A Tale of Two Brains: The One You See and the One You Don’t
When people think of me, which I don’t assume is often, they probably don’t associate me with the term traumatic brain injury (TBI). Why? I’m not “slow.” I don’t have any outbursts. Looking at me, I don’t appear to be “in need.” I can make friends easily and have lasting friendships that span decades. I quickly solve problems and disagreements and have organized dozens of extracurricular and community events. Nothing about me screams traumatic brain injury. Let alone more than one. (The following is not to sound braggy; it’s to make a point, and it’s my story.)
I’ve always excelled academically. I’ve always tested in the 99th percentile, including on college admissions tests. I inhaled books but was bored with grade-level books from authors like Charles Dickens (he has always been a fave) and would read the “real” editions. I was reading 300+ page books about ancient dynasties and civilizations for pleasure. When I was in the fifth grade, the librarian told my teacher, and they asked me if I wanted to audit the eighth-grade world history class, which I did. I participated in several programs for “gifted” students from the fourth grade through high school. I’d argue academic theories and consensus with teachers (the bias from some was strong, primarily in literature) and received academic scholarships, starting college at seventeen, where I took senior-level courses as a freshman. I triple majored with several minors and certificates and obtained my master’s degree. How’s that for “left behind?”
I’ve always been political (seriously, I found a poem I wrote in the third grade that addressed climate change, police brutality, and other issues in the early nineties). I was elected mayor in the third grade while studying local government. The mayor was our version of a class president, with a city council of seven, our version of Congress. We needed to campaign, have speech debates, the whole thing. I was always picking up litter and organizing litter-picking events when I was ten. In high school, I was part of a group of students who campaigned for a GSA (Gay-Straight Alliance) and organized and participated in marches protesting state legislation. I served on committees that visited colleges to educate future educators about creating safe spaces, among other things. I volunteered for various activities, culminating in receiving multiple scholarships for community work and service from the Rotary Club, GLSEN (Gay, Lesbian, and Straight Education Network), and other organizations. Mind you, this was in the nineties. Engagement, sociability, and add in opinionated – check, check, and check.
In college, I went on to serve as a Resident Advisor (RA) for a dorm, President of multiple organizations, and head of campus education for relationship violence prevention, which meant I was always organizing. A concert, a fundraiser, salsa dancing, and multiple dorm programs per semester – I handled everything to the tiniest detail, including security, permits, permissions, and fun things. I created a video promoting diversity for student housing. Some perceive people with traumatic brain injuries as unorganized and/or having difficulty focusing on something. Oops, their mistake.
These leadership roles meant a lot of conflict resolution and problem-solving; you need to be at the top of your game. I might be the most diplomatic person you’ll ever meet when it comes to other people’s problems. I am an administrator and/or moderator for several online communities with thousands of members, focusing on various causes. Stereotypes lose again. Sometimes, I can be impatient and quick-tempered, but those are traits I’ve inherited from my family. (No one questions this.) However, if I’m irritated or frustrated, the worst I’ll do is be snappy. I don’t yell or call people names. No belittling. I’m not moody, though I can be intense. Still, emotional stability and regulation – check. I’ve already mentioned that I have healthy relationships spanning decades and do not maintain unhealthy ones. Social skills, check.
I’m very physical. Walking is my happy place. I used to run, pick up litter, and swim because I loved it, and though I often broke bones because of brittle bone disease (not my TBI), I was a beast in a cast. I was nicknamed “the wind” in high school, and if a teacher asked the nurse if they’d seen me, our nurse would reply, “If you see a blur, that’s Danny.” (Danny was my name then, not now.) Remember all those marches, and I stood up to people. I never started a fight, but if one started and was unavoidable, I always finished it. (Hey, a tiny gay person in Nebraska in the nineties; was there any question I didn’t know how to defend myself?) I always stood my ground if someone tried to intimidate me, and I love kickboxing. My RA photo is me in the middle of a high kick.
Finally, my memory is scary; I remember everything. Like what someone was wearing, how things smelled, the weather, and dialogue word by word from any given day. (80% of days, not 100%, but still.) Friends call me their personal Carfax, asking me things from years prior, while my partner complains that they can never win an argument because I remember everything. Can I receive a bonus check mark, please?
I’m the opposite of what others expect from someone with a TBI. Yet, I’m the person who lives with the fallout. I don’t know how many brain surgeries I’ve had because I stopped counting. I have a ventriculoperitoneal (VP) shunt due to Hydrocephalus, which I developed because of my TBI. My brain doesn’t drain my cerebrospinal fluid, putting pressure on my brain. My shunt breaks at the worst times, like the day one of my aunts died and the day before my graduate school admissions test. Of course, I still took that exam, but I was all doped up.
When my shunt breaks, the pain is so overwhelming that my nervous system is overloaded, and I lose faculties such as speaking or moving. More functions follow, such as my heart’s beat, pressure in my lungs, and difficulty breathing. My body goes into a medical triad, which means I don’t get time. Rarely will I have 48 hours. Sometimes, I have a few hours. Most of the time, less than an hour, less than thirty minutes. I’m fine at 9:00 and on the floor at 9:00. There is no warning, and the pain is like aliens beating my skull from the inside out, but I’m forced to stay awake without medications to monitor where I’m at. I usually pass gunshot wound victims. I live with this faint background bracing of, “Will it break today?”
My shunt rules my life in ways people can’t grasp. I have a syndrome where my shunt will appear to be working on the scans used to detect a malfunction. I turned down an Ivy League school with an amazing creative writing program that offered me a significant scholarship because I needed to stay close to my surgeon because he “knew me.” I need to vet and know where to go and who to contact if my shunt breaks while traveling because it has. Air pressure and weather fronts can simulate shunt headaches, causing debilitating pain; airplanes are hell.
But you appear like anyone else, even if you’re not always treated like everyone else. People who don’t know me treat me like a bomb about to lash out when approached or confronted. Even therapists will tell people I know “to understand that” and “be careful,” while people who know me say I’m the most grounded person they know. As soon as someone finds out about my TBIs, I’m different.
People with TBIs who check off some things I don’t aren’t inferior to me, but they aren’t me, and I’m not them. I don’t live to prove something; I’m just competitive by nature. I always need to do something just to do it, nothing more. Like me, people with TBIs shouldn’t be expected to fit into boxes. There may be a checklist, but even if everything is neatly checked, there’s still a great deal of mess. We’re people. We’re, including me, messy.
Three months after I received my master’s, I fell and fractured my skull with a bleed (my original TBI was also a “catastrophic” brain bleed caused by someone shaking me when I was six months old). While I have another medical condition, which causes progressive hearing loss, this skull fracture made it plummet off a cliff. I rely on closed captions on my phone in real time to communicate. It meant my plans to teach college creative writing courses went up in smoke, so I started a business as a developmental editor for books, which went on to win awards. I continue to work as a developmental editor for authors, including those who self-publish, those seeking representation, and those whose publishing houses outsource.
I’ve expanded my business over the last fifteen years. I assist prospective college and post-graduate students, medical school applicants, and those applying for competitive residency programs, national and international, with their admissions essays. Ironically, most of my clients are applying for medical school and/or medical residencies and promotions after graduating. I’m also a business consultant, ghostwriter, life coach, patient advocate, teacher, and hospital educator. I’m not limited; I’m unlimited. Technically, I might not have thought of these things if I hadn’t fractured my skull. How about that?
Don’t put people with TBIs in boxes or assume things because they have one (or more). No preconceived notions. I’m no better than someone with a TBI. I’m not luckier. I’m just someone. Don’t assume I am or will do certain things because of it, and respect, as I do, others with TBIs whose abilities are different are just that, different. Abilities are a situation or circumstances. They’re not people.
As this month comes to an end, I want to wish everyone a Happy Traumatic Brain Injury Month and a shoutout to everyone out there living with a TBI. I hope you made this month yours.