HIV Story for Two
It was as though only minutes had passed since we had seen each other last. We had found each other again, and it was a wonderful reunion of our souls. I convinced him to move to Santa Fe and join me in a city that actually honored same-sex couples – something we had never experienced. I shared my stories of living in San Francisco where the entire community supported AIDS victims in so many ways like publicity for fundraisers, the AIDS quilt, the San Francisco Gay Men’s Chorus, the AIDS Walk, and San Francisco GAY PRIDE. I shared my dream with him to bring that same level of progressive consciousness to life in Santa Fe as a public figure working through my new career at the newspaper. He went back to Arkansas to pack and get tested for HIV, and I stayed here to continue the dream and get tested for HIV. I had already established my total support of a young doctor, Trevor Hawkins with the Visiting Nurses Association, who was treating AIDS patients in Santa Fe – long before there were any real treatments for HIV. At that time, artistic and beautiful young men were dying of AIDS in Santa Fe almost weekly. This was the time that the AID & COMFORT Event was created to support AIDS victims, and it quickly became “the party” of every year. The newspaper was a sponsor of the event printing ads and editorial about AIDS in Santa Fe constantly in support of Aid & Comfort. The HIV test results came in with a negative for me and a false-positive for my partner, who was told by health workers in Arkansas that a false-positive was the same as a negative.
My partner and I had an unbelievably wonderful life in Santa Fe, enjoying the comfort of being ourselves publicly. We were both deeply involved in supporting the AIDS causes throughout the years. We led the Santa Fe PRIDE Parade each year in my red, Cadillac Fleetwood with the parade judges in the back seat – American flags hanging everywhere on the car. The newspaper sponsored the Santa Fe AIDS Walk each year, and we raised lots of money for the causes. Aid & Comfort got bigger and better every year. I will never forget the year that Carol Burnett was wearing a Bob Mackie cocktail dress to auction off as a fundraiser at Aid & Comfort, but no one was bidding on the dress. Carol and the auctioneer slipped behind the curtain and exchanged outfits: she came out in a tuxedo, and he came out in the Bob Mackie cocktail dress – it sold for a small fortune. My partner and I had both become very established in our careers here, and we moved into a glass house on 8 acres, 14 miles out of town on top of a small hill with an unobstructed view of the Ortiz and Sandia Mountain ranges. LIFE was amazing and good. In 1996, Southwest CARE Center was founded by Dr. Trevor Hawkins who continued to treat AIDS victims with the new protease inhibitor drugs – working miracles as treatments for AIDS victims in Santa Fe.
My partner began to express concern about feeling weak. He would go to our family doctor who found nothing wrong. He then developed pneumonia which was treated with antibiotics, but no further testing was done even though we were openly gay as a couple. We went to our best friend’s wedding in Phoenix where he became even weaker, and another doctor tried to diagnose Valley Fever – it wasn’t. One doctor after another found nothing that related to their specialty, and he got weaker and weaker. After many trips to the ER, he announced that he would not leave there until they told him what was wrong. Finally, a new doctor from Southwest CARE, Dr. Michael Palestine, examined him and recognized Toxoplasmosis – a disease reserved for pregnant women and men with lowered immune systems as in AIDS. My partner actually had only 2 T-cells when his HIV+/AIDS diagnosis came, and life changed totally that very day. He was given a sulpha drug and sent home. I remember telling him as we drove home that I did not how we would handle AIDS, but I knew that we could and we would – together. He just kept getting sicker and weaker with the sulpha treatment, and finally, I realized that I had to get him back to Dr. Palestine. He was now too weak to walk. I dressed him and placed him in his walker-chair, wheeled him out the front door and turned him backwards, and then tilted the chair to take him down eight steps backwards to the garage. He later told me that had been the most frightening moment of his life…mine too, but for different reasons: I knew he didn’t have long to live if I didn’t get help. We made it to Southwest CARE, and Dr. Palestine hospitalized him to correct the drug problem, which turned out to be an allergy to sulpha. He finally left the hospital with a broken spirit, and he had suffered brain damage which left him numb on the right side of his body. At home, he was coming back so slowly with home healthcare therapists when he developed shingles over large parts of his body, and then, he developed a herpetic eye infection. The eye doctor told me that the eye drops I would have to give him would be like putting car battery acid in your eyes. I will never forget the screaming as each drop went into his eye. I was more tired and devastated than I had ever been in my life, as I came to the realization that I probably needed to be tested also – not probably, definitely needed to be tested. Of course, I tested HIV+ too, and Dr. Palestine told me at the time that my blood pressure was more likely to kill me than HIV – no surprise there, right?
Our life went from blissful to frightful almost overnight. We went from happy supporters of all of the AIDS causes to delicate AIDS patients of Southwest CARE. Fortunately, with treatment for HIV, I had remained strong and my blood pressure was under control, so I could be the primary caregiver for my partner. Thank goodness, the newspaper had been sold to new owners. My partner began to recover slowly, and his number one goal was to go back to work selling furniture and design at his old job. We bought him a new vehicle with automatic transmission, and he began to drive again. One day not long after, he began working at his old job for two hours a day, then 3 hours, and finally topped off at a 4-hour day for three days a week – and he was so happy and proud. It became apparent that all of this was causing him excruciating pain. He was referred to a neurosurgeon in Albuquerque who was performing a new procedure which ran wires through the spinal column from the brain, down to an implanted battery which had a remote-controlled signal to treat the pain. We then went through four neurosurgeries to get the entire system implanted into his body for pain control. It worked very well, and each week I would wrap him in a belt and hook up to a control panel to recharge the battery. Everything went well for several years, until a cough led to a biopsy which showed cancer in his lungs. We then began chemotherapy and radiation appointments which seemed to be unending. He then began to complain about the vision in one eye. The ophthalmologist ordered that he wear a patch over the eye and informed the oncologist that brain cancer was highly likely. Hospice followed quickly after that, and the next two months were sweet in togetherness and bitter beyond measure for what we both knew was the inevitable ending to his story. I took the bed out of the master bedroom and replaced it with his hospital bed and turned it to face the sunset which he watched every evening through a large window. He told me that he wanted the flowers to be all red, except one yellow rose to stand out against the others. Each week, Hospice would bring some leftover flowers, and there was always one yellow rose in the bunch – amazing how the worlds are so connected. Near the end, I would take the yellow rose and pass it back and forth under his nose as he took deep breaths to take in the fragrance. I dried the last yellow rose, and I still have it – 9 years later. On his very last day, I had a Medicine Man come and deliver his last rites in Native language prayers. He spoke with every member of his family back in Arkansas with his last whispering breaths. I gave him an angel kiss with my eyelashes and reminded him that he was love and light. His spirit left – he was gone. I was still here.
I can’t help but wonder if anyone wondered what happened to me. I was his caregiver 24/7 for nine years. When he was learning to drive again so that he could fulfil his dream to go back to his job, Dr. Palestine found an anal skin tag on me which led to cancer surgery for its removal, which was followed by chemotherapy and radiation of my anus – while I was still his caregiver 24/7. Five years of follow-up anoscopes showed no new cancer cells. As his ending drew near, my best friend informed me that she thought I would die before he did. Yes, it’s that hard to be a 24/7 caregiver, but I made it through. Next came the emotional healing required from losing a soul-mate partner to death. In the next 8 years, I would be hospitalized twice with sepsis, require a green light laser procedure from my urologist, then discover an AAA(abdominal aortic aneurism) which would require placement of a large aortic stint, and in placing the AAA stint, my right renal artery would be blocked, requiring another surgical stint placement to hopefully save my right kidney which remained inoperable for a month. I now have postoperative high blood pressure due to the compromised kidney…still hoping it revives into functioning.
I am so glad that I was there to support HIV causes long before I was an HIV patient. As I look back from where I am today, the thread that made all of this possible was provided by the healthcare professionals at Southwest CARE in Santa Fe. I am now the chair of the CAB (Clients Advisory Board) at SCC (Southwest CARE Center) in Santa Fe which is made up of Service Advocates – individuals committed to the highest quality healthcare for SCC patients. Last year, I was one of the two speakers at World AIDS Day Candlelight Commemoration in Santa Fe. The other speaker was that young doctor, Trevor Hawkins, who founded Southwest CARE Center and saved so many lives here in Santa Fe. People who attended paid me wonderful compliments on the program, but I was most impressed with how it changed me – on the inside, opening my heart even more. I have just been asked to speak again this year. I wrote an article which was published in the Albuquerque Journal and trended online for several days about the history of AIDS from the time of a sure-death sentence to today’s patients who are living healthy lives with HIV for long periods of time.
ONE thing I can let you know for sure: it has been the doctors, nurses, clinicians, caseworkers, phlebotomists, and mental health counselors of SCC, Santa Fe which brought me through. And guess what: I AM STILL HERE. Thank you, Southwest CARE in Santa Fe.