It’s taken years for us to come to terms with the word ‘disability’ for our conditions. We both bore the ableist perception that disabled was a label to avoid. Luckily, our views have changed and knowing our physical and mental limitations has opened us to more kindness. Especially kindness from each other as our relationship enters another year.
What we can’t seem to agree on is how to speak to our own bodies about it.
When I was twenty, one of my lungs had a li’l menty b and collapsed. The records call it a spontaneous pneumothorax. Which is a lot of syllables to say it crapped out without obvious cause. I opted for surgery to prevent future incidents that would need re-hospitalization.
A team of very nice medical professionals knocked me out, cut me open, and stuck their tools into my chest cavity. Most importantly, they hosed the interior down in talc powder. This intentionally irritated the tissue and forced it to scar over aggressively, fusing my lung to the chest cavity. Can’t pop a lung if it’s always stuck in a semi-open position.
It was exactly as painful as you think and worse.
I now live with the after-effects of this physiological trauma. There’s nerve damage where the incisions were made. Half my chest is numb and doesn’t sweat at all because of that. The numbness? Great for tattoos. The broken thermostat? Less helpful. I start overheating at like 84°F. Not ideal on a planet that gets a bit warmer every year.
Still, the procedure worked. I won’t have any more major collapses (in that lung…). Instead, I live with persistent minor collapses. Not severe enough to need hospitalization, but they leave me slow and wheezing for weeks while healing.
It wasn’t easy to reach, but my answer to working through this is kindness and tenderness. A week in Intensive Care surrounded by people on the precipice. A year spent sleeping on the ‘wrong’ side while I recovered. A decade to accept that I can never safely hit the gym or jog again. I can’t have the strength of others around me, but I’m proud of my young body for what it’s endured.
My body is a brilliant construct that has earned every single breath. After feeling the air strangled out of me by my own lung, I can’t take anything for granted. I now meet my lung with the care it didn’t receive during childhood. Kind words. Clean air. Ample rest.
When it twinges, I take a seat without pressing the issue. I articulate my limits to those around me. I’ve learned never to place anything ahead of these needs. It’s not just about feeling unwell. If I push my hurt lung to meet a deadline or social obligation, I’m implying that my obligations are more valuable than breathing itself. I can’t let that pass.
My body has fought for every day it has on Earth and in return, I can only offer it unrestrained kindness. That’ll have to be enough.
I was diagnosed with endometriosis at 20-years-old, despite having lived with the related chronic pain since age 12. Long durations between first noticing symptoms and being diagnosed is unfortunately commonplace for this misunderstood condition. I know that receiving a diagnosis at all makes me one of the lucky ones, but I’ll be damned if you catch me acting lucky about any of this.
Here’s the gist of my endo: At any point, without warning or trigger, terrible pain rips through any of a number of parts of my body. There are lots of other annoying symptoms too (bloating, fatigue, and hot flashes) but the pain is what really gets my goat. Having to apologize to your lecturer so you can lie on the middle of the floor during a seminar kind of sucks. Canceling plans to stare at the ceiling and do breathing exercises sucks. Giving up in the middle of a workout session because you feel rhythmic stabbing in the abdomen, well, sucks.
So it sucks in so many ways, and I’m not going to act like some courageous warrior about it. In fact, I find that kind of narrative pretty alienating. I’m not brave, I’m angry. And I like to express that opinion — loudly and keenly for everyone in my vicinity.
When one of my internal organs starts acting up, I like to call it out. “Fucking kidney!” Summer will hear, looking over her shoulder to find me doubled over in pain, smacking myself repeatedly in the lower back. This is only partly because I like the idea of flagellating the offending body part; the sensation of (lightly) hitting myself where it hurts distracts from the pain. Summer tells me to be kind to her damaged lung. Sure, but I refer to my uterus — that most offensive organ of all — as “that bitch”. It’s my reproductive system. I’ll be sexist towards her if I want.
There are a myriad ways to manage chronic pain, and I have other weapons in my arsenal. Yoga, rest, and a handful of medications all pull their weight in my regimen. But blatant spite towards my lot in life is the cherry on top. I know anger and indignance will not change my condition, but they make me feel more human while I navigate it. I am not a naturally optimistic person, so expecting boundless positivity in the face of suffering feels like a slap in the face.
I begrudge no one — especially not my lovely girlfriend — for facing disabilities with tenderness, softness, or kindness. If that’s what helps and makes sense to them, that’s great. But to my fellow sarcastic, snarky bitches out there: never let anyone make you feel bad for confronting your struggles with all the irreverence you can muster. It’s your life, face it with contempt.
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Comments
While I fall somewhere between these poles—or maybe move back and forth between them based on the atmospheric, emotional, and bodily weather—I loooooove the representation for disability negativity Lucy is giving here! Not all acceptance looks peaceful all the time, and sometimes some good snark, anger, and spite towards my own disabled body is exactly what is needed. (Also sometimes sobbing.) Thank you both <3
Oh same, I can see you
Hell yeah, Prof. Queerno.
I’m personally pretty opposed to the older school of disability porn/inspiration rhetoric that used to go around. Partly because it infantilizes disabled people while placing a burden of boundless positivity and pride on us. When actually, impairments and disability are very complex interactions that rarely lead anywhere good. And the burden of caring for impaired people lies with everyone in society, ourselves included.
We need frank, negative outlets as much as we should try and make every day a useful endeavor.
I love articles like these with such a strong sense of author voice, and the contrasts here are great too. Thanks for sharing, and I wish us all a good “keep at it!”
Thanks v. much Triangle Cat <3
GF and I love being silly as much as you enjoy reading us.
I’m so glad of pieces like this. One of the biggest misconceptions is the idea that we can do “all the right things” medically and always get our desired outcome, but sometimes – often – that’s not our story, and it can be hard enough to come to terms with our own feelings about that without having to deal with other people’s. We’re living reminders of the inconvenient truth that the body isn’t a vending machine where predefined inputs will result in getting exactly what you want all of the time, and that’s too real for some people. I also really appreciate the acknowledgment of medical trauma here – sometimes the procedure goes right but it’s still hard living with the memories.