I had lunch with a group of friendly colleagues who I don’t see very often when we all attended a conference. One person asked me how my phantom pain was doing and then asked, “How can you feel your leg when it isn’t there anymore? Do doctors even know why your brain does that?” She added a slow, wondering head shake to express her astonishment at the peculiarity of my condition. “That’s just fascinating! I mean, wow!”
Not wow. Fascinating is not the word that comes to my mind. Off the top of my head, a more accurate term for phantom pain would be exhausting. Also frustrating, crazy-making, horrible. “Well,” I responded. “It would be fascinating, if only it didn’t hurt so much. I might find it more interesting without all the pain meds.”
As it is, I don’t find my pain very interesting at all. I try my darnedest to suppress this “fascinating” pain by taking a cocktail of pain drugs, all of which cause equally fascinating side effects, like dry mouth, constipation, and aphasia (can’t find the word I want, like tip-of-the-tongue sensation times 100). I “can’t tolerate” (translation: I vomit up almost immediately) go-to meds Percocet and Vicodin, so “break through pain” (translation: pain that isn’t stopped by my daily regimen of pills) must be endured until it’s late enough that I can take my evening dose of pain meds with a sleeping pill, the combination of which usually renders me sufficiently zoned to achieve sleep and escape my fascinating pain.
I guess I can see how—in the abstract—phantom pain evokes speculation and curiosity. It is weird that my body “feels” painful sensations in my absent foot and sometimes in my missing knee or calf. And researchers still don’t really know what causes phantom pain or how to cure it. But I don’t want to hear about how fascinating it is, as though my suffering were a curiosity or spectacle.
No one who suffers from chronic pain ever tells me that my phantom pain fascinates them, probably because they understand that chronic pain (of any type) is utterly mundane. That’s the worst part. Pain becomes part of the taken-for-granted daily lifeworld in which some of us learn to exist, knowing there is no escape. Pain is just there, and it’s hopefully not too awful most of the time, and we work around it the best we can.
I am one of the more fortunate ones; the vast majority of my pain is addressed most of the time by medications that I can tolerate. It hurts but I can live my life. It’s so much worse for those for whom no effective pain treatment can be found or whose meds stop working over time, or those whom the medical establishment does not believe actually experience pain.
Phantom pain—like all chronic pain—is not fascinating and it is not heroic. It serves no helpful purpose, and it signifies neither moral decay nor righteous martyrdom. Phantom pain is boring.
And for those of you who want to know if I have tried that mirror therapy for phantom pain that you heard about, the answer is yes. Ditto for reiki, massage, acupuncture, electrical stim, and biofeedback. They weren’t fascinating either, but the massage was enjoyable while it lasted.