Anything that’s Mentionable is Manageable

January 1, 2021

It’s hard for me to let go of 2020.

I fear letting go because it means letting go of the year I last saw Nathanael alive. Every year now, I have to refer to him in the past tense.

It has taken me most of 2020 to use the word ‘died,’ when talking about Nathanael. The word ‘died’ sounds violent. Young Black men die at disproportionate rates, but his death was not an act of violence or an accident. I oftentimes say “passed away” or “loss.” Words that are less uncomfortable and more palatable. But the truth is: He did die. We didn’t lose him. I know exactly where his physical and spiritual bodies are.

The first time I told someone my brother died was around September. A colleague was convinced they have seen Nathanael somewhere before. I knew this could not be true. So I said, “nope, you couldn’t have, he died.”

The words passing through my lips, while truthful, had felt like a betrayal.

As much as I prayed for 2020 to end, I wanted it to stay. I wanted the time to stand still. I wanted the day Nathanael was awake requesting Starbucks “sick tea” and s’mores Girl Scout cookies to come back.

January 21, 2020, exactly one month after Nathanael’s 19th birthday, his medical team told us they’ve done everything they can do. My brother was no longer a candidate for any further treatment due to his deteriorating condition. All chemotherapy was being stopped. All clinical trials discontinued and that further treatment would be unethical. All treatment going forward was for comfort. I couldn’t understand it all, but I understood enough. Nathanael was dying.

My body shook uncontrollably in my chair. I hugged myself to self-soothe. Dad sat on my left side, removed his glasses from his face, and massaged the bridge of his nose. My older brother sat across the room from me and wept. My mom refused the news. On the inside, my actions mirrored those of family, but I felt my nerves unraveling and all I could do was tremble.

Up until this point, Nathanael had spent nearly a month in ICU battling pneumonia. It was now we were being informed leukemia had come back and it was aggressive.

I walked back to his hospital room held his hand and fought back tears. I told him how much I loved him, as I tried desperately to hide the quiver in my voice and hold in tears welling in my eyes. My pain was merely a drop in the ocean to what he was going through.

It’s an affliction clinging to hope, faith, and reality in the waiting room of a cancer hospital. The families I’d watched in the waiting rooms for the last 21 days were now us. We were now the family that was waiting for a miracle. I passed some the time Googling, “when do medical miracles happen?” I called friends. I talked to anyone that would listen.

On January 30, 2020, Nathanael died.
…
On Christmas Day 2019, we went to see “A Beautiful Day in the Neighborhood.” We sat in the theatre and my mom asked, “Does Nathanael know who Mister Rogers is?” I turned to Nathanael and asked. With his Icee straw to his lips and Buncha Crunch and popcorn in his lap, he shook his head no.

I laughed.

In a later scene of the movie, Mister Rogers arrives at Lloyd’s home. Llyod’s father is dying and no one in the family wants to address the elephant in the room. Mister Rogers speaks gently, “You know, death is something many of us are uncomfortable speaking about. But to die is to be human. And anything human is mentionable. Anything mentionable is manageable. Anything mentionable is manageable.”

Those words stuck as if they predicted a future I didn’t want to accept. AML was always “life-threatening,” but I didn’t want to update the definition when Nathanael’s life was actually becoming threatened by this disease.

I’ll never stop talking about Nathanael’s life or death. And as a family, we’ll get through this. The tears of grief I still shed, even writing this, are tears of love because to grieve is to love. His presence didn’t die with his body.

I hope 2021 is good to us all and I hope that my family’s grief becomes less debilitating. Life is always going to hit hard and how you manage the hard is how you manage it all.

Happy New Year,

Love Krystal

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