My friend chose an assisted death in Switzerland. Her dying wish was to tell you why
Updated 7:15 AM ET, Sun June 7, 2020
(CNN)Shortly after 11 a.m. on December 16, 2019, Cindy Siegel Shepler drew her last breath in a spartan room in Basel, Switzerland.
The 62-year-old American twisted a knob on her IV pole and soon fell asleep for the last time.
I had stayed with her and her husband David in Knoxville, Tennessee, for their last three nights at home before they left for Basel. And I spoke to her for the last time about 12 hours before she died.
Cindy had been forced to give up a high-powered corporate career at age 35 and struggled for decades with a handful of painful diseases. She spent much of her time seeking new treatments and advocating for medical research, knowing she might never benefit from her labors.
When it finally became clear that no drug could relieve her intense suffering, she chose voluntary assisted death, a procedure that's not legal in her home state.
Her dying wish was for me to tell her story, with the hope that it would help the cause of all Americans one day having access to this kind of death with dignity.
"I've worked so hard as a volunteer," she told me on her penultimate day. "It has to mean something. And you're giving me that gift."
We bonded over a shared desire to help the sick
Ours was an unlikely friendship.
When I knew her she was more than twice my age, married, Jewish, lived in a different state, almost entirely housebound because of her illnesses. I was in my 20s, single, Christian and trying to spend my free time traveling around the world.
But one thing we shared was a diagnosis: myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
After she watched a feature-length documentary I'd directed about the disease, she somehow got my number in early 2017 and cold-called me to procure my help with an advocacy project. "I'm your biggest fan," she said.
Over the next two and a half years, the fandom became mutual.
She was one of the most uplifting people I've ever met, and she poured her spirit into me.
With every piece I wrote for CNN, she would send me messages like, "Ryan, do you realize how incredible this is? This could be your Pulitzer!"
She suffered from many painful illnesses
Two major themes emerged from her life story: She was frequently suffering, but she was also often on the frontiers of social change.
As she grew up in the 1960s in Knoxville, Tennessee, she became one of the first girls in town to have a bat mitzvah. Later she took a gap year in college before it became fashionable, became a vegetarian and walked in the first AIDS Walk in San Francisco in 1987.
Those themes converged in her choice of death, which she thought might prove prescient as well.
"We need to reframe how we all look at death," she told me. "In 10 years, this will be a no-brainer."
After graduating summa cum laude from San Francisco State University in 1984, she worked as an account executive for Cigna, a health insurance company. But she was forced to resign in 1993 for health reasons and returned home to Knoxville.
She met the diagnostic standard for a range of diseases affecting the immune system and endocrine system: ME/CFS, fibromyalgia (which causes severe musculoskeletal pain) and Sjögren's syndrome, a painful immune disorder whose symptoms include dry mouth and dry eyes. She was also diagnosed with Hashimoto's thryoiditis, which required removing her thyroid gland at age 28. From then on, she needed thyroid medicine in order to live.
In her 50s, she developed a rare genetic condition called Hailey-Hailey disease that caused painful skin blisters across her body. Each condition, a terrible disease unto itself, piled onto the next one.
"Nobody knows how sick I am," she said. "It often feels like I'm in hell."
Her experiences living in San Francisco as the gay community grappled with the early AIDS outbreak helped inspire her to speak out as an advocate calling for biomedical research for those diseases. Though she couldn't march in the streets, she accomplished much with her laptop, mostly from bed.
She met her husband, David Shepler, at a bridge tournament in 2002. She married him the following October, when she was 46.
He was her partner as she rallied hundreds of patients to form the Hailey-Hailey Disease Worldwide Support Group on Facebook, which offered 24/7 support to sufferers.