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Member Spotlight: Uncharted Waters — My Journey With MS

Posted on March 24, 2021

Seven years have now passed since I was first diagnosed with multiple sclerosis (MS), and it has altered my life in ways I could never have imagined.

My life was a dream come true, working on sailboats as a captain and living an island life in Key West, Florida, with my husband. The day before MS came into my life was a normal day, and I went to bed that night without a care in the world. The next morning, however, marked the beginning of a very stressful time. Sometime during the night, I must have experienced a severe episode. I woke up unable to walk, speak, or see properly.

At the emergency room, the medical team swiftly performed a computed tomography (CT) scan and magnetic resonance imaging (MRI). No words can properly express the fear and anxiety I felt while awaiting those results. Within three months of my initial episode, two neurologists told me that I had MS.

The first few years following my diagnosis were filled with anger, pain, frustration, pity, sadness, and resentment. Until my MS diagnosis, I’d spent most of my time in the sun, but MS made it very hard to be in the heat. Before long, I had to give up working on boats. MS felt like this giant monkey on my back, constantly throwing a wrench into every activity I enjoyed. Then came a work trip to the Pacific Northwest that changed everything for me.

By that point, I was working an office job to stay out of the heat, and during a business conference in Portland, Oregon, I felt better than I had in years. It's unfortunate how quickly we acclimate to feeling sick, but for the first time, I realized I didn't have to feel that way, and it became clear that I would have to let go of my life in Key West.

The decision to leave Florida was a painful but necessary one. My husband was on board, and we set off for Seattle, Washington. Surrounded by beautiful mountains, cool temperatures, and waterways that I had never experienced before, I started hiking and camping, and tried new activities like skiing and snowshoeing. Ultimately, I was able to get back to working as a captain. Seattle allowed me the freedom to consider new possibilities — and for the first time in years, I was happy.

In addition to enjoying the new setting of Washington, I also got to tap into my adventurous side. My Seattle MS center asked if I’d be interested in participating in an MS pilot program with First Descents, an organization that provides outdoor experiences for people living with chronic conditions. The trip would allow me to see Montana for the first time and try whitewater kayaking, and I decided to go for it.

One of the most important lessons I learned from my participation in First Descents was that I’d been in denial about my MS fears. Although I outwardly had a positive attitude, I hadn’t previously shared a lot about my concerns — not even with my husband. But during my time at First Descents, I realized that my positive attitude was a crutch in many ways. I had a great community of friends and family, but they couldn't be there for me the way I needed because I hadn't opened up to them.

My time on the river also opened my eyes to new experiences. Kayaking made me realize that I was a water person, not just an ocean lover. Nature has such a healing power, and being able to share this experience with people who knew exactly how I felt made me realize that I needed more than just a positive attitude — I needed a real community.

I now live in Asheville, North Carolina, and I have explored the rivers, camped, and hiked — connecting with the outdoors as much as possible. I’d planned on returning to Seattle to work on boats for the summer, but COVID-19 shut that down. Next summer, I plan to apply to boat jobs in Alaska and explore that beautiful part of the country.

This has been a challenging year for so many, but it has also made me realize truly how important a community and nature are to my positivity. Camping and kayaking allowed me to keep my sanity, and the important people in my life helped me to never give up hope.


This article was written by MyMSTeam member Yajaira Carrasquel as part of the Member Spotlight Series.

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