Wednesday, 9 July 2014

In Balance

There are two sides to my life, two opposing forces held in balance by the weakest of me, two constant reminders of the push and pull of my life. There is the side that is joyful, grateful, happy, up-beat and positive. There is the side that is dark, angry, frustrated, hopeless, ready to give it all up. Sometimes the smallest of events can shift my balance. Usually the shift is manageable. Most times I can slide the weight back to centre-point, bringing balance once again to my life. What's really interesting is how small something can be to remind me of both parts of my existence.

This morning I woke up with the thoughts of clinic day. Today I will make the long trek to the hospital way down south in Calgary. There they will measure my muscle strength, weigh me, test my lung capacity, ask me how I am doing and how I am feeling, ask me what I need in my life to make this process easier. Of course there will be no discussion of treatments or cures; that simply won't happen.

There may be discussions about medications to deal with the side effects of ALS, things like changing from Warfarin to some other anti-coagulant for the DVT in my left leg, or perhaps increasing the dose on the medication for the Emotional Lability that is a part of ALS for me. There will almost certainly be discussions around home care, physio-therapy for dying muscles, the emotions that are a part of my life.

All of this is very depressing, very saddening. It takes a great deal of effort and strength to go, knowing full well that all I have become is a tick-mark on a medical chart. There is no treatment, no cure. I wonder why we are doing all this work so that nothing can be done. Thousands have gone through this before me; I offer no new data. Yet I go, refusing to give up the myth that all this makes a difference.

Then, after getting dressed, I was in my wheelchair in the dining room and wondered where I had put my cell phone. I quickly rolled over to the bedroom, rolling halfway through the door to look on the dresser. It wasn't there; I realized I had already put my phone in my pocket. It was one of those minor memory lapses we all have from time to time; no big deal. As I rolled backwards out of the door, I bumped into the bathroom door frame across the hallway.

It took me but a moment to make a full turn in the hallway, a hallway that was wide enough for my wheelchair to turn around. In that instant I was so grateful for my renovations, for the work done by my brother Jim and my friend Mike to widen that hallway, to make it possible for me to move about in my apartment. I was grateful for the work of so many others who helped me make my home workable. I was grateful for my laminate floor and the wide doorways, for the ease in dealing with this physical aspect of my life, for all that I have in this place where I live.

It is a measure of my daily life that these kinds of things happen often, where I am reminded of the frustration and anger within me, of the sadness of ALS. Yet at the same time, often at the very same time, I am reminded of my good fortune, made grateful once again for the life I get to live.

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