Thursday, 12 December 2013

Death Doesn't Worry Me; Dying Does.

I think a lot about my death these days, about when it will happen and how, who will be with me, what my physical condition will be, how I will feel. Given the way ALS takes life and limb, I have a pretty good idea of what the process will be. Most likely I will die in my sleep, my breath slowly taken away by the ever declining strength of my diaphragm and chest wall muscles.

The problem is that it will be a lengthy process, many months filled with terrors at night as I slowly lose the ability to breath, waking in a panic as I cannot get air, struggling to clear the mucus from my throat and lungs. We know this because it is what most ALS patients go through. The "final" stages can take weeks and even months, an exhausting run to life's finish line leaving both the runner and the spectators emotionally riven, only in slow motion.

In my minds eye, I can see the wait that dying will force upon my family and friends, how they will have to see themselves through this suffering and pain. I can see it for me too. I can see them wishing it to be over for my sake, and deep inside themselves, wishing it to be over for their sake too. I can see for me too. I can see, and feel, the wish that it would just be over with, done with so the real grieving could begin and so that life could go on again. Me too.

There will be impatience, an inability to stay. My children will be far away, perhaps they will come to visit but they will not be able to stay as I go through this. Their lives, their children, their families, all will take them to places and times away from my end of days. My brothers will be far away, and even those closer will have demands that mean they cannot stay through a long and drawn out dying. My parents, Mom and Ray, may be here, but may not be. They are, as am I, facing the end of their time here. I may outlive them. I hope so.

All of this contemplation, this visioning of what will most likely be my last days, makes me want to take control, to end my own life on my own terms, to do it in a way that minimizes the stress on those around me, to quicken things, to move them along at a pace that means my death is not a troublesome time. I want to have some say in the means and manner of my death.

There are no "virtues" to suicide. It is a terrifying choice that some of us get to face head on. It is a decision some of us must make, whether we die through an active event such as "taking the pills" or whether we die through a passive event such as leaving the bi-pap unplugged one night. Either way most ALS patients will die in their sleep, slowly, voicelessly giving up their hold on life, unwillingly. The problem is that it takes so long to get there, and the road is so difficult to travel. As my brother says "It's not being dead that bothers me; it's the process of getting there".


  1. Oh my darling Richard. It is so frightening.

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