On today’s list in the bullet journal, I have written “do the scary writing.” I was excited to add that item last night as I sat in bed and made my plans for today. I’d just begun reading Cait Flanders’s Adventures in Opting Out and nodding along with her lamentation in the introduction about how difficult it can be to cast off the bowlines and sail in a new direction when there aren’t any real-life role models (especially those personally known to you) who have done the same. That we have to chart new courses for ourselves through the unknown, and that maybe, eventually, we’ll be able to be that distant beacon of hope for someone else looking to do the same.
That’s how I read her words, anyway, and it stirred in me once again the desire to “do the scary writing” that would lay bare parts of me I’ve tried rather hard to disguise over the decades, all for the purpose of offering someone else some comfort.
And that’s a worthy and earnest goal. It’s always been a companion at my keyboard, and even a partner as I compose and revise in my head so many sentences and dense passages that I never end up actually writing down—because I get busy or distracted, or because when the sun comes up my nighttime bravery evaporates.
Do I care what other people think of me? Sure, of course I do. I don’t think I’m worried as much about the judgment of others as I am about how those opinions—well-founded or not—are reflected in their actions. That’s a fancy way of saying I’m afraid of getting stalked again. I’m afraid of being targeted again by trolls or by people who will commit real-world violence. It’s not a small consideration, and it has kept me mostly quiet for a very long time. I admit that I’m embarrassed by that fear, too.
But then I think about the essay/opinion piece I wrote for my high school newspaper when I was a senior. We were a month or two into the new school year, and I had (again) taken on too much. I had a full schedule of all honors and AP classes and I was involved in a large number of extracurricular activities and groups — too many to even remember now, more than thirty years later. One night, after a full day of school, followed by a full evening of theater rehearsals for the play in which I had a small part, I sat in my bedroom at home and prepared to do my homework for the next day—and then looked at the clock and saw that it was already past 11 pm.
At the time, I called it a stress-related breakdown. Feeling so much pressure to get everything done, I was instead paralyzed by the workload and by my own and other people’s expectations, and I ended up sobbing all night long. I was a wreck at school the next day and kept having to escape into the bathroom to sob some more. I was incapable of doing anything more—or doing anything at all, really. When I finally did get myself back together again, I wrote a long piece for the student newspaper about how we’re all vulnerable, how we all might be struggling, and how it’s okay and even necessary to ask for help because even being a straight-A student (who everyone assumes has her shit figured out) doesn’t mean you can’t and won’t still fall on your face, hard, every once in a while.
They printed that story, and I felt people watching me in the hallways after that. I heard the whispers behind my back. But I also received messages of support and even gratitude, from students and teachers alike. If anyone said anything mean to me about it, I don’t remember it now. If anyone went out of their way to harm me because of those words, it didn’t leave much of a lasting impression. I don’t know if that public statement of mine did anything to help anyone else, but I like to think that maybe it did.
Decades later, I recognize that what I experienced then was more than just a breakdown. That was an autistic meltdown, and a rather serious and prolonged one. I was hugely overwhelmed by everything I’d taken on, and I was feeling very much alone and at the mercy of expectations and circumstance. It’s kind of a marvel that I didn’t have an extended period of burnout immediately thereafter. But it would be another thirty-two years before I even knew I was on the spectrum.
Today, I have even more of a reason to be less circumspect with my experience, because there’s an untold number of adult women with ASD, even into middle age and beyond, who are only now learning about their neurodiversity. I am not unique in this regard, but maybe sharing my perspective and experiences might help someone else on their road to discovery, just as I’ve relied on the open words of others as my journey deepens. There’s also my perspective on living with chronic illness and pain that might reassure someone else and let them know that they’re not alone with their frustrations.
Because isn’t that what I’ve always endeavored to do? To build connections. To commiserate. To offer comfort and encouragement. To detail what feels to me like to a solitary and odd experience but which probably has more threads in common with others than I realize, so that more of us can recognize, share, and appreciate each other and the greater weirdness that is life. Or something like that?
Recently, a childhood friend revealed her own MS diagnosis on social media. She expressed feelings of shame and fear around making this information public, and I feel that keenly. What was wonderful, however, was the outpouring of support and admiration from very many friends in response to her. So many messages of love and strength and respect. It reminded me of that essay in the school paper and of how I’ve struggled for years to be comfortable with being more open about what’s going on with me, and about the contents of my mind, heart, and soul.
My friend showed great courage in posting about her diagnosis, and I am proud of her. For me, I don’t think it’s bravery that overcomes my fear of opening up. It feels instead more like a constant shoving in this direction, regardless of my own shame and trepidation. Maybe this is my way to contribute and to be of service, since I’m limited in so many other ways.
I don’t guarantee that I’ll post soul-exposing essays on my blog on a weekly basis, or that I’ll be open and raw with every tweet. I can rarely predict what kind of day I’ll have, pain- and symptom-wise, nor what will be foremost on my mind. But I can try harder to float with that pull instead of grounding in fear. It feels like a good way to start. But then I’ve had this same spark of intention, over and over again, for decades. Maybe it will catch fire this time.