Chronicles of Pain: the need for a name

This column is about my personal experiences with chronic pain/illness, but it’s not actually going to be in chronological order. Some information may not make sense until I get around to other things. Like, I should probably describe all of my pains & symptoms up front, but no, I’m not ready to do that. And I don’t want to try to plot out all the doctors and procedures and medications. Ugh, no. I’m just going to write about whatever comes to me when it comes to me.. or else I won’t write it at all. And I’m tired of not doing that. Somehow, not talking/writing about it has just made me really tired. I will now proceed to slowly wake up..

I have chronic pain. I have had chronic pain since I was at least 9, so about 15 years now. I don’t think I ever extensively wrote about my migraines [or other symptoms] as a teenager. Being in pain was baseline, was normal; there was no need to beat a dead horse by noting it in my journal.

I honestly couldn’t see how it influenced my energy levels, moods, reactions, decisions, perspectives. It was a part of my daily existence; it was a lens I could not remove or see around; it was a part of my being. I had no name for my pains and no way to understand its effects as separate from myself.

As a teenager, every time I was finally graced with the presence of a neurologist, I silently prayed & pleaded that some disease or disorder would finally grace me with its awe-some authenticating powers. I wanted that almost more than a cure. I got “used to” the pain and pretty much lost hope ever parting with it. What I couldn’t get used to, however, was explaining why I can’t do this or why I reacted like that. Without a name for my illness, I was just a freak or a bitch.

After three neurologists ignored the twitching altogether (my only visible/obvious symptom), a fourth finally sent me home with a word: myoclonus. I have myoclonus. She even gave me a pamphlet. I must’ve been at least 16, because I remember driving myself home while plotting my research approach and repeatedly thinking to myself, I have myoclonus.

My hopes for hours of intense, enlightening research were dashed within five minutes. Myoclonus: “irregular involuntary contraction of a muscle usually resulting from functional disorder of controlling motor neurons.” It’s.. It’s a fucking umbrella term for all involuntary muscles spasms! So it was a category term, not a specific term. And it was to label a symptom, not the whole condition.

Gasping for information like a fish out of water, I remembered the pamphlet. But she gave me a pamphlet! It offered no relief. It was about epilepsy and what to do when someone has a seizure, because that’s the most common manifestation of myoclonus. I do not have epilepsy. I cried myself to sleep that night.