The sun’s coming up in the distance. Gradually. The sky is getting pink, and small clouds are hovering over the horizon. Street lights glow orange, and the tail lights of cars blink on and off on the streets below. My room is on the “boring” side of the hotel on this trip, which is good. The “exciting” side is bright and loud and exhausting. This room is my refuge.
I had a great time with my relatives, last night. I have not seen one of them in 30 years, and I had never met their spouse. You can really tell we’re related. Our mannerisms and sense of humor are very similar, and we talk about the same kinds of things. It was also good to connect with real people who are not working at the convention. Real people. Who talk to you because they want to.
I managed to escape the drunken forays of my workmates last night. I went to dinner with my family, and they went their own way – dinner and drinking till all hours. I cannot do it. I cannot tolerate alcohol, and being sleep-deprived is a hazard for me. My whole system starts to degrade when I am overly tired, and I make bad decisions that get me in trouble. I say things I should not say. I get combative. I get off-balance and am in more risk of falling. I make stupid choices and make myself even more tired, which compounds my difficulties. I cannot afford to get in that kind of trouble – especially in a work situation. I have a spouse and a home to provide for, and I also need to keep myself safe.
That is something that people with no health challenges can understand. They can just run around and do whatever they like without repercussions. A playground like this is paradise for them, and they can let their hair down and run wild, staving off their fears of dying and getting old.
My life, unfortunately, is all about repercussions. But I cannot tell anyone, because if people find out that I have “issues”, they can be very unkind. And they can start avoiding me. That’s why I never tell anyone about my brain injuries. They just don’t get it, and this is difficult enough, without adding constant isolation to the mix.
Brain injury can be deeply isolating. People do not want to confront human limitations – especially when it comes to neuro stuff. They just don’t. So, I spare them the discomfort of disclosure, and we can all just live our lives. But that’s the double-bind. If I don’t tell people I need special consideration and assistance, I can never get it. But if I do tell them, I can lose my job. And don’t tell me it’s illegal to discriminate. Employers, bosses, whoever… will find other ways to exclude you, if you’re “not a good fit”.
I like having a job. I like having an income. I like not being homeless and living on the edge. And silence is the price-tag on that.
Muddling through. Battling back the demons. Dancing carefully on the razor’s edge. And never letting on, just what is happening with me.
All the lights and noise and busy-ness that energize others… they exhaust me. I’m on constant guard against the onslaught. All the excitement, the long hours, the rich food and drinking… they fry my system, and I can barely keep it together… then collapse at the end of it all. I get so depleted, that I am pretty worthless for weeks after. It’s the price I pay for keeping up with “normal” people, and it has been this way my entire brain-injured life.
So, I suck it up. Keep going. Just focus on this being over in a few days. Three days and counting. And I really only need to work part of that time. I just want it to be over. But in the meantime, I enjoy what I can. Focus on the positives. Take time to myself. Recharge as best I can. And sleep whenever possible.
Focus on the good, so I don’t overwhelm myself with negativity. Just stay the course and be grateful for what good I can find.