Cofounder Mary Diggs-Hobson writes about Reginald, HIV Awareness, and Resistance
My Introduction to HIV/AIDS: When I think about my introduction to HIV, it was when I was going through the clinical pastoral education training at Virginia Mason. My first internship as a volunteer chaplain was at Bailey-Boushay House in 1992. I was one of the first, if not the first, African-American chaplains at Bailey-Boushay. I was there with a team of chaplains, each representing different faiths.
I only remember ministering to men, most of whom were white. Prior to that and even during that time, I only heard about HIV/AIDS in the media, and it made you thing it was all happening somewhere else, it was only affecting white gay men, and gradually, we got so see it was broader and deeper than that. So when I got to Bailey-Boushay, I personally saw how devastating the disease was and as I ministered to individuals on a given day, I realized that some would not be there when I returned the next day. This made “live each day as though it was your last” a painful reality for so many. I would sit and listen to various ones stories, my intent was to honor their lives and be in the moment with them, to just listen and allow them to lead me to where they were willing to go. One gentleman would talk about his family and how they were afraid to come visit, they had just cut him off. Another young man in his early 20s who was raised Catholic knew he was going to die and wanted to be baptized. I went around trying to find a Catholic priest or chaplain and he said, “No, I want you to do it.” I said, “I’m not Catholic,” and he said, “Do you know how to baptize?” I said, “Yes,” and he said, “Okay.” So we talked about the unconditional love of Jesus and his total acceptance of a willing heart and I baptized him. His mother was there and his sister and he was so happy, then he said, “I can die now.” It was both an awesome, sad and anxious experience for me. So there were all these stories and I was immersed in learning about HIV/AIDS through the lives of people who were dying from the disease, hearing and seeing it from their perspectives, and they were great teachers.
Resistance: HIV/AIDS stigma in the Black church, among pastors and the larger community was intensely visible as demonstrated by the churches’ absence in providing compassion, support, and comfort. This was the case in most communities of color. The lack of knowledge about HIV/AIDS, resulted fear and fear opened the door to stigma. And that’s how African American Reach and Teach Health Ministry (AARTH) was born, my son, Reginald Diggs, and Dr. Maurice Moses and I saw the need for education, particularly the black faith community. The church is the cornerstone, the place where people have historically gone to seek refuge, care and support. However, for people living with HIV, dying of AIDS, they could neither go to the church, nor would the church come to them.
As we worked to educate, we were not well received, some said, “We’re not interested,” “This doesn’t affect us,” “They’re in their condition because of their sin.” All these cultural and religious beliefs kept so many people from sharing the love of God, which was freely given to them. Jesus didn’t withhold his love from the multitudes that were fed, healing from the leaper or forgiveness from the many who believed in him and yet withheld his love. God does not discriminate: Man does.
Education begins with being open to listen; transformation begins with being open to change: I believe everything happens for a reason and its season. Everything we do in life is interconnected to our past, present and future. I say this because, a few years after my experience at Bailey, my son Reginald was diagnosed with chronic kidney disease, a genetic chronic disorder through father. He was on the list for a kidney transplant, and as he was going through the pre-transplant assessment, he was found to be HIV-positive.
My experience at Bailey-Boushay was my education. It was also my preparation for what would come a few years later as my own son was diagnosed positive. I was so grateful to God for the Bailey experience. I say it was an education because before that experience at Bailey-Boushay, my understanding about HIV was total based on what I had been taught or learned within my social-cultural environments, particularly my training as a minister that caused me to judge others even to the point of discriminating against people and issues that I knew little about. So yes, I thank God for the experience of being able to sit face-to-face with people dying of AIDS, to listen to their stories, to hold their hands, to cry with them and to minister to them. It was an education and transformation that helped prepare me to embrace my son. I needed to go through that.
Love Is Greater: I remember the day my son, Reginald who was also an ordained minister came to the house, saying he had something he wanted to tell me, he wanted me to sit down. He was so nervous. He was almost in tears. I didn’t know what was wrong. He told me that he was HIV-positive, and when he said that, it was like time stood still. The first thing I remember doing was reaching out and hugging him, holding him as tight as I could and we both stood in the living room and cried for a while. He told me it had been several months since he had been diagnosed. When I asked why he took so long to tell me, he said because he thought I wouldn’t love him anymore. That brought another wave of tears because the thought of not loving my child never entered my mind. We talked about how we were going to share it with his wife, children and the rest of the family. It’s said that crises have a way of bring people together, I say its love and compassions because crises come and go but love is constant.
Another tragedy came when he was removed from the kidney transplant list because they weren’t doing transplants for people living with HIV even though doctors considered him to be a healthy HIV patient with an undetectable viral load. He was too early for the era of kidney transplants for HIV patients and too early for the science of undetectable –untransmittable. He began having congestive heart failure that became chronic because of the kidney disease even though on dialysis which weaken his body due to the tremendous wear and tear that dialysis causes. On March 20, 2007 he died in our home but not before doing what he was so good at doing, taking care of other people. He came to our home to sit with his grandmother who was recovering from a stroke and before I left for work he insisted that I needed an extra big hug and kiss, which he so graciously gave to me. It was my last hug from those long arms and kiss that he would always plant on my forehead.
Legacy Is The Results Of A Life Well Lived: My son left a great, great legacy in the lives of people. People leave legacies in buildings and artifacts and other stuff that eventually deteriorates but the greatest legacy anyone can ever leave is their imprint in the life of another person who passes it on to somebody else. And that’s what he did, as he began speaking about HIV, sharing his story and touching people. At 6’9 we called him a gentle giant, God walking cane, that’s who he was. AARTH would not be here today if it were not for him. As his mother, I want to make sure that what he started carries on to help educate people and change lives. To help reduce and eliminate, if possible, the stigma attached to HIV/AIDS and people that are living with HIV.
Originally written for the AIDS Memorial Pathway.