On Loss

Death,  dying and the like are the subject of much human study.  Generally what you'll talk about is the black line of no return. Dying of ALS is just like dying of anything, I imagine, except that you get to watch as the things that made you feel alive slip away one at a time in slow motion.The lesson ALS has to teach you is that you have a whole lot of dying to do before you get to the line.

At first the losses are small.. can't open a twist-off bottle cap anymore... can't wear contact lenses anymore... then they eat away at the things that make us alive.  Can't have a simple conversation... Can't eat solid food... Can't be the husband Stephanie deserves ... Can't ride a bike.  So many losses that you can't comprehend it all in real time. Only later do you discover that you can't get your bike gloves on anymore. You laugh and make the best of it, but some part of you is forever gone and you know it.It will happen a million more times.

Your personal life suffers a similar fate. Being a natural introvert, I never had very many people I was very close to.  I did have quite a few"bike friends", however.  I don't see much of them these days, appearing mostly like a ghost on a FaceBook comment.  When, however I run into someone in real life there is an understandable tension. While I have (mostly) had time to adjust to my changes, they are seeing maybe 6 months of decline all at once and you can see it in their faces.  Everyone says you look great, but you don't.  A rare few actively avoid me. Everyone deals according to the best of their ability to do so. 

As I get more and more locked in with my chair, I feel less and less part of the world. As I loose the ability to perform my own self care more and more of that duty falls on Stephanie  and the assistants we have hired. Between them  I am definitely not lacking for hands on human contact but strangely feel like I am. I think the problem is the chair and all the other equipment between me and everyone I interact with. My human contact these days no matter how kind my caregivers are is all fairly clinical. I don't really get to snuggle up to someone on the sofa or lie with my sweetie in bed. 

Really the hardest thing to deal with is what ALS has not taken from me.  I am still me. I still have a full set of human needs and desires but virtually no ability to do anything about them.  I still feel things just like I always have,  though my reactions aren't what they were.  I can see the people around me getting on with their lives, lives upon which I  can only add difficulties. I can imagine a life for Stephanie that does not involve me, and it both kills me and gives me strength.  I am almost a completely normal person, just one small problem.