I’ll never forget the moment my father’s eyes danced with recognition. His bright blue eyes met mine and it was the last time it was meant to be.
It was a beautiful spring day in 2022, and the sun was shining, piercing through a dozen windows in the living room. It also illuminated the pale green walls and illuminated the bright teal kitchen backsplash. Woodpeckers pecked at the gray siding outside, and birdsong could be heard within earshot of every bedroom. A tire swing that had not been used for a long time was hanging in the garden. If I listened closely, I could hear my younger self begging my dad to push harder. Faster.
The television in the living room stared back at us. Blank. If anyone was home, the news would be on at this time in the morning. My father wasn’t here at this time on a weekday. But everything changed when he started showing symptoms of aphasia. Aphasia has been found to be an invariably fatal neurodegenerative disease that affects one in a million people, known as Creutzfeldt-Jakob disease (CJD).
He died a few weeks later.
“Dad, would you like to solve the worksheet?” I urged. Like when I was a kid and needed help with my math homework. “This week’s problem” for second-year middle school students is our This week’s problem.
But this time the worksheet wasn’t mine. It was his. Homework from a speech therapist. Instead of getting better, his aphasia was getting worse. He started forgetting things quickly. The doctor he once worked with is now a distant memory.
Dad, do you remember your name?
“Hey dad, what’s your name?”
“Mark,” he said. right. good.
“That’s right! What about my name?”
“Mark.” He said it like he was trying to say “David,” but was defeated. There’s no one to prepare you for when your parents look at you and can’t remember your name. They are I chose. The first time I experienced this was a few days earlier, on another beautiful spring day, when I was walking in the park near my childhood home. After he went around the big pond, I asked him my name after being warned that he might not remember. I didn’t see my reflection in the pool. I couldn’t bear the reflexive fear that came back to me.
“No, I’m David,” I stammered. “What is your wife’s name?”
“Mark.” No, again. Rishi. Her name is Lissie. She is your wife who will soon be 31 years old.
“No. What color is this folder?” I asked, irritated.
“red.”
“Yes!” My blue eyes sparkled and met his. He looked at me, but mostly through me. They aren’t completely aware of my presence, but they aren’t missing me either. It’s like being stuck between worlds.
My speech therapist taught me this “red” trick. For some reason (we’ll explore that another time), I asked him what color this red folder was, and he gave me the rationale. Bring him down to earth, no matter where his heart is at this point.
Maybe he’ll get better, I thought every time he got this right. But I asked him the names of things around the house – remote controls, blankets – and we were back to square one. Repeat the name “Mark” or the color “Red”.
his favorite song
“Dad, would you like to listen to some music?” “Maybe Take Five?” he shrugged. I don’t know if he heard my question, but either way it gave us both a break.
Paul Desmond’s “Take Five” is his favorite song. A jazz classic. I scrolled down to the Spotify app and started playing.
The sound of drums began. Then the saxophone appeared and became the star of the show. His father had played professional jazz in the Catskill Mountains of New York many years ago, and he never let anyone forget it. He also played the clarinet in trios with flutists and violinists for decades. He frequently took out one or both instruments for family gatherings like Passover and for informal recitals. These memories were swarming in my mind, the notes jumping around like the plague of frogs.
“Da-da-da-da-da”
hang on.
Was he…singing along? The same guy who couldn’t say my name, his mother’s name, and sometimes his own name, knew the song “Take Five?”
he wasn’t smiling. But he was singing. Somewhere in his brain, he recalled a memory that the CJD prion protein was destroying. I remember playing “Let My People Go” with its unnecessary (but beautiful) jazzy trills during Passover. I remember visiting jazz clubs all over New York City and hearing “Take Five” probably many times. I remember that even though his parents paid for private lessons, he insisted that he learn to play the clarinet on his own, even though he had never practiced.
This time he looked at me. Really to me. How is this possible? Why is this possible?
Did it mean something?
What do you think about “Take Five” now?
I hope it means something. Maybe he’s getting better, maybe the music will give him some kind of shock that will get his brain working properly again. That he can say “David” without hesitation, just like he has for almost 30 years of my life.
I guessed that meant CJD hadn’t completely sucked the life out of him yet. Of course, the rapid decline was in full swing, but it was also happening in slow motion. Moments like these are painful and heartbreaking, melancholy and epic, and terrifyingly true. Dad was dying, but he was still Dad. my father.
After the song finished, we took a break. His eyes went back to where they were stuck. But I filmed him humming. I’m glad I took the photo because I can look back on it now. Do tears sting your eyes? Yes. But here he is, two years later, and I press play on “Take Five” and think of him. Sometimes I hear it all over the world and imagine him humming along. Better yet, jam on that saxophone.
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