Annie spent her career as a scientist in infectious diseases, someone who devoted her life to helping others live longer, healthier lives. She and her husband Jon embraced every adventure they could: skiing, scuba diving, traveling the world, and even learning to weld together.

Their lives changed in 2017 when Jon was diagnosed with ALS, the same disease that had taken his father. The first sign came on a ski trip, when Jon uncharacteristically dropped his ski pole—a small moment that would mark the beginning of their journey with his illness. Doctors gave him 36 months to live. Jon responded with extraordinary courage, declaring that they should fill whatever time remained with everything they loved most.

They went scuba diving three separate times in 2018, traveled to India, Japan, and Europe; they returned to the slopes in Colorado, where adaptive ski braces allowed Jon to keep doing what he loved, even as his legs weakened; visited Hawaii, where Annie snapped the photo of Jon and his bright smile that still lives on as her phone background, and lived as fully as possible, right up until the pandemic brought them home in March 2020.

By then, Jon was very ill and required a feeding tube. Annie hired a caregiver to help, and that woman became one of her now dearest friends. “We shared intimacies that were so extraordinary,” Annie says, “you can’t help but become close.” Jon eventually entered hospice care, and together with his family, they made the painful decision to end life-sustaining treatment. Annie pauses as she remembers the pain and love in that moment.

After his death, Annie made a promise to herself: she would not let grief take her too. “When you sit on the couch and stop living,” she says, “it’s like two people died.” So she traveled alone, took “lots of scary trips,” and leaned on her friends for support.

Then, in August of this year, Annie received devastating news—she, too, had ALS. Four days before her 70th birthday, she had fallen—an event she now recognizes as the beginning of her own illness. Having cared for Jon, Annie knew exactly what lay ahead. 

For a time, the weight of that reality overwhelmed her. “I am now living alone in the house where my husband died,” she said. “I was terrified to think I’d have to be cared for by strangers.” In her darkest moments, she experienced significant depression. Then she found Dignitas, an organization in Switzerland that provides medical aid in dying. Enrolling in their program brought her an immediate sense of relief. “It allowed me to live again,” she says, “because there’s no legal option for me here in New York.”

Though agnostic herself, Annie noted that her family is deeply religious. When she told her Protestant brother about her plans, she was surprised and heartened by his compassion. “He said he’d never choose medical aid in dying for himself, but that he supports me and he’ll be with me on that day, should I choose it for myself” Annie shared. “It showed me that you don’t have to agree with medical aid in dying to support it. You just can’t expect everyone else to live by your beliefs.”

Annie discovered Compassion & Choices while researching her options and quickly reached out, as she realized the power her story might have. “This feels like the right thing to be doing with my time,” she says.

Just days after connecting with the organization, Annie joined advocates at the New York State Capitol for a demonstration outside Governor Kathy Hochul’s office, as they urged her to sign the bill into law. Annie shared her story on camera for the first time, and her words moved everyone who heard them. The team invited her to join a meeting later that day with the Governor’s staff. And Annie, ever brave, agreed on the spot, adding an extra touch of poignancy and urgency to the discussion.

“I hope a small amount of good will come out of this,” she says of sharing her story. For her, medical aid in dying isn’t about giving up, it’s about having the freedom to live fully until the very end. “Having this option gives us space to live,” she explains.

True to herself, Annie continues to live boldly. Soon she’ll travel to Berlin with friends to paint the beauty around her, then to Paris to celebrate another friend’s 70th birthday, and finally to Florence and Rome. She’s also planning a trip to Vietnam next spring, though she admits she’s not sure if she’ll be able to make it, as so much is still unknown about how her illness might progress.

“I’m scared too,” she says with characteristic honesty, “but I do it anyway. Life begins at the end of your comfort zone.”

Then she adds, with conviction: “I’m feeling braver than I thought I would, partly because I know I have options at the end, even if not here in New York.”

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