The Work: Grief-Work, Hope-Work, Love-Work

We long term survivors, the first cohort of people with HIV/AIDS, live on full alert. We received our diagnosis before the cocktail approach; before Protease Inhibitors were approved in 1996. We were told we would die.

After my diagnosis in 1989, when I was thirty-seven years old, I thought I might replicate my father’s early death, at age forty-six. Was this my fate? Now, at sixty-eight I’m still here. I attribute my survival to refusing to believe that anyone could predict my death date; I knew the only medication available at the time, AZT, was a death sentence, so I avoided that early ineffective treatment and instead bolstered my immune system with alternative ways of healing. For my healing, I gave myself permission to grieve, to hope and to love.

Grief Work

The early years were all about grief. I enrolled in a Master’s program for counseling, and started to work at the largest AIDS service organization in the Northwest. As a case manager, my grief list grew: Coworkers died. Friends died. Clients died. I threw myself into this work filled with loss. I did the work out of love, feeling compassion and empathy for the many young men dying of AIDS. In my off time I went to movies about AIDS, read books about AIDS, at work we had t-shirts that had twenty-four/seven stamped on them. It was hard to separate. My whole life was centered on AIDS.

Hope Work

Attending a workshop with Ryan Drum, a brilliant herbalist and a storyteller, I gathered my courage to tell him my status and asked him what I could do to protect myself. He said a doctor in Vancouver, BC, treated HIV with subdermal St. John's Wort oil, made from a common flowering plant. I asked him how to use it. His answer: rub the oil on the inside of my arms or thighs. St John’s Wort was my first remedy. At first, I bought the oil, then I found the plant and made my own infused oil and tincture, which I learned to do with many plants.

Now I’m processing elderberries to protect myself against Covid-19. Nightly, I rubbed the SJW oil on my skin as an elixir to support my immune system. St John’s wort was not the answer of course, my immune system’s T cells continued to drop; I had multiple skin irritations and swollen lymph glands. But applying the oil felt right and St John’s Wort became my main herbal ally.

I kept studying herbs in the Wise Woman Tradition with Susun Weed, I became certified as an herbalist and created lists: what to use if an infection was viral, bacterial, fungal or parasitic, and a list of available alternatives and natural remedies. I wrote articles for the Health Corner column in the Babes Network Newsletter sharing health and herbal information with other HIV-positive women on how to support the immune system.

Those early years, I intentionally thought of my body as an experiment and dedicated myself to preventative health. Herbal knowledge helped me learn how to fortify myself. My goals were to keep the microbiome in my gut as strong as possible, and to tone and strengthen my system. I put off taking Western medications for thirteen years, which allowed me to avoid the awful side effects I saw so many others experience.

All my health activities cultivated a feeling of hope. This section on hope is the longest because of the amount of time I’ve dedicated to supporting myself and building hope. I pasted positive information from AIDS magazines (Pos, A&U, Plus, Positively Aware) and information from Buyer’s Clubs, into a blank notebook: recipes and herbs to use for nutrition and prevention, new drugs and experiential treatments, artists and writers whose work reflected their journey living with HIV. I collected anything I found about Keith Haring’s art () (I have memories of seeing his art in New York City subways in the seventies), Tori Dent’s poems, or Paul Monette’s memoir, any writing I could find about AIDS made its way into my small notebook.

This scrapbook became my Book of Hope. This homemade journal helped me remember what was important to survival: bodywork, writing, and creative art. It was a touchstone I turned to when I needed a reminder that I had options.

I’ve incorporated Feldenkrais and Continuum movement work into my life, which has rejuvenated my whole body at a cellular level. My Continuum mentor, Susan Harper, told me that the way through grief and suffering is through creativity. During Continuum workshops I created drawings of the transformation I felt in my body. My creative expression and my study and certification in the Wise Woman Tradition, led me to claim the title Health Artist.

But then, in 2003 I had my first serious infection; shingles over my eye. It was miserable. My body was clearly telling me it was time to start Western medications. By then the medications had become more effective with fewer side effects, so I started the cocktail approach; three drugs at once. At first it didn’t work. The drugs made me manic and gave me insomnia. It felt like a tidal wave. After two difficult years of trial and error, I finally found a regimen that worked for me. I continue to keep my body strong through my herbal and movement practices. For the ongoing healing of my mind and spirit, I turn to my writing and creative practices. In the last fifteen years, I’ve published three poetry books and am currently writing my memoir.

LOVE WORK

This brings me to the importance of love. I did my work with AIDS service organizations out of love for twenty-one years. If I had not had my partner, John, I don’t know if I could have done the work for that long. Love with deep connection is a precious gift, especially when we’ve met the person who sparks joy in our heart, which is what I felt on meeting my partner. He is HIV-negative and he made the decision to stay with me after I was diagnosed. He is my strongest ally and supporter.

I’m grateful for his love. We share similar values and interests. When I met him, he had studied with Susun Weed; together we took seasonal walking tours in Chinatown. We’ve been experimenting with herbal medicine since we met. We keep growing, learning and exploring as we have from the beginning. Together we are stronger. We don’t drink alcohol, but we still toast each other. Our newest remedy is celery juice cocktails. “To a long life!”