My Foot Stopped Working: What Chronic Pain Is Like

It strikes me that in some of my earlier neuropathy posts that I’ve neglected to inform people about my basic health. You know that I’m losing feel in my feet and legs, and sporadically lose the ability to move parts of them. Perhaps you don’t know why the numbness was so immediately apparent.

Since age 13, after some catastrophic medical malpractice, I’ve been in constant pain in every part of my body. It’s been so long that I don’t know how not hurting feels, except for this new alternative: not feeling anything at all. The first time that my toes irrevocably went off the grid, I was terribly frustrated. I’m used to navigating with them, and feeling the twinges of pain in their second-from-last joints as the curl, the bellwethers of how putting my foot down in each step will feel, and how sharp the pain will be in my arch and ankle.

Perhaps the best analogy is to remember the last time you had a really bad flu. That deep ache that settled on your flesh and in all your tissues, that made every movement a deliberate labor and reminded you of all those organs you take for granted. Sometimes one part, like my spinal column, hamstrings or kidneys will ache worse, and the chief pain can even be a means of focusing through the disorienting general pain. The worst is when the fog of pain is so great that I can no longer speak or compose full sentences. That general pain is so distracting, because the reports come from so many parts of the body, that my biggest daily problem can be thinking straight. This has been the last two decades of my life.

It's a little tragic that I miss the pain in my feet. I'm too used to it. The human mind is a remarkably adaptive thing, and at present I'm wondering if I could eventually adapt to not feeling anything at all, perhaps over a course of decades.

I learned to deal with chronic pain, since the alternatives were dying or getting hooked on morphine. I know I’m good at dealing with it because most people are surprised to learn there’s much wrong with me. Argue ableism and disableism all you want, but from my teens on, the ability to blend in with relatively healthy has been a source of pride. Often, also a source of protection. The kid who limps and props himself up against walls is a great target for beatings.

Finally seeing the neurologist on Friday. It's been a long month of no leads or answers. Feeling a bit hopeful today.