ALS has been described as a “glass coffin” illness. It deteriorates nearly all your muscles, but leaves your eyes, sensory nerves and brain alone. You can look around and see all the things you are missing out on, feel how uncomfortable you are lying there, and think about how much it sucks. If I survive it, I intend to start an unsuccessful progressive metal band called Glass Coffin that will only play Monday night gigs at out of the way clubs. That’s highly unlikely, however, which often leaves me thinking of the inevitable, and how that may go down.
Many of my loved ones have probably wondered privately, Why doesn’t he kill himself? I sure as shit would. Believe me, when I first heard about this glass coffin business my immediate thought was, No thanks, I’ll take a regular wooden one, please. However, here are a few reasons why I am not planning to check out early.
1) Suicide is a sin and I might go to hell
2) People need me
It’s easy to forget this. I’m in a chair with equipment attached to it, which creates a physical barrier between my wife and daughter, and me. I have an IV port implanted in my chest, so they have to be careful when we do have physical contact; Nisi can’t just bound up on me for a hug like a normal five-year-old with a normal dad. Hugs of any kind are more or less impossible, in fact. This physical isolation sucks, and it’s one of my biggest sources of negativity. I often feel like an old piece of furniture – useless and in the way.
But I know they need me. I keep tabs on our finances, make sure the bills are getting paid, coordinate the many helpers in our lives – the people that come over to do the things I cannot and my wife doesn’t have time to do. I watch Nisi when Atsuko needs to go out.
Beyond these practical things, I know that I am a presence in their lives. Nisi thinks I know everything. Mama might be the go-to gal for hugs, snacks, getting art supplies down, custom scissors work, being picked up, tucked in and the like, but I’m the go-to guy for information. How do you spell “Pegasus”? What does “gutter” mean? Where does my pee go? How mad are police if you ride your bicycle on the roof? Without me, these questions would go unanswered. She also needs me for doing puzzles, drawing T-Rexes, receiving secrets and surprises, and for general horsing around.
My wife, Atsuko barely has a moment of down time. Between working 10-hour shifts and tending to the never-ending needs of her daughter and quadriplegic husband, she hardly sits down until 10 PM each night. Social life? Forget it. I would probably be doing her a big favor simply by not being here. But I know that she needs me. She needs my ears to unload the stresses of her job. She needs my dumb humor to lift her mood. She needs me because she feels my love.
The same goes for my extended family, friends, and maybe even acquaintances. I know they like having me here, and if I disappeared, that would really bum them out. Even though I know they’d understand, I just couldn’t do that to them.
At the time I was diagnosed I was blown away, severely depressed for a while, and one of my big considerations was whether or not and when to make the proactive move. However, I was also hard-core into homebrewing. That, plus number 2 above made me forget about going for the big sleep. I soon lost the strength and coordination to make beer of course, and when that happened I was suddenly interested again in electronic music production, which I had been doing before I got into brewing.
I worked feverishly producing tracks using computer software for about two years, until my fingers lost the fine motor control necessary for virtual knob twiddling via the keyboard and mouse. When that happened I renewed my passion for brewing, this time with the help of friends and family. At the same time I began writing this memoir. Both of these things keep my mind busy, and give me outcomes to look forward to. I am only able to do these things, however, because I can still speak. I order my friends around with the grain mill and the mash tun, and I use a microphone and dictation software to write these words. My neck muscles, my tongue and the muscles around my mouth are considerably weaker than they were a year ago, though. What will keep me going when I can’t speak and have no projects to work on?
What’s going to happen next? I have to know. No matter how terrible the movie is, I don’t turn it off. No matter how bad the book is, I don’t put it down. No matter how shitty the situation is, there is this annoyingly optimistic small voice that says, Let’s just see how things go from here. It’s so stupid it defies reason, and I don’t pretend to know where it comes from, but it keeps me from throwing in the towel.
A good friend of mine is a terrific painter. Early on I asked her for four paintings, one for each wall of the room that I imagined I would eventually be confined to. As long as I have interesting things to look at, I reasoned, I can maintain my interest in living. At times I will be left on my own for a couple of hours. I can use my computer, but I can’t do anything else. Once or twice I’ve had the computer crash, so all I can do is look around, listen to sounds, and talk to myself. Surprisingly, this wasn’t too bad once I got past the annoyance of it. I am a pretty good conversationalist, after all. In the future I won’t be able to talk to myself, but I can see how I could get used to just looking around and listening. Plus, not being able to do anything also means not having to do anything, right? No tasks, no responsibilities. You gotta like that. But can I handle forced relaxation 24/7? Will it be Club Med, or are we back to that glass coffin bullshit? In that case, what’s gonna stop me?
5) Bug brain
Life just wants to live. It’s its own meaning. Look at how a half-squashed bug will cling to life, using its unsquashed half to kick and squirm and try to get away from the inevitable. Beyond me being too incapacitated to pull the trigger or swallow the pill, if it comes right down to it, I just don’t think I will do it. It would take a supreme amount of intellectual energy, willpower, for me to end my own life. It’s a front brain/back brain battle, and I think the back brain is stronger. The bug only has the back brain – pure will to live – and I am more like the bug.
A couple of years into this, when I was still fairly functional, I made the mistake of asking a social worker, So how do people in the later stages of ALS spend their time? She replied, They watch a lot of TV. I immediately began shopping for a gun. More recently I asked my specialist to give me the full skinny on my prognosis. How long do I really have? She told me, Basically as long as you want. Modern technology means the days of being confined to bed are history. That sounded great, but it brought up the question, How long do I want (given everything that ALS is putting me and my family through), and how will I know when it’s time to pull the plug? Now I think, even if I know the answers to those questions, and the answer is, Enough, it’s time, I don’t think I will be able to give the signal. My bug brain will keep me alive.
So I’m not going to commit suicide, and ALS won’t kill me, per se. That’s the good news – I guess. Technology will keep me alive long after quality of life has drained away. It’s going to be an enormous burden, though. Someone will have to make the call to end my life. If I wait too long I won’t be able to do it. The burden will be on my wife. And when it happens, I’ll be awake for it. It’s a very unique situation.