I was diagnosed with my disability at the age of three. In fact, one of the earliest memories I have is the hospital stay when I had my muscle biopsy to confirm my diagnosis. Disability has always been a way of life for me, just one part of who I am.
I never had other peers with mobility impairments of their own until I went to summer camp. The camp I went to was designed for kids with all types of disabilities – muscular dystrophy, cerebral palsy, spina bifida, all types of developmental disabilities. At camp, we all needed assistance. Many of us walked “funny” or used wheelchairs. For the first time, I was surrounded by others who knew what it was like to be different. Camp introduced me to people of all abilities, and camp introduced me to Jen.
Jen and I were bunk mates in Yellow Cabin. Our beds were in the far corner of the square room and we shared a cubby for our clothes. We both came from small towns where we were the only wheelchair users in our schools. I was still walking most of the time when we first met but Jen had recently undergone surgery on her spine so she was adjusting to life without walking.
For eight summers, we were camp friends. Three years into our friendship, we realized we only lived an hour apart “in the real world” and started begging our parents to let us visit each other on school breaks. I spent part of each Christmas vacation at her house. She came to my house for weekend visits in the spring. I am grateful our parents recognized our need for peer support and sacrificed time for us to nurture our friendship.
Neither of us considered ourselves part of the “popular” crew at home, but at camp we were the girls everyone looked up to. We were able to be helpers ourselves, often assisting other campers with eating or hair dressing. Jen would bring all her makeup and hair accessories to camp, many days spending an hour getting everything just right. I would sit writing in my journal, whining about how we could be out on the porch flirting with the boys if she would just finish! Truth is, neither one of us was secure enough to do anything with a boy then but that didn’t stop us from talking about what would happen if we managed to find boys who would like us despite our disability.
Back then, we were genuinely worried we would never find romance. Of course we were wrong, but try telling that to two fourteen year old girls who were trying to develop healthy body images yet never saw anyone who looked like us in the mainstream media. Those girls were all thin, athletic, walking. They didn’t have hip or arm contractures, scoliosis or poor trunk control. We couldn’t control our bodies, so we learned to play to our intelligence. Gradually, we grew in self-esteem and realized we were desirable in our own right. Beauty comes in all shapes and sizes, in all levels of physical ability, and is more than one’s ability to maintain an upright posture on a set of high heels.
As adults, our peer support continued. I was always free to be vulnerable with Jen. She was the one person who understood exactly what I was feeling as she had usually experienced something similar. We talked about adjusting to life at college and using personal assistants for care. We discussed sexual exploration, laughing at our failed attempts at intimacy. We encouraged each other when our respective diseases progressed, causing changes in our functional abilities.
Jen’s wedding day was the day after Thanksgiving so every year on this holiday, I think about her rehearsal dinner – a turkey feast for everyone who traveled to be there for her special day. I was one of her bridesmaids and spent the night before the wedding at her house. We talked until 1:30 AM just like we used to do at camp. I was considering the move to a power wheelchair. Jen didn’t laugh at my concerns or call them ridiculous, she just listened and matter of factly told me to face reality. I remember the twinkle in her eye as she said, “You only have so much energy to use each day. Do you really want to waste all of it stubbornly proving you can still wheel yourself?” Jen was right about this, and I have recalled her advice many times in the years since. How do I want to spend the precious energy I am given each day? It is a good question for all of us to consider.
Like me, Jen never set out to be an inspiration. She considered it a blessing to be able to assist and encourage others – and she was a role model of perseverance to many. We had countless discussions about how the nondisabled, unaccustomed to disability, perceived our lives. agreeing that having a mobility impairment was not the worst thing one could face in the world. If others were inspired by our lives, we were pleased to have made a difference, but we weren’t living our lives to serve as inspirations. We were just doing what needed to be done, the only way we knew how.
Jen lived longer than many in the medical field said she would, but sadly died in 2007. At her memorial service, the minister spoke of her kindness and generosity. Jen lived and loved every day, an example of grace for the rest of us. I think of her daily, remembering her smile and no-nonsense attitude. I do my best to live as she did – spending energy on what truly matters, telling those I love how much they mean to me and how grateful I am to have them in my life.
Jen – you were my confidant and my first friend who truly understood life with a disability. I am indebted to the expertise you gave so freely, and the support you offered throughout our friendship. Your beauty, which took you some time to recognize, was always visible to the rest of us who witnessed your spirit. I miss you.