Emet

My best friend Emet passed away on March 25, 2019. Emet died from complications of Ehlers Danlos Syndrome, a genetic connective tissue disorder. He had gastroparesis and dysmotility which progressed to total intestinal failure. He also had CIDP, chronic inflammatory demyelinating polyneuropathy. He had a feeding tube (Gtube) for a while and then when his gastroparesis progressed to total intestinal failure, he switched to a central line of TPN. He was frequently hospitalized for fungal infections in his central line leading to sepsis.

Emet entered hospice in December 2018. His hospice journey began with a living funeral ceremony and his being ordained as a rabbi. He requested this ceremony explaining that Audra Lorde had a living funeral. This shows his deep understanding he was becoming a queer ancestor. It was a powerful and beautiful ceremony, modeling for all of us how important it is to tell people you love them right now while they are living. He also loved a good party, and if he was going to plan it, he wanted to be there.

I visited Emet every Wednesday afternoon because I taught Hebrew school two blocks from his hospice center. In February 2019, Emet was transferred to Keystone Hospice in Chestnut Hill, which is close to where I teach Hebrew school on Sunday mornings. I would then visit Emet every Sunday afternoon after I finished teaching. There was rarely only just me there with Emet. There was usually five or more people from Emet’s larger friend group hanging out. Emet was only 24 when he passed. He did not stop being young and fun and cool just because he was dying.

The time I spent with Emet was transformative for me. I realize now that Emet did not just have a living funeral. He also had a kind of living shiva, a kind of drop in space in which people came to offer Emet and each other support and to tell stories.

In a sense it was also a living Shomer, someone who guards the body of the deceased. Emet did not want to be alone, especially at night. Our friend group created an excel sheet and a system in which all of us took shifts to sit with him around the clock. From the time he entered hospice, he was never alone. This system modeled for me a kind of mutual aid based in the sense that we are each other’s guard, each other’s keeper.

I am currently a fellow with Shomer Collective, a fellowship focused on death and Jewish mourning practices for Jewish educators. Our recent fellowship sessions focused on the power of shiva space and the history of the chevra Kadisha. We learned about an organization called Shiva Scribe, in which someone writes down the stories and words said during shiva time, to try to capture the essence of the space. I realize now this is what I’ve been attempting to do: to evoke the atmosphere of Emet’s living shiva time in hospice.

This past year I did a fellowship program with a disability organization called Respectability, where I worked in the Faith department. For this fellowship, I had to complete a capstone project. I decided to conduct an oral history project, interviewing all of our friends who sat with Emet during his hospice time. I began this project modeled on the ACT UP oral history project, which interviewed organizers with the HIV/AIDS movement ACT UP. I chose this model because ACT UP was founded by Larry Kramer, who was Jewish. ACT UP is an LGBTQ organization, and the oral history project focused on disability, grief, death, chronic illness, and movement organizing. It was also predominantly young terminally ill dying people.

Emet died in a hospice center originally founded during the AIDS crisis. Emet was a talented and incredibly skilled community organizer with GLSEN, NCIL, and If Not Now. Many of his friends who sat with him were friends and fellow organizers from those organizations. This showed in the organizational dynamics of the network of care that formed around Emet. I wanted to examine this facet through the oral history project.

I did this project partially as a love letter to the social movements which created and sustained this network of care, and as an offering to our movements about disability, chronic illness, mourning, and grief. I want to examine what went right, why, and how.

The Shomer fellowship is encouraging us to think about the transformative possibilities of shiva space, and what can emerge from that time.

Emet died in March 25, 2019. On March 25, 2020, Emet’s fist Yahrzeit, the documentary Crip Camp was released on Netflix. The documentary tells the story of a summer camp for disabled teenagers that existed in the 1970s. It was led by disabled people for disabled people, the first summer camp of its kind. I watched this documentary on the first anniversary of Emet’s death and was struck by how much the summer camp reminded me of hanging out with Emet and our circle of friends in hospice.