There are times, plenty of times, when I feel very alone in this process, this march to the beat of ALS and its ultimate end. Dying is the most individual thing any of us ever does. At no point in our mortal march do we have any other thing we do where there is no possibility, nor eventuality, of someone being a part of it. Even our birth is an experience we share with our mother, some fully and some less so. Dying is a solitary business.
Living, on the other hand, is anything but solitary. Even when I am shut up alone in my apartment, as I am today, I am in constant contact with the world around me. Even when ALS takes my body completely, my mind will still be active; with any luck communication with others will still be possible, even enjoyable. I need to remind myself on a regular basis that what I am doing is living. The dying part only takes place at the very end, even though that end is in sight and the pathway is well lit.
There are a great many others with whom I share common life experiences. I am surrounded by men and women who are as frustrated with their love life as I am with mine. I am surrounded my men and women who struggle with insomnia as I do. I am surrounded by others frustrated by their physical limitations. I am surrounded by people with emotional issues, physical issues, social issue. I am surrounded by people, period. Struggling with life is a part of the human condition.
Consider that most obvious representation of what ALS has done to me; my wheelchair. Almost every time I go out I see someone else in a wheelchair. Some are in their chair for short term reasons; for others it is a lifetime experience. There are people who are in wheelchairs from ALS, from cancer, from MS, from car accidents, from work injuries, and on and on. I am not the only person who struggles with a wheelchair.
Then there is the emotional side, the proximity with which I must view my own demise. I know others, I have had friends, who have had to go through this process, to go through their own march to death. The only thing I might say is a bit different for me is that my disease process can be more disheartening; there is no treatment nor cure. Ultimately, however, we all face the imminent prospect of our own end. We all must face these emotions one day.
The damned thing is, it's all so personal. What is happening to me is happening to me, not anyone else. My process, my march, is a solitary one. The physical aspects of it may be common to others, but none are on this road with me. Even those with ALS have different paths from one another; uniqueness in presentation is a hallmark of this disease. I am alone; the things I deal with may be common, but my experience of them is unique to me. Isn't it this way for all of us?
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