- What mean this word, "can't"?
John Christensen is officially 1 in 25,000, but unofficially he’s more of a “1 in a million” type of guy. He has a genetic tendency (1 in 25,000) to grow tumors in his brain and body, but he uses his medical challenges to make him stronger (1 in a million) and to help children with the same affliction learn to cope.
At age 10 he was diagnosed with neurofibromatosis type 2— usually shortened to NF2. With NF2, non-malignant but still very problematic tumors develop in the brain, spine, and peripheral nervous system, resulting in muscle atrophy, loss of sensation, facial paralysis, mobility problems, and even death. Between his boyhood diagnoses and now (his college years) he has had several serious operations, including two brain surgeries and a spinal scoliosis surgery. His most recent removal of a tumor left him deaf in one ear.
Of his deafness he says, “since becoming partially deaf, I’ve come to realize that NF2 has made me stronger, and I’m proud of that. I’m stubborn not to let NF2 become an excuse for disability, and that has made me a more determined, hard-working person. Less than a month after this recent brain surgery, I was going to the gym for hour and a half-long workout sessions, shoveling snow from my family’s driveway, and applying for part-time jobs. Two months after surgery, I was ocean kayaking in Florida."
He happens to be a writer, so he wrote an essay about living life with NF2. Apparently it struck chords within the NF2 community because this past May the essay was published in a national NF2-related newsletter. It is titled “Waking” and it can be found here.
Never as a child had he known other children with NF2. As a young adult, for the first time in his life, he met other people with NF2. In West Virginia there is a summer camp for children diagnosed with NF – Camp New Friends – and he volunteered there to help them learn how to better live and cope with NF.
Of his blog (JimChristensen) and writing he says, “There’s so much more to my life than my disease and I use the written word — prose and poetry — to capture those other aspects. I’ve always been drawn to the outdoors and much of my writing can be categorized as nature writing. Specifically, I use nature as a framework to delve into questions of what it means to be human and alive on this planet.” His habit of focusing outward on the world instead of inward on his significant health problems surely must rub off at least a little on the kids at Camp New Friends . . . and that’s why he’s included here on OurRoleModels.com!
You can learn more about him on Project Light to Life's article, Living with NF2 - How This Condition Made Me Stronger