When I was in fifth or sixth grade, I went on a hiking trip up a hill with a bunch of kids in my class. On the way up, I tripped and hit my knee on a rock. It must have hurt, but I got back up pretty quickly and didn’t think much of it. I’m sure my knee throbbed with pain as I climbed, and I’m equally sure that my mind was far away from my body, focused on pushing myself up that hill, on seeming normal, on not doing a weak, entitled thing like stopping or slowing down.
In my memory the hill is very high. We spent a long time at the old fire tower at the top, I think.
On the way down, I noticed my knee and thigh felt strangely wet. I looked down: a large patch of my pants leg was dark with blood. Well, that’s odd.
I made my way over to the adult in charge. “Excuse me, I think I’m bleeding.” I gestured down at my leg.
They took a look, then let out a shocked laugh. “You don’t complain much, do you?”
No, I don’t.
The scar on my knee is still there now–small and smooth, not much like the raised Great Red Spot I remember it being when it first healed. It would be nice to say that the rest of me has recovered in the same way, that time has shrunk and smoothed the messes made by my lack of care with myself.
And it’s a little true.
I understand now that I’m allowed to say yes when people offer me things–I’m allowed to weigh the benefits for me against the costs to them. I remember, as a kid, refusing friends’ parents’ offers of food or water so many times, even when I was desperately thirsty. There’s a feeling of taking on an insurmountable debt–of having a red ledger balance always in the corner of my eye, glaring at me–that for a long time accompanied offers from almost anyone. It’s not about deciding that their needs outweigh mine: it’s about knowing with stone certainty that my needs are utterly insubstantial. I still sometimes have to remind myself that this isn’t so. If you offer me something and I pause and hmm for a second before lighting up with an “actually, yeah!”, it’s probably because I had to take a second to go “yes, I /am/ allowed to accept–now, do I actually want to?”
It can still be very hard for me to ask for things, too. I can do it, but often part of my brain ends up cycling through “was it okay? did I mess up? is it something that’s actually really difficult or stressful for them (right now)?” “no that was an okay thing to ask for, it’s probably not a big deal”, which usually results in me apologizing a lot and trying to make sure it’s understood that this isn’t a big deal, it’s just a minor preference. Which is sort of and sometimes true, and sort of and sometimes a gross lie, because I am still pretty terrible at realizing that my discomfort exists and can be avoided.
I understand better now that I don’t have to keep going if it hurts. I started cross-country in ninth grade, after growing tired of swimming–not least because, though I didn’t think much of it at the time, the freestyle and backstroke kicks made my ankles feel pretty bad. I joined the team excited and proud, powerful, better than some of the slower seniors. I don’t remember how my body progressed through indoor and outdoor track seasons that year, but by tenth grade, cross country runs made my knees and ankles ache, and my times were mediocre. I thought about seeing a doctor, but that would be weakness, excuses and self-indulgence. (My pain wasn’t really substantial the way other people’s was. Feeling okay wasn’t a big deal, just a minor preference. My body’s discomfort in a situation was a fact of life, an “eh, that’s how it is” issue, something to plow through rather than route around.) Instead, I followed my coach’s advice: held bags of ice to my joints after runs, and never took a season off. Even though my ankles and knees burned.
Coach always liked to talk about the way track improved you as a person, and my later years on the team as a captain and quasi-captain did give me a lot of experience trying to inspire and organize people. (Perhaps more honestly: badgering people to come to practices, then badgering them to come to meets.) And I made so many friends on track, and had many happy memories with them. That’s beside the point, though, because what Coach meant above all was this: track teaches you dedication, commitment, powering through your weakness and pain, dismissing discomfort. And in this way track degraded and warped me, because it taught me to idolize my disregard for myself. It’s taken me a long time to unlearn that lesson.
I understand above all, now, that I cannot survive like that any more. Track wore on my ankles and knees, and they didn’t get better in the years after high school. My jaw started hurting too, a few years ago. My elbows and wrists started hurting in the summer of 2013, my hands in the fall. The suddenness freaked me out, and I finally got a clue that something was wrong–that maybe other people weren’t just dealing better with the same kind of pains I’d had for so long. Like the back and neck pain that had been with me even before track.
Yeah, there’s a pattern here: my joints suck. I spent a large amount of last year bouncing between doctors who told me I was “way too young” for this kind of joint pain, which is about the worst thing you can tell someone who often isn’t sure his pain (pain when standing up! pain opening a bottle!) is worth complaining about. And getting lots of test results that showed no, I didn’t have X unlikely potential cause. I got some useful stuff done, particularly going to physical therapy, but I spent a lot of time being in pain and thinking about being in pain, and not doing enough physical or mental activity to feel better. I’m fairly certian
I’ve been a bit better lately, and I think I’ve figured out what the heck is up with my too-young-for-this body: a relatively mild form (type 2) of Ehlers-Danlos syndrome, a genetic condition that makes your connective tissue weaker but more flexible. EDS can lead to the connective tissue in your joints getting worn away, particularly if you do high-impact exercise like running. So your bones rub against your joints, leading to inflammation. (This is why my symptoms are pretty consistent with some types of arthritis, which also leads to joint inflammation but by way of autoimmune problems). But there’s no specific cure, although apparently vitamin C works wonders for some people. Just dealing with the symptoms via anti-inflammatory medicine, physical therapy, and low-impact exercise like swimming or stationary biking. No panacea, but all that’s a hell of a lot better than just hurting. And it is getting me better: good enough that I can do some things I’d like to do, good enough that I plan to go back to school in the spring. (Though god, am I scared of that.)
Lately I’ve been getting better at building good habits–stretching often, sleeping earlier, being a little productive, not hating myself for being useless. I’m climbing a very high hill, and I’m not so good at that any more, not on my own. I have to be smart about it. I still don’t like complaining, but whatever it is I’m doing now–explaining?–I think it’s important, and I think it helps. Like stretching, and slowing down. Like not hating myself. I hope you won’t be too impatient or distraught if I ask you to climb down from the heights you’ve reached, and walk with me a while, and let me lean on you.