Hallelujah

By Jayesh Sharma

I’ve gotten used to the scene I walk into: softened light illuminating a twin sized bed filled to the brim with stuffed animals interlaced between IV drips and ECMO cannulation tubing. She lays in the midst of a sea of blinking machinery and circulating blood. In her conscious moments, she’s always made sure to smile or make a small joke, as if daring the universe to try and faze her ebullient will.

I’m with Alondra today. She’s a sweet kid, all 11 years of experience packed in between what she calls her own mechanical disco party. She’s been in our neurocritical care unit for 7 months after being diagnosed with an advanced brain tumor.  

Her family is gracious. When a child stays with us for longer, you get to know them and their cherished ones in a unique intimacy; there are fewer relations more pure than those forged within heavy suffering. I’ve been leading continual monitoring research which allowed me to meet with them the most consistently out of the clinical team. At some point, they began to include me in ways that only those at their lowest can. From small things, like getting each other coffee for the long nights, to exchanging stories of how Alondra reminds me of my own sister, and the range of their family’s embrace became extended. 

Her dad is the strong sort of gentle; her pain is as visible on his eyes as a storm’s first downpour. Her mom is the resolute kind of emotional; one that sustains that same storm without paling. Her brother is the kind of kid you root for, standing by his sister as if his presence is all that’s holding her together.

In her active moments, Alondra always spoke about her grandmother. How she always brought Alondra treats in purple (Alondra’s favorite) from Mexico. How she dresses in simple elegance, drawing the room towards her with raven-black nails extended. As those eyes are drawn, how her voice can still hear every other movement. I only fondly smiled along during these mentions, within the idealization children can hold.

It has been an emotional few days. Now, Alondra has gotten worse. She is barely aware, under a sea of tubes, antihistamines, and purple blankets from home. She was moved from steady improvement to critical care, and everyone around her has suffered as she has. Standing by her stricken parents and holding her confused brother’s hand, I saw someone enter the room. I knew who this was before I could even process the light purple dress and black nails. Everything went quiet. In a moment where the only sound was the soft beeping of the multiple instruments around Alondra, her grandmother, eyes shining, began to sing.

It was a soft kind of Spanish. In the neighborhood I grew up in, Abuela Rios used to scold us with the same. With a lilting tone, she would tell us we shouldn’t be tan traviesos while gesturing us towards her warm empanadas. Each word felt familiar; at some point, I realized she was singing Hallelujah, just not in a way I had ever heard. Alondra, in a time where her heart rate had been erratic at best and frighteningly still at worst, seemed to calm. Her grandmother’s words seemed to carry through the entire room, as if a river drowning those who couldn’t feel the puddles forming at their feet. By the end, her son had joined, matching his gravure tones to her exquisite ones, their streaming tears a mark of what they shared.

As she finished, we all stirred, as if from a trance. I could’ve stood there for decades and still not fully understood the river which had left as soon as it came, leaving only dried patches as proof of its wake.

…

Sometimes I forget why.

Why I do what I do. Why I want to push my limits, even if I don’t know what the next steps beyond those limits entail. Why I never seem to feel satisfied with myself and who I want to grow into.

Being around Alondra, her gentle father, her storming mother, her protective brother, and the pure grace of her grandmother, I saw the truth.

The Why is a lie we tell ourselves to tear down what we need to do to get to it. There’s no guarantee we ever find it, but the truth lies in our pursuit of it. It lies in finding ourselves within the moments we can truly embody being who we’re supposed to be.

Eventually, we woke up. The nurses started talking, Alondra’s family huddled around her, but I remained still. My Why was right there, caught between Alondra and her grandmother’s words. Words which transcend simple language and emotion, carried into a current I could only hope to grasp onto the edge of. Within the whispers of her words which carried from loving, hurting lips, were the truth of my Why.

I belong here; being in those moments and holding these private moments in the highest regard. Whether I’m guiding the river or simply along for its course, my truth is staying within it; my Why lies in doing everything in my power to allow the moments Alondra and her family cherish to continue growing. Their family deserves as much time as I can help provide them. In a way, Alondra and her grandmother have that truth within their relationship. Their Why is a pure thing, one I need to cherish, protect, and allow to grow in every way I can. Eyes shining, swaying as her dress did, her grandmother was purely who she was, an ideal I want to pursue every moment I hold.

She sang it in as many words as it took. Hallelujah. 

Jayesh Sharma is an MS1 involved in breast cancer and neurocircuitry research, while also working in a mental health clinic. He is working towards becoming a neurologist commited to understanding and progressing critical care. When he isn’t working or writing, Jayesh loves climbing, dancing, and reading with his younger sister.

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