b'ing stigma-free

I was nervous.  Hitting the “send” button on an e-mail to my teammates would have a powerful impact on me.

Flash back to the day I got hit: I was a freshman, one of the starting central midfielders for Image Arleigha Cook playing soccer; The Hidden Pain of Brain Injurymy college soccer team, and it was at the end of the first half when I took a ball to the face at point blank range. After being escorted off the field, evaluated, and declared “concussed” by a trainer, my coach wanted me back on the field. He demanded that the trainer reevaluate me. A firm “no, she is concussed” from the soccer trainer sealed the deal. He was instantly angry at me – he would not look at me, even when I told him that I could not think straight and therefore couldn’t host a recruit overnight. To him my concussion was just a frustrating inconvenience and another reason we lost the game.

I sat staring at the e-mail I was about to send. To this day, it still hurts that he could not understand that I was in a daze, my vision blurred, and I had a deep headache.  These symptoms eventually acquired the label “Post-Concussion Syndrome.”

Before sitting down to compose this e-mail to my teammates, I told my coach I could not continue playing. My doctors and therapists had described the “unusual” way I was healing. Spring training was just around the corner. How could I run aggressively on the field when I was only allowed to walk for twenty minutes per day? I explained how I woke up with headaches, how I could not focus, how I had to train my eyes to learn to track objects again. My coach sat and listened. I started to cry, knowing that he could not possibly understand how I was feeling, because there was no way to for him to see how badly I was injured. He told me he supported me in my decision and that I would always be welcomed back, but I knew things had changed between us. I still felt the anger he had expressed the day I incurred my fourth and last concussion. He was no longer my coach and I was no longer one of his starting central midfielders. I left his office still in tears, disappointed in both myself for lacking a better explanation of my concussion, and my coach for making me feel like I was quitting for nothing.

I stopped thinking about it and clicked the “send” button.

The first reply came the following day. Though my teammates knew that I still couldn’t train with them, I hadn’t told them about the extent to which I had suffered; I didn’t think they would understand. My teammate said that she didn’t know I wasn’t completely recovered. She was oblivious to the fact that I was struggling.. I received my second and last response the day after that, in which another teammate stated that she supported my decision and hoped I recovered soon. She was also unaware of the severity of my condition – I hadn’t recovered in the eight months following my injury, whereas most people with concussions recover fully within a week to a month. The other 18 teammates never replied. Were they too angry, confused, or just not care enough to type a short e-mail acknowledging that I was leaving the team? Whatever the reason, I felt unimportant, abandoned, and alone. I couldn’t even make it for a few hours without a pounding headache, and my “second family” didn’t care at all to see me go or even sympathize with me. And on top of that, I couldn’t play the game I loved to help me get through it.

One of the many things that continue to bother me about traumatic brain injury is that there are no visible effects. Some days, I feel like I am an anomaly. I walk around campus feeling drastically different from the other college students who don’t have to worry about getting enough sleep, making sure my diet has a positive impact on my health, taking medications, seeing therapists, and planning my schedule so I have time to rest my brain. I don’t wear a cast or use crutches, so it can be easy for others to assume that I’m healthy because I look fine. I’ve even encountered people who think I’m making it up. However, I’ve decided that it’s okay for other people to feel that way. I’ve come to realize that being true to myself and trying the best I can with the resources I have is all I can do. It’s not worth wasting my energy worrying about what other people think. Strength has many different faces, and the one I put on every day is the will to face the hurt I feel living with Traumatic Brain Injury.

 

Image Arleigha Cook, guest blogger TBIArleigha Cook is a sophomore at Trinity College.  Growing up, she ran track and also played soccer for programs such as the Olympic Development Program, MAPLE, and the Super Y Program.  After her last concussion, collegiate soccer and track were no longer an option, so she turned her focus to speaking and writing with the intent to help and educate those around her about concussions and their effects. Read her blog here.  Arleigha recently declared an English major, and she hopes to enter the legal field with the goal of helping people who have been affected by Traumatic Brain Injury.

 


Red body with bandaidMarch is designated “Brain Injury Awareness Month.”  It certainly would seem that the public is more aware of brain injury, given famous cases that have made media history: in 2013 NFL player Ryan Freel committed suicide, diagnosed on autopsy with chronic traumatic encephalopathy (CTE) that was thought to be caused by multiple brain injuries; just before the 2011 Christmas holidays congresswoman Gabrielle Giffords was felled by a gunshot wound to the head and subsequently went public with her recovery and rehabilitation; in 2009 Natasha Richardson died following a “mild” brain injury suffered on the ski slopes; in January 2006, Bob Woodruff, recently appointed ABC news anchor, was hit by a roadside bomb in Iraq, dramatically changing his and his family’s lives in an instant.

Yet, these names are unique only by their familiarity. In fact, 2.4 million Americans sustain a brain injury each year. Traumatic causes include motor vehicle accidents, sports injuries, falls, assaults, and wounds by gunshot or other penetrating objects. Injury severity varies from an impact leaving the victim in either a vegetative or minimally conscious state without purposeful response, to relatively mild “concussion” that as a first incident is expected to resolve within 2-3 weeks leaving no residual traces. Yet, what do we think of individuals with residual brain injury effects?  Are they different than us, or like us – with a difference?

The stigma associated with brain injury varies, reflecting human bias. We want to “see” evidence of injury in order to believe it.  Yet, when we see it, do we relate to the person with compassion and acceptance?  For individuals with severe brain injury, evidence of injury is all too apparent. The head or face is disfigured by traces of stiches, a jagged scalp wound where surgery took place, an indentation in the skull where the bone was fractured and removed.  How many unblinking stares do these individuals endure because they look different? They have not asked you to look at them with curiosity, pity, or disdain. Their speech may be slurred; or their walking may be off-balance. They have not asked to be ridiculed by others or suspected of intoxication.

For individuals with mild brain injury (up to 80% of total injuries), the societal stigma is ironically different. The predominant effects of mild brain injury are cognitive and behavioral, rather than physical. These individuals may have difficulties with paying attention, remembering what was said to them, or knowing what to do or say in a social situation. For them, the “hidden” disability is the stigma, as they are judged to be stupid or inept without an understanding of the underlying cause.

As with all individuals who are different, those with brain injury appear in judgment before their peers, with resulting stigma that may render them somehow “less.” They are often isolated, lonely, and sad. It is important that others learn more about the person with the brain injury in the context of work, school, play, leisure, and intimacy so that the individual can maintain an active role in society, and ultimately, a sense of dignity.

Donna Langenbahn, PhD
Rusk Rehabilitation at NYU Langone Medical Center
New York, NY

LangenbahnDonna Langenbahn is Clinical Associate Professor of Rehabilitation Medicine at NYU School of Medicine and Associate Director of Psychology – Outpatient Services at Rusk Rehabilitation, NYU Langone Medical Center, New York, NY.  Her work comprises administrative, clinical, research, and teaching responsibilities.  Her clinical and research interests have included assessment, cognitive rehabilitation, and psychotherapy with individuals with acquired brain injury.  From 1991 through 2012, she was part of an NIH-funded Rusk research team exploring the treatment of deficits in problem-solving following acquired brain injury.  Along with other responsibilities, she currently conducts an intern seminar on cognitive rehabilitation and manages the medical center’s neuropsychological assessment and treatment team providing services to adults with concussion.  She has published and presented in national and international venues, and is a co-author of the Cognitive Rehabilitation Manual: Translating Evidence-Based Recommendations into Practice. 


 

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