I was slowly walking on the pathway at camp when I noticed others wearing leg braces, and for the first time, I didn’t feel alone…
Last month, my youngest sister and I were on a plane heading towards the beautiful mountains of Oregon, near the coast and far away from daily stresses. This was not just like other trips I had gone on before. For the first time, I would be helping at a camp for kids with CMT. Camp Footprint is a week-long trip for kids 10-18 living with CMT. It's filled with activities like swimming, rock climbing, art & crafts, chair dancing, and time to connect with others that understand the daily physical challenges this neuromuscular disease brings.
I didn’t know what to expect other than being around others outside my family that live with CMT. There would be campers and some staff that struggled to walk due to muscle atrophy and drop foot, and those like me wore AFOs (ankle foot orthotics). For the first time, I didn’t have to explain why standing caused severe pain or fatigue. Everyone just got it.
Somehow, after only being at a week-long camp my life has changed. I have been blessed with another family. It’s another community of people young and old that live around the world who either struggle with this disease or care about someone who does. And if you have been around me lately, you will probably hear me bring up a story or two from camp. It was amazing!
How did I first hear about the camp?
I was in my early high school years when my brother was diagnosed with CMT. Camp Footprint started soon after, but I did not think much of it. Then a few years later, I was diagnosed with CMT and could have attended as a camper, but it felt too soon. I was not ready to accept it.
So instead, I decided to wait and help as a counselor. Each year that passed didn’t feel like the right time because of the progression of symptoms. I had doubts about my abilities and whether or not camp would be too much. I did help during one of the years when it was on Zoom. While it was a wonderful opportunity, somehow it didn't feel the same as being around others face to face.
This year, after months of praying, I felt like camp was an opportunity God was leading me to. So I traveled along with my sister, who attended as a camper. I pictured the week filled with encouragement and an understanding of limitations.
I had some deep conversations about pain or leg braces. I talked to others on staff that had lived with struggles from CMT for most of their life, which some of you will read about in September during CMT awareness month. And even though there were many occasions of laughter and joy, I found moments of sadness over the loss from this neuromuscular disease. I felt very encouraged by the campers and their level of strength and perseverance though they faced so many struggles at a young age. They didn’t let their CMT stop them from having a fun week at camp. And even though I was not a counselor, I helped organize the events and led the arts & crafts, so I still had the opportunity to encourage the campers.
What I learned from that week is:
No matter how much I fall, there will always be those helping me to get back up.
I can choose joy and a positive outlook even when pain is overwhelming.
It’s fun to try even if it feels silly or outside my comfort zone. Such as pretending to have a German accent at a talent show as a choreographer/judge.
Encouraging the campers
Before the campers arrived, all of us staff gathered in a circle to answer a question, “What is your footprint?” This was mostly to share how we hoped to get out of the week. I wanted the campers to know they are capable of more than they realize.
I know that when it comes to living with physical limitations and a progression of pain, there are dreams that feel unreachable. I didn’t believe I would ever finish college or continue in dance. But, I did. And I’m still following more dreams even though some are different than I planned. And I felt like I accomplished that goal as I witnessed some conquering their fears of heights as they tried a rope course or a rock climbing wall. Even though it may seem small, it was a big step. I'm sure in the past, many of these campers would not have believed how capable they are of doing so much more despite the physical limitations.
My sister and I are already looking forward to camp next year! The CMT community has positively impacted my life, so I hope to continue making a difference for this next generation through volunteering.