Leanne: Riding for MS, riding for my life

I was in my second year of college when I awoke one morning with double vision. To put it into perspective: When I drove my car down the road, I saw two yellow lines, two cars moving toward me—two of everything. But if I closed one eye, my problem appeared to be solved.

Too scared to go to the doctor, I waited a day to see if the symptoms would go away on their own. They didn’t, so I reluctantly went to the walk-in clinic. Within a few minutes of examining me, the doctor told me I had multiple sclerosis. He said I would need to go to the hospital for a CT scan.

Multiple sclerosis. I had never heard those words before. I had no idea what they meant.

My fears came true at the hospital. The neurologist on call was a straight-shooter with a limited bedside manner. After the CT scan, he confirmed my diagnosis, seeming to believe at the young age of 19 I was an adult and able to handle the news. I learned that while this could one day lead to my not being able to walk, the road I was on was unknown, as the disease progressed differently in each patient. At that time, there was no real medication I could take.

The following day, I saw my primary doctor. He advised me to not tell a soul for fear that I would be labeled as handicapped for the remainder of my life. I held it as a secret for over twenty years.

Until 2010. Twenty years after my diagnosis, my husband Ed, who has been by my side since I was diagnosed, decided to do his first MS bike ride. He rode 150 miles, raising over $6,500 for a cause near and dear to our hearts. When friends asked him who he was riding for, we announced it: me. Many were shocked. After all, no one can tell I suffer from MS because all my symptoms are internal. Combine this with the fact that I would never tell anyone I am struggling—How was anyone supposed to know?

As I decided to become more public about my disease, I realized there are more people out there like me. Some are not as lucky with how the disease has affected their mobility. Others are newly diagnosed and fearful of what the future holds. Unfortunately, this disease is not visible to the naked eye and so awareness must be raised. People who have this disease need inspiration to realize they are not defined by MS. More money is needed for research to help improve the quality of life for those impacted.

In 2015, in honor of celebrating my 25th year of having MS, I decided to join Ed and his bike team, “Team Everest,” to ride 150 miles from Boston to Provincetown. The support of nearly 2,000 riders plus spectators gave me the drive to finish a challenge I never imagined doing in my life.

“What a terrible way to meet great people!” is a common phrase amongst the friends we’ve made because of this disease. It has given me the opportunity to fundraise in support of other MS related charities. Ed and I personally have raised nearly $150,000 combined thanks to colleagues, friends, and family. And Team Everest has raised over $1.2 million since inception!

One of the charities I’m involved with is MS Global, which focuses on keeping those with MS active. It hosts an annual charity ride at a different location each year. In 2019, just two weeks after joining Boston Trust Walden, I rode with MS Global 285 miles climbing 16,512 feet on the Cabot Trail in Cape Breton, Nova Scotia. While known as one of the most picturesque places in the world, our experience was slightly different. The weather didn’t cooperate—rain came down sideways, the wind howled, and riders risked hypothermia as they rode up into the mountains.

The best day, pictured here, was when I climbed North Mountain alone, nearly 1,400 feet up. I’ve actually known this mountain since I was born; my parents grew up in Cape Breton before coming to the States in the early 1960s. So, I know that when you climb this mountain in a car, you can hear the engine struggle.

On that ride I thought: I’m climbing up this mountain on a bike? In the cold and rain?? With MS??? AMAZING!!!!

Check out Leanne’s fundraiser page for Can Do MS.