‘My Shot’: What It Means to Be a Survivor

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by Nicole Kohr |

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My family and I were finally able to see the Broadway sensation “Hamilton” live on stage at the Durham Performing Arts Center in North Carolina. I’d already seen the pro-shot film on Disney+ and memorized the entire album before that. Still, getting to a live show has been a challenge since my double-lung transplant in 2019, so any opportunity to see one feels extra special.

Whether or not you’re familiar with the historical figure of Alexander Hamilton, there’s only one thing you need to know about him: He was a survivor. I believe a survivor is a person who’s lived through unimaginable trauma, or a person who simply refuses to die. One of the more popular songs, “My Shot,” sung by a 19-year-old Hamilton, is the survivor anthem.

The first lyric that got my attention was, “I imagine death so much it feels more like a memory.”

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I was diagnosed with cystic fibrosis (CF) at age 5. CF is a chronic and terminal illness that primarily affects my lungs and digestive system.

Unlike Hamilton, death was always the last thing on my mind. Apart from the occasional dark-humored joke to cope with my disease, I laughed in the face of death. Doctors told my mother and me that I wouldn’t live to see my 10th birthday. The book “Alex: The Life of a Child” implied that I’d live a short and miserable life. Each respiratory infection came with a warning label about my increasingly short longevity. In short, all odds and statistics were stacked against me, so each battle I won against CF made me feel more invincible. It was hard for me to take the concept of death seriously.

That lyric, however, informed me of Hamilton’s trauma and elaborated on how much he’d been through in his 19 years of life. The need for early maturity and a thick skin prompted an immediate connection with his character.

Thick skin can be a trauma response or a learned coping mechanism that emerges from frequent battles and critiques. I had to develop thick skin to protect my mental health from the rotating door of frightening news related to my body. Having thick skin made daily battles seem less impactful, but it created a feeling of cockiness or stubbornness that I did not intend to carry.

“Only 19 but my mind is older/ … The problem is I got a lot of brains but no polish”

Like Alexander, my pride became my greatest vulnerability. The opening number of “Hamilton” provides a prologue of Alexander’s childhood trauma, including the death of his mother and his premature career launch. So, yes, I do believe he deserved a lot more respect based on his life experience. My worldview was also very advanced for my age, and naively, I was always insulted by lack of inclusion and ageism.

I thought battling a disease like cystic fibrosis earned me a veteran medal of sorts, one that everyone could see. My ignorance about this led to a lot of resentment, and I expended unnecessary energy trying to prove others wrong. And if you’ve ever watched “Hamilton,” you’ll know that fatigue and frustration are ingredients for mistakes.

“I shoulder every burden”

Proving others wrong included earning straight A’s, despite my frequent absences from school. I wanted to win all the awards and star in all the shows. All of this took a toll on my lung function.

In my last column, I wrote about my lifelong fear of being a burden, and how identifying as one inspired me to prove others wrong in the most dangerous way possible: masking my disease.

“See, I never thought I’d live past 20/ … Ask anybody why we livin’ fast and we laugh”

This December, I’ll celebrate my 30th birthday, along with the news that the new median age of survival for a CF patient is 50 years old. Take that, science. On the flip side, talk about survivor’s guilt. I’ve watched dozens of close friends pass away from this terrible disease. After hearing their stories and watching the pipeline of CF treatments grow, I feel like I must achieve something great in their honor. Whether that pressure causes me to fall into an inescapable black hole or to laugh it off as a challenge to defy the odds can only be told with time.

I remember finishing my first listen of “Hamilton” and wondering, “Am I Alexander?” Had I become exactly like the historical figure whose survival instincts led to their demise? No. I will continue to laugh in the face of death, but not at the expense of my family or health. I must continue to shed my thick skin to make room for my newfound transparency, and I shall age into the earned badge that I wore so confidently as a child.

If you have an opportunity to be a survivor or to see “Hamilton” live on stage, do not throw away your shot.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Gisele F Lapointe avatar

Gisele F Lapointe

Kudo to all survivors who defy the odds.

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Mary E Shreck avatar

Mary E Shreck

This is why I call Nicole Supergirl ever since I met her! She is the most amazing, loving, funny young woman I have ever met, not to mention the positive things she brought into my grandson Jared's life! She's educated our entire crazy family!

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