Muscular Dystrophy Association Camp ~ Compassionate Care in Medicine

“I can’t even walk. Did you know that? And I might have to get surgery where they’ll cut my back open. Did you know that?” The forty-nine pound eleven-year-old examined me with inquisitive eyes, waiting for my reaction for what she considered startling news. I actually hadn’t known this, and I was unsure of how to respond to the pre-teen sitting on the bunk in front of me. “Well,” I said, “I’m sorry that is the case for you, because I know that it is not easy.” She nodded with conviction and looked down at the ground. I guided her arms through the arm holes of her sweatshirt and popped it over her head. After I made the necessary adjustments for comfort, I looked her in the eyes. “The thing is,” I assured her, “you are a really strong girl.”

And she was a very strong girl. She exuded strength in her perseverance and resilience, like many of the other campers at the Muscular Dystrophy Association camp that I volunteered at this June. Physically, however, this child was extremely weak. Almost 75 of these week-long summer camps are offered throughout the United States for children ages 6-17 that are affected by muscular dystrophy or a muscular-debilitating disease. Because of generous sponsors and donors, the children are able to attend camp at no cost to their families, and they enjoy a week spent with other children with conditions similar to their own. At MDA camp, each camper has the ability to feel much more “normal” as they are able to participate in each of the planned activities with little to no inconvenience. These include ziplining, swimming, canoeing, horseback riding, a variety of crafts, and much more. In addition to the excitement for the activities, the campers delight in reuniting with friends that they met in previous years and in forming new friendships. Despite living hundreds of miles away from one another, two of the campers in my cabin arrived in matching outfits, announcing immediately that they were “best friends” upon introduction. They had met at an MDA function several years earlier.

Though I knew that the camp was a very special week for the campers and that it might require personal caregiving on my part, I was truly unsure of what to expect upon arrival. Each camper is paired with a trained volunteer as their caregiver for the week, and the needs vary from no help needed to help needed with everything from eating to bathing. As I packed my suitcase, I recall checking off my extensive list and yet still feeling unsatisfied. Not knowing my camper, his or her needs, or even if he or she would like me, I remember thinking that there was not really any way that I would be able to prepare for the week that was to come. I knew that it was going to be a week of emotional and spiritual growth, and I was filled with anticipation, eager to meet my camper and gain a new perspective on the lives of those with life-long diseases.

I ended up being placed in the eleven to twelve-year-old girl cabin and was paired with a sweet eleven-year-old who had attended camp for a few years already. She was ambulatory, which meant that she had the ability to walk. However, she would often become easily tired, so we used a wheelchair on most excursions. The campers arrived one-by-one, possessing a variety of physical ability; some walked in a completely normal manner, while others walked in more of an unique fashion, inhibited by leg braces and assorted devices. A few of the campers had scooters that they could choose to use when needed, and a couple were limited to power wheelchairs. The girls were unafraid to ask one another about their vehicles or medical equipment, and viewed each other as equals; there were no “disabled” campers anywhere to be seen. Instead, our cabin was filled with a group of twelve normal pre-teen girls, excited for a week filled with special activities. The challenges I thought that I would face in caregiving or in helping the campers never came to fruition. Alternatively, the challenges lay in dealing with typical pre-teen girl behavior and attitudes as the week unfolded, opening my eyes to the reality of these girls’ normalcy.

Throughout the week I gained perspective on how these muscle-debilitating diseases truly affected the campers on a physical and emotional level. Everytime my camper wanted to stand up, she would patiently wait for someone to help hoist her torso upward before she gained footing. When we got dressed in the morning, she needed help with certain items of clothing, particularly socks. After selecting a satisfyingly colorful pair, I would slide one over her foot and fix the lining of the sock until the seam was aligned adequately with her toes for comfort. The luxury of adjusting my own socks had never occurred to me; in fact, I never even thought about it. These children, however, have been forced to think about simple procedures like this throughout their lives, relying on others everyday for help that is anything but menial. For them, their dependence makes the simplest task into one of the many elaborate systems that constitute their everyday routine. This dependence is part of what makes their week at MDA camp such a special one. The campers are provided with ample opportunities to do activities that they might not normally be permitted to do, allowing them to excel in newfound ways and discover more about themselves. In addition, they are able to build important relationships with campers and counselors alike, promoting independence and personal growth.

The week went by with surprising speed. Personalities unfolded, counselors grew to anticipate their campers needs, and many special memories formed. Before we knew it, we were packing up and saying goodbyes and until-next years. As I was leaving the campground, I followed a faint voice yelling my name to a minivan parked at a pickup location. I squinted to see who was calling me. I walked closer and realized it was one of the campers from my cabin. She gripped the top of the half-rolled window and rested her chin on the glass longingly, waiting for her mother to return from the nurses’ station. I said a final goodbye to her and we wished each other well. “Only, like, three hundred and seventy days until next year’s camp,” she stated, tears welling in her eyes. “Wait, no!” she corrected herself. Her mouth stretched into a satisfied smile, “Just three hundred and sixty.”

Though it definitely had its challenges, MDA camp was all-in-all, a remarkable experience. God’s love radiated everywhere; it was apparent in the generosity of the volunteers and staff, in the persistence and patience of the campers, and even in the shouts and giggles of seven year old boys racing around the campground, chasing one another on powered scooters. Referred to by many of the campers as the “best week of the year,” MDA camp opened my eyes to the meaning of true human dignity. The smiles and laughter of the campers will remain in my memory forever as a testimony to the importance of this time for them, and I definitely have a newfound respect for all those who live with a muscle-debilitating disease and their caregivers. In addition, I feel I have a better grasp of what it is truly like to live with a life-long disease, all that this challenge entails, and the significance of quality care.

As aspiring members of the medical community, it is important for us to view patients as people, and provide care that helps them in all aspects of their lives. Many of these children need special care from the time they are infants through their adult life. They grow up with frequent doctor visits and physical therapy appointments, perhaps looking forward to chatting with their favorite practitioners or receiving a sticker or sucker before they go home. They become familiar with their medical staff and build important relationships within their care teams, making frequent visits less of a nuisance. And that is just the thing: there is so much more to a person than their disease. She is not just a “Spinal Muscular Atrophy Type 2” or “Congenital Myopathy” or “Charcot-Marie-Tooth Disease” eleven-year-old girl case. She is a girl who loves to play basketball and dreads the day when her muscles will fail her and she can no longer participate. She is a girl who loves swimming because the water allows her to stand all on her own. She is a girl who likes her socks a certain way, so the seams line up perfectly. She is a girl who dreams of having children, though her predicted life span affects her chances. She is an eleven-year-old girl who happens to have a muscular-debilitating disease. And someday, you might have the opportunity to be the doctor that treats her as so.

For more information on Muscular Dystrophy, you can visit https://www.mda.org. Additionally if you post on any social media with the hashtag #LiveUnlimited, one dollar will be donated to the Muscular Dystrophy Association!