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A poet reflects on HIV, addiction and the death of her nephew.
Hidden beneath his tongue, in the incongruent wave of his dark hair, along the edges of crescent shaped nails. He curled the mystery of who he was tightly in his palms and in the half-moon curve of his smile. He shared himself only with others who, like him, were masters of secrecy and struggled with addiction.
Even as I write this, I can’t share his name.
My nephew, 38, had two constant, trusted confidants — heroin needles and coke lines — both tell no tales. There is a code amongst those struggling with addiction, “Keep your life to yourself and I will keep mine to myself.” More than anything, his death starkly stated this code. He died alone in a hotel room — quietly in his sleep. All of his beautifully kept secrets, tended to like rare trees in an arboretum — those went with him.
Except his HIV status. That secret escaped his control in death.
I learned of his HIV diagnosis from his sister as his funeral was being planned. Navigating Boston traffic, I was lamenting not having spoken to him in years and wondered if he knew he was loved. She assured me he knew he was loved, but it was hard for him to place it in the context of his daily life. He struggled with self-love. She, in her grief, consoled me by stating he knew I was struggling with depression and understood my long periods of silence. In a soft, steady voice she confided that her brother, my nephew, had been diagnosed four years before his death as being HIV positive.
My breath gathered in my belly and nested there, leaving a dry hollow in my throat. My niece, on the other line in another city, remained silent before continuing to speak. She was allowing me the impact of learning this and waiting for the inevitable question everyone seems to ask of those with the virus, “How did he become infected?”
I have always reviled that question, and yet there it was on the tip of my tongue and tumbling over my teeth into her ear. It is a question that simultaneously provides shelter and reveals human frailty, an unbearable vulnerability/truth. We have all been unsafe. We want to pluck ourselves from danger, and in asking how one got the virus we find a bastard, blasphemous safety.
She confided his drug use had become suddenly worse — he relapsed with a vengeance and, in a rare moment of openness, he shared that he felt he would never marry, never be loved and believed family, if we knew, would not want him around our children, our food. He believed he would never have children. He believed the world and all of its joys had been closed to him. In his sharing, he revealed that his lifelong battle with drugs had led him to seek shelter in drugs and secrecy.
My nephew’s body had slowly given under the pressures of drug use. His kidneys were below functioning at 40 percent, he suffered with diabetes and had his first heart attack before he was 32. His pain was constant as the result of diabetic neuropathy. Diabetic neuropathies are nerve-damaging disorders associated with diabetes. These neuropathies result in relentless pain that can push a person into hopelessness and despair. The hope he had for recovery was dimmed by ignorance of his health.
He heard HIV and then he figuratively went deaf and mute. His ears closed to possibility and his lips did not communicate what he needed. My nephew had the challenge of communicating his fears, his needs within the framework of this new and foreign diagnosis. He had a difficult time conceptualizing what it meant to LIVE with the virus — for him, dying of AIDS was easy to conceptualize, too damn easy. Living with the virus, having hope — rising with the sun, daring to not be defined by three letters, HIV — for my nephew, it was almost impossible.
There remain the unrealized possibilities, the proposed solutions blossoming after the fact. If he could have communicated his status, then I could have done this or that. If he could have opened up, then he would have been connected with this group or another. Still, behind the failed possibilities remains the reality that HIV carries for too many — a stigma, a shame, a quieting. A silence that dares not protect and grows fat on the fractures it births.
My niece tells me he sought support groups, but as a straight black man it was hard to find support outside of the gay community. He could not find himself in the HIV community. There was no group he could connect to, at least so he thought. It was explained to him the possibilities of love and marriage had not been extinguished by his HIV diagnosis and he was not alone, there were others like him around the world, millions in fact. But this man, who had spent a lifetime pushing against poverty, racism and socioeconomic barriers, designed specifically for him not to succeed, could not find the light in the darkness.
According to the Centers for Disease Control and Prevention (CDC), African Americans are the racial/ethnic group most affected by HIV in the United States. African Americans have the most severe burden of HIV of all racial/ethnic groups in the United States. Compared with other races and ethnicities, African Americans account for a higher proportion of new HIV diagnoses, those living with HIV, and those ever diagnosed with AIDS. At the end of 2012, an estimated 496,500 African Americans were living with HIV, representing 41 percent of all Americans living with the virus. Of African Americans living with HIV, around 14 percent do not know they have HIV.
The CDC lists socioeconomic factors as contributing to the numbers that are stark and seem to be devoid of hope. My nephew was black and poor — but he was more than a number. Behind the numbers, there is hope. But for one already struggling with addictions, poverty and mental illness, hope and HIV are not words that push off from one another.
He lived quietly, posting on Facebook occasionally, but only childhood photos. My nephew was an urban Peter Pan, the man who never left boyhood. There was a modicum of safety in his childhood. He was a healthy boy, running through the fire hydrant on hot days and peddling furiously on his bicycle on potholed Philadelphia streets. I remember chasing after him, sweaty in the summer, sneakers unlaced, feet pounding the pockmarked sidewalks. We were young, defiant and we ran until we panted like thirsty puppies, quenching our thirst from the garden hose on my grandmother’s front yard. We were invincible and our lives were wide-open books with pages furiously turned by the summer breezes. Then we were immortal and we kept track of time by the yellow flicker of streetlights.
Hope was the universe in our veins — cresting our temples and laying alms at our feet. That was before we grew to be silent and ashamed.
At his funeral, I lay my head on his chest and ran my fingers through those dark, thick curls — unraveling secrets and catching them in my palms. I kissed him and asked him to return. I needed to kiss this sleeping boy/man and hug him. In death, I held him as I never held him and later my family laughed, he would have mocked my sentimentality as being over the top, they nervously joked, as we picked over an after funeral dinner of tasteless candied yams and dry baked chicken.
But I knew then what perhaps they would never know. I know his secret and in my kiss I wanted to banish it, take its life.
But have I?
I carry the secret now. It is not mine to share. It was never for me to know. But secrets can only live for so long in one mouth. My niece’s tongue and gums grew weary of the weight. So now I write, already weary in the three months since his death, with his secret and shame. I can’t even share the name of the beautiful man that lived quietly with mysteries tangled in his dark curls and in the curve of his smile.
Joyce Angela Jellison is an author, a poet and a spoken word artist. She is also a former journalist and holds a Juris Doctor degree. To read an article she wrote for POZ in 2000, click here.
Read more articles from POZ, here.
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