Sunday, 30 November 2014

I Don't Want To Die, But...

I wouldn't mind being dead right now. I don't mean that I want to die; as far as I am concerned, nobody in their right mind actually wants to die. Nor do I mean that I am thinking about suicide in the immediate future. It's just that, on balance, being dead does not seem like such a bad thing these days.

Soon after all of this started, I talked to my counselor at the ALS clinic about death and dying. The best advice I got was to look at reasons for living and quality of life. The fact of the matter is that my quality of life has been on the decline right from the start. While it outwardly appears to have changed little, there are so many small things missing in my day to day existence that the balance has tipped well downward.

My arms hurt all the time. I can't get into bed anymore without real effort. Cooking is becoming difficult, as are almost all household activities, what they call the "activities of daily living", or ADL. Driving is becoming more difficult. I don't really make wine anymore as much as others come and make it for me. Even the simple act of holding up a coffee or a drink tires me out sometimes. I am constantly worn out, constantly feeling exhausted, even when I feel good.

Then there are the reasons for living. These are both many and few. My reasons for living these days almost completely revolve around my family and friends. I am looking forward to a wonderful Christmas, one where four generations of family will be with me; my parents, my brother Jim, my children, and their children. I look forward to an exciting few days surrounded by laughter and chatter, and the occasional meltdown of an overstimulated three or four year old, or perhaps even me.

After that, I do have a new grandchild I can wait for. If it's a boy, maybe they will name it after me. If it's a girl, well, their first was named after my ex, so it's an open field. However that day is seven months away. With ALS, that's a lifetime of waiting. I am looking forward to another road trip in the next couple of months. That count's, right?

In reality, I don't want to die. I know it will happen soon enough. I am don't wish for it to happen; I am not afraid of it happening. Dying is easy; living with ALS is hard.


  1. A man can die but once. We owe God a death. I’ll ne'er bear a base mind. An ’t be my destiny, so; an ’t be not, so. ... let it go which way it will, he that dies this year is quit for the next.
    Shakespeare -- 2 Henry IV

  2. Congrats on the news of a new family member! It is always good to have these nice goalposts in front of us, to keep us pressing forward.

    You've mentioned, in more than one post, about arm pain, which got my attention because I didn't realize that such pain was on the spectrum of ALS symptoms (I don't have ALS, but a dear friend and colleague did). How would you describe the pain? (e.g., dull and achy, or sharp? Localized to the joints such as the elbow and shoulder, or in non-joint places along your arm? Does the pain always stay in one spot, or does it move around? Does it hurt more at night than in the daytime?) I am diagnosed with possible MS, but I've been having distracting pain and weakness in my arm recently (that goes down into my leg occasionally). When I mentioned the pain to my neurologist at my last visit, she just sort of shrugged it off. Pain could be caused by lots of things, but if your description of your pain ends up sounding really familiar, then I'll be tempted to press a little harder in my neuro visit later this month for answers.

    Finally, at the risk of sounding goofy, I must tell you: you inspire me! I always look forward to reading your posts, and hope that you are having a good (such is a relative term, I know) day. All the best, and thanks for sharing your life with us through your captivating, provocative writing.

    1. The pain that I have is two kinds. The most prevalent is the low level, constant pain in my muscles from overwork. As some die, others must work harder to get the job done. The other kind of pain is nerve pain, where my nerves ache from trying so hard to connect. I get that more in the dead muscles, and especially in my lower legs. This pain is intermittent, but is there for a while when it shows up.

      In general the nerve pain moves around. The muscle pain is almost always in the same locations. It hurts more in the day, when I am using my muscles. It almost goes away completely at night when I am laying down. No work, no pain. Don't let your neuro shrug this off. It's real, very real.