It is hard not to notice a girl with bright blue curls and five inch platform boots. That was by design, carefully crafted, an art project, every fabric layer saying I am an artist and if I’m not interesting, at least I’m trying to be.
When the circular rashes found their way to my scalp, I ignored them until they turned raw. Until they bled. Until the idea of painting bleach and colour over them made me shudder because the very act of parting my hair to peer at the nightmare of it hurt. I’d always been told one day I’d grow out of my costumes, but I never did. I ghosted out of them, slowly fading into the background, until the day I looked around realizing the only person I’d talked to beside my husband was Dr. Tom. The only place I’d been my house, my world becoming what I could wear with the least amount of rashes. The least amount of pain.
I can not think of not trying, until I’m confronted. I’m not sure why it’s generally physical therapists, but I have a theory. Physical therapists are sporty types. They like results.
I can’t give them results. I’m not getting better. I’m trying not to get worse.
I’d given up on platform boots. I didn’t trust my body to stay upright in them anymore. I’d purchased a pair of orthopedic shoes on the advice of a specialist. I’d put away my tulle skirts and donned the compression clothing to help my dysautonomia.
“The shoes will be good for stability, but they’re ugly…. Too bad they’re ugly.” the physical therapist shook their head sadly. They went on to insult the compression clothing, determining it to be ugly as well. Too bad.
Yeah. It is too bad. I didn’t choose any of it for aesthetics, so why make idle conversation which causes me to feel like shit? I already felt like shit, being recently diagnosed with incurable diseases and all that.
I’ve had a physical therapist recoil when my body dislocated in front of them. They were grossed out, and I felt gross because they avoided touching me. I’ve seen it in the mirror. I know it looks wrong.
Yet another physical therapist offered me the helpful opinion that they couldn’t bear to live my life, and then followed up with all the athletic pursuits they’d enjoyed over the weekend. Great. Thanks.
I read studies about people with my conditions offing themselves, and I think perhaps, and I could be wrong here, but maybe these attitudes don’t help.
There are two choices. I live, with pain and subjectively ugly braces and clothing and mobility aids and sometimes grumpiness and sometimes smears of happiness when I see the sky watercolour in the evening or I listen to yet another medical professional who sympathetically tells me that I am a burden because of my conditions- I listen to them very hard, and I take myself, and my burden and I off myself.
Which is ridiculous, because we are all burdens. Every single human being on the planet is a burden. I may have a diagnosis written down, a scope of burden, if you will.
But that does not diminish from someone else’s burden. Their need to be loved, to have their clothing washed. To be listened to. To be fed and to have a home. It’s unfair to point to the disabled and say you are the burden, the problem. If I took the burden of my being away from my small family, away from my husband, would he be better? Or would I leave behind pain and confusion? Would I merely shift my burden to someone else?
Burden needs reframed. It’s not even hard. I’ve heard the excuse that one needs to experience pain or disability or some great crisis to have empathy but Dr. Tom told me he hasn’t experienced pain like mine.
When he told me I was disabled, he pointed out all the amazing things disabled people do. I’m a writer. I know disabled people write, right? Right? He looked right at me, really looked, so I had to see, had to believe him. I have a problem with belief. With trust. But he believed it, so I could too.
When I walked into his office with my compression clothes for the first time, he gasped in excitement at my new mobility gear and told me it looked like something a superhero would wear. That it was cool, with all the built in KT tape. When I got silver ring splints for my hands, he admired them.
It comes down to something obvious.
He wasn’t an asshole.
He has a warm, curious personality that comes with laughter and doesn’t mind stuff that grosses out others, I guess.
Sometimes that must be an intentional choice. I know it is for me. I am a pessimist. I’m depressed. All the time. I make a choice to try not to be an asshole to people. To try to be empathetic. It doesn’t matter if it comes natural or if it is a choice. The results matter. Kindness matter. Actions are who you are.
I’ve seen it on #medtwitter, the frustration of medical professionals treating patients who have chronic illness with no cure. It depresses certain doctors. It makes them feel useless. They want to help, but there is no help.
They are wrong. There is help, it’s just not the same help as one can provide someone with a staph infection.
It’s kind of cooler though, it’s like using a subtle scalpel.
I’ve been asked what Dr. Tom does. He listens, really really listens. Then he acts. Or he doesn’t, if actions would make something worse. That’s where trust comes in. I don’t trust a lot. I trust him. That doesn’t mean I expect him to be right all of the time, or resolve every issue, but I know he tries all of the time. He isn’t giving me a cold glazed eyed stare.
Sometimes it is good to be able to tell someone, and that’s it. That’s the doctoring. I told him last week I can’t feel when I burn my hands. He can’t fix my nerves. I don’t expect him to. But he can write it down, and by doing that I am curbing my natural self destructive urges. I am now accountable to someone. If I show up burned, I went too far. I wasn’t watching my skin turn red. He’ll know that.
The burden of being will be observed by someone else, laughed over, discarded, treated, and I won’t take those words as seriously.
I’ve seen doctors on #medtwitter ask what difference diagnosis does without a cure.
My god. Are you serious.
Knowledge. That’s the first. Before Dr. Tom, I was told over and over again that I was simply mentally ill. Nineteen years of that.
Braces, physical therapy, diet, medication, disability, the ability to check yes to research my cells on labs… So that maybe one day for someone else, with kindness and science, there is a cure.
Did I mention knowledge?
Even if it is incomplete, it’s better than nothing. The burden of knowing is lighter than the burden of doubts and fear.
Burden is a loaded word, weaponized.
We can just not use it at any time. We can instead say “Wow! You look like a superhero!” or, explain how a medication works like my rheumatologist Dr. Macalester, and then say, “I feel optimistic; I’m not going anywhere.”