Hi. How are you?
I'm going to show you some pictures today.
Not too many, and with no logic to their sequence.
Regrettably, I didn't have time to edit them (to make minor adjustments to color, brightness, and contrast).
Hopefully this will whet your appetite for the time that I am able to organize my pictures to the extent that I can post all that I want to.
(That is how the whet in 'whet your appetite' is spelled. I didn't know this until recently)
By the way, though the actual walk is very much over, I've decided to extend the deadline for donation to the end of the calendar year.
I would be very happy if we could make it to $5,000.
Frankly, I'm amazed it's come even this far.
I don't know why these pictures are bigger than the others.
Or why this is small.
This here is also small, again inexplicably. I could probably fix it if I really cared.
I guess 'small' is a relative term and has no real meaning in this context.
I have no further comment on the relatives sizes of these photos and am at peace.
It's been a week since I've finished walking, and I'm sorry for not providing this space with any kind of conclusion. I'm doing well, but I've been resting a lot, and am focusing most of my energy on recuperating and internally processing my experience.
So my apologies for the silence if reading this is something that's important to you. That's really all for now, sorry for the brevity.
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The walk is very close to done, and I'm wearier than I've been in a long time. The temperature has been really cold, but being in near-constant motion certainly helps. I managed to make it through Zeeland to day, and ended up near the Holland water tower, before a dear friend showed up to give me a ride back.
I didn't make very many friends today; stopped at a Burger King to use the bathroom (I usually feel sort of guilty about it) and realized I look the child of the Unabomber and Jack Nance circa Eraserhead. In other words, frightening.
It's hard to believe that the walk - a thing that looks so big conceptually, so big on paper - is almost done. And will be completed with one single, final step.
I've often wondered during this journey what that step will feel like. I expect it to be no different than the others, but it will be given a certain meaning by all the steps that preceded it. There's something deeply strange about it all.
I'm certainly ready to be done; while it's been a great experience, and I'm quite happy with all the money that's been raised I'm . . . tired. Very tired. I'll try to update everyday until Saturday, when this whole thing is finished.
I plan on updating the blog for a while after I'm finished walking; I'll finally have time to put up some pictures and some things I wrote about the experience, so stay tuned for that
If a sane person is told over and over, by respectable, well-dressed men that she is crazy, she (being sane and rational, open to all possibilities) naturally begins to wonder if she just might be crazy. This question does not leave her and, eventually, succeeds in making her neurotic over the question of her sanity.
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.
I want to point out the fact that (as of some time late yesterday) the Walk Across Michigan for CFS has breached $2,000 in money raised for ME/CFS research. I want to extend my deepest gratitude to thank who has donated so far. It’s really incredible to me that this campaign has come so far – and it’s only half-done. Instead of relying on a few major donors, a lot of money has come from a lot of different individuals donating smaller amounts. This has been fantastic; more people are talking about ME/CFS, and a lot of money has been raised so far.
If you have somehow participated in this campaign by expressing your support by financial or other means, I’d like to ask you to do something; please talk to someone about ME/CFS. Someone who maybe hasn’t heard of it, or doesn’t know much about it. I desperately hope that this campaign will make some dent in the awareness of this illness. I personally spent about three years experiencing the things that many other ME/CFS patients will describe. I was told over and over again that it was “just puberty,” “all in my head,” etc. Lacking knowledge, orthodoxy fills in the blanks. If I can do anything to prevent people from going through that experience, then I’ll be satisfied.
Because it’s really easily to accidentally include ‘walking’ puns in writing like this (e.g. ‘the road less traveled,’ ‘one step at a time’) I’m going to go ahead and say no pun in the following entry was intended.
Today I walked through East Lansing via Grand River, on the edge of MSU's campus. I've made a lot of progress on the last week or so; I feel like I've found a good rhythm. Also, there are some people I specifically wanted to thank for taking my weary old self in. So, a big thanks to Kathy & Rick Johnston, Molly & Moses Johnston, the Grimas, Paul and Jeanne, and now, the Adams family.
I want to apologize for not updating very frequently. If I were to, I fear most entries would start with 'Today I walked from x to y.' However, walking does give one time to think, and I do have a lot of thoughts. Writing in this blog has been hard, because I have to tailor my writing to my audience and the broader goal of my campaign – I want to inform you about ME/CFS and make you feel like donating. However, I’m a person, and I have thoughts that aren’t in the voice of ‘the organizer of the Walk Across Michigan for CFS.’ Keeping a separate journal has been helpful. You’ll be able to read some more personal reflections in the next few days.
Being effectively half way done with the walk - I'm passing through Lansing - there are a few things I want to reflect on.
When I was first thinking about this walk, to an extent, I was bluffing (mostly to myself). The whole idea of walking across a state seemed like an abstract, herculean task. I can remember testing the idea out, framing it out loud to friends as a ‘what if.’ It felt distant (or rather, impossible) from that vantage point. Basically, I didn’t think I could do it. Eighty miles in, I’m struck by this. I would be lying if I said it has not been enormously difficult; it really has. At the same time, it’s simply been composed of a number of days, and those days have been composed of walking, eating and sleeping. Nothing impossible about the task when it is deconstructed. It’s just hard to see how the parts find their way into the whole. In this matter, you just need to have a kind of faith; a belief in yourself. As I said, I didn’t think I could do it . . . but I did it anyway. I don’t know why exactly. You’ve got to move with your instincts, listen, and take whatever next step you feel pulled toward. You have to trust that you’ll be able to take care of yourself (and that the majority of people are good). Bravery or stupidity, however the old line goes.
If there’s any knowledge to be gained from this that I might share, it’s simply to call your bluff more often. Something like that.
Overall I’m feeling good about the campaign in general. I appreciate deeply all the support I’ve received, the people who do not know me but’ve seen something in me, enough to give me a few bucks towards the fund. I also want to thank all the people – strangers to me – who’ve expressed their support for the walk (especially in the last 24 hours). It’s personally very meaningful to feel that I’m connecting with the really sick.
I hope to finish before I die of frost bite (I’m guessing early November), but am well aware that I can’t push myself very far without just crashing and messing everything up. More posts soon, I promise.
Thank you for your patience and persistence; it’s been a while since the last post. This is the Support Team speaking.
Koerner would like everyone to know he’s fine and we’ve all been busy with typical life events: he’s been working hard on college applications and essays, it was back to school for Mom the teacher, Dad started teaching his first-ever college class on top of his day job, brother Asa’s senior year of football started, plus dealing with a nasty flu in the family.
Since the last post, Koerner has completed over 60 miles—hooray! That’s a third of the total distance of 180 or so miles. He has now gone from the Edsel & Eleanor Ford home in St. Clair Shores, through Detroit on Nine Mile and Seven Mile, through Southfield on to the Milford/New Hudson area, where he was paralleling Interstate 96. Today he made it to beautiful downtown Webberville (population 1,272). Walking facts: he’s averaged about five miles per walking day; his longest day was 6.2 miles—doing segments of 1.5 to 2+ miles at a time. So far so good!
Highlights from the Road: St. Clair Shores to Milford
For several days, Mom was the Support Team, dropping Koerner off at the start of a segment, driving ahead to preview the route and then driving back to pick him up for a rest or lunch, then back to the start of the next segment. Then “rinse and repeat”—do the same routine the next day. Koern has also had overnight hosts—some friends, some family—who did the same for the next segments.
Dad also was on point for Support for a few days – fortunately some of those glorious sunny blue-sky days that were Septemberish and summerish all at once, the days that evoke the changes that having four seasons bring, and the days that people remember when they explain why they live in Michigan. Dad reports enjoying the adventure, the little surprises they both discovered, and hearing Koerner’s previously unshared tales from his experiences to date.
Those are Koerner’s tales to tell, but Dad can’t resist a few teasers (no spoilers). During his 42 miles to date, Koerner has stayed with family, friends and strangers. He’s had unexpected glimpses into other lives and cultures during some lifetime milestones of people along the way. He’s seen decay and abandonment and he’s seen active commerce and vibrant communal life unlike anything he grew up with.
At one home, a new friend shared a unique document with Koerner: a personal journal written every day from 1939 to 1946. It was an account by an aviation surgeon who served in England during World War II. Koerner was amazed to read the entry for December 7, 1942 as the author learned about the invasion of Pearl Harbor.
At another very different point on the walk, Koerner discovered a place where older men were playing with expensive and amazing toys (Dad enjoyed talking with them).
Koerner (and Dad) had experiences with wildlife as well, with some animals very mobile, others not very mobile at all, and still others very out of place. Sometime soon Dad will share some photos from his Support Team experiences; we’ll notify you here.
With the first round of college essays and apps nearly put to bed, Koerner picked up a few days ago where he left off, near Island Lake State Recreation Area in Brighton. The current stretch is Brighton to as far as Okemos/ Lansing/ Grand Ledge. Koerner is glad to be back on the road, especially before it gets cool.
We’ve extended the fundraising campaign on Razoo until October 30, which just happens to be Koerner’s twenty-first birthday. As we get near his home territory of greater Grand Rapids, Koerner will be doing more media outreach and emails to friends and acquaintances about the trip.
Again, thank you for following the Walk Across Michigan for CFS and helping Koerner to raise awareness and funds. For those who have made financial gifts, you have our deep appreciation!! Koerner is passionate about helping people, and as members of the Support Team we are gratified to see his determination, considerable efforts and achievements in carrying out the Walk to its conclusion, calendar be damned.
More from the road soon.
I started the walk again yesterday, and clocked in a total of two miles, which I am happy about. It may not be much, but it's what I can do, and I plan on easing myself back into walking as smoothly as possible. I'm feeling noticeably but not enormously better than I felt last week, so caution is certainly warranted.
I'll be walking again today, probably a little later in the day, as it's exceptionally hot in Detroit at the moment. I'll post again pretty soon with a little more depth, some pictures, thoughts, etc.
P.S. I want to take this opportunity to extend my thanks to Gladys Stebbins, my host in Detroit on the first stretch of my journey.
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.