I am disordered and disabled but not diseased. Now, you may be wondering what on earth this topic has to do with cultural perspectives, and as I’m writing, so do I. Perhaps as an artist, it has to do with the disability I have (multiple sclerosis is a disorder not a disease) that can often keep me from doing what I love, which is a lot more than just painting.
My life has been full of disorder for several months now, with the upswing of MS leading to a downswing of ability and order. It spreads like a disease.
We’ve all been told the stories of how the infirm and aged (lots of the three Ds there) in some cultures are cast out — left in the deserts of sand or ice, sometimes put out to sea. Then there are stories of the members of the community turning their backs on those who are not ordered, able or at ease. Shunning those whom we consider different (a fourth D) is something that still goes on even in our own culture.
I have spent years trying to take the “dis” out of disability and disorder and tried to become at ease with disease. It is not an easy task. I live in a never-ending cycle of wellness/illness. Sometimes I do so well that I tell myself that I’m cured, then try to attempt and accomplish all manner of things that I’m unable to, because I’m not cured — I’ve just become so at ease with disease and become so (dis)abled and ordered that wellness for prolonged periods of time leads to a psychological war in my head, with the rational part of my brain giving in to the part of me that says, “No, really, this time I’m sure I’ve cured us. You’ll see!”
Perhaps that is what this column is really about: the sense of failure that I never thought I’d get over. Even though I have accomplished many incredible things since I became disabled, I still find myself from time to time wishing I were healthy and whole. I still cringe when people offer me pity and sorrow instead of empathy and understanding, though I’m able now to respond with a smile instead of leaving in tears. When I was younger and used a cane, I told one person in a moment of weakness that I’d been bit by a shark while scuba diving in Australia and was still in recovery. (Thank God they didn’t want to see the scars!)
They say that MS is the invisible disability, disorder, disease. Because you can’t see it, you don’t believe it’s real (this is a delusion that I still suffer from at times). Whenever I feel well, I head off hell-bent for leather because I have so much to make up for. What I have to make up for I really don’t know, because I am always, no matter how I feel, doing as much as I can.
I think in the end, it is our culture’s push for perfection. The fact that we are supposed to go, go, go, get, get, get, be, be, be. I suffer from feeling like I should be on the rollercoaster — for years, I suffered from the feeling that I’m less because I’m not able anymore. Having been part of the push for perfection, it was a long fall, and took a long time to orient myself into the strange world I now live in.
Periodically, I still fall prey to the wish for perfection, push myself too hard and… lose the ease in disease, the order in disorder and the ability in disability. There is a Japanese proverb that says, “Fall down seven times, stand up eight.” I think I’m on 35/36.
Lori Wikdahl is a Creston Valley artist.
