by Mirjana Jojic, PSY-3
Grand Prize Winner 2013 Gerald F. Berlin Creative Writing Award
In college I worked the exit at BJ’s Wholesale Club, checking receipts for incorrectly scanned lounge chairs or missed puppy chow bags. I wore an ID badge, and although customers rarely used my name, they often commented on it. “Were your parents hippies?” they’d ask, bewildered by the audacity. “Nope, European,” I’d respond, which scarcely satisfied them. One teenager thought it was a prank and ribbed his friend in the elbow, exclaiming, “Good one!” I wasn’t surprised – I had been preparing for this since kindergarten. Every time a substitute teacher would roll call, my classmates took the time to meticulously – and incorrectly – pronounce my name until he/she would blush, doubtful…yet, could it be? I eventually started calculating when my name would be called and intercepting my colleagues, sparing the teacher and myself undue embarrassment.
I was a professional pronouncer by the time I started medical school. “The j’s sound like y’s.” “Add an ‘a’ to the end.” “Think meerkat.” (This worked best right after the show Meerkat Manor hit the scene.) I soared through my rotations on the wings of my slightly more manageable first name, momentarily forgetting its resemblance to a street drug. And then I became a doctor.
Every physician, unless they’re blessed with the surname Smith or Jones, can relate to returning a page and pausing for a moment because you’re not sure if the nurse is asking for you, or if you intercepted an encrypted military transmission. It’s inevitable when you’re a foreigner in a career where everyone but your mother (and even that takes considerable convincing) calls you Doctor insert-your-hieroglyphic-last-name, but I felt like I was taking the brunt of the beating. I initially struggled to correct it, shorten it (‘Dr. J’), repeat it, and finally, after a pharmacist jovially called me requesting “Dr. HoHick,” I started to ignore it. It was at that point, six months into my intern year, that I met Ms. D.
Just shy of 50, Ms. D had been diagnosed with Friedrich’s Ataxia (FA) in her early 20’s. A debilitating autosomal-recessive disorder, FA is defined by a progressive demyelination of neurons, originating in the spinal cord and spreading to the peripheral nerves. The disease begins with lower-extremity weakness and frequent falls, and within 5-10 years of the diagnosis, patients are wheelchair-bound. Over time they lose strength in their upper and lower extremities. Basic activities of daily living, such as eating or holding a remote control, become unbearable. Curvature of the spine and scoliosis are common, resulting in painful deformities and necessitating surgical interventions and chronic opioids. Cognition is generally preserved, and average age of survival is 35 years, although women fare better than men.
Ms. D was a textbook case and presented to the emergency room with severe constipation secondary to high doses of opiates. I had treated constipation before, and felt confident that I would be able to handle the case despite the complicating diagnosis. I quickly scanned her chart and, just as I was about to go meet her, I caught sight of one more symptom – slurred speech due to denervated vocal muscles. Suddenly, I was struck by an image of M. Noirtier de Villefort from The Count of Monte Cristo, described by Alexandre Dumas as the “corpse with living eyes,” sitting in his arm chair, silently seething with secrets and desires. Although M. Noirtier had locked-in syndrome, I imagined Ms. D in a parallel position, her paralysis masking the bustle in her brain. I felt similarly stunned, unsure of how I would be able to communicate with her beyond blinks. Then I saw her.
She was in her electric wheelchair, parked in the center of the room, an ominous black presence in the sterile, white space. She resembled a queen, perched on a metal throne of buttons and knobs, towering over the cot, her head held high by support pillows. Her eyes were fixed on a laptop carefully positioned on her legs, and it was not until I knocked on the door that she looked up. She gazed fiercely at me, unexpected after what I had just learned about her condition. “Hi Ms. D., I’m Dr. Jojic,” I said, and watched as she silently mouthed the words, then with what appeared to be a force mustered from her toes to her lips, took a deep breath and squeaked, “Ayeech.” Her voice was a soft, stuttered staccato; intonation and prosody were inconsequential because she spoke a language of her own, ebbing and flowing at the mercy of her vocal vibrations. “Almost. You can call me Dr. J,” I reflexively apologized. But she again mouthed the words, inhaled, and repeated “Oooooeech,” stumbling over the transition from ‘o’ to ‘j’ and turning maroon in the process.
Our initial interview lasted over two hours. I concentrated on simplifying my questions, churning them over in my head for succinctness, rephrasing often, and cringing whenever I had to ask an open-ended question. Her exertion was equally evident; after each question she would sit up slightly, wedge her clenched fists in the sides of her wheelchair, take a deep breath, and start strong before trailing into a wavering whisper and gasping into her pillows. If she wanted to stress a word, it would often come out sounding loud and out of place, the sheer amount of air required to overcome her weakened vocal chords rendering her breathless. We were equally determined to understand one another, and numerous times I had to push my pangs of guilt aside to ask her to repeat or rephrase things. I could tell she was frustrated by her shallow breaths and faltering voice, unable to keep pace with her mind, but each time she would inhale and begin again. My attending entered halfway through the interview, and both she and Ms. D were grateful when I intercepted questions to summarize what I already knew. I stayed long after my attending left, until both Ms. D and I were exhausted, but triumphant.
After that first grueling interview, I worried about how I would have time to see Ms. D on work rounds, and decided to see her first thing next morning. She was in bed, her wheelchair hovering nearby, laptop talking from between her legs. I immediately recognized Paulo Coelho’s The Alchemist when I heard the name Santiago. I had not even had a chance to say ‘Hello’ when she took a deep breath and exclaimed “Dr. eeeeeoooiiiiitch, is that right?” “Almost,” I said, chuckling at her excitement. “No, tell me how,” she demanded, unexpectedly yelling ‘No,’ and huffing to finish. We spent the next few minutes on my name. After every attempt, she would eye me suspiciously, daring me to lie if she hadn’t said it well; I didn’t, and we pressed on. Before I knew it, rounds were about to start and I left, promising to return later in the day.
After that morning I developed a system for visiting Ms. D. where I stopped by after rounds to check-in and ensure she understood our plans for the day, and returned every night after I finalized my notes and tucked in my other patients. She was often asleep, spent after dinner, her laptop a fixture beside her, but she never failed to open her eyes when I entered. She would greet me with a crooked smile, the result of peripheral nerve damage, and we would usually practice pronouncing my name for several minutes before moving on to her pain. It was constant, with minor fluctuations, and I learned to assess its severity by whether she would mute her laptop when I came in. Ms. D relished adventure stories and discovered audio books after she became too weak to flip pages; lifting her arm and scrolling to ‘Stop’ meant a good day – bad days meant it was my turn. On the rare occasions when she did not immediately stir with my footsteps, too exhausted or engrossed, I would sit on the radiator beside her, cocooned in the heat of Santiago’s desert oasis. We would listen quietly, momentarily disconnected from our individual struggles, woven together by the tale of personal exploration and perseverance. On those evenings she did not mention her pain.
We met twice a day for three weeks, and finally, Ms. D was well enough to go home. By this time I had mastered her language and was serving as an interpreter not only for my attending and resident, but also for nursing and staff, who would page me whenever they were boggled by her requests. On her last day in the hospital, my attending and resident made sure I would be available when they went to see Ms. D so I could review the discharge plans with her and decipher any questions she might have. That afternoon, the three of us made the trek to her room. I led us inside and found her propped up in her electric wheelchair, her usual layers of hospital gowns and linens folded neatly on her bed, swapped for a Red Sox sweatshirt and jeans. Her laptop was perched on the bedside table, and she painstakingly reached to mute it as we entered the room – a gesture I knew meant she was ready. I usually began the conversation, but this time my attending took charge and said, “Hi Ms. D. Looks like you’ll be going home today. I hear Dr. Ohick took good care of you.”
The words were hardly formed before Ms. D cracked the biggest, straightest grin I have ever seen and let out a loud, unwavering, undiluted guffaw. The three of us jumped, no one registering the joke, while Ms. D shook with laughter, her wheelchair buzzing with excitement. I looked at my attending, whose confused expression mirrored mine, and we waited patiently for an explanation. Ms. D, trembling with the exertion of ecstasy, finally took a deep breath, looked deliberately at my attending, and declared, “Her name is Dr. Jojic.”
I was astonished. I had long ago given up on anyone saying my name correctly, and even if I were determined to dispense my pronunciation pearls, I wouldn’t dare correct a superior. Yet here was Ms. D, a woman for whom every consonant, vowel, syllable, word, and sentence was an individual triumph, schooling my attending. If I had not been so petrified, I might have felt proud. Instead, I swiveled my head toward my attending and was greeted with what seemed to be a gathering of every blood vessel in her body, an army of abashed soldiers forming the front lines across her cheeks. “Oh, I’m sorry, Dr. Yoitch,” she stammered. This time, Ms. D fixed her gaze on me, a content, warm look that bore no likeness to M. Noirtier, but instead shone with Santiago’s determination and defiance, and said, “Almost.”