I graduated from Carrabassett Valley Academy in June 2008. That summer I was getting ready for my freshman year at the University of Maine to study Electrical Engineering. I was healthy, fit and getting ready to start the next part of my life.
A few months prior, I had competed in the U.S. Freestyle Skiing Junior Olympics. This was the March Madness of freestyle skiing; sixty of the country’s best freestyle skiers under the age of 18 were all competing for the national championship. I had knocked off higher seeds in the duals leading up to the round of 16. In the round of 16, I went up against the No. 1 seed. We were neck and neck until my ski broke in half. My heart had broken in half. That moment went from a super high, to a super low in 0.2 seconds due to an equipment failure.
I still wanted to compete on the weekends while at college and I was still chasing my dream of making the U.S. Ski Team. Life was good. I didn’t know it then, but everything would change fast. I went in for my annual physical; they did blood tests, a heart test – a normal, expected physical exam. The next day I got a call from my doctor.
“Keegan, do you have any injuries right now?” he asked.
“Were you drinking the night before you came in to see me?”
“I’m going to send you to a neurologist for additional testing.”
My tests had come back showing that my liver enzymes were fourteen times higher than average. This meant that my liver working overtime to process muscle waste. I went to the neurologist as my doctor advised and they did an Electromyography or EMG. An EMG is where they stuck needles all over my body and then ran an electrical current through them to listen to how your muscles react. This was one of the most painful tests I have ever done. Their diagnosis: Muscular Dystrophy.
I was shocked. My dad has Muscular Dystrophy. We were always told it was supposed to skip a generation and that it can only be passed on by women. This wasn’t supposed to happen. I sat in my car outside of the neurologist’s office for thirty minutes and cried. Who could I talk to?
During that time my older brother was serving in Iraq, my younger sister and my mom were in South Carolina, and my younger brother was only nine. I didn’t want to tell anyone else, not my friends or coaches. I was overcome with so many thoughts and emotions: fear, helplessness, isolation. But most of all, above everything else, I didn’t want to break my dad’s heart.
My dad has battled Muscular Dystrophy since he was 18-years-old. Like me, he was an elite athlete on his way to play Division 1 Hockey for Boston University. He didn’t end up meeting any of his physical testing requirements and was soon diagnosed with MD. He never went to Boston University, but he did end up playing two years of Division II tennis and earned his doctorate. A John McEnroe of his time, my dad battled MD with both resilience and grace, and he still does today.
I drove home from the doctor and pulled into the driveway. After a few deep breaths I finally collected myself to walk into the house. My dad laid in his bed watching TV. With tears in my eyes I told him what the doctor told me. He stared at me, swallowed a few times and spoke the words that changed my outlook on life forever. “Well Keegan, at least I know you’re mine! Go grab a beer and let’s talk about how we’re going to get through this.”
I was taken aback by his response but we both laughed through our tears. In that moment he had taught me the most important lesson. Life can suck, laugh about it, and figure out a way to adapt and overcome whatever obstacle you are facing on any given day.
Since my diagnosis my life has been a medical whirlwind. Everything we thought we knew about my dad’s variation of the disease had all changed. Doctor after doctor, test after test, misdiagnosis after misdiagnosis, hope and disappointment. Flights to and from the National Institute of Health in Washington D.C all yielded the same response: “We know your symptoms, your progression, and know your end state but we don’t know what is causing your type of Muscular Dystrophy.”
Muscular Dystrophy is a rare disease on its own, but what sucks even more is that my father and I have a type so rare that it has never been seen or identified. Currently, we are diagnosed as “The Kilroy Variant of Distal Myopathy Muscular Dystrophy”. The ‘distal myopathy’ is the easy part; it means the muscles in my arms and legs atrophy (or degrade) and I can’t get the strength back. The ‘Kilroy Variant’ is the tricky part – all these changes are happening in my body, but no one can figure out what gene or combination of genes is causing it. This unknown is the hardest. How can you fight something when you don’t know what you are fighting? And how do you cure something when you don’t know what you are curing?
While I wait and hope for these answers, I have an amazing team member who is tackling the issue of sustaining what little strength I currently have. My sister, Elisabeth, is currently pursuing her PhD at the University of Maine in Bio-Medical Science. Specifically, she studies the types of exercises that are beneficial or detrimental for people with Muscular Dystrophy. I have gone from a strong, chiseled, elite athlete to a boney-armed guy who looks like he always skips leg day at the gym. But through it all family, friends and the Carrabassett Valley Academy community have continued to support me.