Surviving TBI for 5 years
Five years ago today, I fell to the ground. Hard.
My life changed in an instant, but I don’t remember it. From a few minutes before, to a day or two later, no memories.
Instead, I awoke cheerful. I was in pain, but it was just physical. I was injured, but that’s normal for an athlete. I had so much confidence that I would just bounce back.
I’d follow the same playbook that I’d seen my friends go through on social media — it would start off pretty bleak, but I’d persevere, stick with my PT, push it a little faster than my doctors wanted, soak up some likes on the pictures I posted illustrating my progress, and have a killer comeback story when I returned. It would be #inspiring. This was my unshakable belief.
Only, there were these weird tubes sprouting out of the back of my head. What was up with those?
And why was my mom visiting, anyway? Wasn’t she supposed to be in New Mexico? And what were my friends from out of town doing there? And my ex?
I told them all how excited I was about how I’d done on American Ninja Warrior. They exchanged looks. I paid no mind to it.
Speaking of ninja warrior, where did the camera crew and producers go? Hadn’t they just been with us for the backstory shoot when it happened?
There was no single moment when I gained a full appreciation of what happened to me. This was a mercy, because what happened was gory and awful.
Instead, I learned about it from friends and family, and from the 16 different medical specialists I visited over the following two years. Unexpected and horrifying, I also saw parts of my own accident played on TV. But mostly, I learned from an exhaustive exploration of my own body and mind. A detailed accounting of what skills were dampened, and what I could improve.
It is difficult, even after five years, to summarize my accident. It was a severe traumatic brain injury. I was given only a few percent chance of survival, let alone a full physical and cognitive recovery. I saw horrors during that time, and lived through some myself.
One memory that sticks out to me was a waiting room for a surgical followup. This was no ordinary surgeon’s office, it was a neurosurgeon. So when I sat down with a head that looked like a baseball, I didn’t get a second glance from anyone. I sat near a man who was there with his caretaker, seated before a walker and wearing a helmet. Of all these things — the caretaker, the walker, and the helmet — the helmet was the thing that made my stomach lurch. Not because it reminded me that wearing one would have prevented my injury — though I’ve thought about that countless times. No, it was because in a neurosurgeon’s office, wearing a helmet means they left out part of your skull when they stitched you back up, to prevent any swelling from squeezing your brain and re-injuring or killing you. It meant he had it worse than I did — possibly far worse. The man wept openly, and his caretaker continued to read her magazine. He had a long road ahead of him. I hope he made it.
By contrast, my recovery was miraculous, by all accounts. They thought I’d die, but I didn’t. Then they weren’t sure if I’d be able to see, but I could. They thought I’d be in the ICU for months, but I was out of the hospital in about a week.
This is not to say it was easy. Anything but. I failed to draw a clock correctly. My hands were clumsy and inarticulate. I walked into things, and lost my balance. I dumped a full glass of milk on my lap when I first tried to drink without a sippy cup. Divided attention was harder than usual. I was quick to anger. I couldn’t smell (still can’t). I looked like a skeleton, could barely walk, my tailbone was broken so I couldn’t sit, and my head hurt so much I couldn’t sleep. Laying down hurt because the back of my head was a zipper. Often, I cried.
But my community had my back. My mom, who works 7 days a week as a small business owner, dropped everything to come take care of me. My sister kept our mom’s company afloat during that time, which I knew was its own act of love and support for me. Family friends I hadn’t spoken to in years stopped boarding their flight for vacation to come help me in the hospital. Others flew in to help. MIT was fantastic, allowing me to continue at whatever pace I could muster and drop whatever classes I need to with no consequence. They even put us up in an apartment with an elevator that was right near MIT Medical. My living group tried to cover my rent for that semester. Friends visited all the time, including an MIT staff member who visited every single day.
Gradually, I improved. Not fast enough to finish the season of American Ninja Warrior — that was a fantasy. But quickly enough to shock some doctors and satisfy some ever-competitive part of myself.
At some point they took my sutures out, and it was like unlacing a baseball. Ow. Some time after that, I convinced my mom to go home.
And then the real work began.
My doctors had told me “it’s a marathon, not a sprint,” but I didn’t believe them. My life experience had taught me that I could out-work and out-smart or out-talent most problems I’d faced. (Usually academic ones, because I was healthy and privileged.) But severe traumatic brain injury was a new kind of enemy. Working harder could just drive up the headaches — but shying away from the headaches could slow recovery.
Worse, I continued to look better — my hair grew back, and I put back on some weight I’d lost in the hospital — but not necessarily feel better. So I began to experience TBI as an invisible injury.
When you’re injured in a visible way, people know how to show up for you. But when your issue is invisible — maybe similar to severe depression or anxiety, though I won’t assume since I’ve yet to face those foes myself — it isn’t as clear to people how to come help you out. Should they ask about it? Should they not ask? The confusion reduces turnout overall. All of a sudden, I was facing 80% of the challenges as before, but with 20% of the support. It got tough.
Dear reader, you may tire of hearing about the myriad challenges of my injury. Perhaps I belabor the point. But if there’s one thing you internalize before turning away from my meandering article, remember this — an internal injury is no less difficult, and no less support-worthy than a visible one. If your friend has a TBI, show up for them. Offer a couple ideas of how you can help, or just come visit and say hi. Set a reminder on your calendar and visit in a couple weeks. Do something nice for their caretaker. Don’t worry about doing the wrong thing, they won’t care that much. The effort will come through.
There was one day when I had to leave a playwriting class because it was getting too loud, and my headaches were getting worse. My exit was somewhat obtrusive, since the door was right next to the stage — I had literally made a scene. I laid down on a couch just outside, and thought of how awkward it was to leave at that point. Of how I created a burden for those around me in general, and a very heavy one for those close to me. I then had a very dark thought indeed — I thought of how the best thing for them would be to remove myself from the equation.
But then, at that moment, another part of me stepped in. A new voice, one of firm resolve and unwavering compassion, said no. I would not remove myself from any equation. However broken I may be, I deserved to live. This was the voice of resilience.
This voice came from the MIT staff member who visited me every day, even after other friends started assuming I was ok. It came from when I saw my mom crying looking out the window and I realized she’d almost lost a son but she was pushing through.
But it also came from me. My resilience was not a latent ability; I’d created it. This may sound paradoxical, but I was not someone who could survive severe TBI before I survived severe TBI. I became that person who could survive, by surviving.
Since then, I’ve had a good five years. Really four years. As you’ve heard, the first was pretty terrible but I got through it.
I graduated MIT. Wow, that felt good. I met someone I really liked, and we dated for a while. I got a job, and recently I got promoted. I climbed Stand and Deliver, a hard boulder problem. I visited the Himalayas. I ran a marathon for my 26.2th birthday. I got pretty good at coding. I got pretty ok at surfing. I won a hackathon, and I’m turning it into a company.
It wasn’t about these gold-star things, though. It just feels good to live.
I wrote this whole damn blog post with a headache, but I’ll say it again — it feels really good to live.