Tattoos, Pain, And Incurable Illness
November 6, 2018 4:46 PM Subscribe
When you live with chronic pain, choosing when and where to experience pain can be a gift, and an act of control.
Selecting the pain meant it was not only bearable, but almost pleasurable. And, unlike the chronic pain from my rebellious meatcage, this hurt left me with a visible trophy to celebrate. Something about being able to run my fingers over the colorful artwork now permanently emblazoned across my skin felt like I’d come away a winner.By Ace Ratcliff.
I've got the same chronic illness as Ratcliff and this essay felt super familiar to me. My tattoos are ...difficult to cite... publications of my scientific research and they are definitely a control thing for me. The, similar though less severe, mobility impairment that my EDS gives me has kept me out of the lab and forced me towards the kinds of bioinformatics that dominate it. It was at least in someway an insistence that I could do neat things from a desk chair too and a way to claim ownership of this new path.
When I got it I was also in the middle of a pretty rapid and terrifying decline in my mobility, that has since thankfully at least levelled out, and it was definitely about death in that kind of way that is really about life. I was pretty keenly aware of how the tattoo really isn't going to be on me forever, and I guess what a pretty interesting branch of psychology calls 'mortality salient', while that absence of forever was pretty immediately relevant. The med student who eventually gets to really know me in the most intimate way conceivable will certainly be at least conversant in the visual language my tattoo is written in, and I'd bet may even appreciate it, but they will have other concerns as they disassemble me before the whole business gets either cremated or disposed of as medical waste - destroying it in a way that really is forever. What really struck me about tattoos isn't so much their permanence as their profound impermanence, displaying their message across a precisely human time scale.
Maybe it says something about my disposition, but I found this deeply comforting while I was stretched out on the back of a chair. I didn't need to worry about a making a design that would ring true forever, just one that would never ring false for the strangely relative amount of time while I still needed my rebellious skin. The idea of tattooing as something that simply scratches away the surface to openly display whats really under you, rather than keep it hidden, appeals to me. We do this constantly with other kinds of choices we make in life, almost especially the small ones that don't really affect us, and it almost seems strange not to take advantage of our ability to do it conspicuously with our skin. Its like it wasn't just about taking control of my meatcage, but also the finite amount of time it would carry me around.
posted by Blasdelb at 1:43 AM on November 7, 2018 [9 favorites]
When I got it I was also in the middle of a pretty rapid and terrifying decline in my mobility, that has since thankfully at least levelled out, and it was definitely about death in that kind of way that is really about life. I was pretty keenly aware of how the tattoo really isn't going to be on me forever, and I guess what a pretty interesting branch of psychology calls 'mortality salient', while that absence of forever was pretty immediately relevant. The med student who eventually gets to really know me in the most intimate way conceivable will certainly be at least conversant in the visual language my tattoo is written in, and I'd bet may even appreciate it, but they will have other concerns as they disassemble me before the whole business gets either cremated or disposed of as medical waste - destroying it in a way that really is forever. What really struck me about tattoos isn't so much their permanence as their profound impermanence, displaying their message across a precisely human time scale.
Maybe it says something about my disposition, but I found this deeply comforting while I was stretched out on the back of a chair. I didn't need to worry about a making a design that would ring true forever, just one that would never ring false for the strangely relative amount of time while I still needed my rebellious skin. The idea of tattooing as something that simply scratches away the surface to openly display whats really under you, rather than keep it hidden, appeals to me. We do this constantly with other kinds of choices we make in life, almost especially the small ones that don't really affect us, and it almost seems strange not to take advantage of our ability to do it conspicuously with our skin. Its like it wasn't just about taking control of my meatcage, but also the finite amount of time it would carry me around.
posted by Blasdelb at 1:43 AM on November 7, 2018 [9 favorites]
I've been getting tattooed since I was 20, a tattoo I wish I had done bigger (much bigger) and then several others. For me the point where it became about ownership of my body and making choices was after the cops shot me, writing abuse into my flesh. Since then I've been diagnosed with rheumatoid arthritis and a few other things, including (obviously) PTSD.
If my life is going to be written on my skin, and it is, I'm going to pick as much of what it says as I can.
posted by bile and syntax at 11:59 AM on November 7, 2018 [3 favorites]
If my life is going to be written on my skin, and it is, I'm going to pick as much of what it says as I can.
posted by bile and syntax at 11:59 AM on November 7, 2018 [3 favorites]
Jill Jones, a 34-year-old disabled woman from the San Francisco Bay Area, understands the idea of needing ownership over a body you no longer feel like you control
This. Very much this. I've been disabled since April of this year when I had a serious accident and nearly lost my right foot. I've been able to keep it so far but I have more surgeries next year at a minimum. I will spend the rest of my life with steel in my leg.
BOY HAVE I LEARNED A LOT about what disabled people have to deal with on a daily basis. I have a profound newfound appreciation for the difficulty that just simply existing is for a disabled person. I see things now in the world around me that I was previously completely oblivious to. Until I physically NEEDED a disabled parking spot, I didn't realize how many assholes use those spots without a real need or legal permission, because they know nobody's checking for that (nobody's checking for that, believe me). That's just one permutation, but they are Legion.
I've been planning to get my first tattoo this year. I wanted to get the hardware in my bad leg tattooed on the outside of my good leg to remind me not to do it to the other one. The Mrs. feels still too much in the throes of our new reality to deal with looking at that, so we agreed I'd hold off on that one. Instead I'm trying to finalize my design for my Mr. Rogers inspired tattoo.
I'll spend the second half of my life not having the same control of my body that I spent the first half of it wholeheartedly enjoying. So many of the sports I loved and crafted my life around I will never do again, and I'm still processing the grief of that in ways, I think. I'm excited for tattoos to be something that help me own my beautiful body for the brief temporal magic that it is.
Also I highly do NOT recommend letting them give you Ketamine in the hospital. Good God that was a worse trauma than the accident itself.
posted by allkindsoftime at 12:57 PM on November 7, 2018 [3 favorites]
This. Very much this. I've been disabled since April of this year when I had a serious accident and nearly lost my right foot. I've been able to keep it so far but I have more surgeries next year at a minimum. I will spend the rest of my life with steel in my leg.
BOY HAVE I LEARNED A LOT about what disabled people have to deal with on a daily basis. I have a profound newfound appreciation for the difficulty that just simply existing is for a disabled person. I see things now in the world around me that I was previously completely oblivious to. Until I physically NEEDED a disabled parking spot, I didn't realize how many assholes use those spots without a real need or legal permission, because they know nobody's checking for that (nobody's checking for that, believe me). That's just one permutation, but they are Legion.
I've been planning to get my first tattoo this year. I wanted to get the hardware in my bad leg tattooed on the outside of my good leg to remind me not to do it to the other one. The Mrs. feels still too much in the throes of our new reality to deal with looking at that, so we agreed I'd hold off on that one. Instead I'm trying to finalize my design for my Mr. Rogers inspired tattoo.
I'll spend the second half of my life not having the same control of my body that I spent the first half of it wholeheartedly enjoying. So many of the sports I loved and crafted my life around I will never do again, and I'm still processing the grief of that in ways, I think. I'm excited for tattoos to be something that help me own my beautiful body for the brief temporal magic that it is.
Also I highly do NOT recommend letting them give you Ketamine in the hospital. Good God that was a worse trauma than the accident itself.
posted by allkindsoftime at 12:57 PM on November 7, 2018 [3 favorites]
Huh, I've been reading Ace Ratcliff's other writing recently, but I missed this thread. Her other pieces are worth checking out too:
Ace Ratcliff on Huffpost
My Anger Is My Kindness
posted by homunculus at 2:08 PM on November 16, 2018
Ace Ratcliff on Huffpost
My Anger Is My Kindness
posted by homunculus at 2:08 PM on November 16, 2018
I've had the idea for my first tattoo long enough that I see it when I picture myself in my mind, and its absence looks wrong to me when I look at that part of my body. But I live in a rural area far from any good tattoo parlors, and I'm a walker-dependent cripple with chronic pain, so the amount of effort it would take to get it done has led me to put it off indefinitely. But someday I'll get it, I'm sure of that.
posted by homunculus at 3:03 PM on November 16, 2018
posted by homunculus at 3:03 PM on November 16, 2018
Living with chronic pain: Ehlers-Danlos syndrome
posted by homunculus at 3:07 PM on November 16, 2018
posted by homunculus at 3:07 PM on November 16, 2018
In other pain news: AMA: Patients Being Harmed by Rx Opioid Crackdown
posted by homunculus at 3:09 PM on November 16, 2018
posted by homunculus at 3:09 PM on November 16, 2018
Apparently some people with EDS find that kratom is effective for treating their pain:
How a Kratom Ban Will Create Health Risks and Suffering—and Fuel Terrorism
How a Kratom Ban Will Create Health Risks and Suffering—and Fuel Terrorism
Many of the millions of Americans who use kratom for chronic pain management greatly prefer it to conventional opioids. These people include my partner, Carolyn, who was previously prescribed Vicodin her for Ehlers-Danlos Syndrome (EDS), a disorder involving the body’s connective tissue. She finds that unlike hydrocodone, kratom attenuates her daily pain without making her lethargic.posted by homunculus at 1:53 PM on December 2, 2018
Carolyn purchases her products regularly from one of the nation’s most reputable vendors. If kratom is banned, she and millions of others may soon find that their safe, consistent supplement is hijacked by criminal enterprises, comes adulterated with substances that may range from unpleasant to deadly, and subjects them to legal risks.
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