In Memory of Frank

In Buddhism there is a term, “sad joy,” meant to capture the exquisite tenderness of a heart fully open. It is feeling the joy of living, and the truth of impermanence, or inevitability of loss, all at once. It is this with this feeling that I tell you of the death of Frank Liva.

Readers know Frank from his telling of living with glioblastoma. Frank contacted New Hampshire Options at the beginning of 2022. He wanted the option of medical aid in dying, he told me, because he knew how his illness would end: not well. He was afraid of the suffering his family would endure watching him succumb to this fatal brain cancer. He had already lived longer than most people with the disease. And yet he was afraid that aid in dying would not be legal soon enough for him in New Hampshire. Instead, he wanted to help make this option available to others. What could he do, he wondered. I asked if he'd be willing to share his story going forward and he was.

Frank was a successful software engineer who liked planning and linear progression. He told me he hated uncertainty. He described how he’d retired only several years before. He and his wife Bonnie were looking forward to sailing, hiking, travel, and all the things people do as healthy younger retirees. But then one night after a hike in the Whites he had an awful headache and delirium.  Bonnie convinced him they needed to go to the hospital. They feared a stroke. But the news they received was even less welcome.

what was life-giving, as I witnessed him, was his courageous openness about what he was experiencing, his bravery in sharing that with those closest to him.

Plunged into a new reality of uncertainty, in the months that followed Frank researched all kinds of clinical trials and became part of several. His life became punctuated by trips to Boston for MRIs and visits with various specialists. All the while, Frank continued working part-time for a friend’s new maple syrup operation, a way of lending his skills that gave him great satisfaction. He and Bonnie sailed and traveled and visited with friends and family, but always with that veil of wondering, would this be the last time?

Frank and I talked a lot about the ongoing clinical trials, how it felt to be in the ever decreasing number of survivors. We talked about the fear each time he had an MRI, that it would show the tumor growing. But the tumor remained stable for quite a long time.

As we approached the holidays last year, Frank feared it could be the last time he saw Thanksgiving and Christmas. The tumor was growing again, and treatment options and trials were running out. This spring, Frank realized he really was looking at last times. There were no more options that he was willing to try as the chemo side effects had become unbearable.

Frank said to me more than once he did not want to just be alive; he wanted to live. We talked a lot about what that meant. One of the experiences that haunted him was the death of his own parents. He watched them decline and suffer in ways he thought desperately sad and painful. He wanted a different end for himself, and especially for the benefit of Bonnie and their son, Connor.

Frank had the gift of time, though of course he did not know how much. He used it to prepare Bonnie and Connor in ways both practical and deeply relational and loving. He maintained his sense of humor, and at least in my experience, remarkable composure, though he admitted to difficult down days. We talked about connections, about writing letters and making videos. About reaching out to or reconciling with select people, about what was most important to him and how he’d devote his time, the choices he was making and the freedom he began to experience as he allowed himself to say no.

Frank was deeply anguished about the future for Bonnie and Connor. He felt considerable guilt knowing he would leave them. We talked a lot about that and how he could prepare them for life without him.  Yes, he cancelled credit cards and prepared spreadsheets and made helpful instructional videos on how to run the snowblower, etc.  But what was life-giving, as I witnessed him, was his courageous openness about what he was experiencing, his bravery in sharing that with those closest to him.

I’ve been with people whose denial of their own dying, or the imminent death of a loved one, has left both parties feeling alone. Living without denial in the face of death is a true, and desperately unwanted, gift to those around us. Frank showed that. We also would acknowledge, sometimes with a rueful joke, sometimes with an expletive, the awful reality of his situation. But Frank walked through it with Bonnie and Connor, his teammates, with wholehearted love. To be a small part of that was for me an immense privilege and honor.

As it turned out, Frank did have the option of medical aid in dying. As it became clear that Vermont would drop its residency requirement, we were able to find Frank a physician (whom he and Bonnie really liked, thanks to our colleagues at Patient Choices Vermont. We were able to arrange for a lovely, hospitable private home where Frank could carry out his choice for a conscious death with his family and closest friend with him.

As the reality of dying came closer, Frank’s recognition that he’d have to leave home to die made him ambivalent. Every step of the process would have to be done in Vermont. He decided it would be better to have the option, so he and Bonnie and Connor made the long trip for the first of two required physician appointments. When I spoke with him and Bonnie about two weeks ago, in the middle of the 15-day waiting period between these appointments, Frank was clear. He wanted to follow through, as he put it, all the way to the end in Vermont. Just days before, he’d had one last voyage on his prized sailboat. He was losing significant bodily capacity every day; the pace of change was accelerating.

Frank never made it back to Vermont. The night of our last conversation, in which he was clear about his wishes, when he said he’d reached the threshold of living to being alive, he took a marked downward turn. The 15-day waiting period was too long for him. I believe that in having the last sail, and in making that final clear decision about what he wanted, he gave himself permission to let go. 

Frank died on May 30, 2023, the day he would have gone to Vermont for the second physician appointment and received his aid-in-dying prescription. 

You can read his obituary here.

Rebecca Brown is the director of New Hampshire Alliance for End of Life Options.