‘When I Grow Up’: Aging With CF Is a Gift

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by Nicole Kohr |

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The song “When I Grow Up” helps open the second act of “Matilda the Musical.” The show, which ran on Broadway, is based on the book by Roald Dahl and includes a handful of dark plot devices that the 1996 fantasy-comedy film version does not.

The children of Miss Trunchbull’s school, Matilda included, are gaslit by the adults in the story. In the song, the children express their desire to grow up because, in their minds, all their problems will resolve when that happens. I realize these lyrics are meant to be naive, but I agree with them.

“I will be brave enough to fight the creatures”

In my eyes, creatures look like germs. I see them everywhere, just as I did when I was a little girl. But adult me is brave enough to fight them. I keep an eye on the chip bowl to see which fingers grazed which chip. I hover over bathroom toilets like a genie, and I mask up no matter the occasion. Regardless, adult me is tired of battling the creatures.

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It’s the same reason I roll my eyes at the self-deprivation associated with aging. My fellow cystic fibrosis (CF) patients and I have had to accept the fact that our lives will be shorter than our friends’ due to an overpopulation of mucus and infection. Creatures like Pseudomonas, a bacterium that plagues CF lungs, pose a threat to the gift that is aging.

I can’t relate to a mindset that casts aging as bad. Every birthday and milestone feel like a spiteful middle finger to “the man,” and I rejoice in those moments.

“I will be tall enough to reach the branches/ That I need to reach to climb the trees/ You get to climb when you’re grown up”

I only achieved a height of 5 feet, but this quotation is still sweet. It suggests kids can’t climb trees while adults can, but also hints at a larger question: Why would adults climb trees? Most adults I know, myself included, hesitate to climb trees because we have more to lose if we fall.

Similarly, when I was little, I wanted to be fiercely independent and administer my treatments myself. In time, I knew how to do everything, including access my own port, which is a medical device that’s placed under the skin in place of traditional IVs.

Thankfully, my willingness did not mean that I did it all myself. My mom was always there to schedule my appointments and communicate with my doctors. She prepped and cleaned my treatments, paid for every bill, and stayed by my side wherever I fell ill. Now, that falls on me.

Being fiercely independent with my routine is rewarding, but exhausting. Sometimes I wish I could revert to my youth, when I had the drive to be independent.

“And I’ll play with things that Mum pretends/ that mums don’t think are fun”

This speaks to the unwritten rule that children should play with toys and adults should not. Apparently, I broke the rules. Like Matilda, life granted me a maturity that I wasn’t supposed to have until much later in life, and adult me is spinning her wheels to make up for my lack of carelessness. I had plenty of nursing experience under my belt by age 12, so back then I wanted to talk about funerals. Making small talk with a fellow 12-year-old required studying on my part.

Studying aside, people my age never understood my struggles. Some friends’ reactions to the news that I had CF were serious, a trait that plagues old souls, especially the handful who saw my CF journey up close. However, their empathy didn’t come until much later. My other relationships just became awkward. They treated me like their mom’s friend, a billboard for a cause, or as if I were made of glass.

“And I won’t burn ’cause I’ll be all grown up”

In my case, let’s assume burn means “be outcast,” a fear I’ve repressed since childhood. Parents, directors, and teachers made better conversation and never left me feeling burned.

Only recently did I work up the courage to dip my toe in the millennial social pool again, and I was pleasantly surprised. Casually dropping the fact that I have CF or that I have brand new lungs hasn’t resulted in a burn — just stories. Aging colleagues are more acquainted with trauma and can offer an empathetic hand to hold without placing awkward barriers between us. It’s a relief.

Being an adult has its disadvantages, like stress and responsibility. Achievements energize me while independence exhausts me. At least I can reap the benefits of adult friends who have their own baggage. It means my chronic disease is no longer a red flag. Instead, aging is once again a gift, and I hope I remember that when I grow up.


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

Paul & Debbie avatar

Paul & Debbie

I couldn't agree more, ageing is great! Not only for the middle-finger feeling you talk about, but ageing is Living!
I have two quotes I would like to share that I recently encountered:

One I found in the master piece of the German philosopher Martin Heidegger (1889 - 1976), that I am currently reading: "Sein und Zeit" (Being and Time - 1926)). It says:

"Sobald ein Mensch zum Leben kommt, sogleich ist er alt genug zu sterben".

Translation: "As soon as a human comes to life, so soon he is old enough to die".

And the second one is from the Irish comedian Dave Allen (1936 - 2005):

"I don't mind getting older, considering the alternative. I look forward to be looking back on my old age".

Cheers Nicole, keep up the writing, you do a fine job! We enjoy your take on life very much.

Paul

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