June 2011 marked the 30th anniversary of HIV/AIDS. This is another reflection from my experience working with HIV/AIDS, 1984-1993. You can catch up on previous installments by clicking on HIV/AIDS in the Topics box.
How do you prepare for your own death when you’re in your 20s or 30s? It’s not a topic that makes the conversation list for any age group. Certainly not for those settling into adulthood and careers with an uncharted future ahead for them.
Elizabeth Kübler-Ross’ groundbreaking book, On Death and Dying, had only been out fourteen years when I was initiating conversations on this very subject with those affected by AIDS. It’s one thing to have these conversations with people who have been fighting a life-threatening illness, who have been eased into their mortality, usually with the help of hospice. It’s another to have these conversations with people who have a life-threatening illness with so many other complexities exacerbated by and because of their illness…and no hospice willing to offer them services.
At some point, someone would ask about final arrangements or we would bring it up if we felt time was running out and the topic had yet to be broached. Dr. Gordon and I each had our own set of priorities. Dr. Gordon wanted permission to perform an autopsy for research purposes. I wanted to know that legal and personal arrangements (wills, property disbursements, special wishes) were complete.
So once again, Dr. Gordon and I were piecing together services and information as fast as the needs were arising. That’s were the idea for field trips to the mortuary emerged.
Only one mortuary in the county would even handle arrangements for someone who died from AIDS. Cremation was mandatory. And the mortuary allowed us to perform autopsies on their premises prior to cremation.
When someone was asking questions about their final arrangements or wondering what was going to happen to their body when they died, I would ask if they’d like to go a field trip to the mortuary. I encouraged them to bring their partner, family, friends, anyone they wanted to include. Dr. Gordon often joined us.
The owner of the mortuary was awesome! He answered questions, showed us around, gave us time alone to talk further. He never brought up money or cost. When someone asked about scattering ashes, he’d tell them what the law was and that whatever wishes they really had, talk to me because he didn’t want to know!
By the end of the visit, they knew what would happen to their body from the time it was picked up from either their home or hospital, where the autopsy was to be performed, who would be there (they always asked if I was going to be with them during the autopsy. That, and because no one else would assist Dr. Gordon, was how I came to being involved), who would be picking up their ashes, and anything else they wondered about.
What was most amazing about these field trips was the sense of having a major unknown addressed. For as intense a subject as death is, inevitably we had some very hilarious moments. Death was seen for what it was, a part of living, and life can be very funny. It was like also a big sigh, now-that’s-been-handled-we-can-move-on. The mystery had been removed and now we could attend to the regular stuff of living.
The mortuary wasn’t the only field trip we had. Next week, I’ll talk about one of our movie field trips!