Welcome to part two of ?? In the series about shit I deal with as a disabled person. In our last meeting we discussed what it’s like to be out in the world as a wheelchair user. In this installment I will be discussing an even harder topic – what it’s like to have OCD, ADHD, depression, AND a speech impediment mixed with an overwhelming desire to speak my mind/join in on the conversation while staying as invisible as possible.
Don’t stop reading, I promise I’ll try to make it interesting.
I have this thing where I desire two things at the same time and they are polar opposites from each other. On the one hand I do not under any circumstances want anyone to know I exist. On the other hand, I am a writer and absolutely need people to know I exist. An artist, even one who primarily uses words on paper (and or screens – boomer) to tell stories, in the world of social media, needs a presence. Most authors I enjoy and follow post frequently on Instagram and TikTok. The thought of me doing the same makes me break out in hives.
One time when I was sitting in the shop with my totally awesome artist getting tattoo number – who knows anymore – I pointed out how backward it was that I don’t like being stared at and there I was getting more art drawn on me with needles and permanent ink which makes people even more apt to look in my direction and let their eyes linger.
Like I often say, I am an enigma.
One of the ways I combat what my life is as a disabled person in a world not meant for me is being an all-in, obsessive to an unhealthy point fan of things. My mainstay is sports. Almost all of them. Hockey is my #1 but I also watch a lot of baseball. I catch Lakers games when I remember and I’m slowly getting back into pro football. Those are just the things I watch on TV. I’m also monitoring sports news constantly.
The combination of ADD and OCD I have been gifted with makes my fandom next level madness. Maybe it’s because I have too much time or more likely it’s because I have an un-diagnosed disability, but when I find a thing I like I dive all the way in and consume anything and everything about it. Sports and movies and books and actors and TV shows and so on. Compensating for what I don’t know about my own condition? Probably.
All of my social media accounts and anything I sign up for beyond them are all me, my full name, first and last, which, funny story, isn’t even a real name in the first place. The name I go by in my everyday life is not the one on my birth certificate, and it isn’t even the actual last name of the man who was my step-father at the time I was registered for a social security card. So, technically, I go by an alias after all.
Anyway, I use the same name everywhere because that is how I combat my resistance to posting my face and or voice on the Internet. My user names are also my author name.
Thus brings us to the elephant in the room. Why, you might be asking, do I not want to post my face and voice on the Internet (in the form of Instagram stories or TikTok videos)?
My body is disabled. My brain is functional. Some might call this a blessing. And for the most part I think so too. But sometimes, it’s a curse. I’m aware. Too fucking aware, of how people like me are perceived. Some people, not all, but some, see a person in a wheelchair and assume if the body is broken so must the brain be.
Mine isn’t. And because of that I try to be as normal as any other human is or can be. And then I open my mouth and the questions begin again.
Are there words you just don’t ever want to hear again as long as you live or is that just me? If I never hear the word ‘what’ again that’d be amazing. ‘Huh’ is also on the list of words I’d like to wipe out of existence. Then again, I’d much rather people say one of those things instead of doing what they tend to do which is make assumptions about what I said or just pretend they heard me and then make it clear they didn’t when I have to repeat myself a minute later after they realize they didn’t understand what I said and now they’re stuck.
Nobody likes having to deal with customer service for any reason. I cry every time there might be the slightest chance I have to make that call. To the point that sometimes I’d rather be without the thing than ask someone why the thing isn’t working.
So the idea of putting myself out there, even on my own social media sites, makes me want to throw up.
Also, the one time I did…
Some people have mid-life crisis-level meltdowns and go out and buy sports cars or completely change their wardrobes or leave their partners. Whatever it is that they think needs changing. I don’t think I really had one at the age of 35 but right around that time I decided it was a good idea to sign up for a message board whose members were nearly all gay men. It wasn’t by any means L,B,T,Q or + friendly and it certainly wasn’t straight-friendly. It was for gay men. Full-stop.
I did it anyway. Because they were funny and I had things in common with them and quite frankly, I was naive even at my advanced age.
To say it went about as expected is putting it mildly. I started out lurking around, not making myself known. I used a name not anywhere near my own always with the intention of never posting a word on any of the topics, of which there were, endless numbers. Then one day I had what I can only describe as one of the most life-changing in every way moments of my life – I deleted my account and signed up for one using my actual name, and made my first post. And then another one…each one with the first four words of ‘as a straight woman.’
The next six years were some of the best and worst of my life. I met one of my best friends, along with many others I still talk to consistently, had my heart and spirit broken, and learned everything I needed to know about how I will survive being visible on the Internet, and, sometimes in public. It gave me the courage to speak my mind even as I was being called every derogatory name for women and taught me that there are some topics you can just let people be wrong about.
It has been a very long time since I have been anywhere near that message board and in the time that I have been away from it I have made a point of staying out of the conversation even when its happening on my own social media pages.
Having a strong desire to be just like anyone else, perceived or otherwise, is a constant battle. And the way I combat that is not putting myself out there unless absolutely necessary.
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