When my four year old son was diagnosed with AIDS, I learned about secrets.
It was in August 1986, just before his birthday. To the outside world, Zack was a bright, engaging bundle of enthusiasm. But he had been premature, endured many surgeries and crises, almost didn’t make it to his first birthday where, in an oxygen tent in the Pediatric Intensive Care unit, he had his first taste of ice cream.
By three, miraculously, he was able to start pre-school. Zack was the smallest child in the class, and there was the hole in his neck, where the tracheostomy had been removed. The hole needed to be covered with a red engineer bandana before playing in the sandbox. Other families were aware this little boy had some sort of medical history, but, he, himself, was all about playdates, tricycle milestones, mommy-made Halloween kitty-cat costumes, endless drawings of trains. I allowed myself the incredulous and joyous relief that the worst was over.
By the end of the school year, I knew it wasn’t; something was wrong. Mysterious and persistent infections and diarrhea dogged his natural ebullience. As far as a physician relative was concerned, the problem was me. “He’s fine – you worry too much.” When Zack had the operation to close the opening in his neck, the something I knew was wrong appeared in the lab work. Something in his immune system. We were told to bring our not yet four year old in for an AIDS test. His doctors at Cedars-Sinai could not imagine that their medical miracle was infected. They knew it would have to be negative. He was the sick kid who’d come through, the kid whom they’d helped get better.
At 3:00 a.m. I awoke and put it all together: lack of growth, thrush, infections. The transfusions. And I knew: a death sentence. I woke my husband and told him “Zack has AIDS.” He didn’t believe me and went back to sleep.
The morning after the test results confirmed what I knew, I had to host a brunch for beloved friends, including the man for whom Zack was named, who had arrived from overseas. Zack’s doting grandparents were also coming. I could not ruin this special occasion, could not ruin my parent’s joyful reunion with their old friends. I could not say a word. Could not let slip a hint that anything was wrong. That morning was my first experience of having to balance over a widening chasm. Inside my body, I had lost contact with the ground, gravity’s pull was bottomless. I was sinking, as if on an elevator that was dropping too fast, endlessly falling. On the outside, I was smiling, cheerful. I remember the sunlight pouring in the large windows of the living room, reflecting a brilliant dazzle from yellow carpeting onto the white walls, the bright air crystalline, solid … a block of glass about to shatter. It was surreal. Outside: laughter, chamber music, a sound track over colorful fruit salad, sunlight, Zack happily playing with his tiny toy trains on the coffee table, and inside: “None of you know. None of this celebratory joy is real. It’s been decided. He is sentenced to die.”
Why are these memories coming now? It has been more than thirty years since that morning. And with none of these people – my mother, my father, my child – still here, this plague of COVID stubbornly begets memories of the last one. What was once my single hell of loneliness has become a global ordeal.There is a difference: mine was the loneliness of the lie, constantly guarding the secret of hiding a deadly disease from everyone. Today it is the loneliness of separation from others, necessary to avoid the deadly disease.
The feeling of isolation – whether from physical distance or having to hide in plain sight – is familiar to my body; the longing for genuine connection and meaningful touch travels the same neural pathways. The miasma of grief that surrounds us, the pervasive, ongoing sorrow from so many lost lives is the same sorrow. Even if in a different key, it is the same haunting melody of mourning, a call and response sung across time. And the same fear once again infects the public and personal realms of our lives. While I am thankful that, unlike AIDS, those infected with COVID have not been shamed, scorned, feared and ignored, my old anger at that shaming boils up again, incomplete.
Before Zack enrolled in St. Thomas pre-school for his second year, we met with Deborah, the principal. She agreed that Zack should come to school, that we would tell no one, not even his new teacher, Gloria. And that if any of the other families found out and objected, they could come to her. She would deal with them. It was a profoundly courageous act. People at that time were terrified of AIDS and AIDS patients. The science knew better, but most people didn’t, and it was widely believed that the virus could be transmitted through food, mosquito bites, touch, proximity, a hug or kiss, sharing toys. Nurses who had cared for children in our hospital would not go near the same children when they became HIV positive. The food servers left AIDS patients’ trays outside the door. I used to hear the staff at Cedars talking about no longer eating at the “AIDS” place, a lovely diner around the corner owned by a couple of gay men.
I was never afraid of catching AIDS from Zack as I had handled all his bodily fluids over the years, including hemorrhaging blood, and I always tested HIV negative. But to convince parents at his school would have been impossible.
The loneliness was not just in hiding from the fearful ignorance of the outside world. It invaded our family. My husband started his drinking in the afternoons and after 3:00 he was, at his most benign, checked out. He might start a nonsensical argument, or too sloshed to stand, play with Zack on the floor. Sometimes, as the night wore on, he would rage and excoriate me. He was always loving to Zack, but I couldn’t always prevent Zack from hearing as his father verbally lashed his mother. Unable to flee one of his abusive tirades was like being trapped in a diabolical shower stall in a downpour of acid. I often wished – even pretended – that I was a single mother.
When I had told my parents, they were devastated. Zack was their only grandchild, the sun in their firmament. Even though both of them were in poor health, they soldiered on for him in every way they could and did their best to reveal no change in demeanor. But it took its toll. One day, my mother and I were alone in her kitchen and she cried out “You should have just let him die when he was a baby!”. It was a shocking, hideous thing to hear. But I knew what she was really saying was, “I can’t bear this, I can’t bear to lose my beloved grandson. His suffering, your grief, my grief are too much.”
Because of my experiences during Zack’s many years in and out of hospital, I had been active as an advocate and speaker for families with hospitalized children. Doing so with my identity hidden, however, was new. Under an assumed name, in April, 1987 I attended the Surgeon General’s first Pediatric AIDS workshop at Philadelphia Children’s Hospital. I was the only parent at the conference of 150. I traveled there in the futile hope of learning something, anything, or meeting someone who might help save Zack. When interviewed on local news, I requested that they change my face and voice on the outside chance that a station in Los Angeles would pick it up for re-broadcast. It seems hard to imagine, so many years later, why I had to go to such lengths. But in that same year, the Ray family’s three hemophiliac children were banned from school in Florida and then Alabama. They received bomb threats and then their home was burned down. Zack would become a pariah.
Today that fear, anger and violence have surfaced again. Asian-Americans are murdered, objects of attack by people who believe they look like the ones they’ve been told started this pandemic. They have no chance to keep hidden what turns them into targets. No secrets can protect them.
My nervous system remembers the electric charge of that old ferocious protectiveness, always alert to danger. Will Zack be able live his short life as normally as possible? Will this extroverted little boy, who walks up to strangers at the mall to introduce his stuffed panda bear, Bumby, become an object of revulsion? At least, my vigilance in keeping his condition secret could afford some protection.
At St. Thomas pre-school each morning, no one would have guessed, looking at Zack happily clambering up the steps, that he was so sick. That he was dying. You would have to study the slowly deepening skim-milk blue shadows under his eyes, the swollen lymph nodes. “Zack is always so cheerful!” other mothers would exclaim, “Not like my Noah who gets grumpy or doesn’t want to come to school.” Noah’s mother never noticed that my child could no longer run.
But, as I watched him climb those steps with his radiant smile, I saw the guillotine above his head, always there, never knowing when the blade would descend. I had to listen to the chatter of the other parents, about play dates or bedtimes or food fussiness - problems that seemed huge to them but minuscule to me. And I watched and listened to it all from behind an invisible but impenetrable wall that separated my reality from theirs. While they chatted, I smiled back, silently screaming “That beautiful child there, my son whom you think is so good natured, is going to die! Zack is dying and your child will live. And I can’t bear it!”
I wanted to scream, but what I needed - pushed down and away - was to be held and weep, to have my experience reflected and understood. None of it was possible.
The paper issued from the Pediatric AIDS conference stated what I already knew, including that “The psychosocial problems encountered by children with AIDS and the frightening picture it elicits sets this disease apart from every other public health disorder.” It cited the lack of support, the cut off from community and sometimes family. Children’s Hospital of Los Angeles hired a social worker to start a group for parents of HIV positive kids who had received the deadly transfusions. When I met with her, she blithely and cheerily confided in me as her colleague, as if I were her fellow social worker, not a parent drowning in grief. She even shared inappropriate, confidential information about the other group members. It was useless and awful to to be the most knowledgeable and experienced one in the room where I’d come as an anguished parent searching for someone to help me. I went to the first meeting, longing for someplace I didn’t have to keep the secret – I had imagined hugs and tears with other parents who understood. But, as it turned out, mine was the only child with AIDS, the only one who was suffering and dying, the other kids were HIV positive, but thus far did not have AIDS. I was their parent’s worst nightmare: a vision of a possible future they could not and did not want to imagine. Their faces expressed repugnance and shock; they didn’t want to get anywhere near me.
I did tell my two closest friends. One, who lived across LA and had girls, younger than Zack, not usual companions. She managed somehow, in spite of being scared, to bring them to visit and I have never forgotten the depth of that act. The other, a science writer, whose son had been an occasional playmate, wanted to do the right thing, but could not bear to let him come near Zack. So, when she brought him over, he would have to stay back (imagine today’s familiar social distancing, but we are the only ones of whom it is asked), not touch or share chips from the same bowl or, later, sit on Zack’s bed. How could I explain that to Zack? As his symptoms increased, he had learned about the basics of his illness, but I was very careful to never use the word AIDS lest he repeat it. At Zack’s fourth birthday picnic, that friend insisted that Zack should not blow out any candles on his cake. So I bought two cakes and told Zack that the little one, with the candles on it, was his special cake to take home.
I also had to dissemble for Zack, to remain calm and comforting and matter-of-fact about all the procedures, tests, bandages, pain. When I watch videos of us then, I am amazed. Watching me, from the outside, no one would ever know that as I chat, sing, read a story, apply Betadine to the incision in his chest for the central line lV, that I carry the weight of a nausea-inducing cold stone of dread in my gut, drenched in fear, knowing I will lose this little being who means more to me than the entire world. Every muscle and nerve fiber in me fights against the reality that my fierce love, knowledge, intelligence, determination and energy are useless against the inexorable juggernaut of the disease for which there is no treatment, no rescue.
I didn’t pretend everything was fine. I was honest with Zack, even later, about dying. But I never acted frantic or alarmed. Zack needed steadiness, attunement and mirroring, someone to intuit and express for him what he was feeling, to hold his anxiety and fear, the one thing I could do. Somehow I didn’t flinch when he would tell me, “Mama, when I grow up I am going to….”
When I explained his illness I told him that the doctors were looking for the right medicine. He trusted they would find it, as they had so many times in the past. About three days before he died, my facade must have cracked, for he said to me “Take me to Lilliana, [his pediatrician], Mama; she’ll fix me up.” Was he wanting to fix me up, too?
Dissembling for Zack was not difficult, as it flowed naturally from the endless fount of maternal love. But in the outer world, where I needed to turn for support myself, the pretense was agony. I needed someone to hold my fear and grief. There was no one. Mine had to be a secret.
Since those days, there have been studies on secrets and stress hormones – how keeping secrets elevates those chemicals that wreak havoc on the body over time. And there is research about the conflict that occurs, not just in our psyche, but between different areas of the brain. One part needs to protect against danger and another the urge to release the secret, to let go of the fearsome physical tension required to hide and hold it. Which is more dangerous: spilling or disguising? We now know so much more about how conflict in our gray matter affects downstream our chemistry, mood, energy, and health.
I had been inundated with stress hormones, living on adrenaline for years - that was not a new feeling, but the loneliness was. What has only recently been more widely discussed is what keeping a secret does to social relationships, how it destroys our connection with other humans and can cause profound isolation. I wanted my truth known, witnessed, recognized. I needed it. I was desperate for comfort from the other primates in my world. Monkeys and apes spend hours in close contact, grooming each other, increasing calming oxytocin chemicals in their bodies. My entire being was craving those chemicals.
Instead, while I lived with that feeling of endless falling, I compartmentalized, dissembled, pretended, feigned calm. Mostly, I threw my self into a clenched hyperdrive of competency, frantically researching, trying to find any sliver of hope to grasp.
In the past year, I hear from friends who have been unable to be with their loved ones in hospital, even as they die. They receive no embraces at Zoom funerals, they pine for touch. A year of COVID has illuminated our primal need for other humans to touch, to hold, to be close, as never before. Perhaps this is a good thing.
I did my best to ignore and dismiss my needs as there was no place, inside or out, to have them met. Today, digital culture thrives on wants: manufacturing them, feeding them, satisfying them. Captive in the trance of screens, our unmet needs lay buried, too often projected, becoming fuel for more anger and divisiveness.
With constant stimulation, it is harder to pause, be still and listen to small voices inside, to respond without snap-judgment, with tenderness. Plagues bear the inescapable heightened awareness of death, and all the ways for good or ill that awareness unleashes how we treat each other: kinder and more generous to our own, more hostile and aggressive to those outside our tribe. Social media amplifies it all. I wonder how much harder it would have been for me to keep Zack’s secret inside that megaphone? There was no world wide web. Would I have been able to protect him in this time when chiding, exposing (for good or ill), shaming, and much worse, thrive on social media as forms of entertainment?
In summer, Zack was accepted to attend the same kindergarten as his classmates, started by Deborah, our brave principal. But by September of 1987, he was too ill to manage it. His disappointment was great, so I requested a home teacher from the LA school district and told him “If you can’t go to school, then school will come to you.” The one who arrived, who had not been told about AIDS, had no experience or feel for such a seriously ill child. With neither the sensitivity nor skill to adjust her usual methods to his physical incapacity, she made Zack feel inadequate. I sent her away. Then Zack became too sick for me to request a different teacher. But he had learned to read a bit, much to his great delight and my surprise. One day I pretended I was reading aloud the fortune from a cookie, “Your mother loves you very much.” He examined the slip and declared, quite indignantly “That’s not what that says!” He had caught me in a lie for the first time.
At the start of the 1987 holiday season we are at the mall. In the toy store, Zack is seated at the back trying a new computer for kids, the side of his face with the large swollen lymph nodes toward the wall. To any observer he is a cute kid captivated by a new gadget. A local news camera crew arrives and films him for a fluff piece on the latest hot toys. “That is the wrong story!” I want to cry out. “The story here is that this little boy is dying of AIDS. My child might not make it to Christmas to open any toys. And our government is ignoring AIDS, there are no treatments for him, no research for children at all. That is the real story, right here, under your noses.” But I smile and tell them we’ll watch it later.
Wanting him to have any pleasures of childhood the time left would allow, we continued to venture on outings. Decorative band-aids covered the worst of the purple suppurating infection in his neck and cheek, which were by now so swollen and painful that he had to turn his whole body to see to the right. Although five, he was still the size of a three year old, so I easily pushed him in his stroller up the long concrete entrance bridge to the L.A. Zoo in Griffith Park. As we neared the gift shop, Zack began to squeak excitedly, “Mama! Look! Look! The kids from St. Thomas school! Gloria! Gina!”
There, smack in front of us, are his pre-school friends from last semester, by now two sizes larger, led by Gloria, his beloved teacher, and her assistant. Gloria bends down to greet Zack with her usual warmth, as if she doesn’t even notice his swollen cheek. Zack is overjoyed, I am stricken. Seeing these familiar children who will be able to go to school, to grow up, to have lives, is more than I can bear. Death has gotten so much closer since we last saw each other; it is impossible to dissemble. My long cultivated facade is incapable of holding back this much heartache and finally shatters. I cannot stop tears. I cannot let them see. Without words I flee, hiding behind a large nearby post to sob while they are all occupied, until I can patch myself back together.
Later, on our way out, Zack eagerly looks for “the kids from St. Thomas” again, as if they would still be in the same spot.
As he neared the end, Zack needed transfusions. We were shown to the cancer center infusion clinic for children at Cedars-Sinai, where kids would gather around a table of toys and games with each other while the parents hung out in the background. The children and parents assumed tumors and infections, so his swollen cheek did not receive any alarmed glances. But I could not tell any of those parents why Zack needed a transfusion because they would have never let their children get near him. At the clinic, our doctor took me aside in an adjacent room and told me, in business-like manner, that I needed to sign a “DNR.” It was the first time I ever had heard that term, “DNR” for “Do Not Resuscitate” I had no idea what it meant. When she explained, it exploded like a bomb inside me, shrapnel flying into my heart and gut: the confrontation of the reality I’d tried to hold off as long as possible, hoping against hope a medication would be found before it was too late, the secret I had been keeping from myself. When she left the room, I remained alone for several minutes until able to stifle my tears before returning to Zack.
When we returned home, Zack, who only once had allowed himself to express sorrow about not being able be with his friends in kindergarten, said “Well, Mom, now I know what it’s like to be a clinic kid.” It was said with acceptance, soberness, but also a bit of smile, pleasure to have found peers again at last, some fellow monkeys, other sick ones, just like him.
It is two weeks before Zack’s death, my mother is having brain surgery to remove a benign tumor. It is a fiasco, severing nerves to crucial muscles. She can no longer swallow, choking on her own saliva. Once a gourmet cook, her food is now fluid poured into a stomach tube, like the one Zack once had. Zack and I go to visit her when she returns home and I am shocked by her appearance. She looks nothing like herself, one half of her face is immobile and sags, her eyelids can’t close, her lips droop – a scary, melting Salvador Dali mask of a face.
Zack is visibly distressed. He turns away at first, but then slowly walks across the room, around the dining table where she is seated. Head slightly averted, he goes to her, and slips his small hand firmly inside of hers. A five year old, in so much pain of his own, offering the comfort of loving presence. All of us in that room are drifting on our own shards of pain, but in that moment, the jagged flotsam are lashed together into a communal raft.
Quietly, the room fills with presence, with grace. It flows down through Zack’s fingers. No one speaks. The suffering has not disappeared, it is still there, but softened, floating in an invisible but palpable tenderness. Soon I must take Zack home to rest from this last time with his grandma. But for now, in stillness, my mother’s agitation calms, hearts open and blossom, we breathe.
My secret was extinguished with Zack’s last breath, at home, in my arms. I was freed to tell the truth of our story as an advocate, speaker, AIDS activist and educator. The anguish and sorrow of those days have never entirely left; pale and faded, they lie hidden from consciousness as they fold into the present. The love that prompted the secret, however, lives on, ageless and deathless.
My five year old had proffered the presence and comfort I yearned for at the school, at the hospital, the cancer center, the zoo. All human beings are born innately qualified to be grace delivery devices. What ensues to close our hearts, our minds and our hands is an interwoven web of history, family, society, culture, and more, too much for me to untangle – as many reasons as there are billions on our planet.
But now, another pandemic has awakened memories. That long ago moment of love and grace between a dying child and his afflicted grandma is an unbidden tender treasure returning to me – a moment released from time, still potent and luminous. When I remember, I feel the radiance of grace and communion all around me, filling this room, bringing comfort and hope, for myself and for all of us.
Published by The Plentitudes. September 2021.