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9/5/24 Pooping on schedule
One of hardest things for me to swallow in this journey has happened recently. I have lost my ability to walk. I had not realized what a privilege it is fo stand up and walk to the toilet. The real challenge is the mighty bowel movement and my husbands work schedule. Its a twenty minute process to bundle my ass into a hoyer lift, float over to the commode, land, do my business, and then rewind.
Sometimes when I get to the commode, my bowels do not cooperate.
So I want ro put it out there gratitude for about 60 years being able to take myself to the bathroom. And I want suggest that my able bodied readers have some gratitude..
The bitter pill
I have a deep relationship with the local OA community. So many people cheered when they heard that a ramp had been put in. I personally had assumed that I was going out to the public library. Oh, the places I would go1\ Reality turned out very differently.
One of the things that has happened to me in this last year is really weak neck muscles. i can't see well enough to safely "drve" my power chair. ALS turns the assumptions of PT on its head. It will get worse. That's why my husband brought me to the meeting today. That's why I will attend F2F meetings when he is available.
This is a deep shock and a bitter pill. I don't like it but I have to swallow it.
It's about love.
From my point of view pooping in my pants is not a joke. It's an act of love. I adore my husband, who right now is my sole caregiver. I believe in the work he is doing. I have sat in my office doing stomach cramps and letting the process take place. it's painful and an act of love for my husband. I want him to continue to work. It's part of the realization that he will still be ;here and need a life when I am gone, I want him to continue to engage with the world. The next big project is getting him some help.
"I want it now!"
To set this up, please understand that an occupational therapist has entered my life. Our meeting earlier this week generated a real Christmas list of durable medical equipment that would seriously change my life. Because we are somewhat frugal this list was sent to the clinic, to see if they will submit it to insurance.
I wanted to own that I am maybe 5 years old and its the night before Christmas. Are we there yet? Can I have it today?
I have a number of open tickets.Waiting is so hard'
One of the great saints of God has been welcomed home with honor. I wanted to share that article because I agree with hm. I am not afraid of death. In fact it’s become so brutally hard recently for both me and T, the final act will be welcome.
However, there are a lot of tomorrows to struggle through yet. We are not done yet.
If you are afraid of dying, pleas do some spiritual; work.
12/30/24
My grandmother was a Quaker
In pursuit of a project on the study of mysticism, I have just finished reading The Autobiography of George Fox. I get it. I have what the quakers call Leadings since I was a teenager. I think I would make a good Quaker, if there were a meeting within walking distance.
Then I am reminded of a conversation years ago. T and I both like liturgy. So that's why I am an Episcopalian.
1/28/25
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