“Nothing is there – nothing is there – nothing is there – nothing is there,” she murmured half-heartedly and with an infinitesimal sense of hope, like a grain of sand on the beach.
“Nothing is there,” she repeated, because everyone, from doctors to family, said it was hallucinations. They had grown tired of unabated picking at her chin and finger in her mouth, pulling out imaginary pieces of plastic, wavy metal, beads, rubber bands and ribbon.
The worst was when she believed her teeth were falling out.
No one but she knew that sometimes the rubber bands that didn’t exist were so tight across her chin, it hurt. She could feel the deep lines left in her skin as proof – at least to her – something was there.
Her teeth would bind tightly together but then the ribbon and rubber bands became lengths of chain or rosary beads.
Then the tears streamed like a warm rain as she whispered to herself: “Make it stop. Oh, God, make it stop.”
The hallucinations were not all she had grown to hate. She and her husband politely termed the bane of her existence “episodes,” although they were more like seizures.
Similar to the hallucinations, episodes were frequent, unrelenting and exhausting. She writhed, twisted, shook and hyperventilated until she fainted. They happened at home, in stores, at the movies.
It was a source of indefinable sadness and embarrassment, as concerned people gathered around. “Should we call 911?” “Is she OK?” “What’s wrong?”
And her husband, the only person she heard, would later tell her of his response: “No, she’ll be fine” and described what was happening. In 20 minutes, she was back to normal. Actually, the correct recovery time included a two-hour nap.
Much of the time, she felt pathetic, helpless and wordless. She spent most of her time alone in the quiet of their home.
For nearly a year, her life was a series of incorrect diagnoses, from an alphabet soup of magnetic resonance imaging (MRIs), X-rays and blood tests.
She was fatigued, light-headed and lost her balance fairly regularly. And she could not sleep.
As she waited for the fifth appointment with yet another new neurologist, she was also awaiting another electroencephalogram (EEG) to measure brain functions, while four other doctors remained completely baffled.
Staying at home with little to concentrate on, she wondered: What did she have to say about anything? She could offer nothing to conversations, aside from watching the stunned look on the faces of those few to whom she still spoke.
She was smart, she knew, not brilliant but passable. Yet questions like “Did you read …?” were always answered with no, she hadn’t.
Who is this person, she wondered, and what became of who she was compared to the person she was before? She possessed no discernible eye-hand coordination, and even the simple test of buttoning a shirt was overwhelming.
Conversely, she often traveled with her husband, Don. She loved watching sports and arguing about the evening news and investigative journalism stories with the man she had loved for so many years.
Married for 41 years, her illness brought them closer, although she knew she drove him crazy, which he readily denied. She loved him even for that. His strongest caveat was he didn’t want her on ladders or standing on chairs to rearrange decor, since her balance was similar to someone who was heavily intoxicated.
The part of her that wanted so much to help others was quickly overcome by the realization she couldn’t finish anything she started. Her mind was muddled, and her hands shook and nothing changed.
Most of all, however, she knew in her heart love was more powerful that any illness. Perhaps she was the person whose threw the starfish back into the ocean, giving wings to the starfish’s innate desire to live.
“She” is Amy Chubb, a writer who holds an undergraduate degree in journalism and a master’s in business, both from California State University, Fresno. She is a resident of Coarsegold, where she lives with her husband and two, rather odd, dogs. They have two children and three grandchildren. She is the former executive director of Fresno Works for Better Health Advocacy Center, funded by the California Endowment.