I Suffered From 2 Traumatic Brain Injuries—but It Took 13 Years to Get a Diagnosis

Amanda Burrill is a Navy vet who served as a rescue swimmer and combat systems officer on two tours aboard the USS Dubuque. She's also one of the thousands of military service members diagnosed with a traumatic brain injury. While not all TBIs are the same, her experience—shared here in her own words—offers a window into what it's like, including how difficult it can be to get the right treatment. Keep reading for her story.

I pin my race bib to my red Relay for Heroes T-shirt and make my way over to the group of other women on my team. This isn't about winning. I have to keep reminding myself of that.

Honestly, the dozens of races under my belt were about winning—at least beating myself—and that mindset served me well, leading to sponsorships, brand endorsements, and two Runner's World covers. But I didn't sign up for this relay, where teams compete to finish as many miles as possible in 12 hours, to win or set a personal record. This one is all about the cause. My cause.

Did you know that roughly 400,000 military service members have been diagnosed with a traumatic brain injury (TBI) since 2000? And at least 20 percent of Iraq and Afghanistan veterans have post-traumatic stress disorder (PTSD) or depression, though only half seek some form of treatment? There are also those who tirelessly seek treatment but aren’t sure “for what.” These weren't statistics I was particularly interested in until I became one of them. I'm a 38-year-old Navy vet and have had not just one, but two brain injuries. (Lucky me, right?) And I'm here to tell you, getting treated for them was not easy. In fact, it was hell.

Which is why, now, I'm walking to the starting line with a newly refurbished spine and reconstructed foot, to compete—no, not compete, participate—in a race raising money for the Intrepid Fallen Heroes Fund, a national non-profit organization that commits 100 percent of all money raised to supporting American military personnel suffering from TBI and PTSD. It's amazing, actually, for me to look back and think about the long road that got me here in the first place.

My first fall

My dad was in the Navy and my mom is this fiery Vietnamese woman from Saigon, where she ran a nightclub. She was a refugee in Guam, then came to California where she met my dad. And then they moved to Maine, where I grew up.

I inherited my dad's military pride, and after I graduated high school, I enrolled in Boston University's Naval ROTC program. Shortly after graduation, when I was 23, I deployed. This was in 2003 and the Iraq war had started. Our ship was converted into a prison for POWs. Part of my job was to keep watch on the Iraqi prisoners overnight. I got off watch at 4 a.m. One morning, sometime around 6 a.m., someone found me passed out the deck.

I had no idea what happened or how I got there, nor do I remember the next three or so months. I don’t know if I fell or was hit. All I can tell you is what's in my medical records: That I suddenly started experiencing head and neck pain, and incessant coughing. A neurologist classified it as a “headache” and “tic syndrome,” and then sent me to a chiropractor to yank on my busted neck.

Someone found me passed out on the deck. I have no idea what happened or how I got there.

Weird things were happening. My vision became blurry, but I’d pass vision acuity tests. Reading was virtually impossible because I had to stop and rest my eyes so much. I couldn’t catch anything, including a Frisbee on the flight deck. It’s a complaint that recurs in my record—I was clearly upset that I couldn’t catch a damn Frisbee. My alcohol tolerance mysteriously plummeted to zero. I would sometimes pass out, especially after eating, and I’d occasionally wake up on the floor confused. “I must have fallen asleep while petting the dog.” We fill in whatever gaps we can. Additionally, I’d often wake up coughing and feeling suffocated. These are only the things I half-remember, though I’m sure there were more.

I kept as many of my health problems secret as I could, except to medical providers. In hindsight, it wasn’t just my military coworkers and medical providers working against me, making me feel like I had to tip-toe around the problems: We live in a world where women are labeled “overly sensitive,” “dramatic” and “emotional” if they speak up for themselves. Plus, I’d lost my ability to articulate scenarios and complex ideas like I used to. I could think them but not get the right information to my mouth. Because of that, I’d often opt to just not talk.

I was also trying to work my way up in my career. Not being able to read as efficiently as I once could made my collateral duty as an intelligence officer almost impossible, because I had to collect, read, and interpret information to create nightly briefs. To keep my secret, I begged to go to rescue swimmer school, and was eventually permitted. This was a notoriously hard school to get through and at least six guys on my ship failed. Thankfully, I passed. I firmly believe becoming a rescue swimmer saved me from being kicked out of the military because it drew attention away from my problems. At that time, if something was “off,” especially mentally, you simply got kicked out. And it helped that I was pretty damn athletic.

In fact, running—even just on the treadmill on the ship—was my refuge, the place where I felt fully myself, running even ten miles at a time on the rackety old machine we had onboard. The only problem was, my balance was now totally off. You know those cartoons of people flying off the treadmill? That was me on a regular basis. But it never deterred me. When I wasn't deployed, I would race regularly and only an act of God could keep me from my daily run. It gave me much-needed structure.

Seeking treatment, gaining trauma

Imagine years of asking people what is wrong with you when there are dozens of things wrong with you and none of it makes any sense. I was doing well enough at work and, I’ll be frank, the doctors I saw were either lazy, lacked knowledge, or thought I was making my symptoms up. There’s no other explanation for the lack of tests and scans. It doesn't help that the symptoms for a TBI vary from person to person—it's not like breaking a bone, where it's clear to see the problem.

As a result of all this, I was shuffled around from doc to doc, clinic to clinic, when I really belonged in a neurology ward. Not being heard is traumatizing, as is being accused of lying. I still deal with these problems almost daily in my quest for ongoing care.

The other major emotional challenge that came from my injury was that I lost my ability to connect with people. When I was in college, my boyfriend and I had eloped, but after that first brain injury, everything changed. When I came back, I had no feelings. I felt nothing for anyone. I was as honest as I could be in saying, “I can’t give you 100 percent and I don’t know why.” It's the worst part of how things unraveled—making life-changing decisions without clarity of mind, hurting others because of it, and going into a “just make it to tomorrow” mentality. I often think of that girl who nervously severed what could have been her best lifeline—someone who loved her—in exchange for some very lonely years.

Not being heard is traumatizing, as is being accused of lying. I still deal with these problems almost daily in my quest for ongoing care.

A while after my time commitment to the Navy was up, I took my fuzzy vision to culinary school, where I did well despite two crippling problems: lack of hand control when attempting precise knife cuts and an inability to study for written exams. I still made it through, as that’s what I do. I became interested in journalism and media while working at the LA Times' test kitchen. I went for it, next attending Columbia Graduate School of Journalism. I even landed a job at the New York Post sports section.

Yes, these accomplishments and jobs threw everyone further off the scent. My adaptability was also used against me, proof that nothing was wrong. I'll tell you my trick: I didn't read any books and mostly wrote first-person articles incorporating my point of view. That way, I didn't have to do research, also known as murder to my eyes and head. The whole time, I felt like a fraud, but all this strengthened my confidence in my ability to not only get through anything, but to also make it look easy. I own all of it.

I now understand why I never lasted long anywhere, leaving all those jobs before someone else beat me to it. One thing I consistently relied on was my running. My last marathon was destined to be my best, but it actually marked the end of my competitive running career. It was the 2015 Chicago Marathon, and at mile 18 I felt something in my foot crunch, almost like a collapse. I pulled over to the side and threw up. It hurt, a lot. I ran-walked-shuffled the next 8 miles and ended in 3 hours and 56 minutes. That was my last race. Well, until now.

My second fall—and how I got back up

My second brain injury was a relatively straightforward trip and fall, which had become a daily ritual as I stumbled through life. I went down some stairs, across a landing, and smashed the back of my head on the adjacent wall. I remember more surrounding that injury than the first, but the aftermath is also a blur. I am positive that I did report it to my primary care physician, because it is in my record.

After this “head bump,” my attention dwindled to nothing, and by that I mean I completely checked out. My neck and jaw ached all the time and my headaches got worse. But once again, the medical community didn't take my symptoms seriously. I saw flashes of light for several months, and later found out that I’d blown a hole in my retina and had surgery for it. Think about that. I smashed my head so hard I blew a hole in my retina, upon dilation the hole was missed, twice, and I was still being treated as a mental patient. This is enough to drive anyone "mental."

My doctors, the ones who could have made a difference, kept wanting to talk about PTSD. I showed some signs of trauma, but it certainly wasn’t because of war. My trauma was that I’d been struggling with so many symptoms and no one was helping me.

My best work to date was simply not quitting, finding the right people to listen, and getting some help.

Finally, thirteen years after my first TBI, a diagnosis that made a lot of sense came in early 2016: multiple traumatic brain injury. My best work to date was simply not quitting, finding the right people to listen, and getting some help. I got outside insurance, technically “insurance for poor people,” and thank goodness the state of New York has a program in place for poor people who have traumatic brain injury or post-concussive syndrome. I started going to vision therapy, vestibular and cognitive rehab. And I still have head therapy, two kinds: one that's attempting to get the fluids in my head to flow properly and a therapist.

Not everyone can live in a bubble of “confusion and running” for as long as I did. I am well aware that had I been properly treated from the start, I wouldn’t have the medical issues I have now. What I needed then and what many others need now is the National Intrepid Center of Excellence or one of the satellite Intrepid Spirit Centers, a place capable of a head-to-toe evaluation and comprehensive treatment. I know firsthand that holding on to the hope that things will get better is key. That's what inspired me to sign up to run Relay for Heroes.

The experience of just getting a proper diagnosis felt like navigating a long, dark tunnel where I had to will the light at the end. I certainly couldn’t see it. I want to help others realize it’s there and I need to start somewhere. I start with getting the word out on what I needed, but didn’t have access to.

So now, many surgeries later and my balance a little steadier, I take my first step. And I run.

As told to Emily Laurence

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