Managing a long-distance relationship is kind of like leaving dough to rise: there’s potential for something great, but if left unattended for too long, it can lead to a sticky mess. Every month, Yoni and I alternate visits, shuttling back and forth between Chicago and DC. It’s maddening, exciting, and exhausting. I can’t avoid the fact that Yoni is a complicating factor in an already impossibly complicated life.
By September 2009, my countdown clock has wound all the way down. Doctors almost never tell patients how long they have left, because it varies. Life expectancies are culled from averages, not scientifically laid out, patient by patient. Nonetheless, I’m on the tail end of the typical expectation for someone with PH. I’m still here, as alive as I’ve ever been. But at twenty-six years of age, I can’t help but feel that I’m living on borrowed time.
Yoni and I have been together for a year, but that’s about to change. As I drive to BWI to pick him up from the airport, I wonder how we fell in love in the first place. It’s not that I don’t love Yoni anymore. I love him very much. But I need to focus right now more than ever. I have to make the most of every moment I have left. And that means focusing on my first love: music. When we break up, Yoni will find someone lovely. She’ll do things that I can’t or don’t or won’t. She’ll be able to have his babies and make his parents happy. Yoni will be a wonderful father . . . I won’t get over him easily, but I’ll manage. Rounding the bend toward the Arrivals terminal, I’ve made my decision. I feel good. Except for my legs. There’s something funny about my legs.
Yoni’s waiting on the curb. He gives me a kiss and we’re off to lunch. As we make small talk on the way to the café, I go over a rough draft of a speech in my head: It’s been a wonderful year, Yoni. I have truly learned so much from our time together. But at this moment in my life, I must make a choice: to love a man, or love art. I’m afraid you already know how I must answer. Yes, dearest. As much as it pains me to say it—seriously, though, what’s up with my legs right now?
I look down. My wide-legged trousers are stretched taut across my calves like leggings. Pulling over, I shimmy up a pant leg to reveal my lower extremities have morphed into those of an albino pachyderm. This is not good.
Edema, swelling in the limbs, cankles—all telltale signs of heart failure. For me, a little edema isn’t unusual. But not like this. I feel like I’m wearing three pairs of wet wool socks underneath my skin. I switch seats with Yoni and he drives me straight to the ER. I guess my speech will have to wait.
Visiting the hospital isn’t abnormal for me. Between bronchitis, pneumonia, heart catheterizations, or other complications from care, I usually end up in-patient at least three or four times a year. Be it in Budapest or Baltimore, the ER is always complicated. I’ve waited as long as ten hours to see a doctor, all while hanging out in one of the germiest environments in existence. As we pull up to the entrance, I mention Mom’s uncanny ability to cut through red tape. Yoni furrows his brow—“Why don’t we call her?” He heads inside, phone glued to his ear, while I hang back in the car.
The car windows magnify the heat of the Indian summer’s noonday sun. Thoughts of love and cankles swirl through my mind as my extremities expand even further in the heat. Fifteen minutes tick past on the clock, but it feels like hours. Yoni emerges from the hospital pushing a wheelchair.
“Your mom is unreal,” he boasts, opening my door and helping me into the chair. He rolls me to the admissions desk, passes me the phone, and Mom’s on the other end. “Charity, don’t say anything. I’ve been talking to the nurse—”
“Thanks, Mom. Do—”
“Charity, honey, I love you, but please don’t interrupt me. I’m in control. I know what I’m doing. Just give me to the nurse.” I obediently hand the phone to the nurse who’s just appeared, as if summoned by Mom’s voice. She nods emphatically as she chats with Mom and takes my vitals. After hanging up the phone and asking the routine questions, the nurse takes my hand and stares kindly into my eyes—“Honey, we’re all praying for you.”
Through charm and sheer force of will, Mom has parted the sea of medical bureaucracy and just like that, the great white doors of emergency medicine open graciously to receive me. On the other side, a pair of police officers stand outside a flimsy pastel curtain while a gin-soaked man with a scraggly blond beard leers at me from the next bed over. A nurse hands me a neatly folded paper “gown.” It’s not quite Versace, but it does the job. She yanks my curtain closed and I change as Yoni steps out to park the car.
Pain-fueled moans join a chorus of beeps and buzzers, all underscored by the percussive expletives of the drunkard on the other side of the curtain. It sounds like an avant-garde production of Lucia di Lammermoor. Peeping through my curtain to look for Yoni, I instead see my neighbor—or rather, his bare behind—wandering down the hall a few feet away from me. As if on cue, he turns, scowls at me, then vomits and poops on the floor, thus completing the grotesque mise-en-scène.
This is going to be an interesting visit.
I call Liberty. She’s finishing up her senior year of college just up the street at Johns Hopkins University. Once classes are done, she promises to come see me. Both of us know there’s no need to rush. Liberty has memorized all my hospital routines. She arrives, handing Yoni and me Chipotle burritos. Ravenous, I unwrap mine and pause. Ooph. That looks like my ankles right now. (Really, the resemblance is uncanny.) I bury my face in it anyway. On a normal day, this behavior would have been reckless. The salt in one Chipotle burrito would be enough to send me to the ER if I weren’t already there. But I’ll soon receive high-dosage diuretics to drain all of the excess fluid from my body and I can afford to binge. A nurse enters and inserts an IV. Flushing cold saline through my veins, she hangs a fast drip of Lasix—a common diuretic—and my deflation commences.
There’s no way to tell time in the ER. No wall clock, windows, or television to mark the passing seconds. Our phones ran out of battery a while ago. Other than the occasional discharge or new admission, little changes. Time is a construct created by healthy people. I’ve peed buckets by now and my ankles are almost back to normal. Discharge must be imminent. We say goodbye to Liberty and plan to meet her for lunch the next afternoon.
Soon after, the nurse enters my room and informs me that the managing physician wants to formally admit me to the hospital. Around midnight, we move to an official hospital room. After a visit from a nurse, a tech, and a doctor, Yoni pulls up a couple of chairs and we settle in for the night.
Morning arrives and I wonder why I’m still here. My legs are back to normal. I should be able to go home. As I contemplate my situation, a small woman with a puff of grayish brown hair, big eyes, a colorful caftan, and a wide smile enters holding a large box with an inflatable mattress. It’s my grandmother, Mimo.
This year without my grandfather has been hard for her. Her fifty-seven-year marriage left Mimo with the conviction that sharing the joys and sorrows and challenges of life with a partner is the most important thing someone can do. Now, she’s investing herself in helping others find that same purpose. My relationship with Yoni gives her endless occupation, and she’s committed herself to making sure we stay together. It’s driving me a little crazy.
“Charity,” she says, with her characteristic accent, “you look beautiful. Yoni should see you. Where is he?” Her eyes grow mischievously wide as she looks for him.
“He’s getting some lunch for you,” I say. She seems pleased at the privacy.
“So,” Mimo asks, getting right to the point, “when are you going to marry him?”
“And what if I don’t want to marry him, Mimo?” I respond, starting to get annoyed.
“Well, you know what they say . . .” she continues cryptically.
“Tell me.” Wait! I take it back! But it’s already too late. Darn my big mouth.
“If a man marries a woman before she is twenty-four, she’s doing him a favor. If a man marries a woman after she is twenty-four, he is doing her a f
avor!” She’s visibly pleased with this gem. Should I laugh or scream? I am in the hospital. Even if I don’t take it too seriously, my own grandmother should! Inhale. Exhale.
“You do love him, don’t you?” she demands.
“Of course!”
“Well, he obviously loves you,” she continues. “Charity, do you think that he is a dime-a-dozen man? Sleeping on the floor of a hospital room just for the privilege of being with you? Do you think other men will be like this? You are crazy if you do. Most men will run away. They will run away as fast as they can when there is a problem! They do not want to deal with that. They want someone who is nice and easy. You are very nice, but you are not easy. This is not easy. I was married to your grandfather for almost sixty years and at the end, even I wasn’t here like this, sleeping in the hospital beside him!”
Ever since I turned twenty-five, it seems everyone I know has become obsessed with marriage. It’s like it’s the only real life goal worth having. It doesn’t matter that there is work, meaning, and opportunity beyond being a wife and mother. It’s as if without a witness, a woman’s life isn’t worth living. It’s not that I don’t care about marriage, it’s just not my top priority. I enjoy being in love, but I could care less about nabbing a ring. The thought of dying a virgin doesn’t bother me. There are so many things I want so much more than sex. I want to sing and perform. I want to be happy. Most of all, I want to live—preferably without worrying that I’ll faint, that my heart will fail, or that I’ll contract an infection and die. A man is nice, but just being alive is a miracle. Making great music elevates that to the sublime. Mimo just can’t understand.
“Mimo. I don’t think either of us are ready to get married,” I edit myself, on the edge of patience.
“Charity, he obviously is and you are not getting any younger.” Mimo isn’t editing anything. “He wouldn’t still be here if he wasn’t ready to marry you. More importantly, he’s the one. I knew it with your sister and now with you. This is your match. If you let him go, you let go of your chance at happiness in this life.”
Before I can respond, Yoni bursts in with sandwiches—blissfully unaware of our conversation.
“Mimo!” he says, embracing my grandmother. “Do you want turkey and cheese or egg salad?” Mimo gives me a knowing stare, then redirects her energies to lunch.
Hours later, golden glories stream through the window marking dusk’s arrival. It’s time for Mimo to go. She walks over and gives me a kiss, admonishing me, “Don’t forget. Not a dime a dozen.” With that, Yoni walks her out to the car.
A nurse enters and takes my vital signs. There’s another visit from a doctor, and some unappetizing collection of food comprising dinner. The day’s events blend together as Mimo’s words echo in my mind.
Yoni returns from the car, smiling. “You know, being in a hospital is like being in a full-service hotel. We have a TV, the staff is nice, we don’t have to clean . . . it’s like a little vacation!” He has this childlike ability to see the good in everything and everyone. Later that night, as I watch Yoni snoring contentedly, the side of his face glistening with drool on Mimo’s sagging air mattress, I know she was right about at least one thing: Yoni is not a dime-a-dozen kind of man.
An alarm jolts me awake just past midnight. I look at my monitors—my blood pressure has dipped to 49 over 36. A breathless resident arrives in my room. I’m fond of freshly minted MDs—they’re bright and enthusiastic—but hospital mortalities spike in the first months of residencies and it’s just after the start of the school year. While the attending physician is still at home, my life is in inexperienced hands.
A parade of residents promenades into my room. By now, my blood pressure’s fallen even further. This is one of the rare moments that I’m grateful to know my disease so well. “Let’s stop the diuretics,” I suggest, knowing the medication lowers my blood pressure. A bespectacled resident with floppy hair quickly removes the drip. My numbers stop their descent.
“That’s good,” says his pretty colleague with a crown of black braids. “But we need to move those pressures up fast.”
Within a few minutes, the team of young doctors has devised a plan. They start a new IV drip and, slowly, my blood pressure begins to tick upward. By the time the managing physician arrives around 2:00 a.m., my numbers have stabilized. The doctor and the residents disperse—except the one with the glasses. He pulls up a chair outside my room and sets in for the night.
Where is Dr. Girgis? I’ve been in the hospital for four days and I haven’t seen him once. My water weight is practically gone and I’ve had just about enough of the hospital. I’m preparing my second speech of the week in my head when the door swings open.
“Charity, what have you been eating?” It’s Dr. Girgis. He is not pleased.
“What do you mean?” The question catches me off guard.
“There were over twenty pounds of water on you . . .” he notices something out of the corner of his eye as his sentence trails off. Marching over to my belongings, he picks up a crackly foil bag. “Potato chips, Charity?!”
I burst into tears. Other than the strategically consumed burrito that I’ve conveniently forgotten, I’m maniacal about limiting my sodium intake. No bread, no processed foods, no eating out. On a typical day, I consume less salt than naturally occurs in a bunch of celery.
“Dr. Girgis!” I exclaim. “They have no salt! Look at the nutrition panel! The swelling wasn’t because of salt—I promise!”
He looks at the bag, then pauses gravely—
“Charity, you are very sick. You have advanced right-heart failure. I have tried to facilitate your life, but the only way I can continue to do that is if you wait for a transplant.”
I feel my heart in my throat. Transplant has always been a possibility, but to me, it sounds more like a death sentence. In medicine, lung transplant surgeries are considered some of the most complicated. Massive blood loss, permanent nerve damage, and failure of other vital organs are commonplace. With a 50 percent mortality rate at five years, the prospect for long-term survival is bleak. On top of that, I have no guarantee of a life worth living post-op. During the surgery, large breathing tubes are shoved down the larynx through the vocal cords. If that doesn’t destroy my voice, the tracheotomy (where doctors cut a hole at the base of my throat to hook up a respirator) almost certainly will. So I’ll be left voiceless and disfigured. That is, if I even survive.
I understand Dr. Girgis’s point, but people have been saying I’ve been deathly ill for five years and I’m still here. No one in Europe could even tell I was sick! I can’t believe lungs that can facilitate the kind of singing I’ve been doing could be in that bad of shape. I start to protest, but Dr. Girgis cuts me off—
“Five years ago when you came into my office, I believed your prognosis was better than other specialists did. It was. You’ve sung all over the world. You’ve built a career. You have a real life.” He looks me squarely in the eye. “As the doctor who was confident that you could do everything you’ve done over the past half decade, I must tell you your situation has changed. You are going to die very soon if you do not receive a transplant. I would like to activate your listing at the Cleveland Clinic immediately. You can leave for Ohio tomorrow. Your chances for a successful surgery are higher if you wait there.”
I’ve grown used to medical sermons, but not from Dr. Girgis. I don’t want to believe he’s right, but I at least owe him the respect of considering his advice.
“I’ll pray about it, Dr. Girgis. If I’m supposed to go to Cleveland, it will become clear to me by tomorrow afternoon. I’ll let you know my decision by then.” I have faith that miracles happen. If that miracle has to be a transplant, God will let me know.
Dr. Girgis has cared for me for five years. Without him, I never would have reached my twenty-sixth birthday. He’s always been focused on letting me live my life as best as I can, even with my disease. But looking into his eyes now, I realize that Dr. Reda Girgis knows I’m
dying. So his response surprises me—
“That should be fine,” he answers. “I’ll see you tomorrow.”
It’s another early morning in the Nelson Building at Johns Hopkins Hospital. I’m greeted by a familiar nurse. Reddish-blond curls frame her pleasantly freckled face. Pale blue-green eyes, tired from a night of too little sleep, peek out from behind bangs. She’s seen and cared for me more than a few times over the years. We’re friendly and I respect her insights. She’s seen thousands of patients. She knows what she’s doing. When the hospital’s quiet, she’ll frequently linger to chat with me about family, religion, politics, or medicine. This is one of those mornings.
After getting an update on her sons, I have a question for her no one else seems willing to answer. “My doctors want me to get a transplant, but honestly, how successfully do people recover? Do you think I’ll ever sing again?”
The nurse pauses, looking at me with kind concern, down to the floor, then back at me again.
“Charity, you know, I see these patients every day—the patients who need lung transplants. You’re not like them. They are very, very sick. You still seem healthy.” She pauses, stammering a bit before collecting herself. “A lot of people don’t make it. I don’t know how you’d sing. The scarring is terrible. If you live, your life will never be normal. Don’t do it.”
A sense of righteous vindication envelops me. “That’s what I’ve been worried about. Thank you so much for being honest.”
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