Saturday, 4 March 2017

Now You See It

My hands and fingers hurt today, that aching kind of feeling I get in my muscles thanks to ALS. My arms too, both left and right. This is kind of problematic, as it means there is loss taking place on my right side, in my right arm, very clearly now. This is what happened to my legs. The left went first, followed almost immediately by the right. The difference was subtle; I'm probably the only one who noticed it.

It's really difficult to understand this disease, to see if for what it is, for when it comes, unless you are paying very close attention. For me the progress has been so subtle that I have been the first to feel it, long before the neurologist, and well before any lay person. I feel it much more than I see it. I can tell when something is changing, even when others are not so sure. Of course it's easy to peg some of these changes as the simple effects of aging. I know my body pretty well. Aging may play a part. Perhaps my arms and fingers are sore today because of age and arthritis. I doubt it. I can tell the difference.

I have a friend who has terminal cancer, treatable, they can slow it down, but terminal in about 8 - 10 years. It will never be stopped. That same friend has two replacement hips and one replacement knee. She is younger than me. Today I saw a picture of her out on the ski slopes. There she is, terminally ill, filled with replacement parts, able to hit the slopes for a terrific day. Oh how I envy her.

My terminal illness does not work that way. It cannot be slowed, treated, ignored, replaced. I can't hope to get back on the slopes one day, although cross country was always my thing. As I looked at her, I thought once again to myself how a nice, simple, terminal cancer would be so much better than this. Regardless, with my luck I would get one of the nasty ones with lots of pain and suffering.

So I go out into my world today, alone in my pain, alone in my suffering. Of course, so does everyone else. We all carry our own suffering with us, be it physical or mental. Mine is just made manifest in a failing form. In my suffering, I find little or no hope. I cannot look forward, there is nothing to see. All I can do is try to enjoy what I can from today. I enjoyed seeing that picture of my friend skiing. I enjoyed hearing from my daughter. I am going shopping for a few things, something I always enjoy.

That enjoyment will be as private, as hidden as ALS. Some parts will show. Some smiles will be obvious. Some of the joy will dwell deep within me, reminding me that life is still worth living, in spite of the suffering and pain. That joy is mine. I plan on keeping it.


  1. Your resilience and tenacity are inspirational. You are an amazing fellow!

  2. You keep that joy, please Richard. As hard as it is, it is yours. I share your feeling of knowing what's going on in my own body and differentiating it from typical aches and pains. I always get achy in wet weather, for example, and I can tell those pains from ALS muscle pain. <3

  3. Your honesty is so inspirational...I can relate to every word tho I would not have thought of the words myself.