"No Child Left Inside" · Accessibility · Adaptive Parenting (an adventure itself) · Conversations with Kids · Family life · Through the Power of Sport

Christopher and Dana Reeve Blog for September 29, 2017: “September is Spinal Cord Injury Awareness Month”

Doesn’t every little girl want a Paralympic wheelchair racing Barbie doll? Ours did when she was four, and it remains one of her favorite toys because “wheelchair racing Barbie is fast, has fun hair and good clothes.” Last year this time, our family was all about the Olympics and Paralympics, discussing how they are alike and how they are different. We also have friends competing in the Special Olympics so we add all that into our Venn diagram of competitive sports, resulting in a lot of questions. Our family, young children included, competes in one triathlon a year, and ours wonder why their dad is sometimes the only one racing in a wheelchair or a hand cycle– and Geoff explains how at the Paralympics everyone has some kind of physical disability. Her reply is, “That is so cool.”

So, while it is cool that hundreds of Paralympic athletes compete with one another every four years, the fact that they were either born with or at some point challenged with a profound physical disability through a traumatic accident or injury is not exactly cool. Yet, Greta’s observation, I think, is the cool factor comes from these athletes still being able to compete in different sports.

Geoff has a long, visible scar on his back from the operation following his spinal cord injury, but many times he injures himself and has to explain to the kids he doesn’t feel pain the same way we can. He once broke his toe maneuvering into his racing wheelchair. Of course, he did not know or feel that he had broken his toe due to his level of injury (he is T7-8), but as we chased our children, fished, and prepped dinner, I noticed his foot kept spasming. He gave us all a lesson in autonomic dysreflexia, which is the way the body can still communicate to its owner that something is hurting or bothering the nerves in the injured or affected area. The neighborhood kids crowded around his wheelchair as he touched each of this toes; when he got to the injured one, his whole leg spasmed making them all jump. Trying to understand the complexity of the body’s healing and protective qualities is a wild thought; how cool it is that one’s body finds other ways to communicate when he or she is not happy if the actual pain receptors don’t make it to the brain.

Little kids like to touch Geoff’s legs to see if he can feel them. He cannot. Yet, he lets them pinch his toes, check his knee reflex, pull his leg hairs– within reason. I remember first dating Geoff and being on his best friend’s boat on Lake Winnipesaukee. His little boys were 7, 8, and 9 and the middle one was forever playing that game, “Can you feel this?” and touches a part of Geoff’s leg.

“Nope,” Geoff would smile.

“But can you feel this over here?” he’d repeat knowing the answer is still “No” but Ryan was still curious about the actual line of demarcation and just not able to help himself from asking. He would smile this quirky grin completely awed by Geoff’s consistent “no” response. He loved wheelchairs so much he even asked Santa to bring him one for Christmas. This same young man, now halfway through college, literally picked Geoff’s 6’2” frame up on a boat this summer to carry him off because the dock was tricky for a regular transfer. I should have taken a picture; this full circle photo of being on a boat with Ryan, first as the 8 year old obsessed with wheelchairs and now the giant grown up who can carry his almost uncle off that same boat with barely a struggle. I should have taken a photo of the moment but couldn’t because I was too busy tearing up, lost in the memory.

What does awareness mean? Awareness is making something visible, recognizable, more accessible and less scary. Building awareness is bringing hand cycles and mono skis into elementary classrooms so children can compare how we walking people ride bikes to how sitting people ride bikes. This is why September is Spinal Cord Injury Awareness Month– to help make people AWARE of how much is complicated and complex and cool about our spinal cord, regardless of how much we feel.

Heather Krill is a writer- wife- teacher-mom who lives in the White Mountains of NH with her husband, Geoff, a paraplegic and professional skier, and their two children, Carver and Greta who are 7 and 6. Please check out her novel True North, website www.heatherkrill.com, and @heatherkrill1 on Twitter.

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