But for the late Vermonter’s family, it’s achingly personal.
When Lake — a botanist turned homesteader turned nurse practitioner turned artist — was diagnosed with lymphoma a decade ago, she told a small circle of friends and neighbors about treatments that included chemotherapy, radiation and, most punishing of all, a bone marrow transplant.
When the 60-year-old mother of two became the first terminally ill Vermonter publicly identified for taking a lethal prescription under the state’s Patient Choice and Control at End of Life Act in 2015, the news rippled from Brattleboro to Burlington.
And now that one of Lake’s sisters, Omega Institute co-founder Elizabeth Lesser, has written a memoir — “Marrow: A Love Story” — about being her sibling’s stem-cell donor, media giants ranging from Oprah Winfrey to TED Talks are touting the lessons (“this is a book that teaches us how to live,” Jane Fonda declares on its back cover) of an unassuming yet unique local.
Act 1, Stage IV
Lake’s story begins with that of her father, the late New York adman Gill Lesser, who started promoting the ski industry after serving in the Army’s 10th Mountain Division during World War II, not knowing the work would lead him to move his wife and four daughters from the north shore of Long Island to the southern gates of Vermont.Sisters Katy, Elizabeth, Maggie and Joanne grew up in Grafton before scattering like dandelion seeds about the Northeast. Lake, staying close to home, was picking and pressing flowers and ferns into botanical prints when she phoned her siblings in 2006 with an announcement.
“I’m sick,” she said.
“Sick?” Elizabeth Lesser recalls replying. “What kind of sick?”
“Cancer,” Lake whispered.
Stage IV mantle cell lymphoma, doctors specified. Lake endured months of chemotherapy and radiation, then enjoyed seven years of remission before a hibernating malignant cell awoke and began to multiply through her blood, lungs and lymph nodes.
This time, Lake’s only hope was a bone marrow transplant. The likelihood of a sibling being a genetically suitable donor was only 25 percent, while the chance of finding someone in a registry was even less. Yet almost miraculously, Lesser discovered she was a perfect match.
The two sisters listened as doctors explained how they’d shoot Lake with a potentially lethal battery of chemotherapy and full-body radiation to destroy her cancer-laden blood cells before arming her with Lesser’s healthy reinforcements.
It sounded like war, but that was only the first battle. Lake’s body might reject Lesser’s cells or, conversely, Lesser’s cells might attack Lake’s body.The scenario felt sadly familiar. The two sisters, both born in August, were used to sharing childhood birthday parties. But the people-pleasing, self-reliant Lake and her strong-willed, spiritually seeking older sibling weren’t always happy about it.
“My sister and I had a relationship comparable to most human relationships,” Lesser writes in her book. “We were similar in some ways, yet also different enough to misunderstand each other, to judge each other, to reject each other. Sometimes we were close, and sometimes we were strangers. And like most people — and certainly like most siblings — we carted around with us bags of old stories and resentments and regrets.”
Lesser wanted to unpack them: “Perhaps if Maggie and I can sit together and, with the help of a therapist, retrace our years of sisterhood and clear up old wounds or misconceptions,” she thought, “we can go into the medical procedures better able to give and receive.”
Lesser, author of “The Seeker’s Guide: Making Your Life a Spiritual Adventure” and “Broken Open: How Difficult Times Can Help Us Grow,” knew her younger sister wasn’t one for “woo-woo voodoo.” But Lake, receiving an invitation along with a New Yorker magazine cartoon with the caption “I’ve never forgiven him for that thing I made up in my head,” immediately accepted.
The two then agreed to a list of questions they’d both answer:
1. Here are things I have done that may have hurt you. Will you forgive me?
2. Here are ways I have felt hurt by you. Can I safely tell you my truth?
3. Can I be myself with you?
4. Will you accept me?
5. Will you love me?
6. Will you make a place for me, all the way down to your marrow?
Arriving at the therapist’s office, they talked for three hours.“I find myself wanting to interrupt her, to set her straight,” Lesser writes. “I see her wanting to interrupt my stories too. But the therapist holds up his hand. ‘Just listen,’ he says.”
The conversation continued outside the office and into Lake’s transplant time, weeks of hospitalization and months at home wrestling with exhaustion and side effects from nearly a dozen medications. The highs and lows corkscrewed like a roller coaster.
“Whoaaaaaa,” Lake emailed her sister after one hospital emergency room visit. “Our cells are in battle. Diarrhea. Nausea. They put me on steroids.”
Shortly after, Lake revealed something even more personal in a return visit to the therapist.
“I spent so many years trying to be someone else, trying to be what I thought I was supposed to be, or what someone wanted me to be,” Lesser recalls her saying. “Let me tell you, it’s an exhausting way to live. But the cancer stripped me down. Nothing left to lose, as they say. So this year I said to myself, no apologies, I’ll just be who I am.”
“This terrible year,” Lake concluded, “has been the best year of my life.”
‘All that’s left’
That didn’t stop the cancer. On Dec. 1, 2014, Lake confided to her journal:
“I am beginning to think about taking pills to end my life. Vermont has just made it legal. I called a friend who worked on that bill. She told me who to talk to, how to learn more. I have lost so much control over my own destiny. I need some of it back. Oddly enough, having a way to end my life will give me back my life. No one wants to live more than I do. I don’t want to die, but I don’t want to be kept alive as a test case either. I know my doctors are trying as hard as they can to help me. But I’m on the inside of this medical world. I know that doctors hate to fail. They think death is a failure. Well, it’s my life and my death and I want them back.”
Lake was hospitalized that Christmas, then returned home New Year’s Eve to secure a lethal prescription, say goodbye to her friends and, surrounded by family, die on Jan. 16, 2015.Lesser went on to write her book, a 320-page hardcover recently released by HarperCollins. Lake’s daughter, Norah, was initially reluctant to read it. When she did, the 33-year-old Norwich farmer was struck by a journal passage written after her mother capped a hospital checkup with a visit.
“We headed to Norah’s farm, and she and I spent two glorious hours in her greenhouse, winter sun warm under the glass, music playing, planting the first of the season’s endless trays of shallots, onions and scallions,” Lake wrote that day. “To be working, to be planting, to be with my amazing daughter, I could feel my true self emerge from the gutter.”
Lesser notes the late 19th century philosopher Friedrich Nietzsche calls this “amor fati” — the ability to not merely bear one’s fate but to love it by seeking beauty and meaning.
Norah Lake and her brother, Hayden, hope to foster that by carrying on the legacy of their mother’s art — showcasing it at craft shows, from a Norwich studio and on their website.
“My mom had a visceral emotional connection to things,” her daughter says. “That means feeling both the joy and the sorrow. I don’t want to block any of it out. It hurts, and I’m so glad it hurts.”
“You don’t have to die to live like this,” she recalls the therapist reminding the sisters in one session. “Do you understand?”
In another, he suggested they pause, take a breath and, closing their eyes to a world seemingly spinning out of control, look inward.
“What do you see, Maggie?” he asked.
“I see love,” Lake concluded. “That’s all that’s left. That’s all that matters. I see that we are deeply connected in love and light. What more could I want?”