10.30.2016

"Suffering from MS" & The Affordances of Disease

I tend to think that how we say things matters a lot, and the phrase "suffering from MS" or "suffering from multiple sclerosis" has never really felt right to me. Of course, MS isn't the only thing that people suffer from, and it can involve a fair amount of suffering, but to necessarily and matter-of-factly introduce suffering into a linguistic equation seems pretty final.
If you've seen the short film about Kayla Montgomery or read about her, then you know that while she "suffers" from MS, Kayla also triumphs as a runner because of it. (Or at least she did when the film was made.) In the case of Kayla Montgomery, MS is taken up as having certain affordances that enable her to do things she could not otherwise do. When she heats up and her MS pseudo-exacerbates, she can run harder. 

An "affordance" is just a fancy way of saying a possibility or potential. The affordances of a thing are all the things that can be done with that thing, and when it comes to diseases in general and autoimmune diseases in particular, a disease might be said to have certain affordances.
This is a different way of thinking about disease, it seems to me, and it might not always work or make sense, but it certainly contrasts with the idea of only and entirely "suffering from a disease." When we suffer from a disease, it gets the best of us. When we discover and exploit the affordances of a disease, we find things we can actually do because of or with the disease. This may sound naively optimistic, but I like something about this kind of reframing. 
It may only be that some folks with Grave's Disease can pop their eyes, and while it may be nothing more than a parlor trick -- but it seems like an affordance of that disease that some have fun with and enjoy it. Kayla Montgomery finds that because of the way her heat-induced pseudo-exacerbations work, she can run through the pain.

For me, I'm still exploring the affordances of MS and working daily not to think that I'm "suffering from" this disease. There certainly has been suffering, and there will likely be more to come, but there have also been many calm and pleasant times between the rough bits. If I were to list three things that I've actually taken from MS and see as positive things, it might look something like this:
  1. a heightened commitment to purposeful living
  2. an understanding of my physical, emotional, and psychological limits
  3. a tangible, vivid realization that the future is unclear and may very well be unpredictable


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