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Why Recovery Wasn't My Destination After a Traumatic Brain Injury

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A traumatic brain injury can bring with it a confusing barrage of physical, emotional and cognitive changes that affect the survivor deeply and personally. The simplest expression of this is when we say, “I don’t know who I am anymore.”

Not knowing who we are, also known as a loss of humanity, can have profound implications, manifesting itself as confusion, doubt and depression, and making our “recovery” that much more difficult. In my own situation, the hardships I encountered often left me thinking my life wasn’t worth living.

At the age of 19 I was busy developing my own personality: likes, dislikes and strengths. But my car accident and month-long coma seemed to obliterate everything I had been. Beyond the obvious: needing to learn how to walk, talk, tie my shoes and cut my food, etc., I lost the things I identified myself by, including my connection to the past; the events I could remember seemed to have happened to somebody else.

In school, I couldn’t remember material in class or understand simple humor. I was a loner. I would get panicked if people deviated from the plan — whatever plan. I would act impulsively, and I made jokes to change the subject when I couldn’t follow what was going on. People who didn’t know my circumstances would point out my ditzy behavior, and it wouldn’t even dawn on me that they were being mean. Late one night, walking down the street, I was mistaken for being drunk. Life was confusing and frustrating.

The fact that I was no longer who I used to be was apparently clear to my friends, most of whom became mere acquaintances. All this put me in a world of doubt and confusion where I felt less than human.

I saw that relearning the things I used to know so I could get back to the person I was would not restore my humanity and help me live a fulfilled life. I needed to be recharged with the goo, the stuff that makes us human — the beauty, passion, emotions and feelings that made life worth living. These were the elusive parts of life that would make me a person again.

Eventually, I came to the realization that I would need to start over as a human being so I could find my place in the world. I called this “resetting zero,” and I began experiencing life as new, with no expectations based on how things were in the past. I developed standards I would follow to guide my behavior — things like being respectful and honest. Basic stuff.

Recovery itself seemed to be a frustrating and never-ending quest to get back to where I used to be. I found I didn’t want to “recover,” or simply work to recapture what I had lost: I wanted to grow in my new skin. An integral part of resetting zero was accepting that “recovery” was not my destination, because I defined recovery as “getting back what I lost,” and I wanted more than that.

Instead of recovery, I chose the word discovery to describe my journey. I was a new person and I needed to be a brave explorer. Moving forward, I wanted adventures where I could discover my new likes, dislikes and different ways of being. In keeping with the idea of discovery, I took a a risk and lived 10 miles off campus in a little red cabin. We chopped wood for heat. There, on the coast of Maine, I discovered important parts of life I couldn’t learn in books.

I had to do something about the doubt that was crushing me, causing me to play it safe. I couldn’t commit. I wouldn’t decide. The simple answer was this: in order to erase the doubt, I had to find ways to trust and believe in myself by learning to appreciate small accomplishments. I needed to create a culture of success and learn to nurture the person I was becoming.

Lastly, I had to get beyond the brain injury control and make it so my brain injury wasn’t the boss of me. Blaming everything on “that damn brain injury” only gave it more power over me. I needed to learn to take a step away from my situation, so I could accept my brain injury and integrate it into my life. I did this in part by acknowledging that it wasn’t the source of all the bad things that happened to me. Instead, I looked for the benefits it had brought my way.

Feeling the “goo” and learning to be human in a way I never had been was the end game for what I had gone through. Starting in a place of despair and hopelessness, I learned that taking these four steps could make my life very different, exciting even, and the benefits of becoming human were the ultimate reward.

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Getty image by Ekely. 

Originally published: December 26, 2017
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