Tuesday, 8 November 2016


I struggle with aloneness these days. Not loneliness, although there is a bit of that tossed in. My struggle is with a sense of being alone no matter what I do, of isolation. It's important to note that I am not actually alone all that much. It is a rare day where I don't have a visitor, or find myself going out to something social. Certainly I don't get out much anymore, but my friends increasingly bring that socialness to me, as does my daughter Kate.

The struggle that I have, that sense of isolation, is not all that uncommon for people in my position, people dying from slow, debilitating illness. Whether it is true or not, I and many others like me, live with the constant feeling that nobody gets it, that nobody really understands what it is like to go through this illness. You see, there is nobody on earth who can say "I had ALS once. I understand." They're all dead.

There are those who say they have ALS now, and are still living with it. The problem is that everybody experiences this disease in a slightly different way. There are no typical PALS; we are all unique. Part of that uniqueness is a function of how ALS works within us. Part of that uniqueness is our mere humanity. There is nobody quite like me; there is no disease quite like mine.

On top of the psychological sense of isolation and aloneness, there is the reality of what this disease does physically. Each day it limits me more and more. Each day it increasingly difficult to share in the human experience. It's too hard to do so many things. Going to the mall takes effort, too much effort. Transferring to my power chair takes effort, too much effort. And all along, there is nobody there to share this burden, nobody to encourage me, to help me understand, to hold my hand along the way.

The thing is, even with somebody there to give my that physical comforting, to take away the physical side of loneliness, there will always be the sense of aloneness in this disease. It is always with me, in a crowd, with a special person, with family, with anyone. No matter what happens, my disease happens to me alone.

Of course this is true for everyone. Everyone experiences their own life, through their own lens, alone. Everyone dies, and everyone experiences death individually. My problem is not dying alone, it's living alone, living through this illness alone, even when I am not alone. I live perpetually with the feeling that nobody gets it. That's what the aloneness really is. That's the isolation.


  1. Just curious if you are able to see Katherine at all these days?

    1. Yes, I see her periodically, when she is available and will come over.