Jennie
#4. Stand up for something you believe in.
"Why, yes, I'd love to be bikini-body ready for Halloween," Ho-Jung drawled, pointing to the publication date. "We need to get this doctor of yours some new reading material."
Laughter shook my shoulders as I swung my feet from the end of the exam table. "Thanks for coming with me."
She reached out from her seat and gave my hand a squeeze. "There's no place else I'd rather be." Her smile was bright, and her eyes the same but with unshed tears.
"Don't be scared, Ho-Jung. I'm not scared." I wasn't. Resigned, maybe. Sad, even. But knowing I was limited on time made me more driven, more determined to live than anything else. I'd make it through that list.
She wiped away a stray tear and sniffed through her smile. "But you don't have to miss you if something…"
Now it was my turn to squeeze her hand. "One hundred ninety-two days. Now stop."
She narrowed her eyes. "Why on earth would you think that?"
"Irene and I were the same weight at birth, had the same hair, an identical smile, and now the same heart. She died 143 days after she turned twenty-one. I know how to do math," I interjected, and pulled the last sticky sensor off my chest from my EKG. I was never going to be the older sister, and it didn't matter if anyone else understood. I did.
"Jennie—"
"My life, my thoughts."
"Well, speaking of your thoughts…" She arched a well-maintained eyebrow. "Just what are you doing with Ms. California?"
"Lisa?" Saying her name elevated my heartbeat.
"Mmm-hmm. Last time I checked you were all but married to V." She kept going, despite my meanest glare. "Not that I object to Lisa. Gawd, Jennie, you sure can pick 'em. She's utterly delicious."
"We're friends. Just friends!"
"Right, protest much, Lady MacBeth?" She examined her perfect manicure.
"Stop using your major against me, Ho-Jung Elyse." I sighed, trying to find the words. "She makes me feel…free. That's something I haven't had. She doesn't treat me like I'm about to break."
"That's because she doesn't know you're breakable. I saw that coffee she brought you. You haven't told her about your heart, otherwise she wouldn't be bringing you caffeine."
My cheeks heated, and I started to pick apart the embroidery on the Etsy-made hospital gown Mama bought me. "I don't want her to know."
"And V?"
My chest tightened unpleasantly. "He knows I'm taking swim lessons from the one who saved my life."
"Mmm-hmm. That sure was a long three weeks he was gone for."
"What are you getting at?" I narrowed my eyes.
"When you got to class yesterday, you were all gushy, and you said V doesn't get home until tonight, so it had to be because Lisa stopped by the library." My mouth snapped shut. "I'm right, aren't I? No judgment, darlin'. As your best friend, I wholeheartedly approve of anyone who brings you to life like that."
"Seriously, she's just a friend."
"And my mama's just a makeup lady." She raised her eyebrow at me, since her mama was the top Mary Kay representative in southeast Alabama. "And what does V know?"
"He's fine with the lessons. He's actually happy, since he studies so much."
"Right, but does he know that you're falling for Lisa?"
"I love V! I most certainly am not—" The knocking at the door stopped my tirade before it got off to a proper start. "Come in." I glared at Ho-Jung for good measure.
Dr. Larondy walked in, a nurse wheeling in a laptop cart behind him. "Good mornin', Jennie." He pushed his glasses up his nose.
"Hey, Doc." I put on my best smile.
"No parents today?"
"Nope. They don't even know I'm here."
"You little rebel, you." He couldn't have been older than forty, but the smile made him seem so much younger. "Let's take a peek." He pulled my chart and sighed, which was never a good sign.
"Tell me."
Ho-Jung took my hand.
"Your symptoms are progressing, which, of course, is something we didn't want. Your EKG is showing arrhythmias—irregular rhythms in your heartbeat. With your hypertrophic cardiomyopathy, the present obstruction, and your family history of sudden cardiac death, well, we need to start a different treatment regimen. How have you been feeling?"
"I tire easily now," I admitted as he scribbled into my chart. "And sometimes it's hard for me to catch my breath, especially when my heart starts to pound, but passing out is new."
"How long were you unconscious?"
"I reckon ten minutes or so?"
"I'd like to start you on some medication to help regulate your heartbeat in addition to what you're already on. We're going to need to schedule a new round of testing and probably a heart MRI so we can get a good look at what's changing and where you sit surgically."
My stomach rolled. "Pacemaker?"
"That's definitely a good option, if that's what you want. It would control your heartbeat, but there's also the internal defibrillator that shocks your heart if it fails."
He went into the details of each, which I already knew, but my mind shut down, choosing instead to concentrate on the bird perched on the windowsill. He could fly away whenever he wanted—why would he stay here? I would fly away. I would soar above everything, choose what I really wanted for my future without thought for my heart's ability to handle it. But that wasn't my life.
I was held prisoner by my own body.
"Jennie?"
"Yes?" I blinked twice.
His lips pursed. "Do you need a minute? I know this is a lot to take in."
"No, I'm here. Sorry."
He nodded. "I know your parents want the pacemaker, but I'm only interested in what you want."
Mama was going to cry. Then she'd scream at me for being childish, but I knew it was fear getting the best of her. The pacemaker was the more reasonable choice, but I couldn't silence the nagging, unexplainable instinct that it was the wrong choice, that it wasn't going to save me.
"Have you given it any more thought since your last appointment?"
"My parents think—"
"I want to know what you want. You're almost twenty-one years old, and as much as they'd like to control every aspect of your medical care, they don't. They can't."
I licked my lips, dry from the hospital air, and finally gave voice to what I'd never been able to say aloud. "I don't want to keep coming back. I want this to be over with." Either way.
The bird flew from the windowsill.
"You're going to have to come back. This is something you'll monitor your whole life, Jennie, regardless of the treatment we choose here. Even something as drastic as a transplant would need to be checked on."
You sound like a petulant little baby. "Of course, I'm sorry. I do understand. What gives me the best chance at a normal life?" The life where I could take off my heart monitor, and drink coffee, and run after my kids.
"That would be the surgery we discussed, septal myectomy, where I would remove enough of the thickened area of the heart to eliminate the obstruction. But, given the abnormal rhythms you're experiencing, there's no guarantee you wouldn't develop a branch bundle block or need an implantable cardioverter-defibrillator. There are no certainties here."
I didn't want a bunch of foreign wires in my body, tethering me to a half life. Oh, Irene, what would you have chosen?
"How long do I have to make the choice?"
He set my chart down on the rolling table. "These episodes are only going to increase the worse the obstruction gets, and SCD is a very real possibility. We'll try the medication first, but if that fails, we're going to need a decision in the next few months. Six at tops."
One hundred ninety-two days. There were still so many little boxes I had yet to check off the list. I needed every one of those days to live, really live, not just exist. "I need more time."
"And I'm trying to give it to you. Medication first, but the choice is coming at you fast."
"I'll think about it. I understand what you're saying. I know I have to make a choice, and I'm thinking about it, but I'm not ready to decide. Not yet."
"Okay. Well, let's see how the medication goes. Moderate exercise, watch your sodium intake, and be aware of how you're feeling."
"Swimming? I'm taking lessons."
"Perfect. Don't go for laps or anything, keep it—"
"Moderate."
He smiled. "You got it. Okay, I want to see you again in a month." The nurse smiled as she wheeled the cart out of the room, but before he shut the door, he popped his head back in. "The pacemaker isn't the wrong decision, Jennie. If that's what you want, we'll do it. It's only the wrong choice if it isn't yours."
"Thanks, Doc." Something occurred to me. "Oh, one more thing?" He raised his eyebrows, and I flushed hot, but had to ask. "Um…about…sex?"
He didn't blink, God bless him. "As long as you can climb a flight of stairs and you're not winded—you're good to go."
Ho-Jung walked into the kitchen as I examined the label on my new meds. Less energy, quivering, loss of appetite, nausea, and vomiting. Yay, couldn't wait to see if any of those side effects called my name. First dose was down. I reckoned we'd see soon.
"Choose the darn pacemaker, Jennie."
"No," I replied calmly, taking a sip of the tart orange juice. The more I said it, the easier it became.
"Why not?" She raised her voice. "If it means you live, then why the hell not?"
I took another long drink and gave her my full attention. "I wouldn't expect you to understand."
"Don't you dare condescend me. I've been with you since day one, sat through every late-night internet search, and joined every it's-not-fair cryfest." She folded her arms across her chest, but they didn't cage the tension emanating from her.
"I don't want the wires or the limits, not when there's another option. It just feels wrong." I enunciated each word but kept my voice soft. She was about to blow, I saw it coming, but I didn't need to add to it, despite hot, painful anger that coursed through my veins, begging to be let loose on the crap hand I'd been dealt.
"Well, it's a hell of a lot better than cracking open your chest for heart surgery! For the love of God, were you not listening? You could die!" Her voice rose with every word until she was screaming. She slammed her hands down on the counter, shaking the napkin holder.
"Wake up, Ho-Jung, I am dying. My heart is going to fail just like hers did!"
"Then suck it up and make the safe choice! None of us want to lose you because you feel like living with a pacemaker isn't good enough for you!"
That stung but still didn't quell the fire raging through me. Mama, Daddy, V, Ho-Jung… Why couldn't I make them all understand?
"God, I miss being normal! I can't run, or go dancing like a twenty-year-old should, or do a million other things I want to do, have dreamed of doing. I have parents who look at me like I'm going to drop dead on the floor at any minute, which is a distinct possibility, and a boyfriend who barely makes love to me. He won't give me an orgasm because he's terrified, no matter how many times I tell him it's okay! To be honest, I have to beg him to touch me, and if he does, which is maybe once a month, his eyes aren't locked on mine, no, they're on this darn watch!" I lifted my wrist. "I've got everyone telling me to get a pacemaker at twenty, to not only accept all of this as my life, but to be grateful, because my sister didn't get it. Grateful!"
Her shoulders drooped like the fight fell right out of her, but I couldn't stop the words flying out of my mouth.
"I don't know what I want yet, but I know that there's a fine line between being a respectful daughter and trying to make up for them losing Irene. Maybe I want to take the chance that I could have a normal life. Maybe it's my chance to follow my instincts when they're screaming that a pacemaker isn't what my body needs. Maybe I deserve to think about every maybe before they slice me open and sentence me to a life I didn't choose because I was too weak and respectful to say no. And maybe, just maybe I need you on my side!" My voice broke, like even it couldn't handle the sheer longing within me.
She hugged me tight, her tears soaking into my shirt. "Oh, Jennie."
I took gulping breaths. "Be on my side, because no one else is."