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.)