From Our Readers
November 07, 2014 7:13 am

I suppose I always had an inkling there was something slightly different about my childhood. Aside from growing up on an island, a perpetual water baby whose life goal was to be a mermaid, who scaled mango trees and palm trees for after school snacks, there was just something a teeny tiny bit unusual.

First, my parents did this thing, they called it chest physical therapy. It consisted of cupping hands, and clapping over various parts of my chest to shake up the heavy mucus in my lungs. I called it torture, they urged me to think of it as “the only mechanism we have to keep you healthy, my dear” as I performed my predictable nightly routine of whining, then hiding, then occasionally feigning tears for dramatic effect, all to no avail, the chest PT would happen, and it would happen every single day for the next twenty-odd years.

If only I knew.

My mer-parents also never did show up to claim their long lost daughter, so really, if I had less of that wonderful sunny childhood optimism, I might say that I was in for a few let downs.

Also, the cough. Oh my, the cough. It was a powerful, old man hack coming out of a tiny girl’s body. It went along nicely with the scar on my belly, “a decoration” that “added character” I proudly announced to anyone who glimpsed my belly in my pink ruffly bathing suit, and the fingernails which had just a slight curve to them, unbeknownst to me at the time, for what five year old pays attention to their nails when there are beaches to explore! Trees to climb! Iguanas to chase out of the bedroom!

As it turns out, at just twenty-five years old, I found myself in an uncomfortable situation that perhaps my parents predicted would arise one day, some day far off in the future.

That day crept up quickly, and one day my body moaned, groaned, and announced, you, my dear friend, will need a lung transplant soon. I suppose I should also say that I always had an inkling there was something slightly different about my adulthood too.

Diagnosed with cystic fibrosis at birth, and blissfully unaware of what it meant for my future, I spent years chasing after softballs in the outfield of this field or that one (not my greatest talent), attempting ballet and realizing that grace and posture were not my most innate skills, mastering the classic Andy Williams/Perry Como/Bing Crosby Christmas songs and serenading/crooning for anyone who would listen, in December mostly, but also occasionally in May, June, July. . . CF was not a factor aside from just being something I had, something I dealt with, just like the mop of hair on my head that I battled daily, it was what it was, despite my best efforts.

As a young girl, I had secondary dreams on the off chance I never did develop the ability to breathe underwater, and I set my sights on scaling mountains, opening a small book store that also served tea, and maybe designing a house from the ground up. I loved to write, and planned on getting a masters in literature, “from Harvard!” I would say, not really knowing what Harvard was, or where it was, just that it sounded fancy and was always spoken of in “that tone.”

Life had other plans, as it usually does, and fast forward twenty years, and there I was, a little uncomfortable, as the heated blankets that sounded like a good idea at the time, were suddenly just hot, and the paper thin sheets rumpled and sweaty beneath me.

I saw my hand, with the slightly curved nails, and the pale fingertips, signing my name, and I knew that it was a hand connected to my arm, connected to my body, yet the whole situation was too surreal to fully, in the moment, process.

With that signature, essentially, I was saying, “Permission to perform a double lung transplant, granted. Proceed forth with the utmost caution and delicacy, as I am rather fond of living, despite my own lungs inability to keep doing so.”

So there I was, not a mermaid, no longer an island girl, no longer dripping mango juice on our kitchen floor, but a young woman on a stretcher, in a gown, with a parent on either side, in the middle of a city, signing my life into a surgeon’s hands.

I have never felt so tiny and small, and aware of my fragility as a human being.

I am now a year post double lung transplant.

And if I may say anything, it’s that I learned a few things after spending nearly a year prior to the transplant being in a perpetual staring match with my mortality, unsure at the time who would win, and all the while growing a bit weaker and a bit more breathless each day.

Life is short, and while yes, inherently we know this, it took my life coming to a screeching halt for me to fully comprehend how precious and fragile and fleeting our lives are.

I spent many, many months attached to an IV pump and a handful of chest tubes keeping my pesky right lung inflated while I waited for news of donor lungs, and thus I had much time to contemplate life, and I came to a few conclusions.

Healthy is beautiful. I can now attest to this fully, as I am wonderfully healthy for the first time, and while I have packed on pounds and have lovely chipmunk cheeks – gifts from the steroids needed to keep the new lungs going strong – I have decided that I am more beautiful than I ever was pre-transplant. Not because I woke up with new lungs and an overinflated ego, but because I can breathe, and laugh, and dance and sing, and I am alive, and that, that, is beautiful.

I’ve also learned that I do best when I’m able to sit with what life tosses my way, and process it as it comes. I had no real choice but to sit in my hospital bed, or sometimes the chair next to the bed, (so many choices, what’s a girl to do) so facing the reality of my situation was nearly impossible to avoid. While I at first resisted, because I am stubborn and tend to initially resist any and all change, the only real constant in life, I am grateful I learned to get comfortable being uncomfortable.

Growth and progress as a human being is impossibly tough at times, and I’m still hoping for an invention that allows instant consciousness and personal growth, but alas, until then, it’s hard work mentally, and we’re the only ones who can do it. But with each wave that washed up, I managed to float a little easier, and I can now say I have survived, mostly unscathed, still fairly sane, only slightly wet and bedraggled, and covered in seaweed.

My parents, too, deserve a word or two, or a novel, or a miniseries. I’m fairly certain I would not have survived the year of waiting, and the year of recovery, and all the life before, during and after, without their support, humor, love, and burrito deliveries. For who else but the amazingly selfless creatures we call parents can manage to sit by and passively watch their child’s health deteriorate, and never flinch, or waver in their support, and still manage to roll their eyes when I was overly dramatic (that time I cried hysterical tears about a plate of rice, for instance) and sneak in late night bowls of homemade apple crisp to my hospital room, just because everyone, sick, healthy, it doesn’t matter, needs apple crisp with double crisp topping sometimes.

Going back to my previous sentiment, my parents are huge fans of my weight gain, as they think I finally look like their healthy girl, and will hear nothing of my occasional complaints about stretch marks, puffy cheeks, and how none of my pants fit anymore. I am lucky to have this beautiful source of love and support and encouragement, and a constant positive reminder that beauty is internal, and nothing is more beautiful than a strong, healthy daughter.

And lastly, I hope everyone can find something to be passionate about. Maybe it’s gardening (I am the proud mom of a gardenia, named Gardenia) or planting an edible herb garden. Or music, whether it be soloing on your air guitar or being an actual concert pianist, or just hearing a song and feeling it so deeply that you have to listen to it over and over again because something about that melody hits your soul. Or perhaps it’s accounting, or practicing law, or running, or brewing the perfect cup of coffee. Perhaps it’s just sitting on the sand while watching the sunset, being in awe of that beautiful, large body of water that is so wonderfully, mysteriously vast, we can’t help but be reminded of how so very tiny we are in the grand scheme of things. Whatever your passion, whatever makes you smile and your heart sing, follow it, doggedly, because, as I said, simply, life is short. It’s precious and fleeting.

I am almost one year post transplant. I can now take the stairs again, and walk up hills. I have returned my supplemental oxygen and no longer have an IV pole as a dance partner. I can laugh and sing without wheezing and stopping to catch my breath. I am finally embracing my slightly different life, and realizing that while it may be an odd life, and wildly unpredictable, the best ones always are.

Renu Linberg lives in a tiny New England town, spends far too much time with her head in a book or in the clouds, and plans to see the world eventually. You can find her stargazing, or eating chocolate, or eating chocolate while stargazing. In the rest of her spare time, she’s learning to breathe.

(Image via Shutterstock)

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