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.


ruminating: 10 of Pentacles.

Suit: Pentacles
Up until about a year ago, I rarely had nice things to say about pentacles or the element of earth. It was either too mundane or too heavy or too slow. In the context of the society I grew up in (middle-class America), it was just too-emphasized in general. Who needed more materiality? And living with chronic pain, I was always avoiding the element of the body. The abstract, mental parts of my life were a sanctuary to me as a closeted, queerasfuck teenager because the pentacle parts felt like shackles.

Number: 10
Numerologically, 1 is the number of beginnings and 0 is of infinite possibilities. So 10 is a begin-again kind of number. Arthur Waite’s keyword for the tens was “fixing”. 10 is the chance to begin-again with experiential knowledge–knowledge is power. You may begin-again by taking the next step in front of you, or you may begin-again by taking a giant leap sideways, or you may decide to begin-again by launching straight up towards the clouds. Infinite possibilities with the power of conscious judgement.


The Waite-Smith version of the 10 of Pentacles features a busy marketplace, a familiar place, a normal place. But the pentacles on the card form a new way of seeing this place, a gateway to something more than a quotidian, capitalist, heteronormative life. This card shows you the new in the old, the fresh in the stale, the fairies in the forest, the magic in the mundane.

Through this card’s lens, I see humanity as more than a binary system and how every person embodies the masculine & the feminine. I see that life can be about more than how much money I have or how many things I possess. That 0 tells me not to find a role but to make one, to queer ‘roles’ altogether.

Not all leaps need to be profoundly original or pre-approved. Just go outside and listen to the birds. There’s magic there. And if you feeling like singing back, sing back. There’s magic there too.

perfectionists have empty blogs

I’ve wanted this space, this blog, for ages. I’ve dreamt about it so much that I’m now afraid of ruining it. So: if I don’t post anything, I can’t technically fail! That’s been my logic up til recently. Well, change has arrived: it’s time to get ugly. Beauty doesn’t come out of nothingness, it’s got to be ugly first.

Even when Earth was growing and evolving and blossoming into the super fine planet it is today, for a long while it was just covered in greens (after the long while of nothingness, obviously). Maybe you wouldn’t call it ‘ugly’ but it was generally a monotone canvas, nothing too fancy. It took millions of years for flowering plants to evolve. Earth first had to figure out what worked and what didn’t. She had to work with her audience, mostly insects at the time, and finally after millennia of hard work, she became the beautiful color-rich planet we know her to be today.

I’m not ready to flower. I’ve got to grow some grass first, plant some trees, coax some ivy. I need to put words here, love here, even if it isn’t perfect, even if it doesn’t quite look how I want it to look or do quite what I want it to do. First, I guess I need to tend to my own. And I need to do it here.