A Day in the Life
My Kryptonite comes in the form of sensory data. Smells in particular. This is kind of hard to avoid when you live in this world and you want to be with people, so this is why, on this cold December day, I am standing outside the museum I used to spend a lot of time in, trying to gather the courage to go inside. Both feet are firmly planted on my favorite brick in the walkway, the one inscribed with a deceased family member's name, as I try to gather strength from her memory. Somehow, standing on that brick just so and looking up at the elegant building centers me, prepares me for the onslaught of sensory and mental overload that I know is coming. Fragrances, chemical smells, or just the idea that these things might exist in any given place - this is enough to completely short-circuit my system.
I open the door, and I walk in, and I freeze, as I usually do, but I make myself keep going. There are places where smells genuinely overwhelm me. Then there are places where it's just the idea of smells that overwhelms me, and it takes some time for me to tell the difference between the two. Often, it's a mixture of the two. My brain is sending me signals telling me how dangerous this is, and anxiety overwhelms my body. People always want to know "What happens to you when you go in buildings?" and I never know how to explain it. How can you? This time, though, I think I might finally have found the words.
It feels like being under attack. It feels like hypervigilance. The sights, the sounds, the motion, but especially the smells and the feelings in your body, come into sharp focus. All I can think and feel is the way my body feels. Everything feels dangerous. I scan the environment looking for threats. My brain gets fuzzy. There is a feeling of pressure on my head. I feel frozen, and a little short of breath. It takes effort to move the limbs of my body in order to take a few steps forward. I've only gotten halfway down the hallway and I already feel like I've ran a marathon. I wonder if I can go any further. I don't want to stop. I've come this far.
I stand in place and stare ahead, begging silently for someone to offer comfort, for something to take me out of this increasingly intolerable inner hell. I try to smile and be companionable to the people around me, but all I can manage is to look suspiciously around me, trying to suss out danger. I take a few steps. There's no one familiar around. No one to act as point of refuge. Everything looks different. I know if I can just get in to the other room, the person I'm looking for might be in there. I try to ignore my thoughts, and move forward slowly, each step feeling like I'm wading through molasses, each step an effort.
I walk through the door of the room to the right, thankful beyond belief there are people in there so I don't have to go to the room I'm most uncomfortable in. A couple older men are familiar, but not enough to talk to. Then, with utter relief, I spot the person who I feel most comfortable with and walk over to her, knowing she'll know what to say, and that she'll realize how hard it was for me to be there. She hugs me, and calls me sweetie, and relief floods me. Words are hard and thick but they come out, so grateful to have a home. She has to leave, though, and rubs my arms before leaving. I am grateful for the affection, but nervous about finding someone else to talk to.
Someone recognizes me and says hello. She has a compassionate energy about her. I forget all my usual manners and ability for small talk, all the superficial questions that people use to create conversations with strangers, and start babbling about how I haven't been here in five months and how nervous I am. Then I backtrack and ask where she's from and try to be "normal," but the words just don't come and I can't think of what to say to try to act casual, and she's telling me that I'm doing fine but I can't quite believe her. She leaves, and then I see someone I know from somewhere else that's friendly and he feels more like an anchor, and he asks if I want to go upstairs with him to the service. I decide to, and manage to sit through the service, the thoughts in my head as usual taking over about ten minutes in, but managing to keep it together long enough to stay.
There is no opportunity for socialization afterwards, but the guy I sat with offers me a ride home and my heart feels full for having been noticed and cared for. I decline because I realize I can't handle a new-to-me car and the walk will do me good, and go to an eatery I like hanging out in because I know I need social interaction to deal with the emotional fallout of having gone in a challenging building, and going to my apartment will make the emotional fall out intolerable. Two hours of thank-God-I'm-connecting-to-something-outside of my brain social interaction later, I feel somewhat safe and stable again.
As I walk from the musuem, I am aware of the feeling of not being able to breathe well, of feeling stiff and agitated and like my internal organs are all squeezed up against each other, but I wonder, was it worth it this time? This time, I think maybe. If this is what I have to do to fill the emotional dead space in me, if this is what I have to do to fill the aching loneliness and emptiness that makes getting up in the morning and living in this body such a challenge, then maybe I can do it. It just would be nice to occasionally have days that don't involve coming to terms with the non-functionality of my body, but since I don't seem to have a lot of options, I'll try my best and write about it after to cope with the emotions from it. Or as they say in Latin - this was painted on the edge of a building I rode my bike by as a kid - "Veni, vedi, veci." I came, I saw, I conquered.
The Profound Autism Alliance Summit, April 5 2024
7 months ago
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