American culture has become more aware of concussions, contact sports head injuries and other brain trauma. But firm proof of lingering impacts doesn’t always exist.
On April 7, 2017, I was shot in the head by my best friend in our on-campus apartment, one month before college graduation. It was a freak accident. The bullet went through two walls before fracturing my skull, sending shards of bone into my brain. I required neurosurgery, titanium plates and screws.
A traumatic brain injury is just that, an injury that traumatizes the brain, usually a result of a violent blow to the head. More than 5 million Americans are living with a brain injury. There were approximately 214,110 hospitalizations in 2020 and 69,473 deaths in 2021 related to traumatic brain injury, according to the Centers for Disease Control and Prevention. In the United States, guns are the most common cause of these deaths, more than falls, motor vehicle crashes and assaults.
My specific brain injury had its physical manifestations. I lost 20 pounds, all muscle. I had to be near a couch or bed at all times. I wore sunglasses to ward off overstimulation. With the aid of various therapies, I regained my strength.
Invisible impacts remain: cognitive impairment (brain fog, concentration problems, poor information processing, memory issues), personality changes (behavior control, nervousness, depression, anger, impulsivity), chronic head pain, headaches and post-traumatic stress disorder.
In recent years, American culture has become more aware of concussions, chronic traumatic encephalopathy (common among football players) and brain injuries like mine. But we also always want proof, evidence, receipts. We find things suspect; we don’t want to be played.
I may drop things, I may bump into the wall and struggle to find easy words. But, on the whole, I appear as a functioning human being, getting around, doing my thing.
For instance, my last office job was in 2018. I worked as a marketing copywriter for an engineering firm, with flexible hours. I was forthcoming to human resources: Because of my brain injury, I would need a day off each week for necessary therapies and appointments. The law may have required the firm to not discriminate against me, but it was accommodating and compassionate. In time, I got a raise, my own cube and a branded beer koozie.
I couldn’t sustain it.
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Try concentrating on your work, on writing industry-standard marketing copy, sitting at your computer, typing, deleting, clicking, with the ever-present paranoia that someone is behind you, hands on the trigger. Try concentrating on writing, say, a professional but not-so-flashy press release with a bone headache that after an hour without break slowly develops into an eye strain headache. Try some harmless administrative task like posting conference attendee information on LinkedIn while spiraling into the bottomless well of anxiety that is living with a brain injury in a shroud of unintentional secrecy.
In the wake of trauma, particularly in the early days, I was hardly capable of defining my difficulties, barriers and triggers, much less communicating to others how to best accommodate them. I was not, in any way, making people aware. Instead, my behavior seeped through the cracks, and my co-workers filled in the blanks as they wished.
They referred to me as “quiet,” perhaps trying to be nice. But what they really meant was, you never smile. You twitch a lot at your desk, in the halls. You’re easily startled, and we’re sorry for scaring you. You seem to keep to a bizarre time-sensitive agenda. You have not had a good night’s sleep in a while. You’re not friendly. You never make eye contact. You always look away. You walk with your head down.
One co-worker thought I was perpetually hung over from some fantastical, neverending bender of epic proportions. Even though I gave up drinking after my brain injury, I went along with whatever people assumed. It was easier that way. I had neither the energy, the language nor the ability to clarify my situation.
Around that same time, the insurance giant tasked with thwarting my personal injury claim sent an able and menacing representative to my lawyer’s office. He asserted that this situation of working 32 hours a week was entirely preferential, and not — here is the key term — disability-based.
He asked me, bluntly, “What couldn’t I do? Exactly?”
And that is the first time I verbally identified myself as Disabled (capital “D” Disabled to recognize shared identity rather than lowercase “d,” disabled, the adjective, though if you have a disability, the case is entirely up to you). It was about three years after the event that made me so. It bellowed out of me, unleashed, a dormant power rising, “I am disabled! I am Disabled!”
My brain injury, I came to understand, is an invisible disability empowering the adage: You never know what someone else is going through. I didn’t always identify with the term, didn’t always wear it in emblematic fashion in my author bio, on my website or use it when fielding the question, “What do you do?” Someone close to me steered me away from this kind of identification, concerned that people would think I was purporting to be in a wheelchair or missing a limb.
This fear — that you will not be taken seriously, that you will be ostracized, that you are faking it, that you are exaggerating it, that you want attention, sympathy, pity, special treatment — this fear is what isolates and marginalizes. On the opposite side of the spectrum, there’s token accessibility culture, which often coddles those with obvious disabilities to the point of diminishment.
I’ve questioned whether I suffer enough on a daily basis to qualify as disabled, patting myself down in search of missing credentials.
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I do. That’s a sincere assessment. I qualify as Disabled. I identify as Disabled. My brain injury permanently limits my abilities, it puts me at extreme risk should I suffer further trauma, it curbs the extent of work and play, it alters my interior life, it dictates my daily path through the world. And there are thousands upon thousands more like me.
Our injuries won’t tell you any of this. But we can. And we expect to be heard. Invisible disabilities and the considerable problems they pose, by their nature, require their own unique awareness and broader recognition across the board. The conversation is just getting started.
Paul Rousseau is a disabled writer living in Minnesota. His book “Friendly Fire: A Fractured Memoir” will be published by Harper Horizon in September.
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