Sunny Outside, Dark Inside

In Vancouver it's another beautiful spring day. Warm with clear blue skies, the air wafts in off the ocean redolent with the smell of the sea and the moisture that can only come from the open Pacific. Everything here is green, everything grows here, even the stuff you don't want to grow. If I were a plant I would bury myself waist deep in the rich soil of this Fraser Valley and regrow then nerve roots that are dying within me. Alas I am not a vegetable, at least not yet.

I am angry right now, emotionally distressed and seething. Nothing did this to me, no "one thing" triggers this. It is a collection of things that eventually get me to a place where I see the unfairness of my disease. It's the waitress yesterday treating my like I was a mental retard because I was in a wheelchair. It's my inability to climb stairs, needing to wait for the help of others to simply enter a house. It's driving past my one-time home and realizing that "she" still lives there in peace while I die this slow death. It's realizing that I followed the "rules", did the right things, worked hard, paid my taxes, raised my children and now I get to die from whatever part of ALS takes me. Yet others who broke all the rules, abandoned their families, cheated on their wives, refused to work or behave like responsible citizens get to live and enjoy life. There ain't no justice.

I rage at the unfairness. Some of you will say "life isn't fair." Get a terminal illness and then tell me what you think. It's easy to say "life isn't fair" when it's not being terribly unfair to you at the moment. Think of the cruel irony of it. I finally get free from a difficult marriage after 32 years of trying, working, giving, carrying the load, paying the bills, looking after my family. Now I have 32 months, and for this last time of my life I am once again trying, working, giving, carrying the load, paying the bills, looking after myself.

I rage at the emotional unfairness, the physical unfairness, the reality that each moment this terrible disease is eating away at the edges of my vitality, snipping the thread of my life shorter and shorter. It steals from me, not just my physical strength but my spirit, my emotional strength. With every tick of the clock I am lessened.

It's hard not to let this anger out, not to let it leap from me unexpectedly, taking innocent victims with it. It's hard not to let these emotions go wild. Managing myself is tiring, exhausting. I need those who help me, and I am angry that I need them. This too must be managed.

Sometimes it's all too much.