Not long ago, an old friend and I were catching up at the coffee house we both used to work at. I had entered a Master’s program in Boston the previous year and was visiting San Diego to see friends and family. I ordered an ice tea and asked the barista if they wouldn’t mind setting it at the counter where we were seated. After sustaining a traumatic brain injury (TBI) a few years ago, I have trouble carrying any kind of liquid without sloshing it.
“You use that as an excuse a lot,” he carelessly replied, as if I had just said for the millionth time that a dog ate my homework.
Except it’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage. Since my traumatic brain injury, I’ve suffered from ataxia and poor fine motor skills. Carrying a glass of liquid without spilling it has become a pipedream; writing anything by hand is painful.
So how is it that even my friends, the people closest to me who know what I went through, could categorize that as just an ‘excuse’?
It’s not an excuse. I might look uninjured, and mostly act uninjured, but it is an unequivocal fact that I have brain damage.
The answer, of course, is because the brain is locked away inside your skull, and it’s hidden from sight until it’s quite obviously not working right. And since my brain damage mostly exhibits itself in subtle ways, it’s easier for even smart people to brush off my trauma as an ‘excuse’ than to put themselves in my shoes.
But none of that makes me any less disabled, even if it took me a while to accept that fact myself.
Throughout the majority of my life, I was proud of how I communicated. There’s an ironically unspoken premium placed on the ability to communicate in our daily lives. We take for granted our own ability to talk — how easily we can improvise a sentence. Or, at least, I did, until it was taken from me.
From a young age, I loved to read, even annotating books to tease out their meaning. I was a natural critic: I never had a problem explaining why I thought the way I did about a book. As a military brat, books were my constant friend; I’d take them up into trees in the backyard of whatever new home we’d move to, and while the day away, perched on a branch, devouring a novel in the shade.
I never stopped reading, and I never stopped climbing trees. When I grew up, I went off to the University of California, Santa Cruz’s campus (full of redwoods) to study literature. And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.
And it was there, while climbing redwoods near campus with friends, that I experienced my traumatic brain injury, after my chronically low blood pressure caused me to faint and drop to the ground from the height of 20 feet.
I ended up in a 10-day coma. After I woke up, the doctors told me I’d experienced a traumatic brain injury, with all of the complications therein. Over the next six months, I relearned how to walk (albeit with regular balance issues that persist to this day) and overcome a paralyzed vocal cord. Meanwhile, damage to my occipital lobe caused diplopia (double-vision) that was fixed with an eye muscle surgery nine months after my accident.
At first, everyone seemed to understand all of the initial physical issues because they could see them — I clearly couldn’t walk and my voice was barely a whisper. When I looked at someone, my unfocused eyes gazed past them, a something my friends and family lovingly called “eerie.”
Eventually, though, the symptoms of my brain damage faded away. They never quite disappeared, but they became easy to overlook, even if my brain itself was still damaged and healing. For example, if more than one person spoke at the same time, I couldn’t understand what was being said. If someone’s phone rang, it scrambled my thoughts and made it hard for me to keep my balance or walk.
I was still literally and figuratively unbalanced… but people didn’t really notice anymore. “I feel like Harrison Bergeron, that Kurt Vonnegut character that has his thinking interrupted with loud noises pumped into his head,” I once told my boyfriend; he looked at me blankly, and suggested we go to a bar, oblivious to the fact that cacophony was the last thing I needed. Plus, dodging stools in dim lighting with my balance issues? Yeah, no thanks.
Besides walking and disruption from sounds, I often struggled to find words and found myself tongue-tied. I’d mean to say one thing, and say the other, or else smash together two unrelated words into a nonsensical portmanteauPeople corrected me all the time, and if I struggled or stuttered mid-sentence, they’d attempt to finish my sentences for me… often incorrectly For someone who prided herself on her ability of self-expression, my aphasia mortified me.
There are other symptoms too. Because of my balance issues, I now get chronically car sick, and can no longer legally drive. The abilities I do have take a nosedive if I don’t get a full eight hours of sleep, including my balance and spatial awareness.
Even so, the closest people to me regularly forget that I have a brain injury. For example, during a road trip to San Diego with my mom in which I was playing navigator, I once forgot the word ‘left’ when she asked me which way she needed to exit the freeway. Instead, I stuttered and frantically pointed where she should go. “I can’t look at you when I’m driving,” my mother snapped. “If you can’t give me directions you can’t sit up front and you’ll just have to sit in the back and be sick.” At the end of the day, she would find where we were going and forget about the difficulties of getting there; a year later, I’d still remember that car ride and the burning shame I felt after.
Why is it so hard for others to accept that I am disabled? Perhaps it is partially because I have had trouble accepting it myself. For years, laughing at my shortcomings and saying I was ‘brain damaged’ was my way of flippantly avoiding the hard truth that I am disabled, and this is my life now.
You can’t expect other people to accept your disability if you can’t accept it yourself.
Now, entering my fourth year of recovery, I can admit with conviction I’m disabled. But my friends and family still often act skeptical, telling me I don’t look disabled, as if every disabled person looks similarly. These days, when someone doubts my disability, it’s easier for me to show them my subway pass with the handicap symbol in the corner than try and convince them.
And that’s wherein the problem lies: I can’t have a doctor following me around all the time saying, “Yeah, she’s disabled. Believe her.” When a disability is invisible, it can be ignored or trivialized at convenience by everyone, even the people closest to them. So it’s up to me to be my own advocate: telling people, for example, when a bar is too loud for me, and forcefully correcting people who accuse me of using my brain damage as an ‘excuse.’
Because if there’s anything I’ve learned from all this, it’s that you can’t advocate for yourself if you’re living in denial about the ways in which your life and abilities have changed.
After all, you can’t expect other people to accept your disability if you can’t accept it yourself.