The Ride of My Life – Catherine Brubaker’s Story

Catherine Brubaker had what she thought was the perfect life—the relationship, the homes, the trips, the degrees, the money—until she and her (then) partner were attacked and she was left with a lifelong brain injury. But through permanent trauma came healing of the soul and a calling to help others to find their way out of the darkness of brain injury. 

The long and the short of it is, I thought I had a successful life. I was in the financial services industry, had a long-term relationship, and had two homes, two cars, a boat, dogs, toys. My partner and I were in great shape. I was on the ski team, downhill skiing. I was really enjoying life and was at the peak—or what I thought to be the peak of my life. And then it was all taken away from me in an instant. On a weekend away with my partner, we were drugged and assaulted and left for dead. From the blood loss of the attack, I was left with an anoxic brain injury (lack of oxygen to the brain). I had a lot of amnesia and extreme difficulty with everything. The medical response wasn’t what it should have been at the time because there was no bleeding in the brain on the scans. The blood was already gone from my brain since I had bled so much from the attack, so no one noticed the brain injury, and I was too confused to tell them anything accurately. But, they knew there was a problem. I had obvious issues with my heart rate. It was down to 38, and no one could explain why. I had a lot of confusion, and it was clear within three days that I had a big problem, but no one knew what that problem was. I was left to pick up the pieces of my life.

Now, instead of focusing on the attack, my focus is on my recovery. It’s been a big part of my journey of healing to let go of the assault. For a long time, I was stuck in the lack of justice. I had a lot of anger. When you have a brain injury and you lose everything, including your ability to walk, talk, shower, feed yourself, and other things, you get mad. After being competent and having a master’s degree and a high IQ…and then here I am…I’m stuck in a wheelchair. It’s a huge shock. I had to go through all of the stages of grief while I was in rehab. Events began to come back as the amnesia lifted.

During rehab, we started strength testing, and the testing revealed there were some serious issues. I wasn’t able to stand up. My blood pressure would bottom out, and I would pass out. I was diagnosed with postural orthostatic tachycardia syndrome, POTs. It’s a part of the dysautonomia—my autonomic system isn’t working correctly. My brain doesn’t have clear communication with my body. Then, my heart failed, so I had to get a pacemaker. My blood pressure bottoms out easily. My temperature doesn’t regulate, so I constantly have to add and remove layers of clothing. My body doesn’t hold onto salts and electrolytes, which is an ongoing issue, and I go in and out of episodes.

Adding to the issues I already had, while on my way home from having a pacemaker implanted to regulate my heart, I was in a head-on collision as the front passenger. That gave me a second traumatic brain injury—post-concussive syndrome—and landed me back in the hospital. I was an inpatient for about a month and outpatient after that for another month or so and then in rehab after that. That was about a year and half after the original brain injury, around 2012.

I’ll be very candid. I don’t think I have the most intense strength. After the second injury, I bottomed out. I lost my relationship and had to live with my mother, who was not in the best health. My life was packed into boxes, and I slept on the couch. Then, one morning, I found my mother passed away. At that point, I wanted to give up, but I saw the result of where my life could go if I did give up, the trajectory of my life if I were just going to lie in bed and do nothing. I could see it before my eyes—like a choice in front of me. That motivated me.

I discovered adaptive cycling in rehab and found that my blood doesn’t pool in my abdomen and legs when my legs are horizontal. So, I went searching for the best thing for me—a trike. Discovering a trike wasn’t by design or by plan. It was purely by accident; I just couldn’t balance a regular bike. When I went to the local bike shop to look for a trike, I was picturing an old lady’s bike with a bell and a basket! I didn’t know what to expect. At a bike shop online, I found the coolest thing I’d ever seen. It looks like a Batmobile, and it’s the fastest trike made in America. It took a month or so to get it delivered because it was fitted specifically to my size.

The day I got my trike was the day I got my freedom back. It changed my life. First, I rode it around the block, and then a bit farther, and then I rode to my grandmother’s house—from Tempe to Chandler, Arizona—and back. Now, I ride to live and I live to ride, every day.

If I don’t ride my trike, I have challenges with my digestive system, my blood pressure—everything. So, by cycling, I am forcing my digestive system to work. I’m forcing my body to heal. Forcing my blood pressure to work and really trying to heal it naturally, despite taking a ton of medicine for the neurological effects. I had to find a healthy way to get control and not be a shut-in anymore. After having a full life and then suddenly going to live with my mother and having the most exciting thing be senior discount day with my mom, well, that’s a stark contrast. Here I am, a person who has her master’s in leadership, and I was playing video games with 19-year-olds. And here I was in my bedroom I was in when I was two years old. Cycling allowed me to go from being a shut-in to reclaiming my freedom.

That’s how I met Dan Zimmerman. Dan and I literally ran into each other on the bike path on our adaptive tricycles. He had suffered a stroke, so the right side of his body doesn’t function properly. When he spoke, his speech was delayed like mine. We had something in common—we were both coming back from tragedy—and we were complete strangers. Then, he showed me a card. On the back of this card was a plan to cycle across the United States. I wanted to do this! I saw this as my way to a different life.

 

When I rode across the country with Dan, we started as complete strangers and ended up with the most beautiful experience two human beings can have as survivors. We were 20 inches off the ground and in complete silence, reclaiming our lives and seeing the most beautiful parts of the country and meeting people of all walks of life. It’s not the impression you get of the U.S. that you get from seeing it on CNN. There were so many beautiful people along the way.

I have a certain language that I have been developing for this next ride, called Sea to Sea, which we launch on June 4 in Anacortes, Washington. I call it our Road to Recovery. I invite the city mayors and leadership to help celebrate our milestones. And on pit stops along the way, I ask survivors to join us.

Somebody once told me, “That’s a fantastic journey you made, but not everyone is going to have that opportunity.” Which made me think, “What can we do about that?” I had an opportunity to go to the Ellen show because someone I knew bought tickets. And the show we attended was called the 12 days of Christmas. I was blown away to discover that on that show, she was giving away trikes! And also a $500 gift card to Kohl’s and a $250 Visa card. I took those cards and I found the same trike on sale at Kohl’s. I ordered them so they’d come right in time for an event.

22 for 22 is an event to help war veterans. A lot of brain injury survivors are returning from the war and they don’t have solutions to their problems. An average of 22 veterans take their lives every day through suicide as a result of brain injury and PTSD. I gave one of my trikes away at that event to the son of a veteran (and brain injury survivor) who got on my trike and loved it.

I needed to find another trike recipient, so I contacted the BIAAZ (Brain Injury Alliance of Arizona) and asked them to identify another candidate. It was through that contact that I discovered that BIAAZ had resources I didn’t even know existed. They have a 360 gym for disabled people, a return-to-work program, and many more programs and resources for survivors. I would imagine that a lot of survivors don’t even know those resources exist. When I’m in the Facebook groups—and that’s where a lot of survivors are—they’re all talking to each other, but I don’t think they’re familiar with those resources. When I gave those trikes away, the survivors came flooding to my Facebook page. “I want one!” “I want one!” “Where’s my trike?” I was overwhelmed. I felt such a responsibility to make it possible to give trikes to riders.

One of the results of my journey was realizing that I found my voice on my ride. And part of the challenge was also realizing that even though I could cross the country on my trike, I would still need a wheelchair to get through the airport. People don’t understand the challenges I have with organization or short-term memory loss or overstimulation or fatigue, and I recognized that a conversation needed to happen. I knew that I needed to start with that conversation. Dan and I partnered again. He has a nonprofit called Spokes Fighting Strokes, spokesfightingstrokes.org, and my nonprofit is Hope for Trauma, hopefortrauma.org. The vision for Hope for Trauma is to have a national conversation about brain injury and the challenges that survivors have.

I can’t take credit for this work. It really takes a village; it’s not just me. My community was behind me to support me in my very first ride. I needed to gather a bunch of friends to go on my ride. Some of these people didn’t even know me that well. They held fundraisers and opened their homes—families and churches. I knew I could write to these people and they would support me. So I did. And they sent checks. And I used those funds to go on a trip that changed my life.

But again, it’s about teamwork and about people coming together. It’s a miracle when other people do in-kind donations when they hear an inspiring story and they want to help and they want to contribute. They want to contribute a banner or a table or a tablecloth or Internet services—anything. Help along the road, it’s all done by in-kind donations. It’s all done by caring people everywhere.

I don’t think things happen by chance anymore. I believe that was God’s hand. I think that God had a plan for me. Sometimes, you think you’re successful in your own way, and you think you’re living the life you’re supposed to with money and things, but really, you’re kind of in a hamster wheel, just existing.

My father had a true servant-leadership style. That was his legacy, and that’s what I inherited from him, and I want to honor him for that. He left a clear path for me. Serving others is very fulfilling for me, and I know beyond a shadow of a doubt that this is my purpose now. I’ve never known my path this clearly before. This is my most important job.

Kay Stephens’ Story – Embracing Each Day

International model and businesswoman Kay Stephens’ life changed drastically in an instant one windy New York day in 2003. As she walked to class, gale-force winds hurled a 60-pound pole from a poorly secured construction zone fence into the left side of her head. She saw the wind knock down the construction materials like dominos as she blacked out. Her life has never been the same, but Kay hasn’t let her immense challenges get her down. Instead, she embraces each day as a fresh start and is empowering other brain injury survivors through her Faces of TBI campaign. 

Before my brain injury, I found success and fulfillment in many ways. Not only was I an international fashion model with work in my home country of Jamaica and in London, but I also had done public relations for public, private, and governmental entities, had run a grooming and modeling school in Jamaica, and published a book that sold 20,000 copies in the Caribbean. My wonderful daughter had just started high school in New York, where I was attending Queens College.

My concussion happened as I went to class one day. Right as I was feeling thankful that I’d made it to class in one piece, a metal pole from a makeshift construction fence struck the side of my head. My neck went one way as my body went the other. In the emergency room, doctors told me I had short-term memory deficits from the concussion that would remedy themselves within a few weeks. They said I was fine otherwise and did not do an MRI or CT scan. But the truth was that I had suffered many injuries, including herniated and bulging discs in my cervical spine, a torn rotator cuff and tendons, hip and right shoulder bursitis, pelvic injuries, and more. Some of these would not be discovered until years later.

The problems I experienced after that did not make sense to me, and I hid them for a long time, thinking I was going crazy. I couldn’t smell for three years. I had problems with my vision, hearing, and urinary systems. I could look, but I couldn’t interpret what I saw or read the words on the page in front of me. Sounds that are in the background for most people, like a clock ticking or a refrigerator humming, were suddenly loud and overwhelming for me because I couldn’t filter them out. I had terrible neck spasms and blinding headaches.

The true nature of my injuries was not uncovered until 2008, when I finally took control of finding out what had happened to me. I underwent neuropsychological testing, which revealed a “mild” traumatic brain injury, or TBI, which caused short-term memory and attention deficits and emotional deregulation. Parts of my brain had very low oxygen flow. I had to focus on each injury one at a time, and to date, I’ve had more than 1,300 appointments stemming from this one accident. My brain injury may be categorized as mild, but its impact on my life has been immense.

Life as I knew it stopped that day in 2003. My type A personality had to retire early, and surviving my TBI became my primary focus. I underwent so much treatment that I experienced secondary health issues; medications that helped me with aspects of my injury caused gastritis so bad that I wanted to die as I lay in the hospital. Help came in the form of a homeopathic nutritionist who gave me some critical advice: “Let your food be your medicine and your medicine be your food.” I cured my gastritis through an intestinal cleanse, dietary restrictions, and a commitment to the right foods. Combining this with my routine physical therapy and other treatments has allowed me to return to some of my old activities and manage my emotions.

I strengthen and center myself every day through quiet time and prayer. This time connects me with my inner strength and my spiritual sense of a higher purpose. Music is therapy for me, and I connect socially in small group settings with the people who have rallied around me. These things have helped me make my dream for the Faces of TBI campaign a reality. This campaign will raise public awareness of the invisible disability of brain injury to increase understanding, tolerance, funding, and emotional support for those with brain injuries.

I encourage others with brain injuries to accept yourselves. I couldn’t have gotten here without finding the courage to accept my new, disabled self and making changes to support my own success. Find someone to share your feelings with who is objective, while also building your support network of friends and family who accept you the way you are. Envision your new goals, renew your love for yourself, and do what brings you joy! Like me, you can choose to make each day a fresh start.