Kenyan AIDS Activist | Patricia Sawo
Ayanna Nahmias, Editor-in-ChiefLast Modified: 18:00 p.m. EDT, 11 March 2012
KENYA - A story about Reverend Patricia Sawo and an opportunity to enter NPR's 'Three-Minute Fiction Round 8' competition inspired me to write a post about a place and time that I had abandoned in a forgotten recess of my mind.
The BBC interview with the Kenyan AIDS activist struck a chord with me in two ways: first because it made me remember my friend Donovan Grayson, G-d rest his soul, who suffered and died from this disease in 1994. Second, it demonstrated the power of our mind to manifest the insubstantial, ethereal and incorporeal into a substantive reality.
Sawo's story, though tragic in how it manifested in her life, forced me to examine and reevaluate my beliefs and fears. I realized as I listened to her, that I too had experienced the realization of my greatest fears because of my persistent unacknowledged belief that it would eventually happen.
Mine was the false profession that I would never become a single-mom nor allow the attendant tragedies that sometimes befall women raising children alone to happen to me. I secretly blamed these women for their situations, while the thought that plagued my every waking moment and replayed in my head was the fear that it would somehow happen to me. Thus, to my horror, I eventually manifested the tragedy of abandonment, single-parenthood, and divorce into my life.
Sawo, told the interviewer that she previously preached that "HIV was a curse and punishment from G-d for people who had strayed from the path of righteousness." By her own admission, though she lived in Kenya which has a moderate level of infection amongst the populace, she had very little sympathy for AIDS victims or their children. This despite the fact that she was a church leader and trained as a Christian counselor. Her life changed suddenly and dramatically when she tested positive for HIV.
I could definitely relate to her fear at the moment of testing and revelation. Even though I know the possibility of me testing positive is non-existent because of my celibacy, I still feel anxious each time my physician recommends that I have a complete blood work-up, including a HIV test. This irrational fear of exposure to this disease, though the methods of its contraction and the limited lifespan of the virus outside of the body are well documented, the thought of contraction from some youthful indiscretion still haunts me. In my youth, testing positive for HIV was never far from my thoughts, particularly since my ex-husband of twenty plus years was an intravenous drug user.
For more information about HIV and how the virus is transmitted, visit the Center for Disease Control website here.
Sawo never reveals how she thinks she may have contracted the disease, although she was pregnant at the time and married. " Later, she confided in two colleagues, who advised her that seven days of fasting and prayer would bring healing from G-d. But she continued to test HIV positive. When church leaders began discussing strategies to identify and isolate all HIV-positive people, Sawo decided to go public about her status.
But her courage had disastrous repercussions: in two weeks Sawo lost her position of leadership in the church, which forced her to end her studies. Her husband lost his job, and the family lost their home, because of HIV-related stigma. All but two of Sawo’s friends deserted her. Without any form of support, the children had to leave their schools. 'For two years I lived in loneliness and isolation', says Sawo." (Source: BBC World Service)
Published: 11 March 2012 (Page 2 of 3)
My friend, Donovan Grayson, G-d rest his soul, who suffered and died from this disease in 1994; encountered similar rejection and isolation, as well as being ostracized by his family and friends. In 1992, I started work as a project coordinator at the former telecom giant MCI. I had graduated earlier that spring from a small New England college, with a degree in English Literature and a minor in Art.
I was a typical liberal arts graduate with an undefined career path. I took the job as a place holder, while waiting to figure out how I would become the next female master of the universe. It was while at this job that I met Donovan. He was an incredibly lovely, sensitive, African-American man who unobtrusively emptied the trash each evening, and vacuumed the corridors leading to and from the cubicle farm that honeycombed our office suite.
He was of average height, wore a close-cropped Afro with a widow's peak that receded to his ears. His skin was dusky gray-brown, and seemed perpetually in need of lotion. He spoke softly, not quite hushed, more dulcet than conspiratorial, and he seemed an intensely private man. He reminded me of Mr. Rogers because he always wore a button down cardigan, Chino pants and deck shoes. I remembered how quietly and efficiently he moved through the suite, week after week and month after month. I often stayed late to work on my manuscript, and it was usually during these times that we would interact, though in a very polite and perfunctory manner.
At that time I loved plants, and my office received a lot of direct sunlight, and every available space of the window sill was filled with potted variegated spider, golden and sweetheart ivy, as well as several Persian shields. I had recently started dating the man whom I would marry a few months later, and that day he sent a large bouquet of flowers which were sitting on my desk. It turns out that Donovan loved flowers, and though he lived in an apartment in Springfield, Virginia, he had a window box and produced some of the most beautiful perennials. So, when he saw the flowers on my desk, he asked if I would like to come over for dinner to see his garden.
I was young, inexperienced, and egocentric in an appropriately youthful way; and I took his invitation as a sexual advance. Since he was so much older than me, and he was an African-American male, to whom I was not generally attracted, I immediately declined his invitation. Because Donovan was such a gentle and understanding soul, he never took offense and instead spent the next few weeks cultivating our friendship through increasingly intimate conversations. He would bring me little treats and thoughtful gifts, and on Valentine's day he gave me a card and a little stuffed bear. He was such a considerate person that I found myself increasingly attracted to him as a friend and confidant.
During one of our intimate conversations he confided to me that he was gay. He also told me that he was in a very difficult relationship with a man with whom he was deeply in love. The more I got to know him, the more it became apparent to me that his relationship was uneven at best. Since I grew up in a dysfunctional and abuse filled household, I knew the signs of psychological and physical abuse, and though I was young, I knew that Donovan was in a very unhealthy relationship.
When he vented to me, I could see in his face that he was worried that I might be repulsed, or perhaps reject and rebuke him. However, for me, his revelations provided me a sense of comfort that I was not alone in my suffering or the abuse that I had experienced and continued to experience in my current relationships at that time. I remember one time in particular when I was having difficulties with my husband, while Donovan was in the 'honeymoon' phase of his roller coaster relationship.
He suggested that I get away and accompany him and his boyfriend to the Philadelphia Flower Show, which is the largest indoor flower show in the world. This was the first time that I would meet Bill, and I quickly understood why and how Donovan and I became such close friends. Though we were on the surface, very different individuals, damaged still attracts damaged. Sometimes, as in our case, because our interactions with our respective partners was so negative, it resulted in our becoming deeper and more committed friends. In other words, we could not and would not hurt each other because we recognized the vulnerability we each possessed.
As open, ebullient and caring as Donovan was, Bill was in equal measure uncommunicative, furtive, sullen, and selfish. He was a diminutive man of small stature with thinning blond hair. He was so skinny, that he looked like a cancer patient, and his pale white skin and sallow cheeks had a pallor of a tuberculosis patient. Though I was not aware of AIDS then, I knew that he was sick, and that Donovan could do so much better.
After that trip, Donovan became more transparent and shared with me the problems he having with Bill. He confirmed what I witnessed during our foray to Philadelphia; that Bill was selfish, which caused major problems in their relationship because Bill liked to frequent bath houses. Donovan tearfully recounted how Bill would often disappear for days on end, causing Donovan great angst and worry. I didn't understand it, but he truly loved Bill and was committed to their relationship.
It was fall of 1993 when Donovan approached me at work and asked me to assist him with some disability paperwork. As I read through the documentation, it was apparent that he was going to need a great deal of leave to address the illness with which he had been diagnosed.
It was then that I started to notice that he wasn't coming to work as consistently as he had been. He also seemed more tired and stressed than usual. It wasn't until I noticed large dark patches of Kaposi's Sarcoma on his head and face, that I finally asked him if he was sick. He told me that he was HIV+ and that Bill had given it to him.
Published: 03 March 2012 (Page 3 of 3)
I was incensed at the unfairness of his situation, and my protective instincts flared and I wanted to beat Bill down. Yet, Donovan still had compassion for him, and made excuses for him, and believed that at least they could live with the disease together and take care of each other. Based upon what I had witnessed, I knew this was a fantasy, so I asked him if his family would be available to provide him with support.
As is typical, he told me that his family had cut all ties with him when he "came out." He was distraught when he told me, because his mother was still alive and though a grown man, he yearned for her comforting words and embrace but she had refused to accept his sexuality and turned her back on him.
I remember hugging him as he cried on my shoulder in despair, because his trust in the partner he lived with and intended to spend the rest of his life with, had been so cruelly and viciously repaid with a death sentence. Unlike today where HIV is a manageable, chronic condition that is treatable like any other disease, in the late 80's and early 90's to learn that one was HIV+ basically meant you were destined to die horribly and soon.
I also recall feeling slightly uncomfortable as his tears soaked through my silk blouse to the skin beneath. I didn't know much about the disease at that time, but I was reasonably comfortable couldn't get infected from his tears. But I am human, and I would be lying if I said that I wasn't concerned, it was just that his need for love and human touch triumphed over my usual selfishness.
Although, Donovan revealed to me that he had been diagnosed a year earlier, he wasn't sure how long he had been HIV+. Because of his late diagnosis, his T-Cell count was very low, and his immune system was severely compromised. In conjunction with the stress of Bill refusing to get tested, or even acknowledging that perhaps he was also sick and had given the illness to Donovan; he did not have adequate insurance to cover the end of life stage equipment and medication necessary to keep him comfortable.
I was truly inspired by Donovan's courage and ability to stay positive, joyful and humorous throughout the final days of his life. Before he became totally incapacitated and bedridden, I would stop by to visit at least once a week. Because of my disdain for Bill, I coordinated my visits with his absences from the house; however, toward the end, when Bill disappeared and abandoned Donovan, I tried to go as often as three days a week.
It was fall, and the acorns and piles of wind-blown leaves littered the asphalt parking lot in front of his apartment. I would sit on the edge of his neatly made bed, his body tucked and swaddled in heating blankets to keep him warm. As the machines inflated and deflated, clicked and clanked; we would sit, talk, and laugh as good friends do. I would allow him to reminisce as we watched the soaps, though I remember feeling utterly impotent and insignificant in the face of this great tragedy. My innate sense of justice wanted to rip open his veins and drain the illness from his body, and I wanted to punish Bill for his utter lack of humanity.
Instead, I sat with my friend as he transitioned from this world to the next, alone. It is a singular journey that the young and healthy never consider, but it one we will all travel. I was not with Donovan, that final day when he passed. However, I remember it was a cold, blustery DC Metropolitan day, with an overcast pewter sky and windblown brown and auburn dried leaves twirling in tiny dust devils along the gravel parking lot behind our building. I was at work, when I received a call from his hospice care person, and though I knew it was coming, I was bereft and inconsolable.
The desolation of the days that followed increased with intensity as I interacted with coworkers who could barely muster feigned sympathy for his passing, because he was after all, "nothing but a janitor, who was gay and got what he deserved."
I remember going down to the garage to cry in private; and I did not have the stamina to attend a funeral with family members who couldn't be bothered to be with him in life. Mostly, I didn't go because I wanted to remember him as he was in those last days; happy, smiling and full of grace.
Though his death inspired me to get out of my own dangerous situation, and it probably spared me from exposure to any infection my ex-husband may have contracted; it did nothing to assuage the pain of loss or the pangs of regret. I wished that we could have both been saved the heartache and pain, and remained together to laugh and swap survivor stories. But as the song says, "if wishes were horses, beggars would ride".
Though Donovan's passing was painful and much too soon, though it reminded me of my mortality in ways that I didn't want to think about, our friendship made me a richer, better person because I had the privileged of knowing, loving and helping a beautiful human being. Not a HIV+ person, not a Gay person, not a man, but a loving human being named Donovan Grayson.
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