In our part of the country if someone says "Do you want to go quading? It means a couple of fun filled hours ripping up and down woodland trails, splashing through swamps on an all terrain vehicle. It hit me the other day, that when I ask Joan to go quading it means "taking her quadriplegic husband out for a walk in the power chair with her steering the chair". lol This pic was taken at one of my favorite spots in Whitemouth on the old town bridge. It is a very pretty spot.
I have been trying to come to terms with the reality that I am essentially now a quadriplegic. My mind has still not got wrapped around the reality of my physical condition. I am still the same person inside even though I can no longer, walk, eat, go to the bathroom myself, lift a hand, and scratch an itch, never mind scratch anything else. I can feel everything even down to the mosquito that would land on my foot. I look at my legs and arms and try to move them with the same success you would look at a chair and try to mentally pull it out from a table. It just doesn't work!
One of the hardest things has been developing the mental toughness to deal with the constant itches, cramps and discomfort and pain that being immobile brings. Joan has been fantastic in trying to keep me comfortable. But there is only so much any one person can do. With ALS you just have to draw on your reserves to get through it.
When I was healthy and I thought about "me" it was all inclusive. My legs, my arms, my mind. Everything was just one big entity. As my body continues to give out I have found that "me" has nothing to do with my body. But instead, is a spiritual being who simply uses this body to get around on earth. I knew all of this as I am sure you do theoretically but I know it now as a truth not a theory. A good analogy would be a driver in a car. The car lets you get around but it is not the driver! Same goes with us in our bodies. At some point or other the car gives out and the driver steps out of it and walks away. Again these are concepts I have always acknowledged but now am learning about at a whole different level.
This last number of months as my chest muscles have continued to weaken and breathing has become so very hard even with my meds and bipap. It forces me to confront my own longevity in a much more direct way. When your legs and arms weaken and give out it is very hard but you can compensate by adapting how you do things by using things like the power chair or simply by not doing somethings at all. Breathing is not like that. As your breathing gets tougher and tougher you have to face your mortality in a whole different way. It is no longer theoretical. The bipap machine has been a God send and has actually extended my life by months. I know that without it I would have been gone already.
We are now using meds 24/7 to help trick my brain into thinking I am getting enough oxygen. We will continue to increase the dosages as needed to provide me some degree of comfort but you can only go so far with that as well. This brings a relief from the struggling and anxiety of trying to breath. But I must confront and deal with the fact that we can only go so long like this before even that won't work any longer. I have personally chosen not to go with a tracheotomy at the time that my lung muscles completely give out. This is a very personal decision and everyone is different. In my case, I feel that it would extent the pain and suffering past the point that I would be able to deal with. It would also put an unimaginable burden on my loved ones. I might have a different perspective on this procedure if there were any hope of a recovery but at this point with ALS there just is none. I made this decision very early on after diagnosis and much study and practical experience have only reinforced it my mind that for me this is the right choice.
As you know, I am an incredible optimist but also a realist. I guess growing up on the farm at Sperling built that into me. My reality is that if everything goes right I will be lucky to have a very few months left barring any kind of chest infections which could take me out in a matter of days. Each day is precious and the things that really matter become very clear. Like the old saying goes "Nothing clarifies your thinking more than to know that you will be shot at sunrise!".
