It's clinic day today; the day where I make the long trek to the Calgary South Health Campus, pay the $13.50 for parking, go up to the ALS Outpatient Clinic on the fifth floor, and have them tell me pretty much what I already know. In fact they don't really tell me anything; they ask me things. After I tell them, they go "yep, seems like that to us too".
I am pretty sure I know the outcome of this visit already, and it won't start for another hour or so. They'll tell me my progression is slow but steady. They'll tell me that my arms are fulling involved and getting weaker. They'll tell me I need the new dosage of medication for PBA. They'll tell me they are not sure how long I have, but it is most likely within the 12 to 24 month range.
There is a game I play with myself on these days. Actually it is more of a dream, a hopeless dream, that I play inside my mind as I make my way to the hospital. I have this dream that one day, in the midst of one of these clinic visits, they will say "Gee, Mr. McBride, we were wrong. It seems you don't have ALS after all. You have blah, blah, blah that imitates the symptoms of ALS. It can be easily cured by getting rid of the blah, blah, blah in your system. The damage isn't permanent; you are going to get better."
This is, of course, a hopeless dream. It's just not going to happen. There are other, less hopeless dreams I can have, dreams that might possibly come true. I can dream that my progression will slow even more, almost to a stop. I can dream that there might be a treatment for ALS before I die. I can dream that there is a way to stop my hands and arms from shaking as they get weaker. I can dream of all these things, and there is always a distant hope. I suppose that is mostly what keeps me going in this hopeless situation.
There are those who will say "At least you didn't have Ebola". I would happily trade; at least half of Ebola patients survive the disease. There are those who say "You can't give up fighting". Sure I can; in fact one day I will give up fighting. It's just reality. There are those who say "You've got to think positively, have a positive mental attitude". In the face of this awful and insidious disease, I think I do a pretty good job of staying upbeat and lively. One day, of a certainty, all the PMA on the planet will not stop this disease and it will kill me. I just try not to think to much about that day.
I think of all of this stuff when I go to clinic. Mostly I try to find ways to deal with the everyday stuff that goes with ALS; medications for PBA, medications for DVT, medications for clonus and spasticity. All the rest of that stuff is just dreaming.
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