Interview with HIV+ Advocate Pam Yelsky
By Sherri Lewis
The following is an interview with Pam Yelsky, who was a dedicated volunteer for Women at Risk, a small but mighty women’s AIDS organization located in Culver City from 2001 to 2009. Pam tells FAM Board Member and POZ magazine writer Sherri Lewis the story of how AIDS — and the child she always wanted — came into her life and the life of her step-son Beau.
Sherri: Hi, Pam! I’m so happy to speak with you again. Thank you for being so enthusiastic about sharing your story. Your journey has had significant battles, heartbreaks and victories that have brought you to this day and I am so grateful. Without further delay, let’s start at the beginning.
Pam: Thank you for this opportunity, Sherri. I hope I’m not babbling, but here it goes.
Sherri: Where and when were you born?
Pam: I was born in Illinois on March 18, 1960, but grew up in Torrance, California. Growing up, all I ever wanted to be was a mother. A brief, failed marriage had left me alone and childless at the age of 28. Then I met Jerry in 1988, a Los Angeles attorney. We were introduced by a girlfriend of mine. Sparks flew between us from opposite ends of the table. A couple of weeks later, he asked her for my number.
Sherri: Promising beginning.
Pam: Within weeks after meeting him, I spiked a fever of 105, with projectile diarrhea and vomiting, and began a three-week journey in and out of Northridge Hospital. Initially, I was told that I either had lupus or leukemia — which left my mother totally hysterical, as she had already lost one child, my developmentally disabled brother Don, who passed away peacefully in his sleep at the age of 29.
At the end of three weeks, I was told that it was good news, and that I did not have anything “potentially life threatening.” The doctor told me it was Epstein Barr virus (aka, chronic fatigue syndrome). I was told to slow down (at the time, I was working 12-hour days), consult a nutritionist, and just plain take better care of myself.
Sherri: When did you go out on your first date? What happened?
Pam: Our first date was in August 1988. During dinner that evening, he talked at length about his son, Beau, and how painful it was to only see him every other weekend since his divorce from Beau’s mother, four years earlier. He went on to tell me that Beau had been born nearly 15 weeks prematurely, weighing only one pound and ten ounces at birth. The odds of his surviving were low, especially since he had a defective heart valve and needed surgery at two weeks old to repair it.
When Beau was four years old, Jerry received a call from someone at Cedars-Sinai, telling him that they believed Beau had been exposed to the AIDS virus when he received a transfusion during his surgery. Jerry and his ex-wife were devastated. He said it took him months to convince her to take Beau in to be tested. He was diagnosed HIV positive and began taking AZT and DDI at age five. Jerry went on to explain that Beau was everything to him, and that if his HIV status was a problem for me, then there was no reason for a second date.
As a heterosexual woman, I didn’t know a lot about HIV, but I did know that I couldn’t get it from being around the little boy or from hugging him. I knew that it was passed through bodily fluids (blood, semen, vaginal secretions). I expressed my desire to continue dating him and, hopefully, one day meet Beau.
After three months, it was apparent that we were more than just “dating,” and that we were both looking for a long-term relationship that could possibly lead to marriage. Jerry suggested that I meet Beau. We decided on a breakfast meeting.
The morning they were to pick me up, I was a total basket case. This little boy whom I’d never met, had so much power over my future. If he didn’t like me, I was “out” — period.
When they rang my doorbell, I took a deep breath and opened the door. Nothing could have prepared me for the rush of emotion that washed over me when I saw Beau standing there, hiding behind Jerry’s leg! At the time, Beau was almost six-and-a-half years old but he was still the size of a healthy three- or four-year-old, due to his severe prematurity and HIV.
When he peered around the safety of Jerry’s knee, I saw a shock of bleached blonde hair, coke bottle glasses, with one crossed eye, and a well-worn Felix the Cat stuffed animal clutched tightly against his chest. He was wearing a magician’s cape, and held a sparkling magic wand in his other hand. My heart fluttered at the sight of him.
I got down on my knees, introduced myself and told him that Felix the Cat was my favorite cartoon when I was little. He smiled shyly, and we headed to Jerry’s car to go out to breakfast. As we approached the car, I saw that his car seat was in the front seat of Jerry’s Saab and heard him whisper to his Dad, “Where’s she going to sit, Dad?”
Jerry replied, “Where do you want her to sit, son?”
Beau didn’t hesitate for a moment, and piped up, “In the trunk!”
I had to stifle a giggle as I approached the car, opened the back door and said, “I will sit in the back seat, Beau, so that you can sit up front with your dad.”
I got a huge toothless smile … be still, my heart!
As we got to the restaurant, and approached our booth, he again wanted to know where I was going to sit, so I slid into the booth and said, “I’ll sit here, Beau. Why don’t you sit next to your dad, so that I can see and talk to both of you.”
Breakfast was fun and Beau was quite animated. By the time we got back to the car, he asked his dad to put his chair in the trunk so that that he could sit on my lap in the front seat.
From the time I met Beau, I knew that we would share something really special. Two years later, at age eight, he walked me down the aisle to marry his dad on August 25, 1990, and officially became “the child of my heart.”
By the end of 1991, we knew that we wanted to add to our family, so I booked an appointment with my ob/gyn for mid-January 1992 to speak with him about my getting pregnant. He had some concerns, since I had been having abnormal Pap smears for years, and wanted me to have two “normal” ones before giving me his blessing.
Near the end of our visit, I told him that I wanted to be tested for HIV. He was horrified that I should ask for such a test and said that he had never given one to any of his patients, and asked why I wanted one. I explained that Jerry and I both wanted to be responsible, and that since we never gloved up to take care of Beau if he had a skinned knee or arm and Jerry’s hand always shook when he gave him his growth hormone shots, we wanted to make sure we were both okay. He acquiesced, had the nurse draw my blood, and told me he’d have the result in a week.
Eight days later, on January 23, 1992, working at my desk, my phone rang. My doctor proceeded to tell me that he needed me to be in his office at 4 that afternoon with my husband. I started sobbing.
He explained that my test came back positive and that I needed to see the top infectious disease specialist at Cedars-Sinai to be re-tested, have the Western Blot test done, and if I had a second positive result, possibly start on medication immediately, depending on where my T-cells were.
Jerry and I were both basket cases as we waited for this new doctor to walk in the room. I felt immediately at ease with this doctor, since he and Jerry went to Fairfax High together. I looked into his warm, compassionate face, and felt I was in good hands, no matter what the results of my second test were.
Three days later, he to delivered the news that would bring me to my knees. Not only was I HIV positive, but I had what they called “full-blown AIDS” and only 93 T-cells. My guardian angels must’ve been watching over me, because he told us that had I not asked to be tested and gone undiagnosed, I might not have survived a year. This was less than two months from my 32nd birthday.
My first thought was, “Thank God I have Beau, because I will never have a baby of my own.”
It’s important that I say that Jerry’s test came back negative, as did the one my ex-husband, Jose, took, and the boyfriend I had briefly in between. The reason for this is because there is less than a 1% chance of a woman passing HIV to a man, but not the case from a male to a female. Transmission rates from a simple tear or irritation in the vaginal wall makes it easy for HIV to enter the bloodstream and start destroying healthy T-cells.
My HIV specialist was able to trace my infection back to 1981, when I was only 21e years old. When he asked me about “high risk” relationships, I thought back to Ron, a young Latino man whom I was engaged to at the time. He didn’t come home several nights, and after crying for hours, he confessed that he had been bi-sexual in a “previous life” and that he had seen his ex-boyfriend a couple of times to make sure that part of his life was behind him. My doctor said that was perfect timing, since I was hospitalized in April 1988 and seroconverted. The disease began ravaging my immune system.
The handwriting had been on the wall for years from my early 20s, when I had monthly yeast infections, chronic recurring sinus infections and bronchitis that didn’t respond to antibiotics, and Frankenstein-like swollen lymph nodes in my neck that one doctor shot Cortisone into. No one thought that it could be HIV back then, because I was a middle-class, heterosexual woman who didn’t use IV drugs.
For that first year, I hid my medication from Beau, even though we were taking the same medications, but Beau thought his pills and powders were to help him grow since he was premature.
March 1993, sitting in a conference room at Cedars with Beau’s doctor, his nurses, his dad, mom and step-father, his dad took out all of his [Beau’s] pills explaining what each one was for and told him that he was HIV positive. His lip quivered. Before he could react, I took out my pills, which were the same, showed them to Beau, and swallowed them in front of him.
I shared with him that I was HIV positive, too. I told him that we were going to get through this together, and that he could always come to me with questions, and if I didn’t know the answers, I would get them for him. When we got home he jumped into my arms and whispered that he was so glad that “his Pammy” had it, too, because he couldn’t bear going through it alone and would probably have killed himself. My heart shattered hearing these words from such a sweet boy only 11 years old.
For many years, Beau and I took turns having health challenges, both being hospitalized for long stints for strange infections, “fevers of unknown origin,” etc., but never being in the hospital at the same time, being each other’s mental, spiritual and emotional support when times were tough. I had serious issues with the medications, including morphing into what I referred to as The Hunchback of Norte Dame, or “Eggs on Legs” (a hump on the back of my neck; big, bloated stomach; no ass; and stick arms and legs). These were all the side effects of taking the same dose of various medications that they were giving to 200-250 pound men.
I quickly realized that I couldn’t complain about the side effects of these drugs in women if I wasn’t willing to be involved in studies, so I became a guinea pig. As each regimen failed after six to nine months, I started another one, including the most horrific one called Fuzeon, which involved two injections in my bloated belly each day. The injection sites would swell up like red, angry, hard baseballs, and when my tummy was too sore and scarred to take it anymore, I would have to inject the drug into my scrawny thighs and the results were the same. Swollen, red, angry baseballs, only now they affected my ability to walk. Each step was painful. I did this for one year and told my doctor that it was a quality of life issue for me. I couldn’t do it anymore. We tried something else.
When Beau was six years old, doctors told his parents they would be lucky to have him until he was eight. This went on for many years, given intervals of two more years as he battled lymphoma at 12, becoming cancer-free four months earlier than anticipated. He was a true warrior, and a shining light in so many people’s lives, touching everyone he met when he shared his story and his status in high school and his college.
We spoke together once at Cal State Long Beach. I was so proud of him and his willingness to share his journey and teach safe sex and HIV/AIDS prevention to young people, so that they might not have to share that same journey.
Sherri: Yes, I remember this. Doing those speaking engagements were so powerful that one of his classmates years later came to a speakers’ training to do the same thing as Beau, and asked me how he was doing. But sadly, things started to shift with Beau.
Pam: By 2005, we found out Beau had stopped taking his meds in order to feel more “normal” and party with his friends.
Sherri: His teens. He wanted to be normal. Being a teenager while having HIV in those years especially, coming of age, so hard.
Pam: Yes, Beau became addicted to alcohol and recreational drugs. When he’d been clean and sober for five months, he was rushed to the hospital by the manager of his sober living home, unable to breathe, and coughing so hard he couldn’t stand up. He had just turned 24 the month before.
A battery of tests were run, and we found out the lymphoma was back and quickly metastasizing. His only option, if he wanted to live, was to start six different chemos. He didn’t want to do chemo again, but when his dad explained the alternative, he quietly agreed. In retrospect, I feel guilty for not being more of an advocate for him. He had zero quality of life and spent six months in the hospital locked in his room like the boy in the plastic bubble. He rallied in September 2006, and we were able to bring him home with nursing.
The day after Thanksgiving that year, God was running low on special angels. The child of my heart was taken from us. While I was broken-hearted, I was also happy that he was no longer suffering. The night before he passed, I held him tightly and gave him permission to go.
My mother was staying in his room the night before he passed, helping him get up to use the bathroom when he collapsed in her arms and died. She ran upstairs to wake Jerry and me but Beau was already gone. Jerry jumped on top of him, crying and pounding on his chest, begging him to come back. I had to pull him off and tell him that he was gone and that he deserved peace.
After Beau’s death, I was able to distract Jerry a bit with trips, in between running his business, but by 2009, it was evident to me that he really wanted to be with Beau and that he would never get over losing him. He turned to drugs and alcohol, and began a slow retreat into the darkest places, pulling away from those who loved him most. By early 2010, I realized that I didn’t want to go down with the proverbial ship, and filed for divorce. Our divorce was final in 2012. He never went back to his law office and died in hospice in June 2014, reunited with his beloved son.
After my divorce, I never thought that I would find a man willing to take on a woman living with AIDS, but it did happen, and we have had many wonderful years until various health challenges, including tongue cancer. This put a tremendous amount of stress on our relationship.
I am facing another surgery on my tongue the end of October. Needing peace and quiet time to get myself physically, mentally, emotionally and spiritually ready for my impending surgery, we have separated. At 62, it’s time for me to break out my “spiritual tool box,” and start taking daily care of myself with meditation, journaling, writing, volunteering and speaking in schools about HIV/AIDS prevention. I owe it to myself, and to Beau’s memory.
I was his mother in every possible way, and being his mother for those 18 brief years was my honor and my destiny. His legacy will live on in me as long as I continue to draw breath.
Sherri: Thank you, Pam, from the bottom of my heart. I am grateful to know you and to have known the beautiful Beau.