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Chapter 45

Days of Infirmary

April 16, 2001

In the last chapter, I said I was going to try to get through the grieving process as quickly and efficiently as possible. However, I've found the process itself is not amenable to that approach. It's something that needs to be worked on in small portions every day.

I learned this through reading "Morrie in his Own Words". Morrie said that he did a little grieving in the morning each day, in order to get it over with. I'm just dealing with it whenever it arises. So far, it hasn't been too overpowering a process. Just something you do, and then move on. There's been so much to mourn, lately. Which leads, I guess, to a description of where things stand right now.

I've lost control of both hands. Now, my voice is giving out on me. My loudest voice is what I used to call a "stage whisper". This makes even talking on the telephone difficult. In addition, I've been bedeviled by a number of flu-like physical ailments. I've spent a couple of days vomiting, which, when you can't lift your head, is a particularly unappealing process. It's also hard on my poor wife, who can deal with anything except puke. Luckily, during both attacks, my brother was visiting from Massachusetts and was able to take over some of the basin-holding duties. Chills and hot flashes accompany the vomiting, as well as a strange sensation I find easier to describe than to categorize. It feels as though a pressure wave pushes up my body from my legs through my head, making each area feel as swollen as my hands, almost to the bursting point.

This pressureWave is usually accompanied by chills and is particularly nasty. It started off visiting once every few days, but has lately been stopping in every day and on a few days, twice. My hope is that all of these - pressureWave, nausea, chills and hot flashes - are symptoms of some secondary infection, and that, if we can ever find it, the doctors can cure the infection and they will go away. They just don't feel like part of ALS, somehow. The doctors have agreed to have a look

So last Friday, I went into the hospital for various tests, including x-rays of my lungs, a CAT scan of my sinuses, and an array of blood and urine tests, of which the last-named proved the most difficult. The hospital was packed to the walls. Not a bed to be had. Accident victims and cardiacs were stacked against the walls - carefully, mind you. They pushed my gurney into an office full of busy schedulers, slipped a urinal beneath my schwanz-Stuker and told me, "You go right ahead. No one will notice." Needless to say, I found this impossible. So they pushed me into a quiet hallway. The moment I was alone, however, huge automatic doors whooshed open behind me. I discovered I was in an entrance to the ER, surrounded by people walking in and out, pushing emergency patients. I never did succeed in filling the cup. Of course, the ambulance ride home instead of struggling to get it out saw me struggling to keep it in. It's a world of contrasts, what can I tell ya.

I eventually sent them some urine via carrier pigeon.

So far, I've heard nothing about any results. And so, I remain hopeful.

Everything had actually come to a head the Wednesday before. My memories of that day are very fragmented, and I've had to rely on what a lot of people have told me to put it together. I remember that I woke up choking on a huge mouthful of phlegm. Once that had cleared, things got very strange. Lynne tells me that I wasn't very coherent. At some point, I asked to have a table removed from my chest. I am aware of the fact that I seemed to be in the very first apartment she and I had rented together 25 years before. Sometimes, I could even open my eyes and see it. But on reflection I would realize I couldn't possibly be there.

It was all very confusing. I would keep orienting myself as to where I was, only to find that I had slid back to that earlier apartment, later. At the same time, I had the distinct impression of being able to see the life force within my body. It was like a glowing blue gas, and my body seemed to be made of a thin crystalline structure containing it. The gas seemed to be escaping somewhere, growing thinner as I watched, and I could feel my hold on this reality slipping away. I was convinced that I was dying, and announced this to everyone in the room.

It felt like something I had no control over, and that at any moment I would just drift away. My brother wanted to know if I wanted them to call 911. I refused, wanting to die in my own bed. I also refused any pain medication. I wanted to keep my thinking as clear as possible, you see. Naturally, I was scaring the piss out of everyone in the house, and even some people who called in the middle, whom I blithely told, "I'm dying. Goodbye."

When I told my daughter, she just said, "NO!" and left the room. I hadn't expected that. When I told my son, he explained in an adamant voice, that talking about dying was pure bullshit and that I could stay or go but it was my choice even if I didn't understand how to work it right then. I remember laughing with Lynne after they had left the room, saying that of all the reactions I had expected, not even being believed was one I had never considered. The fact that I could laugh even when I believed I was dying gave me great pleasure at the time, and even more now, thinking back on it.

Another thing, which was very disconcerting, was that I kept hearing voices and sounds that were inaudible to everyone else in the room. I wish I could remember more about these voices now, but I can't. When I was talking to Brian, I had the distinct impression that he was holding my hand. I thanked him for it. He told me that no one was holding my hand, but I continued to feel the gentle soothing pressure for at least another hour. Whether this was contact with spirit guides or someone departed or just imagination, I have no idea.

It took until late afternoon for me to realize that I was over some hump, and wouldn't be dying that day. I'm still convinced that I could indeed have let go and slipped away, except for my childrens' insistence that I not. Anyway, I'm glad it didn't happen. But I feel tremendously sorry for the hell I put my family and friends through. It was a very odd day. Trying to remember it is like trying to grab smoke with my fingertips. The scariest part is, I have no idea what precipitated this event or how to deal with it if it should come again.

Since that day, I've felt more disconnected from my life than ever before. I find it hard to indulge in trivial chitchat anymore. During particularly painful days I've taken to disconnecting from my body and floating in some soft dark fantasy world, the details of which elude me when I'm not there.

All in all, I guess it was good to have a dry run for the day when death really arrives. We found several holes in our support system, including the fact that no nurse of doctor would come to the house to check on me. Thanks again to those wonderful folks who create insurance regulations. I also discovered that I have a lot more to talk with my son and daughter about, to get them ready, or as ready as they can ever be, for the ultimate ending.

Quite frankly, I never thought death gave you a dry run. But as in everything that has happened to me lately, I stand back in awe, amazement and appreciation

I'm wondering if the feelings of disconnection that I'm currently experiencing are really a holdover from that day, or are symptoms of whatever infection feels like it's raging through my body. It's hard to be present when every muscle is screaming for your attention.

The other day I was struck by a hurt dating from around 7th grade. And I didn't want to let it go. Still. But eventually I talked myself into letting it go, and I did, and it really felt better. I was struck with how much energy I'd spent over the years holding on to this trivial piece of shit. If nothing else, I will continue going over my past and discovering more old hurts I can discharge through forgiveness. I don't know that that will keep me around any longer, but it'll certainly take what time I have left and make it a lot more pleasant.


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