[If you haven’t read Part I, you probably should take a look.]
When I suddenly began to exhibit symptoms of erythromelalgia I was in my early forties, and it was just one of many mysterious and distressing things that were happening nearly simultaneously to me. I had hurt my back badly, with radiating sciatic pain into both legs. I had nerve injuries in both arms from the swimming that was supposed to help my back but didn’t. And then on top of that the puzzling hot and bright-red feet.
The doctors (and there were a series of them—orthopedists and neurosurgeons and neurologists in particular) suspected I might have a systemic disease because I had so many symmetrical symptoms in so many places, and so on top of everything else I was terrified that was the case when they started testing me for MS and a host of more obscure illnesses.
Fortunately, I didn’t have any disease, although it took several months of angst (my angst, that is) for them to come to that conclusion. The doctors concluded that I’d had a series of near-simultaneous injuries, several of which were expressed in burning pain, and one of which (the hot feet) was especially mysterious and rare.
This occurred in the early 1990s, before the internet was all that active. So I felt completely alone in this because I had no way to find other people with the problem, if such people existed. I didn’t even have a name for it. In addition, when I went for a consult with a big big back specialist on the west coast, he said he’d had patients with foot pain from their backs (of course), he’d never seen anyone with hot and burning feet. Visibly hot feet, I might add.
This further frightened me. If one of the biggest back specialists in the world had never seen it, what on earth was going on with me and why?
In those days there were also fewer medications for nerve pain, and since no one was offering me any relief, I located a behavioral psychologist specializing in chronic pain. This was also a relatively new field at the time. He had me listening to visualization tapes, including one that quickly became my favorite. I was supposed to relax different parts of my body till I was very mellow (not easy when you’re in that sort of pain) and then imagine a beautiful beach—waves, sand, warm weather, the works.
And then I was to visualize walking towards the ocean and stepping into the water—the cold, lovely water. I was supposed to imagine how this would feel. It was actually the middle of a New England winter, and this summertime fantasy was a pleasant thing to think about on several levels. But it was especially wonderful to think of those gentle waves lapping at my feet and cooling them off.
I listened to that tape every day for many months. And then the real summer arrived, and some friends from the west coast came to visit. One day while they were in town we decided to go to the beach. This would mark the first time I’d actually been to the ocean in the physical sense since I’d hurt myself, and I was excited at the thought. I was especially energized by the idea of really honestly and truly putting my feet into the cold water (the ocean is really cold in New England).
And so I did. The sand was not too hot, and the walk was not too long. But still, by the time I got to the water, I knew something was very very wrong. The abrasive sand had stirred up my nerve-damaged feet, and the water—although certainly very cold—had an almost knife-like quality that added to the burning pain rather than subtracting from it.
I stood there for a couple of minutes, waiting for the bad feelings to subside. They didn’t. And so I walked back to where we’d set up our chairs and towels, and I waited some more.
It felt like someone had turned up the dial on my feet and forgotten to turn it down. It was about two months before my feet went back to feeling the way they had before that day at the beach, which was hardly “normal” but at least was better than this.
Some time during those two months I took that beach visualization tape and threw it across the room. And then I put it in a drawer and never listened to it again. In fact, after that incident I had trouble doing any relaxation or visualization at all, although I tried it several times over the years. I felt betrayed, and even though I knew this was unreasonable, I couldn’t shake the feeling.
I knew that visualization is fantasy, and walking on the sand and actually putting your feet in the water is reality. The first was a mental exercise; the second a physical one. But I was angry. I was depressed. And I was frightened.
[To be continued in the grand finale, Part III.]