Giving voice to post-concussive syndrome.

When Trinity Burton is asked about her life with post-concussive syndrome, she’s almost clinical in her response: She provides a list of symptoms, the proper concussion protocol, and post-treatment care. She can instantly give an anatomical description and name the functions of all the major areas of the brain, especially the occipital lobe, the area that took the brunt of the force when she fell as a sophomore in high school. But what she can’t do is remember a single detail from the day that changed her life.

A life-altering accident

The details that Trinity has pieced together are this: At 15 years old, she was on a class trip with her speech team when she fell backward and hit the corner of a table at a restaurant before falling to the tile floor. The students she was with chose not to tell an adult that she had hit her head, so the trip continued. When Trinity arrived home that evening, she immediately went to sleep, and the following day she woke up with her first migraine and a painful bump over her left occipital area, the back of the skull. Her parents took her to the hospital, where she was advised to follow concussion protocol. She took the week off, hoping the pain and cognitive dysfunction she was experiencing would dissipate—but they didn’t.

“I went back to school around 15 days after my concussion, and three weeks later, I went from a straight-A student to failing all my exams,” shares Trinity.

Trinity was diagnosed with mild traumatic brain injury (mTBI) the following year, and was finally diagnosed with post-concussive syndrome at 17. Now 19, Trinity is beginning to work toward educating the public about the life-changing effects of living with post- concussive syndrome.

Coping with Chronic Pain

The part of Trinity’s brain damaged in the fall is the visual processing center, which is responsible for analyzing everything we see. The injury to Trinity’s occipital lobe causes significant pain all over her body, which was eventually diagnosed as chronic pain syndrome. Trinity also experiences severe “pain spikes.” The pain gets very intense; she becomes nauseous, struggles with balance and memory issues, and sometimes loses her peripheral vision. Initially, Trinity was experiencing these spikes at least 20 times a day. She has migraine attacks weekly, and they can last from several hours to several days. She’s yet to find a treatment that gives her relief. But the physical pain is just one piece of her accident’s aftermath. In the months after the incident, Trinity not only experienced physical pain, but also feelings of failure and powerlessness.

“With the pain, tinnitus, intense anxiety, and all-encompassing lack of control over what was happening to me, I quickly became severely depressed and began having suicidal ideation.”

Never knowing if or when the pain would stop, Trinity’s depression deepened and her struggle to get better became a struggle to survive.

Finding her way back

For a year and a half after the accident, Trinity attended an online K-12 school, and her parents reworked their schedules so that one of them was home with her at all times. But at their urging, she returned to a classroom for her senior year of high school. At her new school, Life Way Christian School, Trinity felt a huge sense of community and support from the teachers and classmates. After graduating, she returned to teach at the school—and has found the staff to be like family. “I would be dead now without my support system,” she states firmly.

Trinity is also a full-time student at the local community college, where the school’s disability resource center provides accommodations when necessary. She loves having access to all the chemistry and biology databases, so she can spend her free time researching the brain, chronic pain disorders, and the effects of post-concussive syndrome.

“Studying my diseases really helps me, so I spend a few hours in the library studying my disease each day,” she says.

“There is so much we don’t know or understand about the brain, and I really feel the need to educate myself and doctors about it.” She hopes that if her pain allows it, she might one day go to medical school.

“I want to help people who are not considered helpable right now, like me,” she says. “I don’t want kids 20 or 30 years from now to have to sit across from a doctor and hear, ‘We can’t help you so you might as well just leave.’ I don’t want any other kid to experience the heartbreak that comes with that, so I’m going to do whatever I can to make sure that doesn’t happen.”

A new identity

Trinity does not remember what it was like to live without pain, noting that the accident made her a completely different person. She shares:

“I wouldn’t say that I have gotten better; I’ve just learned to cope with it. I know that the symptoms are going to pass and they aren’t going to kill me. I’ve learned to survive, and while it’s still a daily struggle, I’m taking it one day at a time.”

Talk therapy and meditation provide some help with pain management, particularly an exercise where she takes time to unclench and stretch sore muscles. Undergoing a genetic test that helped create a personalized medication plan also provided some helpful direction in deciding which treatments to try.

When asked what other tools help her cope, Trinity takes a minute and then says, “My faith has really helped me. The hope of heaven has provided me with a sense of calm and understanding, knowing that there is something greater than me going on and that my Savior has it under control.”

But, she adds, “I’d say that I don’t have an inspiring put-it-on-your-wall kind of thing that has helped me survive. I just wake up and show up.”

Fighting for Survival

Suicide is far too common among people with TBI, and many of the people Trinity has previously met with the same injury have taken their lives. That’s given her a strong desire to show the TBI community that it is possible to survive and to live a full life.

“When we talk about brain injury, mental health is often left out or ignored,” she says. “But it’s a huge part of living with brain injury. Not speaking about my mental health when I am talking about my brain injury would be a disservice to myself and every person who lives with TBI.”

Trinity is an advocate with the Brain Injury Association of America, writing letters to Congress, connecting with other brain injury patients, and educating the public about the lasting effects of TBI and post-concussive syndrome. She’s emphatic when she talks about the need for all patients to be listened to and understood—because she was not.

“I know in my bones that there are other people who have a mild traumatic brain injury and/or post-concussive syndrome and just don’t have a picture of someone who is alive,” she says. “I know there are kids who don’t have an example of people who are willing to talk about just barely making it through the day, and not being able to sleep at night because of the pain, and not being able to do everything they want to do because of their condition.

“So, as long as I have air in my lungs, I will be talking about it.”

— by Michaela O’Connor

RESOURCES
Brain Injury Association: biausa.org
Concussion Legacy Foundation:
concussionfoundation.org
Mayo Clinic on Post-Concussive
Syndrome: mayocl.in/2xbNZBN
To Write Love on Her Arms: twloha.com
The Mighty: themighty.com
Letters Against Depression:
lettersagainst.org