Hello to everyone who's been following me, and thanks to all those who continue to donate! The walk is almost done - I give it a week and a half, not quite sure of a final date yet, but I'd like to give it one. That'll take a little bit of figuring and coordination. 

Recently, I've been taking a few days off, spending time at my home in Grand Rapids. I've had interviews with WZZM13 and with WGVU radio. I want to thank Amy Fox and Shelley Irwin (respectively) for those opportunities. I'd also like to make clear a few points about my walk and about ME/CFS in general here.

1. MOST PERSONS WITH ME/CFS COULDN'T DO THIS
I'll tell you a story. Before starting this walk, I bounced the idea off of an internet forum dedicated to ME/CFS sufferers. The response was overwhelmingly negative. I think there are a lot of complicated reasons for that, reasons I won't go into now. Basically, people felt that by doing this I would promote the idea that ME/CFS can be conquered by force of will . . . and that therefore, those who aren't doing something like walking across a state are simply lazy. ME/CFS is something that cannot simply be ignored, and sufferers have to pay attention to their bodies' reactions to mundane exertions, so that they don't "crash" and experience Post-Exertional Malaise. This leads me to my next point;

2. WALKING ACROSS MICHIGAN IS NOT QUITE AS GRUELING AS YOU THINK
Unfortunately - and this has hurt a little, personally - a common response people have given me when I've told them about my condition and my walk is as follows: "How can you do this if you supposedly  have a disease that makes you tired all the time?" This seems like a valid question. My response to it: "By doing it very, very slowly." While preparing for this walk, I contacted a couple people who had walked across Michigan for different causes. One told me that he had done it in 9 days. Another man told me he had done 35 miles every day. 

So far, I've been managing about five miles a day; some days I've hit seven, but some days it's taken me six hours to walk only two miles. In other words, I am unable to do what a normal, fit person my age could. This is something I've come to accept. I've been forced to manage my energy, to be economical with it, and to acknowledge my body's occasional unwillingness to work with me. When I'm feeling I'm doing too much, I have to stop. This has been frustrating, but it's been something I've had to accept.
 
3. "CFS" IS A TERRIBLE, TERRIBLE NAME
Another reaction I've come across when introducing the walk to strangers has been something like this: "Chronic Fatigue Syndrome? Never heard of it, think I might have some of that." While CFS does affect about a million people in the US, it's more complicated than the name implies. Most people experience occasional fatigue. Most people lead pretty demanding lives, and the body is not a perfect machine. Some people may even feel that they feel fatigue a lot of the time - thus, they must be "chronically fatigued." The name "Chronic Fatigue Syndrome" invites trivialization of the disease and ignorance of the degree of suffering it causes. This is why I've tried to use ME/CFS for the most part; "Myalgic Encephalomyalitis" sounds forbiddingly medical to most people, and they consequently take the illness a little more seriously. They don't have the immediate reaction of trying to map what they hear on to their own experience.

I was planning on writing a little more, but am exhausted. Hope this was informative to people.

- Koerner
 


Comments

07/14/2013 11:20pm

Some in the medical community do not recognize CFS as a real condition, nor is there agreement on its prevalence. There has been much disagreement over proposed causes, diagnosis, and treatment of the illness. Thanks for sharing.

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