
Annie, Janet, Sharon, me, and Susie. I’d chopped my hair off this spring to play Rosalind in _As You Like It_.
I always wanted to have great legs.
The picture at right is of my mom (center), her sisters, and me, in 1993. As you can see, my mom has great legs. Her three sisters have great legs. Their older brother probably has great legs too. (I’ve never thought to check.)
I, however, from adolescence on, was perpetually unhappy with mine – my thighs in particular. My mom’s were slender. Mine were not.

Mom and me on the way to California in August 2003. Mingus is sitting unhappily in that carrier I’m cradling. This was a running-20-miles-a-week figure for me.
Mostly with that as my motivation, I was from the late 80s to 2004 a yo-yo dieter, registering every weight from 117 lbs. to about 145 lbs. at least twice, and more often oscillating from the high 120s to the high 130s. It seemed like I’d gain a pound if I so much as looked at a brownie. I had to battle mightily to keep the scale steady. In 2002, I bought a treadmill, and that made it possible to consistently get the amount of exercise in I had to do to keep at the weight I wanted to be, which was the mid-120s.
No matter what the scale said, though, I was never happy with my legs. Even at my thinnest, I just didn’t like their proportion to the rest of my body. Shopping for pants was something I was only able to deal with infrequently and with a major emotional girding of the loins. (Sorry.) And swimsuits? Forget it. I favored grandmotherly skirted styles, and then boyshorts, when they came into fashion. I think it’s fair to say I had a complex about my thighs.

October 2003, out in front of our apartment in California. I weigh about 128 lbs. here. This is one of the last pictures I have of me well.
And then I got sick.
I had been running three to five miles a day to keep my weight under control, and I was immediately unable to exercise at all. But strangely, six months into the illness, without dieting or exercise, I’d dropped from 128 lbs. to 118 lbs. (Doesn’t that sound like a too-good-to-be-true fad diet plan? Get sick! Lose weight! No dieting or exercise!) 118 lbs., for me, was a running-thirty-miles-a-week-and-eating-nothing-but-carrots weight. I’d never lost weight without trying – and now it was falling off me.
I had to buy all new clothes. I was swimming in my pants, and all my shirts’ shoulder seams had begun to creep down my arms. I remember standing in a dressing room at Banana Republic, realizing that all the sizes I’d pulled from the racks were too big. I asked a salesperson to bring me smaller ones, and she remarked how lucky I was to have such a problem.
I started hearing that a lot. “Lucky you, I bet you can wear anything.” “Lucky you, you’re so skinny.” I didn’t feel lucky. The one upside of developing a 24-inch waist was that I was able to buy a lot of beautiful vintage clothing that nobody else could fit into. My pals at one retro emprorium even started putting everything my size that came in on a dedicated rack for me.

November 2004. Six months in, ten pounds down. Remember these jeans styled with a belt sander? Good times.
With the change in my figure, I suddenly had a window on an experience that was entirely new to me. When you’re an average size, nobody really notices or remarks upon your averageness. When you’re really skinny, you become an object of curiosity and comment, and there’s this whole set of assumptions that people make about you. People think you must not eat very much. That you must have amazing self-discipline. That you’re thin because you stick to a diet plan in a way that few people are able to. That you’re thin because you’re doing things “right.” And worst of all, that you’re somehow more virtuous and “better” than people who weigh more than you do. And none of those things were any truer of me than they had been before I became suddenly thin.
I realized that before I got so thin, I was guilty of believing every one of those things about thin people. Sometimes, when people would launch into the litany of my amazingness based on my body shape, I’d try to tell them I hadn’t always been so thin, that I was sick, that nobody could figure out what was wrong with me, that I couldn’t seem to keep any weight on, no matter what I ate, that I would take every pound back and more if I could be well again. It rarely registered – I once had somebody say, “I wish I could get sick and lose weight!” I pretty quickly stopped trying to explain myself, and just let what felt like ill-gotten compliments be heaped upon me.

May 2005: 116 lbs. These are the same pair of 7 for All Mankind A-pockets as in the October 2003 picture above. right. As you can see, at this point, I could pull them off without unzipping them.
So why did the weight fall off? I think there are a few possibilities. There are people who think ME/CFS has an enteroviral connection. I think that’s possible. I did get something that like food poisoning back in Chicago in 2004 and very shortly after that, the whole thing kicked into high gear.
I think that that, or some other mechanism, altered my gut microflora when I fell ill, reducing the efficiency of my body’s processing and absorption of calories, and that’s why I started losing weight, despite increasing my caloric intake. I guess beforehand my body must have been ruthlessly efficient in that respect. It always felt that way.
There was a point in the fall of 2007, when I was getting precipitously worse, when my system just did away with digestion entirely and started passing food through virtually unchanged (sorry). I began losing weight even faster and was quickly down to 107 lbs., a weight I’d last registered around age 11 or 12. My doctor at the time started me on betaine, which helped replace the stomach acid I wasn’t making, and later Dr. Cheney recommended I take pancreatic enzymes (PDF), because I wasn’t making those either. Both supplements helped stem further loss, so I think that indicates both things were, indeed, a problem.
The other strange thing that happened, which might have contributed to the loss, was that my attitude toward food totally changed. I had always really, really loved food – I mean, I loved it so much that I made it my career. I was the type of person who was always thinking of what I was going to eat next, and when I could eat it, and I definitely struggled with my appetite.
Before I fell ill, if there was food in front of me – like chips or bread at a restaurant – I couldn’t seem to not eat it. My always-slender mother could do that, and I never could understand how it was possible. But when I got sick, all of that appetite melted away in the strangest way. I stopped thinking about food so much. I could pass up a slice of cake, or push the chips away. I remember, years after I fell ill, watching Chimp’s and my wedding video. I recall seeing how much I was clearly enjoying attacking a piece of cake – and I hardly even recognized that person. I just didn’t care about food in the same way any longer. It was an enormous and strange personality change to experience. What did that? I still don’t understand it, but it seemed like something must have been different about my gut, my brain, or maybe both.

Taken by Chimp, June 2011.
Once I became truly bedridden at the end of 2007, my body changed still further. Unable to walk, my muscles really started wasting. I also lost my very defined waist, which had always been a point of pride. For a while after I became bedridden, I tried to keep my weight up, but eventually I realized I was replacing muscle weight with fat weight, and so I’ve let it fall as it will.
At this point, I weigh about 111 lbs. Even at my present weight, I could stand to lose some of the fat I’ve gained around my middle. I hope to do that if I ever get well enough to really walk again. And at right is the current state of my legs. They are quite thin from muscle atrophy – and because of this, I’ve learned something about what made those thighs that I hated for so many years look the way they were.
They weren’t fat – they were muscular.