Saturday, 18 October 2014

Good Fortune

There are days when I am pretty sad about my situation, hit low by my disease and what it has done to my life. Then there are days when I am reminded of how fortunate I am, how lucky I am to live the life I get to life. These days, like sun on a summer's afternoon, are a warmth in this winter of my life, a chance to remind myself of how great it is to be alive, how living is a miracle all in itself.

Today I went to the local ALS Society Support Group meeting. It is a monthly get-together for PALS and families here in the Calgary area. As you might suspect, it is a group whose population changes on a monthly basis as new people come in and others leave; by leave I mean die. You might think these events could be very depressing; with the wrong mindset, they certainly could be. It is, however, a testament to the people within the ALS Society that these meetings are often informative and uplifting.

The topic today was transportation and driving with ALS. I had been asked specifically to be there so that interested people could see the modifications to my truck; the lift system, the hand controls, the wheelchair crane. There was also a fellow there from Shopper's Home Health Care, a division on Shoppers Drug Mart, who talked about wheelchair vans and conversions. He, also a fellow in a wheelchair, brought a demonstration model for us all to see.

After a bit of talking about the whole driver's licence process as well as the vehicle modification options, we went outside to take a look at the demonstration van, and supposedly, at my truck. Everyone was fairly interested in the van; nobody came to look at my truck. I guess I was a bit disappointed. So I went back inside with everyone else for the social bit at the end.

I stuck around for a while, waiting to talk to Jane, the ALS Society Client Services Manager; I am a client. We talked about the van and truck, to which she commented that "this really isn't the group for hand controls." Most of the people in the room had "real" ALS, the kind the affects all of your body at once. I, on the other hand, have what is known as Progressive Muscular Atrophy, a kind of ALS that starts in one area and moves rather slowly to the other parts of your body. Mine started in my legs and has move slowly into my upper body; eventually it will get to the rest of my body, but not yet.

I asked Jane how many other people with PMA were in the local cohort and she said "None. We rarely see people with PMA like you." That's when I realized how right she was, and how fortunate I was. Even with a terrible disease like ALS, there are those who get it better and those who get it worse. Comparison is always a dangerous thing; we are prone to only see those better off than we are. Yet I did compare myself to the group, and realized how lucky I was that I could still drive, still travel, still had the enthusiasm, the energy to live.

This is a terrible disease; never misunderstand how hard it is. Yet as I drove home from the support group and as I sit here now, I continue to appreciate how fortunate I am. It's a funny kind of thing.

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