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My Invisible Struggle With Post-Concussion Syndrome

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The car had come of nowhere, and so did my concussion. A week after the car accident, I started doing exceedingly odd things — putting on two different pairs of shoes and walking out of the house completely unaware, trying to take a sip of water and pouring all of it down the front of my shirt, struggling to get words out of my mouth and hold a conversation, and my favorite, folding my laundry and putting it in the fridge and then going into a frenzy of worry when I couldn’t find my clothes. As I was to learn later, brain injuries don’t always make themselves apparent in the minutes or hours after an accident; some of them are delayed-onset, which was the case for me.

To hear the words “traumatic brain injury” (TBI) from my neurologist when my EEG came back abnormal felt surreal and rather dramatic. Brain injuries are things that happen to athletes and people on “America’s Funniest Home Videos,” not highly motivated people in their 20s, right? Right? Clearly not. The doctor said, “Don’t worry, brain injuries normally clear up in two months; you’ll be fine.” As I write, I just passed the year mark of my accident and am still in the full throes of post-concussion syndrome.

Turns out, post-concussion syndrome can linger for months or years after a TBI occurs, characterized by continuing symptoms of a concussion even after your injury has healed. As both a writer and an enthusiastic participant in all things social, it was devastating to come to terms with continuing to struggle and search for the word I want to use, eyes closed, forgetting what I was even talking about in the first place. That I leave projects half finished because I forgot I was doing them, my kitchen table a memorial for good intentions and the inability to follow through. I lost friends because I couldn’t remember birthdays, had to turn down job opportunities because I needed to be close to my doctors, and missed event after event because of chronic pain and fatigue.

Since that day when my neurologist casually threw out the TBI diagnosis, I have learned what it’s like to live with a disability people can’t see and most people don’t understand, and the grief of having to let go of your expectations to prioritize your recovery. It is hugely intimidating to face the world with limitations that are not obvious. You can’t see a TBI; its invisible nature makes the suffering it causes more acute. Most people are happy to accommodate you when you are on crutches or are wearing a cast, but are less patient when it takes you extra time at the cash register at the grocery store because you suddenly can’t remember your pin number. I struggled with whether I should explain why things are harder for me, to win myself a little grace when my cognition couldn’t keep up with the task at hand. But then again, I was frustrated with myself for feeling the need to justify myself to others. When the accident happened, I was applying to graduate school; needless to say my application essays were less than ideal. The TBI upset my life trajectory; as anyone with a bad diagnosis knows, it is a special kind of grief when you have to let go of what you had hoped for in your life.

Struggling with the loss of my cognitive abilities, exciting opportunities and close friends has helped me look at other people in a new way. Now when I see people at the grocery store or at the gym, I recognize the bravery it takes for many people to even show up, remembering the vulnerability I feel when I leave the house to social interactions that may discourage me. For many, running even one errand is a huge accomplishment. Many people who look healthy on the outside are struggling with chronic pain or an invisible disability, are reeling from a huge loss, or are trying to cope with a devastating diagnosis. My TBI took the blinders off that kept me from considering the silent suffering of others. When our default mode can be to judge others or be unforgiving of ourselves, it is a radical act to switch from performance mode to a life of celebrating progress and compassion. Whether you are working toward recovery or your invisible disability proves a more far-reaching challenge, I recognize your silent struggle, I admire your courage and I commend you for every step you take.

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Getty image by Marjan Apostolovic.

Originally published: January 8, 2018
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