Your brain injury occurred when a vehicle trailer crashed into you while you were cycling. What happened once you arrived at the hospital?
I was in a coma. They fitted me with an intracranial pressure bolt that measured the pressure in my brain. I had a feeding tube and a tracheostomy because I wasn't breathing on my own. They took out a plate in my skull to allow my brain to swell.
What happened after you woke from the coma?
I couldn't walk. I couldn't talk. The brain damage was so severe that after my hospitalization I was sent to Bryn Mawr Rehab Hospital in a stretcher and with a helmet on. I couldn't answer questions or follow commands. I waited four months to see my children because I looked so bad.
What other challenges did you face?
Brain injury survivors can have trouble regulating their emotions. You have outbursts. You have no self-awareness. It causes depression because you don't know who you are or how you got there. Your senses are heightened. After six months, they put my skull plate back in, but it started to collapse, so I had to go back and have a plastic one put in.
What was recovery like?
It's all kinds of baby steps. I was finally able to read Dr. Seuss when I got home from the rehabilitation center, so I was pretty excited about that. Then I could read the paper, then I could walk by myself, and then run with people. After two years, I was able to drive again. Five years was the turning point; I ran the Boston Marathon again. Then I competed in an Iron Man competition after seven years.
You split your time these days between Berwyn, PA, and Bonita Springs, FL. How are you doing?
I still have memory trouble, but therapy has taught me how to improve my memory functioning. Although it's improved, I still have to work on it.
You joined the Brain Injury Association of Pennsylvania board in 2016 and became Pennsylvania Brain Injury Coalition co-director in 2018. Why did you get involved?
I struggled to find help once I was discharged. When I got home after dropping my kid off at a playdate, I couldn't remember where I left her. That was the drive to find more resources. The brain injury community was really struggling, and we really needed to help them.
In 2018, you started the Mind Your Brain Foundation with help from the University of Pennsylvania. What inspired that?
During a trip to my neurosurgeon [M. Sean Grady, MD, emeritus professor of neurosurgery at the University of Pennsylvania], five years after the accident, I told him I couldn't get any more help. My insurance was exhausted. I couldn't get state services. He said, “We should have a free conference. You've met so many people that are clinicians and physicians and neuroscientists. Let's get them together and put together a conference for other brain injury survivors.” Our focus was to give them help and hope. There were 50 people at the first conference in 2015. After five years, we had 350 people attending.
What is the foundation's goal?
The first is free conferences. We're never going to charge people overcoming traumatic brain injuries. We want to help introduce them to therapies they didn't know existed. Traumatic brain injury navigators help them fill out applications, and we can refer them to other people if they need legal advice. We also can pay survivors’ unmet medical needs and give grants to Penn neuroscience students.
How do you feel when you see its impact?
I'm grateful that I'm able to help others. There really is a sweet spot in my heart for them.
