hasbulla

Randomly encountered a meme introducing me to this #hasbulla character recently. He has untreated growth hormone deficiency. He's typical of someone whose system produces none whatsoever. Like mine. I'm not sure people understand when I say that I'd be smaller, if I hadn't been treated. It's pretty rare, and this is what it looks like. 

Hasbulla is 19 years old. Too old to be treated for it at all, as growth plates close during adolescence. It's an illness where we have a brief window within which to refuse to accept the condition. A window which occurs when we're young, so it's really up the parents to figure out if they even have the means to treat it. Some can't afford it, some procrastinate or give up even trying to figure it out.

In many situations, treatment wouldn't be an option. Where it is, it can require extensive fights with insurance companies and the like. My doctor didn't even want to bother testing me, because the condition is so rare. He would have waited until it was too late. Hasbulla looks happy though, and that's what matters, right? No, fuck off with that shit.

I'm reminded of how people treated me in middle school, being new to Jersey, trying to find my place there. They thought my condition was cute and funny and I could have played into that, but I didn't want to be anyone's clown. Worse than dwarfism, people can't help but perceive those with this condition as essentially children. I wasn't bullied. I was liked for the wrong reasons in the wrong ways, and that was even worse. Even most children hate being treated like children. Imagine being treated that way all the time by peers.

Does this sound strange or irrational? To be liked can mean many things. We like and dislike each other on all different levels. We're quick to tell someone in doubt, don't worry, you're not outright offensive, but this is hardly what we're looking to hear. To be wanted or needed by others is to be valued. Those who humbly accept their handicapped social status can be more pleasant. That's an easier way to attain some sense of value, but I valued myself too much for it. 

Now, I'm not so sure. What is self-esteem but an estimate of how others will value us? Whatever attributes or potential we have only matters in so much that anyone else cares. For most of my life, I imagined there are people like me out there somewhere, and surely, they would like me. It seems engaging with humanity has exposed the absurdity of that. Of course it would be nice if neurotypicals liked me more.

I'm very fortunate that I was able to get treated young, eventually almost attaining maturity. Frustrating to fall a little short, but all things being relative. I was so close to living a life of dysfunction on a whole other scale. It's as if I've always been torn between normalcy and that untreated possibility of what I could have been. What I was for a few years there. A little kid, never growing up, just getting older.

That's still me, in some sense, as if I've never quite been able to get away from it. Maybe because of those years before I started catching up to my peers. I looked pathologically young for most of my childhood, as I grew my sense of self. Maybe it's physiological, in that I still don't have a pituitary, I've still got a serious disorder. I've grown, but it's highly unclear how much else the hypopituitarism impacts.

It's intertwined, in that the way the physiology manifests depends on the sorts of experiences we have. The sorts of experiences we have has a lot to do with our physiology.