First President of the Virginia Bio Board has lost her battle with ALS
Tuesday, November 7, 2017
Hollister Lindley, founder and president of the board of Virginia Bio, who had suffered from ALS since 2008, died on November 3, 2017 at home with her husband, Richard Kern, and his daughter, Rachel, her only immediate survivors, at her side.
Formally called amyotrophic lateral sclerosis, and informally known as Lou Gehrig’s disease, ALS slowly killed off Ms. Lindley’s motor neurons and caused her to lose muscle movement. Losing use of her hands for writing, cooking and for feeding herself was especially hard.
Hollister had a variety of careers ranging from model, water aerobics instructor, eventually landing in the medical equipment industry.
Passionate about food all her life, she was an accomplished cook who studied food from a cultural standpoint. For half a dozen years as a local restaurant reviewer for Richmond magazine, she cheered on Richmond’s growing food scene and food makers.
While she was visiting cousins in California in spring 2008, Ms. Lindley, adept at using chopsticks, dropped hers during a meal. That marked the beginning of a series of severe muscle and neurological challenges of elusive origin, fraught with temporary fixes, multiple diagnoses, surgical procedures, invasive tests and consultations.
Three years later, her doctor finally figured out what was wrong. She recalled that 2011 day in a 2014 Richmond Times-Dispatch interview.
Her physician, Dr. Ted Burns at the University of Virginia, had just performed an electromyogram on her, a procedure that stimulates muscles with painful electrical impulses and measures their reactions to the induced muscle contractions.
“And he came in,” Ms. Lindley said, “And I thought Ted was going to cry ... and he sat down, and lowered his head and gathered himself and looked up and said, ‘You have a motor neuron disorder.’
“I said, ‘ALS?’ and he said, ‘Yeah.’ I said, ‘Anything we can do?’ He said, ‘No.’ He said, ‘The good news is ... that it’s moving like molasses. You’re going to be the rare case that it’s going to be frustrating before you die.’”
Ms. Lindley learned everything she could about ALS. She attended research meetings, lobbied in Washington for more money for ALS research funding, and used social media to advocate for a cure and encourage fellow travelers with the disease. She donated blood, skin and spinal fluid to help researchers better understand the differences between healthy cells and those affected by ALS.
With no standard progression in ALS symptoms, she found that the uncertainty, the helplessness, the dependence and the vulnerability of not knowing what would happen next or when could be unnerving.
“I have about three meltdowns a months, where I simply put the covers over my head and cry,” she stated in the interview. “And I allow myself that. ... Aside from that, it’s not like I have choices. ... I don’t think there’s any kind of psychic karma that’s given this to me. I think it’s a roll of the dice, and I ended up with snake eyes.”
By 2014, she was unable to eat most food on her own, cook or get out to eat. She had hired someone to walk her 99-pound goldendoodle companion, Cormac. The woman who loved to go everywhere and do everything was hardly leaving home.
However, she kept up a lively presence on Facebook and Twitter and for a time wrote a column called “Living with ALS” for the Richmond Times-Dispatch.
Friends, many of whom had shared food adventures with her at local venues, came to bring food or cook for her, to help her with personal care, or sometimes just to hold her hand. They arranged multiple ALS benefits at area restaurants and got her out of the house to socialize at area pubs as long she was able.
A pragmatist at heart, Ms. Lindley and her husband planned ahead for the time when she became totally disabled, arranging for power of attorney and medical procedures she might apply to make her comfortable, as well as choosing a funeral home.
“I think the issue is, ALS doesn’t own me,” she said. “I ... own ... it. I’m not going to let it define who I am. I’m not going to let it tell me what I can do.”
She was triumphant when she lived to be 65. She was 66 at her death.