“World Class Equestrian Dreams Become Reality”
Nobody ever forgets receiving the news of their Multiple Sclerosis (MS) diagnosis. Ever.
For me it was 14 years ago, after enduring a summer of indescribable fatigue, numbness, tingling and a creepy painful electrical zapping sensation running up my neck called “L’Hermitte’s Sign.” It hurt! Every time my chin came to my chest… zap!
As an equestrian athlete, I knew my body well and I knew something was drastically wrong. I trusted my gut instinct and pushed for testing: MRI’s, evoked potential tests and a lumbar puncture. My hunch was correct and my fears were confirmed… I became the third person in my family to be diagnosed with MS.
There has never been a day in my life when I haven’t experienced some facet of MS; first as a caregiver to my father James, and later as a patient. I have been the child of an MS patient, wrought with the mixture of worry, a feeling of helplessness and keeping the flame of hope alive. I’ve also been the one with MS raising a family, trying to stay positive and productive, minimizing those elements of the disease that only an MS patient can know.
I’ll never forget the deepest darkest days of the new diagnosis. I remember being bedridden from a botched spinal tap that left me unable to walk for two weeks laying flat on my back at my old farmhouse in Maine with searingly painful spinal headaches, staring at the crack in the ceiling . I spent days contemplating what my future held. Because my father had an aggressive form of MS (there were no treatments available for him at the time) I grew up witnessing the worst form of the disease. As a result my dad was a quadriplegic with MS that I never saw stand or walk. He collapsed six months after I was born.
Growing up, we were always told MS was not hereditary and that we as kids had nothing to worry about. Imagine our shock when my older sister received her MS diagnosis! Although my sister fared much better than my father, I was at a crossroads and did not know which course my disease would track. Would I be a quadriplegic like my dad or more ambulatory like my sister? All I knew was that I was 36 and the parent of a 5-year-old son who was the light of my life. I worked full-time coaching and teaching disabled and able-bodied equestrians. I was happily married and for the first time in my life the specter of MS was at bay and not an everyday concern. I felt free. But then the bottom of my world fell out.
As I lay flat on my back, I was filled with anxiety about my future by this latest twist of fate . An MS diagnosis is never easy –even when you’ve grown up with it your whole life. It is a taste of mortality; a situation of which you have no control over what is happening to you. As I lay there I had a deep focus…. What were my goals? Dreams? Coping mechanisms? How would I move forward in the most positive manner? In the depths of my analysis and based on my life experiences I developed two goals knowing that I had to move my life forward in a positive manner:
- I would not be a “victim” of MS. My primary goal was to be the healthiest mother and wife possible so I could remain actively engaged in my family’s life.
- My personal goal: To represent the United States as an equestrian.
One of my greatest passions in life is–and always has been–horses. I believe in the power and benefit of the horses and my sport of dressage (and Para Dressage). Despite never being fueled by powerful economics, I pursued the sport with relentless determination and worked two to three jobs for most of my life have to make it happen.
When I was finally able to walk again I sat on my horse Paxton. Through all of the changes in my life she was the one thing that made me feel like me. I was grounded, hopeful and happy. My son was holding Paxton as I gingerly got on her with my fragile back. When I saw my son I wept. I cannot promise him he will not get MS, but I am determined to show him what a person with MS can do. My entire philosophy around riding and competing shifted. While the ribbons and trophies were nice, I now felt that I rode for a reason. I offered myself and others a message of hope and demonstrated the power of possibility. As a competitor I developed my strategy. I was to take all that I had learned from my Dad and my sport and built my own wellness team. I put the most positive, loving, encouraging and intelligent people on my team to help me achieve my goals. These were people that I knew would be there for me no matter what. Then I was to train and work hard be a “better me.” There are many successful days as well as frustrating days where things don’t go according to plan, but I refuse to give up.
While I fueled the spiritual side of my soul with my riding I made sure I took good care of my physical well-being. I went on medication three days after my diagnosis and continued to stay on my health and wellness program with proper diet, exercise and medication with critical help from my physicians. I could not take my health for granted.
My dreams sent me above and beyond what I thought possible! I represented Team USA at the first ever World Equestrian Games (WEG) in Kentucky in 2010 on my little mare, Paxton Abbey. Nothing prepares you for the feeling when you hear 25,000 people chanting “USA! USA!” Out of 960 horse-rider combinations from around the world I was the only rider that bred, raised, trained, and competed with my own horse. We finished 13th in the world. After the games I was the 2012 Alternate for the 2012 Paralympic Games in London, the 2014 alternate for the World Equestrian Games in Normandy, France, and am currently Long-Listed as an alternate for the Rio Paralympic Games on my new partner Rubicon 75–a.k.a “Ruby.” My love of horses and sport has taken me around our amazing country and around the world in places such as Norway, Australia, France, Belgium, and Great Britain. My goal is to keep pushing forward toward the World Games in 2018 and the 2020 Paralympic in Tokyo.
Ruby, like Paxton and the horses before him, resurrects and perpetuates a feeling of joy and the power of potential with the choices we have in life. The journey is challenging, but with my goals I am motivated to try harder. In that respect, Ruby brings out the best in me. I am grateful for every day!
To my fellow MS patients and those in our community: I send a message that if you are alive you can thrive! Horses may not be your thing, but I guarantee each of us has a gift, a goal, and a joy. Always remember to do what you love, love what you do, and always take care of yourself. Reach out to others when you need a helping hand, don’t go at it alone! There are numerous resources to MS patients. Wherever you fall on the disability scale you are someone’s mother, father, parent, child, sister or brother…you are loved and have much to share and celebrate.