RA Diaries: But you’re so young!

I’m standing chest-deep in warm water. My left leg is forward, and bent at the knee. This is helping stretch my right calf, which often gets swollen since the surgery.

The exercise feels good, and so does the water.

This is my first session of water therapy, and the first time I’ve been in a pool in months. It’s not a big pool, about 18 by 8 feet. It’s pretty deep, though — almost five feet.

I’m not alone in the pool. The physical therapist, Anne, is there, as is another patient, Jack. Jack is probably in his 80s. Anne may be in her mid-50s. We’re supposed to be sharing Anne’s services, but Jack is getting the bulk of her attention. I’m not sure why, but I get the distinct impression from Anne that he is one of those patients who won’t do the work unless bullied. As the “good” patient, I can just be set exercises and then left alone to do them.

I’m trying not to resent this, particularly since Jack is also a Medicare patient (he and Anne were discussing this before starting), and therefore likely only paying a fraction of what I’m paying. This recent medical foray has taken a huge bite out of my nest egg, and increased insurance rates this year mean even more money for less care.

But the warm water is still soothing, and Anne comes over to set me another exercise. As I’m doing it, another patient arrives. She is in a wheelchair, and she is not alone. There are at least two other women with her.

I wonder how she will be getting into the pool. It is not exactly wheelchair-friendly, with a long flight of steps up to the pool deck, then another flight down into the pool. My balance is much better these days, but I still held onto the railing going up and down. The last thing I need is to fall.

My question is answered a few minutes later, when the woman is seated in a sling, and hoisted into the pool. Well actually, she’s really a girl — she can’t be more than 15 or 16. I wonder why she is in a chair, and I catch a glimpse of a large scar on her leg as she is lowered in. Car accident?

But I don’t want to stare, or get in her way, and it’s not my business anyway, so I’ve moved to the opposite end of the pool, where Anne has assigned me bicycle kicks. Jack, however, has no such reservations. He stays in her end of the pool, not exactly getting in the way, but close. Anne helps her off the sling, and the girl grabs the bar running just below the pool’s edge. Even in that buoyant environment, it’s clear standing is a real struggle.

“Must be nice to get a ride, huh?” Jack is still staring at her, though he is supposed to be stretching.

“No it isn’t!” the girl snaps. “At least you can walk. I wish I could!”

Everything suddenly goes very still, and while the water temperature hasn’t fallen, it feels like it should have. But my first inclination, as I pump away at my imaginary bike, is to cheer, then go over and give her a high five.

Now, I’m not one to advocate rudeness to my elders. For that matter, I’m not one to advocate rudeness to anyone. But I also dealt with people like Jack quite a few times when I was a kid, then a teen — well-meaning adults, often senior citizens, who can’t handle the fact that a young person has a disability, and deal with it either with ham-fisted cheer, incredulity or patronization.

“But you’re so young!”

“What a shame!” (Often accompanied by clucking noises.)

“Awww!” (This has to be the worst.)

And while I never bit their heads off, like this girl did with Jack, I always wanted to. That defiance was always in me, that “fuck you for pitying me, you asshole” feeling, because although I was not averse to self-pity — particularly on those days when I was dealing with a lot of pain, or unable to do something most people find simple — no one likes to be pitied.

Pity also seems to make people blind to boundaries, like privacy. It’s like if you feel sorry for someone, they owe you something, whether it’s time or information, and they’re ungrateful jerks for not giving it to you.

To Jack’s credit, he mumbled an apology soon after. Perhaps he suddenly remembered what it was to be young and self-conscious and powerless. Or perhaps he related to the fact that, at a certain age, people start infantilizing you and feeling sorry for you just because you’re old.

And I could tell the girl felt guilty for snapping, because she told Anne she was having a really bad day. She didn’t apologize outright, though, and I’m glad, because it’s tough enough being a teenage girl. As women, we’re socialized to always defer to people, to be nice, particularly to men and boys, even if they’re not nice to us. Add a visible disability, and it’s like you have to apologize just for existing.

My next session in the pool is in three days. It’s at a different time, so I don’t know if I’ll see Jack or the girl. But if I do see her, and we make eye-contact, I will smile and nod. I may even say hi. Then I will enjoy the warm water, and the weightlessness that comes with it. I hope she can too.

All text copyrighted by A.K. Whitney, and cannot be used without permission.