In July of 2024, a group of us motored with Hanna down the long road to Vermont. Two days in a van was difficult for someone whose body and breath were so fragile. We rolled along together, accompanied by soulful podcasts and constant questions. Breathing okay? Comfortable? Any pain? Rest stop french fries. Roadside cough assist to clear Hanna’s throat. Two luggage carts to get all the gear into the first night’s hotel.

Why risk travel? To defend Hanna’s ability to choose how and when she died. Vermont is the nearest state with a MAID clinic. MAID stands for “Medical Assistance In Dying.” In a few states in the US, the law allows doctors to help people choose their own death. When someone is ready to say, “I can no longer bear living. I choose to die,” a MAID clinic can help. Hanna was not then ready for that decision, but by visiting the clinic she could gain pre-approved access to their services.

ALS is a thief. Hanna insisted that while it might steal her body and her life, she would not allow it to have her aliveness. She would find fullness of life until she could find it no longer. Then she would fill the moments of her death with as much aliveness as she could, together with people she loved. If we didn’t defend it, the thief would steal something else: her ability to shape her death as an act of care.

For many months, that was the story we held: when the time came, we would return to Vermont. Hanna, …and well, me, I think all of us, were resisting what was happening as her symptoms progressed.

But by the summer of 2025, it was clear that Hanna would not be able to make another trip to Vermont. Even if she could, she would leave behind so many of those she wanted close in her last days. The hospice nurses in Pittsburgh gave her a different path, which required no clinic and no travel. “When you are ready, you can simply stop using your ventilator. Your body will do the rest. We can make sure you are comfortable through the process.”

This gave Hanna peace. She could keep her choice, and her people. She could die at home.

What would a beautiful death really be like—the days before, the day of, the days after? How did people do it before death became an industry? Our usual customs of death leave little room for relationship. The body simply goes away, then briefly reappears for a cookie-cutter gathering. What would it look like to seek a more alive relationship with death?

There’s a theme that runs throughout Hanna’s life, and throughout her illness: when we turn to meet the monster—the thing we fear, the thing we would rather avoid—we open the possibility of a relationship with it.

Starting in 2024, before the Vermont trip, a subset of Careforce gathered to explore and design with Hanna, helped by experts like Didi the Death Doula. They referred to themselves as “The Death Bureau”—a name that doesn’t flinch—and continued to meet for more than a year.

Soon after Hanna’s diagnosis, a group of us attended a “death café”—an open conversation about death and dying. I felt awkwardness in myself and saw hesitation in others during that conversation. “Can I really talk about this right out loud with all these people?” So yes, Death Bureau: “Yeah we’re talking about washing the body, what about it?”

A scan of the group’s notes shows topics like:
– Spaciousness
– Music
– What experience for those far away?
– Rituals at different points in the process
– What Hanna wants, and what she does NOT want
– Caring for the caregivers—what is the design for them?
– How to hold space for grieving
– The experience of Seth’s kids
– Invitations: ways others might expand their own relationship with loss and death

Hanna had clear metrics for her choice. Here is something she said, using her Tobii gaze-tracking speech device:

Those things all became more difficult as the disease progressed. Hanna’s care became more time-consuming. She grew more dependent on her ventilator to keep her blood oxygenated and clear her lungs of carbon dioxide. Her neck became weaker, making it harder to turn her head.

She fought for time to write, to make essays for her film, to revise the manuscript of her next book. She worked thoughtfully, iterating and searching for words. It mattered greatly to Hanna to offer voice to the world, to share the possibilities she saw. We can, she believed, learn to make a better world together.

Still, The Question was often on Hanna’s mind. Is it too hard to live? Are the few minutes she has to write, to be with those she loves, to give and receive, are they worth the hours of fighting simply to continue existing? Is her work complete enough to trust it into the world? Is it time?

By winter of 2025, the risk felt awful. The weight of care had stretched the team beyond its limits. And we worried that any time a crisis of pneumonia or infection would rob her of the end we had imagined together.

We seriously considered a move to a “Skilled Care Facility”—an institution with nurses trained to care for patients who need serious and complicated care. Here is Hanna, telling a friend that caregiver burden and the realities of moving to an institution had led her to a momentous decision:

Just a few days later, Hanna changed her mind, saying,

More creating. More loving relationship. More life.

One night in early January, Hanna’s partner Seth and volunteer caregiver Steph were on the “bedtime team.” Usually that ended around 10:30 with Hanna tucked in, blankets and pillows arranged, ventilator on, feet just so, medicated and ready for sleep. But that night, Hanna was struggling with a sore throat and sticky mucus. It was the first night of strep throat.

Seth and Steph stayed up with Hanna for something like eight hours that night, trying to use the suction machine to collect the thick phlegm that gathered deep in her throat. They were unsure of the technique, and Hanna’s breath was in crisis. At last in the early hours a hospice nurse arrived, and swept the flexible orange tube deeper than anyone had dared. A few noisy and forceful seconds later, the nurse withdrew the tube. They all looked at Hanna. Hanna looked at them, and broke into a smile like the sunrise. That wasn’t the end of the strep, but now we had been shown how to handle the worst of it.

Weighty questions and conversations shadowed December into January. There was an atmosphere of unraveling. How do we fill the schedule as paid caregivers roll off to other jobs, the volunteer group is spread thin, and the work of care becomes more technical and more demanding? How do we collaborate with Hanna on the conditions for her thriving life? People did a lot of research. We talked a lot.

In the third week of January, Hanna’s therapist Amy came to Hanna’s house, “The Oasis,” for their weekly session. They met privately, but I can tell the story based on words from both Hanna and Amy. There came a point when Amy asked some version of the question, “Do you still want to live?”

In response Hanna said,

Amy asked for Hanna’s permission to be blunt. Hanna nodded. Then, in response to Hanna’s “what keeps me here” list, Amy said, “That’s mean.” She remembers watching Hanna’s face open in surprise, and possibly relief. Amy clarified: “That’s mean to yourself.”

Amy told me, “I wanted to be certain she understood I was speaking about the impact of her expectations on herself, rather than on the exhausted Careforce, because I knew she wanted to relieve her loved ones. This was something else.” Then, “She appeared to be grateful. I think she may have said as much.”

Soon after, Seth sent us a note: “…This evening Hanna talked through her feelings with Amy and discovered an important shift in how she is thinking about moving forward. This realization will impact us all and she feels an urgency to share with you all as we plan next steps together.”

We gathered at the Oasis with Hanna the very next evening. Hanna opened with this announcement.

Hanna said this, then asked the group how they felt. “How did that land with you?” I think Seth was the first to reply. “Relieved,” was the gist of his answer. And mine, and everyone’s. We agreed: let’s avoid the threat of death by crisis, a choking incident or illness at home that was beyond our best ability to help, or something similar at a facility with Hanna alone and mute. So yes, relief even though this meant the final loss, because Hanna had chosen, and we were with her in that choice.

We asked Hanna the same question. “How are you feeling?” She replied,

Hours later, she still felt the same.

Here’s how she explained this choice to others, in a note stored in her Tobii so she could repeat it through the many visits she had through the following days:

The following week was a blur of care-as-usual combined with detailed preparation and visits between Hanna and her people near and far, including Elsa and Eben, her mother and father in South Africa.

One essential task was to coordinate with the hospice nurses, so a few of us could be trained in the logistics of Hanna’s last hours. What dose of which medications? Administered how, and how often? What should we expect to see as we watch the process? What could go wrong, and how should we handle that? The nurse gave us documented details, so the unthinkable became just another procedure like the dozens we had learned before. I remember breathing a long sigh after that briefing.

Hanna described the process this way:

The burial service was three days later, at the Penn Forest Natural Burial Park in Pittsburgh. The service was gorgeous. I couldn’t find words, so I’ll give you Maranie’s perfect description. She said this:

Hanna touched people. So many in South Africa. People in Chicago, New York, and Dublin. Colleagues everywhere, and hundreds of students around the world. So Hanna and Careforce collaborators looked for ways to help loved ones everywhere honor and celebrate their connection to Hanna, their loss, their grief.

One result is a document called Grieving Hanna from Wherever You Are, with resources on grieving and death, and suggestions for hosting a memorial wherever you are. It opens with a message from Hanna: