by Eva LeNoir
They come when you least expect them.
When you least want them.
They assault you with their reminder that all is not the same.
That you are not the same.
That life has not been kind.
That you failed.
And then, suddenly, when you’re at the deepest end of your emotional abyss, memories of a life of laughter and contentment pop in to walk you off the ledge of despair.
A song.
A scent.
An image.
These were the thoughts going through my mind just two days ago when my father’s doctor explained that the man who had been taking care of me since the day I came into this world, had, at best, one or two good years.
At best.
One or two years as the man I know and love.
Seven hundred and thirty days.
One hundred and four weeks.
That was all I would get, best case scenario.
As I’d sat there, surrounded by medical journals and useless diplomas adorning the four walls of the doctor’s office, I’d done my best not to curl up in the corner and slam my palms over my ears. I remembered wanting to close my eyes and pretend this was some TV drama I was watching and not real life. I’d wished I could go back to when I was five years old and life had been one fun day after the other.
I’d wanted to scream at the top of my lungs and drown in the comfort of ignorance.
But I’d done none of those things. I was all my father had left, and I would be strong for him. I would fight this battle with him and for him.
I refused to cower in the face of despair.
“I’m sorry, Mr. Hughes. The disease has progressed at a faster pace than the average, although it is always difficult to time these things.”
Dr. Moore was a nice man. Probably a great doctor, doing his best at bedside manners. The white mop of hair that sat haphazardly on his head reminded me of the Q-tips standing proudly in their glass container back in my bathroom. He was experienced, he knew what he was doing. My father had done his research and Dr. Moore was the best in the region, if not the country.
Yet in my eyes, he knew nothing.
Not one thing.
“Jaidyn, sweetheart, are you okay?” I shook my contempt away. This man did not deserve the anger and hatred I felt at that moment. Neither did my father.
My dad used to say that anger was the window of despair. It was unfair to confuse the emotions I was feeling.
“Ah, yeah. Sorry. I was just, you know, processing,” I answered, squeezing my fingers tightly to avoid the downfall of my prickling tears.
I need to be strong, I reminded myself before turning toward my dad for comfort.
The tiny smile at the corner of my dad’s lip wasn’t a smile at all. It was a tick.
Chorea, they called it.
Merriam-Webster defined the term as “a movement disorder marked by involuntary spasmodic movements especially of the limbs and facial muscles and typically symptomatic of neurological dysfunction (such as that associated with a neurodegenerative disease or metabolic disturbance).”
My definition was simpler.
Hell.
It was my own personal hell, watching my father’s motor and cognitive skills diminishing with every passing year.
Worse still, I would take every single progression of chorea a thousand times over if it meant he could live forever.
But he wouldn’t.
He had one or two years. From that point on, my life would be synonymous to the end of his.
“Mr. Hughes, Jaidyn, I know this is difficult to hear,” Doctor Moore said in his highly trained doctorly voice. One that could soothe and condescend all at the same time. “Robert, listen,” he looked straight at my father, as though about to tell him the secret of life, “Now’s the time to do all the things you never could before, live. Do things. Enjoy your time with your daughter. But we also suggest you get your paperwork in order while you are still of sound mind. This is to help Jaidyn in the coming years with the decisions she must make.” In other words, “get your last will and testament ready so no one takes your money away from Jaidyn.”
I wished I could tell them all to stick my father’s wealth up their doctor-ly asses, but I couldn’t do that either. Eventually, I would need the money for his medical care. To pay the bills and to ensure I finish medical school.
Oh, irony.
You are a demented bitch.
“I already have,” I heard my father explain, the first syllable of already lagging behind, sounding like he was speaking underwater. Another symptom. Speech impediments.
My head snapped to the right, my eyes locking on his profile where I could see him grinding his teeth to avoid the spasms in his facial muscles. It was all in vain.
“What do you mean, you already have?” I asked, my voice a little harsher than intended, but my pain and anger and mostly frustration with this cruel disease getting the best of me. “I thought we were doing everything together?”
Now, I just sounded like a spoiled brat.
Make no mistake, I was just that.
My father had been spoiling me from the day I was born until this very moment. Huntington’s Disease, however, gave me a painful reality check.
Patting me on my jean clad knee, my father said, “Just a precaution and basically legal jargon that would have put you right to sleep.”
He wasn’t wrong.
I could read a textbook on micro-biology from cover to cover and feel only fascination but a legal document? It was more efficient than Ambien.
“Still, Dad, I would have helped you, you know that.”
“Clara,” the doctor called through his phone to his assistant, “please make sure Mr. Hughes’ Tetrabenazine prescription is ready along with his Citalopram. Add in the CBD sativa-dominant,” he paused, looked at my father and asked, “how would you prefer taking it? I don’t recommend edibles as swallowing will inevitably become more difficult.”
My father nodded, squeezed my hand and said, “Oil and vaporizing.”
“Good combination,” Dr. Moore said approvingly. They provided the least amount of side effects, relaxing him the most. He then gave his secretary his final instructions.
As he spoke, I stared at him, watching how easily he formulated his words. Each syllable perfectly accentuated. Every pause calculated. Not a single tremor or tick. Zero difficulties getting his point across. Suddenly, I was angry again.
Why my father?
Ten percent of the American population and it has to include my father?
“Jaidyn, before you go, I need to try again,” Doctor Moore said, looking stern and a little frustrated with me, as well. I knew what he wanted me to do. But I just couldn’t.
I was a coward.
A disappointment.
But I just couldn’t.
“No,” I looked him straight in the eyes, my tone final.
“But, it doesn’t,”
“I said, no,” I interrupted whatever nugget of wisdom he was about to bestow upon me. “Once I know, I’ll just obsess over it and frankly I’ve got enough going on.” I didn’t need to elaborate; we all knew what I meant. I would take care of my father before I would ever consider myself. I’d promised myself, six years ago, that I would be the rock my father needed, that he deserved.
Knowing my luck, I’d probably regret not taking the blinders off sooner.
Chapter 4
Jaidyn
“Hey, babe,” I answered when my screen flashed with Calvin’s name.
“I’ve been trying to reach you all day,” he said, his voice a perfect balance between worry and accusation. He’d been doing this more and more, lately. Granted, our situation wasn’t ideal.
“Yeah, sorry. I had a meeting in LA,” I told him as I opened my car door and plopped myself into the front seat.
I had just dropped my father back home so he could rest. The long roundtrip car ride wore him out, and the more tired he got, t
he harder it was for him to concentrate. Then the tremors would get worse, increasing his exhaustion.
“What were you doing in Los Angeles?” he asked, the sound of pages turning in the background coming to an abrupt stop. I sighed. Not only had I told him two days ago about the doctor’s appointment, but I had also sent him a reminder text message yesterday afternoon, after my classes, about the meeting at The Dream List Foundation.
“It was for my dad, remember? I told you about the project he’s been working on?” I said, biting back any bitchiness in my tone.
“Right, you told me that,” he groaned, “Sorry, I’ve been slammed with studying and we have that charity event scheduled with the fraternity, so my concentration has been off these last few days.”
Calvin Carmichael was perfect on paper. Handsome, athletic, from a good family, whatever that meant these days, and generally, a kind man with those he loved. But he’d been raised by a traditional family. Traditional in our society, meant old money. A family that expected certain roles to be filled, rules to be followed and reputations to be preserved. I knew what I was getting myself into when we first started dating, mainly because they laid out their twenty-year plan when I was just seventeen years old. Back then, I didn’t particularly care, the burden of their expectations a distant future. All I knew was that Calvin was gorgeous and he treated me like the queen my father had always told me I would become. It was perfect. He was perfect.
That was until we grew up and life decided to douse me in my own harsh priorities. My father came first, my education was second which put Calvin as my third and he was beginning to get tired of his inferior rank. Not surprising when he’d been placed front and center his entire life.
“I’m looking forward to seeing you this week-end though. That charity function is black-tie, by the way, so I was thinking you’d bring that light blue dress you wore for the…” I drowned out the rest of his phrase, my mind racing, trying to remember today’s date.
Was the charity thing this weekend?
It couldn’t be.
Looking at the screen on the center console, I stared at the date and bit my lip with worry.
Dammit.
It was already Thursday and my classes ended at noon on Friday. His ended at four which meant he expected me to make the seven-hour drive to see him. On top of that, I needed to get a manicure and an appointment at the hair salon. Things I hadn’t thought about in the last couple months.
I just couldn’t do it.
It was too much.
“Would you be upset if I took a raincheck? I’ve been so busy this week between preparing for finals and my dad. It’s just a lot, you know?” I said softly, knowing the storm would be coming.
“A raincheck? Jai, it’s a charity function not a simple dinner date. I mean, I get it, you’ve got a lot on your plate, but this is important for me,” he admonished, making me feel like a brat for thinking of myself. I knew this was important for him, his social status now was the thermometer for his future standing. That my rising anger was mostly due to the crap I was dealing with, but I couldn’t help feeling, unseen and inconsequential.
I said nothing, just sat there listening to the lingering silence on the line.
Why am I doing this to myself?
“I have to go. I’m sorry.” I hung up and threw the phone on the passenger seat, blowing out a breath of frustration.
Not two seconds later, the phone rang and vibrated next to me. I knew it was Calvin calling to sweet talk me into making that drive. It was a gift, his persuasive, eloquent voice. He would say all the right things, give all the convincing arguments and then I’d wear myself out to make sure I played my role as the smart, beautiful, future doctor on his arm. The next power couple on the rise. Breeding at its best.
My father was the owner and CEO of the biggest import/export company in the country with private and governmental contracts making sure we had food on our table, and more.
Much more.
Calvin’s parents were the name partners in the top three successful law firms in California: Catering almost solely to the stars. Their headquarters in San Diego was ideal for fleeing the paparazzi when celebrities needed legal advice. Needless to say, Calvin’s family wasn’t starving either and his place at the firm was practically set in stone.
We were cut from the same cloth.
Except…
While Calvin was seeking out validation in the form of power and financial success, I was quickly realizing that no amount of money could bring me true happiness, make my dad live longer.
“Fuck it,” I whispered, and put the car in drive. I needed to get my dad’s prescription filled and come back to make dinner.
Calvin was right, my plate was full, just as my priorities were on point.
I came back home to find my dad sitting in the home cinema with a bag of popcorn, watching Casablanca.
Again.
“Hey, you want me to make dinner?” I asked, sagged into the theatre seat beside him.
“No, no. I’ll be fi-fine,” he stuttered on the first syllable, a clear sign he was tired.
“Dad, you need to get some sleep. And take your meds.” I told him, sounding more like a mother than a daughter.
“You know, your mother and I used to w-watch this movie over and over again. I used to tell her I loved the s-suspense, but she knew better. I just loved watching her melt at all the heart-wr-wrenching scenes.” I’d heard this story more times than I could count. In my mother’s retelling, Dad had been the one suggesting they watch the classic film so often.
“Dad, you need to get to bed early, get some rest.” I repeated, hoping he’d take the hint. Talking about my mother was not on my to-do list. To be honest, it hadn’t been a priority since she’d packed her bags and decided living in England, without us, was exactly what she needed.
“You weren’t happy today at the foundation,” he declared, shoving a handful of popcorn into his mouth, his hand not moving exactly as he’d wanted causing a few kernels to fall to the floor.
“We don’t need to talk about this now, Daddy. You’ve had a long day, you need to get some rest,” I told him, reaching down to pick up the falling pieces.
“Don’t do that!” he cried out, “it’s not your job to pick up after me, JaiJai. My God, you are twenty-one years old. Stop acting like my mother!”
I was used to the sporadic outbursts. Ever since his onset over seven years ago, his temperament had shifted, his moods clouding over as the disease progressed.
The first time I’d heard my father yell, I’d truly believed my world was crashing and burning all around me. I was fourteen and before that moment, he had never raised his voice, neither at me nor my mother.
Fast-forward seven years, and this was my normal.
It put a lot of shit into perspective.
“If I don’t take care of you, what am I going to do with all of my free time?” I asked playfully, ignoring his frustration.
“You graduate in a couple of months,” he said, stating the obvious and avoiding my question.
“Yes, I do, and I can also take care of you.” The optimist in me always reminded me that caring for Dad was good practice for my career in medicine. I reached in and grabbed a handful of buttery popcorn, watching without truly paying attention as Humphrey Bogart drowned his sorrows with a bottle and a cigarette.
“Why are you still with that Calvin?” he asked as though it were the most natural thing in the world.
I almost choked on a kernel.
Coughing, I tried not to lose my shit.
“I’m sorry, what?” I croaked.
“You heard me, b-baby girl. We’re going to enjoy what little time I have l-left on this earth.” This had been his words two days ago when he announced our year-long sabbatical so he could empty out his bucket list. As angry as his unilateral decision had made me, his current question puzzled me more than anything else.
“And the correlation between our little trip and Calvin
is…” I let my phrase hang between us, watching Bogart pine over the love of his life.
The irony that this was my parents’ favorite movie and is pretty much how my mother left all those years ago, was not lost on me.
“Think your relationsh-ship can survive the dis-stance?”
“Considering we’ve been in a long-distance relationship for the last four years, yes.”
“JaiJai…”
“Dad, no. Look, you made a decision without even consulting me about it. As pissed off as I was when you told me, I’m warming up to the idea.” I wasn’t about to mention that the Marlon Brooks bonus had helped tremendously, “But my relationship with Calvin is none of your business.
“JaiJai,” he whispered, reaching out and covering my hand with his.
I turned my hand and squeezed my fingers lightly around his. My emotions were all over the place these past couple of days. From helplessness to anger with a pinch of lust dropped in the mix, I honestly didn’t know what would happen with Calvin. I was so… used to him? I mean, we fit on paper and this physical distance meant I didn’t need to take care of another human while devoting myself and time to my dad and my training. Ultimately, the former would no longer be and maybe Calvin would be able to fill the massive void my father will have left me.
“Daddy, maybe he’s wrong. You know? A lot of doctors make mistakes, right?” I felt like a little girl, hoping fairy tales were real life.
“We’ve been lucky, so far. But I w-won’t be this lucid and able for much longer, now. Deep in your heart, you know this.”
I did. And I hated it.
“Why are you asking about Calvin, Dad? You’ve never meddled before,” I asked with curiosity tinging my tone.
“Because, for the first time in a long time, I saw a spark in your eyes that I was afraid I’d snuffed out years ago,” he turned his head, a small smile at the corner of his mouth.