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If I painted a bleak picture of ALS, the true picture is perhaps bleaker: Most ALS patients never need a nursing home. At first glance this statement seems hopeful and positive, until I ask you to think about its implications, knowing that ALS is a terminal illness. Yes, that's right. Most patients die before they need a nursing home. The truth is, most patients die before they need a lot of things. The brother of a friend of mine stopped being able to breathe while he could still talk, though his speech was garbled, and could still walk, though with braces. Living on a vent costs a great deal of money, it necessitates a 24 hour private duty nurse for one thing. Christopher Reeve had his millions and made it seem easy. But how many of us can afford it, let alone emotionally tolerate "being breathed" even as our bodies die slowly day by day and we are reduced to a mind and senses! In fact, most people with ALS opt to die, once their breathing is compromised. It looks like death can usually be slow and painfree, a going to sleep and dying then. I am not sure, I'll have to read more. I asked my pm visiting nurse and she thought that unless the diaphagm gave out suddenly, one would get slowly hypoxic -- suffer from a lack of oxygen -- and gradually go unconscious before dying.
I cried myself to sleep last night. I am aware that it is Joe's tongue that was the first muscle affected, the one most affected now. In the back of the throat, the tongue is huge, relatively speaking, and once it goes completely, I think he could die if it collapsed down his throat and blocked his airway. I don't know if they can prevent this -- by pinning it forward or something beforehand...How I shudder to think of him suddenly suffocating. I hope to God it can somehow be gradual and peaceful, but I am fearful that it won't, that he will die frightened for the first time in his adult life. And that I won't be there to hold his hand.
It's hard for me to write about myself right now but I realize this is a blog about schizophrenia and that that is what people come here to read about, so I will try to tell you a bit about my recent hospital stay.
I was admitted primarily for safety reasons, because I was psychotic and hearing command hallucinations telling me to set myself on fire. My father had cancer, which I, as Satan, had caused, as I had always warned everyone I would. Don't come near me, I'd said. If you do, you'll be poisoned, you'll get sick, you'll die...And now look what happened!
I was gathering the implements and materials to burn myself when I remembered what Lynnie, my psychiatrist twin, had told me: such an act would not just disfigure me, which was my aim -- since I was Satan, I had to atone, people had to be warned to stay away. No, it would kill me, which was not my aim. I knew I would have to continue if not physically prevented. I called someone, I can't remember who, and that person called Dr O. She wanted me hospitalized immediately. She arranged a bed at the hospital near Lynnie who drove 60 miles just to pick me up. Joe (this was before his diagnosis, when we still thought he would be okay) stayed with me until she arrived. He was his usual happy rational self, despite his own schizophrenia, and tried to talk me out of my beliefs about myself. I would have nothing to do with his "opinion" that I could not be Satan. He was simply wrong, and time would prove how.
By the time I was admitted at 1:00 am I was mute. I had started wearing sunglasses over my regular glasses so that no one could see my eyes and read my mind or control my thoughts and I kept them on now. I never took them off for the entire month I was there, except when writing in my notebook. The first three days, I wouldn't speak to anyone. I wrote answers to questions people asked me or when Dr O and I spoke. But I took notes on everything, trying to figure out what was "going on." Everything seemed to be a plot of some kind, a conspiracy to do something nefarious or laden with ill will toward me. In fact, from the first minute I was there I felt hated and abused, and was certain that the nursing staff was "out to get me" in a concerted way.
I wrote about "Their plotting" and "They want revenge against me" so often in my notebook it is tiresome to read, except that it gives me some insight now as to how paranoid I was at the time about everything and everyone. I was on CO -- constant observation -- most of the time I was there, up until the second to last day. During the one period Dr O felt it was safe to take me off CO, I did something terrible.
I thought I had "told" her, by means of various hints (the best I could do, since I wasn't allowed, by the Rules, to tell her openly) what I planned...if the command came. It seems I didn't tell her enough because she didn't ask the right question. She didn't figure out what was coming and I was left to wonder what that meant. The command came. Right before Goals Group.
You were supposed to tell the Goals Group and staff member the goal you wanted to accomplish that day and then at the end of the day, at Wrap Up, tell how you fared. I never sat in the circle, but outside it, at a table behind, with my notebook and a pen. I went last. My goal that day was, "Try not to commit suicide." The group leader, who had asked everyone else penetrating questions about their goals, asked me only, "Have you anything else to add?" To such an open-ended question I could only answer, "No." With that, group ended. I was first out the door.
I went immediately to the desk at the nurses station and asked for my foundation make-up, which had been taken away because it had a mirror in it. Certain "sharps" items like that could be used but had to be returned afterwards. They gave it to me without questioning. Quickly, I walked to my room, a double that had been made a single because I had been so often on CO and had had the room cleared twice, a mattress on the floor my only furniture for several days. I shut the door and went into the bathroom, knowing I had 15 minutes before a tech or nurse came by on checks. I opened the compact and managed to pry off the mirror. Using all my strength I broke it.
Yes, I did what you all know I did...
The end of the story is that there were stitches and CO again and Dr O furious at me for breaking a contract that I'd forgotten all about in the boil of the moment and never did remember. It wasn't the only time I made her furious either...Eventually, she went on vacation and a different doctor appeared in the doorway, Dr M, a tall older man I'd seen before when Dr O went away.
(To be continued)Posted by pamwagg at August 21, 2006 09:10 PM