Monday, 29 February 2016

How The Hell

I'm feeling really down today. It's interesting that I can feel this way and not contemplate suicide. That's the medications working. I am allowed to be sad, to have a down day, without it turning into a drama filled, internal battle over whether or not life is worth living. I don't want to die, I just feel sad today.

It's that kind of day where I ask myself, "How the hell did I end up here?" How did I end up living on Disability and AISH when just a short few years ago I was doing well in a high paying career? How the hell did I end up with an illness nicknamed "the bankruptcy disease"? How the hell did I end up with Home Care Aides, nurses, doctors, therapists and all kinds of others looking after, and looking into, my life?

I'm getting weaker every day, and it really sucks. I exhaust faster and with much less effort than ever before, and it really sucks. I'm tired all the time, and it really sucks. I know there are good things in my life, and I work really hard to focus on them, to enjoy them. It is in my nature to find solutions, to make things work, notwithstanding what is happening to me every day.

Then, some mornings, some days, I wake up and the whole impact of ALS really slams into me. It's not the normal "ah shit" that I say every morning when I wake up; it's more. I wake up with a full, internal, gut wrenching sense of what I am truly living with, what I am truly going through.

It's not about "why me". Nor is it about "poor me". There is no reason why my life has turned out this way, nor is there anything I could have done to stop it, to prevent myself from getting ALS. As to "poor me", it's true that I engage in moments of self-pity; I have that right. What I don't do is live there. I just get up and keep going.

This morning is not a wonder about what I did to get here. This morning is not a self-pity party. It's just me wondering, thinking about how my life has turned out so much differently than I expected. I followed the rules, worked hard, paid my taxes, raised my children, gave to charity, was generous to all those around me. Yet here I am, dying slowly, this disease destroying my body, my life.

How the hell did I get here?


  1. Ah shit Rick. It is such a bad place to end up. My heart is aching for you.

  2. Unfortunately I am not too far behind you. Diagnosed one year later. Still walking but my arms are shot, muscles are going. It's just a matter of time. Odd that in my dreams I am still normal that gut wrenching feeling hits me upon waking. When you dream to you still see yourself as you were before ALS?

    1. Sometimes I see myself with a wheelchair but I am able to walk. Sometimes I see myself as able bodied. But I never see myself as being trapped in my chair or unable to walk. Probably just like you.

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  4. Thank you for your reply. One of the small comforts I have is on the occasion I dream I'm still intact and strong. Maybe it is the last remnants of the 'self-image' I wish to preserve.