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.


Jigsaw Analogy said...

Weird. I'd thought my limp was a result of having been hit by a car in my 20s... makes me wonder.

The positive side of this, so far as I'm concerned, is that you're having some good days! YAY!

Also that Portlanders are way more courteous than New Yorkers. Here, I'm lucky if they don't push me out of their way, or jam into me with their walkers. (The number of people who push me out of their way to get to the last seat on the train is truly appalling. I am unable to believe that *that* many New Yorkers have invisible disabilities. And then they glare when I bump into them while struggling to keep my balance....)

Anonymous said...

It's relative isn't it ... A Good Walking Day is still a good walking day even if compared to grandma it's not so fabulous.

Good on you for striding out when you can at your pace and in your own style ;o)

Cusp said...

I reckon Rachel is right is all relative but on the other hand, when you feel you're having a 'good' day and someone with a Zimmer passes you it is disheartening. I well remember one day about a year into my illness. I had managed to walk to the bottom of our garden and feel relatively OK. The sun was shining and the birds singing. I was optimistic for the first time in months...and then our 82 year old neoghbour sped past in his garden poushing his lawnmower and my hear sank 'This just isn't bl**y right' (much as I love the old fella)

In the end we all do the best we can when we can amd you have to han don to yoru achievements. You can't measure yourself aginast other people, other people with disabilities, problems of age of PWME. You're you and you're doin the best you can and keeping your wit and intelligence.

Let'em pass. Give'em a wave and a smile and then know, tortoise or hare you both get to the same finish line.

Cusp said...

There’s an award waiting for you at


Sue Jackson said...

So glad to hear you've had some Good Walking Days recently and are getting out a bit (even if it's to health care appointments!). I love this fall weather and find that just being outdoors can really lift my spirits. You did a great job of describing that indescribable feeling when your feet feel too heavy to move. I know I am very, very fortunate that those days are the rare ones for me and I am able to walk more now, but I certainly can relate to your feelings.

I am also optimistic about some of the recent research findings. There are still the occasional studies about how CFS is different from depression (duh) or other useless drivel, but there is much more REAL science going on in CFS research these days. It gives me hope for a better future for my kids.


Michelle said...

Man I suck at replying to comments in a timely fashion. ;-)

First off, just let me note that this post sounded a lot more grim than I intended. I wrote it with a sort of sarcastic melodrama in mind and instead I think just the melodrama came across. While it was annoying that great-grannies and injured men were passing me by on the street, there's a certain rueful humor to it as well.

JA -- Yeah, I always thought my limp came from breaking my ankle when I was a kid, though I was always surprised how it was so dependent on my state of fatigue. These studies have definitely made me look at it a whole new way.

Oh and part of the reason I started using a cane -- in addition to my limp growing more profound -- was to give some sort of outward sign that I was disabled. Not that New Yorkers would pay all that much attention, I imagine. ;-)

Rachel -- Oh, very true. Good Walking Days are always good and I'll take all of 'em I can get!

Cusp -- Thanks for the award!

Yes, I think this disease is particularly hard on those of us who are hopelessly competitive. It's been very hard for me to quit comparing myself to others as my life before illness was all about beating everybody around me. But, I'm learning... ;-)

Sue -- We're just finishing up with the last bit of summer here with the rain arriving. Today really started to look like Fall when I noticed the sidewalk across the street littered with leaves. Though, that brings out one of my nemeses: leaf-blowers. Oh how I hate them!

And there is some great research coming out. Though in writing this post and finding those studies from the nineties, it was a little disheartening to see that there was some great stuff coming out then too and we're only just now repeating them. Yet there is new stuff that is very exciting. I think the Snell "test-retest" studies are some of the most promising in terms of demonstrating disability. And this enterovirus track looks very promising.