Two-Way Mirror

"UpSilo4" by DL Pravda

I snap a selfie in the two-way mirror and post it on Instagram. I’m wearing a fake hospital gown, clutching a fake baby, sitting in a fake hospital bed in the basement of a 1970s university building. My fake husband is standing near me, wearing a bright orange beanie and guzzling a soda. Gave birth 9 times today the caption reads.

For the last several hours, I’ve been role-playing a labor and delivery scenario for OB/GYN residents and nurse-midwifery students, part of my work as a medical actor with the University of Minnesota, or as I sometimes tell people, a “professional patient.” As someone with a flair for the dramatic, I relish every minute of it.

Each time over, I hide my right hand under my gown, using it to guide the doll’s head slowly and measuredly through the opening of the birthing simulator, a clunky and rudimentary contraption—think front-facing backpack with a hole at the bottom—that the gown unconvincingly conceals. My left hand grips the hand of the actor playing my husband, with each of his squeezes serving as cues. One squeeze: dial up the moaning; two squeezes: it’s time to crown.

A pair of students crouches between my legs at the foot of the bed, frantically encouraging me to keep pushing while I bear down and let out an intense, guttural grunt. The baby’s head emerges, then its body. They shift their focus to calculating the baby’s Apgar score and soon, a recorded voice pipes in overhead: “Please stop the encounter and exit the room.”

With the students gone, we relax, we giggle, we sip our drinks and do breathing exercises in the 10 minute interval before the next set comes in and we have to start again from the top. On one of these breaks, a faculty member who had been watching from behind the two-way mirror pops in to praise my performance.

“Have you ever given birth before? You’re a natural.”

Internally I do a little hair flip, but I laugh and say no. I’m 26. My life feels weightless; a merry-go-round of wine-fueled nights out, shared apartments, SSRIs, misguided two month flings, joints passed in other people’s cars.

Pregnancy and motherhood are abstract concepts in the back of my mind, things I have plenty of time to think about later; giving birth is a bridge I can cross when I come to it. What I don’t know yet is that this is the closest I’ll ever get.

***

Last June, a week before my 32nd birthday, I was diagnosed with a disease that Google will tell you is terminal. My scrub-clad cardiologist delivered the news as I reclined on a bed in the same-day surgery recovery ward, slurping a chocolate pudding cup, still hazy from the fentanyl and Versed coursing through my veins. He told me the name of the disease and it barely registered. Pulmonary Arterial Hypertension. PAH. He kept talking, saying something about catching it early, something about nitric oxide and calcium channel blockers. His words floated through me, as if my whole body was made of the gauze that was wrapped around my wrist. I waited for a voice from above to tell us we could break character now, a voice that never came.

Moments before, I had been wheeled over on a gurney from the carac cath lab where a team of a dozen doctors and nurses and techs surrounded me in a frenzy like a pit crew while I laid flat on a frigid sterile table, fluorescent lights pulsating, my eyes fixed on the tracks on the ceiling. A car in a garage.

I winced as they inserted flexible tubes into blood vessels in my wrist and forearm, snaking them through into my heart’s chambers to measure pressures in the ventricles and pulmonary artery. Then: a palpable cloud of tension rising through the room, urgent voices, commands volleyed over my body. Even as I teetered on the edge of consciousness, I sensed the atmosphere shift, noted concern on every face.

Back in the recovery room, where I’d spend the next several hours, my cardiologist, Dr. C—who looked like a long-lost Culkin brother—gave me a bare bones explanation of what they had found: the pressure in my pulmonary arteries was way too high, landing me in the “severe” range. This is known as pulmonary hypertension, and it was causing strain on the right side of my heart. It was not until he left the room, and I pulled out my phone and searched the term, that the gravity of this diagnosis started to hit me.

Phrases jumped out at me: “survival rate” “life expectancy” “progressive” “poor prognosis” “often fatal.”

I put my phone down.

If Dr. C had any prior inclination that this was what he suspected they’d find during the cath procedure, he hadn’t let on his suspicion to me.

About a year earlier, I’d first noticed the racing and fluttering heartbeats, the earliest inkling that something was wrong. I saw a handful of doctors who didn’t appear overly concerned, but I eventually pushed for a referral to a cardiologist. When I finally saw him, in December, he told me my heart was normal and that I should consider seeing a psychiatrist for my anxiety. It was true that I had anxiety, but it seemed to me that even the most well-adjusted person would develop some degree of anxiety when confronted with mysterious cardiac symptoms. I didn’t understand why doctors saw anxiety primarily as a cause, not a symptom, of a problem.

Things continued to get worse—gradually, and then suddenly. By May, I couldn’t walk ten paces from my bedroom to my bathroom without feeling like I was going to collapse. I had to pause every other step while climbing stairs, gasping for air along the way. Rolling over in bed left me winded; crushing chest pressure accompanied every sudden movement. I knew I needed a second opinion, but I’d been putting it off for fear of being told, again, that it was all in my head.

Around the same time, I’d put in my notice to move out of the apartment I’d spent the last three years in, partly because I was going through an inconveniently-timed breakup, but mostly because I could no longer climb the 26 stairs in my building. I’d had hopes of finding a first-floor apartment to move into, and fell in love with one I looked at—a gorgeous unit with a south facing sunroom and Craftsman features—but the owner gave it to another applicant.

I was feeling unmoored; a future I’d dreamt up had dissipated just as quickly and been replaced with a foreboding uncertainty. Discouraged and too fatigued to keep searching, I moved reluctantly back into my childhood home. I didn’t want to admit to myself that I needed my parents’ help, even when my symptoms had become alarmingly debilitating.

When I’d met Dr. C one month earlier, he put me through a gamut of tests, including a cardiac MRI that diagnosed me with pericarditis, an inflammation of the lining of the heart. I was relieved to finally have proof that this wasn’t all in my head, and felt hopeful for a path to recovery. But after a few weeks, I wasn’t improving as much as Dr. C expected on the typical medication regimen, so I went in for an ultrasound of my heart.

That afternoon, he called me and let me know that based on what he’d seen, a slightly enlarged and “sluggish” right ventricle, he wanted to proceed with a left and right heart catheterization procedure the next morning. He explained that this procedure was the definitive way to find out whether I had a more serious and long-term type of pericarditis, one that would require a major open-heart surgery. This prospect alone was terrifying enough that I didn’t even bother to consider what other scary possibilities might emerge when they went digging around in my blood vessels.

A million questions started to swirl in my mind as Dr. C hovered over the edge of my bed in the recovery room. He emphasized how rare my diagnosis was, but was reluctant to answer much else; I’d need to see a specialist. I left the hospital that day with a referral and a vague sense that nothing about my life would ever be the same, a sense that would sharpen in focus over the next several weeks as I learned about what this diagnosis meant.

It would be a couple of weeks before I could get an appointment with the specialist, and during this time I spent hours scouring the internet for any information I could find about the disease.

While the name made it sound like something your lifelong smoker uncle might have, I learned that it is actually most commonly diagnosed in women between the ages of 20 and 60, and its cause is usually unknown. I learned that despite the word “hypertension,” PAH is not related to typical high blood pressure (which I did not have) and is not caused by the lifestyle factors that lead to high blood pressure. A narrowing of the pulmonary arteries, PAH causes the heart to work harder to pump blood to the lungs. Over time, it can lead to right heart failure.

I also learned that “rare” meant the chances of getting it were somewhere between two to eight in a million. While there are treatments to delay the progression, and those treatments have gotten better in recent years, many people who have it ultimately die from it, and others end up needing double lung and heart transplants.

Over the past year, I had talked a lot about things I would do when I get better. Go to Alaska to see the Northern Lights. Take a canoe trip through the Boundary Waters. At some point, the when became an if. If I get better.  And now the if had disappeared entirely; I realized I never would get better, at least not in the way I was before.

When I started to tell people that my diagnosis had a name now, they’d say “thank goodness you finally have an answer.” Or sometimes they’d say “that really sucks and I’m sorry.” I told them not to Google it, but secretly I hoped they would.

I wanted them to know that it wasn’t comforting to have an answer when the answer was this. I wanted to tell them everything I’d learned. I wanted to tell them that if I was alive in 10 years, I’d be considered a long-term survivor. I wanted to tell them I’d now have to follow a strict low sodium diet to avoid fluid retention; giving up my favorite sausage-egg-and-cheese sandwich from the bakery across the street from my old apartment, late night Crunchwraps, charcuterie, pickles on my burger, the ease of eating in restaurants and ordering takeout.

I wanted to tell them that I’d need supplemental oxygen to fly, that I’d never be able to hike in the mountains or travel somewhere without quick access to specialized medical care. It meant the dissipation of my dream to visit my brother in Zurich once I got well. I wanted to tell them that I wouldn’t ever be able to get pregnant, because pregnancy is always life-threatening in someone with PAH. I wanted them to feel my grief for all the futures I was losing, while they expressed gratitude for the present I still had.

***

As medical actors, we repeat the same simulations over and over until we know each talking point by heart, and can rattle off an answer to a student doctor’s question without thinking twice. We know when to pause or hesitate, when to summon a tear for dramatic effect.

In a scenario meant to give students practice delivering serious news, I play Donna Taylor, a character whose three-week history of abdominal pain and bloating turns out to be colon cancer that’s metastasized. She is in the hospital, and the resident doctor is coming in to share the diagnosis. She digests the news. She breaks down. She laments over the trip to Europe that she’ll now have to cancel.

I find my most effective portrayal of a character comes when I can find deep within me a reference point, a way to channel the grief, frustration or anger of the situation being played out. By my mid-twenties, I have had my share of serious health issues—a childhood autoimmune disorder, a fractured spine, chronic migraines, the list goes on—but the idea of receiving a terminal diagnosis is hard to step into. I know the distress and the fear that comes up when your body betrays you, but some part of me still feels invincible; some part of me believes I’ll live forever.

As students come into the room to deliver the news, some stumble through platitudes, as if trying to recall what their notes said about this, while fumbling around the room for a tissue. Others effortlessly exude deep compassion. Many will sit with me silently, experiment with a gentle touch of the arm. They repeat back and validate my feelings, offer words of affirmation while being careful not to impart false hope. All of them avoid the d-word.

When they leave the room, I fill out a standardized checklist on the computer evaluating their communication skills and identifying areas of improvement. In several different categories, I rank them on a scale of one to four. How did this person make me feel as they told me I was dying? Were they empathetic enough? Did they listen well?

At the end of the day, when I’ve run through more repetitions than I can remember, I wipe away the fake tears with a tissue, fold up my gown, grab my friend and whip across the street to our favorite campus taco bar. We sip spicy margaritas and laugh about something our boss said and don’t think for one more minute about dying.

***

I had become accustomed to using Reddit for medical guidance in the year since my symptoms began; when I felt as if there was nobody who understood specifically what I was going through, there was bound to be someone on Reddit who did. After my diagnosis, I made a post on r/PulmonaryHypertension asking for words of advice for someone newly-diagnosed. One user replied that the subreddit was “more dead than Google says we’ll be in 5 to 7 years.”

The commenters encouraged me to join a Facebook group instead, so I did. There, I found an incredibly supportive group of mostly women: the 8-in-a-millions, thrown together by unfortunate circumstances, all a part of a club that none of us asked to join. These women tried to put my mind at ease and quell some of the overwhelming fear of my early days of diagnosis.

They told me stories of running half-marathons and going on cruises and camping trips, of outliving their doctor’s initial life expectancy estimate by five, ten, twenty years. They told me I’d be fine, that the first year is the hardest, but that eventually I’d find the right treatment regimen and adjust to my new normal.

Not every narrative I encountered in this group had a recovery arc, though. Interspersed with the affirmations and success stories, there were posts from grieving husbands announcing their wives’ deaths, detailed accounts of ICU stays and double lung transplants. Sometimes, while searching posts and comments, I would click into the profile of someone in the group, only to see her name prefaced with the word Remembering in small black letters.

With my appointment with the specialist looming in what felt like too distant a future, and my symptoms no less crippling, my anxiety only intensified—anxiety that I now knew was rooted in something real. Every night, I went to sleep praying to a god I wasn’t sure I believed in anymore, praying that I’d wake up the next morning.

When the day of my appointment finally came, my parents drove me to the University of Minnesota campus, the same campus where I’d spent my undergraduate years shuffling between classes, and the latter half of my twenties playing patient. They pushed me through the winding halls and airy waiting rooms in a wheelchair, harsh white sunlight streaming into the glass-walled building towering above the east bank of the Mississippi. My heart was still pumping, but it was too weak to carry my body. I stopped to reflect on the absurdity of all of this: why was I here, at 32, why me, shouldn’t I be the one taking care of them as they get older? By the looks of pity on the passing nurses faces, I knew I was not alone in those thoughts.

In the exam room, I sat wedged between them, breathing rapidly, my mind spinning in every direction as I tried to imagine what serious news the doctor might deliver. Would he tell me I was dying?

After what felt like an eternity, he knocked on the door and entered, a small man in his 70s wearing pastel pants, a bowtie, and a tweed jacket. He had barely finished his words of introduction when I, unable to hide my distress, blurted out: “Am I going to die?”

Without skipping a beat, he quipped back. “I didn’t bring a gun in here with me, did I?”

He promised me that I wouldn’t die on his watch, adding that “if you see my obituary in the paper, then you can start to worry.” Considering his age, I wasn’t particularly comforted by this, but I tried to muster a polite laugh.

I quickly realized this was a doctor who went through medical school long before soft skills like empathy and active listening were incorporated into the curriculum alongside anatomy and pharmacology. Almost every question I had was met with a joke in response. Later, when my visits became more frequent, his unconventional bedside manner would grow on me, and I would come to see glimpses of compassion through his wisecracks. But on the day of that visit, already terrified, his attitude grated on me. Sitting there, I envisioned filling out the checklist, mentally giving him a one in every category.

During that first visit, he told me to stay away from Google and emphasized that the information there was outdated. Treatments had gotten better and the prognosis was not what it once was. Still, he debated whether to admit me to the hospital to expedite initiation of treatment. Otherwise, I would have to wait a couple of weeks for insurance to approve the medications I needed to keep me alive. Because the affiliated hospital had a waiting list for beds to open, he ultimately decided to send me home. Before stepping out of the room, he gave me his personal cell phone number, with instructions to call if things got worse.

Back at home, I tried to distract myself with work and with the novels I was reading. I mindlessly clicked through Instagram stories and saw my peers vacationing in the south of France, wandering the streets of Mexico City, attending outdoor concerts, throwing dinner parties. Pregnancy announcements, weddings, home remodels, promotions. All of it stirred a sadness in me, a feeling of missing out that was only intensified by the uncertainty of what lay ahead of me.

Social media is a highlight reel, I tried to remind myself, while contending with the realization that my own life, confined at the moment to the four walls of my childhood bedroom, didn’t even have a highlight reel. I hadn’t left the house to go anywhere other than medical facilities in at least a month. I rationed my trips to the kitchen so that I wouldn’t have to go up the stairs more than once a day. The biggest decisions I was making were between toast or oatmeal for breakfast. I spent a lot of time staring at the ceiling.

Life was mundane at best, terrifying at worst. About a week after my doctor visit, while working in bed one morning, my resting heart rate went up to 160 and stayed there. I called my doctor who advised me to go to the emergency department.

On arrival, I was swiftly triaged and shuffled through labs, EKG, and x-ray, then instructed to stay in the waiting room while results came in and Cardiology was consulted. As I sat waiting for my name to be called, I gazed up at the lobby TV. A news station was airing an investigative report about medical gaslighting. A woman was being interviewed about her array of strange symptoms that doctors ignored, later found to be something quite serious. Who chose this channel? I marveled at the irony while the past year flashed through my mind: the dozens of doctor visits, the test results that came back normal, “anxiety” printed in big bold letters on my after-visit summaries. And here I was, finally with an explanation, but still begging for a solution.

***

Four first-year medical students surround me, poking and prodding at my body as I lie on my back on an exam room table. I’m teaching them how to conduct “head-to-toe” physical exams, using my body as a live model for them to practice on. I’ve spent the last few weeks getting to know my own body well—where to locate each pulse, how to elicit each reflex—so I can teach it to them.

The reason I was drawn to this work–beyond being an aimless 20-something navigating the gig economy, beyond my penchant for drama–is that I truly believed it to be a valuable way of shaping the interpersonal and clinical skills of the next generation of healthcare providers. In my life thus far, I’d already had too many encounters with doctors and nurses that left a bad taste in my mouth, and I had idealistic visions of a future where patients were always believed and comprehensively cared for. This was my part to play.

The students take turns palpating my spleen and liver, and one gets visibly excited when she feels the liver edge. “Oh my god! I think that was it?” she exclaims, and the other three clamor around as she guides them toward discovering the same thing.

Their hands are hesitant, faces streaked with awe as I help them locate the inguinal lymph nodes, memorize cranial nerve functions and check that each is intact, feel for the thyroid, run through neurological tests named after long-dead men: the Romberg, the Babinski. I teach them to verbalize what they’re doing as they’re doing it, explaining not just the maneuver but the “why” behind it.

In all my years of going to the doctor, I’ve never had one examine me this thoroughly.

***

When my name was finally called, the emergency room physician led me to a set of chairs in a cramped hallway near the nurses’ station. “There are no rooms available, so we’ll just chat right here, if that’s okay,” she told me. Then she told me that the cardiologist on call wanted to admit me. I would stay in the hospital so they could get me hooked up to a heart monitor and start treatment. “I’ll try to find you a bed,” she added. “The cardiologist will be down to see you soon.”

An hour later, on a gurney in that same hallway, I picked at the soggy penne marinara I had ordered off the hospital menu, one of the few choices that fit the cardiac dietary restrictions I was placed on. The cardiologist approached; a tall and attractive blonde woman in her 40s. A boyish-looking resident trailed behind her. She introduced herself as the head of the Advanced Heart Failure team, and I briefly wondered if that meant I had advanced heart failure, but as if reading my mind, she assured me I did not.

Together, they went over the plan, then conducted a brief physical exam, checking for edema and listening to my heart. She moved the cold metal disk of her stethoscope around my chest, pausing in one spot. “Right here. Do you hear that?” she asked the resident. He auscultated the same spot and nodded. When I asked what that was, she told me it was nothing to be concerned about, nothing they didn’t already know about me. I wondered why none of my other doctors had ever mentioned it.

Eventually a room opened up and I was transferred to a real bed and hooked up to a monitor that tracked my heart rate and rhythm, which was still hovering above 100. The team informed me that one of the first line treatments for PAH was sildenafil, commonly known as Viagra, and that I would be taking it three times a day for the rest of my life. As it turns out, it was actually initially developed as a pulmonary hypertension drug and the erectile side effects were discovered in clinical trials, spurring pharmaceutical companies to redirect their target market to maximize profits.

During my hospital stay, my male nurses loved to make jokes about this as they came in to give me a dose. (Later, I’d joke about it too, telling my friends and Twitter followers that “hot girls take Viagra three times a day,” and when I saw an Instagram ad for a brass pill holder keychain engraved with the word Viagra, I hit purchase immediately.)    

Once the medication started working and my heart rate was stable, I was discharged. The weeks that followed were a rollercoaster of reprieve and relapse as my body adjusted to the treatments. I ended up in the emergency room a few more times, unsure if my fast heart rate was a sign of my taking a turn for the worse, or simply a product of my anxiety about having the disease. It turned out to be some of both, which is one of the most challenging parts of being an anxiety-prone person living with a life-threatening heart disease.

As the weeks and months passed, though, I noticed a gradual shift in my symptoms. I was able to walk a half block, then a block, then five blocks. The pills dilated my blood vessels, made my face flush red, but this was a small price to pay for the ability to breathe deeply again. I was responding to treatment. The fear of impending doom started to lift.

Throughout these months, the shame I felt at being in my 30s and reliant on my parents was tempered by the compassion they showed me and the comforts of home: fresh-cooked meals, gardens blooming in the yard, my mother sitting with me on Sunday nights and helping to organize my pills for the week. Once I was well enough, I started taking daily walks around the familiar maple-lined streets of the St. Paul neighborhood I grew up in. Often I would run into neighbors who had known me as a child.

One summer evening, I saw a man whose kids I had gone to school with walking his dog, and we stopped for a chat. One of his daughters, who was a year younger than me, had cystic fibrosis, and had passed away 5 years prior. We talked a bit about her, and I mentioned my own recent diagnosis. He asked me where I was being treated and we compared notes about the hospital that was once her hospital. He gave me a fatherly pep talk and imparted some wisdom about keeping a positive mindset.

As our conversation was coming to an end, his phone began to buzz in his hand. He glanced down at it, then up at me with a bittersweet smile. He told me it was the alarm for his daughter’s meds. After all this time, he’d never taken it off his phone.

At my monthly visits with my specialist, the conversations became lighter and less fraught. My heart was getting stronger, and death didn’t seem to be looming around the corner in the same way. When discussing treatment routes and prospective clinical trial drugs on the horizon, my specialist declared that “I want you to be shot by a jealous wife when you’re 90,” and I laughed; I was beginning to have a spark of hope for a future again.

Still, there were things that weighed on me. I started having recurring dreams that I was pregnant. When I was younger, and I had these dreams, I’d wake up in a panic, sometimes scrambling to take a pregnancy test just to make sure it wasn’t prophetic. Now, I woke up with a sense of grief that was difficult to shake. As if to rub it in, the manufacturer of one of my medications required a test each month to prove that I wasn’t pregnant, and each month, confirming the negative result to the pharmacist over the phone, I felt a little pang.

I’d never had a burning passion for procreation, and by 32 I was already keenly aware that my window of opportunity was not going to stay open forever, but I had always liked knowing that it was a possibility. The topic of fertility came up often in my appointments with my OBGYN since being diagnosed with stage 4 endometriosis at 29. I jokingly referred to my recurring ovarian cysts as “nature’s birth control,” but my doctor assured me that if and when I wanted to actually try for pregnancy, there would be options, things we could do to maximize my chances.

With PAH, it's the disease itself that makes pregnancy risky. The added pressure on the heart can cause life-threatening complications. Someday, emerging treatments might change this, but it was unlikely to happen before my window closed. I was surprised by how devastating it felt to have the option taken away from me, to know my body was incapable of bringing new life to the world, to suffer a loss I wasn’t ready for.

***

For years I put on a mask to talk about the illnesses of others as if they were my own, in clinical terms, following a script. Sometimes emotions would seep in around the edges: a bruise that opened the door to a story of abuse, a request for pills thinly veiling a character’s struggle with addiction. But mostly I followed the formula: chief complaint, onset, intensity, duration, aggravating and alleviating factors.

When I talk now about my own illness, I talk about all of these things, but I’m also learning to talk about what I never could have known back then: that illness is an unfathomable loss, so big it can be incomprehensible to anyone who hasn’t lived through it, and that it is equally a thousand smaller losses that add up to something that can feel insurmountable, patches in a quilt of grief that envelops me and weighs me down.

It can be hard to find redemption in illness, and often I don’t want to even try. I balk at the idea that “what doesn’t kill you makes you stronger,” a theme that often reverberates in the way our culture frames and digests illness narratives. But if there is one thing I’ve found, if not strength, but freedom in, it's detaching from the idea that anything is guaranteed to us in this life. There’s freedom in coming close to death and living to see another day. Surrendering control and living in the moment is unimaginably difficult when the moment is brimming over with physical discomfort and uncertainty. But there’s joy in it, too.

In the early months of my recovery, I returned often to the poem “My first well Day — since many ill” by Emily Dickinson which concludes with the lines:

“My loss, by sickness — Was it Loss?

Or that Ethereal Gain

One earns by measuring the Grave —

Then — measuring the Sun —”

I know that my disease may progress. I don’t know when or how fast. I know my body has already survived so much, and there is an unparalleled beauty in surviving. I see a highlight reel of moments that once may have seemed insignificant, shimmering and tender and entirely mine. I wake each morning and read in bed with hot coffee while the birds chirp outside my window. I walk around my neighborhood, encountering familiar faces and reveling in the vibrancy of trees changing color. My doctor makes a joke, and I shoot one back. When the alarm goes off, I take my pills.

About the author

Rachel Dorn is a writer working in the healthcare field and residing in Saint Paul. She is currently working on a collection of essays that explores the intersection of chronic illness and the complexities of navigating our medical system. You can find her on Twitter at @sharkrado.

About the artist

DL Pravda keeps it together either by jamming distorted reverb juice into his ears or by driving to the country and disappearing into the woodsfarm dimension. Recent photography appears in Santa Clara Review, Trace Fossils Review, and Streetlight Magazine as well as poetry in Blue Collar Review, Roanoke Review, and Spring Hills Literary Magazine. Pravda teaches at Norfolk State University.