What a dramatic year-end 2015 has been!
On the homestretch, we have actor Charlie Sheen's disclosing his HIV status and bringing HIV back into the news along with all the needed controversy about stigma causing activists to raise their voices loud once again and educate the public.
Ever the performer, Sherri Lewis takes to the stage to share her story of her HIV diagnosis 30 years ago before bursting out into song at "Our Name is Barbra" at the Rockwell Table and Stage, April 2015.
I am so grateful for my younger colleagues who have carried the torch so there is no silence. And thanks to Charlie Sheen for ending that long stretch of complacency. Even though there are updates and conferences and thankfully new effective and less toxic medications for treatment and prevention it is largely within the HIV community.
Not always leading with my HIV status as suggested by my therapist and an old friend who had done the same.
"It's too bad you can't just sing without always having the HIV narrative." He said.
I heard him loud and clear. And while I know my living with HIV story is an important part of my life since 1985 I had stopped thriving and allowed HIV to be bigger than me.
I had been a lone female face in the public eye in the early days of AIDS when suddenly I was outed by a local television news outlet in Boston while telling my story in a high school without my knowledge. And though I asked that she not show it on the news she kept glowing about how inspirational it was and aired it anyway. I was thrown into the public eye. I found I couldn't be a public person and a private person at the same time. So I moved forward giving an interview with a trusted journalist for the Boston Globe, a relationship that continued for several years as they followed my evolving story.
I spoke even though the climate and stigma for HIV was at it's highest. Students needed to have permission slips signed by their parents to approve that they could attend a talk about HIV by someone who actually had HIV. It was not uncommon that students weren't allowed or a speaker could be handcuffed or canceled.
Sometimes the fear and hostility came out of the audience, however most were caring and wanted to hug me afterwards. I have file cabinets filled with heartfelt letters and drawings from those years of talks. I cherish them as they now age in their folders.
From the beginning I had been a reluctant AIDS activist. But when a dying friend couldn't make it to his speaking engagement and asked if I could cover for him, I said "yes" even though I felt ill equipped and frightened.
The torch had been passed.
From 1987 to 1999, I spoke at 150 speaking engagements a year, attended medical updates and trainings while testing addicts for HIV and giving results. I was working at on a research program at Harvard, counseling and facilitating support groups focused on living with HIV, my personal goal.
I wanted to live.
I wanted to be here when they found effective treatments, and they did. I didn't want my mother to have to bury her daughter. And she didn't. She's now 85 years old.
In 2013, I left my home in Los Angeles to visit my mom in Florida. Though I hadn't seen her in two years I spoke with her several times a week. She had warned me over the phone not to get scared when I saw her.
"I've gotten old." She said.
I laughed and said, "Don't worry mom. I know what old looks like!"
What I didn't know was how difficult it would be to see my vibrant fun loving mom aka Cookie in a fragile state with a walker standing dead center in her den. It was a game changer. My beautiful mother had aged. This is a blessing that took my breath away.
I stayed in Florida for 8 long months while I got her things in order. I felt displaced until I got a call from a friend in California who had given my name to a NY journalist who was covering the early launch for the first AIDS Museum in Fort Lauderdale with Magic Johnson.
That was a good day.
Surprisingly many of them turned out to be once I discovered my yogi's there and began my practice. My mothers condo finally sold and I moved her out to the west coast with me, a place she enjoyed when she would visit me in years past and where my healthcare and Dr. Judith Currier are a priority. Dr. Currier and I were featured in the i>New England Journal of Medicine's 200th-anniversary documentary.
Dr. Currier and I met at the very beginning of the AIDS epidemic in Boston when she was in residency at one of Harvard's teaching hospitals. We reconnected in Los Angeles when I moved out from the east coast in 1999. She is now one of the leading infectious disease experts. I have been blessed that she has seen me through these years of my first HIV antivirals with great success and continued success with my undetectable HCV treatment through the UCLA Care Center.
In gratitude to POZ magazine for including me in their 100 Long-Term Survivors Issue and for DIVAS Simply Singing for presenting me with the DIVA award this year. Sometimes just being alive has its rewards.