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Learning to Advocate for Myself With Post-Concussion Syndrome

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I never expected to be where I am. At this point in my life, I thought I’d have graduated from UC Davis with two degrees in political science and international relations, with a 4.0 of course. I thought I’d keep my equestrian career going. I had big plans, but it was never in my plan to be singing and laughing in the car one minute and be bloodied on the concrete the next.

Movies aren’t supposed to be realistic. You know when the world is ending in those superhero movies and everything is suddenly in slow motion and there’s that high pitch whine in the background? Those moments when your ears start to ring and you feel the anxiety of what if there is no coming back from this? Then there’s the one person who swoops in and saves the protagonist and the world is all right again?

Part of that mirrors reality when you get into a car accident, but, in reality, nobody comes to save you. I mean physically, sure, EMTs rush to your side, asking a million questions about where your pain is, bystanders watch you stumble around, with a bloody face and only one shoe on, firefighters rush to your friend crying from inside the car, ambulances wail, people gasp, police officers interrogate, and you get strapped down and loaded into an ambulance all with that high pitch whine and that feeling that the world is about to end. Life is fragmented. Memories are fragmented. But while doctors and nurses can heal your outer breaks and bruises, nobody will save you from the worst that has yet to manifest itself, the traumatic brain injury lurking behind your visible injuries.

“She’s just had her bell rung… She’ll be fine in a few days. Be sure to darken the room!” These words haunt me as someone with a prolonged concussion, otherwise known as post-concussion syndrome (PCS). A few days came and went. A few months came and went. And now a few years have come and gone. I was not fine in a few days. A dark room and no TV did not and could not fix my broken synapses and brain pathways.

In my experience, post-concussion syndrome consumes you. Every fiber of your being is touched by the pain, the anxiety, the depression, the sleeplessness, the aphasia. Just like that, my life was shattered. I dropped out of college, I was not able to ride my horse, I couldn’t even walk down a hallway without extreme dizziness and nausea. Just like that, my plans blew up in my face.

Doctor after doctor, referral after referral, I passed every neurologic exam. Well, except for the one where I had to draw an old-fashioned clock with a specific time, but I’m a Gen Z-Millennial cusp — when have I ever had to tell the time on one of those? But I still had daily excruciating headaches, constant brain fog, and monthly migraines.

I tried everything to manage my symptoms. I went through three different antidepressants. I tried anti-seizure medications. I did magnetic therapy. I tried nearly every form of physical therapy there was — vestibular, cognitive, neck. I even got 28 Botox injections in my face, head, and neck every three months to treat my migraines; and yes, it helped the worry line on my forehead, but it didn’t help my migraines and it made my eyebrows uneven.

The issue I faced, and far too many in my position face, is the lack of coordinated care, lack of knowledge about PCS, and the lack of empathetic medical professionals. I was bounced from one doctor to another, and each one told me they could fix me until they exhausted every option they knew of and gave up. One doctor even told me I made it up and was “just depressed,” as if there is even “just depressed.” He sent me to a psychiatrist who rebutted that with a resounding “no, you’re not depressed, you have PCS and a dash of post-traumatic stress disorder.” So my life boiled down to the alphabet soup of the PCSs, the PTSDs, and more recently the PTVS (post-trauma vision syndrome) for years.

I was told something different by every doctor I went to. The only thing anyone could agree on was to shrug their shoulders and wash their hands of the “difficult patient” and tell me to just wait it out. But how can you just wait out such an earth-shattering thing as losing brain function? Your brain is who you are. You spend your whole life crafting the person that you are through experiences. All of your personality, your defining traits, even how you move are stored in the brain. So when you shake that a little too hard, you lose that person who was so carefully crafted. I had to mourn the death of myself while I was still alive. So how can anyone expect that to just go away one day? How can any trained medical professional really believe that just because you cannot see an injury, it’s not there?

I learned the hard way that no one is in your corner except you. No one can advocate for you except you. I thought I was “crazy.” I questioned whether each symptom was enough for a doctor to finally take me seriously. I did not believe what my body was telling me, that I was seriously injured. And then I got sick of not being believed. My body was fighting me, my brain was fighting me, and the professionals who were supposed to help me were fighting me. I knew something was wrong so I put my foot down. I learned to say “No,” how to ask for the pain management I needed, how to get a doctor to take me seriously. This was me finding my voice and taking back the power I thought my trauma and brain injury took from me. I learned to have confidence in my experiences and speak up.

When I first got hurt, I scoured the internet for people who understood what I was going through, for some kind of sign that my pain was valid and real. So if that’s you, what you are feeling is very real. You know your body and if something feels wrong or hurt or sick, it is. Listen to yourself. Advocate for yourself. You are worth it.

I never expected to be where I am today, but I couldn’t be happier. I have my dream job helping protect wild horses across the American West, I have the most amazing little rescue dog, and an incredibly loving support system. I’m back in college. I still have setbacks five years later, but thanks to a treatment center in Utah I finally have a coordinated care team who takes my injury and pain seriously. Through these experiences, I have taken back control of an invisible enemy, my traumatic brain injury. I learned to listen to my body and to advocate for myself and for that I am forever grateful.

Getty image by Madhourse.

Originally published: November 12, 2021
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