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[SWP: Behind the Book] Writing My Way Out of the Silence
Written by
Lene Fogelberg
October 2017
Written by
Lene Fogelberg
October 2017

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.comFacebook author pageGoodreads or Twitter.


* This post was originally published in September 2015.

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  • Lene Fogelberg Writing

    Thank you Diana, I hope you will like it! Happy to be pub sisters this fall! <3 

    Thank you again Mary Ellen! Your review is now quoted on my Author page on Facebook! <3 https://www.facebook.com/LeneFogelbergAuthor

  • Diana Y. Paul Writing

    I re-read your post, Lene, after reading MaryEllen Latela's review--I truly look forward to reading your memoir and also your account of medical practices you faced!  Best of everything!

  • Lene Fogelberg Writing

    Dear Mary Ellen, oh my goodness!!! Many, many thanks for your kind words and amazing review of Beautiful Affliction! Your wonderful description of my book brings tears to my eyes! The lines: "...the old tradition, for women, of knowing you are ill, but if the docs can't find a diagnosis, they tell you it's hypochondria." and "…worth the tears and sorrow for the joy and hope", moved me deeply and I feel I need to share this on my facebook author page, since they capture my story in a profound way. Thank you again for reading my book and for sharing your thoughts and feelings in these wonderful reviews!

    She Writes is such an amazing place to create friendship and share our common interest in stories and writing. I'm looking forward to more discussions on writing and life my friend! With love, Lene 

  • Mary Ellen Latela

    Dear friend Lene, thank you SO much for the beautiful gem of a memoir.

    See my reviews at: https://www.goodreads.com/review/show/1395970109

    Mary Latela's Reviews > Beautiful Affliction: A Memoir by Lene Fogelberg (Goodreads Author)

    I joined SheWrites and immediately brushed shoulders with Lene Fogelberg, author of the rich emotion symphony called Beautiful Affliction. I understand the old tradition, for women, of knowing you are ill, but if the docs can't find a diagnosis, they tell you it's hypochondria. It is frustrating to read about Lene's struggle - understanding she is not well, but unable to get anyone to investigate what turns out to be a life-threatening heart problem.

    Lene's prose is like silk, swirling back and forth from her meeting with spouse Anders, the terrible weakness after giving birth to two beautiful daughters, and finally, in Pennsylvania, connecting with a friend whose husband is a cardiologist, who helps to find the best surgeons to undertake her surgeries. The use of darkness and light is perfect ... slipping in and out of hope .. hanging on for the girls ... determined to finally speak the truth, to say, "I am in pain!" I am eager for more, and I believe Lene is a (literary) friend now with whom I share the writer's life. It is a difficult read, particularly I believe for Moms, but more than worth the tears and sorrow for the joy and hope which undergird this strong memoir.

     Check out the review on amazon, too, at  https://www.amazon.com/review/R3LVFP5GEEJ39N/ref=pe_1098610_137716200_cm_rv_eml_rv0_rv

    Best wishes to you as you continue to walk the healing journey and to write your novel in Indonesia. Mary Ellen 

  • Lene Fogelberg Writing

    Thank you Carol for ordering my book, I hope you will like it! And you are right, in my experience creativity definitely helps us heal. Your writing project sounds interesting, wishing you all the best, Lene <3

  • Carol Kurtz Walsh

    Hi Lene, Congratulations on your new book.  What an inspiring story.  It also parallels what I am writing about -- how creativity helps us heal.  Your writing did that for you.  I have ordered your book, and look forward to reading it.


  • Lene Fogelberg Writing

    Thank you Mary Ellen for your kind words, they mean a lot to me. <3

    Thank you for sharing Wendy, that is so interesting, that most women in your writing workshop felt they had been silenced! And I totally agree -- "Positive Thinking" nearly killed me! I have found that a healthy "Positive Realism" has been much more helpful in my life. :) Thank you for your contagious enthusiasm for my book and my story, Warm Wishes, Lene <3 

  • Wendy Brown-Baez Promoting

     "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." These are the stories that also impact and change readers. I taught a writing workshop at a women's retreat recently and the women mentioned their dreams of writing-- how they were not achieving those dreams. When we wrote on "what holds me back" almost all had a story about being silenced. I think of your fear of being labeled a hypochondriac when you had a serious ailment. I find a similar story in the new thought community: just think positive, don't give the negative any energy (true that we must have a positive vision and yet not helpful when there is really something physically wrong!) Happy to know you were diagnosed and you used writing as a way to share your story and that you were persistent in getting it out to the world. I look forward to reading your book.

  • Mary Ellen Latela

    Lene, just to let you know, I am reading your Memoir slowly because it is so rich and deep. Thank you for sharing your journey.

  • Lene Fogelberg Writing

    Thank you Tracy!! And thank you for cheering me on along the way, I appreciate it very much. <3 

    Yay Rita! Thank you!! And thank you for also cheering me on, and for welcoming me when I joined She Writes and giving so much valuable advice along the way. <3 

  • Tracy Slater

    Wonderful!! Congratulations, Lene!

  • Rita Gardner

    OK, Lene - you're officially launched!!!  May the literary gods shine on your wonderful book!

  • Lene Fogelberg Writing

    Hi Ellen, thanks for ordering my book! I remember Merion, not far from Radnor indeed. Wow, must have been a great place to grow up, I just love these small towns along the Main Line.

    Happy to be pub sisters! Can't wait to read your "Just the Facts"!

  • Ellen Sherman

    Lene, this is such a moving story, and stunningly told. I'm so looking forward to reading your memoir, which is due to arrive at my house on Friday. And by the way, I grew up in Merion, PA -- not very far from Radnor at all.

  • Melanie Holmes

    Mary Ellen - I love what you wrote about your mother.  Also, you and my sister share a name. She dropped Ellen once she got to junior high, but the family all still calls her Mary Ellen. I sooooo agree with you about silenced voices of women..which is why I wrote my book, The Female Assumption, dedicated to my own daughter. I wanted to educate her, and let her know that I don't expect her to follow my footsteps (motherhood), it was my choice, but many women have different goals/aspirations, or find they cannot achieve motherhood, and so much of our media touts the "Successful Woman" as the one who "has it all."  Anyway, just wanted to give you a shout out. xo

  • Lene Fogelberg Writing

    Thank you Mary Ellen for sharing about your mother, very interesting and so well written, I feel like I am getting to know her. And you are so right, taking care of ourselves is a struggle, thank you for the reminder. Sharing our stories definitiely brings us together, I agree!

    And you already got my book, I do hope you will like it! Thank you for your kind words and for the beautiful flowers! How did you know I especially miss the chrysanthemums in September, living in Indonesia! Such wonderful colors. Love, Lene

  • Mary Ellen Latela

    I almost forgot the flowers... chrysanthemums .. I didn't grow them, but I love their audacious beauty. Mary Ellen

  • Mary Ellen Latela

    Lene, here in the U.S. in my mother's generation, it was expected that women would be silent, unless directly spoken to. Anyway, that was their training, except that when they began to understand that the world doesn't change UNLESS you speak up.... you little by little decide to say something .... write or draw or whatever brings out the light inside you. For my mother, it was for the children ... later on, she began to take care of herself. And this is what I think God asks of us ..."Love your neighbor as yourself..." Taking good care of ourselves is sometimes a struggle.

    I have your book now... it's on my Kindle and I have read the introduction and plan to sit down with it later today. How courageous to tell one's own story ... I think it links us with one another, do you agree? Best, best wishes, Mary Ellen

  • Lene Fogelberg Writing

    Thanks so much T.O. Weller! Your words resonate deeply with me as I think back on my different "silences" and the times (many!) that I have been angry and frustrated. But, eventually, as I learned to see where my silences took me and the beauty that emerged, especially in my life-saving miracle, I think I have grown more humble and grateful. Thank you for reminding me and for the well-wishes! <3

  • T.O. Weller

    Such a beautiful article to introduce what sounds like a beautiful story. I can't wait to read it.

    I can't help but reflect on the multitude of ways we are silenced throughout the course of our lives, and how we so often feel angry, frustrated or rebellious in the face of it. I love how you've turned that around and made silence the pivot out of which beautiful words were born. 

    I hope you had a great "pub day"!

  • Lene Fogelberg Writing

    Thank you so much Diana! <3 So happy to be pub-sisters this fall! 

  • Diana Y. Paul Writing

    This is such a stunning account of how you switched the whole paradigm (attitude; feelings; thoughts; planning) in the face of what could have been insurmountable defeat.  Can hardly wait to read your moving account of living and loving!

  • Lene Fogelberg Writing

    Thank you so much Liz! And thanks for advice you have shared with us new SWP authors! 

  • Liz Gelb-O\'Connor

    Lene, What a beautiful article. Wishing you the best of luck on your pub day! 

  • Lene Fogelberg Writing

    Thank you Stacey for your kind words and for the well-wishes, it means a lot to me! xoxo