Sunday, December 12, 2010

In My Shoes

Why don't I give them away? Theyre piled in a box in my closet, gathering dust.

Tap shoes saw hard use when I was young. Later, occasionally I
d dance for my own pleasure and my kids amusement.

Soft dance shoes. Last time I tried to go country dancing I felt strange after just two dances---so dizzy and weak I headed home with my head throbbing, thinking, “Drat, relapsed again.” Early on I thought getting exercise should help.

Hiking boots, near-new. A year into the illness, thinking I was well I returned to work in state parks. Each day was harder. Each night I came home in tears. After one month I had to leave the job I loved.

Office shoes share crate-space with flip-flops. When not at parks, I worked writing and editing from home. Juggling home-schooling my kids with researching and grantwriting, I could even work at the beach with my laptop.

Power shoes: second-hand, but the right look for that jeans-and-pumps Hollywood meeting I never got. When my screenplay made quarter-finals in the Zoetrope Contest, I thought I might need those shoes. Turned out I was too ill to shop the script around building on the contest momentum. Now I can neither research nor write anything lengthy: words swim. I listen to audio books, I rarely blog.

Water shoes. Ahh, kayaking. A leisurely paddle upriver was a favorite way to spend our day, my kids and I, spying on swallow colonies under bridges, sneaking up on herons in tall reeds.

Running shoes. At the height of my cross-country kick I ran track laps on weekday mornings and took to the trails on weekends, working up to a comfortable 10K.

Today I can't walk a mile, and my shoes are socks. Thick socks warm toes chilled by low circulation. Bright-colored socks cheer me. Plushy thigh-highs and cozy tights for snowy days.

My kids are ill too, so triple the doctor visits, snow boots over socks. After our home was foreclosed because I could no longer work, we had to move to a rugged, isolated area where we could afford rent. Trips to the doctor are treks through snowy mountain roads, so the socks had better be warm.

The importance of socks in our lives inspired my friend Siobhan and I to create Sock It To ME/cfs. We can
t march, but our socks can march for us, in public art displays like the AIDS quilt, each sufferer represented by a personalized sock.

We announced the project and opened the website,, and socks started coming in: knit, crocheted, denim with studs, sailcloth, leather. We hope to march garlands of them through the Washington Mall and to the WHO, and festoon meetings with their bold statements of the individuality of millions of sufferers. We hope this project will help raise awareness and funds for research and patient services. We hope. Edit: Sock project canceled due to illness.

Hopes are all we have. Hopes are what really fill that box in my closet. Hanging on to those shoes shows my trust in strides being made by researchers and steps now advancing toward treatment. Hanging on to them symbolizes my expectation that I’ll be well and walking---and dancing, hiking, kayaking, and working---in my shoes again.

(This is an edited version of my submission for the "In My Shoes" contest at a  resource for articles and networking in the ME community. Every now and then, I can write a little, straight from the heart. Editing what I wrote is very hard for me as it's nearly as hard for me to read my own words as to read someone else's. This contest's theme clicked with me. Sometimes I can write a little when I get inspired by a call to action. I rarely blog now because I can rarely write at all, but I will try to remember to copy here what I do manage to write.)


  1. Beautifully written. It made me think about my own closet full of neglected shoes and what they all represent. Thank you for this!

  2. Very nicely done! I just discovered you...and re-discovering sites. Been "off the scene" for years cuz very sick and rejoining the living. Well, you know; it's a relative thing. Love your shoe piece. I love to write,too. Some days I can write pages, so not a sentence. I'll try and look back in your blog about where to send a sock, like to be a part of that! Not sure if I'm in or how I got here. Sound familiar? In case I'm not signed into this par-tickler venue, I'm Monica, monk, in VA, I WAS a child psychiatrist. Got sick in 83, but worked till I 2000. So sorry your kids are sick. Washington mall...kayaking? what part of the world you in?

  3. This is a lovely peice, and really rings true for me, I have Fibromyalgia, and all the walking foot problems that go with it. I'm going to share it with the FM groups I run on FB so I hope thats ok. I no longer have a wardrobe full of shoes, its been to long, but I have about six pares of Croc's in a variety of cheerful colors one pare of boots with memory foam soles for the snow, but right at the back is a pair of rock boots I just cant bear to part with although so heavy I'm never likely to ware them again, silly aren't we! Try Croc's though I wouldn't be with out them sorted my foot pain in a couple of months... and no I don't work for Croc's :) Dxxx

  4. Loved the part about living in your socks! That is so true for me, although my faithful Dankso clogs have made it through the years with me. I find wool socks are the best, a little pricey but they really insulate those icy toes well. Even my mom's doc recommended them to her for Reynauds phenomena syndrome case. I have too many socks to count in a rainbow of colors and styles however I am always on the lookout for another "cute" pair! lol!
    Diana E.via facebook

  5. wow, Kassy you are such a great writer. that was amazing. it brought up so many thoughts. i looked at my storage bin filled with shoes the other day and thought the very same things. like Debbie, I usually only wear Crocs now. how fashionable! my everyday garb is what i call "rehab chic." what a life. at least we can all laugh and cry together.

    thanks for writing this great piece.

  6. It's my sailing kit that hangs in my wardrobe, unused since two years, the salopettes never worn at sea. I bought the best - secondhand from Ebay, just before I got sick - in anticipation of a busy sailing season.

    The old ones leaked like a sieve!

    And they wait, unused, holding the hope that one day, someday, I might be capable and get back out on the water.

  7. I just found your blog - thank you so much for sharing. I know how much energy it takes to write. Your piece on shoes made me cry; all of us out here in socks can identify!

  8. What a beautiful, and heartbreaking, and relateable post!

  9. How did I miss all these kind comments? I didn't read them til over a year later, somehow. Thank you all and please forgive me, and blame the brainfog, for not thanking you sooner.