Almost from the time of Alan’s diagnosis, many have commented on the palpable sense of love and openness to textures of living both difficult and sweet. Alan and Sarah were grateful to be held by friends of many years and of almost-immediate intimacy. Many of you are with us in closeness and we thank you for that.

 

Now we were lucky. It so happens that a dear friend introduced us to her mother, Linda, who also became a dear friend. Linda Emanuel is deeply trained in medicine and is exploring the connections between physical, emotional, and spiritual health as a national expert in palliative care. As Linda describes, palliative care is founded on one big precept: To attend simultaneously to the physical, social, emotional, and spiritual well-being of the patient and family. And yet few since its founder, [Dame Cicely Saunders, 1918-2005, a nurse turned social worker then physician and a deeply spiritual person] have plumbed all these areas with the goal of bringing them together through conversation. 

 

We were incredibly fortunate to dwell inside the power of loving conversations. At critical moments with Linda’s support we had:

 

• A “third ear” to key medical consults, especially in the early whirlwind when emotions are so high that we know you can’t trust your own ability to process, a reality research validates.

• Awareness from friends’ personal experience about the value of having palliative and chaplaincy care integrated into cancer care from the very beginning (improving outcomes and prolonging life) and help finding a medical system that lived these values.

• Someone we trusted guide us through the intensity of a powerful decision rubric, creating space for tender, honest, and clarifying discussions about how to name and whole-heartedly continue pursuing life goals should prognosis, burdens of illness, and level of independence shift.

• Help in staying true to what mattered when things did shift, including formalizing wishes into legal documents (written wishes, health care proxy, will, advanced directive).

• Encouragement, from the very beginning, to find our own voice. Though all who knew Alan know of his righteous defiance in the face of apparent decrees proven false by rigorous efforts…still…we never identified with the idea of approaching illness by “fighting” and all the stress and antagonism that word carries, nor with the implied judgment in choosing to “not-fight.” Instead, we sought and created a path of bringing in and holding love, of entering into treatment that would minimize the burdens of disease and maximize our ability to be in the world.

 

Somehow, we were sometimes able to harvest happiness amidst distress, were able to let order and vitality coexist with chaos and pain. She, and now we, have been thinking about what makes this possible for some, and how to make it accessible for more.

 

We asked Linda to honor Alan’s memory by somehow expanding this in the world—to continue enabling and sharing the gift of living inside meaningful and loving conversations especially in hard times—to help all of us transform that which you would never have asked for yet into blessing. 

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More tools are needed, and they need to be developed with care, founded on research. This matters. Precious are time and energy, so tools need to be more than inspired—they need to be tested and true. (Alan certainly never tolerated hogwash, however well-intentioned :) That’s where science and spirit meet, and that’s where we will honor Alan with tested and true ways to help people find joy in journeys shaken by illness.​