What just happened to me wasn’t the greatest challenge anyone has ever gone through. There are people who suffer worse every day. I am aware of that. It’s really not even the worst ableism that I’ve gone through in my life.
It was, however, a huge blow to my confidence and self-esteem.
With my sensory issues, I’m in pain and/or overwhelmed most of the time. Also, there are early childhood training issues that I’m working to overcome. I think a lot of adults (parents and educators) get frustrated by the communication issues, and just give up on teaching us how to figure things out on our own. People who are unaware that we *can* be taught to be self sufficient settle for “scaring us into being well behaved.”
i.e. If you get hurt it’s your fault for calling attention to how different you are. Anyone you talk to might be trying to take advantage of you, or worse might be tolerating you out of politeness so never trust a friendship. Be suspicious of anyone who says they like you. You will never figure out the reason for the rules, so just do what I say, when I say.
I understand. They love us. They want to protect us from getting hurt.
But getting hurt is how everyone learns. And the way we were made means we will get hurt a whole lot more than your average kid.
If we shrink from it, we never become independent. We never contribute to anything. We can’t ever find our own happiness.
So come at me world! I might need a break every now and again, but I will keep coming back for more. You will be amazed at what I can accomplish. And I will not let fear stop me. The world might be full of pain, but there are so many beautiful people and things out there. If I let my fear of them control me, then I never get to enjoy them.
In other words, I’ve cultivated a positive attitude that would make Pollyanna roll her eyes and wretch. There is a reason I sang “The Sun will come out, Tomorrow” so often as a small child. If I don’t believe that, then everything keeping me running breaks. A child I babysat made unflattering comparisons to Unikitty. . .
There is a bit of a trick getting myself from crying to nauseatingly cheerful. I’ve cobbled together a system. This is how it works:
Step one: Uncontrollable, incoherent sobbing.
So Yeah. I got off the phone with (VOLUNTEER COORDINATOR’S BOSS) and cried. And cried. And cried. I think I spent a good two hours crying. I felt so helpless. There was literally no way I could defend myself. There was nothing I could do. As I had nowhere to be and no urgent responsibilities, and I had the room. I took the time to sob my eyes out.
- Binge eating.
Some people are fat because they are built that way. Some people have a slow metabolism. Some people are fat because of thyroid problems, or other such things. I’m fat because when I get stressed, I make bad choices. I’m trying to cut this stage out, but it’s not easy. Exercise doesn’t work because I’m normally clumsy and prone to injuries. When I’m upset I’m a millions times worse. The last time I tried exercising while I was upset I wound up in the emergency room.
- Angry writing and face booking.
Once I get myself under control enough, I start trying to write down my feelings so that I can sort them properly. I also give the bare bones of why I’m upset on facebook.
My friends and family are great. They usually have experience with things and can send me information that I might not have. At the very least they can send me those two words that every woman wants to hear
Seriously. That’s usually all I want. You don’t have to wail, rend your clothes and gnash your teeth. I am capable of finding my own damn solutions. What I want is “Damn! That’s really unfair!”
- Reassuring the concerned friends and family who are calling me because after stage three they are worried I’m having a psychotic break.
The majority of people who love me give me my two favorite words after I post something like that. I do have a few friends and family (lets be real, they are all family) who are always worried that I’m inches away from a psychotic break.
I think it comes from the fact that they knew me as a child when I wasn’t diagnosed. I had a lot of meltdowns, so they fear any stress is the sign of an impending meltdown and move to intercept.
“It’s out of love that they do this.“ I tell myself, as I’m reassuring one of my female relatives that she doesn’t have to call the nice young men in the clean white coats.
It’s gotten better. At least now I no longer get calls where they order me to “Take down what you just wrote! You are embarrassing yourself!” or “Are you sure it happened the way you said it did? Maybe they didn’t mean it!” or “Well, in their defense. . .”
Just a hint:
Nothing will make someone psychotic faster than telling them that they don’t have the right to feel or express pain.
This time it was sweet. It was only three phone calls and they all took me at my word and we had a pleasant conversation. I look forward to this stage now. Explaining my anger to people helps me transition from the raw rage of stage three to the quiet cerebral anger of stage five.
- Tranquil fury planning how I’m going to handle this.
Tranquil Fury. It’s a beautiful wonderful phase that I learned to harness in high school. It’s when you are so angry that you pass right beyond the visible signs and you look calmer than you’ve ever been in your life.
I have a high-pitched squeaky voice. I’ve been told I sound like a small child countless times. When I’m relaxed and happy it’s a twelve year old girl voice. When I’m trying to sound like an adult, I manage to sound like a fifteen year old. When I’m scared or sad I sound like a five year old.
When I’m under the influence tranquil fury, I sound like the creepy five year old girl in a horror movie. My voice sort of loses all tone and inflection.
“Come play with me. Forever and ever. . .”
Oh, I’m enraged, but I’m also thinking clearly and logically. I channel that rage into identifying how I’m going to move past this.
I wrote the letter. I tracked down who I would send it to. I also figured out what I would do now that I was at loose ends. Clearly that program wasn’t an option. How can I better spend my time? I made some calls and I have some new plans in the works.
- Putting cartoon fight songs on repeat on my ipod and singing with them loudly and off key.
I hate most music. Not all music, though. If it’s a song I can understand, know well, and I associate with positive things, I freekin’ love it.
I can’t just let go of these feelings. I can channel them in a positive direction. I’ve burned out a lot of my rage in stage five, though, so all I need to do now is convert what’s left to steely resolve not to let anyone make me ashamed of what I am.
This time my mix tape consisted of “Stronger Than you.” From Steven Universe and “Neon Pegasus” from Parry Gripp.
Back to back. On repeat. Four a good five hours. The Engineer came home while I was singing the chorus to stronger than you. Without the music and the context, it sounded a bit like I was howling, I’m told. Oh well. He’s just jealous because I’m made of love, and it’s stronger than him! Also, you can take my glitter, but you can’t take away my sparkle.
- Wash face, put on smile, and move on.
This part is hardest. I gave myself until the next morning to let out my feelings. They aren’t all spent, but I think I did a pretty good job of working through them. I’m still a little scared of people. I’ve spent the past few days mentally chastising myself every time I catch myself wondering when someone talks to me:
“Do they mean that? Or are they just trying to make you feel better?”
Heck, my boss at the place I volunteer at as a domestic violence advocate said “You are our best volunteer. We really value you here.”
and I had to shut up that stupid voice in my head that told me “They are only saying that because they have to.”
When I talk to people, I have to silence that little voice saying “Shut your mouth! The longer you talk, the more likely people will figure out something is wrong.”
But I washed my face on Friday morning, and I put on my smile. My eyes were too swollen to wear contacts, so I had to wear my hipster glasses. My smile was a little watery, but steady.
Then I went to my volunteer shift at the courthouse, and helped survivors of domestic violence fill out paperwork. And by the end of my shift, my smile was no longer watery.
Because the best thing my mother ever taught me was that if I feel depressed or miserable the easiest way to feel better is to do something nice for someone else. I am not useless. The lady who hugged me definitely felt like I helped. My pain made me more determined to take everyone who spoke to me seriously. So, in a way, my pain was good.
When I got home I got another phone call from the people at (VOLUNTEER ORGANIZATION), but we’ll get to that next time.