Monday, August 1, 2022

Case Study #104 - John Lighting the Stage

"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.

Prep Sketch

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 cafĂ©-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.



Saturday, May 7, 2022

Case Study #105 - Elizabeth Enjoying the Kentucky Derby

 

"Elizabeth Enjoying the Kentucky Derby" 2022. Oil on Canvas. 30" x 24"

Elizabeth Keller is from Louisville Kentucky. She was born with NF and inherited it from her biological mother. She was adopted at six weeks old. Over the years, Elizabeth has had 5 surgeries to remove some of the painful tumors. One surgery was when she was a toddler to remove a tumor in her groin area, twice when she was 13 to remove tumors on her knee that grew back and at 16 to remove some tumors on her back and arms. Besides tumors, NF causes migraines. Some of her tumors are very painful even to the touch. Because she was adopted did not know anyone else with NF until she became and adult and found various Facebook communities.

Prep Sketch

Raising NF awareness is important to Elizabeth because she wants the unaffected population to realize that it is a genetic disorder not a contagious disease. She has had many hurtful stares, people pointing and saying hurtful things to her. Her boyfriend and her son, who does not have NF, continue to be her strength to persevere. She has participated twice in the Cupid's Undie Run held in Louisville, Kentucky and was the 1st place individual winner for highest fundraiser one of the years. In her free time, Elizabeth loves to create realistic zombie make up and costumes and show them off during Halloween.