This was my journal entry today to the left. First drawing I’ve done in a week. Entirely in graphite. You can learn a lot about yourself, others, safety and trust in a few short days. Sometimes other people look at me and think that it’s easy living in this body, or that it’s easy being me, just because I am smart and knowledgeable, and have talents. It’s easy for them to miss the things that bombard people like me, since it doesn’t bombard them. That’s the thing about hidden disabilities, or when your disabilities render you nonverbal. Other people working with you may never realize how vulnerable they are, in ways that they can’t say, or even if they do, that others may not be able to understand. On the outside, I seem that I should just be like everyone else. I have two arms, two legs, etc. But nothing about me is like everyone else. The cost of being uber smart, for me, with my altered brain, is that super perception applies to unpleasant ones, too.
And then there is the damage from all the crap that crawled into my body after I was born, the stuff that I was born with, that now includes Ehlers-Danlos Syndrome. It’s why I can’t eat normally anymore, or offload the residuals, so to speak, it’s why I am losing my mobility and will have to start using protective bracing. It’s why operating on me is a hazardous thing (and should never have had my internal anatomy rearranged), and sutures can be a bad thing. It causes things like abdominal aortal aneurisms, prolapsed mitral valves that leak, skin to stretch too much and everything to make you bruise, even without taking NSAIDS or getting old or whatever. If I am careful, I can slow the damage, but can’t undo what’s done. I just have to be very very careful. But that’s all invisible for the most part to other people.
The week was really good, because I learned a lot about expectations, and what I need and should rely on myself, and the kindness of strangers and the indifference of strangers. When it overloads me too much, I gradually can become “non-verbal” too. This was my journal entry today (just the picture to the left.
When some people, including caring supportive professionals, see me reactive and trying to block the sensory stuff, and I need their help because I am out of my element and visiting their world, I am not sure they realize how vulnerable I am, stripped away from everything familiar that I use to keep myself balanced and safe and pain-free. I can’t take drugs for that. Maybe they just see another nut sometimes, because they can’t know how I’m affected by things.
When I don’t feel safe, eventually, I want to go to the safest place I can….almost feral if it’s bad enough. And find a tiny little place for this nut to crawl in and ride out the storm. I lost 5 whole pounds at Respite House, that I wasn’t actually planning to lose. They had no idea how to feed me, and I can’t tolerate so many foods. A million things that one might do in one’s house that would be devastating to me, like bleach and ammonia, might not even be especially noticed much by them. I have only mostly gotten my voice back today.
I don’t regret the week; it was very educational, even if distressing every day in many different ways. With one exception, I think that everyone had the best intentions and were very kind and compassionate and tried very hard to learn and help. Really really nice people. Now that I’ve been there, my “just in case” bag will probably look like I’m packing the house again, but that’s ok. At least I’ll know I have what I need—until they get used to what I need. I’m a “tough nut to crack” and it’s a learning curve for us all. Just remember, though—I’m the one who’s vulnerable when my tools are taken away and locked up, and someone else is in charge of keeping me safe and well. I can delegate that and have it be a respite when I can turn off my radar for a while. It’s why I rarely go out, and even in my own home, while most of it is as yet not habitable for me, they are working on that, and I can still hole up in my room and breathe. I just don’t want to have to live in my bubble forever. Not much else to like about being at Respite House yet, in terms of the environment physically, but it just needs some work to make it habitable for me, and work for them too.
Just remember that I can draw you a picture of how it feels to be on this side of the paradigm, and I can even give you words to help all you word-thinkers. But plenty of the guests don’t have the ability to tell you how things make them feel, or to draw you a picture, or maybe you don’t listen to them in exactly the same way that you have to listen to me. But they feel, too, and it can be hard when you don’t really know how some things affect them, because they can’t tell you or they don’t show it on the outside. And when I get too overloaded with sensory issues and chemical exposure and pain, I might not be able to be verbal either. Rather like asking me to calculate Pi when I’ve just been in a head on collision and went flying through the windshield. Oh wait. I can’t calculate Pi. I suck at math. 😉
Pretty Real Behind the Veil 