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I Want to Shed Light on My Life With a Traumatic Brain Injury

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According to the CDC, a traumatic brain injury or TBI “is caused by a bump, blow or jolt to the head or a penetrating head injury that disrupts the normal function of the brain… The severity of a TBI may range from ‘mild’ (i.e., a brief change in mental status or consciousness) to ‘severe’ (i.e., an extended period of unconsciousness or memory loss after the injury).”

I received my TBI when on January 1, 1997, I fell out of a third-story window and my head slammed on the concrete below. My skull wasn’t the only thing to break. I also sustained a compound fracture of my left femur, broke both my wrists, my right elbow, my left hip, my jaw, my nose, burst my sinuses, right ear drum and permanently damaged nerves that have left me with facial palsy and chronic paresthesia.

I spent two months in the hospital and the greater part of the following year in rehabilitation. Surgery, therapy and time healed what could be fixed. I adapted and learned to live with most of what couldn’t. It has been almost 20 years since that fateful night, yet at times, I am still a stranger to myself and to many of those who knew me before.

The once fearless girl who bought a one-way ticket from New York to San Francisco with only $2,500 in her pocket, without a job or even a place to live, is now often afraid of leaving her small suburban town. Confidence has been replaced with self-doubt, reservation with impulsivity, carefree with depression, self-control with emotions that are hard to control.

Because TBI is an invisible disability, it can get overlooked or misdiagnosed. Symptoms can include memory loss, forgetfulness, lack of focus, lack of coordination, difficulty with multi-tasking and extreme fatigue. TBI can affect control of emotions so feelings of happiness, sadness, anger, fear, excitement and passion might all become extreme. And according to the LA Times, a study of older military veterans found that those with TBI are more likely to develop dementia and Alzheimer’s as they age.

I was determined not to let my TBI prevent me from living my life. I swore I would never use it as an excuse for why I couldn’t do something. No matter what, I was not going to give up. It became my crusade.

At first I thought if I ignored my TBI, it would “go away.” After all, TBI is invisible. If I don’t tell people I have it, they won’t know, and then it won’t be an issue. When that didn’t work, I thought I would just cover up my problems with medication and alcohol. But that actually made it a lot worse. So I decided to go on a quest for a cure.

I scoured the internet. I reached out to doctors all around the world. I spent thousands of dollars on new medications, holistic therapies, experimental techniques, I even got myself into a clinical trial. Some things worked for a little while, but I always ended up back to where I started from, trying to face life with a disability. All in all, I failed to do the one thing that would have allowed me to have a “normal” life: to accept my disability for what it was — a disability — and to adapt my everyday life to my new normal.

The journey I have been on to reach this moment of clarity has been long and hard. I lost friends because I was angry they didn’t accept me for who I now was, a person struggling with a traumatic brain injury. But how could I expect them to accept me when I refused to accept myself? This is the reality of a traumatic brain injury for me — it changed me, it changed how I behave, how I react, how I think. It changed how I perceive reality because my brain is my reality. I have been asked hundreds of times, “Is this you talking or your TBI talking?” or “Did you do that or did your TBI do that?” The answers to those questions are both yes because my TBI is who I am.

I can’t change the past. I can’t change what happened to me or to the millions of others who live with a TBI. But hopefully, I can change how society sees us. Hopefully, I can shed some light on what my life as a traumatic brain injury survivor is actually like, and by doing so, help bring a little more understanding and acceptance to this invisible disability.

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Originally published: November 29, 2016
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