Navigating Brain Trauma is a Lonely Process

Yesterday I went with some new friends from the New York City Chapter of the Brain Injury Alliance (BIANYC) to see an artist discuss her work. Elliette Markhbein's show is called Whack'ed ... and then everything was different: Portraits of Traumatic Brain Injury Survivors. The artist suffered a brain injury 8 years ago and started painting during her recovery (like me). When she was first injured, she told us, she felt alone in her struggle. She barely understood what she was going through and once she did, she could not imagine that there were others who were like her. The TBI survivors viewing the show echoed that sentiment.

http://www.biausa.org/tbi-portrait-project

A therapist, in the months after my surgery, said something I will never forget. I felt so powerless trying to express what I was experiencing. I just wanted to explain it to one person, find one person who could understand what it was like to have brain surgery and then struggle to complete basic and previously mindless tasks. The therapist said, "Nobody will ever understand." I tried to accept those horrifying words, but it turned out she was wrong.

Most of the brain injury survivors I've met were abandoned by friends and family members. I am no different. None of my relationships was untouched by my experience. I am one of the lucky survivors to have a husband and daughter who love me enough to make a tremendous effort to understand. I am also so grateful for the other survivors I am meeting through the BIA.

This brain injury is part of my identity now. Everyone is shaped by his or her experiences, needs to process the changes, and may find solace in the company of others with similar pasts. Recognizing change, reflecting on experiences, and articulating frustration is hampered, or in some cases impossible, when the organ responsible for doing these tasks is damaged. Try wrapping your head around that one.