IN MEMORIUM, LYNNE CALKINS
A Good, Long, Life
By Fran Moreland Johns
Lynne Calkins, when asked as she often was, couldn’t remember a time she didn’t want to be a nurse. There were the early years as a schoolteacher while raising her three children, but in hindsight they seemed mostly to lay the groundwork for a lifelong career that regularly called for teaching others skills they needed.
Calkins, one of the founders of End of Life Choices California, died September 20 on her own terms, at her Encinitas home with Ken, her husband of 66 years, their daughter Molly and son-in-law Mark beside her. It was the end of a two- and one-half year battle with Bulbar Onset ALS, a rare form of the fatal disease.
It was also the end of a long career that always focused on helping or looking after others. Calkins was sending comments and suggestions to EOLCCA colleagues up until virtually her last days; before she died, she made Ken an ophthalmology appointment which he dutifully kept on the morning after her death.
Calkins grew up in several California towns. When she was five her mother married the man Lynne always considered to be her father. “I never knew my biological father,” she says; “I never thought of myself as a ‘stepchild.’ I was thrilled when my brother and sister came along. The happiest years of my life, I think, were when we were living at ‘Stanford Village,’ a community comprised of nine World War II era Quonset huts, and my dad was going to Stanford Law School on the GI Bill. There was so much freedom for us kids.”
At 18, Lynne married Ken Calkins, soon moving with him to La Verne, where he had graduated from La Verne College a half-dozen years earlier. “The La Verne College community was one of simplicity, a slower lifestyle than Arcadia about 15 minutes away from where my parents lived. There was no alcohol, no smoking, and a very kind and gentle as well as a democratic approach to child-rearing. I wanted to emulate that for my family.”
Lynne and Ken Calkins raised two sons and daughter Molly while Lynne worked as a teacher. (Both sons predeceased her.) Encouraged by her husband, Lynne followed her lifelong passion, becoming a Labor and Delivery RN. It was a job she loved though occasionally found frustrating. When a friend said, “Why don’t you become a Nurse Practitioner, so you can write your own orders,” that led to further studies and the next step up in her career.
“From the earliest days of her career, Lynne was drawn to working with people at the end of their lives”
From the earliest days of her career Lynne was drawn to working with people at the end of their lives; she worked frequently with death doulas, ‘death cafés’ and end-of-life organizations such as Compassion and Choices. C&C had been instrumental in training volunteers to work with Californians seeking to know their end-of-life options. When that organization pulled out of its program training bedside volunteers and one-on-one support, Lynne was among those shocked and saddened by the resulting gap in end-of-life care.
Enter Judy Epstein, long a senior management leader with Compassion & Choices. Says EOLCCA Treasurer and Co-Founding Director Claudia Comins, “Judy called Lynne, Karen Morin (another former C&C volunteer) and me and said, ‘Are you missing this work as much as I am? What if we started our own nonprofit . . .’ And we said, Sure!!” A movement was quickly born. With Epstein as Co-Founder and first Board President, the four women launched the ambitious project that would soon become End of Life Choices California.
“The four of us split up the various pieces of creating a nonprofit,” Comins recalls. “Lynne and Karen spent a lot of time creating the original website.” Lynne teamed up with Judy Epstein to develop the EOLCCA volunteer training program, modeled closely after the discontinued C&C program. For the rest of her life, supporting Californians and their families at life’s end, and working with EOLCCA volunteers – training, advising and supporting the team of EOLCCA volunteers that now tops 100 dedicated men and women – would be a consuming passion for Lynne Calkins.
EOLCCA work had to vie with Lynne’s other consuming passion: tennis. Until just months before her death she was on the courts at every opportunity, playing singles and doubles, practicing her serve and working with her tennis coach.
In early 2024, Lynne began to worry about what seemed a problem with her speech. Several times she called fellow EOLCCA public speakers, asking them to listen closely and tell her if her speech “sounded funny.” None picked up any change. Doctors sent her for speech therapy; nothing made a difference.
One day Lynne was handling EOLCCA phone duty when a call came in from a man with Bulbar Onset ALS. When she hung up after their conversation ended she said to herself, “He sounds just like I’m starting to sound.” Her self-diagnosis was, sadly, soon confirmed. Bulbar ALS makes up fewer than ten percent of the fatal neurological disease and rarely strikes someone over 80. Its prognosis is generally about two years until death. There is no known cure, and little is known about its progression.
“She recorded discouraging moments, self-disparaging episodes, constant losses and relentless decline with openness, clarity and humor”
When Lynne told friends and family of her diagnosis, she said she would fight to remain functional and useful as long as possible, and when the time came, she was grateful that with the California Law, she had the option to choose medical aid in dying. Then she decided also to add whatever she could to future understanding of her disease.
Just months after her diagnosis, Lynne began documenting her Bulbar ALS journey through zoom talks when she could still make herself understood, then through notes and texts and emails to fellow board member Fran Johns who will compile them into an information booklet EOLCCA will make available. She recorded discouraging moments, self-disparaging episodes, constant losses and relentless decline with openness, clarity and humor.
Frequent asides would often be included in her reports: “Can you believe our amazing staff?!,” she’d write. Or, “We’ve got the greatest volunteers in the world!” Or she’d laugh at herself with messages such as one accompanying a photo modeling a new apron equipped with a small towel to help with drooling. “Don’t you wish you had one,” she emailed. “Eat your heart out.”
Lynne Calkins died peacefully on September 20 at her Encinitas home, with her husband Ken, daughter Molly and son-in-law Mark at her side. Several days before she died she had sent the last of the yet-uncounted comments on how this rare disease affected one woman as it went its relentless course, for the booklet that will help countless others until a cure is found. It will be Lynne Calkins’ final gift to the world.
Share your memories
If you would like to share a memory of Lynne,
please email us at info@endoflifechoicesca.org with your story.
In lieu of flowers, Lynne requested and would be
delighted by donations to EOLCCA
About the Author: A lifelong newspaper and magazine writer, EOLCCA Board Member Fran Moreland Johns has published fiction, nonfiction, and several books. Her focus on end-of-life issues includes many volunteer years, numerous articles and one book, Dying Unafraid. She holds a BA from Randolph-Macon Woman’s College and an MFA from the University of San Francisco, and currently writes on Medium.com, franjohns.net, and on Substack at franmorelandjohns.