. ...

Success! He spelled “HI EVERYBODY”!

Love, Sandy

Thursday March 14

Dear Friends,

Grant has been coughing a lot the last couple of days, and feeling “4” rather than his usual “5”. I think he is tired from the coughing. Yesterday he was pretty grumpy and unresponsive. Today he was somewhat better.

I have been reading to him from a book called The Innovator's Dilemma that someone left for him last April (Dick Sweet, maybe?). He seems quite interested. The book has a lot of history of the computer industry. Since Grant's been working in computers since 1971, I think it brings back a lot of memories for him.

It will be a year soon since Grant got sick, and I understand this means he will soon be terminated from Adobe because of disability. I hesitate to tell him; I don't think I will unless it's necessary. I understand that it's nothing personal, but I think it would be tough for him to hear anyway (assuming he understands). Adobe people have been incredibly supportive and helpful to us in the last year, and I know this is just a formality and he is still in your hearts and you won't forget him. His insurance coverage is not affected, except that we'll pay the premiums now (not a problem), until COBRA runs out. His LTD and life insurance are also unaffected, I believe.

I have had a rough time in the last few days, dealing with lawyers, beginning serious talking about divorce (to ensure that we salvage at least half of our estate if he needs to go on MediCal). The lawyers want to draft a property settlement, and they also want me to make a will, do a physicians' directive, etc. I wish I were a better Buddhist so I could feel a little more comfortable in the “not-knowing” place.

Love, Sandy

-----Original Message----- From: Roger Hall

Sent: Saturday, March 16, 2002 7:12 AM

Subject: Fall Schedule

Hi Sandy--

Been meaning to ask you about the fall schedule. Last night at Henry Liem's philo club paper, Barbara said that she thought you had made it out.

Henry's talk got a little preachy. Don engaged him in some “lively” dialogue. Both Don and I thought he was cutting off any kind of “western” criticism, maintaining that only through eastern mysticism could you find “true knowledge” and “absolute reality” (whatever that might mean), and that any kind of western “logic-chopping” criticism showed that you had not found either. Do I detect a little bit of question begging here?

I left a copy of a comp book in your mail box. I had received two of them from Wadsworth. It's a critical-thinking type book that focuses on philosophical issues, laying out and analyzing the arguments that make up the issues.

Regarding your update on Grant yesterday, that's a hell've a deal if you have to get a divorce to help the person you love. Makes us aware that there is something fundamentally wrong with the social structure.

Best, Roger

RE: Fall Schedule

Dear Roger,

I put you into the fall schedule for one logic class — we only got 14 sections for Fall. (There will be 17 sections in Spring 2003, though.) I don't remember when exactly — I believe MW mid-morning. We're going to a new 16-week schedule in the Fall and most classes will be either MW or TTh. No more Friday classes.

I've been thinking about unthinkable stuff (contradictions etc.) and how the Buddhists say you have to learn to live with contradiction (you're supposed to not pin down in words, “not-know”, and “not-name” and let “everything be at once”, e.g. koans) — maybe that's like the phenomenological epoche (a concept I have always found mystifying). I find myself having to be in that place (whatever it is) all the time now: both holding on AND letting go, hoping he'll get better AND giving up hope. It is almost a physical skill, like learning to surf. I guess for Buddhists it IS a physical skill. Anyway, if you insist on the law of non-contradiction there, your head will explode. None of which is to defend Henry, BTW — he is still, IMHO, sloppy and lightweight.

Cheers, Sandy

Sunday March 17

Dear Friends,

Grant's been sick the last few days — tummy problems, some messy accidents involving the colostomy bag. The nurse Pas noticed he seemed to be in pain Saturday morning. She was worried and called in the mobile X-ray people. Pas thought there might be some kind of obstruction. Grant also felt bad and “SAD” — said he was a “3” yesterday, and felt sick. Today he seemed better (chose “4” and spelled “LOVE YOU”), and the X-ray didn't show anything conclusive.

The “Jesus-Loves-You” doc hasn't seen him in at least a week. Compared to other medical scares we've had, this was no big deal (I hope), but it had me going.

Friday Grant read for a whole hour from the computer and used the doorbell to signal page-turns. It worked extremely well!

Love, Sandy

Grant Sunday March 24

Sunday March 24, 2002

Dear Friends,

Grant's been feeling less well this week. He indicates he is having trouble breathing, but does not want anything done about it. The treatment involves putting a tube down his throat with a suction device to make him cough; he really hates that. So he says “no” to suction most of the time. The exploding colostomy bag continues to be an issue.

He's been responding some every day. Friday was another big reading day. Therese figured out a way to enable him to scroll the screen in MS Word. She positions the cursor low on the slider bar to the right side, then takes the ball out of the mouse so it can't move. Then she attaches the mouse to his head, so one head movement activates the down motion. Clever girl! Grant still doesn't have a lot of head control, though, so when he pushes on the mouse, the file scrolls all the way to the end. But it's something. Therese is psyched; she even sewed a blue vinyl upholstery cover for the headgear thing.

Keep sending reading materials if you come across something he'd like!

Love, Sandy

-----Original Message-----

From: Sherry Schaefer

Sent: Tuesday, March 26, 2002 4:23 PM

Subject: RE: Grant Sunday March 24

I hope Grant begins to feel better this week. The last two reports did not sound very good at all and made me feel very sad for him and you.

I hope you got my voice mail message on Saturday saying I couldn't visit on Sunday. The rain tossed all my plans into the air and I was also very anxious about Winnie cuz he decided he no longer wanted his grain, pellets and assorted supplements. As he loses weight very easily, I decided not to wait any longer and had his vet out on Saturday. The good news is there's nothing wrong with his teeth or mouth or any other parts. After I thoroughly cleaned and scrubbed his manger and stopped that supplement, be resumed eating his food. Whew!

I hope to visit in mid April, perhaps 4/14 or 4/21. I'll keep you posted. Until then, you are always on my mind, always in my heart.

xoxox, ss

RE: Grant Sunday March 24

Dear Sherry,

Yes, I got your message re not being able to visit. That's okay, no problem. I had been telling Grant you were coming, and he was getting ready by practicing his kissing. I'm not sure he remembered on Sunday, though. It would mean a lot to both of us if you came — there are very few visitors now compared to last year. I don't think anybody besides me has been in for a couple of weeks.

Yeah, things are still really sad. Yesterday Pas, the little Mexican nurse, asked if it would be okay if people from her church came in to read the Bible to Grant and pray “for a miracle.”

I am thinking lately that people just aren't made for this sort of protracted suffering. If we were still living in caves, Grant would have died right away and I'd probably be married again or at least having some kind of life again. It's heartbreaking even on good days, because he's just not all there anymore. The other day I happened to pick up my copy of the St. Matthew Passion by Bach — I went to a performance by my old choir and took the score to follow. I found a Post-it Grant had written to me nine years ago (the last time I sang the piece). In our choir people take turns bringing “treats” for break time, and someone had called to remind me it was my turn. Grant took the message on the Post-it. The caller had said I was to bring “finger food” so he illustrated the message by drawing (very realistically) a bunch of cut-off fingers on a plate. It made me burst out laughing and then it occurred to me that THIS was the Grant we knew and he's just gone. He is still delightful in the cuddly-bear way, of course, but that's only part of what he was and I miss it all and I don't think there will ever be another like him and when I start thinking like this, I can't stop crying.

My group messages are far more upbeat than I feel most of the time. My doctor has doubled my Prozac dose twice now. I don't want to seem all needy, and anyway nobody can give me what I feel I need (him, complete). Most people have moved on, Grant isn't flavor of the month anymore, and in fact Grant's parents have told me they think it's time I moved on. But seeing him is still the highlight of my day so I keep going down there.

Gee, this is going nowhere. Sorry to ramble. Thanks for reading this.

Sandy

Mail road dues bill to San Jose

Hi Vaiva,

I don't know if you are still involved with the road association, but if you're not, could you pass this on to the right person?

For some reason the Aptos post office has stopped delivering mail to our box, so we haven't gotten anything about the road meeting, etc. this year. I want to keep up the payments for our road dues, so could you send the bills to me at our San Jose address:

Sandy LaFave 5073 Shady Ave San Jose, 95129

Grant is still sick. He has never come home, in fact. He is in a long-term care facility, quadriplegic and unable to speak, with tubes everywhere. I am sort of managing. I feel like I am walking around with an invisible hole in my heart the size of a cannonball. (Thank God for anti-depressants.)

Hope all is well with you and your family,

Sandy LaFave 5921 Aptos View Road

Thursday March 28

Dear Friends,

Grant's been feeling better the last couple of days (consistent “5”). They changed his trach and found the old one was defective, so maybe that's why he was having trouble breathing. He's been very responsive, working with Shannon and Therese. From the feelings board, he says he's BORED — you know he's feeling better when he picks that!

Everyone is eager to begin doing more with the headpiece and the computer, so he can control more of his environment without help. Therese is going to talk to the people at Care Meridian about getting him a phone line, so we can hook the computer to the net. He needs cursor control via the headpiece, but I gather that's in the works.

He's been getting a big kick out of Howard Sidorsky's joke mailings (me too). We've been doing a lot of reading using the doorbell as a page-turn signal. I've been scouring the net for short fiction to download for him. The usual high-school English-class things (O. Henry, Saki, Mark Twain) are online, but he's not very interested in those. I don't know — is there downloadable short fiction of the Tom Clancy /John Grisham techno/macho detective/spy/thriller genre?

Love, Sandy

-----Original Message-----

From: Matt Foster

Sent: Friday, March 29, 2002 5:14 PM

Subject: Re: Grant Thursday March 28

Hi Sandy,

Does Grant like Science Fiction?

Here is the web page of a favorite author of mine, Terry Bisson. He's smart and competent and knows it but he's not arrogant. On his web page there are a number of short stories and articles. You'll have to poke around to find the ones appropriate for Grant.

http://www.terrybisson.com/

And here is a link to another short story by another smart and competent author, though Orson Scott Card is arrogant and that diminishes my desire to read most of his work. The novel _Ender's Game_, though, is exceptional. This link is to the original short story upon which the novel is based. The short story was good enough that it made me want to read the novel.

http://www.hatrack.com/osc/stories/enders-game.shtml

There is a menu at the top of the page with some more short stories. I don't know anything about them.

Finally, I found the Terry Bisson link off

http://directory.google.com/Top/Arts/Literature

I don't know if there is anything good there. Yahoo might have something similar.

Say hi to Grant for me.

Matt

RE: Grant Thursday March 28

Thanks, Matt. I have my students read Terry Bisson's little gem “Meat in Space” in my Philosophy of the Person class. I forgot he had stuff online! Grant does like science fiction.

Best, Sandy

Tuesday April 2

Dear Friends,

It's been over a year now since Grant's been sick, so I guess I'd better start putting the year in the message somewhere.

There's actual news, for a change. Leza, the physical therapist told me yesterday that the plastic surgeon (maggot man) — the person who's been in charge of Grant's wound care for the past few months — has finally said the wounds are healed enough that Grant can safely sit in a chair. This is a very big deal. It means Grant can leave his room and maybe even wear regular clothes. I told Grant about it and he says he is eager to look around the Care Meridian house — he's not yet been in the kitchen or the nice living room.

It will take some time, of course. For one thing, he doesn't have a chair. In December when things looked really hopeless, Dr. Miner told me I might as well cancel the wheelchair that was still in the process of being custom-built for him. When I called to cancel in December, the wheelchair guy assumed Grant had died, so he put the unfinished chair into storage. Now we have to start the process of ordering again, getting insurance approval, and finishing building it. But we can use a non-custom chair for the time being. First he has to practice just holding his body up, because he's been down so long they expect just sitting upright might make him faint at first.

Last Friday he laboriously spelled “MUST BE A DREAM”. I've got to say, as a philosopher, that that's the first I've ever heard of someone REALLY having Descartes' question of the first Meditation. I couldn't bring myself to tell him he's not dreaming. So I replied “Maybe it is.” I still feel sometimes that I'm going to wake up some morning and find him next to me and say “Honey, you won't believe the dream I had.” But that waking-up scene only happens IN MY DREAMS. Anyway I figure if he thinks he's dreaming, it might be because what's happened to him really is pretty unbelievable, and maybe the thought that it's just a dream is a kind of consolation for him. I've always been drawn to the pragmatic theory of truth.

Love, Sandy

[Charlie from Berlin had written to suggest books on tape.]

RE: Books on tape

Hi Charlie,

Yes, you're right that there's a lot on tape. We have lots of books and stories on tape (and music, of course). I offer him tapes every day and he's not interested. I think it might be because when he was in the busy ICU, the nurses would sometimes just leave the headphones on for many hours, sometimes all night, and not change the tapes, and he ended up being very uncomfortable because he couldn't control his head movement and he'd end up lying on the devices for hours. I don't know what his problem is now, but he just doesn't want the headphones on. Of course he doesn't need to wear the headphones — we could just play the tapes through the speakers. He has his own room, and it wouldn't make any more noise than the TV. I'll try that tomorrow.

I want him to read, too. We always play the TV with captions on, and I often read aloud while he is looking at the words on the computer screen, so he can get input via two senses at once. Brain injuries have weird effects: it's very possible he has problems processing speech or music but is able to read perfectly, for example (or the other way around); so the therapists try everything at once on the theory that at this stage, you don't know what gets through and what doesn't.

My sister Kate (the one that was in the convent) is visiting this week; it's good to see her.

Sandy

Tuesday April 9, 2002

Dear Friends,

Grant's been very stable this last week — consistently “5” and even a “6” one day.

We watched the video Shrek one day and the next day I asked him what we had watched. He spelled “SHREK” (all the letters, anyway, though in an unusual order — his spelling has always been creative); then I asked him what kind of creature Shrek was, and he spelled “OGER” (SO cute).

His leg paralysis has gradually changed. At first his legs were completely flaccid, and I could bend them easily. The physical therapist said that's because his brain wasn't sending ANY signals down to his legs. Now his brain is sending half the signals — the ones that tell the muscles to extend — but no signals to tell the muscles to relax. So his legs have gotten really stiff and spastic over the last few months, and his right foot has started to turn inward. The medical people are a bit concerned about that. When he coughs, he kicks his legs straight and they just STAY that way. Then his right foot gradually starts to fold underneath the left one, and it's very hard to straighten out his foot because his knees just won't bend. The concern is that the foot will fold that way permanently, and then the only way to correct it is by a big surgery. So they're getting a foot specialist in to have a look and probably order some special new splints.

His arms haven't changed; they still don't seem to be receiving any signals.

Yesterday the San Jose paper ran a big positive article about Adobe and Frame and XML. I read it to him and he seemed very interested.

He has had several episodes of rapid involuntary eye blinking in the last few days. Some of you have seen this before. Nobody seems to know what it is. It looks just like REM sleep (and lasts about the same amount of time) but, weirdly, his eyes are open and he can respond appropriately while it's going on. The nurses seem puzzled but not overly concerned, especially since it always passes within a few minutes. It's clearly a “neurological event” of some sort, but that could mean anything (sleep is a neurological event).

The nurses told me a couple of guys had been in to see him one morning this week. They were marvelling that one of the guys looked “just like Munsey” (for a time the nurse Pasqualina thought “Munsey” was Grant's first name and got the others in the habit of calling him “Munsey”). “Does Munsey have a brother?” they asked. I asked Grant who it was. He indicated Martin and Dick Sweet had come — but either one could be Grant's brother, IMHO!

Love, Sandy

Tuesday April 16

Dear Friends,

Since I see Grant every day, I guess I don't notice changes. I suppose this is like being a parent: you see your kids every day, and they're growing, but it's not like you see a daily or weekly change. And you certainly don't write to your friends every week about how much little Jennifer has grown THIS week — yet she did grow. I feel the same way about Grant. When I see him now, he is really quite changed from a year ago. He is awake all day pretty much every day. He occasionally uses the door bell to call the staff and when they arrive, he makes requests using the mouth stick. I made a new menu of phrases for him to select with the mouth stick, including “It's nice to see you!” and “I love you”. He chooses both of those consistently. He also gave me some input about phrases; he asked me to add “VOLUME” and “FIX LEG” (i.e., straighten the right foot so it doesn't stay curved in). Today he said he felt “low” and seemed grumpy. He was coughing up some of his feeding today also. But it's been a fun week.

Therese the occupational therapist has him using the original “soft” headgear (the switch attached to a molded pillow) every day now, for six hours at a time. This is instead of the unit with the big square foam pieces. Until today I had not realized the reason for the change: it's that he is so much STRONGER now with his head movements — the other unit isn't enough of a challenge. The switch can now be a couple of inches from his head, and he can reach it when he wants to (unlike a couple of months ago). The soft unit is also more comfortable than the one with the two bolsters.

He's not a happy chappy yet — he still often chooses “SAD” on the feelings board — but today for the first time he selected “STRONGER”.

Love, Sandy

[I wrote Martin asking aout the switch software.]

Anything happening with the switch software?

Hi Martin,

Therese is eager to start him working with the computer switch interface; she asked me about it again today. She thinks he's ready. Any progress?

I'm sorry to pester you because you've done so much already! Therese wants to use the software to reinforce the exercises she's doing with him, in addition to giving him a communication channel. She is concerned that he has “learned helplessness” and wants to change that.

Cheers, Sandy

-----Original Message-----

From: Matt Foster

Sent: Wednesday, April 17, 2002 6:19 PM

Subject: online books

Hi Sandy, I came across a science fiction publisher that publishes completely a handful of their books online.

http://www.baen.com/library/

At least one of them is a collection of short stories.

Agent of Vega

It might be worth checking out. Matt

RE: online books

Thanks, Matt! I really enjoyed the webmaster's thoughtful rant about the online vs. pay-to-read issue, too!

-----Original Message-----

From: Matthew GUILLEN

Sent: Saturday, April 20, 2002 2:50 PM

Subject: The prole palate

Really, Sandy. Canned Salmon to fresh? Glad you're doing well otherwise. Take care,

RE: The prole palate ... it didn't last.

MATT GUILLEN!!!

I am actually having the worst year+ of my entire life right now! My genius husband, whom I adore, was taken ill last year (March 31, 2001) with sudden unexplained brain stem encephalitis, and since then has been quadriplegic, on tube feeding, unable to speak (has a trach), etc. He communicates by blinking, and tragically, knows what's going on and can't DO anything. I didn't put that on my web page.

I am SO tired of being a grown-up.

Sandy

-----Original Message-----

From: Oliveira Sean

Sent: Friday, April 12, 2002 3:56 PM

Subject: Hello!

Dr. Lafave,

Hello! It's Sean Oliveira. I haven't spoken to you in quite some time and decided that I should write and say hello etc. etc. In order to get your e-mail I had to go to the West Valley site online. I was just pouring through all of that stuff, looking at pictures and whatnot. Sometimes I really miss my West Valley days. I miss going into your office (and Mr. C's) and spending time talking about the club, journal and philosophy in general. When I wrote my cover letter to get into grad school I found that I spent more time talking about what you and Mr. Ciraulo taught me at West Valley more than anything else. As you know, Nathan lives up here and Wolfgang came to visit. We all went walking and all we could talk about were those days.....it was like a bad Bruce Springsteen song that you know is terrible music but you are forced to sing along anyway (and you feel good doing so). I have heard about what has happened in your life. I wanted to express my sympathy. I have no words, and the truth be told, I probably don't come close to understanding what it must feel like on a day to day basis or even in general. I can only say I'm sorry that this has happened and sorry that I have taken so long to contact you (someone who has done so much for me as a person and philosophy student). If you need anything at all---let me know. It doesn't matter what it is, if it's in my power I will do it. I am getting a car soon and only live over the hill in Santa Cruz so don't hesitate to call on me (831)247-7857. As for me, I can't say I am totally flourishing in my life. I am getting my masters here at UCSC (I plan on writing my thesis on one of two things: The status of music as a language in Wittgenstein, or how our aesthetic reactions can inform us about our ethical intuitions). It is fun and rewarding (alot of work of course), but I still miss the days when philosophy was nothing but introductory classes, i.e. when I wasn't specialized or when there wasn't pressure to specialize. I'm not sure that I want to go on to be a professor or not....a part of me wants to build things (and do my research, write and paint on the side), another part thinks that all I can do in the end is be a teacher of some sort. I don't know, enough about my gripes. I broke up with Linda a year ago--we wanted too many different things---and she is doing really well in astrophysics (the science kids always get to go on cool internships). When I got my BA I travelled the country for a year and saw many things I wanted and didn't want to see. (I got to swim in Walden Pond). Overall things are good for me. Please write me back and tell me how you are, if there's anything I can do for you and if it would be o.k. next time I am in town to drop by your office and say hello. Best wishes, and thank you again for everything you have done for me---it has really counted in my life,

your student always,

Sean Oliveira

RE: Hello!

Thanks for writing, Sean. It means a lot to me.

Let's have a cup of coffee sometime.

Sandy

Monday April 22, 2002

Dear Friends,

Grant has been more alert than ever the last few days. They have rearranged his room in preparation for moving in another patient. He says he doesn't want a roommate and is definitely pissed off. The room is far more cramped now. (I think a roommate might not be a bad thing in some ways, but you know Grant.)

He is more bored and frustrated and depressed. He's been moved right next to the window and he looks outside a lot.

Now that his wounds are so improved, he feels more pain when they do the wound dressings so they are giving him pain meds.

Yesterday morning they changed his Foley and at 6 PM I noticed there was still no pee in the bag, so they changed it again and finally got some results. They are going to be watching that now, of course.

They have started sitting him up in the bed with his legs down. He is not supporting himself; they hold him up. The purpose is to get his blood pressure maintaining itself normally with all that blood rushing into his legs for the first time in a year. They've done this twice in the last week. He is doing okay with that. He can maintain the position for 8-10 minutes.

Yesterday he said he was “SAD” and “AFRAID” and when I asked why, he spelled “DEATH”. I started to cry, and then he did too. I tried to reassure him that whatever happened, he would be okay: he is surrounded by love, and nobody will let him suffer needlessly. (I do not know if I believe that; I hope it is true.)

It is very easy to be with him nowadays because I CAN be with him — it's definitely HIM now. For the same reason, it's now very very hard, because I can see him suffering in a whole new way and it breaks my heart.

Love, Sandy

[I wrote to inquire about EasyKeys.]

Can my husband use your system?

My husband was a principal scientist at Adobe Systems. He is very knowledgeable about computers, but now quadriplegic and unable to speak. We have tried both ERICA and EyeGaze systems but neither work for him — his “red eye” is too hard to detect. Does your system use similar technology so we would probably have the same problems?

Thank for answering this. He has been this way for over a year now and is very frustrated with other alternatives (letter boards, Morse code, etc.).

Sandy LaFave

Sunday April 28 2002

Dear Friends,

Grant has a serious systemic infection and things look bad.

Sandy

-----Original Message-----

From: James C. King

Sent: Monday, April 29, 2002 10:50 AM

Subject: Grant Sunday April 28 2002

Sandy: This note surprises me, since everything seemed kind of business as usual when I was there on Sunday. Did you get the lab tests back and they were bad?

RE: grant: Fwd: Grant Sunday April 28 2002

Yes. Dr. Leung called after everybody left and told me it's “the beginning of the end, God loves you”. I was not surprised — Grant's been low all week, and there was obviously a large-scale bladder infection a couple of days ago. The news was that the lateral bedsore (the one they used the maggots on) is getting worse, is infected, and the infection is probably going everywhere. He is becoming “septic”. The nurses all hugged me and told me they were sorry. They were crying too. I spoke with Grant's parents last night just to re-affirm that we all were still okay with the DNR.

Sandy

Monday April 29, 2002

Dear Friends,

Sunday night around 7:00 PM Dr. Leung phoned Care Meridian and asked to talk to me. Grant had some really scary-looking pee (like vanilla pudding) one day last week; they changed the Foley and the pee immediately looked a lot better. Dr. Leung said Grant's urine test showed bacteria, but not at worrisome levels (!), because everybody who has a Foley catheter for any length of time has this kind of bacterial “colonization”. But, he said, Grant's lateral bedsore was getting worse, was tunneling, and has green pus in it — the same green pus that was coming out of his trach and also appeared in his eyes a few days ago. The concern is that the wound infection will spread to the sinovial fluid around the joints, and then into his whole system. The bedsore hurts him now and they think it is causing new violent spasms in his right leg. These hurt. Grant gets all red in the face and his right thigh muscle goes completely rigid. When they ask him if he wants something for pain, he says yes (unusual for him). Dr. Leung said he was very worried, and that it is “the beginning of the end, God loves you.” The nurses were all crying and saying they were so sorry. The nurse Pasquelina told me the concern was that he is getting “septic”. I came home, called Grant's parents, emailed you all, and cried all night.

Monday I went to Care Meridian with a lot of trepidation, expecting Grant to be visibly worse. He wasn't. To me, he looked a little better than Sunday. He still doesn't look sick — he has good color, his eyes are clear, and he seemed somewhat more alert. He indicated he felt the same (“3” out of “10” — the same number all week last week). The physical therapists sat him up in the bed for 35 minutes — a new record for him. His pee looked fine. He wasn't coughing up any more than the usual amount of stuff, and it wasn't any new color or thickness. His leg spasms were noticeably fewer, but still painful enough to require Vicodin. I saw the wound dressing change, and the lateral bedsore doesn't look any worse from the outside (nothing like I expected from Dr. Leung's account). I didn't see any swelling or green goop, and the hole gets smaller all the time. They've been expecting the wound doc to show up since Saturday, but he hasn't been there yet.

I have to say I am a little confused.

They did a CBC test (white blood cell count) Monday. I hung around until after 7:00 last night waiting for the results, but they didn't arrive. That test will tell the extent of the infection. If he's got something they can treat with antibiotics, they will give him antibiotics through his G-tube. Vancomycin is out of the question now because it wrecked his kidneys last fall. He will not get anything intravenously because his veins are so worn out he would have to go to the hospital to have a line inserted by a surgeon, and we've decided no more hospitalizations.

Meanwhile, Grant is still watching TechTV and listening to the Harry Potter books on tape. He even did some reading on Saturday. After seeing him yesterday, I slept a lot better. I don't know what to think of Dr. Leung. I probably shouldn't pay too much attention to him; he doesn't even see Grant that often, and I suspect he was reacting to Pasquelina's alarm when he spoke to me Sunday.

Still, the wound is definitely expanding underneath, and he is still very vulnerable because he has numerous potential infection sites and not much resistance.

Love, Sandy

Wednesday May 1, 2002

Dear Friends,

Grant is still not showing any obvious signs of sepsis — no fever or swelling, good color, etc. He is still having pain in his right leg and feeling generally “YUCKY”, though. And he wasn't very alert when I was there today, though the nurses said he'd been very awake earlier.

The CBC was almost normal. I don't know what the numbers mean exactly, but the upper limit of the “normal” range is 11.0, and his number was 11.1. His platelets are slightly high also. He's got something, but it's still a little something. They are not treating whatever it is, on the theory that he seems stable and they don't want to unbalance anything else, and he may get over it himself.

They took a photo of him sitting up on the side of the bed last Friday. I sent it to Grant's dad in San Diego. Clarence will scan it and send the bits back and then I'll post it on punkalunka.org. It's really cute, I think — as adorable as the pony picture. You'll be surprised how much he still looks like himself.

Thanks for all your wonderful messages of the past few days.

Love, Sandy

Saturday May 4, 2002

Dear Friends,

Grant was alert as can be today. Yesterday he sat for 45 minutes. Today he turned his head back and forth 47 times with no delay. These are both new records. Therese says he seems to be making great progress since he's been sitting up. I know he is excited about the progress being made on his communication devices.

The plastic surgeon says the wounds are indeed not healing and one is getting bigger, but the wounds are NOT infected. Still, he may need surgery to close them. I am not opposed to that, especially if the dressing changes are hurting him.

He still says he feels “3”, but today he gave us a lot of information about why. He has pain in his legs, but he says it is a achy, dull pain and feels like muscle cramps. He also says he feels like it's hard to breathe, though he does not seem to be in any unusual respiratory distress.

The picture of him sitting is at

http://www.punkalunka.org

Is that cute or what?!

Love, Sandy

-----Original Message-----

From: Dick Sweet

Sent: Tuesday, May 07, 2002 5:15 PM

Subject: EZKeys software

Hi Folks,

Just an update on the accessibility software that I found (the website at www.words-plus.com implies that it is the software that Stephen Hawking uses).

I've rented the software along with DECTalk for three months. It was supposed to be here today, but there was a UPS screwup in San Fernando, CA last night and it didn't get on the truck. It should be here tomorrow.

You can download the software from their website, though it only runs in demo mode without the dongle (which is coming tomorrow). I've played with it quite a bit, spent some time on the phone with their tech support folks, and read the manual. I feel pretty knowledgeable about the program at this point. It can be run in a number of different modes. The one I'm suggesting we start with is the “single switch” mode. Grant can use the switch that he already has as the input device. The California rep for Words+ is going to be in Gilroy during the week of the 20th on other business and will come visit Grant with a number of other switch alternatives to try out.

The current software only runs on Windows98, but an XP version is in beta. Sandy and I installed the code onto Grant's tower machine, which is running W98. Sandy had some questions about configuring fonts and sizes, which I now know the answers to (in short, the software is VERY configurable).

I'd like to find a time when Sandy and Therese are going to be around and go see about training Grant in the use of the software. In addition to allowing typing, the software allows canned phrases to be spoken, makes “page up” and “page down” buttons accessable, has two different mouse control paradigms and a number of other things.

As to finding a time, I'm available Wednesday afternoon and all day on Friday. Thursday is not a good day for me, nor is Saturday. Sunday is Mother's Day, which suggests I stay in town :^). I'm assuming that I'll get the program on Wednesday morning. It would be a good idea to test it out at the office before I came down to Gilroy, but this wouldn't take more than an hour or so. This means I could get there some time after 2:00. To coordinate with the OT, Friday might be better (I have no idea of her schedule).

Sandy, let me know what day and time works for you.

Dick

RE: EZKeys software

Hi Dick,

This is great. I'll be at Care Meridian today (Wednesday) after 3:00 PM. Any time Friday is also good for me. I don't know Therese's schedule but I can try to find out today.

If you train me, I'm pretty sure I can train her. She is a smart user.

Tomorrow (Thursday) Grant is going to the hospital to get a CT scan on his hip, so he won't be around in the late afternoon anyway.

Thanks so much!

Cheers, Sandy

Saturday May 11, 2002

Dear Friends,

Grant's been “3” all week this week. He doesn't feel good and he's not very communicative, but at least he's not getting worse.

Thursday he had a CT scan of his right hip to try to figure out what's happening with that wound, so they can decide about whether to do a surgical close. The Care Meridian people made him an appointment for 4:00 PM at Saint Louise Hospital in Gilroy. The ambulance came to get him and I followed in the car, but it took quite a while before we could find anyone at Saint Louise who had a clue why we were there. It was kind of funny. The X-ray department hallway was suddenly crowded with this big immobile wide-eyed guy in a gurney, three EMTs, and me. The staff had no order to do the CT, but we obviously weren't going to leave, because the ambulance had round-trip orders and had been told to wait. So we held our position in the corridor, like protesters, until the orders got faxed in. Things went very smoothly after the orders arrived and Grant was back at Care Meridian within a hour and a half.

Grant's been sitting up for 20 minutes at a time this week — not as long as last week. He is tired and says he is having pain and shortness of breath. Dick Sweet has set up a new communications system (EZKeys), and Grant is starting to learn to use it. It works with switches (one switch currently), but you can do anything with it, and it's a much more elegant and robust interface than the eyegaze system. Grant says he is interested in using it, but he is awfully tired lately, so there have been no dramatic developments.

Leeza says that Monday they're going to wheel him around using another patient's wheelchair. The other guy (Floyd), who is also a big guy, is currently bedridden and has very graciously consented to let Grant use his chair. For those of you have known Grant a long time, don't you think it's kind of karmically interesting that this guy is named Floyd?

I have only one more week of class, then finals, then three months off! It will be nice to have a little more spare time. Maybe I can finally clean the house!

Love, Sandy

Monday May 20, 2002

Dear Friends,

Grant has had a painful last couple of days. Yesterday (Sunday) he said he had pain of level 7 (out of max 10); they gave him Vicodin, and two hours later, he said he STILL had pain of level 7. So I got on the phone to Dr. Leung and insisted he do something. He said he would prescribe some kind of skin patch that delivers pain meds continuously; the nurses told me THEY had suggested the patch to Dr. Leung several days ago but he doesn't listen to them.

I think we finally have a reliable communications system in the works, thanks to Grant's friends at Adobe, especially Dick Sweet and Martin Newell. Grant has been very distracted by pain, though, and has not been able to take advantage of it. He also seems very depressed. I hope efficient pain relief will help. The nurses say pain is not unusual with the sort of spasticity Grant has: of the five patients at Care Meridian, two use a pain patch.

Grant was up in Floyd's wheelchair twice last week. He finally got to see the building and the grounds. It takes at least five people to do the transfer to the chair from the bed, because the bed is too high to do the transfer in a single step. They move him on to what we call “the scary lift” (the extremely narrow one they use for bathing him); THEN they move him to a Hoyer lift, which is like a motorized sling, and then to the chair. He has to be strapped in securely, including a wide strap across his forehead. We put his sunglasses on to go outside, and he looks very cool, sort of hippie-like.

Grant is now on the fourth Harry Potter book on tape. He is really enjoying those. I have also been listening to the tapes in the car. The books are a real surprise. They are very entertaining and very SERIOUS. They are about suffering, loss, courage, death, love, friendship, character, various forms of evil, etc. They remind me of the Narnia books, but without the specifically Christian elements.

Love, Sandy

Wednesday May 22, 2002

Dear Friends,

Have a look at Grant up in the wheelchair today!

(I haven't met some of you who get these notes, so FYI, I am the other person in the pictures.)

Grant got the pain patch Monday. With that, plus the new muscle relaxant, he was a real zombie. But he had less pain and felt a “3”. Tuesday and today he's been feeling worse; he rates himself overall at “2”, the lowest I've seen since we starting doing these ratings. His main problem is shortness of breath, so they've had him on oxygen. But he's much more alert. The pain started to come back today (at level “7/10” and he asked for Vicodin). So they may raise the dose on the patch tomorrow. The pain patch is Fentanyl, a highly-controlled opiate derivative that can generally dampen sensation and cause him to cough less, which would not necessarily be a good thing, given that he's got a chronic “colonization” of bacteria in his lungs. The sitting-up is helpful for that, though.

Leeza got a deal on a rental wheelchair so Grant'll have something to use until his is built. Aetna approved it finally.

He got a visit from the rep for the EZ-Keys system today. Martin worked with the guy, and they got an infrared motion-detection switch working pretty well.

Love, Sandy

[Contacting Joe and Diana – Aetna alarm]

Phone mail message

Hi Joe and Diana,

I left you a message yesterday or Friday re Aetna saying Grant wasn't progressing fast enough and they were thinking he should be moved to a “long-term acute” facility.

Well, it appears to have been another empty threat. The Care Meridian nurse told me they had worked something out with the Aetna case manager.

I figure you guys are probably gone for the long weekend, so I just wanted to make sure you didn't get too concerned.

It was great knowing I could ask you about this!

Cheers, Sandy

Grant used EZKeys

Hi Dick!

I just wanted to let you know Grant was more awake today and used EZKeys to write his name and my name with NO HELP AT ALL. He even figured out how to backspace and do a line feed. He made a capital “S” on my name — I don't even know how to do that with EZKeys!

He says he is excited about using it more.

Thank you so much!

Sandy

Tuesday May 28, 2002

Dear Friends,

Grant has been more “up” the last couple of days. He has been using the EZKeys software with a bit more enthusiasm. Sunday he spelled his name, and mine. Today he was exploring the other (non-alphabetic) keys, to see what they do. He gets tired quickly, but I could tell he was into it for a while.

He also watched some of the EZKeys video. He seemed especially interested in the part where they showed how to program X10 devices — something Grant has been doing for years. You could practically see the wheels turning in his head: “Now I can radio-control the world! Neat!”

The video has a totally practical focus — no big emotional drama about disability. It's nerd-to-nerd. I think it was really good for him to see the video, because it gave him a vision of a possible life. EZKeys is really versatile. One of the segments in the video even shows how to talk on the phone using the computer-generated voice.

Two people told me they couldn't access the pictures on punkalunka the other day. I don't know why. Both these people were using Apple computers and Netscape. Can anybody advise me how to change the file so it can be read by anyone?

Grant gave me a smile today also! A real one.

Love, Sandy

Tuesday June 4, 2002

Dear Friends,

Grant has had a pretty crummy week; he says he has not felt better than “2” out of 10 any day. He is getting meds for pain, but the meds make him dopey and spacey and sleepy (and, God knows, probably other dwarves as well), and he can't focus on anything — not even TV. Just when we're good to go with the computer! AARGH!

He has had swelling in his left leg for about a week, and the medical people were very concerned about that. They thought he might have “DVT” (deep vein thrombosis) — a blood clot that can cause a lot of pain, and could start moving around and kill him. So we went back to Saint Louise yesterday to have an ultrasound on the leg. It turns out he doesn't have DVT. So we're back to square one with the pain issue. Pain management requires active MD involvement, which Grant is not getting, IMHO.

The good news of the week is that Dr. Leung has resigned, and not a moment too soon. I had already told the Care Meridian people that I was not happy with the care Grant was getting from Leung. I think Leung wrote Grant off, decided Grant was a goner, six months ago, and then found himself without a backup plan when Grant didn't just cooperate and die.

Grant's birthday is Sunday June 16. They're going to have cake and a little party at Care Meridian. They hope to get Grant up in the wheelchair and have the party in the living room, in the afternoon. I can't give an exact time, but you're all welcome to come! On the day of the party, you can call Care Meridian (408/686-0758), and they may have a better idea about exactly when it will be. (It depends how busy things are in the facility; all hands are needed to put Grant into the chair.) Hope to see you!

Love, Sandy

-----Original Message-----

From: Kathy Dougherty

Sent: Friday, June 07, 2002 12:49 PM To

Subject: Hi!

Hi Sandy!

Hope everything is as good as it can be for you given the circumstances. I'm having no trouble adjusting to retirement life. Of course, at the moment it's just like any other summer when I didn't teach summer school. We'll see how I feel in the Fall.

We're busy planning our trip to New York the first week in July. Have you made all your plans?

Must get ready to leave for Sonoma again this weekend. Bill tries to get out of work somewhat early so we can avoid some of the traffic.

Love, Kathy

RE: Hi!

Hi Kathy!

It's good to hear from you. Grant enjoys your cards. I was in Aptos two nights this weekend — I haven't stayed there the whole weekend since February. I'm going to be going to Montreal (really upstate NY) July 3 - 10. One of my many nieces is getting married in Lake Placid. I sang at her mom's wedding about 30 years ago. They didn't intend to invite me to the wedding originally at all, because they figured I wouldn't be able to come, but now that they heard I was going to be around anyway, they asked me to SING! I'd better start practicing.

Let's get together for lunch — maybe this week?

Sandy

Monday June 10, 2002

Dear Friends,

Grant's going to go back to the hospital today for a GI evaluation. He's been throwing up some and feeling generally bad. They can't do anything for him at Care Meridian, and they are worried he will get dehydrated. They asked him if he wanted to go to the hospital to check things out, and apparently he indicated yes.

I don't know yet which hospital he's going to end up in. Dr. Leung wants him to go to Los Gatos, which seems like a good idea if only because Dr. Leung won't be in charge of him there.

Yes, Dr. Leung is still on the case, to my great annoyance. Because Dr. Leung has resigned as of June 30, Dr. Miner is reluctant to step in before Leung is officially out.

So if you're going to visit today or this week, be sure to check out where Grant is. I'll let you know when I know.

I gather this is not necessarily an immediate life-threatening emergency, but the Care Meridian folks are very concerned.

I hope Grant can get back to Care Meridian ASAP because his wounds always get worse when he is out of his Clinitron bed for any length of time — even a day or two in a regular bed can start breakdown.

I hope he is sleeping a lot and not uncomfortable.

Love, Sandy

-----Original Message-----

From: jimmull

Sent: Monday, June 10, 2002 2:04 PM

Re: Grant Monday June 10, 2002

Hi Sandy -

Just a thought. I know from my own experience last summer after surgery that being on pain medication can cause nausea (and vomiting). The pain medication slows down the peristaltic motion (which is also affected by being immobilized). It all sucks. Anything they do for you (like giving pain medication) has some other adverse affect. I don't mean to be presumptuous. I'm sure the MDs' etc. with Grant are well aware of all these things. I just have found in the recent past that any little bit of health information is helpful. I am lucky enough to have a good friend who is also a very good nurse (and, unfortunately, going through her own major health crisis) who, along with some other people, has given me a lot of insights.

Jim

RE: Grant Monday June 10, 2002

Thanks, Jim. I am putting this info into the general email because his current Los Gatos doc is on the list. So she'll read the email and the idea will be planted in her head, and later perhaps she'll think SHE thought of it. Thanks again.

Sandy

Monday June 10, 2002 (late)

Dear Friends,

Grant is going to be in Los Gatos Community Hospital for (I hope) just a few days. They did many tests today, including X-rays of his stomach and chest, and apparently didn't find any obstruction that could be causing the vomiting. His preliminary blood work came back fine, too. So they're going to reintroduce food and fluids gradually, and see what happens.

A friend of mine suggested that Grant's pain meds alone could be making him sick to his stomach, and as a side effect, pain meds can slow peristaltic movement as well. I thought that was an interesting suggestion.

The plan is to keep him in Los Gatos until Friday. So if all goes according to plan, the birthday bash (Sunday June 16 at Care Meridian) is still on.

Love, Sandy

Wednesday June 12

Dear Friends,

Grant's been having a couple of fun-filled days at Los Gatos. He's in Room 205, in the Med-Surg wing (not the ICU), so there are no unusual limitations on visiting. He has a nice private room. We are like movie stars here — people recognize and greet me when I walk around. Jeri and Faina have both been around to visit our guy.

Grant's tests so far have been mixed. He has a complex urinary tract infection with two kinds of bugs. One bug can be zapped only with Vancomycin. The hope is that Grant won't have to be on the Vancomycin long enough for toxic levels to build up and wreck his kidneys again. The good news is that his lungs are fine and he doesn't have aspiration pneumonia. He has been running a low-grade fever (100-101) since Sunday, and the docs still aren't sure what that's about. He had a central line put in today because they are doing big-time tummy tests tomorrow. The tests require the G-tube to be completely empty (not even water), so they needed a way to give him IV fluids and since nobody can start a regular IV on him (not even the anesthesiologist), the only hydration alternative was the central line. They're going to have a close look at his G-tube and colostomy tomorrow. The docs are beginning to suspect his digestion problems may be due to a GI fistula, or possibly a hardware problem either with his G-tube or colostomy apparatus.

I'm not having such a good time myself. I feel bad that I can't be there around the clock, because the nursing care is so different from the ICU and Care Meridian. The med/surg nurses seem competent enough and are very nice, but they have many more patients. The hospital currently appears full to bursting, and everyone seems frantically busy. Monday we arrived by ambulance in the ER around 11:30 AM, and it was after 8:00 PM before Grant got moved to a room. Because he was vomiting, the Care Meridian people had stopped his feeding at 2:00 AM Sunday night, so by Monday evening he hadn't had anything to eat for quite a while. The plan was to start his feeding slowly. It had been ordered for Tuesday AM so I expected it would be well underway when I got there around 10:00 AM — but it still wasn't happening by change of shift at 3:00 PM. Then the poor nurse, who was now working overtime, brought in the food bag and hung it — and then we had to wait another hour because there was no pump! Dr. Armstrong himself changed Grant's wound dressings Monday evening — they're changed every 12 hours — but no dressing change had been done by change of shift Tuesday afternoon either; and that had been ordered too. (You may remember he GOT the wounds there originally — I would think they'd be especially careful about his wound care.) A bag of medication had been hung, though not connected, and it had the wrong patient name and the wrong doctor name; they said the medication itself was correct but I noticed they threw it directly into the trash. Anyway, by change of shift Tuesday at 3:00 PM, I was starting to get a little bit, shall we say, assertive. Today (Wednesday) was better, thank goodness. Things seemed somewhat less out of control.

Grant was surprisingly awake and alert Tuesday — he was even reading. Maybe starvation IS good for the mind. Today he seemed to be feeling the effects of the food and the antibiotics and was on the sleepy side. The central-line insertion procedure did not go smoothly either (the guy had to do it twice).

I'm not getting any sense of worry or alarm from the medical folks, though — nothing like last year or even six months ago. So I guess that's good!

Love, Sandy

Saturday June 15, 2002

Dear Friends,

Grant is still in Los Gatos Community Hospital, and will be here at least until Monday June 17. So his birthday party will be postponed, probably until next weekend. His wheelchair was finally delivered, but it is at Care Meridian.

The only reason he's still at Los Gatos is that he has had a slight temp, and they want him to be without fever for a continuous 24 hours before moving him. He has a big rash from a drug reaction — nothing serious but scary-looking — and the rash might be causing the fever.

The tests all came back normal, so I'm not sure we've gotten to the bottom of his vomiting problem. They're going to change his feeding formula, and see how things go.

Love, Sandy

Monday June 17, 2002

Dear Friends,

WOW! You should have seen Grant today. His head was swollen to the size of a pumpkin and his face was beet red! His eyes were little slits. It's still the drug reaction — nothing to worry about, but it sure looks bad. Just in terms of appearance, this is definitely the WORST Grant has looked since he's been sick. I asked Grant if he wanted to see himself (everyone was commenting about how he looked); he indicated yes, so I held a mirror up to his face and he did “the surprise look” and a very eloquent eye-roll.

He is still in Los Gatos, and will be here a couple more days because the docs are afraid that if they send him back to Care Meridian looking like this, Dr. God-loves-you will send him right back here.

Otherwise, he's okay — all tests were fine. He's very sleepy because he's on Benadryl and Prednisone to keep the swelling down.

Love, Sandy

Thursday June 20, 2002

Dear Friends,

Grant is scheduled to go back to Care Meridian tomorrow (Friday), so the birthday event will most likely be this Sunday June 23. He was better today; he actually said he was a “3” for the first time in a couple of weeks. His skin, which was blistered and swollen from the penicillin reaction, is starting to flake and peel — something I actually don't mind at all.

Today he got his trach tube changed (a normal procedure for him). But he started to cough and I noticed the tube was hanging out of his neck about an inch and a half — usually it's not visible. He was coughing hard and obviously wasn't going to stop until the tube was repositioned. So I went to get the nurse, and before I knew it, Room 205 was full of busy people — respiratory therapists, nurses, and two people with the crash cart, ready with the paddles! I was more surprised than scared, though. I've seen the tube sticking out a bit before, though never quite that far. Anyway, I'm glad their response was so prompt and thorough, and I'm glad it was unnecessary.

Love, Sandy

Tuesday June 25, 2002

Dear Friends,

Grant finally got back to Care Meridian on Saturday (not Friday as expected). The ambulance people were supposed to arrive at CHLG at 2:30 but they were very late. How late were they? I don't know exactly. I was already at Care Meridian waiting for Grant to arrive. I heard conflicting reports; one nurse said they arrived at CHLG at 4:00, another said 5:00. In any case, by the time they were ready to leave Los Gatos, it was too late to get to Care Meridian before the 7:00 PM shift change — there are not enough people at Care Meridian during the 7:00 PM - 7:00 AM shift to safely handle an admission. So he went Saturday around 11:30 AM.

Grant has been coughing a lot of looks like some kind of infection, so he is on antibiotics again. He coughed up some feeding once yesterday, and we are hoping that was an isolated incident and not a sign of the vomiting recurring. He feels “3” every day; he is still not feeling well. He is not very awake, either. I set up the computer for him every day since Saturday, but so far he hasn't been awake enough to do anything with it. I finally set up the motion detector switch yesterday but he wasn't moving well enough to do any kind of proper test.

He can't get into his wheelchair until late next week at the earliest, because he's been lying down for 2 1/2 weeks now, and they have to re-accustom him to sitting up again. They'll sit him on the bed a few times and monitor his blood pressure to make sure he can sit up more than half an hour, before they try the chair.

I have been low the last few days also. I didn't sleep well Saturday night in Aptos, had a bad headache all night, and then got up Sunday and threw up my dinner. I'd say I felt like a “2”. If this is how Grant feels all the time, I can't imagine how he endures it. I was ready for someone to shoot me and take me out of my misery after only a few hours.

Love,Sandy

Tuesday July 2, 2002

Dear Friends,

Grant's been pretty much the same — still a “3” most days, feeling “yucky”. He is still coughing up his feedings a little, and says it's hard to breathe.

Grant's parents came up yesterday, and they'll be here for 10 days or so. I am going to upstate NY to see my Mom and attend a family wedding. I'll be gone July 3 - 10, so there probably won't be any updates during that period.

Grant finally got to test out his new wheelchair. He's been up in it a couple of times for an hour each time. He seems fine with it. We went outside and he saw a group of turkey vultures, which he enjoyed.

Care Meridian is having a barbeque on 4th of July, and all residents' friends/families are invited. Stop by for a burger if you like! Grant's Mom and Dad will be there. I think lunch will be from 12:00 to 2:00, but probably there will be food all afternoon. I think the plan is to get all the residents up and outside.

Dr. Leung and one of the nurses had a major fight last week; the nurse threatened to quit if Dr. Leung didn't. And on Friday Shelley, the Director of Nursing, told me Friday that Dr. Leung was NOT leaving after all. Then Saturday Dr. Leung came in and sat down with me for an extended chat, in which he mentioned God only twice. It was so transparent; he obviously wants to “make nice” and mend fences. He actually talked about how happy he was that we were establishing a “relationship” — while he was not listening to anything I was saying. I think it's too little too late. Yesterday Shelley said Dr. Leung really IS on the way out. It's “Days of Our Lives” at Care Meridian! I think things will settle down this week when Dr. Miner returns. The nurses and therapists really do know more than the doctors about patients like Grant. The bottom line is Dr. Miner listens to the nurses; Dr. Leung doesn't.

I wish Grant were feeling better!

Love, Sandy

Tuesday July 16, 2002

Dear Friends,

Grant is not changed much. His trochanter wound is worse, and he still feels “yucky”. Because of the wound, he won't be able to sit in his wheelchair for at least another two weeks. I expect an attempt will be made to close the wound surgically before too long.

Dr. Leung is still not gone, but almost. He's gone temporarily right now and Dr. Miner has been starting to take over.

I set up the computer for Grant every day, but not much happens. Thanks to Grant's Dad, the EZKeys system is working on the portable now, so things are much easier to set up. I was cleaning off my desk and reading some notes I made last year talking to some doctor: the phrase “significant cognitive deficit” really stood out. I didn't believe it then, but I'm starting to wonder now. I was hoping that things would change dramatically when Grant could communicate more easily, but so far that hasn't happened. Occasionally (like about once every two or three weeks) he writes something intelligible — two or three words at most and only if I constantly keep him focussed and encourage him. But he hasn't initiated any messages, except “I love you” (several times) and “Hope you still ...” [it ended there]. I'm sure he is very depressed besides feeling yucky, and I'm sure the depression would make him appear to have severe cognitive deficit. But I don't see a lot of practical difference between “has severe cognitive deficit” and “appears to have severe cognitive deficit”. And Grant is a stubborn guy; if he's decided to be uncooperative, there's no way we're going to find out.

Here's an insurance question. Has anyone had this happen? Grant had a surgery last fall, with Dr X. Dr. X's name was on the consent form I signed. OK, I expect there are going to be other docs in the OR, like the anesthesiologist. But for this surgery, I started getting a bill from a Dr. Y, who was the “assistant surgeon”. At first I thought the bill was just a mistake, because that was the first I'd ever heard of Dr. Y. Aetna also asked for an explanation — the bill was rather large ($2500 — to get you calibrated, the surgeon got $4K, the highest figure by far for any surgery on Grant). I had to write Dr. X and have her explain to Aetna what Dr. Y was doing there. Dr. Y happens to be in the same office as Dr. X, I might add. Aetna, after about six months, ruled that Dr. Y's presence was medically unnecessary, and so Dr. Y is now billing ME again. I have still never met Dr. Y; for all I know, he may not even exist. Does anyone know what my legal obligations are here? I mean, I didn't consent to having Dr. Y there specifically, and nobody told me in advance that this surgery would require two surgeons, either. In fact, this surgery was portrayed to me as relatively trivial. So if Aetna says the assistant surgeon wasn't medically necessary, maybe they're right, for all I know, and I'm being extorted. Or maybe Dr. X made the right medical decision. Something doesn't seem right here, though. Or am I just being cheap and paranoid? Thanks in advance for any words of wisdom!

Love, Sandy

-----Original Message-----

From: Sherry Schaefer

Sent: Thursday, July 18, 2002 4:30 PM

RE: Grant Tuesday July 16, 2002

I was hoping against hope that I'd get a message saying Grant was feeling and doing much better on your return. I'm so sorry and sad to get this news. ARrghghghhg.

Should I still plan to visit on 7/28? I always enjoy seeing you, Sandy, so I'm inclined to come even if Grant is sleeping. But if having visitors only irritates him, I won't come.

What a crappy situation re that surgeon. Let's kill him. Or yeah, that's wrong. I passed your message onto Eric Norris (who’s an attorney too), but never heard from him. I hope he's still on your mailing list and so now has two copies.

I think there's more going on in there than it looks like.

How was your trip?

xoxo, ss

TO: Sherry

RE: Grant Tuesday July 16, 2002

Yesterday as I was about to leave, I asked Grant to use the mouthstick to indicate if I could do anything for him before I left. He pointed to “Free Write”, which means he wants to spell out something. He spelled “S-T-A-Y”! I was amazed; I have never seen him use “Free Write” and I was wondering if he even knew what it was. I stayed a while longer, needless to say.

He feels “3” but doesn't act all that different from when he was “5”, so I'd say sure, come see him. He's not getting nearly as many visitors, and I know he enjoys seeing you.

Sandy

RE: Hello "Hi Eric,

How wonderful to hear from you! I am well, but the last 15 months have definitely been the worst of my life. My husband Grant developed brain stem encephalitis. He was hospitalized on March 31, 2001, and has never come home. He is quadriplegic, tube-fed, incontinent, and unable to speak — yet he can signal yes/no, and seems to be fairly intact mentally when he is awake (seldom). The disease did not affect the part of the brain controlling memory, intelligence, etc. — he can still read, for example, but it's hard for him to stay fully awake for more than a few minutes at a time. His medical bills are rapidly approaching $4 million. Many interesting philosophical questions about personal identity (is he the same person?), and personhood (is he a person at all?) here. The doctors are useless at this point. In the medical literature only 30 people have had what he has, and they all died long before 15 months. The prognosis is very poor. He is “living” in a care facility in Gilroy, and I visit him every day — I am teaching the majority of my classes online now, so I can work more flexible hours. It is a real nightmare.

What's up with you? I'm curious to know.

Sandy

[Dr. Cathy Grellet, who was Grant’s original MD at LGCH, responded to my query of regarding the double billing for the surgery. She asked who was involved and what happened exactly.]

RE: Grant Tuesday July 16, 2002

Hi Cathy,

Dr. X is Jeyapalan; Dr. Y is Dr. Peter Youn. Both are in Gutman's office. I was wrong about the amount billed; it was only $1050, but that's still more than 20% of what Jeyapalan got.

I sent them the letter below, and their office person left me a message today. Their prompt response makes me hope they are willing to settle something.

I've been well myself — I haven't been sick a day since Grant's illness began. He is, to my eyes, not much changed since his discharge from LGCH. I have been disappointed that the computer access has not made much difference in his communication.

The other day, one of the Care Meridian nurses asked him if he was glad to be back in Care Meridian (he was in the hospital for 12 days in June). Grant nodded. Then she asked him if he felt that coming back to Care Meridian was coming home. He shook his head — a very definite “NO”. I spoke with him about that later; I said “You want to go home, don't you?” and he nodded and started to cry. (Of course he can't cry tears because his tear ducts don't work right.) He is often depressed. He is pretty out of it most days, but when he's aware, he's often miserable. I don't know what to say to him, either. If I knew I would never walk or talk or eat or work, etc., I think I might want to die. I don't think anyone is necessarily doing him any favors by keeping him alive — but I am concerned that I may simply be suffering from a failure of imagination. Meanwhile, he keeps getting UTIs and he still has the pseudomonas in his trach. He feels “yucky” pretty much every day.

I would like to have a hopeful vision of a future for him, but everyone says it's not “realistic.” And if it's not, then I guess I don't understand why we are putting him through this. He just can't sustain attention. In philosophy, there are a few well-accepted characteristics of personhood, and he falls short on several counts. He is more like a very beloved pet than anything else now, most days.

The other day Dr. Miner (the one I like) said he'd “beaten the odds” — what odds has he beaten exactly, though? There is no “him” — no continuous person, as far as I can tell. I am sure if the well Grant had been presented with this scenario as a “what if”, he'd opt for the solution with the least suffering.

You always had a really positive outlook. Maybe I just don't understand what a possible future for him might be. As far as I can tell, he's never going to eat or talk, so he's going to need a lot of equipment and help, just to prevent dehydration and starvation and bedsores — and that's when things are going well (no infections)! I think the best-case scenario would be him using the computer to control his environment, write programs, communicate with people via email, surf the net, write programs, etc. But he has to be awake to do any of that, and I don't see that he's getting much better that way. (And when he seems to be better, he's more aware and often more sad.) I wish I had some optimistic vision of a future for him; he'd listen to me. But I don't know what to say. It seems unfair to tell him he can expect to get well, or even get better than he is now. I tell him things will have to get better, simply because they can't get worse. But that's cold comfort. I wish I could hold out some hope to him that he might come home someday, but if he stays like this, he probably won't, right? Or if he does come home, his care will be very compromised. Sometimes I think I should just rent a van and put him in his wheelchair and drive him to our house in Aptos and set him up in the bedroom there with me, with the beautiful view of the bay, and let things take their course. But I am terrified to propose that to him, because I think he'd probably agree. He's already indicated he doesn't want to go back to the hospital for another surgery on his trochanter wound.

I ask him a lot how HE feels; I tell him if he feels he's getting better, he shouldn't give up. For a long time he indicated he felt that he was getting better; now he doesn't answer.

I'm making it sound like he says stuff and makes his wishes known clearly, but most of the time, it's pretty much like talking to the cat. It is not like talking to Grant.

The thing is, he looks fantastic. It's like he's getting more and more beautiful. He smells great. He is so cuddly. He makes kissy faces. He often points the mouthstick to “I love you” on his phrase list. I still adore him. I'm sorry to go on like this. I just don't know what to say to him on those rare days when he can communicate fairly well. I suppose there's the answer, though — I should be with him when he's there, and not think we have to have meaningful communication about the future. I want him to be as involved as he can be with his medical decisions, but maybe he doesn't have to be. Things will get resolved soon enough, I suppose.

Thanks for reading this. The letter to Jeyapalan and Youn is below.

Love, Sandy

____________________________________________________________________________

June 20, 2002

Dr. Manjula Jeyapalan Dr. Peter Youn 14850 Los Gatos Blvd. Los Gatos, CA 95032

Dear Doctors,

Dr. Jeyapalan was the supervising surgeon for a laparoscopic colostomy performed on my husband Grant Munsey on August 8, 2001. Dr. Jeyapalan is the only surgeon mentioned on the consent form (attached).

Doctors from your office (especially Dr. Gutman) performed several procedures on my husband in 2001, so I have had some experience with your bills and fees.

In every case, Grant’s insurance company (Aetna) made some payment to the supervising surgeon without any problem. For example, here is a list of some of the procedures and fees:

Doctor Date Fee Charged Negotiated Fee Paid by Aetna Gutman 7/27/01 $1900 $584.50 $584.50 Jeyapalan 8/3/01 $835 none listed $835 Jeyapalan 8/8/01 $4200 none listed $4200 Gutman 8/16/01 $3500 $1523.24 $1523.24 Gutman 9/11/01 $500 $183.54 $183.54 Gutman 9/16/01 $500 $182.32 $182.32 Gutman 9/16/01 $300 $128.41 $128.41 Gutman 9/20/01 $2500 $962.91 $962.91

Grant has secondary coverage through me, with Blue Shield. Your office has also billed Blue Shield and collected as follows:

Doctor Date Fee Charged Negotiated Fee Paid by BlSh Gutman 8/16/01 $3500 $1465.44 $1465.44 Gutman 9/16/01 $500 $197.54 $69.13 Gutman 9/20/01 $2500 $1018.62 $55.71

Note that Aetna pays Dr. Jeyapalan the full amount billed. Aetna pays her far more than it pays Dr. Gutman. I do not understand why this is so. Dr. Gutman collects from both insurance companies, but still does not get nearly as much as Dr. Jeyapalan.

I have no particular problems with any of these charges. I do not understand why Dr. Jeyapalan gets paid so much more, but as long as insurance pays, I suppose I don’t really care. Note that her fee for the laparoscopic colostomy of August 8, 2001 was by far the largest single payment received by any of your surgeons for any procedure on my husband last year.

Aetna has paid for assistant surgeon services also. Aetna paid in full ($475) for an “assistant surgeon” (Jeyapalan) for Gutman’s procedure of 7/27/01.

I am writing to you today about Dr. Youn’s bill for assistant surgeon services on August 8, 2001 – the laparoscopic colostomy mentioned above, for which Dr. Jeyapalan received $4200. Dr. Youn has sent me several bills for $1050 for his role in that surgery.

When I first got an EOB from Aetna for Dr. Youn, I thought it must be an error, since I had never heard of him and could not find his name in the list of doctors on the Web site for Los Gatos Community Hospital. Aetna’s remark on the first EOB was “Please have your physician send us a completed attending physician’s statement. When we receive this information, we will consider this charge.” So on September 24, 2001, I wrote the attached letter to Dr. Jeyapalan. Aetna determined that an assistant surgeon was not medically necessary. Two levels of appeal followed. Aetna still refuses to pay (correspondence attached), and Dr. Youn is now billing me directly for the full fee.

I am at a loss about what to do about Dr. Youn’s bill. Dr. Youn’s fee is almost twice what Dr. Jeyapalan charged for assistant surgeon services on 7/27/01. Dr. Youn’s fee seems quite high.

Furthermore, the consent form says the supervising physician may choose “associates and assistants” at his/her discretion from the medical staff of Los Gatos Community Hospital. Was Dr. Youn on the staff of Los Gatos Community Hospital on 8/8/01? In fact, as of this writing, almost a year later, his name is still not listed in the physician’s directory on the hospital web site.

Furthermore, a Blue Shield case manager has told me this situation smacks of “double-dipping,” since Dr. Youn and Dr. Jeyapalan are from the same medical office, and thus Dr. Jeyapalan is presumed to have a financial interest in getting fees for Dr. Youn. I am not accusing Dr. Jeyapalan of anything like this; of all the surgeons in your office, she seems to be the best paid! But on the whole, I find the whole situation rather irregular, especially given our insurance’s payment record.

I’m willing to assume for the sake of argument that Dr. Youn exists and is on staff at LGCH and the fee is reasonable and customary and everyone has the best intentions. But then there is the fact that Aetna ruled that Dr. Youn’s presence medically unnecessary. I am, of course, no judge of that, but I cannot help note that Aetna DID pay for an assistant surgeon for Grant on one occasion, so clearly Aetna does not routinely refuse to pay such charges, and Aetna’s refusal to pay Dr. Youn is not a merely arbitrary decision on their part.

Therefore, I am requesting that you consider some alternatives:

1. Since Aetna paid Dr. Jeyapalan very handsomely for this procedure, she could reimburse Dr. Youn.

2. Dr. Youn could pursue the next level of appeal with Aetna.

3. Dr. Youn could attempt to bill Blue Shield, the secondary insurance. That has worked for Dr. Gutman. I am enclosing the secondary insurance information. Given the amount of money involved, surely you should have no hesitation about billing Blue Shield if the fee is justified and appropriate.

4. You could write off this charge by Dr. Youn.

My husband is catastrophically ill. Aetna has paid over $3,500,000 since his illness began. He is quadriplegic and cannot speak or write or eat or stay awake longer than a few minutes at a time. We have had considerable out-of-pocket expense, of course, since Aetna and Blue Shield combined still do not pay for everything. Your physicians have already received thousands of dollars from our insurance already — the largest payment by far being Dr. Jeyapalan’s for this laparoscopic colostomy.

Susan Sordello, North American benefits manager at Adobe Systems (Grant’s former employer), is following this case with interest, as is my attorney.

I hope we can resolve this matter to everyone’s satisfaction. Thank you for reading this letter and thanks for any assistance or clarification you can provide.

Sincerely,

Sandra LaFave (wife of Grant Munsey) 5073 Shady Avenue San Jose, CA 95129

CC: Susan Sordello, Adobe Systems Aetna U.S. HealthCare Blue Shield of California " Sandy LaFave grellet@earthlink.net

Thursday July 25, 2002

Dear Friends,

Grant's been getting some new medicine this week for his breathing, and although he says he doesn't notice that it's doing anything, he still has been a “4” the last few days — up from “2” and “3” last week.

He had a very good day today — the kind of day that really destroys me and makes me feel he's really “there”. First he was up in his chair outside for close to two hours. Being up seems to give his brain a little extra juice. Grant's Dad got him an e-book about this new programming language C# (C-sharp), and I loaded it up on the computer when I arrived. Grant was really interested in it. C# may be the hottest thing in Grant's life since the Harry Potter books. Today he was so interested that he read it BY HIMSELF for about 45 minutes, using the page-down function in EZKeys (which requires 3-4 head turns) to advance the e-pages.

I was able to just let him go at his own pace. He never was a fast reader, and his reading is now much slower, but he was definitely doing it. Think how complex the cognitive task is for him — he has to read the text, and then do the complex EZKeys operation to move the text down, and then remember what he was reading and pick it up the train again, and then interrupt for another complicated page-turn ... And I know he's doing it in a nice rhythm even though I'm not watching him, because Dick Sweet got the EZKeys voice working, and it pronounces “PAGE DOWN” whenever he succeeds. I heard about 10 “page down”'s! Grant also makes mistakes; he gets the page down wrong about 25% of the time — he anticipates and does a page-up, or gets into another whole menu in EZKeys — but he recovers! I.e., he remembers how to get back to the EZKEys cursor control screen (a sub-task within a sub-task). I told him I was SO proud of him, and he smiled.

This was a rare day indeed.

Love, Sandy

RE: Grant Tuesday July 16, 2002" "Dear Cathy,

I would love to talk to you, and it doesn't have to be all about ME. Weekdays I go to Gilroy every day around 2:00 PM and I get back around 7:00, and I'm off for the summer, so most weekdays I'm pretty open. The next few days are looking busy, though — going to Aptos Friday and/or Saturday, taking a couple of my girlfriends (age 5 and 7) out to lunch, and singing Mozart Monday night. How about next week, Tuesday or Wednesday lunch or dinner?

Sandy

-----Original Message----- From: Catherine Grellet [mailto:grellet@earthlink.net] Sent: Thursday, July 25, 2002 9:27 AM To: Sandy LaFave Subject: RE: Grant Tuesday July 16, 2002

Dear Sandy, It was a good letter and you have EVERY right to pursue this. When do you have time for dinner one evening or lunch over the weekend? I'd think it would be good to sit and talk. Until the motor neurons went, we all thought Grant would recover. After the neurons went, we thought he would maintain significant brain function (like someone with ALS - Lou Gehrig's Disease or MS or a Christopher Reeve situation.) Certainly, if he were like Christopher Reeve he could have been very happy with computers and solving this problem. So maybe it is time to rethink treatment (or lack of treatment) options. 408 370-9009 HOme # Cathy

-----Original Message-----

From: bob johnson

Sent: Friday, July 26, 2002 12:42 AM

Re: Grant Thursday July 25, 2002

Hi Sandy, Sounds like it was a very good day for Grant. I remember that my own feelings of “being destroyed” (as you said in your email) gradually shifted to the back burner, and were replaced by real happiness on the days when my sister was actively involved in her own limited life. She got to the point where she could eat, smoke, and look after the little old lady in the bed next to her. It wasn't much, but it was a full life for her, relative to her abilities. And it really did satisfy her. When I realized that, I was greatly unburdened. I could forget how seemingly awful her situation was (by my “normal” standards). I was actually happy ... I knew then she had a life of her own. her own world, and that it was important to her, and full and meaningful to her. So maybe your feeling bad is partly caused by seeing how limited Grant is now compared to the “normal” life ... but that comparison has to be gradually shifted away ... probably you already do this. It just brought up those memories for me... and I remember how greatly relieved I was when I could just forget about how much she had lost. Of course you never completely forget. Even now I get very choked up recalling what she went through. But still, I know she was content for a long time. Anyway, I hope you are able to relax and do some things for yourself. You really need to, just to keep your own health and vitality.

Your friend, Bob

Thanks for your note

Hi Bob,

Thanks so much for your note. I think you are right about having to let go of the burden of wanting Grant to be like he was. If he is happy and fulfilled doing the little he can do, for the little time he's awake enough, I guess that will have to be enough. I have been disappointed that the computer access has not made much difference in his communication; but being disappointed that way isn't helping him or me.

...I'm sorry to go on like this. I've been trying to talk seriously to him about his future on those rare days when he can communicate fairly well. You've got me thinking maybe I shouldn't, though: maybe I should just be with him when he's “there”, and not take advantage of his relative alertness to insist that he tell me what he wants for his future. I don't want to make the hard decisions by myself — but those big meaningful conversations just make him sad and frustrated. I want him to be as involved as he can be with his medical decisions, but maybe he just isn't going to be there enough — ever — to tell me clearly what I should do.

I suppose things will get resolved soon enough.

Anyway, your note helped! How are you doing, BTW?

Love, Sandy

Tuesday July 30, 2002

Dear Friends,

Grant's alertness of last Thursday was temporary. He has been fairly out of it since then. He has not felt up to using the computer at all. He has a raging urinary tract infection (UTI) and it's an antibiotic-resistant bug. To treat it full-on would require hospitalization, since he needs IV antibiotics, and that means he needs a central line and ICU monitoring. The doctor situation at Care Meridian is in flux at the moment: Dr. Leung does not want to treat this UTI at all, since the type and amount of antibiotics Grant requires would likely trigger another kidney failure — i.e., if you fix this one thing (which is currently not killing him), you're likely to totally break something else, which COULD more easily kill him. Dr. Miner is not an internist and will likely defer to Leung on this call.

Of course, it's possible that the UTI will just go away with a lot of hydration. That's the current treatment. But the acting Director of Mursing (the DON) at Care Meridian felt we had to sit down together today and have a serious discussion anyway. The DON (a guy) says it's now just a matter of which system failure will deal the fatal blow. Grant has a chronic trach infection, which can bloom out of control at any time; there's ALWAYS a risk of pneumonia with the pseudomonas he's got growing there. The docs don't want to treat the pseudomonas, since it's not killing him, whereas an antibiotic reaction could. And then there's the Foley, combined with a bit of (normal) prostate swelling. Because of the swelling, they have to use a smaller catheter than would be optimal for drainage purposes, so his bladder never really drains completely and bacteria are always going to be growing in it. Grant's also got the nasty tunneling trochanter wound. That wound is not going to heal without surgery, according to the DON, but the surgeon doesn't want to risk it, since Grant has so many potential sources of infection: if the pseudomonas or the enterococcus got to the surgery site, it would probably be all over Grant's immune system is kind of hyperactive, though — it's what got him into this in the first place — and according to the DON, people in his perilous condition sometimes hang on for years. He has always beaten UTIs before. So I don't know how seriously to take these sorts of conversations. But the DON wanted all the Care Meridian nurses to be aware of my wishes re end-of-life care: how much pain medication I want to be administered (it's a tradeoff: the more medication, the less alertness), whether I want him to go back to the hospital if this UTI goes septic (and risk kidney failure), whether I want him moved to the hospital if he starts having trouble breathing (pneuomonia is supposed to be a relatively painless way to go, said the DON with some enthusiasm). To me this sounds ominous, but I have heard this sort of talk so often that I am less afraid than perhaps I should be.

Today Grant's bed seemed not to be working right; it was extremely warm, which he hates. He was sweating a lot (medical people use the term “diaphoretic”) and uncomfortable and seemed sad.

Grant is still adorable, looks FINE, gives me a kiss pretty much whenever I ask him to. But he doesn't answer the majority of questions I ask him, and doesn't seem able to use the computer to do anything much. The dressing changes are painful for him also; he has a Fentanyl patch and gets Vicodin, but still twitches and grimaces. I think that's the only physical pain he has now, though. I suppose we have to just take things one day at a time.

This must be what the experience of war is like for soldiers.

Love, Sandy

Epistemology and latest Grant messages

Hi Erik,

Here are the last couple of messages about Grant. I write only about once a week now.

Your question about whether Grant's illness has changed my attitudes about life, philosophy, religion, etc. ... the answer is definitely yes and no. It's kind of like when you ask kids “Was Hitler bad?” They all say “yes”; they say the right answer. But then you make them watch “Schindler's List” or some equivalent “experience” or virtual experience. Then you ask “Was Hitler bad?”. They give the SAME answer (“yes”), but it's NOT the same answer. They know now in a way they didn't before. The same thing has happened to me with respect to claims like “Health is good”, “Bad things happen”, or “I am not in charge of the universe”. Of course I would have agreed with all these claims before; but now I !AGREE!, if you know what I mean.

I have had a few interesting philosophical reflections. For one thing, I realize I don't understand what hope is. I used to think it was a propositional attitude (a disposition one has with respect to a proposition) — like belief or agreement or amusement. But I think there's something intrinsically irrational about hope that makes it different from belief, etc. How CAN you hope when by definition what you hope for is NOT the case and isn't necessarily likely to be the case (if it were likely, you'd “expect” — you wouldn't need to “hope”). For example, I often said at first that I hoped for Grant's recovery, KNOWING his recovery was objectively unlikely. Isn't that contradictory, though? How can I KNOW “it's likely that not-P” AND at the same time reasonably hope for P, when hoping for P requires some objective UNcertainty about not-P? (If you KNEW not-P, you couldn't rationally hope that P. You could still hope, of course — and I did — I'm just saying hope is by definition not a REASONABLE propositional attitude.) I've provisionally concluded that the virtue of hope is the same virtue as faith (it's not a different virtue, as people usually think) — it's the same fundamental irrationality (you don't need to have faith that P if you know P, either; you only need faith in P when you know that not-P is just as reasonable or more reasonable to believe than P). Do you see what I mean? When I talk to non-philosophically trained people about this, they get all glassy-eyed.

This question goes straight to the heart of epistemology, I think. Someone who wanted to establish a sui generis notion of hope, distinct from faith, could answer that I can hope — hope is not irrational because when I hope, I DON'T really know. But that reply takes for granted that knowledge requires absolute certainty, which I reject, because that's an impossibly high standard — I have no problem with saying I “know” the sun will rise tomorrow. That's as good as it gets, epistemologically: it's justified and I believe it. If knowledge has to be absolutely certain, then I can't say I know I have a body or I know I'm not in the Matrix. But I DO know I have a body, as much as I know anything. But then — to get back to the paragraph that preceded this discussion of hope — there do seem to be DEGREES of knowing, and knowing isn't necessarily propositional, either. I.e., I can give the correct answer for truth value (“Hitler was bad” is TRUE), but the subjective place that's coming from (the belief place? the “!AGREE!” place?) can vary hugely.

I think the pragmatists have valuable input here — maybe you have to CARE about P, it has to matter, to say you “know” it. It has to make a difference. After the kid sees “Schindler's List” he CARES, the Holocaust matters to him in a way it didn't before. So because it mattered so much to me whether Grant got better, I couldn't really “know” he wouldn't, so I COULD “hope”??? We are very far from Plato now.

Do you see what I mean? Am I missing something obvious?

Sorry to get carried away about this — but you know how we philosophers get. Like you, I have sometimes introduced uncomfortable silences in social situations, by bringing up this sort of thing. :-)

Anyway, here are the last couple of updates.

Sandy

Okay, I think we've got this hope thing figured out

Hi Erik,

I really like your analysis. It's important to include warrant or justifiability.

Maybe I should back up and say how the issue came up for me. Some people in the last sixteen months have consistently said things like “Never give up hope!”. I found this very confusing, since it seemed more rational NOT to hope, and I did not understand why I SHOULD strive to hope. They meant “Never give up hope” normatively, see. Hope is one of the classic “virtues” after all. But what's so good about it? I think one SHOULD also be rational, and as much as possible conform one's attitudes to what is true/known (i.e., to what one can reasonably expect). So there seem to be two conflicting moral obligations in cases like mine, where the prognosis is bad and hope is unreasonable (so don't hope); but — at the same time — never give up hope! HUH?

So what do you think of the following analysis?

Arg 1: “Hope” (if it exists) is a virtue comprising attitude, possibility, and warrant, as you say. “I hope P” means “I want P, P is reasonably likely, and P would be good.”

If P is certain or virtually certain to happen, saying “I hope that P” would be odd. (Other things being equal, it would be odd to say “Gee, I sure hope the sun rises tomorrow.”)

If P would be bad, it doesn't make sense to hope for it.

The hoper must therefore be able to justify both “P is reasonably likely” and “P would be good”.

Arg2: If there is minimal/no warrant for belief that P, then the hoper cannot justify “P is reasonably likely” so one necessary condition for hope is absent. If “P is reasonably likely” is false, then hope collapses into magical thinking. Magical thinking can be useful, though, if it prevents insanity, despair, etc.

Arg3: If “P is reasonably likely” is true, then ONE of the necessary conditions for hope is satisfied. In this case hope is not magical thinking . But neither is it a virtue unless the hoper can also give an argument that P is good. Absent such an argument, hope reduces to an expression of plain old desire — “Of all the outcomes I can reasonably expect, I prefer P.” As an expression of desire, it is morally neutral. Moral judgments come in only when we consider the object of desire. In other words, reasonable hope (as a kind of desire) is not in itself any kind of virtue, since morally bad things are often likely, and people often desire bad things. A Democrat might want Al Gore to run for President again, and it's reasonably likely Al Gore will run again, but whether the Democrat's desire should count as an instance of the virtue of hope depends on facts about Gore. The Democrat's preference/hope that Gore will run is the virtue of hope defined above only if Gore would in fact make a good President. I.e., hope is justified if the normative claim “The hoped-for object is good” is true. The important normative claim is about the hoped-for object; it is not about the hoper.

Conclusions: If P is certain or virtually certain, you can't “hope” for it in the sense above. If P is bad, you also can't really “hope” for it in the sense above.

If P is good but extremely unlikely, you can't “hope” for it either but you can engage in magical thinking about it. The magical thinking is either epistemological magic or metaphysical magic (or both).

If you're a believer, and you think God can really do ANYTHING, and you think you can influence God's behavior, then nothing is prima facie “extremely unlikely”. So if P is good, you CAN fulfill all the epistemological and ethical conditions for hope above — but your hope is built on an extremely problematic conception of God. In other words, if you can hope for P and P is extremely unlikely, but there is a God, then hope relies on magical thinking on the field of metaphysics. You've just moved the magical thinking to a different place.

See? I think this captures my view. So while I think hope as defined above can exist (when the conditions above are met), I don't think it's any different from plain virtuous wanting: attuning one's wants to what good, and what's reasonable to anticipate actually occurring, given a reasonable metaphysics. In other words, I don't believe in any special VIRTUE of hope — and I think what a lot of people call hope is really faith, believing the patently unreasonable, engaging in magical thinking. And there ARE pragmatic arguments for faith (believing in magic). Plato would be holding his nose at this point, but maybe that's okay.

Sandy

-----Original Message-----

From: Erik

Sent: Friday, August 02, 2002 3:06 PM

Subject: one more thing

It just occurred to me that I might have the whole notion of hope wrong. Maybe those who hope really do think that by hoping they are helping to affect an outcome. Or that hoping “hard enough” is better than just hoping “a little”. That maybe hope is like “prayer lite”.

I guess I would have to ask a “hoper” what affect they're hoping has on the world.

Monday August 5

Dear Friends,

I guess the last message was on the grim side. Things remain grim but not exigent. Grant had a good day last Wednesday, had a lot of pain Thursday and Friday, got a new pain med Saturday and has been stable. The UTI is still there; his pee is grainy. The bronchial thing is still there. Today he coughed up so much gunk the Care Meridian nurse changed his bib four times in less than three hours. (Just FYI, nurses have very different thresholds for changing the bib; some change it if there's just a teaspoon of gunk on it, but some turn and fold and turn and fold until it's really crunchy. The guy today is a moderately fussy one.) Grant pointed immediately to “yucky” when I asked him how he felt today. In the last few months, he almost invariably has picked “yucky”. The next choice up is “not too bad”.

The worst choice in my “Today I feel ...” chart was originally “shitty”, BTW. But some of the Care Meridian staff were obviously not comfortable with that; some have small children, or have ideas about what's “appropriate in a hospital setting.” “Shitty” became “yucky,” which doesn't seem to bother anyone but isn't quite as eloquent, IMHO.

Grant seemed to want to use the computer today but by the time I got it set up, he'd started coughing, and after he coughed and got suctioned about twelve times and had a couple of albuterol treatments, he was too tired to do anything with the computer.

He still gave me a kiss, though.

Love, Sandy

Monday August 12

Dear Friends,

Grant seems sick again. He was up much of last night coughing and getting suctioned; then he slept from about 4:00AM until I arrived at about 2:30PM.

Grant began to vomit shortly after I arrived. He vomited 5 times before 7:30 PM. He wasn't vomiting up food, as far as I could tell — wrong color. He was so unresponsive all day he didn't even have the energy to give me a kiss. When I left, he seemed to be sleeping soundly.

Poor guy. I wonder what THIS is. Grant was having a lot of pain Saturday, so they started him on a new pain med (I don't know what) — maybe he's having a reaction to it?

When I talked with Dr. Miner re the pain on Saturday, I learned she is all gung-ho again about doing surgery on the wound, as a comfort measure, since the wound dressings cause him pain. He's got to get over this vomiting thing, of course, before they'll think about any kind of surgery.

Love, Sandy

Wednesday August 14

Dear Friends,

Grant seems to have stopped vomiting. He seems more comfortable, but the new pain medication is knocking him out. He doesn't nod or shake his head, and his eyes are closed most of the time. Even when his eyes are open, he doesn't make eye contact. This is new; he always made eye contact before. All I had to do was say “Look at me”. He's not even moving his eyes in response to requests. I'd like to ask him how the pain medication is working — maybe we're overdoing it. The doctor said we'd have to trade off pain relief for responsiveness, but this is a bigger change than I expected. For the first time in a long time, I don't feel he's really aware that I'm there.

I guess if it's really a choice between him having big-time pain OR being able to respond to me more, I still pick no pain for him. I hope the medicine is at least giving him some nice dreams.

Love, Sandy

Wednesday August 21

Dear Friends,

Things are the same as last week. Grant isn't very awake because of the pain medication. It's impossible to have any kind of sustained interchange with him. Occasionally he indicates he'd like to listen to music or watch TV, but by the time I turn on the TV and get his channel, he's asleep again.

We have decided to go ahead with the surgery on his hip. The doctors think the hip wound is the major source of his pain. Repair that, and we hope he won't need so much pain medication, and might eventually be able to be as continuously awake as he was a few months ago. It would be nice if he could read and watch TV and maybe even use the computer, etc. He used to be able to sustain active attention (e.g., reading) for as long as 45 minutes; and appeared to sustain passive attention (e.g., radio, TV) for somewhat longer.

The surgeon (the maggot doctor) is away on his honeymoon — who said HE could have a life? He'll be back next week, so maybe Grant's surgery could happen pretty soon.

I hope they are right about the source of pain. Grant's pee is still cloudy, and he still requires frequent suctioning and says it's hard to breathe. The wound is only one of many problems. The doctors focus on the wound only because it's something they might be able to fix — unlike the brain damage and quadriplegia.

Love, Sandy

Wednesday August 28

Dear Friends,

The plastic surgeon is back from his honeymoon, so we'll be scheduling Grant's hip surgery soon.

Grant continues to be sleepy, although some days are better than others. Tuesday I read him some articles from New Scientist. Sunday he listened to some NPR programs that Dick Sweet recorded for him. Grant likes the radio programs; sometimes it's the only thing he wants.

The therapists are “discharging” him from PT and OT because he can't/won't participate. That means they won't work with him anymore until he wakes up a bit. They can't justify billing the insurance for therapy sessions if he's not really participating.

Therese, the OT, thinks Grant is “playing possum.” She goes into his room every day as soon as she sees him with eyes open watching TV; but she says he closes his eyes when she asks if he wants to work and he refuses to open his eyes (or perhaps can't). She thinks he might well be PRETENDING to be asleep, out of depression or sheer orneriness. She says she's seen this behavior with other patients. Poor Therese — I think she feels bad because he always liked her and was willing to work with her.

I proposed to Therese that she throw her professional weight behind getting him some kind of therapy for depression, and she did. One of the other patients has had periods of bad depression, and a social worker was approved for him who specializes in this kind of case. The social worker is a talk therapist. It can't hurt, I suppose. I also recommended upping his anti-depressants.

I have been weepy and a little sick the last week or so, too — end-of-summer blues, I guess. I hope it's not rubbing off on him.

There are two new patients at Care Meridian. Mr. Tan has left because Mrs. Tan couldn't afford the place. The next new patient will probably go in Grant's room.

I start school tomorrow.

Love, Sandy

-----Original Message-----

From: Erik Tirums

Sent: Thursday, August 29, 2002 12:09 PM

Subject: RE: Grant Wednesday August 28, 2002

Hi Sandy,

I'm thinking through many different things regarding Grant's condition. I'm curious... has Grant ever said/indicated anything about how he feels from a mental/emotional point of view? The physical seems to be clear... at least that's what the doctors should be able to tell you. I wonder how much they take into account what he might be thinking regarding all of this. He definitely sounds like a very strong person. I'm not sure I would hold up as well given the circumstances. Has he ever expressed any wishes concerning his condition?

Of course, feel free to tell me it's none of my business, or that I have no idea what I'm talking about. I'm not living through this.

Are you going to teaching online mostly? Do you ever talk to Mr. C anymore, or see him?

All questions and no answers... I'm a typical ancient Greek Skeptic.... save the fact I'm not Greek, or ancient (yet).

Take care,

Erik

RE: Grant Wednesday August 28, 2002

Hi Erik,

It's very hard to tell WHETHER Grant thinks in any sustained way, let alone what. I was really hoping that once we got the computer system set up (EZ-Keys by Words+ — the same thing Stephen Hawking uses), he'd take to it right away and real communication would begin. That didn't happen. He has “written” his name, and “I love you,” but nothing else, even when I ask him very specific questions. I have talked to him directly about the philosophical question that seems most urgent to me: whether, given the probable BEST-case scenario (never coming home or talking or eating or taking a shit by himself, and being totally dependent on others for literally everything) — whether he thinks that life would be worth living. It's not really a human life, especially when you add that he'll be feeling sick a lot (he has so many potential infection sites, something is always brewing) and medicated and in pain and not even awake most of the time. AND unable to sustain attention long enough to type more than a few characters at a time. (Mostly he writes gibberish.) I.e., unable to answer emails or tell the nurses what he needs in any detail. He has been at this level for about a year now, so it's not likely he'll get better.

I have never been able to address these questions to him without crying, and that's all he seems to notice, and he starts to cry too (though his tear ducts don't work right anymore), and then he produces all this extra fluid, and he can't swallow, and it goes into his lungs, and he has to be suctioned, which looks like a kind of torture. We never talked about this when he was well — he was always SO well, and what happened to him is really almost unimaginable anyhow. (As I may have remarked, the chances of getting what he got are, as far as I can tell, about the same as the chances of spontaneous human combustion. The chances of getting killed by lightning are MUCH higher.)

I've been reading Peter Singer, who is refreshingly honest about this kind of case. Singer is a total utilitarian — suffering is bad, resources should be allocated to benefit the greatest number, etc. There is no good utilitarian argument for keeping Grant alive. If he did not happen to be genetically human, we would have done the kind thing long ago. The kind thing, I think, would be to end his suffering. So while I am happy he receives such excellent care, it destroys me because I don't see the point anymore. I am not ready to tell them to stop feeding him, so I am just waiting for some infection to do him in, and meanwhile, we continue to torture him. I'm pretty sure that I could order all treatment to cease, and nobody would challenge me. But I am just not ready to do this. At least now I can kiss him and smell him, etc., so I can breathe right sometimes.

This is the sort of decision William James talks about. There's no “answer” and because it's such a weighty matter, I postpone. But postponing IS answering (it is saying “Let him suffer”) — and this seems not the best answer. So we both go on suffering. Is there any kind of answer here? What do you think? I often feel I am being selfish and cowardly, even though everyone tells me I am so brave. But what an appalling thing moral reason is telling me to do here!

Thanks for reading this. You don't have to answer the ethical questions, but I haven't posed the problem this way to anyone else (the religious people think they know and the secular people think they can't have an opinion). This seems really uncharted territory — let's boldly go ... see where the argument goes.

Best, Sandy

-----Original Message-----

From: Tobias Hoellrich

Sent: Thursday, August 29, 2002 11:52 AM

Subject: What a blessing!

Sandy - I've been following the emails you've sent to Marianne Deaton here at Adobe for quite a while now. While I don't know you personally, I've been working with Grant on and off. Most of the time it was limited to coffee-area complaints about how stupid some things at Adobe were (and still are). Grant just loves to rant and I was always there to chime in. I value your husband and respect him - he is one of those unique people at Adobe that make this place special. It is a blessing that you are in his life! While I can't possibly imagine myself in the same situation you are, I hope I will show the same strength and courage if I ever need to be there for somebody else - like you are for Grant now.

With warmest regards Tobias

RE: What a blessing!

Thank you, Tobias.

Thursday September 5

Dear Friends,

This week has been pretty much the same as last. Grant's been mostly out of it, though he had a good day Monday — he listened to NPR and indicated he wanted to use the computer. I set it up, but then he didn't do anything with it. He is bending his legs, and they are unable to unbend them now. They have him on his side a lot to help drain his lungs, so with his bent legs and sideways position and sleepiness, he often looks like he's reverting to the fetal position.

The plastic surgeon was in to look at the wound, but I still haven't heard anything definite about plans for surgery.

The Care Meridian soap opera continues. Dr. Leung is gone, but now the company is on a money-saving binge, and they laid off the handyperson, for monetary reasons (they said). She had been involved in Care Meridian Gilroy from the very start — she had helped build the building, in fact, and she was the only one who knew how everything in the physical plant worked. The lock on the bathroom door broke a few days ago, and it's not fixed yet. They also fired one of the LVNs (the guy), who was pretty good (I thought). I am seeing some big personality conflicts between the staff and the current on-site boss, who is a “company man” from out of town, and does things by the book. Neither of the terminated employees got along with him. The guy seems very competent, but also a bit intense and a micro-manager — I don't think I would like working for him. He's been around full-time since the DON quit. Patient care seems unaffected, as far as I can tell. It's possible the temporary boss is making things better, but staff seem happier when he's not around. He will leave when a new DON comes on board.

Poor Mr. Tan, who moved out last week, has already developed a bedsore at his new facility. Mrs. Tan is understandably very upset and full of regret about having moved him, and she's talking to Care Meridian about bringing him back. That's chilling. Mr. Tan is pretty able-bodied compared to Grant. What would happen to Grant in a less attentive setting?

Love, Sandy

-----Original Message-----

From: Sandy LaFave [mailto:sandy_lafave@westvalley.edu]

Sent: Tuesday, August 06, 2002 7:11 PM

To: Ekaterina Vavova

Dear Katia,

Sorry I haven't replied sooner. I've been finishing my application for Canadian citizenship; my brother and I are applying together. It seems to be a sure thing, because our mother was Canadian at the time of our births. What a hassle, though! You're probably familiar with this sort of bureaucratic stuff. The plus side is that the Canadian consulate has been EXTREMELY efficient and helpful — they actually answer questions and you can always talk to a human. Now THAT's my kind of country!

Grant's not any better. I am attaching the last few emails below. I send updates about once a week now to a large list; I'll put you on the list unless you tell me otherwise. Let me know when your email address changes — you're not going to be a hotmail girl forever, I imagine.

I have posted the first month or so of these emails at http://www.punkalunka.org, so interested people can read a kind of diary of that early time. I have a lot more of that kind of material — it's been over 16 months now. Maybe I'll get around to posting more of it some time. People say it's interesting and addictive, like a soap opera, I guess. The medical drama never ends, but the outrageously improbable stuff has actually happened. I've been thinking how unlikely Grant's illness was: apparently there have been only 30 recorded cases, ever, in the US. In other words, many more people die every year by being struck by lightning. There are about as many cases of his illness as of spontaneous human combustion!

Grant's picture was taken at his care facility. It's a wonderful place, not like a hospital. It's a 5-bedroom house on a few acres in Gilroy, in the country, with horse farms on both sides. You can tell it's a catastrophic-care place only by the extremely wide doorways and ramps everywhere. That and the fact that it has only one bathroom — the residents all have Foley catheters and colostomies, and are mostly confined to their beds. There's lots of staff and I think he's getting the best possible care. He's just not getting better.

I don't believe Mr. C plays much any more, so I think you got to see something unusual! I hear he's very good.

What an exciting time in your life! I know you will do good work and good deeds. I wish you all the best.

Sandy

Insurance questions for Diana

Hi Joe,

This is really for Diana. I'd appreciate any advice, since the ambulance company is threatening to go to a collection agency now.

I think I'm getting the runaround from Blue Shield about their coordination of benefits for Grant's ambulance transports.

The attached letter explains the situation.

Blue Shield's answer to my letter:

“A review of the claim reveals that it was correctly processed and paid in accordance with the terms of the West Valley Mission plan. The reason that we paid on this claim is that the paid amount of $542.35 from the primary carrier did not exceed our allowed amount of $793.98. Therefore we paid the difference between there (sic) paid amount from the primary carrier and our allowed amount.”

No mention is made in the response of the other claims paid. In ALL the other cases, the total amount paid (Aetna payment plus Blue Shield payment) exceeded $793.98 — usually by hundreds of dollars.

It doesn't add up, does it? Any suggestions?

Thanks!

Sandy

Tuesday September 17

Dear Friends,

I didn't send an update last week because there was nothing much to tell. Grant was up in the wheelchair a couple of times, for short periods — shorter to avoid tearing the sacral wound. That used to be the big wound, and it has healed, but the new skin still tears apart if there's any shearing force, like whenever they take him out of bed. Tearing takes a long time to heal (unlike a clean cut). So they're bathing him in the tub far less often also. I haven't heard anything about plans for the trochanter wound surgery. It was supposed to be sometime this month, but I still don't know. None of the nurses have heard either. Dr. Miner was in last Saturday, and I was going to ask her then, but she was gone before I had a chance.

Grant's sister Leslie was here for a couple of days last week. She hadn't seen Grant for about a year, and she thought he looked better than he had then.

It turns out many of the Adobe folks know one of the new patients. The new guy is in hi-tech also, and has connections with Stanford and PARC. He had a stroke, but seems to be doing very well — he seems to be actually getting better daily, actually recovering. Grant is still pretty much out of it. It's hard. When Grant's like this, it seems pointless for me to be at Care Meridian — so lately I've been hanging out there only a couple of hours a day. That frees up a little time for me, and I can use the time, so I'm glad to have it, but then I feel guilty, too. How can I feel relief at NOT being around him? I feel like I'm betraying him. He may need me now as much as ever, for all I know. But I don't seem to be making much of a difference anymore. Grant does not answer most of my questions. He doesn't express any preferences for any activities. I don't know if he doesn't understand what I'm asking, or whether he understands perfectly well and has decided not to respond. He keeps his eyes open but doesn't look at me. He stares at the ceiling. I wonder if I'm bothering him, or if he's mad at me, though I also know his state of mind probably has nothing to do with me. Most of the time he just seems to have LOST his mind, in every sense.

I have been thinking how his brain stem got all flooded — how if you soaked a fine violin in water for eight weeks, it would get permanently bent and swollen. You wouldn't have a playable instrument anymore. Some things can't be mended.

I am busy with teaching again, and I'm enjoying it, so that's keeping me plugging along.

Love, Sandy

Sorel and Sartre

Hello all!

Thanks for the cartoon, Tom. I think this counts as “educational purposes.”

I. “Common Knowledge” in the philosophy world: — J-P slept around a lot more than Simone. He smoked like a chimney and wasn't particularly clean. He was not a nice person. — Simone took a lot of crap from J-P. He did write her long letters about his sexual conquests. She was brought up in a strict Catholic environment, and (in my opinion) had the usual masochistic and voyeuristic tendencies. Her novels of the 40's are really interesting this way. Read The Mandarins, or L'Invitee (She Came to Stay). Simone is one angry woman. In L'Invitee the Simone character KILLS the young cutie the J-P character is smitten with.

II. Omitted info: — Sartre had bad eye problems from childhood; hence the bug-eyed look and Coke-bottle glasses. If he got out of the Nazi camp because of eye problems, at least he wasn't making them up. — Simone had at least one big love affair, too, with Nelson Algren. See “The Mandarins”.

III. Problematic Issues: — The brief Sartre bios I have seen say he was active in the Resistance in 1942-43. Sorel says Sartre worked for a “collaborationist weekly” during those years. I don't know the facts here. I don't know what Sorel considers collaborationist, but I seem to recall (from “The Mandarins”) that J-P and his crowd thought THEY were using the Nazis, not vice-versa. — The Sartre bios say he “escaped” from the Nazi camp. I don't know. I would not be surprised if strings were pulled on J-P's behalf; he was always doted on and made much of. — I think it's misleading to say “No Exit”'s message was “approved” by the Nazis. “Hell is other people” doesn't strike me as a particularly Nazi message. I don't think the Nazis were misanthropic toward “people” in general — just toward specific groups of people, right? — Sartre did not join either the Gaullists or the Communists during WWII; the “Socialism and Liberty” movement did fail. But I always thought “Socialism and Liberty” failed because it wasn't different enough from the other left-wing movements, so it was redundant.

News to me (but apparently true): — The Arlette business. Details matter in moral evaluation, though. If Sartre adopted Arlette without Simone's knowledge, that might make him a bit more slimey. But the adoption apparently wasn't secret for long. And given the history and general S/M tone of the J-P/Simone relationship, I'm not sure Simone would necessarily have felt wronged or betrayed. She and J-P were always talking about how they were each complete beings and NOT responsible to the other. Remember they were existentialists: they thought an act became “morally” warranted simply by being CHOSEN.

Arlette is still using Sartre's name, and is apparently doing scholarly philosophical work, but nothing very interesting.

As usual, things are complicated.

Best, Sandy

private-hire insurance case manager "Hi Linda,

I enjoyed Georgia's drawing. What energy!

My brother Joe (older, same mother, same father) got remarried to a nurse who now works as a case manager for Blue Shield in New Jersey. I talk to her occasionally about medical billing issues.

She mentioned the other day that a new job market now exists for nurses and social workers. People like you and me with complicated medical insurance bills now hire nurses or social workers to deal with the insurance companies. She says it's a growing industry in New Jersey, where she lives. These people are usually discharge planners or hospital case managers who know the ins and outs of the insurance system, and they moonlight or set up shop as private consultants. She says they charge c. $50 an hour, and for most people, this would be prohibitively expensive. But for me, at least, it would be worth it, given the number and size of Grant's bills. I thought you might be interested also, just to know you might be able to offload some of your work. These people will do the phone calls and complaining and negotiating, etc.

Apparently relatives of elderly people often use private-hire case managers, e.g., when the elderly person lives far from the responsible relative.

http://www.caremanager.org/gcm/ProfCareManagers.htm

I haven't found anything on the net re the use of private-duty case managers for people with disabilities, but I expect they're out there. I will not be legally responsible for Grant's medical bills after we are divorced, but I intend to continue to handle them. Having someone else in the loop would be very helpful.

Best to you and Bob and Georgia,

Sandy

RE: Friday Evening "Hi Dennis!

Don't feel guilty — I think I said I would put you on the update list and I never did. Things were looking very grim last Nov-Dec, so I suppose I just forgot. At that time, Grant had a life-threatening infection, and we were expecting him to die.

Grant isn't better and he isn't worse. We don't worry about him dying every day now, but he's never really come back either. Occasionally he is able to answer yes/no questions, but he doesn't ever “say” anything, even though he has a good computer set-up now, and enough head control to type messages. But he never “says” much of anything. He can't sustain attention long enough to finish spelling out more than two or three words, so you can't really carry on anything like a conversation with him. It's a great loss for me, because he used to be so good to talk to.

I'll put you on the mailing list at this AOL address, unless you'd prefer I use a different one.

Are you planning to come to SF at Thanksgiving? It would be nice to see you. My schedule is a little more predictable now, though Grant's condition is always subject to sudden change. He is still in Gilroy, and I still visit him every day.

What's up with you?

Love,

Sandy

-----Original Message----- From: Wolvertond@aol.com [mailto:Wolvertond@aol.com] Sent: Friday, September 27, 2002 8:37 PM To: sandy_lafave@wvmccd.cc.ca.us Subject: Friday Evening

Hi Sandy:

I feel a little guilty about not asking you earlier how Grant is doing. I have thought about him and you from time to time. I found e mail correspondence on your web site awhile ago, but it ended in April 2001 I think. It did give me a better understanding of the condition, however.

It would be great to hear from you.

Dennis

Wednesday September 25

Dear Friends,

On Sept 26, Grant will have been in Care Meridian a full year! He was moved from Los Gatos on Sept 26, 2001. Grant was better Wednesday than he's been in a long time. He was answering yes/no questions by nodding and shaking his head — I have not seen him this responsive in a long time. His face was alive. He indicated he's not in pain, but feels very tired. I don't know if this was just a particularly good day, or the beginning of a trend. He has lost a lot of weight in the last year (30 lbs). My ankles are wider than his now. Also, his albumin levels are also down. For this reason, the hip surgery has been postponed. They will re-evaluate in October.

Love,

Sandy

Thursday October 3, 2002

Dear Friends,

Grant's alertness last week has not persisted, unfortunately. He's been more out of it than usual the last couple of days.

There is good news on the wound front. The trochanter wound seems to be starting to heal by itself — this was always a possibility, of course. If things keep on this track, he won't need surgery at all. The wound has not healed enough to warrant reducing the pain meds. In fact, he was having some pain today — maybe the new pain is because he's growing back the pain receptors.

Insurance matters are taking a bizarre and mildly worrisome turn. Aetna assigned him a case manager (Kay) a long time ago, and Kay suddenly called me out of the blue to ask if I wanted to “accept case management services.” I said I thought Grant was already getting case management services from both Care Meridian and Aetna, so was she offering me something different from that? Kay said something about having me “in the loop” so we could “make the most efficient use of his benefits.” I still didn't understand, so I asked the Care Meridian case manager (Mary Beth) if she could decode that language. Mary Beth said that since Grant's stopped making progress on his therapy (because of the pain meds), Aetna is probably starting to think about moving him to a less expensive place, but since Aetna doesn't have a particularly strong case for moving him, they want to “get to know me” to see how much “opposition from the family” they would face. Is it possible they would be that calculating? I can hardly believe it.

Mary Beth says not to worry about it too much, since no other place within a reasonable distance would take him anyway, with the trach and all the other tubes. She says he will probably always have too many medical needs to be in a skilled nursing facility. And Care Meridian, being in Gilroy, is already the best deal on sub-acute care in the area. Still ... a bit chilling if Mary Beth is reading things right.

On a less paranoid note, I've been reading Andrew Solomon's The Noonday Demon: An Atlas of Depression. He talks a little about how some people use faith as a way to handle depression. He interviews a depressed woman of faith named Maggie. She says:

“... The Church says we should act first within our communities, and then as members of the body of Christ, and then as members of the human race. It's so non-twenty-first-century American, but it's so important. I take from Einstein the idea that humans are laboring under an 'optical delusion' that each of them is separate from the others, and from the rest of the material world, and from the universe — when in fact we are all entirely interconnected parts of the universe. For me, Christianity is the study of what real love, useful love consists of — and of what constitutes attention. People think that Christianity is against pleasure, as it sometimes is; but it's very, very pro-joy. You're aiming for joy that will never go away, no matter what kind of pain you're in. But of course you still go through the pain. I asked my priest, when I wanted to kill myself, 'What's the purpose of this suffering?' and he said, 'I hate sentences that have the word suffering and the word purpose in them. Suffering is just suffering. But I do think that God is with you in this, though I doubt you can sense him at all.' I asked how I could put something like this in God's hands, and he said, 'There's no “put,” Maggie. That's just where it is.'“ (page 132)

I am not particularly Christian, but I like this.

Love, Sandy

Wednesday October 9

Dear Friends,

Grant's been pretty much the same. He had an awful day on Sunday, with lots of vomiting and shortness of breath. He was also coughing up feeding, which means food got into his lungs. This is dangerous because it can result in “aspiration pneumonia” — the food bacteria starting to multiply in the lungs.

He looked like a train wreck, and didn't wake up at all during my visit. He had a chest x-ray Monday to make sure food didn't get in his lungs. He also had a “chem-20” (blood tests). The tests all came up negative. A couple of the other guys at Care Meridian had vomited also, and everyone seems better now.

Grant's been up in the wheelchair a couple of times this week — finally. Getting up is very good for his alertness, and he hasn't been able to get up in a couple of weeks because of previous tearing of the sacral wound. The staff says he's been more alert — though I haven't seen it. Therese said he was participating well in his exercises.

The Care Meridian folks were particularly delighted by a gift for Grant from some of our neighbors' kids. It was a book of drawings. They called it “Grant's Hospital Book”. The large envelope containing the book showed, among other things, a little girl saying, “I love this hospital!!!!” and the book was “detacated (sic) to the workers of this hospital”. One of the drawings was an angel bear — a big bear with wings and a halo. Grant and I used to call ourselves “the Pixel and the Bear”.

My sister-in-law Diana works as a case manager in New Jersey, and she said that the “case management services” I mentioned in the last note are actually a good thing for both the insurance company and the patient and the family, just as Kay of Aetna said. Diana suggested I get documentation of the program from Aetna, so I can see what they say about it. Yesterday I heard Kay had been replaced! I hope she didn't get in trouble for not signing us up.

Love, Sandy

Thanks for writing again

Hi Erik,

I actually composed a rather long response to your last email, and then had second thoughts. My reply seemed sort of narcissistic and half-baked. I put it in the Drafts folder, and have been intending to get back to it.

I was pretty interested in what you said about the pointlessness of a lot of philosophy for real-life problem-solving. Sometimes when I read journals and go to philosophy conferences, I do think philosophy is just silly. And I am very put off by many philosophers personally — a lot of them are just weenie-wavers. ( I am just beginning to realize that this impression of philosophers comes from my grad school days, though, in the 70's when everything was complicated by the fact that I was a woman in a world of men and many of them really WERE defensive or predatory.)

I need to reason about stuff myself, though, because I believe that when it comes to feelings, I can't necessarily be trusted. My feelings arrive on the scene too late, or, if they're timely, I can't figure out what they are. And if I CAN figure out how they feel, and it's negative, I get suspicious that it's the depression talking. So I need to DEDUCE my feelings. Prozac helps me get good data. Maybe I'm a pretty typical philosopher this way. A lot of us were brought up not to pay attention to our feelings, so we learn not to, and that takes a toll. As Freud noticed, the emotions don't like to be ignored. If you don't pay attention to them because you're afraid they'll be sinful or scary and overwhelming and inchoate and too much to handle, they BECOME exactly that. I totally understand Plato's ambivalence about feelings — I understand how he can talk about them as though they are wild animals.

I don't disagree with you that this will get resolved more by feelings than by reason. I also don't believe feelings are necessarily reliable guides for action — the real problem in cases like this, I think, is that reason only goes so far.

School is okay. Most of the students are nice — clueness, but nice. I read an essay today in which a student spelled “immense”"emence”. That one took me a few seconds.

I go to our house in Aptos almost every Saturday night. I go alone. It's quiet and beautiful — you can see all of Monterey Bay from the house. I'd be happy to show it to you if you're ever in the area. It's in the hills about 4 miles from the ocean. So it's not too foggy or chilly. It's a spectacular setting. I can breathe and let my soul settle down. Maybe someday when I'm single I'll try it out for a romantic thing — it's perfect for that, too.

I love reading Dennett. He's so clear and funny. I haven't read much of Consciousness Explained. When I prep for Philosophy of the Person, I still have a hard time trying to remember how the views of Fodor and Searle and Dennett and Chalmers, et al. are really different from one another. I want to tell them to give it a rest, recognize how much they agree with one another, and start talking to the 99% of folks who still think dualism makes sense. What a waste of wit.

Thanks for writing again. I know it was my turn. I hadn't forgotten.

Sandy

-----Original Message-----

From: Erik Tirums

Sent: Monday, September 16, 2002 4:13 PM

Subject: RE: Grant Wednesday August 28, 2002

Hi Sandy,

I wonder what Plato or Socrates would say about this. I think of the Greeks as being still very much “human”, while struggling to come up with reasons for WHY they thought what they thought.

I also think of a comment by one of my professors at UCSC, who said that doing philosophy is like therapy. It helps us understand why we think what we do. Otherwise we are just reading philosophy. He attributed that idea to Wittgenstein... although I never saw it myself.

Rhetorical question: are we reading philosophy or doing philosophy. Presumably to have an impact on the world (and not just our neurons) we need to be doing it. Are we exercising our minds and keeping our intellects entertained? are we looking for a way to live? are we looking for justification for our actions, which we have no intent of changing? Or, maybe we have the intent, but our old patterns of behaviour stay fixed nonetheless.

I think this question is why some people (many people) think that philosophers have no affect on the world. They think of philosophers as living in the great ivory tower, or even as Aristophanes portrayed them in The Clouds; far removed from reality. Maybe, as long as what we are doing works, we don't need to use our philosophy.

How do you weigh the smell of a loved one against an argument that makes perfect sense to you????

My answer.... the answer for me.... is probably getting outside of the scope of reason in the normal sense. There is no argument that could convince me one way or another. I would really have to FEEL that it was right. And if there's no argument that could convince me one way or another, then I'm outside the scope of arguments. It's not dogma or faith, because there are no beliefs in the equation.

So I'm now at the question of SHOULD I reject arguments in this case. I think an answer to that question could be uncovered, but again, I don't think it would have an affect on the outcome. So, in that sense, it's not meaningful if we are DOING philosophy.

These are just some of my thoughts.

Take care, Erik

RE: Thanks for writing again

Hi Erik,

I like to think Prozac enables me to be my real self — if the notion of a “real self” means anything in the first place. I think the existentialists are right about how you continually have to choose a self. I choose my Prozac self. My paper on Prozac pretty much sums up my thinking about antidepressants.

I read this for the philosophy club a few years ago, so you may have heard it.

I've been thinking about how when people make out physicians' directives (the instructions re what they want done/not done in the event of catastrophic illness), they are in effect choosing a self. “I AM the able-bodied one; if you should encounter a body that happens to be physically continuous with my current body, and the body you encounter is so damaged it can remain alive only by taking extreme measures, do nothing; that's NOT ME. You're not hurting me by letting that body go; the REAL me (the able-bodied me) is already gone.” I think Grant would endorse this line of thought; that's why the issue of withholding treatment from him is living, momentous, and forced.

Paxil is the same kind of drug as Prozac — an SSRI (selective serotonin reuptake inhibitor). These are most excellent drugs, IMHO.

Sandy

-----Original Message-----

From: Erik Tirums

Sent: Friday, October 11, 2002 3:21 PM

Subject: RE: Thanks for writing again

Hi Sandy,

Interestingly enough, I have not taken the medication factor into account, for myself, in quite a while. I've been taking Paxil for almost 4 years now... for panic attacks and “generalized anxiety”. I had panic attacks for years before I ever got treated.

I wonder if the emotions I have “faith in” sometimes are really as reliable as I think... given the brain-altering chemicals I ingest everyday. I'm now wondering (and remembering, to a degree) about the non-Paxil data I get/got. Strange situation. In a way, I almost forgot that I am not in my natural state... since after 4 years I just seem like me.

I need to think about this some more. I just figured I would pass along my thoughts.

Take care, Erik

Tuesday October 15, 2002

Dear Friends,

The usual in and out. Grant was pretty sharp on Sunday and yesterday, but mostly out of it again today. Pasquelina, one of his nurses, heard me calling him “my in-and-out burger” (there's an In-and-Out Burger at the Gilroy mall). She suggested I should call him “my in-and-out tamale”. Is that funny? Maybe you had to be there.

They have decided to increase his Prozac — can't hurt, IMHO.

Today he was awake enough to listen to me read a little of a New Scientist article about software patents; naturally, GNU came up, and Grant did a big eye-roll at the mention of Richard Stallman's name. That cracked me up. (For non-computer people: Richard Stallman is legendary oddball and a big advocate of open source — i.e., free — software. Grant likes open source, too, but he and Stallman have had some disagreements about how much should be free.)

Yeah, he's still in there.

Love, Sandy

RE: choices, etc

Hi Erik,

I think you've said it very well. For a human, being alive is not necessarily a value in itself. A minimal degree of autonomy seems necessary also, because the autonomy enables HUMAN being, as opposed to animal or inanimate being.

Autonomy meant a lot to Grant. When I met him (he was 36), he had never been married. He had had only a couple of serious relationships with women, and they hadn't lasted very long. We didn't get married for another 7 years, and got married for only the most pragmatic and unromantic reasons (insurance coverage). He also didn't have close male friends. He was very much a loner. After reading Oliver Sacks, he concluded that he was probably a little autistic (not that that makes any difference — you get the brain chemistry you get). He was the sort of person who would have been content to live alone among the penguins in Antartica for years at a time. He was extremely independent; I liked that about him. I think autonomy was more important to him than it is to most people. He basically didn't think of himself as part of the human race; he used to joke a lot about how he wished the aliens would come and take him back to his home planet, because he clearly wasn't from this planet. He hadn't had very pleasant experiences with humans, especially his father, so he was wary. But he didn't have a trace of self-pity; he did EST in the 70's and that reinforced his notions of independence and personal responsibility even more. (You have to forgive him for EST — he was an engineer, after all, and hadn't had any philosophy training.)

His identity was very much tied to exploring the world (he once spent a year studying the C. elegans nematode, just for fun) and making useful and unique machines. When he was a kid, he had radio-controlled the curtains in his bedroom, so they'd automatically open and close at certain times of day; that was so Grant. He was the only person I've ever met who was never bored. He had endless curiosity about the natural world. He loved to loved to create “intelligent” machines to do boring tasks. When he was hospitalized, I was at a loss for how to operate our house: the VCR, the answering machine, the sprinklers, the lights, the heat, etc. all ran according to programs he had designed.

I would never have found all that so charming if not for his general personal sweetness and delightfulness. He was a light sleeper — the most awake person I've ever known — always witty, fun to be with, good to look at, happy to see me. He's still good to look at, but all the other stuff is gone. He is no longer himself, most of the time. He doesn't have continuous or complete consciousness in the first place, and when he is more “there,” there's nothing much to be there FOR. A good day for him is one in which he doesn't need suction, and has a good BM, and maybe gets to look out the window at birds, or listen to me read for a few minutes before he falls asleep again. I'm not sure I'd call this HUMAN being, and I definitely wouldn't call this GRANT being. I don't think he would either.

This is way too sad.

Sandy

-----Original Message-----

From: Erik Tirums

Sent: Monday, October 14, 2002 12:54 AM

Subject: choices, etc

Hello again,

You made some good points in your paper on anti-depressants. For me, the issue is very similar. But, that's another topic.

In a way... an important way... the issues you raised in the Prozac paper, and the issue of a physician's directive, are tied together. If we assume that life is basically pointless in the larger scheme of things, then we might be concerned more with HOW we get through life. To use a driving analogy, once we realize that we are not in a race (no goal or finish line), then we might start to think about the drive itself. If we can make some choices about how our drive is, that seems to be a good thing. I might choose to take a drive up Highway 1, instead of being stuck in the traffic of Manhattan.

One instinctive “goal” is the goal of self-preservation. We generally get out of the way of speeding cars, stay away from deep lakes if we can't swim, etc. If presented with a life-threatening situation, we tend to do things that keep us alive. (Note: if it were otherwise, we might have to re-think Darwin's theories. If a species contains members, a majority of which tend not to stay alive (at least long enough to reproduce), then over time that species' survival rate will drop to zero.) That's our “mammalian directive”, I like to call it. BUT, it's not our HUMAN directive. Our human directive, if there is one at all, seems to be our choice. So, LIVING, by itself, is not a special human goal. LIVING, by itself, has no special meaning in the secular human case. We aren't “living for God”, or living to “please Him”. So, LIVING is not an end in itself, in this case. As rational human adults, we are living because we choose to. What happens when we lose that choice (?)

Assuming we have the opportunity to complete a legal document, such as a physician's directive, we can choose how our life will be treated once it is out of our hands. As you said, by completing a physician's directive, we are choosing a self. We are choosing to be a reasonably healthy person.

In Grant's case, he no longer has the choice of HOW he gets to live. He no longer has the choice of WHETHER he lives or not. I've heard people say, when a person dies after a long illness, “He finally decided it was time to go.” I'm not sure that has any meaningful truth value. There is no discernable “decision” being made, that I can see. I didn't know Grant at all, so I can't even begin to guess what sort of views he had on his life, or on life in general.

Did the existentialists say anything about what the situation is when we LOSE our power to choose? In a rough way, Sartre says that we always have a choice. I'm not sure about the other philosophers. One possible answer is that once we lose our power to choose, we are no longer living a human life.

This one almost went in the “Drafts” folder.

Take care, Erik

Thursday October 24, 2002

Dear Friends,

Because Grant's been so stable lately, they've decided he doesn't need to have a nurse or CNA constantly with him to monitor his vital signs while he's up. So Monday (3 days ago) was supposed to be the first time I got to take him outside in the chair by myself! I was really looking forward to it. I brought him a hat, and the weather was nice. But Monday's sitting was canceled; his sacral wound had become blistered the previous Friday. You have to be really careful with wounds, even after they're healed; they tend to be the first places to break down again. The blister is healing now, so tentatively we're going to get him up tomorrow. Meanwhile, poor baby, he hasn't been up all week, and that seems to make him less alert — depressed, disappointed, PO'd; who knows?

Because of the blistering, he also hasn't had a bath in over a week. Transferring him into the tub poses dangers of shearing the sacral wound; sitting in the tub puts pressure on it, and gets it all soaked besides. Apparently dry is better.

He's been pretty zoned all this week. Yesterday and today he indicated he felt like a “2” (out of 10) — that's the lowest number he ever gives. Therese said he was alert for her in the morning on Tuesday, though. Craig Forney came to visit him today. Craig and I were talking, and Grant was staring hard at Craig — the kind of stare you get from an 8-month-old kid. Not a lot of focus. I asked Grant if he was listening. Since he hadn't responded to me for several days, I didn't expect he'd do anything. To my surprise, he nodded.

I hope there's not more trouble with the wound, so he can get in the chair more. Now that it's getting dark early, and I can take him out by myself, I'd like to take him out to see the stars. He can't use binoculars, but it's nice and dark in the backyard at Care Meridian — much darker than in San Jose.

Love, Sandy

Wednesday October 30

Dear Friends,

Grant's been more awake the last couple of days. Yesterday we even did a little reading. He did good work with Therese yesterday and today we finally got to go outside. I brought his big floppy sun hat; he wore his shades and looked very cool.

He's been smart the last couple of days. I was reading him a strange article from New Scientist about Elliott waves, which form according to the Fibonacci numbers, and supposedly govern all sorts of surprising phenomena, including the Dow Jones index; Grant widened his eyes at appropriate times. I asked him if he remembered Fibonacci numbers (I didn't); he, of course, nodded.

Yesterday he had enough mouth and breath control to form kisses — something he hasn't done in a long time.

Love, Sandy

Wednesday November 6

Dear Friends,

Yesterday they changed his Foley catheter and there was a lot of bleeding. Many hours passed, pee still wasn't coming out. So they changed the catheter again. Still no pee. They kept coming in every few hours and injecting water up the tube to try to get things going. Apparently sediment builds up, and the line gets blocked. Also (older guys all know this, I guess) the prostate gets irritated and swollen, and so they can't get the kind of flow they'd like. There was more blood. They finally got the flow of pee started last night, but the same scenario was re-enacted today — more blood, another catheter change. No one seems very worried. They can do things for this problem; it's pretty common for guys with Foleys.

Yesterday the guy who built Grant's wheelchair finally came to adjust it for him. Grant's lost about 40 pounds since he was measured for the chair (in Sept 01). Transferring him in and out of the chair today caused the Foley to start bleeding again. Seems like it's always something.

You'd think of all the things that might hurt, the Foley would be one of the worst but apparently it's not. I asked Grant if he was having pain there and he indicated no.

Grant's been pretty out of it all week, but came around quite a bit today. We went outside for over an hour. I gave him a haircut. I think he liked that. I did. I've been his barber for the last 15 years or so. He was even cooperating by moving his head up, down, etc., a little like he used to do. When I left tonight, he seemed to be contentedly watching Tech TV.

Love, Sandy

Thursday November 14

Dear Friends,

Grant's had an unexpectedly good week. He's been alert enough to use his call button, and has been so responsive that Therese wants him to restart speech therapy. Today Grant called the nurse in and made three very clear requests using the mouth stick. The newer Care Meridian staff have never seen that kind of behavior from him, and they're very excited. I am pleased but more guardedly optimistic — periods like this have happened before but never lasted. Also, when he is more alert, he is more aware of his situation, and more sad.

Anyway, he's been wanting me to read to him, and we are able to “talk” about the articles. (“Do you think this is cool technology?” NOD. “This sounds like BS to me. Does it make any sense to you? SHAKES HEAD NO. “Are Celsius and Centigrade the same thing?” NOD. Etc.)

He has not wanted to use the computer to read or write by himself, but he's indicated he's willing to try again soon. He agreed he would like to be able to communicate more, and that he feels “far away” from everybody.

So we'll see what happens.

Love, Sandy

Monday November 25

Dear Friends,

It's the usual up and down. Grant was doing very well last time I wrote, then had a week or so of Sleepy Bear, but seemed better again yesterday. He read a little by himself — something he hasn't done in a long time. His favorite magazine (New Scientist) changed their format and went to a smaller type face a couple of months ago, and Grant doesn't seem to like the smaller print. New Scientist is also online, so I put a lot of articles on the portable, and enlarged the type, but he's not very interested in those either. Because he was “down” for a couple of months, he wasn't able to do his head and neck exercises, so he now doesn't have the enough endurance to move his head more than a few times. He needs to build that up before we can think about him using the switch to turn pages or select letters.

Victor, the patient in the room next to Grant, gave everybody a scare last week. Victor's the one with the hole in his head about the size of a tennis ball. I don't know the details, but I know his door was closed for a couple of days and his wife was crying. He was up yesterday, though, and everyone seemed much more chipper. The patient Chris was discharged — his insurance ran out. Chris was pretty talkative but disoriented; he said things like, “Look! There's a pizza in that tree!”

Care Meridian is in building mode again. They're finally starting the addition — two more patient rooms and another bathroom. So there are new dumpsters and equipment (Grant was particularly interested in a Bob-Cat tractor-like thing). Parking is currently a bit more challenging because you can't park in front of the garage now.

I guess the biggest change of the last couple of weeks is that I'm now allowed to push Grant's wheelchair and take him outside alone. Up until very recently, he didn't go out without a nurse or an aide to monitor his blood pressure and breathing. But those were always OK. So I've been wheeling him down the driveway to the mailbox, and around the house, for an hour at a time. Getting him out of bed still requires 4 people, so the outside walks have to be carefully planned so everyone is available at the right times. It's important that he not stay up for more than an hour; they are very careful about his butt! Grant really likes to go out. It's fun for me, too. The chair is surprisingly easy to push, but the driveway's still a bit uphill, so I've been getting some exercise, too.

Care Meridian is having a big Thanksgiving meal again this year. I remember Thanksgiving last year — Grant was very sick, and went into St. Louise Hospital the following day, then two weeks or so back in Los Gatos. Things were looking very grim.

I have been singing in a piano bar for fun. People take turns; a piano-bar lady with sequins and big hair and long fingernails plays. She seems to know every song from before about 1965, but not much after. I know a lot of old songs, so this suits me fine. I had a minor triumph with “Under the Boardwalk” Friday night.

Love, Sandy

Tuesday December 3

Dear Friends,

Grant and I continue to go outside every other day or so. Grant's been the same. The doc at Care Meridian wants to do something about his legs curling up; he has gradually settled into a position rather like a question mark; his right leg is bent up and cannot be straightened due to hyper tone. This is causing him pain. So he is being made to wear leg splints again, which he does not like. If not for the pain, I would say we should do nothing, but it looks like he has muscle pain whether his leg curls up or not, so we are going for pain relief. (There is no longer any question of recovery of function, of course.)

I have been gradually learning about the various electronic stuff Grant has around the house. Grant's friends have helped. I feel in control of the X-10 stuff (operates the lights and heat), the portable, the cell phone, the punkalunka web site, the fax machine, the TV and video, the printer, the copier, etc. I felt I was sort of catching up. I wanted to get a digital photo of us for Christmas letter, so I found a digital camera sitting around (an Epson photoPC). I got documentation from the Epson web site, and was very proud of myself for changing the batteries and successfully taking a photo and transferring it to the computer. That involved hooking and unhooking cables from the back of the computer (many scary cables live back there). On Thanksgiving our niece Jennifer visited. She is a senior at UC Santa Cruz and is from Grant's side of the family, so she has the Munsey fearlessness about technology. I figured she could take the photo. She looked at the camera and commented that it was a very early model digital camera. She told me the newer ones let you see the photo without having to download; also, she said, some of the new ones also take digital video.

We went to Care Meridian and took the photos. I was very proud of my knowledge of digital cameras, and was enthusiastically describing the new digital cameras to Grant — the ones that let you see the photo without downloading, etc. He didn't respond.

Later at home we downloaded the pictures in order to see what we had, and Jennifer noticed a camera case in Grant's office. She asked what it was. I said I thought it was a 35 mm camera. She took it out of the case and it turned out to be exactly one of those “new” digital cameras she'd been telling me about. I, of course, didn't even know we had one. Grant was always an early adopter of new technology; he must have bought that only a few weeks before he got sick! So the guy's been out of commission for 21 months and he's STILL way ahead of me!

Love, Sandy

Tuesday December 10, 2002

Dear Friends,

Grant is stable. He doesn't feel well (has been “2” most days for the past few months), and doesn't seem to have much to communicate. He is more awake some days than others. I think he's happy to see me, but I don't know how I know this.

We go outside every couple of days. He likes that — i.e., he nods or raises his eyebrows when we ask if he likes it. He has periods of a few minutes at a time when he'll “do” things, e.g., blink to say “hi” or “bye” to someone — but only if prompted. He always points to the same words with the mouthstick: “YUCKY,” “It's nice to see you,” “What's up?” and “I love you.” He has not asked to use the computer in months. He frequently has pain in his legs at level “6”.

I have been sad a lot the last week or so. I think he is not going to come back, except very briefly and very occasionally. He has not communicated anything new and unprompted of any length since “Take me to Narita” over a year ago. Most of the time he is very much like a big one-year-old, except his English comprehension is occasionally freakishly better. I set up the computer but he does not write.

This is the the best we can expect most days: I say, “I love to look at you, Grant! Seeing you makes my eyes happy! Look! My eyes are dancing!” Then I blink and raise my eyebrows, etc. Then I ask him if HIS eyes dance when they see me. He does a few blinks and eyebrow raises.

But he doesn't volunteer anything. He can do repeated blinks for “hello” and “good-bye” (this is a signal we've been using for more than a year) but he has produced this signal appropriately and without prompting only once or twice. He'll immediately give me a kiss if I kiss him or put my cheek next to his mouth; but his response is like a reflex — it has to be cued. And often, after he gives me a kiss, his mouth will stay in the kiss position for a minute or so after, as if he was there for the beginning of the kiss but his mind's drifted off in mid-kiss without informing his mouth. Many days, at his optimal attention level, he seems able to do any mental task, but only if it takes less than 5-10 seconds. Sometimes he can sustain attention for half an hour or more, but that happens maybe once every three weeks or so.

And then very rarely, he'll have a spectacular day and be able to focus longer. But even on those spectacular days, although he can respond immediately and appropriately, and follow specific directions, and answer specific questions, and make specific requests from a menu, he doesn't initiate any other communication. Very occasionally he selects “CHAT” or “WRITE”, but by the time I get out the letter board or set up the computer, he seems to have forgotten that he asked. I can leave the computer on and ready for hours on end, but he still types nothing intelligible without prompting. E.g., he'll type his name, but only if we ask him to. And that's only when he's at his very best attention level.

He still makes my eyes dance, but I fear this is as good as it's going to get.

Love, Sandy

Thursday December 19

Dear Friends,

Grant had a spectacular day last Friday, and has been pretty good this week — good enough to have communicated a message to Pas regarding some Christmas present for me! It's a secret, and Pas is being very cute about it.

Love,

Sandy

Christmas Greetings!

Dear Friends,

I want to thank you so much for all the support you've given me in the last 20 months! I feel bad that I have not returned some emails and phone calls. I hope to catch up with you all soon, probably this summer at the next reunion.

Here is the special Christmas present! Grant wrote his own name with the mouth-stick and Therese did the rest.

Best wishes to you and yours! Come visit if you're in the Bay Area; I have lots of room.

Love,

Sandy LaFave

Monday December 30

Dear Friends,

Grant has been sleepy and pretty unresponsive the last week or so. He hasn't had any more spectacular days like he did before Christmas. In fact, he has been sick. Sunday night was rough. He had a temp of 102 and was vomiting; they were using ice packs, etc. They started him on an antibiotic; they think another urinary tract infection may be causing the fever. By Monday the fever was gone, and by Monday evening he seemed more comfortable.

He has been waiting a couple of weeks now for a botox injection in his right leg. The botox is supposed to help make his leg more flexible and reduce pain. You would think that if the doctor orders a drug or a treatment, it would happen straightaway. But for chronically-ill patients it's different. And the words “botox injection” send immediate red flags (“cosmetic”, “not covered”) to both the drug supplier and the insurance company. The injections cost over $1K each for him; I gather cosmetic botox injections are much less expensive. The pharmacy wants to be sure it'll get paid, so they won't even send the drug over to Care Meridian unless insurance pre-approves. After about two weeks (having paid extra for expedited processing), the botox was delivered, and now we've been waiting since Friday for the doctor to come and give him the shot. It's (understandably) not a big priority for anyone, since Grant's mostly been asleep anyway.

This is a rough time, because when he's sick, the big questions surface. Given his general appalling condition and bleak prognosis, how much do we want to do for him if he gets a raging UTI again? I love him — what is the most loving thing to do? I can't think of any good arguments to maintain him in this indefinite, mostly zombie-like condition. I can't imagine he would want this. I feel torn apart.

Love, Sandy

January 6, 2003

Dear Friends,

Grant's urinary tract infection is still going on. He seemed much better for several days, had no fever, but then it started up again. He has a bug called proteus mirabilis — what a name! — and it's pretty common. Grant has developed allergic reactions to many antibiotics, as you know. Dr. Miner reviewed the list of antibiotics that are effective against this p. mirabilis. She sensibly prescribed the only one he hasn't been allergic to, and now it turns out he's allergic to this one too. So he's going to have to fight p. mirabilis on his own.

The most noticeable thing about him now is the allergic reaction. Some of you probably remember last June, when Grant was in Los Gatos Community Hospital and had another antibiotic reaction in which his entire body swelled up and turned plum-colored. I said at the time that I didn't know a white person could get that color! He looked like he had the worst imaginable sunburn, and eventually, just like with a sunburn, most of the skin peeled off his arms and face. Well, it looks like he's starting to go down that road again. Last night when I left, he was getting redder and redder, and his arms were starting to blister.

He was not very responsive when I was there yesterday (he had had some Benadryl), but according to the nurses, he'd said he didn't feel too sick or uncomfortable. I will not be surprised if he gets himself through this UTI; I just wonder how long he's going to be a purple bear.

Love, Sandy