Sunday, 8 December 2013

It's Not Just My Disease

It is important for me to remember that this voyage is not mine alone nor am I the only person in my group of family and friends who is being touched by ALS. I forget this sometime, sitting alone with my thoughts as I do so much of the time. Each day as I write this blog I work to focus on sharing my story, yet so often I forget the pain and emotional turmoil that my illness has wrought on those around me who have seen the decline, seen me go from an active, vibrant man to a denizen of the wheelchair set, failing in so many ways.

Last night I was at a friends place for Christmas dinner. In our group there are a number of us who will host these kinds of events. I have one this coming weekend, our annual gift exchange. Yesterday was dinner at Kay and Walter's place. It was an evening I was looking forward to, an opportunity to share laughter and fun with people who I trust, who I know care about me.

Getting in the front door was a tremendous hurdle. Their home has a very small vestibule entry with a large step up to the porch and two small steps at an immediate right angle once you enter the doorway. A couple of the guys grabbed my wheelchair and hoisted me up the outside step. Then we got into the vestibule and found we could not turn the wheelchair sideways to make the next two steps. I was stuck!

I looked at the situation and made a decision. I slid out of my wheelchair sideways onto the smaller steps. Then I slid up onto the floor, my useless legs dragging behind me, until I was well into the house. The guys lifted my wheelchair in and Walter tried to lift me up so the chair could be positioned underneath me. Unfortunately I am taller than Walter when vertical and he was unable to get the final two inches of lift. I asked him to put me down and the arguing began amongst the assembled spectators as to what to do with me.

Needless to say, I was not happy. With all the chatter going on and nobody actually looking at my situation through my eyes, I yelled "Shut up!" They did, all understanding that I just needed a moment to gather myself together. Then I slid over to the stairs and lifted myself up the first three steps. From there I got one of the guys to hold me under my arms while I did the transfer. Good thing too, for without that hold I would have gone down like a sack of flour.

Once in my chair I rolled into the kitchen. I was shaking from the emotional and physical effort, barely able to hold a plate or glass. It took me over an hour to finally settle down, to de-stress from the whole entry process. Towards the end of that hour I was sitting alone in the kitchen, trying to gain my composure, trying to catch my emotional breath. Walter came in and sat with me. I said to him, "I am beginning to isolate myself, to stay away from things like this."

Walter knew I was talking about the entry, but then he said something that really surprised me, something that really hit home. He said "Richard, you have to remember that this disease is not just affecting you. It is affecting each and every one of us. We see your illness and bear a deep frustration about our inability to do anything about it. We love you and care about you, and we are losing you, and it hurts us too."

There are plenty of times when I feel like I am making this journey alone, like I am the only one affected by this. Ultimately, the truth is that I am alone, that I am the one with ALS. But this disease touches so many about me, hurts so many of those who love me, frustrates so many of those who care for me. I need to remember this; Walter was right to remind me.

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