Sunday, September 21, 2008

On track

I never fail to underestimate the depths of humiliation that illness continually takes me.

A few weeks ago I was having what I thought was a Good Walking Day. A day when I didn't hesitantly shuffle along the pavement as if my ankles were attached to two giant filing cabinets. A day when I felt, if not normal, then perhaps passable for normal.

My mom was suppose to pick me up from acupuncture, but after a quick cell-phone call, I discovered I had mixed up the time I gave her (as my damaged brain is apt to do on occasion) and would have to wait an hour and a half for her to pick me up. Not only did I find the sitting on the corner of 33rd and Belmont -- amusing as it can be at times -- wholly unappealing, but it would mean I would miss my daily call from A. on a day when I was more keenly aware of his absence. Since it was a Good Walking Day, I decided I'd hop a bus home. The downside to that is that the closest bus stop to my apartment on the return ride is about four and half blocks away downhill (or uphill from the bus stop). As I began that last, uphill leg of my journey, I thought to myself, yes, indeed, this really was a Good Walking Day. That is, until a tiny white-haired old lady in a light blue dress whizzed past me on my left.

This last Friday afternoon I had acupuncture again and walked to the bus stop departing for my acupuncturist's office just a block and a half away (with the usual plan that my mom would pick me up afterward). Again, as I meandered along, I thought that my walking ability seemed, maybe not quite on the level of a Good Walking Day, but pretty damn decent. Yet before I reached the end of the block, I kid you not, a man on crutches passed me on the left.

Crutches? Are ya fucking kidding me? For the love of God, does the humiliation never end?

Yes, I know. I should shut my mouth now and be grateful I haven't lost my ability to use the toilet on my own.

It's funny, though, just how much my ability to walk is mediated by this illness. While there are the Good Walking Days when my gait is natural, if slightly deliberate (who am I kidding? I make great-grandmas look like Jamaican gold-medalists!), I have other days when I feel almost hemiplegic. I walk with a very distinct, if inexplicable limp on my right side, as if I were dragging it along like a heavy suitcase. And, of course, I always walk with a cane, Good Walking Day or no, though I suspect on those bad days I should probably be using a walker.

A study back in May suggested that perhaps gait characteristics could be used to monitor the disease process of ME/CFS. And when I went to look for that paper, I was surprised to find some studies back in the 1990s suggesting the same thing. All three studies insisted this suggested central nervous system pathology. But I suppose James Jones at our esteemed CDC would tell me that I just need to see a therapist and Peter White of the UK would tell me I just need work harder at walking.

Yet I couldn't help but thinking of my walking difficulties while I read this paper this afternoon that insisted ME/CFS was really caused by an enterovirus, the genus that contains the polio virus. While polio itself may have been eradicated, other forms of enterovirus have "filled the vacuum" its absence has created. I was particularly struck when the author, Dr. J. Irving Spur, mentioned labyrinthitis as a trigger, as getting that was the proverbial straw that broke the camel's back for me. Gait abnormalities are mentioned in a symptom catologue located in the appendix.

He, of course, is not the first to discuss enterovirus. Dr. John Chia began the year with a study finding an enterovirus in stomach biopsies of 83% of 165 ME/CFS patients and 20% of healthy controls. Much more suggestive than some of the early muscle biopsy studies of the 1990s.

Yes, there are all kinds of viruses linked to ME/CFS. And Chia or Spur need a lot more research to verify their work. And even if they are right, we have no way yet to treat an enterovirus. But, damn, I couldn't help but feel that they are on the right track.

You know, so that someday my feet will always stay on track and everyday will be a Good Walking Day. And when that day comes, those great-grandmas and guys on crutches will be eating my dust.