30 Years

Red Ribbon

My two small sons and I moved from Massachusetts back to California in September 1984. My grandmother was living in Atascadero, just north of San Luis Obispo. It’s such a pretty part of the state, not far from the coast, and I thought it would be wonderful living near my grandmother so she could enjoy her great-grandsons.

I knew it was somewhat rural, but had no idea it was so conservative. Needless to say my two half-breed children (they’re half Japanese) and their divorced, ordained mother were the talk of the school they were starting in. The community was pretty homogenous!

I quickly found a job as social worker/chaplain at the hospice in San Luis Obispo. The concept of hospice was still very new in the U.S. Elizabeth K├╝bler-Ross’ groundbreaking book, On Death and Dying, had only been out since 1969. This community non-profit began to educate the community about end-of-life care and bereavement, as well as provide in-home support and services for those dying.

We had a staff of three! The nurse and I recruited and trained volunteers, coordinated an interdisciplinary medical team meeting for clients, ran support groups, had an active case load ourselves, and fundraised!

Polite company did not talk about death. People were stunned that I had 10 families for my first Parents of Murdered Children bereavement group. The Psychology of Death class I taught at Cal Poly filled up quickly and the university decided to give me a bigger lecture hall. Atascadero State Hospital (a very scary place!) routinely had me in to train staff who knew how to deal with criminals, but not dying criminals.

It was November 1984. I had just finished a cancer support group, the office volunteer and just left for lunch when the phone rang. I answered. It was the doctor from the County Public Health department asking for me to meet him at 1:00 at the county hospital. He’d fill me in when I got there.

I was not prepared for what I was about to encounter. I arrived before the doctor (I would come to realize that Dr. Gordon was always behind schedule). I showed up at the appointed room. There was yellow hazard tape crisscrossing the doorway. There was a paper tray, with a paper plate of food and plastic utensils on the floor outside the room. There was a huge Do Not Enter/Isolation sign on the door.

As I was climbing under the caution tape, a nurse was yelling something about not going in there, only Dr. Gordon ever went in. I can handle a lot of gore; it’s usually the smell that gets to me. I just about passed out from the smell when I entered. There were dirty linens on the floor, the bedside commode had not been emptied, the emesis basin was full, and the door to the adjoining bathroom was locked! A very thin man with purplish spots on his arms and face was lying in the bed.

This poor guy was mortified that someone was seeing him like this. I was helping him get cleaned up when Dr. Gordon arrived. The man was vacationing on the Central Coast from New York city when he spiked a very high fever and had uncontrollable diarrhea. He presented in the emergency room with something no one had seen before.

That was my first experience with AIDS, although that wasn’t what it was commonly called yet.

June 5th marks the 30 year anniversary of HIV/AIDS. What was once a for-sure death sentence has now become a chronic illness. While young gay men were the first community primarily impacted, now everyone is impacted. A huge portion of one generation was annihilated by AIDS and another generation has come of age during HIV/AIDS. A lot has been learned, but it is not going away any time soon. I don’t know anyone who hasn’t lost a friend or family member to AIDS or who doesn’t have a friend or family member with HIV.

I spent 9 years on the front lines in those early years. I thought I’d share some of my experiences in various posts throughout the summer. I’ve mentioned this first encounter in a previous post. The New York Times had an excellent Opinion article, The Death Sentence That Defined My Life.

I’d also like to invite you to join me September 18, 2011 for the C.A.R.E.S. AIDS Walk in Sacramento, California. There aren’t a lot of details up on the website yet, but if you email me, I’ll keep you posted!

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