Monday, October 30, 2023

Reflections of a Pediatric Survivor of Traumatic Brain Injury: 42 Years Later

The following is an article written by Brason Lee, featuring his reflections on being a pediatric survivor of traumatic brain injury. 

I lived my entire adult life under the shadow of a severe traumatic brain injury. Imagine if I had the chance to go back in time to February 16, 1981—the date of my release from the hospital. What would I tell my 18-year-old self to prepare him for the decades to come?

I would tell him not to be afraid of what he will encounter. It is okay to feel loss and grief as he rediscovers the outside world. It is okay to feel like an alien in a place that seems both strange and familiar. It is okay to sit in a room by himself so that he could better manage his thoughts. Recovery is like a long road with many turns, valleys, and potholes. It will be hard to navigate.
I would tell him not to be too hard on himself. He does not need to pressure himself into living up to the reputation he had prior to his brain injury. Most people in the initial years will be more understanding than he may realize. I would say that he may want to step back more often so that he could experience the world with all its magic and wonder.
I would tell him not to be overly consumed with the loss of friendships that will come. He may not understand that the dynamics of childhood friendships—even among those without brain injuries—can and do change over time. The loss of friendships may not be a completely unique consequence of his neurologic condition. The challenges of life after brain injury may only hasten this normal life experience. I would say that the loss of friendships will unintentionally free up time so that he could devote his energies to rehabilitation and to the challenges of transitioning into adulthood. This will be a big step for any teenager; let alone someone who is struggling with any number of symptoms related to his brain injury, such as profound confusion or slurred speech.
I would tell him not to dwell too much on the fact that he is no longer the person who he used to be. Although we can all expect some changes in how we might see ourselves over time, I would say that the changes brought on after brain injury may be especially distressing because they—the changes—will be swift. One such change will be with memory. People will start reminiscing about events that he may not remember and he will not be able to understand or ask the question why. The feeling of loss is part of a normal grieving process. I would say that he will experience denial, anger, and depression before reaching acceptance. It is okay to move back and forth between these emotions, such as from denial to anger and back to denial. There is no set course or timeframe. No one should rush him into accepting the realities of brain injury before he is ready to accept them on his own terms.
It might be hard for him to see this now but some difficulties can improve with time and effort. I would say that he will meet a passionate speech-language pathologist who will help him greatly and that, through their interactions, he will discover the drive to pursue his newly found dreams. His determination will rise from a truly genuine exchange of warmth and care between a therapist and patient—the kind that will carry him through every struggle long after therapy has ended. The ability to find inspiration and purpose again will be essential to thriving beyond the problems associated with brain injury. I would say that his determination to realize these dreams will enable him to complete a bachelor's degree within seven years and a graduate degree within another three years. He will establish a 30-year professional career as a social worker and research scientist.
I would tell him not to be discouraged by the stares of disgust or disapproval by some of his fellow classmates. At times, he will encounter the same stares by adults throughout his life. I would tell him not to be embarrassed by the use of disability services or by the reliance on social workers and other therapists to help him through a rough week. I would encourage him not to surrender to his injuries before he has given himself a chance. I would tell him not to worry about failure.
Finally, I would tell him that years of effort will lead him to a meaningful and rewarding place—a life in which he can stand tall and claim that, despite all the past and continuing challenges, a productive life after brain injury is possible. Recovery is a challenging process, especially during the first decade. There is no set period of time for when or how he reaches the point of acceptance. Embrace every moment of success without fear or concern for what people might think. At some point in the decades to come, he will no longer feel lost in a crowd for too long. He will rediscover the person he thought he had lost.

Acknowledgments

I would like to thank Dr. Lesha Shah, Associate Professor of Psychiatry at the Icahn School of Medicine at Mount Sinai for her thoughtful input.