Saturday, 13 September 2014

It Takes A Lot Of Work

One of the toughest things about ALS is keeping a positive and enthusiastic outlook on life, to live with any sort of hope whatsoever. It's tougher than the physical challenges, and even tougher than the emotional challenges. It takes a tremendous amount of psychological energy to get up, and stay up, in the face of this horrendous onslaught.

Today is a good example of what can pull you down and how much you have to fight it. My left arm is essentially useless today. The other day one of the guys I hang around with punched it to make a point, the way some guys do, as if the physical pounding would drive home is idea like he was pounding it into wood. Unfortunately my arms can no longer take that kind of thing; they damage too easily.

So this morning when I tried to get onto my bed to get dressed, I couldn't. I had to resort to using my lift sling, the one that is sized incorrectly and hurts my legs when I use it. There is a new sling coming; it will be here in a week or two. I didn't think I needed it yet. I had to do this because my arm hurt too much to lift my weight out of my wheelchair. Trust me, I'm going to tell my buddy about this, but the damage is done.

I managed to get onto my bed and get dressed. Shortly I will go out to do some shopping and to attend an ALS support group meeting. While there I will be cheerful and upbeat. Some of these people are in way worse shape than me; they would happily trade me places in terms of onset and progress. I will try and share positive, humourous stories about life with ALS, life with a wheelchair, life with lift systems and bathroom bars and specialized toilet seats. I will try it, and I will do it. It takes a lot but it is something that I believe in.

This is a hopeless disease, unlike cancer or diabetes or even Parkinson's. I cannot take chemo or radiation. I cannot take pills or modify my diet to make this disease slow down or go away. The losses from this disease are irreversible and unstoppable. Yet in the face of all that, people want me to talk about hope, need me to talk about hope, beg me to talk about hope. That takes a lot of energy, especially when there is no hope.

What I have to do is find hope, positivity, enthusiasm; all from within me. I have to find the things I can be hopeful for, the things that make my life positive, the things that give me enthusiasm for living. This disease may be hopeless but life is not. This disease may breed negativity, but I don't have to let it breed within me. This disease may sap my enthusiasm for living, but I don't have to give in completely.

Just remember, it takes a lot of work.

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