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In preparing for this project, I've been busier than I've ever really been.  The week prior to leaving for Detroit was a mess of contacting the right people, buying the right gear, creating online content, etc. This left me more exhausted than I realized (I semi-realized it, but thought I could change reality by the very act of denying its existence. Guess how well that went . . . ), and my health went into a minor "crash" after the first day of walking.

Starting out was nice though; I began off of Lake St. Clair, on the grounds of the Edsel & Eleanor Ford House, a stately estate if there ever was one, and a significant part of the history of Detroit (if you're curious read more here). Being in - and getting to walk through - Detroit has a certain personal significance for me.
My Great-Grandfather worked at Ford's River Rouge Plant, and a lot of family on my mother's side still calls the greater metropolitan area home. All the time that I've spent in urban Detroit and the surrounding suburbs I've found to be endlessly interesting. It's amazing the degree to which Detroit has found itself in a state of quiet crisis and expansive decay, and yet how beautiful it still is, and I hope to be able to explore this as I'm walking and to report my experiences back to you.

That first day - Sunday the 19th - I walked for about half an hour and stopped to check myself. One of the most common (and least-understood) elements of ME/CFS is what's called Post-Exertional Malaise. After any sort of physical or mental exertion, many patients experience a correlated, dramatic rise in the severity of their symptoms for a disproportionately long period: this is PEM. The degree of exertion and the resulting downswing in energy varies from person to person and with the health of the patient. Doctors don't understand why this occurs  (though your donations are funding research into PEM at the the University of Wisconsin-Madison), and many physicians tell persons with ME/CFS to simply exercise. This usually only makes things much worse for them, damaging their health, and (at least in my case, which I believe I can extrapolate from) their psyche; it's very frightening when the prescription of a Doctor - a person automatically perceived to be of highest Authority, one whose mere image carries the implication of total access to thousands of years of esoteric knowledge - makes you worse instead of better. It starts to make you lose confidence in your sanity. Then you come back to the Doctor, and the Doctor tells you to simply exercise more, and you're forced to choose between what your little singular and insignificant mortal body is telling you and what this living, breathing, white-coated incarnation of all the capital-A Authorities you've been told since childhood to trust and respect is saying. That's not an easy choice. It's very hard, actually, and it makes you feel very lonely and very much alone.

After that half hour of walking, I began to notice my sweat was starting to sting and irritate my skin, and that I was developing a migraine headache. For me, these symptoms signal the potential onset of an episode of PEM, so I just stopped. I woke up at my host's (the wonderful Gladys Stebbins!) house, evaluated my energy level, and decided it would be best to rest for several more days. Since last Friday, I've been home in Grand Rapids, and plan on spending time just resting until next Thursday, when I'll begin walking from where I left off. 

Living with ME/CFS requires learning to manage, being honest with yourself, and acknowledging the nature and degree of your limitations. This isn't fun - I wish I could just walk across the state in a week or two, like most fit young people probably could - but I can't, and I've learned to accept that. I've also learned that I cannot let ME/CFS entirely determine what the story of my life will be, and this is why I'm choosing to walk across a state. It will be a long and difficult journey, but I have all the faith in the world that I will one day set foot in Lake Michigan. It will simply require persistence, moderation, and the careful monitoring of my health, which I (and those who care for me) are committed to. 

I apologize for not updating more frequently; I will try to get a post in every week at least, and hopefully every few days, so you can be informed of my progress. I will have a web Support Team which may occasionally post of my status on my behalf when I don't feel quite up to it. I want to thank all who've donated so far and all those who've expressed their support. I've met a lot of wonderfully kind people so far, and am excited to eventually get back to the walk. You'll be hearing again from me soon.

Koerner
 


Comments

05/02/2013 2:47am

I appreciate your effort for raising fund for the CFIDS Association of America. The walking that you made from Michigan, Detroit to Holland is very impressive. You mentioned that along with the walk you made public awareness, that is really good. Thank you.

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09/24/2013 3:34am

I would like to thank you for your nicely written post, its informative and your writing style encouraged me to read it till end

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