artist in the glossy, dangerous and colorful ‘80s when I drank in those times of love and excess and used a white-powdered substance rumored to have been non-addictive.
Back then, after testing HIV positive, I had a five-year life expectancy. There were no treatments yet, only days of horror, grief and horrible long hospitalizations. What an awful joke to be handed a death sentence on your birthday! What meaning can I make of this powerful coincidence? I saw clearly it was a choice between life and death.
I was a-symptomatic and healthy, though traumatized. I also felt like a freak, being the only female that I knew of who was HIV-positive! I was engaged to be married in a couple of months and determined not to relapse from this frightening information. The biggest miracle was that I had no desire to use drugs, alcohol or sex. I was obsessed with how to stay healthy and alive.
Despite these facts and reality checks every four months to check my t-cell count, I became an AIDS counselor (that’s what it was called in 1987) and a substance abuse counselor. I was hired for a Harvard research project about addicts and HIV, and I was their perfect hire. They literally discovered me when I was sharing in a twelve-step meeting held at Harvard when they invited me to share with their staff. Little did I know that it was a job interview.
I began counseling, testing addicts, running support groups for people with HIV, and giving test results. I was going to therapy while attending my twelve-step meetings and adjusting to living in Cambridge as a newlywed with a 15-year-old stepson at home. I was overjoyed being a stepparent. The best part of my struggling marriage.
My husband and I had plans to have our own family while I would continue with my career in music and entertainment, but my HIV diagnosis left our plans shattered on the roadside of life as I watched friends get married, have careers and babies. I trudged forward exercising gratitude but not happy.
We both worked hard at staying married, whatever that meant now. There was no future family, career or hope. We lasted seven painful years before we separated and eventually divorced. I am still grateful that I ended up in Cambridge, surrounded with the world’s smartest doctors, best hospitals and best friends I’d ever known. I was surrounded with love even from my ex-husband. He was so sweet and generous in between his extreme highs and lows, rage attacks, name calling, throwing things.
Leaving him was a huge step toward my expanding life of stable health with holistic treatments and a natural foods lifestyle of macrobiotics. I began performing again. Life was good. Still, a cloud always hovered.
Then in 1996, nine years since my testing HIV positive, my symptoms began. Doctors at the time figured I was infected anywhere between 1983 and 1985. I got sober in 1985 and had those mysterious flu-like symptoms early but then they disappeared. So I had been living with the virus for several years, though I didn’t know it. No one would have known, since there were no tests yet.
By1997, the effective antivirals were available, and I was ready to take them having experienced fatigue, rashes and a decline in my T-cells from a healthy normal level in the 700’s to a low of 225 t-cells. I was reluctant to start this medication, but I witnessed others getting well by taking it. We didn’t know the long-term effects of these new medications but when your t-cells begin to crash, it’s time.
Thankfully, in a few weeks my health was restored, my t-cells back at a healthy normal range. Yet, I watched my beautiful dancer’s body begin to morph out of control. Skinny arms, belly fat and facial wasting. This affected my self-esteem, my sexuality, my work as an actor and performer, and overall confidence.
The treatment for the lipodystrophy was part of a study using injections of human growth hormones. The growth hormone didn’t do anything for me except cause me pain in my swollen hands and feet from receiving the same level of growth hormone that a much larger and heavier man received. This was a typical situation where clinical studies and treatment research, as well the definition of AIDS (which determined whether or not you qualified for government benefits), focused more on male bodies and symptoms.
Women had to fight to get clinical studies for HIV/AIDS focused on women, and a list of AIDS symptoms specific to women. For my facial wasting, I got filler before Sculptura was available and was looking good and feeling free again.
I chose to relocate to sunny Southern California, where I immediately found Dr. Judith Currier who had transferred to UCLA after her Boston residency. As an infectious disease physician, her medical perspective and expertise helped me make many decisions along this now decades-long journey.
In the beginning I lived one day at a time, then a month at a time, and then five years. My forties, I celebrated. My fifties, in the best shape of my life discovering hot yoga, singing, and my first passion: ballet. Still divorced, no partner, no children, but maintaining my grateful spirit. One pill a day and bloodwork once a year.
My sixties began stressed, mentally and financially, with caring for my mother who was diagnosed with dementia ten years ago and needed to be moved from Florida. After nine months of selling her condo and packing her belongings, I brought her out to California to be close to me but in the meantime, I had lost my job as a private substance abuse companion, my health insurance, and my car.
I had no idea the stress I was taking on when I chose to care for my mother. With no family to help, I had no choice. I was not taking care of myself the way I had, and my AA meetings were cut back to only the ones I could walk to.
I stayed with my mother in her assisted care during COVID in her 400-square-foot room with our little dog Romeo. I was isolated and felt really down from all of this. I developed colon cancer a couple of years ago after the COVID-19 pandemic.
I’m cancer-free almost three years now and only need checkups every couple of years. My 94-year-old mother is well cared for in a nursing home. Every day I get to see her down the street from where I now live in a lovely apartment only a few blocks away and near bus-stops since that is how I get around.
When I turned 70 this year, I felt like I broke through the finish line! A long-term survivors’ marathon!
I’m looking forward to my healthy future. Having lost so many people who didn’t get to grow old, it really is a privilege growing older. I am still grateful.
Sherri Lewis is a Board member for the Foundation of the AIDS Monument.
