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Monday, March 24, 2014

No Racing, Plenty of Pain

Imagine my dismay when against all examples of common sense, not just one but multiple people sent me copies of an article in the New York Times last week that profiled an 18-year-old athlete with MS. Apparently, against all odds, the girl was able to continue performing as an elite track runner despite being diagnosed with MS. As anyone who knows me well probably knows, I was once a runner too – albeit not quite so elite. And when I was diagnosed with MS in September 1997 I never ran another step.


The article frustrated me on multiple levels.

1. I feel as though the article lead readers to believe that with hard work and determination MS symptoms can be controlled or overcome. There is no truth to that sentiment whatsoever.

2. The girl in the article is remarkably talented, hard-working and obviously determined. However, she is not suffering from MS. She lives with the diagnosis, and will always carry the fear associated with the disease, but God willing she will continue to avoid suffering the effects of the disease that has the potential to ravage her 18-year-old body.

3. Healthy individuals reading that article are led, in my opinion, to believe that multiple sclerosis is not a disease that warrants donations for research. If I were looking to make a tax –deductible donation to a worthy cause, I would likely not send my money to the MS society (or to even the more worthy MS related causes) because nothing about that article made the disease seem problematic. In fact, there was a time in my running career that I might have read that article and been jealous of the girl because it seemed as though the effects of the disease helped her to run faster.

4. In addition to blatantly misrepresenting the disease, the article left me with what I like to characterize as ugly emotions: anger, jealousy, self-pity and more anger. As I read the hundreds of comments at the end of the article, I was confronted with additional cause for indignation. It seemed that every comment was another MS patient telling another story of athletic triumph. Let me clarify: I want no one to suffer the same disease course as I have. No one. Least of all an 18-year-old track runner. However, as someone who has slowly lost every working appendage to this disease, I was not left with one positive emotion after reading the article.

5. Anger, for me, is probably the least productive emotion I experience. Immediately after reading the 178th comment, I composed a borderline irate email to my doctor communicating a high level of frustration. He is a great doctor, and despite the fact that I have what my friend calls "MS on crack", I genuinely do not question either his level of expertise, his professionalism or his desire to help me. Still, however, who do I blame for the fact that this disease has robbed me of things I never even imagined I would miss? So I asked him, do I even have MS? Why can't anyone stop the progression? Why can't you fix me? Why, why, why!! I also direct quite a bit of anger at a God that I no longer believe has any interest in my health. And jealousy. Man the jealousy… Isn't envy one of the seven deadly sins? How though, how can I not envy those who have the same disease as I do and who, 20 years after being diagnosed, still participate in bike races or run half marathons? How can I not envy people around me who run and walk and stand without so much as a conscious thought? How can I not envy my friends and family members who can scratch their own faces, get on and off toilets without help, get on the floor and play games with adorable small children? I don't know. And sometimes I feel like my anger and jealousy are going to strangle me from within.

I have so, so much to be grateful for. And I am usually able to keep my ugly emotions at bay and maintain my perspective. I am not going to lie though, there remains a general level of sadness in my life that rises to the surface with a much higher frequency than I would prefer, a sadness that I try desperately to ignore. I have so many things to be grateful for in my life: for my friends, for my beyond awesome caregivers, for the beautiful house my parents were able to make completely accessible for me, for my almost perfect dog, and for a self that I genuinely like in spite of the body that I hate. But seriously? If my arm strength ever returns, and I ever put my eyes on the author of that article, she had better duck if she sees me coming.






3 comments:

Maria said...

Very well put, Kate. I have not yet read the article that you refer to, but I plan to. I hope that you sent your words to the author. Thanks for sharing this. Your blog is always amazing.

Anonymous said...

I agree. Your honesty is brave, beautiful, important and appreciated!

nicole monique said...

It's amazing to me the stupid things people will say (or articles they will send). I remember running into someone on the Ithaca Commons after my horrific & well publicized car accident. There I was with a cervical collar on my neck, a brace on my leg and a cane, and this idiot actually said, "so you're all better now, right??" Over many months of thinking (and quite a few hours of psychotherapy) I came to the conclusion that some able bodied people are so unable to embrace the realities of disability that they actually don't "see!" In other cases, I believe people who care about me are emotionally unable to accept my reality ("what if you worked out to strengthen your muscles Nickie?") and that in an awkward, painful way they are trying to help. They care about me so much that a part of them just cannot accept they things cannot improve with hard work. It still hurts, though. And I don't always have the time, patience or energy to explain what a spinal cord injury is or how my muscles are different from theirs.