Amanda Burrill

Conducted and Transcribed By: Raisa Alam CC’21 and Claire Shubeck CC’23, Operations Team of Columbia Synapse

Although she is a travel writer herself, Amanda Burrill says, “It is almost like I continue to bury the lead on myself. It takes a certain amount of bravery to share your story. To not be afraid has been refreshing for me.” We are very grateful that Burrill felt comfortable sharing her experiences with traumatic brain injury. Follow her on Instagram: https://www.instagram.com/amandauncharted/?hl=en @amandauncharted

My name is Amanda Burrill and I am a part-time journalist: Much of my time is still devoted to my health. I have experienced two traumatic brain injuries; in 2003 while deployed in the military and in a 2014 accident. I advocate for traumatic brain injury because of how my 2003 injury was misdiagnosed as several mental health illnesses. Similarly, my 2014 injury was not taken seriously until scans were taken that proved physical injury. It took a while to find a support system that understood my condition and medical providers as motivated and optimistic as I was about recovery. My outpatient rehabilitation for vision, balance, cognition and most surgeries were done at NYU. Stopping my life at age 35 to dedicate over a year to recovery was a mental struggle. Each day, even now, is affected by brain injury, such as difficulty listening and discerning spaces between words, finding my own words, and struggling with fine motor control. I’m still in some therapies years later but there’s a big silver lining to all this: I wouldn’t be the person I am today without the injury and associated struggles. I approach my athletic endeavors knowing I’ve already done the hardest thing: Recovery.

For those going through similar experiences, I recommend finding a team that welcomes your questions and works together across specialties, as brain injury sequelae is so integrative. Patients often have a tough learning curve in understanding brain injury and the effort involved in recovery, but always remember that it gets better. As a female reporting physical injuries no one could see, and not getting help right away, I’ve seen firsthand how women are stigmatized as emotional and attention-seeking. Be assertive and be a self-advocate. Believe in and be kind to yourself. Neuroplasticity is real, but it’s not a spontaneous process: It must be assisted by dedicated doctors, supportive friends and family, and a resilient patient

When and how did the injury occur?

My injury is a thing of legend because I have had two traumatic brain injuries. The first one happened while I was deployed in 2003 to Iraq. It was my first deployment as a Naval Officer. I was found unconscious at the bottom of a hatch, but it was not treated as a traumatic brain injury. The second traumatic brain injury I had happened in 2014. It was my last semester getting my master's at Columbia. I fell down a flight of stairs. I maintained my footing, but staggered across the landing and smashed my head. The first one was later determined to have been severe. The second one was moderate

What was your experience with the diagnosis of your injury?

My experience with diagnosis is the bread and butter of my advocacy. My 2003 injury was misdiagnosed because I got many migraines. This led to me being discharged from the military honorably but with a diagnosis of mental health issues. To me, it is a very important advocacy piece because I think that happens to a lot of people. For better or worse, I always say thankfully, I had the second brain injury. Because of the damage to my neck and my jaw and my arm, it was treated more like a brain injury and I was able to get my hands on these scans. But because I still looked fine on the outside, I had a lot of trouble being taken seriously at first. When those scans and neuropsych testing results started coming back, it was oh geez, slam dunk, this is brain injury.

How did you feel when you were given each of your prognoses?

“I was given several mental health diagnoses for PTSD, depression, anxiety, ADHD”

Back when I was first reporting my symptoms, I was still in active duty. I was repeatedly told that I was coming across as a hypochondriac and that I needed to slow my roll with all these “complaints,” which I did because I didn't want to lose my job. When I left the military, I was given several mental health diagnoses for PTSD, depression, anxiety, ADHD, and I had insisted that I didn't think this was what I had. I was prescribed medications. It became an area of contention whenever I'd go into the Veterans Hospital and say, “Hey, none of these meds are helping. I don't think that this is my problem.” I had all this motivation to figure out what was wrong, but I was not even remotely aware that I could be suffering from brain injury. I thought that I might have an underlying disease actually. And then, of course, I suggested this, and I had all these diagnoses that were very difficult to overcome. After I had a second brain injury, it started to become clear even though I was confused. I had had this head injury, but I was acting quite normal. I was explaining these lights and flashes, and somebody finally started putting all this together. I was told, “Okay, beyond the shadow of a doubt, this has to be brain injury. We want you to take all this neuropsych testing.” Then we went over all those results, finding out that I was in the 99th percentile in so many things. And then there were these six areas of cognition where I fell at the bottom fifth percentile of people. And that just makes no sense unless we're talking about brain damage. I felt a great deal of relief. Of course, in my mind, it was kind of like a broken bone: we mend this and I just move on–yay, jazz hands. So as it became more and more clear that it wasn't going to be a quick fix, I was very discouraged. This is what led me to getting into advocacy: reflecting back on the fact that for years, I had been told I had mental health issues when I didn’t and of course that becomes nuanced over time there. And it comes back to me, saying, without a doubt, the most important thing is if somebody does get hurt, that they get help right away.

Who did you have as a support system?

For my recovery, it took a while to grow a support system because there was a period of me having to get rid of people who weren't supporting me or weren't believing me. And you know, it's one thing when you don't get that belief from medical providers, but it's totally another, when your friends and your family even start to doubt you: “There's always an excuse. You never want to hang out.” What I did first was to build a team that had my level of ambition that I would get better. I had been told that this is how it is and some things will get better, but this is going to affect you for the rest of your life, which I don’t doubt. But there was a lot of resignation amongst some of my providers and I ended up going on Medicaid, because the VA was just not giving me the care I needed. But I eventually started to build support, mostly through the providers that I chose to keep on my team because they shared the same belief of hopefulness. Then over time, the right friends understood that I wasn't going to be hanging out all the time, and they're the ones who would come visit me or bring their kids over. It really turned into a sit down with family as well, like, “Hey, this is what's going on with me. And I know that you don't understand it or it doesn't seem like it. But please understand.” And those who wanted to understand and be the cheerleaders and know that I was doing my best to serve them became my support system.

Did/do you feel supported by the medical/science community?

I feel that one of my places in speaking out about traumatic brain injury is to say that modern medicine is excellent for injuries that are trauma, like getting hit by a car. Now, when you've had a traumatic brain injury, in my case where I didn't understand what I had for so long, it gets wrapped up in some other neurological issues, or nerve damage and mental health issues creep in from not being heard, and it becomes a different ballgame because modern medicine is so geared towards symptoms. I always joke around that I'm a bit of a hippie these days because I study a lot of integrative medicine and functional medicine. I have a team of gastroenterologists. I have a team of neurologists, I have the sports medicine doctors, and they don't necessarily all communicate with each other. I wish they would. I listen to so many podcasts. I'm trying to find people who are interested in this stuff. I reach out to therapists and craniosacral therapists. I study concussion and brain injury and I have so much broad integrative knowledge. Have you ever heard of POTS-postural orthostatic tachycardia syndrome? It's basically when the message from your brain to your blood vessels to constrict is weak. So when I stand up, unless I'm very well hydrated, the blood likes to pool in my legs and then I get lightheaded and I might faint. I had to study all this, and then I went back to the VA and was like, “Hey, you got a lot of people around here with brain injury, maybe they're suffering from the same problem I have,” because I was fainting all the time. I went from a healthy woman or a girl to somebody who had a whole bunch of problems. So I see that different medical disciplines are connected, but you really have to self advocate to get others to see that.

How did you feel during your recovery?

“It became incredibly important for me to take care of my mental health during that time”

While I was in rehabilitation for that second TBI which essentially was also rehabilitation for the first TBI because I hadn't had any rehab, I did my rehab full time but I was outpatient. I would go into NYU Rusk Rehab, and it was balance, speech, vision, and cognitive rehab. And then I had the associated surgeries. To stop my life at age 35, and spend over a year dedicating myself fully to this process and also juggle the mental stressors that come with that–you know, these are the years that I'm supposed to start a family. I'm supposed to be banking a lot of money–that was really, really difficult. It became incredibly important for me to take care of my mental health during that time, where ironically, for so many years I'd been told it was mental health issues when my underlying problem was a physical injury. During this rehabilitation, I was starting to understand the gravity of what had really happened to me and that I had been living my adult life with this other brain. That was really tough to accept and that's when meditation and self reflection and the big guns on being strong and finding mental health care and talking to a therapist really helps.

How has living with a brain injury affected your life?

Every single day is affected by brain injury. For me, it's subtle things. And it's funny to be able to correlate these with my areas of brain damage. But, for example, it's very difficult for me to discern the spaces between words. So it's very helpful if I'm watching somebody speak or if I'm watching TV. It's really difficult unless I'm staring and I can see lips moving. And so that's a function of speech broadly. Motor control is also something I struggle with. Especially my arms, my hands, where I knocked over a lot of glasses of water. And dexterity is a big issue every single day I would say almost every hour. I can't help but question when I don't understand something or when I get turned around. You know I used to drive a ship around the world, but now I get confused in my home city. I can't help but wonder if it has something to do with brain injury whenever I struggle. I think that that's becoming more of a like being Zen about it and accepting that this is how it's going to be and I can always work to make it better, but this is how it is right now.

Are there any positives that have come out of this experience?

There are silver linings to my experience with brain injury and to be honest, I don't think I would be the person I am today had I not gone through this. As I see it, I climb a lot of things and I do a lot of athletic things and I used to just run and was obsessed with running, but I really see it as something that I went through. That was incredibly hard, not just the rehab, but the living brain injury before I knew what it was. I can't imagine anything harder. So when I approached one of these athletic endeavors, I went into it, knowing in my heart that I already did the hardest thing I've ever done and so I know I can do it. The other silver lining and I thought about this while I was in rehab, I didn't even know what the word advocacy meant. But I understood there was this. I can use this to help other people. I know it's not just because I'm a veteran. There are people out there who have hurt their heads, and they're struggling and they're not putting the team together. And that was me for so long. And it's fired me to be vocal about what I've been through because I know it can help someone else.

What would you have improved about your experience with the medical community?

Beyond childhood, the thing that I saw that needs improvement is that when you have an invisible injury, it is very easy for modern medicine to immediately go down a mental health road. That is probably part of it when you have an invisible injury, but exploring the physical on the side of medical practitioners. Another thing that I witnessed was I felt that as a female reporting a bunch of physical symptoms, it was very easy to jump to this. I left the military with a PTSD diagnosis, even though I didn't have a specific trauma. I couldn't name a specific trauma. They had this idea that women are emotional, and there's data out there that reports women are almost twice as likely to leave their first doctor's appointment with a mental health diagnosis. I think these sorts of issues and the idea of treating symptoms with medicine as opposed to looking for the underlying cause and really addressing it needs to change. The school of thought is growing, but it can't happen fast enough for the person who's suffering.

Do you have any advice for other people with brain injuries/concussions?

I have so much advice for people with concussions. The first is as hard as it is in the moment: to know that it gets better. It is so difficult to just hear that it can go easily in one ear and out the other. It did for me, but the first thing is, it does get better. And two: If you're not satisfied with the answers you're getting or your team, ask more questions and find a new team. I have had several iterations of my team before I felt satisfied. And it's a really tough learning curve because the very nature of brain injury is you don't always understand. But It's important to know that you have a set amount of time. I was never going to have a doctor quit his job and be like my researcher or figure all of this stuff out, so you have to put a lot in yourself. But surrounding yourself with good people is what makes that hypotenuse from injury to feeling better that much more of a straight line.

Do you have any advice for those trying to learn more or research about brain injury?

Once I got my vision back online, I started to dive into the internet. PubMed is always interesting. I have found that searching specific key words like searching integrative medicine or searching for functional medicine, you can dive deeper. All the information is out there, but it's just very difficult to sift through what might be useful and what might not be. I have an Instagram where I have a group and we've all had TBI or concussion, and we chat about what we've learned. That's why I think a group like Columbia Synapse is important because talking to somebody who's still struggling about your experience is going to help them and result in reflections and revelations.

Bonus Clip

Synapse ColumbiaJuly 5, 2020