|"John Lighting the Stage" 30" x 24" Oil on Canvas|
John was diagnosed with neurofibromatosis (NF 1) at birth and is the only one of his parent’s three children to have it. He inherited it from his mother, and she from her father.
As John went through grade school, it was discovered that he required an exceptionally long time to complete his homework, especially assignments that involved a lot of reading or written essay type answers. His learning disability, though perhaps mild, has been present enough that it has always affected him through school, college, and in his working days, all leading to social and career shortcomings. John has a somewhat slower processing speed, trouble learning and remembering new information, and trouble organizing and verbalizing his thoughts. Neuropsychological evaluations have noted findings consistent with diagnosis of a learning disorder.
In 2005, an MRI revealed a small cystic lesion, likely a pilocytic astrocytoma, in the pons of the brainstem. Though seemingly asymptomatic for years, it warranted follow-up MRIs every 6 to 12 months. Each scan showed about the same as the previous one: very slight growth of the pontine cyst but otherwise unremarkable and no new apparent problems -That was until early 2013.His neuro-oncologist, Dr. Paul Moots, prescribed two different types of chemotherapy pills that year, followed by radiation treatments in the Spring of 2014. Nevertheless, the cyst continued to expand and by now was compressing onto the brainstem. It was around this time that John began having problems with his balance and difficulty walking. A sensation of tingling numbness that started in his right fingers slowly worked its way up further into his hand; then by late 2014 his right arm, leg, and foot too. A simple task such as picking-up an object or buttoning a shirt became a challenge. His handwriting was now atrocious. He was also beginning to experience double vision. Something more had to be done.
John had two craniotomies at Vanderbilt in the Spring of 2015 to remove the pontine cyst; what his neurosurgeon would describe as “an incredibly complex neurosurgical problem”. This was followed by an intense headache which prompted a third hospital stay and a diagnosis of meningitis.
NF doesn’t really affect him much in a physical way, at least not in terms of pain, mobility, or appearance. He has some café-au-lait spots and couple other bumps. The double vision in his left field of view remains. There is also a long surgical scar on the backside of his head that can easily be covered-up with hair. His main concern now is in trying to better understand how NF affects him in more cognitive, expressive, and semantic ways or if there is something else at play too.
For the past 15 years or so, John has volunteered with a local community theater, the Oak Ridge Playhouse. His experience includes over 40 productions, working backstage in any one of a variety of positions: stage manager, assistant stage manager, follow spotlight, light board operator, deck crew, and the props team. John’s favorite position for musical productions is operating one of the spotlights in the theater’s catwalk. From this somewhat-private balcony vantage point, he can contribute directly to the show with the added benefit of viewing the show. He is a self-described “spotlight hog” -only not in the light, but behind it.
John is appreciative of Rachel Mindrup’s artistic talent and thankful to help shine a light on NF.