by Neenah Williams, Colorado Springs, Colorado
I was diagnosed with FSH muscular dystrophy at the age of 16. I am now 27 years old and have started to feel more of its effects. From an early age, I began to lose the ability to lift my arms higher than 90 degrees. That never stopped me from doing the things I enjoy, most of all dancing.
Fast forward to Christmas 2017. I was driving back home from visiting my family, and I had a thought ─ that I should do something wild and spontaneous in 2018. Life is too short, and I hadn’t been on a real vacation in a long time. I had a truly random idea that it would be awesome to climb Mt. Kilimanjaro.
I wasn’t sure what country Mt. Kilimanjaro is in or what type of climb it would be. I honestly decided to go on a whim. However, I believe that everything happens for a reason. So I researched the climb and, a couple of weeks later, I booked my trip to Tanzania.
At the time, I had never experienced weakness in my legs. But sometime last spring or summer, I noticed that my thighs were beginning to get the hollow feeling that I have come to associate with rapid muscle deterioration.
About a month before my trip, I realized that I could no longer walk on my heels, and when hiking in preparation for my trip, I began to fall a lot more.
A couple of weeks before I left for Tanzania, I scaled Pikes Peak in Colorado, 14,115 feet in one day. Three weeks later, I successfully summitted Mt. Kilimanjaro, the highest mountain in Africa, at 19,341 feet. It was one of the proudest days of my life.
The ascent took six days, and I carried my 15-pound daypack the whole time. It was more weight than I had ever carried on a hike, and was a challenge both mentally and physically. Also, altitude sickness was a concern. We were required to walk very slowly to keep our heart rate down.
The hikes each day ranged anywhere from four to seven hours. On summit day, the trek took about 11 hours, because we climbed to the summit from base camp and then returned to a camp at a lower altitude all in the same day.
On the day we reached the summit, I stood on top of Mt. Kilimanjaro with about 400 other hikers, unfurled my “Stronger than FSHD” sign, which I had made months earlier, and took my summit photo. I wanted to show this to all my friends who are struggling with FSHD. I doubt anyone else on the summit that day had FSHD, and for that I am proud. I had just begun to notice new weaknesses in my body, but did not allow that to stand in my way.
Many times, it feels like we stand alone against FSHD. My advice is to take things one step at a time, push your limits whenever you can, and soon you’ll be standing on top of the world.
We are stronger than FSHD!