We settle into our strange new life together as autumn approaches. Using some contacts I’ve gained at my endless examinations, I’m able to help Liberty organize an internship at the American Lung Association. Meanwhile, I prepare to restart conservatory. Peabody is very different from Liszt. In Budapest, I was the star pupil in Éva’s studio of seven singers. Here, each instructor manages thirty to forty voice students depending on the week, and they don’t have much time to play favorites. Not wanting to label myself as damaged goods, I decide not to tell anyone at conservatory about my PH. But lately it’s getting harder to pretend nothing’s wrong. Hoping to avoid more invasive interventions, I’ve been taking an experimental oral drug since my diagnosis. Initially, I improve, but I feel myself slipping into exhaustion much more quickly in recent weeks—relying on Liberty to cook and run errands because I can’t muster the energy to do so myself. Some nights, I wake up to her sitting by my bed, just watching to make sure I’m still breathing.
Every few weeks, I go to the medical school for a walk test. There are no machines. No sensors. Just an empty hallway that I pace up and down for six minutes. Afterward, my nurse, Tracy, takes my vital signs. Simple. Yet every time I come back, the hallway seems to get longer. By December of 2004, I can barely make it halfway down before needing to rest. Dr. Girgis orders a heart catheterization—a routine surgery used to measure internal pressures that most PH patients undergo once or twice a year. The surgeon and nurses make small talk with me as she snakes a catheter through a vein in my neck down to my heart; then she turns toward the monitor and goes silent. My numbers are supposed to be somewhere between 15 and 25; the monitor reads 146. I turn my head just in time to see the color drain from Tracy’s face.
As far as my treatment goes, it’s time to pull out the big guns. Flolan, an intravenous vasodilator, is the invasive intervention I’ve been avoiding. But I’ve run out of effective alternatives. The medication will be continuously injected directly into my veins via a pump about as large as a VHS tape, which I’ll have to carry with me at all times for the rest of my life with PH. I get the device implanted just before winter break. I walk out of the hospital with a narrow tube snaking out of the bottom of my shirt and connecting me to my new pump, stored in my purse and surrounded by ice packs. My life has changed forever.
My pump and the medication it dispenses immediately become my de facto first priority. Other girls my age have boyfriends. I have Flolan. Two pieces of advice for anyone thinking of starting a relationship with Flolan: know that it’s high maintenance and hope it’s long term. Refrigerated, each dose of the medication lasts for one day. Once twenty-four hours have passed, it has to be immediately replaced with a new cartridge of freshly prepped medicine. Flolan is a dangerous cocktail to mix; if my prep surface isn’t properly sanitized, I risk contracting a deadly infection from pathogens in my tubing. If I don’t pop every bubble in the solution, air will pump into my veins and I’ll suffer an aneurysm. If I’m late replacing the cartridge, the flow of medicine will be disrupted, my pulmonary veins will constrict, and I’ll die. My morbid countdown clock restarts at 3:00 p.m. every day. No matter where I am or what I’m doing, I have to change my medicine by then if I want to stay alive.
Unlike me, Flolan is harshly regimented. If you mess up, there are no second chances. It’s shipped to our Baltimore apartment in giant boxes—thirty doses of medication plus the needles, syringes, tubing, saline, alcohol, and ice packs required to prepare it (if there’s one thing Flolan and I have in common, it’s a passion for accessories). We stash kits of it across the Eastern Seaboard—at Tomicah’s house; my grandparents’; Kimber’s apartment in New York; the car; my purse—just in case.
One day, Liberty and I get caught in bad traffic going to visit Kimber. Once the clock hits 2:30, we exit at the first opportunity. I saturate every inch of a grimy gas station sink with rubbing alcohol and begin the delicate process of mixing my meds. Liberty stands guard at the door—I’d prefer not to have an unwitting stranger walk in on me mixing drugs in the bathroom of a roadside Sunoco. Casual passersby won’t understand that, unlike other addicts, I’ll literally die if I don’t get my next fix.
Despite its inconveniences, Flolan is—quite literally—a lifesaver. Since using it, my perpetual exhaustion has abated; I can almost function like a regular person. I’m very grateful for this miracle of modern pharmacology, which is a blessing, because there are only two options to stop taking it: die or get a lung transplant. I guess they’re right when they say breaking up is hard to do.
With chemically renewed energy, I throw myself into my studies. Within a few weeks, my performance schedule is full. I’m singing at embassy concerts, with chamber ensembles and orchestras. There’s always a party to attend, and Liberty and I take the town by storm. I start to work as the national spokesperson for the Pulmonary Hypertension Association, raising money for PH research and testifying before Congress. My fellow musicians at Peabody aren’t big consumers of C-SPAN or medical news, so I tell myself that the advocacy work will go unnoticed.
I pick up a couple of unorthodox collaborators along the way—I perform in a rock concert backed up by the US ambassador to Russia on drums and the Hungarian ambassador to the United States on lead guitar. It’s surreal, to say the least. Over the summer, I debut at the Kennedy Center accompanied by the current secretary of state, Condoleezza Rice. Secretary Rice and Didi had become friends while working together on foreign policy issues and she let slip that she moonlights as a concert pianist. Next thing I know, Madame Secretary and I are performing “O mio babbino caro” together for a packed house.
My career begins to coalesce around these types of unexpected opportunities. Research on an obscure Hungarian composer evolves into an invitation to debut at Cleveland’s Severance Hall singing his work. A performance at one foreign embassy leads to invitations to sing at several others, until Embassy Row becomes a circuit unto itself.
Back at school, I see less success. I’m invited to sing the role of Ophelia in the world premiere of Amy Beth Kirsten’s new opera, Ophelia Forever, but going into my second year at Peabody, I’m turned down for a number of other auditions. Eventually, I find out that a recommendation from a teacher states that I “might be the voice of a generation” before outlining, in excruciating detail, the ins and outs of my medical condition and the pump I thought I had hidden so well. Mortified, I’m grateful when a fellowship to study opera in Italy comes through. This will be a chance to start over.
Two days after I arrive in Florence, I meet a famous old conductor. He immediately takes a shine to me and casts me in a slew of roles for upcoming festivals. After my summer in Italy, a Fulbright fellowship takes me back to Budapest and, soon, I have invitations to sing everywhere from Berlin to Beijing. The coming months are a series of dreamlike scenes—late nights in the Tuscan countryside and lazy mornings at the Ritz-Carlton. Majestic soirees in Budapest concert halls and audiences with Danish royalty. I travel with a rotating cast of family characters, each one hand-delivering a new box of Flolan a week or so before my previous stash runs out. More often than not, though, we’re enjoying each other’s company instead of handling medical crises.
I’m no opera star—I haven’t sung in any major festivals and, some nights, I only have bit parts. But when I’m cast as Queen of the Fairies or I perform as the understudy for Violetta, I feel invincible. This is how a real career starts, I assure myself. Gradually, my inner optimist grows even more bullish than usual, and I begin to see my ten-year path to becoming a Great Artist unfolding graciously before me. I’m so busy living that I almost forget my brief life expectancy is quickly winding down—from five years to four to three.
“What is that?”
I’m practicing with a new accompanist in Florence, but he seems to be having trouble focusing on our score. I ask him if everything’s all right, but he waves away my question and we continue with the measure.
“There! That sound!” he interrupts again. I sh
ake my head, incredulous, but this time he doesn’t continue playing. We spend the next minute in silence as he sits at the piano bench, hunched forward in concentration.
“Again! You must have heard it that time—a mechanical little schoowap. Where the hell is it coming from?!”
My stomach drops. This time, I did hear the sound, and I know exactly where it’s coming from. It’s the action from my Flolan pump, which is currently attached to my inner thigh by an Ace bandage and a particularly snug pair of Spanx. The only person who knows about my pump out here is a costume designer I’ve sworn to secrecy. The European opera scene is small, talkative, and already competitive enough without directors worrying you might keel over during opening night. Up until now, no one has suspected anything.
I quickly change the subject, asking if we can just continue with the aria. I try to sing or talk over the periodic whirring of my pump, but the pianist stays on edge for the rest of our rehearsal. I guess it’s time to find a new accompanist.
Typically gregarious, PH dictates my newfound antisociability. People have germs and germs are the enemy: if I get sick (well, sicker than I already am), I can’t sing. I try to limit my interactions with others to rehearsals and voice lessons. Most of my socializing happens with dead composers and voices on the other end of a telephone. I spend a small mint on calling cards—talking to Mom and Dad every day and updating my doctors about my health. On Sundays, I go to church. Otherwise, I’m content enough to spend evenings with my piano and whatever score I’m working on at the moment.
Needless to say, I don’t go on many dates. For all the passionate affairs I’ve acted out onstage, I lack much firsthand experience of romance. My only real relationships have been with my family, my faith, and my music (oh, and, of course, Flolan). Being wed to your craft is a little easier when the prospect of a relationship with another person is so imposing. In Mormonism, marriage is the endgame; for single members of the church, even the most casual dates are underpinned by the thought that the schlub sitting across from you could be the person with whom you spend not just the rest of your life, but your afterlife too.
But I guess dating is always difficult . . . Mom and Dad’s courtship certainly was. Didi was already convinced that no one could ever be worthy of Mom—his beloved oldest daughter. Certainly not an Aspen ski bum with a lightly checkered past. But Dad straightened out and he and Mom eloped to the Mormon temple outside of Washington, DC, to be married for time and all eternity—all before he graduated from college. Sure, things were complicated. But they made it work because they loved each other.
Just like I love opera. I already know I’ll never have kids. Even if I were to adopt, the physical limitations of PH would make raising a family nearly impossible. And eternal families—parents and children joined by a bond unbroken by death itself—are a central tenet of the church’s theology. Their importance is reemphasized every single week in sermons and Sunday school, so it’s pretty safe to assume that certain childlessness will be a deal breaker for most good Mormon boys. No. As far as I’m concerned, opera is my boyfriend and we have a very fulfilling romance. Like any good relationship, I make sacrifices for my art. But only because it’s what I want to do.
On the other hand, I make sacrifices for my illness because it’s what I have to do. The same isn’t true of the people supporting me. Nothing forces them to upend their lives for me. It’s hard to even think about all the things they do for me; it stays at the very back of my mind, like a sin left unatoned. Every time Mom flies across the country to attend a doctor’s appointment with me, I know she leaves Dad and four kids at home alone—sometimes for weeks at a time if I’m undergoing a serious procedure. Liberty transferred her entire life to Baltimore on my account; when I get sick just before the holidays, fifteen-year-old Mercina and sixteen-year-old Shiloh do the same thing—leaving Denver to join me in Budapest so that I don’t spend Christmas alone in a strange hospital. My family has always tried to make the best out of a bad situation, but I can’t help but feel they do too much. And while I know there’s genuine love and concern at the surface and at the heart of all this service, I fear somewhere in between, resentment has begun to bubble. Even worse, I’m afraid it’s mutual. I never asked to be sick—maybe I need their help, but I certainly don’t want it. I can’t help but long for the times when I was the person helping all of them. When I was on my way to greatness without a dozen-and-a-half people questioning the wisdom of my every decision and the direction of my every cough.
Didi met my great-grandmother, Mary Tillemann, when he was eight years old. In 1936, he strode into the Tillemann jewelry shop announcing that he intended to purchase a birthday present for his dear mother. Mary was so charmed that she made him promise to visit again (next time with his mother) before sending the little boy home with a gift far exceeding his meager budget. By the time Didi was nine, the two mothers had colluded to betroth him to Mimo, Mary’s six-year-old daughter. It would be a happy union for everyone involved. Then the Third Reich came to Hungary. By wits, luck, and his light complexion, Didi survived horrors—all while working to supply the Hungarian resistance and keeping up with his academic studies. But the war left him orphaned and separated from Mimo. Turning a B’nai B’rith scholarship at the University of Washington into a path to citizenship, Didi soon brought Mimo to join him in America. In 1950, they were married under a chuppah in a friend’s backyard in Los Angeles. In the fifty-seven years since, Didi has built an academic career, a political legacy, and a massive network. He is respected, feared, and adored by untold numbers—most of all by us, his family.
In the three years since my diagnosis, my grandfather Didi has become a champion of PH. While his chairmanship of the House Foreign Affairs Committee and the Human Rights Caucus has little to do with the disease, Didi has used his platform and his seniority to make incredible strides raising awareness and furthering research efforts to find a cure for PH. Didi and I have always had a close relationship—he says I’m the only person who has never been afraid of him. But Didi has seventeen other grandchildren to attend to, so his grandfatherly attentions have often been divided. That all changed when I got PH. After my diagnosis, I quickly became the object of his laser focus. At times, it can be overwhelming to have such a powerful advocate, but I know all Didi wants is for me to live a long, fulfilling life. He knows he can’t single-handedly ensure its length, but he certainly tries his darnedest. I call to speak to him and Mimo a couple of times each week, updating them on my progress with the Fulbright and the status of my health.
More and more often though, Didi isn’t up to talking. It’s certainly uncharacteristic, but I figure he must be busy with his responsibilities on the committee. I only really start to worry when my grandmother lets drop that his appetite has been waning—in nearly sixty years of eating Mimo’s cooking, that’s never happened before. Soon enough, we all know something is seriously wrong.
In December 2007, Didi is diagnosed with stage 4 esophageal cancer. Didi has faced Nazis and Communists. He’s spent his career fighting corporate greed, ruthless dictators, and opposition politicians. But cancer is his most vicious opponent by far. Mom flies to DC from Denver on Christmas Day to be with him. I hear the exhaustion in her and Mimo’s voices whenever I call; I know it’s less from the physical demands of care than the emotional strain of witnessing their hero meet an adversary who might finally best him. The only times Didi speaks to me on the phone, an uncharacteristic waver in his still-forceful voice, is to forbid me from leaving my fellowship to see him. Disobeying Didi is never done lightly, so not wanting to upset him, I stay in Hungary. At the end of January, he finally relents and agrees to let me book a ticket back to DC. On February 11, two days before my flight leaves, Mom calls my apartment, crying.
Once again, my family gathers underneath the grand cupola of a national capitol—this time in Washington—to honor Didi, but the mood is somber instead of celebratory. Eulogies are offered by luminaries from UN Secretary General
Ban Ki-moon to Elie Wiesel to Joe Biden. Bono, international rock star extraordinaire, leads the assembled mourners in a rendition of “All You Need Is Love”—sung to Mimo for Valentine’s Day. But not even a personal serenade by an international superstar could distract her from her sweetheart’s absence from her side.
Following the funeral, an emptiness settles into Mimo and Didi’s Capitol Hill apartment. We all know someone has to be there for Mimo. I volunteer. This is my chance to be there for someone who needs me instead of vice versa. I extend my leave of absence from my fellowship and move into Mimo’s guest bedroom.
When a leading man as monumental as Didi takes his final bow, it’s hard to figure out how best to fill the void left on the stage of our lives. We settle on distraction. With just the two of us in the house, Mimo has become keenly aware of my singleness—a reality she either never noticed or never cared about before. All of a sudden, though, she staunchly opposes my resolved old maidenhood. After some debate—I’m no more comfortable with the idea of a romantic relationship than I’ve ever been—I finally relent in an attempt to maintain our battered mutual peace of mind. I start going on dates. Lots of dates. While I used to be politely disinterested, I now accept invitations from the boys I meet at church or events on Capitol Hill. After each outing, I come home and gab with Mimo about where we went, what I ate, how he dressed. I scroll through my dates’ Facebook photos with her and together we cast judgment (she particularly favors high foreheads like Didi had, deeming them the conclusive mark of a true intellectual). It’s entertaining in a sense, but hollow. I know I have no future with any of these men.
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