5 questions: After a traumatic brain injury, she is helping other survivors

It was a construction truck towing a cement mixer.

When the vehicle swerved on a road in Willistown Township, Candace Gantt’s bicycle helmet couldn’t protect her from suffering a traumatic brain injury. The athlete spent weeks in a coma, months in the hospital, years rehabbing.

Now, she’s the founder of the Mind Your Brain Foundation, which is holding a conference for survivors and their families on March 30 at the University of Pennsylvania’s Perelman Center for Advanced Medicine.

Gantt, a resident of Berwyn, recently spoke to us about the accident, her recovery, and her mission to help others. More information is at mindyourbrainfoundation.org.

On July 21, 2005, I was riding my bicycle with a friend. I had just completed my first half Iron Man competition. A construction vehicle that was hauling a trailer with a small cement mixer on it passed me. He was going too fast. He went wide, but up over the crest of a hill was an oncoming car. He pulled back into the right lane. His trailer fishtailed and hit my bike, which launched me into a telephone pole. You tumble then. I hit a fence and ended up back on the road. He kept going.

I was unconscious. My friend called 911. An emergency room doctor at Penn who monitors 911 calls was only a mile away. Because he was close by, and a good Samaritan, and because he recognized that a bicycle accident likely has significant challenges, he responded. He got there before the ambulance and called the Medivac helicopter. I was airlifted to Penn Medicine. My husband was working in Wilmington. He drove immediately to the emergency room, where he was met by a priest.

I was fitted with an intracranial bolt. They drill a hole in your skull. The purpose is to monitor the intracranial pressure. As your brain swells, it chokes off your brain stem, which is your heart, your lungs, all of your large organ communication. There is a threshold when the pressure becomes life-threatening. I reached that point after about five hours. So Sean Grady, the chair of neurosurgery for Penn Medicine – I was lucky he was on shift -- performed an emergency craniotomy at about 11 p.m. They took a plate about the size of my hand from my skull.

The swelling went down. After three weeks, I came out of my coma and my husband was then praising the Lord that I was still alive. But he was given the grim news that I would probably not be able to walk or talk again. I would not understand language.

I started to respond to commands -- blink your eyes, squeeze my hand. That was a tremendous milestone.

I was moved to Bryn Mawr Rehab, which has a floor specifically for trauma patients. I made great progress. I could stand up in a month. I could speak with one-word answers -- yes and no. Although these milestones may seem insignificant, there was such joy to see that I was making progress.

In three months, I could walk unassisted. And I could talk in a sentence. I had no significant vocabulary, but I could say, “My name is Candace Gantt.”

During that time, I had occupational therapy, cognitive therapy, physical therapy, all the therapies they had. It was exhausting. And, of course, I still had no skull plate in my head. So I had to wear a helmet.

As I became more aware, I wondered, what happened? Why am I here? Why is my head shaved? (That’s not a good look.) I was disoriented. And, where are my children? Who’s taking care of them? That can lead to depression. You don’t understand. You don’t have high function. No reasoning. No problem-solving. That piece of the brain takes much longer to recover.

I have no memory of those first few months, so I don’t have a significant emotional response to it. But my husband and children did. My daughters were 4 and 10 years old. They all had counseling for PTSD.

Nine months go by, and I am starting to run. I could talk in a couple of sentences and string together ideas. But that marked the end of what the insurance company would cover. I was released from Bryn Mawr. So I could tie my shoes, basically. But I couldn’t drive. I still had my helmet on. I couldn’t manage the house. My husband hired an au pair so he could go back to work.

Then, it was time to put my skull plate back in. It was in the freezer at Penn Medicine, and you’re hoping they spelled your name right because you want the same one back. I went back into surgery. They attached that bone with two plates and about 40 bolts. A year later, I could run three miles. That was big. That was my joy. But someone had to run with me so I didn’t get lost.

At two years, I was thrilled with my recovery. But I also realized I hadn’t fully recovered. I dropped my daughter off at a play date and couldn’t remember where I left her.

My outpatient insurance had reached its limit. Unless I could pay out of pocket -- which I could, and I did -- there were no other resources to help me recover. For two to three years after that, I was on a mission to find every resource for cognitive rehabilitation. I was doing self-help. All the research. All the books.

Then, they realized that my skull plate was starting to be reabsorbed by my body, which recognized it as damaged. I went back into surgery to have that skull plate removed, and they put in a piece of plastic. Forty titanium bolts again; 100 stitches across my scalp.

About five years out from my accident, I went back to Sean Grady and pleaded with him: “I’ve come a long way, but I’m not myself.” I still had the vocabulary of a 5-year-old. I could not process complex thoughts. I knew that I wasn’t done.

Sean recommended that I be part of the Center for Brain Injury and Repair at Penn, that I work with them and found a Mind Your Brain conference for others to get help. There are 5.3 million survivors in the U.S. I was well-aware of the gap. There’s no safety net for anyone who has a brain injury. After the rehabilitation and your insurance is exhausted, you have nothing else. You fall off a cliff.

There’s a depression component. There are suicidal thoughts. There is a drug component. It just cascades. And these patients are not taxpayers anymore because they can’t get a job. So the expense associated with their deficits is enormous.

Yet we know you can recover. The brain rewires itself. The electrical circuitry in your brain goes around the damage and finds a connection on the other side. This has been studied for years. The brain fixes itself. You have to work at it. This has to be a full-time job. You play memory games and you do cognitive exercises. One woman memorized the scientific names of all the plants in her yard to overcome her deficit. I memorized Bible verses.

The first year of the conference – 2015 – we had 50 attendees. This year, we’re sold out at 300 participants, although we may be able to make room for more.

Now, we’ve decided that this has national implications. We can transplant this model to medical centers all over the U.S. So we created the nonprofit foundation to expand beyond Philadelphia. We have a conference on April 5 at Houston Methodist, one in October at Lancaster General.

At the conferences, we offer resources that people may not have considered. There’s an educational component, where you can go into a workshop with a professional who gives you tools. Maybe it’s a balance issue, getting back to physical fitness. Or the issue could be cognitive. We introduce art therapy and music therapy.

A panel of experts talks about current research. We also have a panel of other brain-injury survivors that share their stories and offer hope.

Every year, a big focus is our veterans. We have specific workshops for them and connect them with resources that are available just to veterans.

It’s a marathon. Do not give up. Start today. Search out help. Make it a full-time job to recover because that’s what it is. The reward of your hard work is significant. It’s possible.

Six months after my accident, I was back on my bike, although it was a stationary bike in the basement. In 2012, I was in an Ironman competition, with the wind in my hair — although I also had my helmet on.

sandybauers10@gmail.com