Feeling Alive and Learning to Thrive

I am a summer baby and somehow, typically around my birthday, I find myself experiencing major life events.

I did not recognize my initial presentation of MS as MS related. Right around my 27th birthday, I had taken a couple of bad falls while testing for my green belt in karate. Days later when I laughed, sneezed, lowered my head, or became emotional, I felt a radiating numbness that traveled through my extremities on my left side. Concerned, I went to visit a primary care physician who upon checking my reflexes sent me to see a neurologist. He conducted an ultrasound of my neck and diagnosed a contusion on my spine. He suggested I wear a neck brace and consider Tai Chi as an alternative to karate. I didn’t think it was a big deal and opted out of wearing the brace. 

Three or four years later, I experienced a similar radiating numbness, this time affecting the extremities on both sides of my body. I reached out to the neurologist I’d previously seen and he was confident this had nothing to do with the previous injury. He believed he misdiagnosed what he saw on the ultrasound, and referred me to a neurologist at an MS center who diagnosed me with MS. My 30th birthday was marked by my introduction to subcutaneous injections and an unfamiliar fear. I now bore a label that I had not chosen and one that was not tacked on at birth. I had a preexisting medical condition. I had relapse and remitting multiple sclerosis.

My 30th birthday was marked by my introduction to subcutaneous injections and an unfamiliar fear.

The summer of 2019 brought significant life changes that left me feeling defeated, searching for the energy and will to reconnect with myself. In the midst of this darkness, my cousin asked if I had ever heard of First Descents. She shared that her colleague who had been diagnosed with breast cancer had attended an FD program, and since then FD had started serving young adults living with MS as well. We both thought it was worth investigating, so I completed the application hoping to hear back soon.

2020 happened and I all but forgot about the application.  Turning 40 and living 10 years with MS seemed small as I struggled to understand what was happening globally, nationally, locally, and personally. In 2021, I found myself still struggling to get out of the ditch I’d been stuck in for the past few years. Just when I needed it, I received an unexpected email from First Descents about an upcoming program and was immediately excited. Yes, I wanted to participate! I thought little of the fact that I knew nothing of kayaking, white water or otherwise. I just wanted something different. Surely if I can step off a plane and explore East Africa, I can navigate a weekend in Massachusetts. I both underestimated the trip and overestimated myself. There were so many unknowns that secretly left me uneasy. Can I swim well enough? I can float, but does that count? What will the dynamic be like for me as potentially the only black person in rural MA during this crazy climate? But I still qualified as a young adult; so I went for it!

The trip was scheduled for the week after my 41st birthday. I was the second person to arrive at the house and was challenged right away to think of a nickname. I met “Disco Panther,” our chef, “Scout,” our resident healthcare professional and was immediately intrigued by who they were and how they came by their names. A lead staff member threatened that if I did not come up with something on my own someone would do it for me. I became “Traveler”.

The location was amazing, the house was beautiful, the food was fantastic and the friends – we all became friends – were wonderful, brilliant, vulnerable, and acceptingly eclectic. We were all so different in every way with only one thing in common. Being away from the city was perfectly timed. We spent evenings by the campfire sharing and listening to each other. Laughing, empathizing, and relating beyond our diagnosis. For the first time, MS got me in instead of holding me back.

Once on the lake, I really believed I could kayak. Then I saw the river. I fought the water from the start. I actualized every fear. I knew I would be the first to turn. Within seconds on the river, I had set a record. I flipped. “Don’t stand, just float, grab the tail of my kayak” one of the guides directed. I could not seem to hold on. I was finally towed to the side to reset. I stared directly at the guide and with tears in my eyes cried “I’m afraid.” He knew. He was kind and encouraging and even made me smile when he said I “flipped perfectly” and recovered better than he would have. I found myself fighting the water out of fear and attacking the current with my paddle as if I could beat it into submission. I realized in so many ways this had been my approach to navigating life. I distinctly remember a guide yelling at me to “look in the direction I wanted to travel”. I paused, very aware that I had no idea where I wanted to go, other than to get out of the water. But I did not give up. 

Alone with my thoughts, after a long day in the water, I walked the perimeter of the property. I was really appreciating the relaxing calm of nature and the judgmental cows staring at me. It seemed as if they knew I enjoyed my burger way too much the night before. I felt beat up by the water. Challenged by the upper body strength needed to row. Hands weak because of my mercilessly tight grip on the paddle. Suddenly, now that I was not running on adrenaline, I was aware of the endurance required to get through the day’s activities. Chuckling at the realization that my legs were wobbly and my feet sore from the pressure I applied trying to steer the kayak with my lower body. I had some nicks and bruises, but I had done it. I stared fear in the face, fought through the adversity, and survived. I dreamed of the water that night and felt myself moving with the current although I was firmly resting in bed. The next day with some trepidation I prepared myself to face my fear again. I began the morning with Disco Panther’s banana pancakes and grabbed pocket pancakes mixed with trail mix for the road. I was ready to confront the river. I would not and could not give up. My team would not let me quit; they had my back and I had theirs. We tackled the water together because we had become a unit. I stopped working so hard to avoid going over the inevitable rocks along the path, realizing that I had to stop fighting life. Some obstacles cannot be avoided. I needed to stop rushing the gift that each experience offers and find acceptance with grateful appreciation for all the lessons.

Although I carried many of my fears and crutches with me to the program, I found myself ready to let them go. I see challenges differently and want to live and thrive differently. I am no longer interested in the ease of daily numbing or allowing insecurities to dim my light. When I reflect on the last 5 years, I can now see growth, not just imperfections. I still do not know exactly where I am going or what is next on my journey. But after my FD adventure, I know I do not want to live regretting the past, wishing away all the moments that have made me uniquely me. When I look in the mirror, I see a young woman who is a bad ass “Traveler” eager to continue Out Living It. Many things cause me to pause and think twice, but that’s a good thing. I will not let fear and uncertainty stop me from living, and that includes MS. 

I still do not know exactly where I am going or what is next on my journey. But after my FD adventure, I know I do not want to live regretting the past, wishing away all the moments that have made me uniquely me.

Thank you, First Descents. Thank you for the opportunity to meet Care Bear, K.B., Rebel, Tardy, Disco Panther, and Scout. Thank you for this unforgettable experience. Exposure is such a precious gift, and a privilege. I have quiet dreams about creating similar opportunities for underprivileged kids. I’m dreaming bigger and will not let anyone, or anything, stop me from trying…

First Descents programs for young adults living with MS are made possible by the generous support of Velocity Global and Genentech.