I awoke again today thinking "Why bother?" Do you know how many days I wake up with this feeling, this thought, this sense of the pointlessness of all of this? A mere six months ago I was a dynamic man with a great job, a man with places to go and things to do. Now I am idle, purposeless, simply existing and taking up space until either my disease takes me or I take myself.
Before anyone gets afraid, I am not ready to go yet. This is not a suicide note, not by any stretch of any imagination anywhere. It is me noticing the changes in my life and how unfocused it has become. I have always needed something to focus on. When, in the past, I would finish a project it was not unusual for me to go into some depressive funk, easily attributable to the lack of something on which to focus.
The problem is that now there is no hope of another project, another focal point. There are those who would suggest that I go volunteer, that I do something for other people, that I gain satisfaction through giving of myself and my remaining days. That seems like a good idea on the face of it. My challenge is that I don't know what to give or who to give it to.
I don't have the energy or ability to do what I used to do, to do what I know how to do. It takes so much energy and work for me simply to go through my day. The "activities of daily living", that's the term the medical and professional community uses for what I do each day, absorb just enough of my energy to leave me with little more that the motivation to read or watch TV all day. The work of getting up, getting food, getting dressed, all these gettings leave me wanting, wanting for energy and enthusiasm.
Perhaps my focus should be on just getting through the day; I can do that easily enough. Perhaps my focus should be on finding something to focus on. One option would be to volunteer with the ALS Society, except then I will be surrounded not only by my own disease but by the frustration, pain and struggles of every other ALS patient in Alberta. Another option would be to find part time work, something to keep me focused and busy yet not so busy as to wear me out. There are options; I know this to be true.
First I need to focus on what to focus on. The rest should come together after that. My first step, as it always must be, is to put my left foot in front of my right, metaphorically since walking is something I no longer can do, and move forward somewhere, somehow. Maybe that is why I keep wanting to get away, go on a road trip or a boat trip. It is motion. I wonder what I will do when I can no longer get away? What motion then?
You can write Richard.Write to the world about your struggle or the struggle of other ALS patients. that would be a start.You may get picked up by someone. No I don't know who but it might happen. See if a newspaper would feature your struggle with ALS to inform the populace on this awful disease. It may work.
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Mom