The Real Burden of Disability…

I didn’t actually forget why I left this place two years ago. I just get confused sometimes. I am resettled back into my my old life but it is nothing like my old life. It is the same house, but all of the junk is gone. The furniture is all used, second hand, salvage. There isn’t much of it. It is the same old place that has been in my family for generations but not even close to the same me.

I sat in this very room just a few years ago thinking thoughts that seem to belong to another person entirely now. But that’s why I left in the first place, isn’t it? To think new thoughts, in a new place, while doing new things, around new people. To be new.

But the things I wanted to leave behind followed.

Facts continue to exist no matter how much you deny them, and the fact is being disabled sucks. No matter what I do, I will never be whole again. If I ever was. PTSD sucks. Chronic pain sucks. Fibromyalgia sucks. Celiac disease sucks. Panic attacks suck. Agoraphobia sucks. I tried the whole rose colored glasses thing, but eventually you have to take them off. And the world around you is grayer than before.

Being a burden sucks.

Being disabled is more than just an inability to earn money. When you can’t survive on your own, you have to rely on other people to help you with the things you can’t do. If you can’t count on those people you have to learn to live without power, without heat, without plumbing, without food.

The worst part though, the thing that most contributed to my emotional decline was the judgment that comes with invisible disabilities. People can’t see it for themselves. They can’t feel what it feels like. So they make judgments based on their own experiences and abilities. They politicize you, preach at you, and make faces when you use food stamps to buy gluten free bread. They gross out when you explain that you have to shit in a bucket because you literally can’t afford indoor plumbing.

But even after all of that, you still feel like a burden.

Yes, disability has cost you jobs, it has also cost you romance, and friendships, and family relationships. It has also cost you trust, and independence, and freedom. Sometimes, it seems there is nothing in your life that disability doesn’t touch.

I have been waiting to hear from Disability for 3 years now, but they are in no rush.

While I was off trying to lose myself and survive, I saw some shit. I found that people there are not all that different than people here. No matter where I’ve been, my fears about the darkest parts of humanity have been confirmed. Please don’t misunderstand me, I am not saying that good is not there. I do my best to look for the good whatever it may be, but this is the very essence of PTSD, I can’t unsee what has been seen.

I never did outrun the pain. Though you must admit that it was a most valiant effort. Still, it stayed with me in Texas, it stayed with me in Washington State, and Oregon, and even in the San Luis Valley it remained. That heaviness followed me from desert to mountain, from ocean to valley and now once again back to the last place I thought I’d ever return to.

Because the heaviness lives inside of me. That’s just how it is. After 44.75 years I’ve come to accept this. I am different, and that’s okay. Those who love me will understand.

I’m glad to be home. Glad to be back among familiar places and back to the tiny world that I understand. I’m thankful to be bringing a good man back with me eventually. He’s a man I can count on, and in a world like this that is a very rare thing indeed.

I still long to travel, and perhaps someday I will. Maybe I won’t, that has surely changed. I’n not sure what my body and mind will and will not allow in the future. I’m not sure which dreams from before are possible and which are fairy tales.

I’m not one to believe in fairy tales. Not any more. I only know reality. Reality is a tough place, and if you can find even one person you can count on to survive with, you are blessed. A kind man, loving children, a most awesome grandmother, a few family members who still care.

These are good things. These are the important things in life.

I’m back on my home turf again, but it’s very different now. It’s what I know, and after what I’ve been through the past few years the familiarity is comforting. I still don’t leave my house more than once or twice a week, and even then it’s only for a short time. I’m not ready to be around people just yet, maybe I never really will be.

But I’m okay again. Okay is good.

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