Heart Failure...at 29?

An excerpt of "Weightless," Evette Dionne's poignant and ruthlessly honest journey through cultural expectations of size, race, and gender.

Evette Dionne photographed by Brien Howell.

I am in heart failure. It’s a surreal sentence that still gets stuck in my mouth, coating my tongue like a dry scoop of peanut butter. I’ve said the sentence casually on social media and to men I’m getting to know, rebuffing all attempts at sympathy by quickly saying in one way or another, “Don’t worry about me. I’ll be just fine. Take good care of yourself.” My boundless optimism is really a façade, a faux manifestation of the word “fearlessness,” which I tattooed on my right forearm in 2014, after a particularly harrowing depressive episode that I thought would hover over me forever. Though a crinkling smile still crosses my face every day, bringing the round apples of my cheeks almost up to my eyes, and I still edit magazines, go on dates, and grapple with the angst that often accompanies turning thirty, I’m also deeply afraid for the first time in a long time.

If heart failure weren’t enough, I also have stage two pulmonary hypertension, or high blood pressure in the lungs, a rare, progressive lung condition that used to kill people in two years or less. Sometimes, late at night, I comb through the #pulmonaryhypertension hashtag on Instagram. It’s full of people with varying degrees of the condition carrying oxygen tanks or adjusting stomach ports that pump them with medication twenty-four hours a day. There are photos of people in the hospital awaiting double lung transplants and others trying to complete a whirlwind bucket list before they run out of time. I scroll through those pictures as if they’re a crystal ball predicting my inevitable future. Sometimes it sends me into a panic attack. Sometimes it makes me sob uncontrollably. Sometimes it makes me feel grateful that the disease hasn’t advanced that far . . . yet.

I am in heart failure. It’s a surreal sentence that still gets stuck in my mouth, coating my tongue like a dry scoop of peanut butter.

Fear is my normal condition. I fear that my heart will suddenly stop before I’ve even had the chance to fully live. I fear that I’ll encounter an adverse side effect to the myriad medications I’m taking, and that it will kill me before my heart does. I fear that I’ll leave behind the people who need me most—my parents, my grandparents, my brother, my aunts, uncles, and cousins, and, most important, my nieces, who still perceive me as their confidante, the one person who holds their childhood secrets close to the vest.

Now that I have less control of my body than I’ve ever had before and medications are the sole determinants of my longevity, writing this book makes perfect sense. I’ve been thinking and worrying about my fat body long before my heart failure diagnosis, so I hope my personal stories might light a pathway for other fat people to reclaim their bodies. I’m also reminded in this moment that bodies are resilient. At night, when I’m browsing that hashtag on Instagram or when I lose my breath as I ascend a staircase, I think, “My body has betrayed me,” but it’s not a sentiment I actually believe. It’s borne from frustration, not a baked-in belief. My body has not betrayed me; it has continued rebounding against all odds. It’s a body that others map their expectations on, but it has never let me down, and for this I am grateful. I need those reminders, especially in dark, quiet moments when I hesitate to go to sleep because I’m afraid that I won’t wake up. Though I can’t control if or when I’ll recover, I can still dictate how I feel about my body and encourage others to build that level of sacred relationship with their own bodies.

I’d originally gone to the doctor because I felt an unreasonable amount of fullness in my chest—a surefire sign that I was either in the throes of an asthma attack or about to have one. I assumed the doctor would give me a professional-grade albuterol treatment, which would ease the inflammation in my lungs so that I would be able to breathe better. An asthma treatment was given, but the fullness in my chest remained. A look of concern crossed the doctor’s face as she listened to my lungs and heart with her stethoscope. “You might have a blood clot that is traveling from your legs into your lung,” she explained with as much calmness as she could muster. Though I felt panic in that moment—alone in a small room with bland posters on the wall—I tried to convey a mature calmness. “That’s treatable, right?” I remember asking. “Is that something we can catch and cure?” The doctor nodded affirmatively, but didn’t return the fake, I’m-too-blessed-to-be-stressed smile that I flashed in her direction.

Fear is my normal condition. I fear that my heart will suddenly stop before I’ve even had the chance to fully live. I fear that I’ll encounter an adverse side effect to the myriad medications I’m taking, and that it will kill me before my heart does.

When I left the doctor’s office hours later, I’d taken a test that eliminated a blood clot as the reason for the chest fullness, but I did have a referral for an echocardiogram (an ultrasound of the heart) and explicit instructions to stay as calm and relaxed as possible so as not to overexert the heart. Within a week, I was gasping for air as that same doctor told me that I was in danger: my heart muscle seemed to be overworking because my heart function was considerably lower than it should be, and I needed to schedule an emergency appointment with a cardiologist. Time was as still as a frozen lake in that moment.

“You are in heart failure” is still one of the scariest sentences I’ve ever heard; it bowled me over in my new cardiologist’s office as she explained that my heart was only working at about 16 percent of its capacity, and there was no guarantee that it would ever return to the healthy 80 to 85 percent range, even if I followed all the recommendations to the letter. I left her office with reddened eyes, two prescriptions, and a treatment plan that could turn it around or change nothing at all. The idea that my heart isn’t pumping blood as well as it should pangs me, even after my cardiologist has explained the condition to me countless times, I’ve shared my diagnosis with friends and relatives, and I’ve started a rigorous regimen that limits me to 72 ounces of liquid and 2,000 milligrams of sodium per day. There’s a new normal associated with my medical condition: I eat lunch at 1 p.m., a snack at 4 p.m., and dinner at 7:30 p.m. to curb the side effects of the multiple pills I take three times a day, and I have to step on a scale each morning to measure how much fluid has pooled in my body overnight. If I gain more than three pounds in a day, then it’s back to urgent care for more poking, prodding, and diagnostic tests.

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The cocktail of medications I’ve been prescribed is designed to remove excess fluid from my body, keep the vessels in my lungs flexible and open, slow down my heart’s beat and regulate it, and lower my blood pressure so no part of my cardiovascular system is overworking. My blood pressure is so low, in fact, that my body can no longer regulate its own temperature: I’m always cold, so cold that it feels as if I’ve been touching snow without gloves on. I also can’t get too hot—super-hot bubble baths are a no-go—or I develop nausea and feel as if I’m going to pass out. My feet, legs, and fingers sometimes cramp so badly that yellow mustard—the worst condiment of all time (argue with your momma)—has permanent placement in my fridge. I need to swallow a spoonful of it every time my foot cramps become unbearable. I drink a glass of orange juice every morning, take two prescription-strength potassium pills every afternoon and a B12 pill at night, and eat at least one banana every day, and it’s still not enough to ward off the cramping. These are just the prices my body pays for being resilient.

My parents have always been a salvation for me. They realized early on that I was bigger than my classmates, but they didn’t panic, force me into dieting, or give me a sense, as in other autobiographical fat girl stories, that I was undeserving of starting my life until I was smaller.

Heart failure has stolen a lot from me: Walking a block makes me feel as if I’ve run a marathon. My fingers swell so badly that I sometimes can’t wear the glitzy rings that have long been staples in my wardrobe. And I spend hours in doctors’ offices, having blood drawn, taking diagnostic tests, and figuring out if my medicines are working or making my heart—and possibly my kidneys—worse. I can’t work as much as I used to. I can’t even enjoy my typical meal at Chipotle, which has too much salt for my sodium restrictions. (This is the real tragedy of it all.) The very energy that once convinced me that I could write two books, work full-time, and still sleep eight hours each night is gone. There are days when it is difficult to muster the strength to get out of bed, brush my teeth, and get dressed. But as much as these chronic conditions have drained me, they have also helped me reframe what’s important—advocating for myself and for my needs with doctors, romantic partners, bosses, coworkers, and every person and system I interact with. Heart failure has also reminded me that I’m not alone in this fight to assert my agency. I’ve never been in it alone.

My parents have always been a salvation for me. They realized early on that I was bigger than my classmates, but they didn’t panic, force me into dieting, or give me a sense, as in other autobiographical fat girl stories, that I was undeserving of starting my life until I was smaller. Of course, there were boys who saw a girl who’d gotten her first period at ten and thought I was adult enough to be groped and subjected to sexist mistreatment. There were snide comments from fellow kids about my fat cheeks. But my parents consistently, incessantly, and without apology told me that I was worthy. When my teachers and classmates bombarded me with fatphobia, I felt their love for me in the comfortable confines of our three-bedroom apartment. It came through my mother wrapping me in her arm as we sat on the couch, rubbing my head in a rhythm from front to back, and assuring me without saying a word. It was a bubble of love—their attempt to arm me with the protection I needed to navigate a world hell-bent on my destruction.

My mother, who has a complicated relationship with her own plus-size body, understood better than anyone what it’s like to navigate a thin-obsessed world. Though she’s embarked on diet after diet, she tried to prevent me from falling into a dieting spiral. My father seemingly knew he’d be unable to protect me after I’d left our family’s sky-blue station wagon every morning, so he used our twenty-minute morning drives to try to create an invisible force field around me, an impenetrable shell that would shelter me from the cruelty that’s as common among children as chicken pox. As he drove me toward the taunting that surely awaited me, tired after working a twelve-hour overnight shift, he’d allow me to read to him. It didn’t matter what we read—he would let me choose without pushback. Sometimes, it was a Nancy Drew or Hardy Boys mystery; other times it was the latest edition of The Baby-Sitters Club or Sweet Valley High.

As much as these chronic conditions have drained me, they have also helped me reframe what’s important—advocating for myself and for my needs with doctors, romantic partners, bosses, coworkers, and every person and system I interact with.

He always listened attentively, never once revealing how tired he was. After reading to him for fifteen minutes, I’d pepper him with questions to ensure he’d been paying attention. I was nothing if not a schoolteacher in the making: “What was the villain’s name? What was the biggest lesson you learned?”

He could’ve (and probably should’ve) told me to be quieter, but instead, he was attentive, answering every question and reminding me to use a bookmark so we could pick up where we left off.

Beyond indulging me, he was also inadvertently giving me access to my voice. In his presence and under his guiding hand, I wasn’t subjected to the whims of a world obsessed with thinness. I was powerful. What I read and said meant something. My father unknowingly tapped into something important that has guided me through fatphobic, racist, and sexist discrimination, harassment, mental illness, college, grad school, and now my career: no matter the size of my body, nothing—including heart failure—can hinder me from living a full and complete life. Today, my parents’ quiet and calming presence at doctors’ offices, in the home we share, and hovering above me as I lie in bed, trying desperately to gather the energy to start the day, gives me an unexplainable peace. No matter what comes next on my health journey, I know I have the support I need to survive.

From Weightless: Making Space for my Resilient Body and Soul by Evette Dionne. Copyright © 2022 by Evette Dionne. Excerpted by permission of Ecco, an imprint of HarperCollins Publishers.