In 2017, the mother/daughter team Kathy and Beth Usher stood up in front of a rapt audience and pitched their book project to the Islanders Write Pitch Panel in the three minutes’ time they were allotted. Last November, Beth passed away. Our hearts go out to the Usher family. I have been in touch with Kathy, and she has given us permission to share the powerful story that they pitched that day in 2017.
This is a collection of nonfiction short stories about our experiences dealing with a life-threatening brain disease, written by a mother and daughter with alternating stories from their own individual perspectives and events.
Beth: In 1985, during the third week of kindergarten, I fell from a seesaw while waiting for school to start. Later that morning, I suffered a grand mal seizure, turning my entire life upside down. My seizures grew in number and ferocity. This was the beginning of a two-year search for a diagnosis. My surgeon was Dr. Ben Carson, former presidential candidate and now HUD secretary. Dr. Carson removed half of my brain to save my life. Mister Rogers became my very real friend, who gave me respite from my tortured brain. I am a certified Laughter Professional. I chose to wake up grateful for each moment of my life. My brother is a member of the Fire Departmen NY in Harlem and my very best friend. We speak about the importance of a supportive family and how love can truly heal broken hearts. It is my mission in life to make at least 10 people smile every day.
Kathy (Beth’s mom): The night before Beth’s hemispheretomy to remove her entire diseased LEFT hemisphere, my husband and I were paralyzed with fear and questioning if we had made the right decision. Our neurosurgeon’s chief resident stopped by Beth’s room to give us information on the procedure: when they would begin, how long it would take, etc. Before he left her room, he asked, “We are removing her RIGHT hemisphere, correct?”
Short Bios
Elizabeth Catherine Usher was born on June 29, 1979 –– a few hours before her mother’s birthday. A happy, precocious child, she was reading on a second-grade level in kindergarten and on her way to becoming a world-class ballerina and soccer star. A fall from a seesaw sent her into a downward spiral filled with drugs, hospitalizations, tests, loss of vision, and numerous seizures destroying her brain cells and the use of the entire right side of her body. Her only hope was to have a hemispherectomy –– the removal of her left hemisphere. She was the seventh patient in the country to have this surgery. After a successful twelve-hour surgery, she fell into a deep coma lasting for seven weeks. Mister Rogers visited her during this time, and when she woke they became lifelong friends. Years of physical, occupational, speech, and educational therapy have resulted in a strong young woman who has just launched an exciting motivational speaking career. She has spoken to an audience of over 600 on the topics of resilience, laughter, and gratitude.
Kathy Usher spent the majority of her career as director of undergraduate research at the University of Connecticut. Her job and experiences provided the tools she needed to conduct her own research for a diagnosis and cure for her daughter’s life-threatening seizures. The internet and worldwide web were not available at that time, and all of her research was done on her landline phone, at a multitude of medical libraries, and through handwritten letters. After searching frantically for two years as her daughter’s mental and physical health declined, she was led to Johns Hopkins Hospital and the famed pediatric neurosurgeon Ben Carson. Today, she and her husband are retired and spend their time as Beth’s personal assistants, driving her to and from her speaking engagements.