What a museum of the worst day of my life would look like

An article written by Steve Kandell (a Buzzfeed contributor), titled “The Worst Day Of My Life Is Now New York’s Hottest Tourist Attraction,” resonated for me. Kandell’s sister was killed in the World Trade Center on 9/11, and while his piece was primarily a dissection of the newly minted 9/11 Memorial and Museum, what really struck me were Kandell’s pain-wracked words: “Everyone should have a museum dedicated to the worst day of their life and be forced to attend it with a bunch of tourists from Denmark.” The cynicism’s sharp.

However, most of us go through the very worst day of our life without there being any tangible evidence, and that irony is also sharp,  piercing. No monuments. No plagues.  No burning bushes, or comets, or deafening overtures of angels weeping. Mostly, it’s a day when the world is oblivious that your day, your life, feels very much like it is over.

The brain, though, is amazingly adept at recording, down to every last pixel,  the very best of days and the very worst of days. The best we always document, publicly: the birth, the marriage, the sunset, the sunflower. The selfies. The worst is usually private – an anonymous cacophony of sights, sounds, feelings, that we somehow learn to live with.

My own worst day was not a national tragedy. It wasn’t on the nightly news. For the most part, It slipped by unseen and unfelt except to a handful of people. But I could construct a museum to the worst day of my life, as the details are  etched in my brain, and in my heart, permeably.

 

My museum would be quite small, starting with an examination room in Gastroenterology

images

…where, despite months of blood work and medical tests, I had no idea I’d receive my husband’s final prognosis. So while I waited for his endoscopy to be finished, I sat alone pondering, mostly worrying, but never imagining the worst. If it was cancer, we’d handle it. We’d get through the surgery, the treatments etc. the way we always had-together. If it was some lesser disease, we’d celebrate. But the chances were, that like every other exam in the past months, we’d be shipped off to yet another doctor, another specialist, another clinic.

But I was wrong. It was the day we’d find answers. The moment the doctor returned to speak to me I realized, immediately,  it was “that” day. And I was totally alone. But how could a museum capture that moment, that terrible sense of fear and hopelessness?

Nicholas_Nickl

I guess there’d be a theatre, screening dialogue between myself and the doctor
(Nicholas J. Nickl, M.D. Internal Medicine – Gastroenterology)

He’d tell me my husband had an inoperable Stage IV Neuroendocrine Pancreatic tumor, and as the tumor had already spread and wrapped around the portal vein to the liver, the only treatment available now was palliative.

He’d hold a clipboard, and take precisely 10 minutes to tell me that my husband had roughly 3-6 months to live.

He’d ask if I understood what he was saying. And did I understand it would be up to me to tell my husband once he regained full consciousness. Finally, he’d advise that we make the most of our upcoming Christmas.

Flashing across the screen would be ultrasound images showing the insulinoma (Pancreatic Neuroendocrine Tumor), portal vein, and inferior vena.

 

pic_insulinoma_ultrasound1

 

PROGNOSIS.  PALLIATIVE. CHEMOTHERAPY. RADIATION.PROGNOSIS.  PALLIATIVE. CHEMOTHERAPY. RADIATION.

PROGNOSIS.  PALLIATIVE. CHEMOTHERAPY. RADIATION.PROGNOSIS.  PALLIATIVE. CHEMOTHERAPY. RADIATION.

Words rotating on repeat, interspersed with “your life is important to us. Please remain on hold.”

 

I guess this is what a museum of the worst day of my life might look like. Perhaps there would be a hauntingly beautiful  background score illuminating my drive home from the hospital, and the long, lonely, evening in which I waited for my soul mate to awaken. But what room or medium could possibly portray sorrow and despair… a cut to blackness? A sheer silence?

 

I imagine for most of us the worst day of our life is unexpected. It’s nothing like the movies, or the novels that mimic human tragedy.  How we experience it cannot be documented in corporeal space. There simply aren’t the right materials. And I’m not sure if sharing the worst day of my life, publicly, among a universal group of mourners would’ve helped. But I certainly marvel how the world didn’t tilt, didn’t tip, didn’t swing off orbit because, for me,  it had.



Categories: Care-Giving, Dying, Loss, Uncategorized

Tags: , , , , ,

4 replies

  1. Beautifully written. I’m saddened by your post, yet found myself drawn wanting to read more. It must have been a nightmare, I’m sorry

  2. Oh, Nikki, your stunning words have left me without any! Brilliant writing and so, so tragic!

    Hugs from Ecuador,
    Kathy

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