June 13, 2022
I’ll probably send you some sound bites. I will try to make them sound bites, for your sake. I know that’s what works best for how you process words. But let's face it. I can't write in sound bites. Too bad, so sad! READ IT ANYWAY. (Don't you just love my little dominant streak???!!!)
I was doing really well when I met you, I wasn’t depressed for the first time in decades, literally. I had worked so hard, I had done TMS twice! And I worked diligently with a psychiatrist and a counselor and I was getting involved in support communities and I was doing exceptionally well.
Even when I got the herpes diagnosis, for some odd reason, it turned into a major positive because I was able to research it and help people. People reached out to me. I still have a significant group of newly diagnosed men and women that I correspond with. I made a difference and it almost made it OK. And then I met you. You had such incredible qualities, kindness first and foremost. And you were honest and direct, didn’t appear to have the ability to manipulate, and you are so incredibly real and aren’t able to be anything but real. I’d never experienced those qualities in anyone else. Plus, you were different. I wanted to understand our differences. I was intrigued.
I was doing so well, too! I was even, and relatively sane, although Mushroom Day was a fucking fiasco. But after Mushroom Day, I decided I’d never cry in front of you again. I decided I’d never show you the true extent of my sadness, because it would be too much, and I didn’t want to lose our friendship over ME being too real.
I honestly believed I was well enough I could control my emotions and stay really really even when I was with you. I like the phrase I used: “modulated emotional voice and tone”. I knew in order for you to be comfortable, you had to be around people that had relatively even, modulated emotional voice and tone.
You’re auditory (which, by the way, it would have helped if you had explained more than a week ago!). You don’t deal with raised voices. You literally put your hands over your ears on Mushroom Day, because I got too excited, too loud, I scared you. I was horrified. I hated myself for having hurt you. I was quiet then, the rest of the day. I cried some. Then I left without saying goodbye. Luckily, you were in such an altered state, there was little you recall about my behavior. For which I am thankful.
What I know to be true is that my volume fluctuates with my level of excitement. My tone is uneven, it’s a reflection of what is happening inside of me. So, I tried really really hard to control those things about my voice. My facial expressions, that wasn’t so hard. No matter my expression, you weren’t able to read it well, so at least I had that outlet I could use to express my emotions without betraying myself.
But, as you are well aware, we cannot mask the truth of who we are for an extended period of time. And my time is up. I’ve fallen back into the terrifying territory of rapid cycling bipolar. Now I’ll fight, I always fight. This dip back into hell won’t last forever. It never does. But I’ve also never had a six-month period of relative stability, either, so your guess is as good as mine as how long I’ll be hanging out in this very sick state of mind. And believe me, even with the exhilaration of the brief euphoria that comes with the occasional manic phase, I have fallen into a quite mentally ill state.
But now I want to talk a little about you, and what I see. I do see how people treat you. I do see how people are put off by your presentation. I see it. And it breaks my heart. I think I’m so sensitive to it, because I see the same thing, over and over, day after day, when my mother interacts with servers in restaurants, the bank teller, the man who comes to the door to hand out a political flyer. My mother, sweetest old lady on the face of the earth (except to me) terrifies people just because she's deaf.
Over a lifetime of observation of how my mother interacts with the hearing world, I’ve developed this philosophy. I believe if you’ve never spent time with someone with a particular condition, it can be daunting, without a doubt. However, you have two choices to make, two paths you can follow.
You can go into flight mode, where terror overtakes, you avoid eye contact, you make yourself small, draw as little attention from the disabled person as possible, hand them off to another worker to manage, anything to get out of the situation.
Or, you can be like me. I see the person is differently abled, and I think, “Bring it! I can handle this!” I treat the person as I would want to be treated if I were them. I might make assumptions about how to do that, and I most certainly make mistakes. I might make them angry. So then I proceed to call out elephant in the room.
“I’m so sorry, I’m trying to help. I’ve never spent much time with visually impaired people, so I’m not sure which arm to hold out, how to guide you. Please let me know what to do. I want to learn. I want to help.”
This is ALWAYS met with positive response. And I learn how a visually impaired person wants to be guided across a busy street! Win Win!
People, I believe, are basically gracious, forgiving, and kind. But not all people. Some are like me, I like to think most are like me, especially if they've got a bit of age and life experience on them. But many just aren't.
Autism is different than deafness or blindness. It cannot be immediately detected. It’s only during the exchange of a bit of conversation the other recognizes something may be amiss. First of all, the person you’re speaking with takes a few seconds to register she’s dealing with a condition that is not physically obvious. Then there’s the embarrassment of not being equipped, in terms of life experience, to deal with the communication anomalies. And yes, that’s a negative word, anomalies, but pretty fitting.
When I first witnessed the way people reacted to you, I wanted to walk up, involve myself in the conversation, smooth it all over, make you feel accepted, and help the other person understand there is no “wrong way” to deal with someone with processing disorders. Because there isn’t. Only time spent with someone on the spectrum is going to help a person understand how to communicate effectively with someone on the spectrum.
FUCK! I say that and I just now realized how well I was doing! I was making really good progress. I was really starting to get you. That makes me happy, but I’m crying anyway. Motherfucking rapid cycling bipolar!
The other thing I wanted to do, and still fantasize about when we’re together, is just taking you in my arms, holding you, telling you how valuable and kind and sexy and wonderful and lovable you are, and having you hear that and be able to own that.
But soon after I met you, I realized how completely perplexing that behavior would be. And so, I didn’t take you in my arms. I didn’t hold you and cuddle you. I mean I did a little. I held your hand. I ran my fingers up and down your body. I tried to push down your funny sticking up hair. I played with your nose in bed. I started to stick my finger up your nose to see what you’d do. You didn’t like it. Which made me smile. Lovers do shit like that, Don. They put their fingers in funny places to make their partners laugh. But you didn’t like it. So, then I knew that much more about you. What to do, what not to do. And I learned the boundaries and I respected the boundaries.
Have a great week, Don. I love you, not scary love, but the love that everyone wants to know and receive. The safe kind of love, that kind of love we were created to experience. I'm not the only one that cares so deeply for you. There are legions that feel the same. You are truly loved.
[Originally published 6/13/2022]