I am struggling this morning, dealing with sadness, depression and pain. It's not particularly surprising that these things all conspire against my well-being. Awakening in pain makes me realize how damaged my poor body has become, how much of my strength and recuperative powers I have lost. Wincing as I make my early movements, the painful slide into my wheelchair deepens the darkness begun in me by the pain. Then I realize how hopeless all of this is; my sadness is complete.
There are other things that combine with my morning's trial and toil, other things that weigh on me. Today my brothers and I will discuss where I should live and how I should manage my limited capital. Today we are talking about more changes, more that I must give up, more limits to my life. This is heavy emotional work; the hardest thing for any of us to do is to face our grim realities, to deal with our harsh limitations. I have begun this process already, putting some thoughts and possibilities in place, yet there is more to do and do it I must.
The loss of my youthful strength and vigour is another burden I must bear. The word "old" is starting to show up more and more in conversations with friends and family. I am old before my time and not the good kind of old. Words like venerable, experienced, mature or seasoned are not in my lingua franca; more like grizzled, debilitated, decrepit, and infirm. My life was supposed to be a graceful transition through the decades, easing my way from young to middle to older to old. This disease has accelerated that progression, leaping out of middle, past older and directly to old, to exhausted. I did not pass "Go"; I did not get $200; I went directly to jail, the prison of my chair.
The loss of my life is so little when compared with the losses along the way. The steady drip and grind of ALS, stealing from me mercilessly, wears at my very soul. It pushes away hope, clouding my horizon near and far with black. Each morning I awaken to wonder what will be taken from me today, what insult to ego and person will become the next thing. What will I lose today?
I am tired. I want to go back to bed, to cry, the tears bursting from eyes, explosive saline droplets wrought from the emotions I bear. I want to give up, to stop, to no longer be faced with hard decisions thrown from an even harder reality. I want to live; I want to love; I want to laugh. That is going to be hard today.
Richard, reading your blog today makes me sad. I wish I could do something or say something to brighten your day. ALS makes my own diagnosis seem insignificant although one can easily become fatal and the other might eventually put me in a wheelchair. I still can live a normal life with some restrictions. Not having the diagnosis that you do I can still empathize . Make the best of whatever time you have and find the joy in the small things when you can.
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