I’ve been housebound this Winter. It’s given me a lot of time to think, and a lot of time to write. I write/talk about pain a lot, and for the most part, I feel like a lot of my pals don’t know how – or even if – to respond. Sometimes I find this frustrating, but the truth is, I don’t know how to respond either. But I have learned that I prefer it when someone can at least say, “I don’t know what to say,” instead of pretending that I didn’t say anything, not responding, not commenting, not even writing a little less than three heart so I know I haven’t totally disappeared. <3
Sometimes it’s enough to say, “That sucks,” than nothing at all.
I went outside, very briefly, three times in January. I collapsed in public again. I cry-laughed with my hands and knees against the concrete, cane by my side, tears smearing my glasses, and I wondered if there was a proper response I was supposed to have in this situation. Am I supposed to try to get up right away? Rest on the sidewalk? Assure everybody I’m okay when I don’t feel okay? Move out of the way so as not to disturb the non-disabled passersby? If I don’t know how to respond to my own pain, can I expect my friends to know?
Last Summer, the same thing happened. I wrote about it briefly in this entry, Making Spaces Accessible & Scent-Free to Create Opportunities for Friendship, Connection, & Support, but I will write about it again. I was trying to walk because I wanted to be in the sun, but my body wasn’t having it. I crossed a busy intersection, and just as I got both feet onto the sidewalk, a spasm in my tailbone shocked my spinal column and my pelvis, the joints locked, and I hit the ground.
Nobody talked to me for the half hour I sat on the sidewalk, cane by my side, eyes wide with fear. I counted more than sixty people walk by, and I watched a few hipsters take selfies with novelty beer bottles on the patio nearby, refusing to make eye contact, before somebody else entering the bar saw me and came over, asked if I needed help. My body was still mostly paralyzed. I couldn’t access transit and couldn’t afford a cab. The only thing I needed was a ride home, and for somebody to acknowledge the fact that sixty people had just pretended not to see me.
He had a car, and offered me a ride. He carried my backpack and let me lean against him to walk. Yes, being disabled and getting into a car alone with a strange man is a dangerous and vulnerable position to be in. Yes, it was Mercury Retrograde, and we got lost in a maze of one-way streets and dead-ends trying to avoid rush hour traffic. Yes, my phone was dying. Yes, white privilege is what afforded me the offer of a free ride home. Yes, I felt grateful and terrified at the same time. But the Talking Heads’ Psycho Killer was playing on the radio, which was strangely comforting, and I didn’t have any gut feelings of doom – it felt luxurious to be inside a car in the city, to not be fighting for a seat on transit, to not be sitting on the concrete, wondering how and when I would get home.
I haven’t fully recuperated from that experience, nor have I fully understood all the potential, and conflicting, meanings in such an experience, but still, it’s another story. It’s part of the trauma of my disability experience, to be in pain and stranded, to watch people ignore me, to hope that the one person offering help isn’t going to hurt me in the process.
Another common response when talking about pain is that of unsolicited advice. I understand the well-meaning intentions of this response, but it often causes more harm than help. Regardless of intention, giving unasked for advice to sick, disabled, &/or crazy people sends the message, I don’t think you’re trying hard enough, and I know your body and your mind better than you do. I know I have friends who are filled with all kinds of wisdom & ideas & skills, and when I want their advice, I’ll ask. I also know I have friends who don’t understand fibromyalgia and disability; I encourage them to listen.
Last week, when I fell again (and I have fallen multiple times before and after each of these incidents – they are not isolated or rare, and each fall holds a different meaning for me), I decided I would allow myself to cry, and I wouldn’t be angry at all the walking bodies around me. We were emerging from another Mercury Retrograde, and the lessons learned, the messages received, were starting to coalesce into a solid realization that I could carry with me:
Nobody is coming back here to return me to my home planet.
It might sound ridiculous, but this was a major revelation to me – it still is. I’ve always taken it for granted that I’m not-quite-human, that I don’t-belong-anywhere, but I hadn’t realized exactly how ingrained these beliefs were until this Winter. I’m still processing them.
One reason I’ve been drawing more lately is that I wanted to be able to point to the places that hurt. I have not had a pain-free day for more than half a decade, but when somebody asks me what hurts, where it hurts, how it hurts, I have extreme difficulty getting any words together. It just fucking hurts everywhere all the time leave me alone pay attention to me.
I talk about pain because I can’t not. Pain and illness are not the only things I want to talk about, but they do inform every thought word moment experience, so I must. I write about pain not only to connect with other disabled weirdos, to work toward the possibility of us feeling seen with all our complicated multitudes, but also (begrudgingly) to translate myself to pals who aren’t in pain, or are in different kinds of pain, and don’t quite get it – for me, it’s important to make sure us disabled queers and weirdos have writing and art that affirms our inherent worth & beauty & wholeness, but I do still get caught up in attempting to explain myself to non-disabled pals, because that’s the life I’ve got, and I need their support, too.
Although I have full body pain (diagnosis: fibromyalgia), as well as chronic migraines, headaches, MCS, IBS, and other stuff (my doctor has brought up endometriosis as yet another possibility, but for complicated reasons, I haven’t been able to get the necessary tests done yet), much of my physical pain is concentrated in my pelvis. In trying to describe this pain to multiple people, whether they were friends, family, or doctors, I realized, again and again, that I did not know the names of the parts that were hurting. So, I found myself wanting to learn about anatomy, and wanting to draw more.
I’ve learned the names of some of the parts that hurt. My sacroiliac joints, sacrum, coccyx, and hip joints are among the parts that are in excruciating pain at all times. This is the pain that means I can no longer take my ability to walk for granted. It’s the pain that means I can no longer carry groceries, travel, or stand up in the shower.
But it’s not just these joints that hurt. The other parts that hurt are: my spine, neck, and shoulders; my muscles, tendons, ligaments, and flesh; my arms, hands, wrists, and fingers; and my thighs, calves, ankles, and feet. And sometimes my ribcage.
Some of the activites that hurt my body are: walking, standing, sitting, lying down, sleeping, getting dressed or undressed, using pens and utensils and cups and dishes, preparing food, brushing my teeth, using my phone or computer…
I recognize that I’ve named just about every body part, and just about every crucial daily activity.
And I’m not trying to complain. I’m telling you that I am sick. I’m telling you that I might be sick forever. And I’m trying to be okay with being sick. I’m trying to be okay with not being returned to my home planet.
I still don’t know how to talk about pain. I’m experimenting with this conversation everyday.
P.S.: If you’ve benefited from my writing in any way – if my words have inspired you, helped you feel less alone, or sparked some weird feeling within you; if you’ve felt encouraged, or curious, or comforted – please consider compensating me by offering a donation of any amount. Whether you’ve been reading my writing for years, or just stumbled into me this afternoon, I invite you to help me sustain the process!