A few months back, I read an article on Spinal Muscular Atrophy research. Considering I have Type III of this degenerative, progressive muscle disease, I try to keep up on all of the research news. One thing that caught my attention was a statement that one in my position doesn’t want to imagine is true, for fear of getting my hopes up only to be disappointed. This statement made the claim that a cure for SMA will come in the next five years.
All of this fear and uncertainty and hope floods through me at the thought of a cure. What does this mean for those of us with SMA? What will a cure do for us? Will it reverse the muscle weakness? Will it make our muscles stronger? Does this mean some of us will walk? What will a cure do? That uncertainty is nearly as scary of the prospect of being promised a cure that never comes.
Don’t get me wrong. I am not a whiner. I don’t want to say I don’t care about being in a wheelchair, because if I had the choice of wheeling or walking, I’d choose walking. But…I have accepted my disability. I don’t believe in whining about the fact I cannot walk. What a waste of time. I have no complaints. I attempt to adapt and improvise to whatever is thrown at me.
The uncertainty is what I am the most worried about. Nobody can seem to tell me what a cure means. Does it mean I’ll be putting my life on hold to go through PT and strength training? Does it mean I can even recover any muscle strength? Some have told me I’m hopeless. At 28, I’ve had too many of the effects of SMA wear and tear on my body, and any cure is too late in the coming. Is it? Would I be better served if a cure had come a decade earlier?
I guess the scariest part is the what ifs. I’d love to see the youngest generations benefit from a cure. I’d also like to know if I should maintain hope, or if I should just give up and realize this is as good as it gets, and living an adapted life, though inconvenient, is the best way to live. Anyone have any ideas, of what a cure means for those of us with SMA? If you do, I’d love to know.