Embedded Files
Don't Look Down
I had been seeing all these flyers and ads around for a hypnosis stop smoking session and since I’m allergic to the patch and accidentally overdosed on Welbutrin I figured, what the hell, I’d give it a try. So I pulled into the parking lot of the Holiday Inn at the West Gate Mall in Brockton and the lot was full of cars which were full of people clutching Styrofoam Dunkin Donut cups and desperately sucking down one or two last cigarettes before going in for the cure.
After my own last smoke I headed into a familiar set up. A low rent hotel banquet room with a registration table in front manned by a clean cut but slightly hip because of the spiky haircut young man and his wife. The set up was familiar to me because it was identical to what it was like when I worked for a fly by night “estate” Auction Company that used to scamper up and down the east coast plying bogus antiques.
I filled out the registration form and in my boundless enthusiasm declared in writing that I wanted to quit smoking, and since they were kind enough to enquire, lose about 50 pounds in the process. I handed over my credit card for the fifty-dollar hit, collected my workbook and cassette tape for home reinforcement and took my seat.
I cracked open the workbook and set about calculating how much I’d spent on cigarettes since I started smoking and came up with $25,000, which was of course inaccurate because cigarettes were less than a dollar a pack when I started and the workbook was instructing me to calculate by current prices. It then had me calculate the savings of quitting smoking 30 years into the future and it was a satisfying 45 grand. Then the clean cut man took the stage and began explaining about neurotransmitters and nicotine, and insulin levels and nicotine and weight gain associated with quitting smoking and began to weave in a pitch for his special herbal formulas that can counteract all this. Then the bastard invoked the fall of the twin towers just five days earlier by solemnly telling us that “due to this week’s catastrophe” he hadn’t been able to restock his supply, but folks, he would try his hardest to accommodate everyone wishing to buy some. Then he called for a last break before starting the hypnosis.
So I rushed up to the table wildly waving my Discover card, practically screaming “Me first! Take me first!” I’ve never admitted to anyone how much I spent on the “Ciga-sation Complex” or the “Trim Tabs” for the recommended 100 day supply, but if my husband, Mike, ever learns the exact figure he would never let me leave the house with a credit card unescorted.
I headed back outside for another last smoke and started chatting with a guy who it turns out was attending for his sixth time, but he was sure it was really going to take that time and he assured me that all the snake oil I just bought really was helpful. With decidedly less optimism I returned to my seat with my little plastic shopping bag. We went through some rah rah rah and then crushed our cigarettes and threw them in the trash and he did a decent job of hypnotizing us except for that poor lady behind me who had a panic attack.
So I left the hotel and drove back home in the same sort of daze I’d been in all week trying not to think about how quiet the skies were with no planes, and how I was also feeling weird and displaced because there was no Marlboro balanced between my index and middle finger.
I emailed my friend, Rob, in NYC, that I had quit smoking and said “I’ve decided the only way to pull this off is to pretend that I am the girl in the bubble and whenever anyone says anything that might irritate me I’ll just say ‘la, la, la I can’t hear you because I’m in my bubble right now.’”
He emailed back that the steroids he was taking for his brain cancer made him so hungry that he wanted to eat the furniture and he had gained so much weight that he was bursting out of the triple extra large boxers his parents bought him at Sears, and that when the wind shifted he could smell the fire from the towers and it smelled like burning Band-Aids.
I emailed him back that for the first time ever the Wall Street Journal made me cry, the story on all the missing temps.
He replied that the smoke in Queens was aggravating his bronchitis so he was staying with his parents in Palisades and they had no cable and since all the transmission towers had been on top of the World Trade Center that meant they only had 2 TV stations and it was pretty grim because he desperately needed distraction while waiting for the results of his latest MRI to tell him if the tumor that had already been operated on three times was making yet another reappearance. Since both TV and his Queens based lover were unavailable he was drowning himself in the arms of Sara Lee and his most pressing question was how they get the marbling in a marble cake.
I replied that they poured the vanilla first then swirled the chocolate in with a knife.
He replied that it was official, the tumor was back and his fourth brain surgery was scheduled for the end of the month in Philadelphia because that was where his surgeon had moved.
I replied that if he sent me the dates I’d hop on a train and meet him down there.
About three weeks after quitting smoking I was sitting at my desk in the Information Technology Department of a publishing house, drinking water per the post hypnotic suggestion, and hating my boss and posting on the internet about my headache. I had never had such an intense headache before. I discovered that if I moved my eyes to the right or the left it hurt more, which I found simply astonishing. The headache had started three days earlier. I barely noticed it at first, just brilliant flashes of pain, like being poked with something sharp, and then it would vanish almost before I was aware that it had happened. But that day the flashes of pain were getting much stronger and lasting longer and I was starting to worry a bit.
While clutching my forehead in response to the blinding pain I was treated to a one on one with the new guy, who in yet another reorganization, had been brought in as a boss to my much-despised boss. Despite the sudden and unpredictable explosions of pain directly between my eyes, I was holding it together and looking all professional and ambitious and proposing projects and so on when he asked me point blank what I thought about my boss. I didn’t rip him to pieces, I wasn’t in the mood for that kind of karma, but I did mention that I wasn’t crazy about his interpretation of personal days and that there were a few things he could be doing differently.
I escaped from the meeting and fled downstairs through the marble lobby and out the revolving door to huddle in the shadow of the building and suck down a cigarette. The hypnosis had been so effective that instead of counting each agonizing second, minute, hour, and day that I was smoke free, I often completely forgot that I had quit smoking. Finding myself on the sidewalk with nothing to smoke I huddled near my coworker, Tara, and gulped in her second hand smoke. Her one on one had been right before mine, and she was working on her third or fourth Marlboro Menthol to recover from it.
As we talked the headache progressed like labor until there was no longer any respite between the flashes of pain and I left work and staggered two blocks to the train station. In the station I leaned against a post and clutched my forehead while glaring at the people who had had the good fortune to snag one of the pitifully inadequate seats on a bench and didn’t even have the manners to offer it to someone in obvious agony.
By the time I made it home I was crying. Mike bundled me into the car and drove me straight to the Braintree Harvard Vanguard Medical Clinic, my doctor’s practice, which I thought fondly of as the Store 24 of medicine, maybe not top shelf, but convenient and usually open. The doctor on call diagnosed a sinus infection and demonstrated by jabbing the most painful spot with his index finger. My instinct was to kick him hard but the electric hued stars I was suddenly seeing, just like in a cartoon, shot my reflexes.
Armed with a handful of prescriptions for antibiotics, decongestants and expectorants I climbed back into the car and huddled in ball of misery for the ride home. Mike tucked me into bed, went to the drug store, and came back with medicine, magazines, ginger ale, and Season One of Sex In The City. He set the TV and VCR up in the bedroom where I could reach them and assured me he was at my beck and call for the duration. Our dimwitted, chubby little Brittany stationed himself between the bed and TV, convenient for petting, and left only for comfort breaks and feedings. Our twelve-year-old son, Anton, popped in periodically to watch TV with me and explain the finer points of Samurai Jack.
We all expected a day or two of antibiotics to cure me, but they didn’t. Days began to blur together. The headaches developed a rhythm, horrific and crippling in the morning, gradually receding until by evening I could usually sit up and watch a little TV and surf the internet and maybe eat something. Every day or so Mike would call the doctor’s office again, getting a different nurse or doctor each time and new prescriptions were issued and new co-pays charged.
One night when I seemed better he ventured out to use concert tickets we had bought weeks earlier, leaving me watching TV with Anton to bring me tonic and food as needed. Soon after he left I was suddenly over taken by a violent nausea. Anton was terrified to be solely in charge of a vomiting delirious mother. Fortunately a friend and neighbor, who also happened to be an ER nurse, Sarah, stopped in to see how I was doing. Finding me dry heaving into a wastebasket she scooped up the bottles of medicine on the bedside table, called Harvard Vanguard for the overnight doctor on call, described my symptoms and got a prescription for compazine called into the 24 hour drug store the next town over and took Anton on the ride with her to pick it up. The compazine didn’t actually work and I spent another ten hours or so dry heaving into a bucket. Mike and Sarah sat up with me talking quietly. At one point when they thought I was asleep I heard her say, “But doctors can be wrong and people can die that way.” I was too nauseated and addled by the headache to realize that she meant me.
The next morning Mike dragged me out to the car and took me back to the clinic. It was a weekend skeleton crew. They stuck me an exam room with the lights off and an icepack on my forehead and tried without success to start an IV to re-hydrate me. My veins seemed to simply collapse at the sight of the needle. After repeated failed sticks I groggily suggested they just bring me a gallon of ginger ale. They gave me another shot of antinausea medicine and sent me home with another fistful of prescriptions, this time including a healthy dose of codeine for the pain.
The codeine worked miracles and by evening I was sure I was sprinting towards recovery. I felt so good I even got dressed and took the dog for a walk around the block. The next morning, when I woke up, all the drugs had worn off and I realized that I was still just as sick as I had been all along. I was now on day nine of the blinding headaches, and I had a very squicky stomach. Since my current one and only goal in life, to the exclusion of all others, was to never, ever, throw up again, ever, I took another dose of compazine, draped a heating pad over my face and dreamt of car accidents and head injuries while CNN droned in the background..
I spent a couple of more days alternating between feeling even worse than the day before and being so high on codeine I felt like I should go to a rave or something. Sex and City began to lose its charm, the main character smoked nonstop, except when she or someone else was having sex, which in my delicate condition was not the least bit appealing. It did make me want to smoke though.
I left a pathetic message about my condition for Rob, who may or may not have been having his brain surgery that week. I apologized for losing touch with him. He left a message for me the next day explaining he hadn’t had the surgery yet because he had pneumonia. But he did think it was swell that we were both so sick and suggested that once both of us were conscious and breathing unassisted at the same time we should have a good long chat comparing emergency room visits.
It took me a day or so to notice when my vision started to go, like when you walk into a dark building on a bright sunny day and your eyes to take a few minutes to adjust. At first I thought maybe it was all the prescriptions I was taking. I called Sarah and she told me I needed to see an ophthalmologist. I called Harvard Vanguard and reported that my vision was blurry and cloudy and colors were hard to distinguish. They told me they were all booked and I should come in after seven pm to their urgent care clinic.
I went in at seven and was seen by the same doctor who had originally diagnosed the alleged sinus infection two weeks earlier. I was a bit testy and still smarting from paying what had to be the eighth $10 co-pay of the ordeal just to get in the door of the clinic.
“What seems to be the problem?” he asked.
“What do you mean what’s the problem!” I said, “This is the eighth time I’ve been in here in two weeks.”
“Well if you want to go to a practice where everyone knows your name…” he started to say.
“I’d settle for a practice where the doctors read my chart,” I interrupted him, and then gave a brief recap.
He took out an eye chart.
I said, “Are you an ophthalmologist?”
“Of course not,” he replied.
“So you are going to give me a back of the door eye test and confirm what I just told you, that I can’t see very well.” I snapped. “After two weeks of brain bending headaches and now a significant loss of vision don’t you think it just might be possible that this isn’t a fucking sinus infection and that maybe something is seriously wrong with me that you are not qualified to treat?”
“What do you want me to do?” he asked, stunned, and obviously uneasy at how accurately the problem was now laid out.
“First I want you to refund my ten freaking dollar co-pay, and then I want a referral to an ophthalmologist.”
He scribbled a referral to Massachusetts Eye and Ear Infirmary on a scrap of paper. The front desk ladies were shocked when he walked out to the waiting room with me an instructed them to give me my co-pay back. One of them whispered “Good for you!” as she handed me the ten dollar bill.
It’s best that I couldn’t see what brought all the other patients to Mass Eye and Ear’s emergency room on a weekday night. I’m too squeamish for that sort of thing. A triage nurse interviewed me, dilated me eyes and then Mike and Anton and I sat in the waiting room keeping our eyes studiously to ourselves for a few hours until I was called. I was brought into a small examining room with a curtain for a door and sat in dentist like chair while a young resident took out her light and peered into my eyes. When she abruptly dropped her light in my lap and ran to the door and then got tangled in the curtain and had to fight her way through I thought, “This can’t be good.”
She returned with the senior doctor on call who plucked the light from my lap and looked for herself. Then without a word to me she picked up the phone and began speaking rapidly in huge Greek and Latin words. Within seconds another doctor was in the room, a neuro-ophthalmologist, I was told, and he looked into my eyes too and the excited conversation continued above my head.
“Hey guys,” I said. “I’m still in the room.”
The ER doctor interrupted her conversation with the neuro-ophthalmologist and said, “Your optic nerves are badly disfigured which is why you are having trouble seeing. There are two possible reasons. One is that you have a brain tumor.” I thought of Rob and his Stage Four Multiforma Glioblastomas and everything I had learned about brain cancer over the past two years, none of it cheery or reassuring.
The doctor tapped my shoulder. “Did you hear me?” she asked.
“Huh?” I said.
“You probably don’t have a brain tumor,” she said. “Its much more likely that you have something called Psuedotumor Cerebri, a false brain tumor.”
I was confused. Your brain and spine are a closed system, she explained, with fluid that bathes your brain and spine. Sometimes people accumulate too much fluid in the system, no one knows how or why, and the pressure builds up and gives you headaches, and crushes your brain, and crushes your optic nerves. Of course, brain tumors also give you headaches and can crush your brain and optic nerves. The only way to tell whether it’s a real or pseudo tumor is to do an MRI. She was on the phone scheduling one next door at Massachusetts General Hospital as we spoke.
Though I had never had one, MRI’s terrified me. First, they were what people with BRAIN CANCER had, and second I had an overactive imagination and had read a horrifying news item on the internet some months before about the tragic death of a four year old boy during an MRI, something about a metal oxygen tank being inadvertently left in the MRI room and embedding itself in the poor little tyke’s head when the super powerful magnet was turned on. The same article had helpfully listed other MRI catastrophes, including one especially grisly one featuring an overlooked bobby pin and the patient’s sinus cavity.
I had an idea, couldn’t they just treat me for psuedotumor and if that didn’t help then we could discuss MRIs? The doctor actually laughed and explained that would be malpractice and she would lose her license.
The hospital was surprisingly efficient in the wee hours of the morning. A nurse gave me a strong sedative to calm me down enough for them to wedge me into the magnetic tube. A sympathetic tech who had heard all the same horror stories as me and was able to reassure me that no oxygen tanks or bobby pins lurked in the MRI suite did a series of scans which were read immediately by the neurologists. Anton curled up in a waiting room chair and fell asleep. The sedative knocked me out too, so I slept through the hours Mike spent pacing the halls waiting for them to read the scans and tell him if his wife had a brain tumor. It was dawn when the neuro-ophthalmologist gave us the good news. There was no tumor. The next step of treatment would be a lumbar puncture to relieve the pressure on my brain and some vague series of treatment that I wasn’t able to remember or process. He sent us home with instructions to call and schedule something in a week or so, no hurry.
Mike drove the three of us back home and I slept until noon. When I woke up Mike and Anton were still asleep and the headache had miraculously vanished. I got dressed and rifled through Mike’s pockets for cash since it had been weeks since I had been able to do anything as mundane as hit a cash machine. I slipped out the kitchen door and walked down the street. When Mike woke up he found me sitting on our front steps in the unseasonably warm fall sunshine smoking a cigarette.
“I thought you quit smoking,” he said, a tad accusingly.
I took a long drag, reveling in the taste, ecstatic to finally be doing one of my favorite things again, and said, “I did. And then I went BLIND. If ever God was telling me to go over to the gas station and buy a pack of Marlboros, I think that was it.”
Mike couldn’t think of an answer, so he went back inside and sent an email to his boss. It said: A family emergency has come up which will make me unavailable today. My wife lost a good part of her vision last night after a long bout of headaches.
I spent the next two days on the phone. I described the notes I had read on my chart to my sister “Obese, young white female.” Apparently pseudotumor preyed on the chubby, and recent weight gain, from say, quitting smoking, was implicated as a trigger.
“At least they gave you ‘young.’” She said.
Sarah pointed out that the 15 hour vomit-athon was obviously caused by pressure on the nausea center of my brain. I hadn’t known my brain had a nausea center.
Sunday morning I woke up with sharp pain behind my eyes. And I wasn’t sure, but it seemed my eyesight was even worse. In a panic I called the hospital and had them page the neuro-ophthalmologist. Instead of assuring me that this was a harmless development, and maybe calling in a prescription, he told me he’d meet me at the ER.
At the ER he was skeptical; the resentment over being called in on his day off was palpable. He gave me a vision test and immediately all hell broke loose. Other neurologists were paged, one came rushing in jangling his car keys and with his coat still on for a consultation that took on a hysterical tone. A neurosurgeon was paged to do an immediate lumbar puncture. Between Wednesday and Sunday the vision in my right eye had decreased from 20/60 to 20/120. They had never seen such a rapid and dramatic vision decline, usually it would take months or years to lose that much vision and even that was exceedingly rare in an already very rare condition.
We were rushed over to the Emergency Room and after a few minutes wait a very dishy young neurologist led me away from the screaming chaos of the ER into the only private place available, a broom closet, for a consult. He took one look at me slumped in the chair wedged up next to the utility sink and assured me, “Don’t worry, we have drugs for that.” Prince Charming the Neuro Guy asked me if I had any preferences for a sedative. I didn’t. He said, “Oh good, I’ll choose.” He returned with a vial of Ativan and while keeping up a friendly, distracting banter, set to work with me curled up on my side and the waves of Ativan soothing over me leaving me trying not to giggle at the funny doctor’s jokes and ruing the fact that the current laundry crisis had left me wearing the hideous tie dyed orange underpants.
Finally, we were done and I promptly passed out and slept a deep dreamless sleep for the first time in days. After a 4 or 5 hour nap they shooed us out and I went straight from the car to my bed and passed back out. At eight am the next morning Dr. Lee, the neuro-Ophthalmologist, called and said he had talked to “Ocular Plastics” and they wanted to see me that day. I fell back into the dreamless sleep and Mike spent the day fielding calls of well wishes and offers of help and my sisters made arrangements for taking care of Anton.
At around three I got back up. I pulled a shirt out of the closet and asked Mike if it was my green shirt, he said, no, it was his gray shirt. I had gone color blind over night. We went out to the car and everything was very dim and dark, I was having trouble seeing anything other than shadow and light. I asked him if it was cloudy out. He said, no, it was blazing sunny. We drove back to Mass Eye and Ear and waited for a couple of hours in another waiting room. A whole new set of doctors, surgeons this time, dilated my eyes. They gave me a quick vision test and told me I had lost even more since the lumbar puncture, which was unheard of. I couldn’t even see an eye chart anymore and was down to counting fingers, not very accurately.
They explained my options. Do nothing and go completely blind very quickly. Put a shunt in my spine to continue draining the excess spinal fluid (I blacked out a little at that suggestion and fortunately, no one else seemed in favor of it either). Do eye surgery to prevent further vision loss with the outside chance that it would also restore some of the already lost vision. The surgeon did actually use the words “You have nothing left to lose.”
I opted for the surgery. They tried to explain the procedure for the informed consent. I told them I was extremely squeamish and didn’t want to know. They kept talking anyway. I stuck my fingers in my ears and said “La, la, la I can’t hear you.” They explained the risks of blindness and eyelid disfigurement to Mike instead, then stuck a pen in my hand, guided my hand to the paper and had me sign an informed consent form that I couldn’t even see.
Then the nice young Dr. Lee, reappeared and announced they were admitting me over night in preparation for the surgery the next day. I fought it half-heartedly but the whole going blind thing trumped all of my objections regarding clean linens and not having a tooth brush with me.
It was that afternoon that I noticed a funny little trick your mind and eyes play on you. Whenever I looked at Mike I saw every detail of his face. When I looked at all the doctors I barely knew or had just met I saw vaguely human shaped blobs. I was seeing Mike from my memory of his face. The morning before surgery I was introduced to the Head of Neuro-Ophthalmology. He picked up the bottle of eye drops and advanced on me. “I thought the surgeon said my eyes shouldn’t be dilated,” I said, ducking out of reach.
“Surgery shouldn’t be until this afternoon, they’ll be back to normal by then,” he said grabbing my chin, tilting my head back and releasing the drops into my eyes.
“Since we’re bending the rules does that mean I can have a cup of coffee too?” I asked.
“Absolutely not.”
When they called me for surgery, earlier than expected because an operating room had opened up, I was out on the sidewalk smoking a cigarette. When we reentered the building we heard the page, “Deborah Chaisson please report to the 11th floor surgical ward immediately.”
We took the elevator up. A soothing recorded voice announced each floor all the way up. When I got to the ward the nurse assigned to me was frantic, “You were out smoking right before surgery?! Do you know how dangerous that is? Do you want to have a stroke! What if you don’t wake up from the anesthesia?”
She put a blood pressure cuff on my arm and had a whole new fit when the reading was impossibly high. “The pressure’s too high! They’re going to cancel the surgery!” she said to the aide standing next to her. Then she ordered me to lie down and “relax.”
“Maybe it would be more relaxing if you stopped shrieking that I’m going to die on the operating table,” I thought to myself but didn’t say out loud.
Surgery was a blur of being wheeled down corridors on a gurney and the blessed anesthetic knocking me out just as the terror peaked. Mike whiled away the time ordering my favorite foods from the dinner menu and walking over to the corner store, so chocolate cake and a fresh pack of Marlboros were waiting for me when I finally returned to my room.
The next morning I sat in my bed just looking around me, inventorying all the things I could see clearly again. A parade of doctors wandered through the room, all saying the same thing, they had observed my surgery the day before and just wanted to do a quick check on my eyes. I felt like the medical equivalent of a movie star.
During the day and a half I was in the hospital waves of love and concern rained in from our family and friends. My sisters set up an elaborate chain of command for taking care of Anton. So many people were determined to help that a basket full of fabric scraps was accidentally dropped off at the wash and fold place and the poor dog was exhausted from all the walks he was dragged on.
When I returned home with my modestly increased vision I found that just like I could see Mike’s features from memory, I could see everything in the apartment we had lived in for ten years too. When I ventured out, however, I was always startled, and terrified, at the great big gray swaths of what I could not see anymore. I didn’t trust myself to cross a street without getting hit by an invisible car. I took to staying up until about four am when HGTV switched from its regular programming to the Juiceman Infomercial when I would totter off to bed and sleep as late as possible to avoid having to think about what life without being able to drive a car, or see my son from a distance, would be like.
For weeks I went into Mass Eye and Ear for vision tests almost daily and they all were simply thrilled with my progress but I was like, “I don’t know boys, I’m just not feeling the joy.” Yes, it could have been much worse, I could see. I could read. At that moment I was looking at the world through two constricted pinholes that used to be full service eyes but they assured me that I would just keep getting better every day.
The nice young Dr. Lee asked me if I was feeling better and I lied and said “Yes” because I had just embarked on hardcore Princess Therapy with a manicure and a ridiculously expensive hair cut and writing thank you notes and I was trying to practice being optimistic and polite. “Good,” he said, “Because you were a mean son of a gun.” I assumed he was referring to that morning of surgery after a terror inducing, prednizone enhanced sleepless night in the hospital when I greeted him by saying, “Fuck you, haven’t they given you a prescription pad yet?”
But the doctors were right. Everyday my circle of vision expanded a little more, until the day Dr. Lee told me he was informing my insurance company that I was fit to return to work.
I protested that I wasn’t ready.
He pointed out that I basically talked on the phone for a living and there was no reason I couldn’t do it. He even demonstrated by shutting his eyes and feeling around on his desk for the phone, picking up the receiver and saying “Hello?”
Of course he was right, and hating your boss is not a medical condition, unfortunately. So I did return to work. And my circle of vision continued to increase until I felt confident enough to take the Acela from Back Bay to Penn station and hail a cab to Rob’s apartment in Queens all by myself and experience the bittersweet joy of continuing to get better while he got worse.
Cover Illustration – Tim Burton
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