by CJ Lyons
This is why doctors make the worst patients. Our knowledge leaves us powerless. Forces us to lie to ourselves, to those around us. To deny the truth and seek the impossible. But my lies were swiftly crumbling to dust.
“Going.” I somehow found the strength to tell him.
He glanced at the clock. “There’s plenty of time.” Another lie, but he didn’t know it. He patted the empty pillow beside him. “Come back to bed.”
God, how I wanted to.
“I can’t.”
He blinked, nodded. “Your appointment with your doctor. That’s today, isn’t it?”
I stepped back, away from him, from everything he had to offer. He was breaking the rules and he knew it—my illness was off-limits. Here, in his house, in his arms, it did not exist.
Anger flooded over me. He didn’t deserve it. They were my ridiculous rules, and he’d been patient for three long weeks, but still, I couldn’t help it. I wasn’t angry with him. I was angry with the entire universe. Heaven and Hell. From the farthest celestial body to the microscopic proteins ravaging my life. So damn angry. All the time.
One more reason to leave. Before my rage poisoned what we had together.
So I did. I’m not proud of it. I ran. From his questions, from his half-hidden glances of concern, from everything he offered without asking for a single thing in return except the one thing I couldn’t give him, not without destroying us: the truth.
What comes after dread? Fear.
I’m not used to feeling like this. Afraid. Usually, I’m the one people turn to when they’re afraid and need saving.
Except this time, I’m the one who needs saving.
I’m Angela Rossi. I’m thirty-four years old, and this is the story of how I die.
I’m a lover and ex-wife and sister and daughter and friend, and this is the story of how I betray them all.
Most of all, it’s a story of redemption.
And hope.
Guess it all depends on your point of view….
Chapter Two
Glistening white-sand beaches, gleaming ruby-turquoise sunsets, graceful arching palm trees…the Tahiti travel brochures duct taped to my refrigerator promised escape.
Sodden Pennsylvania December skies, diamond-edged sleet, wind chill hovering a few degrees above freezing…that was the reality outside my apartment windows. A cold front had moved in after I returned from Ryder’s house with Ozzie a few hours ago.
I downed my handful of morning meds and drank a stringy, green antioxidant shake straight from the blender before it had a chance to congeal. The stuff tasted as foul as it looked. But when you’re down to last chances, you learn to swallow your pride.
Since I’d arrived home, while Ozzie snored on the couch, I’d pounded away the miles on my treadmill, trying to force my body to produce the endorphins I’d need to keep me functional in court today. Endorphins that a brush of Ryder’s gaze and a single touch of his lips could produce effortlessly. I hated how I’d left Ryder, wished I were able to go back and invite him to stand with me when I went to the hospital today to learn my fate.
Hated myself even more for wanting that. Selfish. Cowardly. Leaning on Ryder, letting him get closer…that path led to heartache for both of us.
When the running didn’t work, I turned to my fiddle, my lifelong refuge from reality. But after my shaking hands produced an off-tempo, discordant symphony of missed notes, the strings escaping my fingers, I threw it down in frustration.
As the clock ticked down to when I’d have to leave for my appointment, I made a mental list—I couldn’t bear to write it down—of everything I’d need to take care of after today: telling my family, helping them mourn, making final arrangements. Death strikes in an instant. You’re there, then gone. But dying…dying is a logistical nightmare.
My mood turned as leaden as the sky outside. Not that Cambria City is known for its sunshine, but it seemed as if we were getting more than our fair share of gray and dreary this winter. Ozzie looked up from where he lay on my couch. I finished my shake and sat on the arm, idly scratching between his ears with one hand while I turned on the TV with the other. Animal Planet, his favorite. He thumped his tail in thanks.
I looked around my loft as if I might never return, already missing the old-brick walls, heart-of-pine floors, jumbled books, scattered medical journals, and dirty laundry. I lived in the same apartment I grew up in, above my Uncle Jimmy’s bar. It’s the closest I’ve ever come to a home.
Leaving the TV on for Ozzie, I grabbed my bag and left. I didn’t want to be late. The thought stopped me. Didn’t want to be late? I was headed to my neurologist’s office to see how long I had left to live.
I shook my head, torn between laughing and crying and settling on neither. Instead, I wrapped myself in the numb limbo I’d worked so hard to create these past three weeks. A calm before the storm. Or maybe simply a calm. Wouldn’t that be nice? Escaping the anger and bitterness and regret by embracing denial.
Denial. It was so unlike me, the rebel, the fighter; I felt like a stranger to myself. I hadn’t felt this way, this weird, almost out-of-body disconnect with reality, since I was twelve and my father died. God, how I missed him, even twenty-two years later. He gave me my first fiddle, taught me how to play, his foot keeping time, his smile bringing the notes to life.
Not even that memory could break through the brick wall my emotions hid behind. I clutched the doorknob to my apartment. It took all of my energy not to turn tail and run back inside and hide under the covers.
No. I would not stop fighting. Could not give up hope.
But first, I needed to know who the enemy was.
Clattering down the stairs, I made the mistake of leaving by the front door, which meant crossing through my uncle’s bar. It’s a traditional dark-paneled, working-class Irish pub with high-backed booths, large tables scarred with cigarette burns and knife marks, and a stage for live music. Music is a family affair, going back to the ceili band my father founded decades ago. Dad was Italian, but with his love of traditional music no matter the nationality, he fit right in with the Kielys, my mom’s boisterous Irish clan.
My hopes of escaping undetected were shattered when I ran into Uncle Jimmy. He’s a Kiely, my mom’s older brother, and like all Kielys, except me, has strawberry-blond hair and a complexion prone to flushing when he drinks too much, which all Kielys except me are prone to do. Me, I’m a Rossi through and through with my dark curls, high cheekbones, and deep-set eyes that mirror my dad’s so much that after his death, my mom couldn’t bear to look at me without breaking into tears. Thankfully my sister, Evie, two years younger than I am, takes after Mom’s side of the family and never makes Mom cry or look away or sigh.
Jimmy was taking inventory after the weekend festivities. He glanced up from his clipboard and frowned at me. “Didn’t you just get home a few hours ago? Where are you off to now?”
I was used to his prying. No one in my family ever minded their own business, at least not when it came to my life. It was the price I paid for being the prodigal returned home. “I have an appointment. Will you keep an eye on Ozzie for me?”
“It’s not even seven in the morning. What kind of appointment has you dressed like you’re going to Mass? Not that we ever see you there.”
I’d changed into my court outfit: my best slacks, an ivory blouse, and a red blazer. Last thing I’d admit to was a visit with a doctor. “I’m picking up a rape victim and taking her to court.”
I moved to rush past him, but he stepped into my path.
“Well, you can spare me a minute, young lady. We’re all worried about you, the way you’ve been acting these past few weeks. Out all hours, barely home at all, not bothering to visit your mom, only dropping by to play a few sets and then vanishing again.” He set his clipboard on the bar to give me his full attention. “Not to mention that new guy who keeps coming around. The cop.”
Ryder loved hearing me play my fiddle with the ceili band and would drop b
y the bar to listen. He understood that I needed our relationship to remain private. I couldn’t even fully explain why. It somehow made my time with him feel special, divorced from the ugly reality I faced every day. Last thing I wanted was him pulled into the drama my family generated as effortlessly as breathing.
Jimmy squinted at me when I didn’t answer. “Haven’t seen you take a drop, not here at any rate, but if I didn’t know better—”
I held back my impulse to tell him to look in a mirror. “I’m not an alcoholic.”
“Must be drugs then. Your playing is off. I’ve seen the shakes hit when you think no one’s looking. I’ve seen how cops drink. Cleaned up after their other vices. What’s that man gotten you into?”
“Nothing,” I snapped, hating that he blamed Ryder.
His face creased with concern, and I reined in my temper. I might be an adult, a physician used to making life-and-death decisions, but to my family, I would always be the twelve-year-old girl whose poor judgment got her father killed.
I placed a hand—non-trembling, thanks to the meds I’d just taken—on his arm. “I’m fine. Really.”
He clapped his hand, large enough to swallow mine twice over, on top of mine and squeezed. “Then why did the ER let you go?”
“They didn’t.” From his expression, he didn’t believe me. “I wasn’t fired. I resigned. Thinking of moving. Trying something, someplace, new.”
There. I’d lit the fuse. The explosion would come after he passed the word down the family grapevine and it reached my mom, Patsy.
“Move?” His hand fell away from mine. “What nonsense is that? You can’t leave—you’ll break your mother’s heart.” The “again” remained unspoken.
The bar’s front door blew open, a gust of cold wind and a spark of sunshine casting aside the gloom. My younger sister, Evie, was carrying a cardboard box. Jimmy ran to help her while I shut the door against the December cold.
“Good, you’re both here,” she said, shaking her strawberry curls. “I was hoping to catch you.”
“I’m on my way to court,” I said. It was much too early to deal with Evie’s eternal cheeriness.
“This won’t take long,” she said. Jimmy set the box on the bar, and she opened the top. “Mom wants twinkle lights for the Christmas party.”
Our family celebrates Christmas Eve with an all-night party in the bar, open to everyone, filled with nonstop music, drink—and apparently this year, twinkle lights. Jimmy picked up a handful and grimaced. “I’ve already hung the evergreens she wanted, decked the halls with boughs of holly, even replaced the Christmas tree when she decided against the blue spruce,” he protested. “But I draw the line at fairy lights. Next thing you know, she’ll be wanting glitter on the damn taps.”
My mom, Patsy, was the youngest Kiely sister, but she ruled the clan. She always got what she wanted—but that didn’t mean she got it without a fight. Sometimes I think the Kielys lived for bickering, reconciling, and beginning the cycle all over again. I never understood it or learned how to play the game.
Now Evie? She was a master. She beamed at Jimmy, stood on her tiptoes, and kissed his cheek. “Do it for me, Jimmy? They’ll look so pretty hanging from the rafters.”
He blushed and nodded. Then she turned to me, handing me a piece of stationery with Patsy’s elegant printing. “Here’s the playlist Mom wants to start the party. She thought you could give it to Jacob.”
Jacob is my ex. We were married two years, divorced for almost four. My family conveniently refuses to acknowledge the divorced part, as Jacob is an integral member of the family ceili band. Can’t say I blame them. There have been plenty of times when Jacob and I also conveniently forgot we were divorced.
I dutifully pocketed the playlist. Jacob worked for the public defender’s office, so we’d be on opposite sides today as he defended Tymara’s rapist. Maybe I’d wait until tomorrow to give him Patsy’s list.
I turned to leave. “What time will you be home?” Evie called after me.
“Not sure.”
“But you are coming home?” With my back to her, it was impossible to tell Evie’s voice from my mom’s, they sounded so much alike. “Angela, you aren’t in trouble, are you? We’re worried.”
“I’m fine,” I lied and walked out the door, closing it on their suspicions and unvoiced accusations. Jimmy and Evie were only the first hurdle and by far the easiest. But sooner or later, I would have to face my mom.
Tahiti never looked so good.
Chapter Three
Louise Mehta is my neurologist. She’s also my best friend. Used to be, any time the two of us got together, it involved good wine and bad jokes. You have not heard a dirty joke until you’ve heard it told by a middle-aged, meticulously dressed Indian woman with a faint upper-crust British accent.
Only, it’s been weeks since I’ve heard Louise joke about anything. Telling your friend she probably has a one-in-a-hundred-million, rare, always-fatal disease pretty much kills any punch line.
Louise loves routine, likes everything to follow a precise order. Her favorite thing is to check items off her many lists—lists of questions to ask patients, lists of articles to read, lists of groceries to buy. She’s governed by bullet points.
I’m not. As an ER doc, chaos is my constant companion. Lists and practice guidelines, standard operating procedures, paperwork in triplicate—they all give me hives. I like being flexible, juggling a bunch of ideas—many contradictory—all at once, playing devil’s advocate.
“Good morning. How are you feeling?” Louise’s gaze was fixed on my chart as she entered the exam room where I waited. Trailing after her was a dark-haired man in his early thirties, his white coat brimming with tools, including the longest reflex hammer I’d ever seen. The tablet computer clutched in his hands was a match to the one in Louise’s pocket.
“Resident,” was my diagnosis. I restrained an eye roll. Amazing. I’d gone from attending physician to lab rat in a matter of days. Guess I knew what my tests were going to show if Louise was putting me on display for her neurology residents.
She glanced up, surprised I hadn’t returned her greeting. Never mind that it was the kind of greeting you gave a patient, not a friend. She saw me staring at the man. “Oh, sorry. This is Tommaso Lazaretto, a visiting neurofellow from Penn. Tommaso, this is Dr. Angela Rossi. Tommaso has done some work in prion diseases, so he’s very interested in your case.”
I transferred my stare to her and arched one eyebrow. I felt an illicit rush of satisfaction when she flushed. “Tommaso, why don’t you wait outside? Angela and I have a few things to discuss.”
To his credit, Tommaso stepped forward and took my hand. “I’m so pleased to meet you, Dr. Rossi.” He had the faintest of Italian accents. “I’m sorry it’s under such unfortunate circumstances. I look forward to working with you.”
I gave him a lukewarm handshake, having no patience for niceties. Not when Louise held my future in that file in her hands. Tommaso left, carefully closing the door behind him. Leaving me and Louise and my unnamed diagnosis trapped inside the tiny room.
Louise leaned against the closed door, looking down at where I sat on the swivel stool traditionally reserved for the physician. I’d taken it by habit and, once on it, couldn’t bring myself to move to the patient exam table.
I drew in my breath, steeling myself. Didn’t even give her time to take the other chair and sit down. “What did the DNA results show?”
Her face told me everything I needed to know. “We were able to isolate your father’s DNA from the sample you brought in.” I’d stolen my dad’s old straight razor from my mom’s stash of his keepsakes. “The results confirmed my suspicions. Although there are some abnormal genetic markers, your father tested positive for Fatal Familial Insomnia.”
Her voice was steady, clinical. I was glad. If she’d shown emotion, I don’t think I could have handled that.
She sank into the chair beside me as I processed this new reality. A strange
fog of relief swirled through me, leaving me with goose bumps in its wake. “Do you think—could he have had symptoms already? Back then? I mean…” My voice trailed off, a breathless sigh of hope.
Could twenty-two years of family lore be wrong? Because if fatal insomnia, with its muscle spasms, hallucinations, and sudden fugue states—episodes that left a person catatonic for a period of time—had caused my dad’s accident, then I wasn’t to blame. For the first time in my life, I could forgive myself for being the reason why he was out on the road that stormy night, coming to pick me up after yet another afterschool detention. Maybe the rest of the family would finally forgive me as well.
Louise didn’t have to check her notes. “Yes. It’s definitely possible that he already had symptoms. I’d love to learn more about his family, especially anyone else who died young.”
“Sorry, there’s no one. His mother brought him here from Italy after his father died, and she died—cancer—before I was born.” The facts helped distance me from the emotional tug-of-war raging in my mind. If Dad had fatal insomnia, then the odds I had it were fifty-fifty. Not just me, but my little sister as well. How the hell was I going to break it to Mom and Evie that she was at risk?
“And me?” I asked, sucking in my gut, preparing for the one-two punch.
She hesitated. “Indeterminate.” That was the problem with testing for a disease that only hit one in one hundred million people. “We’ll repeat it, of course. But given your symptoms, with him testing positive, I don’t see any other possibility for a diagnosis.”
Louise was the smartest person I knew. And the best doctor. If she had ruled out every other possibility, then that was that. The disease that had killed my father and let me off the hook for his death was also the disease that would kill me.
Okay. Okay. Now I knew what the enemy was—a microscopic protein known as a prion—the same thing that caused mad cow disease. A nasty, traitorous, crumbled clump of tissue had contaminated my brain, turning it into Swiss cheese.
