How do you possibly rewrite your life’s script after suffering a massive brain tumor? Through a detailed, first-hand account, Janet Johnson Schliff answers this question and reflects upon losing the life she knew in her 2018 novel “What Ever Happened to My White Picket Fence?”
Schliff recently visited the Marlboro Free Library as part of her 2019 book tour. With hand-crafted brain earrings dangling from her ears, she spoke candidly about how an orange-sized brain tumor changed her life forever.
For 25 years, Schliff taught as a special education teacher. During her career, the New York Commissioner of Education granted Schliff a medal for her excellence.
However, without any medical explanation, Schliff’s abilities swiftly deteriorated. Obsessive-compulsive behavior gnawed away at her day-to-day life, and for four years, Schliff struggled with mysophobia, the fear of germs.
It was the spring of 2007—two years before discovering the tumor—that marked the end of Schliff’s teaching career.
“I couldn’t answer the phone, I couldn’t turn the doorknobs,” Schliff remembered. “I couldn’t even hold the chalk in my own classroom because someone else had touched it.”
After persistent complaints of intense headaches, Schliff’s psychiatrist finally wrote her a prescription for a MRI. On June 26, 2009, doctors discovered a massive tumor in Schliff’s brain, and immediately rushed her to New York University (NYU) Medical Center.
Luckily, out of the 160 types of tumors, Schliff possessed the most treatable—benign meningioma. Less than two weeks later, Schliff’s tumor was successfully removed, completely ridding her of mysophobia.
“I was getting wheeled out just three days later. My sneakers got lost and I was walking on the sidewalk in Manhattan with these skinny little socks on,” Schliff said, her eyes beaming. “Here I am dancing on the sidewalk out of NYU because I was so darn happy that my feet were touching a dirty sidewalk again, and they could!”
Unfortunately, Schliff’s trials did not stop with surgery; new lifelong challenges filled the void that the obsessive-compulsive behavior left. At the book talk, Schliff spoke extensively about her issues concerning balance, counting change, and aphasia.
“Some people with brain injuries may look normal and have excellent vocabulary. But you have no idea what is bubbling right beneath the surface.
There are so many of us walking around but no one would know it,” Schliff said.
An acquired brain injury (ABI) is any injury to the brain that is not hereditary, congenital, degenerative, or induced by birth trauma, according to the Brain Injury Association of America. Typical causes of ABI include a stroke, seizure disorder, overdose, and tumor.
Every nine seconds, someone in the United states sustains a brain injury.
According to the New York State Department of Health, in New York State more than 500 people sustain a brain injury each day, and prevalence is estimated to be 50% higher than reported. “That’s why I had to do this,” Schliff explained, “so hopefully caregivers, family members, loved ones, friends, colleagues, fellow church goers or anyone else can try to help those of us with this condition to navigate life as well as we can.”
During her talk, Schliff highlighted the importance of awareness—taking note of any abnormal behavior and listening to problems family members or loved ones say about their health.
“I’ve often found out that it is very difficult to get people to listen, whether they are in the medical field or whatever,” a woman in the audience commented during the Q&A portion of the night. “That’s one of the things I’ve found very disturbing when you have someone who, just because they have a medical degree, doesn’t seem to have any listening, hearing, common sense. So you’re always just batting your head up and down.”
The impact a brain injury has on family and friends is undeniably detrimental, usually causing people to give up or distance themselves from their loved one with a brain injury. During the four years Schliff wrestled with mysophobia, her family kept her at an arms distance. “I drove them all crazy,” Schliff admitted, “but then when the brain tumor happened, they all came out of the woodworks and took such good care of me.”
However, once the anti-seizure medication negatively impacted her behavior, her family retreated. The only person Schliff remains in touch with is her mother.
Despite her rough comings, Schliff exudes no negative energy. Instead, she preaches empathy and challenges people to be always kind, for they do not know the personal battle another may be facing. According to Schliff, her novel aims to “let the world know that brain injury is very common, and we all have to figure out how to take care of each other better.”
“It’s just having everybody take a closer look at everyone, to understand each other’s differences better,” Schliff elaborated.
Schliff continues to speak out about brain injury awareness at libraries, churches, book stores, senior centers, hospitals and support groups of brain injured people such as the Fishkill Ability Center.
To hear the animated Schliff speak about her novel “What Happened to my White Picket Fence?” visit the Newburgh Free Library on Monday, July 29 at 7 p.m.