By Sherri Lewis

The following is an interview with River Huston, contributor to the HEAR Our STORIES Project and participant in FAM’s first STORIES Circle event, conducted by FAM Board Member and POZ magazine writer Sherri Lewis:

Sherri: Hi, River. It was so great seeing you at the Stories event on the site of The AIDS Monument. Thank you for participating. Your circle of storytellers was very moved by your story. I thought you could share some of it here for our newsletter. Tell me, when were you tested for HIV?

River Huston: I tested positive in 1990 in New York City. I was asymptomatic. I got tested when I fell in love with a man who encouraged me to get tested. I was in great shape, worked as a fitness trainer, ate brown rice, and was sober five years — so I was shocked when I tested positive.

Sherri: Did HIV progress to an AIDS diagnosis?

RH: Eventually, I went from HIV-positive asymptomatic to an AIDS diagnosis with 100 T-cells in 2005. It took several tries to get a combo that did not have debilitating side effects. Truvada and Kaletra worked for many years until it started causing a liver problem and stage one kidney disease. I am on Odessfy now.

Sherri: Did you have support?

RH: I did not have support most my life. In the last year I started attending a biweekly group of long-term survivors who have mental health challenges. It is saving my life.

Sherri: You were also very productive. I remember seeing your book, A Positive Life: Portraits of Women Living With HIV that was published in 2000. I gravitated to that and to you when we met over 20 years ago at an AIDS conference, both of us doing safe sex education. You did a funny outrageous show with sexual props! Hysterical. What was the name of that show?

RH: The show was called, Sex, Cellulite & Large Farm Equipment: One Girl’s Guide To Living & Dying. I ended up performing around the world for 28 years.  I wrote five more books including three books of poetry and was named Bucks County Poet Laureate until they wanted to take my award back after I read a poem about being sex positive while living with HIV.

For ten years I wrote a monthly sex column for POZ Magazine starting with the first issue. I eventually settled into painting and photography.  You can see my work at www.riverhustonart.com and for the books and performing you can read more at www.riverhuston.com

Sherri: What would you say is the difference between positive women and men and their needs.

RH: I think positive woman are more isolated. It has been a very lonely journey for me until I found this Zoom group created by a psychiatrist. For 29 years, I felt like I was in solitary confinement. In relationships, HIV was a dealbreaker.

In the straight world, disclosing is like dropping a bomb in someone’s lap. Even today, it is regarded as the 1980s AIDS instead of the manageable disease it has become. It has been heartbreaking, depressing, financially frightening but, mostly, a lonely journey. I’ve contemplated suicide for most of it. I suffer from major depression, PTSD.

My support group I mentioned is amazing, but it does not make it go away, just helps me manage it. I do not want to kill myself anymore, but I have no fear of death and if my life was over today, I would be at peace. I didn’t want children — I was too sick — but I wish I had grandchildren.

Sherri: Were you ever married or in a serious relationship?

RH: I was married in 2010 to a man 14 years younger than me. At that time, I was on death watch every day from another chronic, acute illness. I had IVs every week for close to 17 years and was sick most of the time.

Duncan came into my life when I felt so debilitated. I did love him, but as they say now, “We were not a match.” Other than that, there have been no significant relationships. I’ve gone decades without being touched.

Sherri: How did you find your doctor?

RH: I had one doctor for 20 years.  She was a primary, not an HIV doc.  I thought of her as my medical concierge. I was so sick for so long that she would admit me to the hospital to bring all the specialists to me instead of doing office visits. She kept me alive.

I would carry all the pertinent paperwork whenever I traveled, because there was a good chance I would end up in emergency room with an uncontrollable bleed. I became very assertive as my own advocate. No matter how sick I was, I continued to work. Sometimes the only time I felt good was on stage.

Once I left Pennsylvania 11 years ago, my medical care has been hit or miss. In the Caribbean, I had a doctor yell at me that I would not be able to leave the clinic unless I got a flu vaccine. Really yelling for the guards to lock the doors and telling me I was going to die. If I was in her office and broke down crying, she would just start answering her texts and wait me out without a word.

In Mexico, it was another free clinic. You could not get care unless you did blood work every three months. Every patient had to come on the same day. Starting at 6:00 a.m., they did all the bloodwork and the waiting room looked like a Fellini film, with convicts all chained up and guarded by their heavily-armed masked keepers, to men in full drag. I was the only gringa in the place. None of the doctors spoke English.

I lived in all these places because I could live cheaply and not depend on anyone for help, but five years ago I became sick while preforming in India and my body did not recover from a respiratory ailment that was compounded by vertigoes migraines. I could no longer walk, let alone work.

I came to the U.S. for treatment and went to Stanford. They had the best doctors ever — both physical and mental. Now my first year at UCLA, I have been through three doctors, but the last one I hope is a keeper.

Sherri: How did family and friends respond to you when they knew you were HIV positive?

RH: Everyone was angry. My mother said, “How can you do this to me?” My brother would not let me touch his newborn, and when my father’s fourth wife found out, she asked me to leave immediately. My AA sponsor told me to keep it to myself.

Sherri: What was your life like after diagnosis?

RH: After the shock, I had no fear. I spoke up, wrote poetry, books, columns, I got on stages around the world, and if I ever felt scared, I would say, “What’s the big deal, you’re going to die anyway.”

I think HIV makes death real. Where most people my age — 61 — might just start thinking about their mortality, I’ve had a will and wishes in place since I was 30.  I’ve had to keep changing it, because I moved about 12 times in the last 30 years. I witnessed many people and pets die, so changes had to be made.

Life was very clear to me early on; it’s not about the money, prestige, or your body, it’s about the journey to self-acceptance and mental peace, maybe even joy. HIV sent me down a road less traveled. Some of it amazing, some of it a solitary hell.

Sherri: How did your health stand up both physically and mentally through all this?

RH: Since I was diagnosed with an acute chronic autoimmune disease the year after I was diagnosed with HIV, I’ve had to battle both illnesses. My body is worn out from the war. My mind is bent.  As I write this, I just spent a month in bed with a variety of ailments and a visit to the ER.

It never stops, and when I am not physically ill, mentally my mind is like going into a bad neighborhood at night.

Sherri: You said you suffered from depression for many years. How did you deal with the depression?

RH: When I was young, I was creative. I did all the things I do now: write, perform dance and paint. There were times in my adolescence and 20s that I used drugs and alcohol to ease the mental anguish. I’ve tried many prescribed medications and they sort of work, but only if you meditate, have support, exercise, eat right. There’s not been a pill or hallucinogenic trip that has fixed anything for me. It helps, but you must put in the work.

Sherri: How were these years on antivirals?

RH: I did not have to deal with HIV ’til 2005, and after a few tries, I was OK. I had some minor side effects, but the major problems have been the cumulative effects of taking these powerful medications over 16 years. I have problems in my gut and chronic migraines.

Sherri: How’s your liver now?

RH: My liver is normal, now that I don’t take Truvada.

Sherri: What is a day in the life of River Huston like now?

RH: I get up before dawn, and no matter how crappy I feel. I go out for an hour-long, high-speed ride on my bike or a two-hour brisk walk along the beach. I am never not in awe at this time of day.

Even today I went out, but only for an hour. I suddenly knew as I was walking that I could keel over any second and better get home.

Then I take the dog out and that is when I do photography. He sniffs and I click. We come home, have tea on the terrace overlooking the Santa Monica pier and then attend to emails, texts, post some ramblings on TikTok, Instagram, Facebook and sometimes NextDoor. That is how I sell my work. I have some paintings in galleries on the East Coast but sell privately as well.

I also might have an appointment to meet someone at my downtown studio to look at paintings; otherwise, I paint. I come home, walk the dog, take pics, come home, stream and maybe two times a month take a hallucinogenic trip.

I have not met someone in LA who is readily available to go for a walk. It is a solitary life.

Sherri: What pisses you off most about living with HIV?

RH: The rejection of possible partners, even when I settle for someone so inappropriate just because they are willing to touch me, they still have the upper hand. There is never a level playing field. I used to tell a joke that went like this:

Man: “That was incredible, wow.”

Me: “I know.” (As I curl up in his arms.)

Man: “Just one thing: Can you not tell anyone we are sleeping together?”

Me: “What????”

Man: “It’s just that if my work finds out …”

Me: “But you’re self-employed.”

HIV downgrades you, no matter how fabulous you are.

Sherri: Can you think of any gratitude from living with HIV?

RH: Really? None.

Sherri: I so appreciate your honesty, your courage and your generosity. Thank you, River Huston, for your years of service. You are a special human being.