I inherited an odd brain. When the winter sun hits the three o’clock slant and stares me straight in the face, I feel like my eye sockets are blistering–even with my eyelids squeezed shut. The wrong colors set my teeth on edge. Dusky reds and velvet purples soothe me. But whites, blues, yellows, and even greens scream at me from walls, scarves, sculpture gardens. They gloat so hard it throbs my temples. The clamor of a city street, as traffic rumbles past, can knock me over like a gut punch. Sometimes it all makes me want to kill someone.
So I’m at my physical therapist’s office before Thanksgiving, and out of the blue, he tells me migraines and autism have more overlap than most people think.
Which is funny, considering that my brother and I believe our mother is probably autistic. But I don’t tell the doc that.
“See,” he says, “have you ever worn one of those lead aprons you put on for X-rays?”
“Oh,” I sigh and visibly melt into my chair. “Those are so relaxing.”
“That’s what a lot of my patients say.” A lot of his patients are vestibular migraineurs. “You know, they make those for autistics. If you look up weighted blankets.”
I think this is terrific news. Lots of people also have my weird brain, and they’ve found all sorts of ways to make it work. Good news.
My parents wouldn’t agree. I haven’t spoken with them in ten years come this fall, but I can say this with confidence. My father firmly believes, like a certain demographic of red-blooded American male who is–fortunately–dwindling, that any physical or neurological difference is a defect. Disorders are best ignored or disowned. Dysfunction or injury, like a bone-broke horse, is better taken into the back yard and shot than turned over to a physician.
I can’t count the number of times my parents denied me medical care or delayed it. My father outright told me I made up my Tae Kwon Do injuries to get sympathy and repeatedly forced me to perform tasks that exacerbated the damage. When my brother broke his arm at age five, my mother bent over him and poked curiously at the shattered elbow, disinterested in his screams. When he was in high school, he reset his own shoulder when he dislocated it because he was done putting up with their shit. In college, I felt similarly. But still preoccupied with social pressures to be a passive, well-mannered girl and suffering from the physical and emotional anguish of two years of injuries that had not fully healed, I nearly committed suicide. When I inevitably sprained my ankle again–which was still recovering from another injury–I moved in with my boyfriend. It probably saved my life.
So when I say my mother probably has autism, I’m saying it coming out of a family that had positioned itself as anti-diagnosis and anti-treatment. There’s no way to be sure because my parents will never allow certainty on these issues. They believe that to be diagnosed is to be devalued. And it can feel that way in certain circles and around certain people who have never had a disability or long-term injury and so assume that everything bodily is just like the common cold. If you are of good character, if you have a strong will, if you just power through it and eat lots of chicken soup, then you won’t ever have to face the limitations of the body. You’ll never have to face the consequences of chemicals gone haywire in your brain.
Such a philosophy is akin to individualism, shoved up to the cliff edge with a loaded gun held against its skull. How far are people willing to take this shit? Where’s the line? Do you take meds for epilepsy or cancer, but not migraines or the pain of broken bones? How deep into the mire of chronic pain and lack of functionality does life have to sink before you decide the available treatments might be worth it? Or are you simply on strike against all healthcare, refusing to accept anything less than Star Trek-quality fixes for mortality?
For my parents, the answers are: death, there is no line, I decide what meds are good by how much I like them, it’s never worth compromising your pride, and sounds good to me. Because to do otherwise means admitting that while you get to choose lifestyle and diet, you don’t get to choose your genes and you don’t get to choose much about the environment that can trigger them. I don’t have the money, temperament, or the skill set to live on an Amish farm where there are, admittedly, far fewer migraine triggers. So I have to deal with this. That’s not the approach my parents raised me to have.
But you know the saddest part of this story? Because of my parents’ ideology, my mother will never be diagnosed. Which means she will never be treated. Which means she turns 64 next month, and she will never know why she snaps so violently when rooms are messy or schedules are unpredictable. She will never know why she shouldn’t ask, “What’s going to happen?” during movies no one in the room has seen yet. She will never learn how to read faces or properly meet people or how to manage the same panic I feel on a city street.
She will remain, like she always has, locked away in her own home, picking the skin from her elbow, and staring blankly at the wall or the television screen. Once a brilliant young coder, she snapped on one too many jobs, gave up the world, and surrendered her own potential to the safe anonymity of never being diagnosed. She could have learned skills to cope, to manage, to live more fully. She could have tried a weighted blanket. Instead, she remains locked in her own mind, sentenced for life not by a diagnosis but by her own determination to never, ever let anything be “wrong” with her.