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Chronic Illness, Guest Posts, pandemic

What Doesn’t Kill You Still Sucks: HIV & COVID-19

August 28, 2020
covid

By Martina Clark

The last time I went outside it was March. March 2020, I believe, but who actually knows. Time has become the intellectual equivalent of holding water in your hand.

Like most of us, I’m under ‘stay-at-home’ rules during this pandemic. I live in Brooklyn, NY which has had approximately the same number of cases of COVID-19–and twice as many deaths–as all of Canada.

Like too many of us, I’ve also been under quarantine. It is almost certain that I have contracted COVID-19, although I can’t confirm this with 100% certainty because it is nearly impossible to be tested for the virus. The only viable way to get a test is to go to a hospital. On the off chance I have some other illness with identical symptoms, the last place I want to go is to an Emergency Room filled with people who are already ill. I don’t want to expose myself further. I don’t want to get on public transportation to travel. And I certainly don’t want to add to the burden of overwhelmed health care workers just for a test.

I’m about three weeks into this journey and I count my blessings every day that I’ve had a ‘mild’ case which, from my experience, presented as such:

  1. Fatigue. Extreme fatigue. Early on in this global health crisis, I joked that my ‘quarantine adaptive gene’ was strong because I’m quite happy to stay home and am never bored. But being lazy is not the same as fatigue and this virus made it nearly impossible to get out of bed many days, and the smallest of tasks wore me out. I’m slowly getting back to normal, but I still need more sleep than usual.
  2. Body aches. Again, I’m not a super sporty person, but walking up and down a flight of stairs is normally not a challenge. With this virus, however, one flight of stairs–up or down, not even both directions–felt like I’d done a thousand squats, run a marathon, and been poked with needles all at the same time.
  3. Chest pain. This is the part that lingers but, mercifully, with lessening intensity. In the first week of illness, I felt as if I had claws inside my rib cage. I’ve had bronchitis and I’ve had shingles. This was more painful than both combined. Today, three weeks later, it only feels like a Shrek-sized creature is squeezing my chest. Tightly. It hurts more if I sit too long. It particularly hurts in the morning when I wake up. But it is better. Much better.
  4. Nausea. Motion sickness on steroids. I choose to believe that whatever creature was clawing inside my chest was also making sardine milkshakes for fun. The worst was waking up to the nausea, although going to sleep with it wasn’t much fun either. During the day, it would sometimes abate, but not for long. It also lingers but is much milder than before.
  5. Headaches. I thought I’d been spared the headaches, until I wasn’t. They hit me quickly and like a brick. I’ve only ever had one migraine, but this was reminiscent of that experience, although without the light-sensitivity. Thankfully, those were neither constant nor lingering.
  6. Sore throat. Similarly, I thought I’d missed this symptom, but it joined my COVID entourage in the third week. It is not unbearable, but it is unpleasant. But I can swallow and breathe so I count myself lucky.
  7. Dry cough. The least annoying and, luckily, the least severe. I’ve definitely had worse coughs in my life, but this remains worth noting, as it is a regular reminder that I’m still not over this virus which is still working its way through after three weeks.
  8. Fever. Apparently, I’m a bit cold blooded because my temperature never topped 99º.
  9. Loss of smell or taste. Never happened. The litter box still needs regular cleaning.
  10. Shortness of breath. I count every lucky star in the sky that I never experienced any shortness of breath. My breathing has been shallow, and still is, but I’ve never struggled for air. I am so very lucky.

But this is not my first virus rodeo. The real kicker in this story is that this year marks the fact that I’ve been living with HIV for half my life, 28 years to be exact. I sincerely believed I’d served my time with life-threatening viruses but, apparently, the universe thought otherwise. I followed the guidelines, socially distanced, washed my hands, sanitized surfaces, and used face coverings before they were cool, but I still got exposed.

Most likely I was at higher risk because I have HIV. On the other hand, I’m wondering if I managed to avoid a worse case because I already take antiretroviral medications for HIV. I don’t know, nobody does. My doctor said that they are designing trials to study COVID-19 in people with HIV so perhaps they’ll be able to, one day, find out. I will gladly volunteer to be studied, as I have with WIHS, a natural history study of women living with HIV for the past 25+ years. My nephew calls me a ‘living resource’ which makes me proud and gives my survival that much more purpose.

Last week my doctor told me I was cleared to go outside, like actually outdoors, but I haven’t yet. Each day I look out the window and think, maybe tomorrow. I have amazing neighbors who shop for me when needed.

I have an extraordinary crew of siblings and niblings who check on me, send fruit baskets and cards, and offer to do grocery runs on my behalf and then drop and dash, leaving the goods at my doorstep.

My partner, by chance, was away visiting family–and is now stuck in another state–so I have not had the added burden of worrying about putting him at risk during my quarantine. Thanks to FaceTime we’re connected several times a day so although I am alone physically, I am far from lonely. It may sound strange, but I am grateful he is not in New York right now to experience this catastrophic chaos or the incessant wailing of ambulance sirens.

Friends check on me, my doctor checks on me, family check on me, and my beautiful cat, Sangha, reminds me that she is still in charge and needs more snacks. She snuggles with me and provides feline contact. She’s a tiny warm body, but she still counts.

And, surprisingly, (or maybe not) I feel far less alone than I did when coping with my diagnosis for HIV. We don’t know much about COVID-19, but this pandemic has hit like a tsunami. The numbers are staggering and horrific, but I know I am–tragically–not alone. 

With HIV, however, I’d never seen another woman with HIV–that I knew of–and so I felt I was on my own. I wasn’t, but that was how it felt. Today we are building on the experience and knowledge borne from the response to HIV and AIDS. While it is a reminder that we didn’t act quickly enough in the 1980s and 1990s to that pandemic, it is, at the same time, gratifying to know that all of the work that has been done by activists and scientists, and others, has not been for naught.

I’m so blessed that my story continues to transition to a happy ending, yet so very sad not everyone else is as lucky. My heart goes out to all who have lost loved ones to COVID-19, as well as to HIV and AIDS and all of the other awful fatal causes. Stay home if you can. Stay safe as best you can and know that you are not alone.

Martina Clark teaches writing for CUNY, but previously worked for more than 20 years as an HIV educator for the United Nations system, notably for UNAIDS, UNICEF, and UN Peacekeeping. She holds a BA in International Relations and an MFA in Creative Writing and Literature. Martina lives in Brooklyn, NY, but will forever be a Californian.

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Guest Posts, Self Image

Don’t be a Baby – Lessons in a Roy DeCarava Photo

April 8, 2020
decarva

By Trish Cantillon

Labor Day Weekend 1979 before we started ninth grade, my best friend Mery and I went to my family’s vacation home in Newport Beach. Since my parents’ separation it was where my dad spent most of his time, and by extension, my time with him. I assumed that since I was fourteen, I would be afforded some independence. I believed I’d outgrown the obligation to keep him company while he sunbathed on the front patio glistening with cocoa butter, a vodka cocktail always at arm’s reach. My plan was to spend those days laying out at lifeguard station fifteen, with afternoon bike rides down the boardwalk to the Fun Zone for Balboa Bars. We’d endure dinner with my dad, and whatever drunk personality he embodied, because his barbecued chicken was delicious. After dinner, we’d disappear upstairs to talk about boys and how great high school was going to be. This was my expectation.

Late Saturday morning, as we finished up bowls of cereal, Mery and I made our plans. My dad sat on a barstool at the counter: newspaper, coffee and vodka screwdriver in front of him. “I’m out of vodka. I’m going to need to go to the store before you head out,” he said, without looking up. His arm was in a sling from a shoulder injury and he wasn’t supposed to drive, though he seemed to pick and choose when he followed that rule. I was unsure what this had to do with us until he stood up, slipped his wallet into the pocket of his trunks and plucked the car keys from the dish next to the phone. “Come on, you’re going to drive me to Balboa Market,” he said.

“What? I can’t drive! I don’t even have my permit,” I replied, certain that once he realized that he’d back off.

“Oh, it’s fine. It’s just a few blocks. Come on,” he insisted. His tone got sharper. I was not in the habit of talking back, especially when he had been drinking, but this felt like a legitimate place to speak up.

“I’m not driving you to the store,” my voice quaked.

“Don’t be a baby,” he said. Me being a ‘baby” was an idea often directed at me, either in a lighthearted way, like when he’d sing, Yes, sir, that’s my baby on our bike rides, or, in this case, with anger and disappointment. It always made me feel small.

“No. Please don’t make me. I don’t want to.” He was silent, then looked at Mery.

“You wanna drive?” he asked. Mery looked at me and shrugged, as if to say, if you’re not going to, I will.

“Sure,” she answered.

“Atta girl,” my dad replied. I was dumbfounded. My grand gesture undermined in an instant. Mery didn’t see him as a bully trying to get his way. She hadn’t lived with that behavior her whole life. For her it was something cool; an opportunity to break the rules and have fun. I felt the heat rise inside me with nowhere to go but smiled as he handed her the keys. I followed them out the open front door.

Mery looked confident as she climbed into my dad’s loaner, a red Ford Granada. The jealous part of me was glad she wasn’t getting to drive his Mercedes 450SL. In abbreviated stops and starts, she backed the car out and pointed it in the direction of Balboa Market. From the sidewalk, I watched the surreal sight unfold slowly, like the final scene in a movie. Everything about it unrecognizable. My best friend behind the wheel of a strange car with my dad riding shotgun on an errand to buy vodka. I felt empty and deserted. I wandered into the house, unsure of what to do with myself. As the minutes ticked by, I began to question why I was so worked up about this in the first place. What’s your problem? It’s no big deal! You’re being a baby! I grabbed my beach bag, tossed in the Bain de Soleil, two cans of Tab, Seventeen Magazine and waited for them to return. Eager to pretend the whole thing never happened.

***

The tears came suddenly and completely. Before I was even aware, they were running down the sides of my cheeks. My husband Quinton and I drifted through the Museum of Modern Art that spring afternoon in the mid-nineties and happened upon the Roy DeCarava exhibit. I shuffled, along with the other patrons from one image to the next and came upon Graduation 1949. When I saw it, I was overcome with a sadness that’s hard to articulate. In Hyperallergic, Colony Little describes DeCarava’s work this way, “He transforms otherwise mundane moments into intriguing narratives with beguiling characters, extracting drama like no other.” The sadness I felt was familiar; an echo and I could instantly envision the life of this girl at this moment.

On a day she thought would be free from disappointment, she put on a happy face when things didn’t turn out as she hoped. She walked alone to her own graduation, through a decaying Harlem neighborhood and an empty lot strewn with trash. She gathered the sides of her beautiful white dress into her hands and lifted the hem so it wouldn’t drag. Everything she reasonably expected for the day had disappeared; except her fancy clothes and accoutrements. She would look the part, even if she didn’t feel it.

Graduation, 1949 exposed an interior life I had long kept at bay with a smiling face and cheerful demeanor. The physical representation of the young girl alone spoke to a deep abiding loneliness. I grew up in a large family and found myself most comfortable amidst the attendant noise and chaos that accompanied that life. I loved falling asleep listening to my brother’s music down the hall and my sister’s hairdryer in the bathroom. However, because I am the youngest by seven years, I often found myself alone. In those moments when life was quiet, I was consumed with a melancholy I could not name and didn’t understand. Distracting myself with elaborate imaginative play, TV and food, I felt a little less blue.

When I was ten new neighbors moved in next door. It was a Friday afternoon and a last-minute change in plans meant I would not have the standard-issue divorced kid weekend with my dad. My mom had a date so I would stay home with the housekeeper who spoke little English. I had the house, and, most importantly, the kitchen to myself. A few days earlier I had talked my mom into letting me buy a fancy Bundt cake mix I’d seen advertised on TV. Because we weren’t the type of family that baked cakes and had them around our own house, I had to have a reason to bake it and a somewhere for it to go. I told her I thought it would be nice to take to the new family next door.

With the family room TV on in the background, I put all my baking supplies on the counter: cake mix, egg, oil and water. I put an apron on over my t-shirt and shorts and when I was ready to begin preparing the cake, I silently called “action” on the imaginary TV show I was starring in. I carefully walked through each step of the recipe explaining the process and offering my valuable tips for the make-believe audience at home. When the cake was finished, I drizzled the packaged icing over the top (the whole reason to buy this cake mix), saved some for myself for later, and proudly displayed the finished product, with great personality and flair, to an invisible camera. I then walked it to the neighbor’s house and rang the bell. A petite brunette woman opened the door looking surprised to see a chubby blonde ten-year-old stranger holding a cake.

“I wanted to give you this to welcome you to the neighborhood,” I offered the plate to her.

“Oh, well, that’s very nice,” she replied, taking it from my hands, ‘Thank you.”

“You’re welcome. It’s kind of a neighborhood tradition,” I said, puzzled by how quickly the lie flew out of my mouth.

“Hope you like it. Bye.” I turned and stepped off her porch.

Back at home, I polished off the leftover batter that clung to the sides of the bowl and the beaters. I fixed myself a boiled hot dog and large bowl of buttered popcorn for dinner, then settled in for a night of television, interrupted only by a move from the den to my room upstairs. Tucked in bed with the portable black and white TV perched on the end of my desk so I could still see it while lying down, I watched The Rockford Files and waited for sleep to take over. Sometime in the middle of the night the white noise, or the National Anthem that preceded it, woke me up. The TV station’s final sign off for their broadcast day brought with it a profound sense of dread and flickers of panic. I was all alone. No one or no thing left to keep me company.

***

Aside from what was obvious in the light, the darkness and shadows in Graduation, 1949 said plenty to me about a literal childhood fear of the dark and an adult fear of the unknown. In Reading the Shadows-The Photography of Roy DeCarava, Ruth Wallen maintains, “The shadows house the riches as well as the dangers. DeCarava’s persistent focus on life in the shadows demands that they be read in a new way, as fertile ground full of possibilities.”

My mom was thirty-nine when I was born in 1965, which, then, was considered late. I was the fifth child who came seven years after the fourth. Growing up I was conscious of the fact that she was older and quickly attached myself to a fear of her death. In its early state, it was born from panic that if something happened to her, I’d have to live with my dad. After he died when I was fifteen it was simply the prospect of losing her that was devastating. Then, as I got older, it became more acute. I’d fret if she didn’t answer the phone or if I got a busy signal for more than an hour. I monitored every sniffle or cough that lingered. I read obituaries to check the average age of the old people that were dying. I didn’t want to think about life without her, or what it would feel like, so I tried to manage what I could not control.

She was a life-long smoker of unfiltered Pall Mall reds. She had a glass of wine and a cocktail every night and considered her vanilla ice cream a good source of calcium. She did not look after her health but managed to appear healthy. From 1978 to 2003 her only visits to a doctor were via the emergency room for a twisted ankle, a broken wrist and finally a broken pelvis. The extended gap in her health care was precipitated in 1978 by an irregular brain scan that doctors incorrectly presumed was a tumor. From that point she adopted the philosophy that doctors make you sick. By 2003 and the fractured pelvis, some legitimate, long-ignored, health issues were unmasked. She spent eight weeks in the hospital and rehab with a few touch and go all-nighters in the emergency room. In the darkest moments, I tried to talk myself into being okay with the fact it might be her time, but quietly sobbed at the thought. On top of knowing I would grieve losing her, I wasn’t sure how I would get through it.

Mother-daughter relationships are complicated by nature and ours was no different. Its complexities, however, were not typical. I never sassed her, talked back, or crossed her. Her emotional support was the only thing I felt I could trust and rely on as a young overweight girl with an alcoholic dad, who just wanted to feel good about herself and fit in. And she relied on me as a companion and ally, her number one booster and cheerleader. For her, my being “the baby” made her believe she appeared young to her peers, even after she had a handful of grandchildren. When she lied about my age to an old friend we ran into, she told me “They don’t want to know how old you are, it will make them feel old.” But an identity of “the baby” made me believe, by its definition, that I was not capable as an adult. This idea seeped into my fear of her death. Could I handle it? Or would I be an inconsolable mess?

In 2012, after several years of declining health, and several remarkable rebounds, my mom let us know that she was ready to not be here anymore.

“I want to be knocked out,” she said. Sitting up in her bed at the assisted living home she’d been in for a couple years, sipping the Bloody Mary my sister had fixed for her.

“You mean, like go to sleep and not wake up?” I asked.

“Yes,” she answered. Her mind was sharp, but her body was frail and, quite literally, shutting down. Less than twenty-four hours later, after the first dose of morphine had calmed her breathing and her nerves, my brothers and sisters and I gathered in her room. We’d been told she’d get a dose of morphine every four hours. The hospice nurse would be back in a day to check on her. I stood near the doorway and observed the scene for a moment and then felt compelled to go sit on the bed next to her. I rubbed her hand, remembering how much I loved the liver spots I thought were freckles as a kid. I could see and feel that she was slipping away, life draining from her body. It was not terrifying. It was not beautiful. It was a somber experience punctuated with inexplicable odd, humorous moments and a peacefulness that’s hard to describe. I felt no fear.

I realized, not long after, I had been present with her when she found out my dad died, when she broke her pelvis in 2003, when she fractured her back in 2010 and finally on the day she died. I had been moving from light to shadow and back to light endlessly but needed to fully experience the thing I feared most to appreciate what was possible in those shadows.

It’s been over twenty years since I first experienced Graduation 1949, it still evokes the same deep melancholy from the first time, when I may have believed I conjured an imaginary life for this young girl on her graduation day, but I what I really did was ascribe my own to her.

Los Angeles based writer and native Angeleno, Trish Cantillon has published personal essays on The Fix, Refinery 29’s “Take Back the Beach,” The Refresh, Storgy, Brain Child Magazine Blog and Ravishly. Her fiction has appeared in Gold Man Review and Berkeley Fiction Review.   She works for Dream Foundation, the first and only national organization providing end-of-life dreams to terminally ill adults. 

 

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