Harold B. has “outlived the death sentences of the HIV/AIDS “ for over forty-three years. Living in New York City at the time he was initially diagnosed, Harold’s recollections from that time are somber reminders of the utter destruction & despair that ripped through the gay community. As a Black gay man, Harold experienced discrimination and hatred even more deeply. He carries many scars today – physical, emotional, spiritual. There is always more to the story – #UUAND reminds me of that!
Today I celebrate Harold B. I love his strong voice, persistent and unrelenting. He is cautious about the U=U movement, which is relatively new compared to his experiences living with this disease. His opinion of the movement is expressed strongly in his project narrative. We talked more about it afterwards, and he shared these additional thoughts on the movement.
“U=U has a huge following in my view due to the underlying need of people to engage in intimacies and freedom to date with that underlying on going expectation of sensuality and sexuality to occur between acquaintances.
[What is] bizarre to me is the failure of science and medicine peoples to tell with emphasis what is meant by undetectable. It does not mean a cure. Lots of the virus remains in the body, doing its job of killing healthy cells and multiplying itself – the consequences of which will appear in years yet to come in a person’s life.”
When I asked him for a number to use for our hashtags, he resisted! For him, there was more to the story. Putting a number reduces his story to a non-conversation.
So, I listened – and realized that I was trying to force him into a formula – an esthetic in my mind – that served my purposes alone.
I softened and asked him how else we might express this. A “?” in place of a number? or a blank space? He paused and reflected, and replied “dot dot dot AND!”
Letting people know there is (always!) more to the story…
That’s Harold’s message.
With that, I share more of his story in his own words:
Tell us a summary of your story living with HIV/AIDS
I contracted HIV/AIDS in New York City around 1978 and was diagnosed 1983. I had no understanding of what was happening to me or others. We had no identity as a community at that time – only meetings labeled as ‘gay’ or ‘men only.’ My gay Blackness and NYU graduate student identity gave the only comfort I knew as a new arrival from Indiana. Being a rejected gay Christian I still knew to seek the refuge of the church where most Christians saw me as straight until some pried into my being married and/or having children.
I left Indiana because of the racial hatred and physical abuse. Little did I know, the violence that would consume areas of the City as the deaths occurred exponentially like that of today’s COVID19. I knew I had it because I started feeling sick, not being at myself. I was frightened really horrified to be told another man or several men had died.
I don’t recall now many details of my body’s experience. I was happy though I didn’t look like a lot of men who had open sores and visible cancerous growths. The eyes often protruded. Weight loss was grotesque. Vomiting on the street could be the scene. Many would be slumped down in doorways or on steps at the entrance to buildings. There was nowhere to go for medical attention. It was becoming increasingly clear to the public, even the liberal residents of Greenwich Village, that there is a deadly gay disease. The 28th Street Department of Public Health Clinic became the only medical site in the entire City men could go – even us Black and Brown folks – for help. All we knew was we had symptoms.
I know I hurt and had much pain because I was attending classes daily and working at night. Most importantly, I didn’t run from other men’s need for care. Many looked horrible. I didn’t know I did too.
It was difficult to be Black and Gay. Many in my family were biased if not hateful in thought word and deeds. The social milieu of our country was astir with the upheaval the Civil Rights Protest Movement which made me a target for harassment. My soul ached between racism and gayness.
The grotesqueness of our shared appearances of illness, bent forms and irascible coughs became a high sign for “the sickness,” to which it was most often referred to on the street. In fact at that time the streets, preferred gay bars, emergence of bath houses, and discotheques were the primary socializing spots. For me the cruising from afar became a safety armor. Until the Stonewall confrontation with residents in Greenwich Village and the gay crowd at that bar[, where] many had been brutally attacked, there had been no gay community. Sadly and scary for me, many white gay men remained racist. The next evening after the police attack, a host of thousands of men and some women gatheredf at 9th Avenue and Greenwich Avenue in the Village and the “GAY Community” was born.
Over the forty three years I have outlived the death sentences of the HIV/AIDS I have been through so much agony; four times too great for my body and spirit to bear that I experience my last breath and one out of body experience.
I was bent over, here in Indianapolis, about 35 degrees for 12 years when I first arrived back home at my parents home. I was bed ridden and couldn’t walk for two of those years. I couldn’t eat and loss weight. Got down to around 120 pounds. Arthritic pain was on going and torturous. Ultimately I cried out take them, take them.
In 2013 the left hip was completely removed and replaced. Three weeks later in a nursing home house of horrors for a gay Black HIV/AIDS male, my surgical wound became infected in agonizing disbelief and was removed and replaced.
I had to learn to walk all over again.
Then at Christmas that year both my parents had died. The next day my partner of 18 years died while I was burying my mother. I was in surgery on my birthday December 30 and the right hip was fully removed and replaced all due to the suppression of the immune system causing osteoarthritis throughout the body.
By now, I was 68 years of age. Had to learn to walk all over again.
Medications throughout the whole HIV/AIDS saga was just as haphazard and ineffective as those now being presented for the COVID19. I know its next to impossible to believe because I can hardly believed I have had to live through so much agony, hated, and loss.
While I was still recuperating in the nursing home, the social security state office terminated my medicaid and medicare coverage effective within one month. This forced the decision to have the left shoulder also full removed and replaced due to the osteoporosis. Otherwise I could not afford to pay for the urgent surgery my which my body no longer allowed me to do daily living activities.
Had to learn to walk again.
I took care of my partner four years in our home before we learned he was experiencing dementia. He steadily diminished before my very eyes. Oh what these eyes have seen and endured. I had to place my love in that nursing home facility with dementia after I could no longer keep him safe from self harm and danger. He died in 2014 after four years of mistreatment and hateful behavior towards us as a gay interracial couple. The nursing staff and fellow patients in the locked ward were unkind in thought, word and deed even with the anchoring of other professionals treating us and relating to us with the greatest respect for being a homeowner couple 18 years.
We had a terrible time being gay lovers there. But it was our lives and we were going to live them until one or the other died. So we kissed and hugged at every greeting and every ending of each visit daily for four years and we both paid dearly in the social and medical manners by which we were treated. I prepared breakfast and evening meals riding IndyGo back and forth twice daily in a wheelchair to provide real home cooked meals that defied what he was given as food. No way was I accepting him eating institutional foods causing constipation and weight loss.
During those years I witnessed mistreatment of others. Praises and salutes to the physicians, nurses, staff and administrators who were the vanguard of decency, acceptance, protection and humanity which buffered the outrageous ways of the others.
There’s more, much more, I can’t go on now.
What would it mean to you if we ended this HIV epidemic?
The end of the epidemic of HIV personally matters little to me. I cannot live in the society that dismembered my life physically, socially, morally, sexually, spiritually, aesthetically, horribly, permanently – a society that continues to hate my color which is not black or brown only human – an Indiana that ends HIV for its welfare and not for the optimal preciousness for which I believe I live my life for the good of self and others.
Yet HIV will end.
I advocate and give my energy to its end and to the others who around the world give their efforts to end HIV in their societies.
I am at the end of my journey, yet a little while I may live to see its end.
My truth is my collective experience with my fellowman has convinced me we are failing again and in denial about our belief in our humane worth. We seem on our way through another epoch of calamity. I am bold to believe that the washing of the flesh and the soul must take place for a lesson of inclusion to prevail again: to believe we are one.
How many years have you been undetectable?
I have been undetectable only as long as undetectable became the nameplate for less concern for what HIV does living in my body below medicine’s ability to detect it in my blood. That is about 6 years when it first began as a method of determining incident.
Anything else I should know about you?
I am a witness to the parallel truths of the experience of both the HIV epidemic and COVID19 pandemic.
I don’t believe many Americans know or understand HIV and its author, AIDS.
I will continue to advocate for the well being of all human beings and the wondrous process by which and by whom we all are brought and given to one another.
I will condemn those who I believe have harmed and lied to me and my fellow persons.
I will honor and love those who I believe are truthful and humane in the faces of adversity, pain, suffering and death.
I will believe and hope always in human beings capacity to love (and hate).