Since finishing and releasing Taking Turns, my work (and for a while my caregiving) is focused more specifically on end of life care, particularly for the elderly. I’m in the learning stages now, and hope to start interviews next year, for my next book. My plan is for it to use the tools and methods that helped me to create Taking Turns (interviews and comics) but focus this time on talking about and dealing with health decline and death.
Last week I traveled to Washington, DC to attend the Coalition to Transform Advanced Care (C-TAC) Annual Summit, to learn more about end-of-life care policy and national trends with regard to palliative and hospice care. In addition to being exposed to much I need to learn, it also turned out to be a great opportunity to experiment with note-taking in Paper 53 on my iPad, using an Apple Pencil. I’m still learning and open to feedback, but there are two different approaches here, annotated/drawn-on photos and caricatures, both of which I’m enjoying.
These are not all my notes, just a few highlights. Also, I was only able to go to the first two days of the event. But it was a good learning experience. The annotated drawings share links to relevant resources and information.
Though I don’t have notes featuring anyone from AARP, I do want to give a shout out to their work in support of caregivers. We heard from their Executive Vice President Nancy LeaMond and I attended a panel about research on caregiving with the director of their public policy institute, Susan Reinhard, RN. To learn more about their great programs, check out the family caregiving support resources on their website. There you will find a 24 hour caregiver support hotline in English and Spanish staffed by professionals.
While in DC, I was able to also guest teach in Linda Raphael’s AIDS & Narrative Memory Workshop at George Washington Medical School . The students had watched David France’s documentary How to Survive A Plague and read many first-hand accounts of living with HIV/AIDS, both historical and contemporary. The students in our group were interested and interesting. They were engaged, animated, read with a critical eye for structural inequalities and sophisticated empathy that recognized the challenges in the unique (and in some ways not unique) complex issues that surround the history of AIDS from 1981 to today. It was a stimulating and encouraging group and I was honored to participate.
Then I boarded a train to New York City. Travel in the UK often involves train rides, but not so much in the US. So it was great. I love trains. The two giant stations on this trip were a bit daunting, but I survived.
That evening I was honored to attend Columbia’s Graphic Medicine book discussion group of my book. Wow — how cool to sit with smart, thoughtful people doing a deep-dive into my book. We also had call-in group members from Toronto and Chile! What an enriching experience.
The next evening Marsha Hurst, Mario de la Cruz, and Sana Sajjad organized a group of talented, kind, and smart artists, writers, poets, film makers, and activists (plus me) for a Columbia University narrative and social justice seminar titled “HIV/AIDS in Narrative Memory.”
We each had an opportunity to talk about our work and association with HIV/AIDS as carers, artists, and human beings. The group represented the past, present, and future as well as diverse experiences and communities. What an honor to listen to these wonderful people’s stories.
After the panel we separated and joined tables of audience members where more stories were shared, connections were made, experiences were honored. In addition, relevant issues were discussed, such as infection rates among younger populations, challenges in care funding and delivery, and much more. Rarely to groups of people talk in which a vast range of age and experience are represented in their own voice, and all voices are honored. That happened at this event and it was powerful to witness.
Next up is a lecture on Graphic Medicine at the South Bend Art Museum and then a week-long writing retreat off Vancouver, Canada. Really looking forward to time away to reflect on what an amazing year it’s been.
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