For a while now I’ve been really tired. I don’t know how else to explain it. I am just so very tired. I feel like my throat is dried and my voice is hoarse, I feel like my body is heavier than it should be and my fingers move more slowly than ever before while writing these words. I am tired. I feel like I am wandering an endless wasteland, just sand and dirt under my feet as I drag myself forward.
This post isn’t going to be very optimistic, even though I generally want to be optimistic. It is simply going to be about how I feel right now.
You see, one of the things that happen to people like me, those of us who are in some way different from the norm, is that others pass judgment on us based on papers some random people write about us – often based on merely a few hours of conversation.
Those papers based on strangers asking questions, often questions from a list of standardised ones, can determine our future. If we meet someone who for some reason doesn’t like us, they may give us an unfair evaluation. We can complain, but sometimes even our most painful and heartfelt complaints won’t matter in the long run. Someone else will take their place and pass their judgement – sometimes based on the very papers we complained about.
Occasionally I have come across people who seem like they truly want to help me and those like me. When I do, I feel so grateful I cry. Even just thinking about those people now makes me cry. There are so few people out there who genuinely seem to care, meeting one is like meeting an angel.
The other problem with those papers they make others – specialists, they are called – fill out is that it feels like there can never be enough papers. If I have one piece of paper saying one thing, then they will tell me now things are going to be different… only to tell me later that I need some special paper with some specific information written on it. When I ask why, since they already have that very specific piece of information written down once, they give me some odd and barely logical explanation as to why it doesn’t count.
Then, I go out and get someone else to judge me and evaluate my needs, because obviously I could never know such information myself. No, no. I am not capable of understanding what would make my life easier.
Once I have this new paper, then soon I get asked for another… and another… and it continues.
It is like searching for the holy grail of papers – if only I can get this one magical paper, then I get to live.
I have been tested, evaluated, questioned and judged continuously since the day I walked into my doctor’s office asking to be diagnosed for Autism Spectrum Disorder. It has been years and no matter how many tests and questionnaires I answer, it never ends. Or at least, it hasn’t ended so far.
What is the real issue here?
Let me tell you.
I have done too much in my life. I have been working since I was 16 and even though I could never hold on to a job for long, I always found another. I have a long list of jobs and volunteer work behind me, but even worse, I have a bachelor’s degree in Japanese studies and a masters in Asian studies. I speak more languages than merely my native tongue, I have lived and studied abroad for years, I have never received support while doing any of it and yet I am still here.
They, and when I say they I mean everyone who say they want to help me, judge me on a few pieces of paper – the most horrifying of all papers – my resumé.
Yes, I think you might call me dramatic, and I suppose I am. What you might not yet understand is that others believe my resumé to be list of the skills and things I can do. In reality, nothing on that list has left me unscathed. I have been broken over and over again. I have done so many things, not because I functioned well, but because I was not functioning at all. I was depressed and afraid and fought to survive. I had more meltdowns and breaks than I can ever describe, more pain in my soul than I ever want to remember.
Every job I ever had, I failed. I can’t feel myself and my body like others do, so I force myself beyond my limits and hope that this time it might be different. Something has to be different. I will know when I can’t do something, I can protect myself… But I never could.
I didn’t get through university easily, I fought tooth and nail and quit several times over the years. I made it through, not because I could, but because I refused to stop.
Many won’t understand that, I’m sure, and that’s okay too.
All of these things, my life itself, led to my final big breakdown. I thought, back then, that it was the end. I would never willingly allow myself to go so far beyond what I am capable of. Never again would I suffer in that way. I would find a way out of that darkness and never return.
That was a few years ago and my life is changed, but somehow not worse or better. I am so tired by now; I have no doubt that I have already moved beyond my limits. They still ask for more papers that I need to fill out or have others fill out, they still refuse to listen when I say that I can’t do this anymore and they still smile and tell me they will help me not break. They don’t understand, even when I cry and tell them to their faces, that I am already breaking. That I have been stretched so thin, even a gust of wind can break me entirely.
The time has come for me to write yet another e-mail detailing how I feel and that I can barely hold on. I have written many before, but maybe this one will bring about a different end result. Well, I don’t think it will, but I still stubbornly refuse to stop trying. They have gotten their latest requested papers and I have been ordered yet again to go to classes that explain to me what Autism is – like I don’t know.
They don’t understand that going out and being with many other people hurts me, because my filter is more broken than usual. Sounds, smells and light bother me far more than usual, because I have been struggling for a long time. Making me go across town, take buses and trains, only to sit in a classroom with others like me and be taught about what is autism is not going to help. I know what Autism is, I’ve done these things before. If they want to give me the same lessons again, however, I guess I’ll have to go. Maybe they can teach me why neurotypicals never believe what I tell them.
I want to be optimistic, but this is the opposite of what I need. I need to be alone with someone, because otherwise I won’t share or open up. I will be too distracted by everyone else in the room, to exhausted from the trip getting there and too worried about how I’ll make it home to make any progress.
I’ve done this before and it’s always the same. I’ll do it again though.
In fact, a part of me is feeling relief. You see, I have been so scared I might break that I have been struggling to keep myself afloat. I have been trying to be good to me, trying to protect myself and always hoping that something good would happen. I am too tired now. I can’t protect myself for ever.
I will break again. I have little doubt in my heart, because to be honest, I am not sure why I didn’t break yet.
Knowing this makes me feel almost calm. Writing it is even better.
I feel like a burden can now be lifted from my shoulder. Last time when I broke, it took me all these years to pick of the pieces of myself and honestly, I was sure I would not survive breaking like that again. It is not the same as grief or depression.
If I have to break, then so be it. If breaking again is needed for me to finally get the support I need, then I will accept that. I can let go.
Of course, if I break then all I will do is add one more piece of paper to the bunch. Perhaps, if I became paper instead of a human, then life would be better. Or is it that I have already lost my right to be human and become a few pieces of paper in a file called by my name?