I grew up in a small town on the ocean in the south of Sweden, but both my parents come from long lines of “Norrlänningar” or “Northerners”. Northerners are known for their silence, for never speaking a word more than they need to, and that word might very well be a simple drawing in of air, like an inverted single whistled note. This is not really a word at all, and can mean anything from “yes” to “maybe” to “I totally agree” to “You don’t say” to “I can’t believe it!”

I remember when I was young, asking my dad a question and then waiting and waiting for an answer that never came. After a while I got mad and stomped to my room, thinking he ignored me. How surprised I was when he found me later and delivered the answer, long after I’d forgotten about the question!

My love for the written word was nurtured by this inherited silence. In school, my teacher told me: “Speak up, Lene, or we can’t hear you.” While spoken words came to me with difficulty, written words danced lightly as feathers on the page. I loved to read and made weekly visits to our small town library, the bicycle ride home always wobbly with the heavy pile of books on the rack. My rides were accompanied by something else: a strange pressure on my chest, a lingering heaviness when I breathed, pulling the damp ocean air into my lungs as I pedaled down the cobblestone streets.

Even at a young age, I felt a sense of urgency. Like I wouldn’t live long and needed to live life to the fullest every day. Maybe this made me notice small things: spring flowers by the side of the road, the way my grandmother brushed away people but secretly longed for hugs (I hugged her every time I saw her), how trees seemed to shed tears when the snow melted. I started to scribble down poems in my small notebook and dreamed of one day holding a book in my hands with words in it that came from me, something that would perhaps last after I was gone.

Growing up, it became an increasingly burdensome task to navigate around all the accumulating things I couldn’t do: dance, sing, take the bus, go to places that required climbing stairs. Later, I joyfully but with difficulty, gave my remaining strength to a wonderful husband and two young daughters. For by then we had realized I would never be able to get that university degree I had been studying for (the classroom was on the second floor and there was no elevator) and we politely declined most social gatherings, since unnecessary interactions just took too much out of me.

It became excruciatingly apparent that I was dying—the pressure on my chest, the difficulty breathing, the debilitating fatigue, the migraines—even though I was only in my late twenties. I visited doctor after doctor, but they only told me I needed to “think positive”. Reading and writing were among the few things I had strength enough to enjoy and they became my refuge.

And then everything changed.

My husband’s employer offered him a position in the US, and they needed him urgently: within a couple of months we had relocated to Radnor, a small town outside of Philadelphia. We’ll have a fresh start, we thought. We’ll be happy here. The paperwork involved in the relocation was overwhelming, my husband spent many nights sorting through insurance policies, bank accounts, social security numbers. And then we needed to get physicals before obtaining new driver’s licenses.

I was happy to see a female doctor, which had been a rarity in Sweden. But I didn’t dare tell her of my symptoms, for fear of hearing that familiar label, “hypochondriac”. But the minute she put the stethoscope to my chest, she said: “This does not sound normal”, and she sent me to have an ultrasound of my heart.

It turned out I had a fatal congenital heart disease. It turned out I had lived longer with this disease than anyone the US doctors had ever seen. I had finally been given the words of my condition. It was a relief and a nightmare at the same time. Within weeks I was scheduled for open-heart surgery.

When I think back on what followed I am filled with such awe, humility and gratitude, that I can barely find the words. Never have I experienced more pain, or more beauty. The closest words I would choose to describe my experience is a miracle. A miracle that changed the way I looked back on my entire life. The years of pain and doubt shifted shape and became something else. A Beautiful Affliction.

I needed to sort through and understand the events leading up to my life being saved on another continent, so I started writing. There was really nothing else to do. Sometimes the stories you need to tell own you so profoundly that you can do little else than wide-eyed watch them unfold on the paper. Words shaped by memories; of faded childhood photographs, shy smiles, two small girls playing with their dolls on a blanket in the backyard. Stories grown out of the love of a man who made it a sport to do the laundry and the dishes before I did, fear of not waking up the next day, desperate prayers while kneeling down in the snow, miraculous answers to unspoken questions, heavy, inherited silence. It is like looking at a snow globe, but instead of glass, the stories live within the pages of the book, not silent anymore, but filled with all the noise and the clutter and the mess that make life beautiful.

This post originally appeared on Terri Giuliano Long's blog for A Week With Lene Fogelberg. To read the first chapter of Beautiful Affliction, beautifully illustrated, visit Terri's blog.

Lene Fogelberg is an award-winning poet and a double open-heart surgery survivor. Born in Sweden, she has lived in the US and now lives in Asia. She Writes Press will publish her first book Beautiful Affliction, A Memoir, on September 15, 2015. It is available on Amazon and Barnes & Noble. To learn more, visit her website: lenefogelberg.com, Facebook author page, Goodreads or Twitter.

* This post was originally published in September 2015.