When illness or disability strikes, it can be devastating. Whether it happens suddenly or worsens over time, it can turn lives upside down. It's not uncommon to react with depression, anger, hostility, fear, or anxiety. But after a period of time, most people adjust and find ways to live in their new normal.
Remarkably, some individuals transcend all expectations, and their condition inspires them to be even stronger. They discover they have more tenacity and resilience than they ever expected. Some channel a creative force they didn't know they had. Some refocus an already special talent toward educating others about their disease.
When I come across patients like these in my practice, I am amazed and humbled. I recall one man who sustained a severe traumatic brain injury and could no longer work. He began to paint instead. Each time he came to my office he brought a bright new watercolor from his collection. Another woman began to express herself through poetry after she lost her voice, and yet another was inspired to design quilts.
In this issue, we feature four artists and their remarkable achievements after they developed neurologic problems. Paula Hayes creates gorgeous blown-glass terrariums in flowing, futuristic designs influenced by her experiences with temporal lobe epilepsy and an intriguing condition called Alice in Wonderland syndrome. Jazz trumpeter John McNeil, who was born with Charcot-Marie-Tooth disease, which damages peripheral nerves, became a lefty and learned to play all over again after he lost control of his right hand, and became an even better player. Sculptor Rebecca Kamen, who has dyslexia, finds inspiration in the wiring of the nervous system. Documentary filmmaker Jason DaSilva, who has primary-progressive multiple sclerosis, turned the lens on himself to show the world how the condition affects his daily life.
You don't have to be a professional artist to express yourself creatively. Melissa Robillard (“Readers Like Me”) was 5 when she was diagnosed with leukodystrophy, a rare neurologic disease that affects the central nervous system. As her language and memory deteriorated, she and her speech therapist began to craft a children's story that ultimately became the inspiration for a book. Snowball's Great Adventure was self-published last year. And the 45 adults with a range of neurologic conditions who comprise the chorus Joyful Noise (“Noise Makers”) are so astonishing that after hearing them perform this May, my parents, who were in the audience, insisted that I tell readers about them.
Finally, our cover subject Christopher Jackson, the Broadway star best known for his Tony-nominated role as George Washington in the hip-hop musical Hamilton, whose son, CJ, has autism, was part of a group that collaborated to create Sesame Street's Julia, a 4-year-old Muppet with autism, who debuted on the show this past April.
If your condition has a silver lining, tell us at NeurologyNow@wolterskluwer.com.
Orly Avitzur, MD, MBA, FAAN