I had lived longer with this disease than anyone these doctors had seen.
I recognized the way he was looking at me, his eyes slightly narrowed. And then came the familiar words: “There is nothing wrong with you.” The doctor, like the others I had seen in my home country Sweden, deemed me a hypochondriac, lazy. I was in my late 20s, I had two beautiful young daughters, a wonderful husband, and still I carried a worry in my heart that never lifted ― the feeling that I was dying.
“But…” I wanted to tell the doctor about the constant pressure on my chest, the difficulty breathing, the regular migraines, the crippling fatigue. I wanted to explain my fear of my girls one day finding me still, trying in vain to wake me up, and I wanted to ask the question I had carried in my heart since childhood: Will I die young? But I didn’t get the chance. “You need to think positive,” the doctor continued. “Time’s up.”
So I went home, like many times before, feeling like I was dragging my body behind me, every step like walking through mud. The worry turned to sorrow: If these feelings continue, I will not live to see my girls grow up. I cherished every moment with my daughters, trying my best to play with them and to read them bedtime stories, so they would remember me.
One day, my husband hurried home from work, slamming the front door as he rushed in, exclaiming: “My boss wants us to move to the U.S.!” I sat on a chair by the stove, too exhausted to stand up while flipping pancakes for our girls. The question in my heart spoke to me like thunder: This is what you must do.
A couple of months later, we had relocated to a small town outside of Philadelphia. Among the tasks we needed to accomplish during the transition, was to get physicals in preparation for obtaining U.S. driver’s licenses. The minute the doctor 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 U.S. 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.
Before my surgery, I wrote letters to my dear husband and our girls. There will be many voices in your life, I wrote to my daughters. People telling you who you are and who you are not. You need to listen to your heart, trust your heart, follow your heart. There you will find your true voice.
This is what I wanted to tell my girls and what I hope others will learn from my story:
Let the whispers of your heart grow into a voice of thunder. Don’t dismiss them, don’t rationalize or diminish them. Let them guide you.
My heart led me to more pain, but also to more beauty, than I ever could have imagined. I barely survived my first open-heart surgery and the surgeons had to perform a second. It took a long time to recover, but I was grateful that finally, by listening to my heart, my heart was healed.
Now I enjoy long walks again, playing and laughing with my girls, traveling with family and friends, and most of all, taking deep, full breaths, without the constant heavy weight on my chest.
My scarred heart is still whispering to me. You need to make friends with your scarred body, it says. You need to accept the years that were lost in a haze of fatigue. I know my heart is right. I need the gratitude to envelop the pain, the loss, and the scars, and I need to see the beauty in the pattern of the strange roads I took that led me to having my life saved in the U.S.
There are many ways to describe these kinds of experiences: intuition, synchronicity, divine intervention, and my particular favorite: a miracle. Yes, I truly believe that when we learn to discern the voices of our hearts, miracles follow.
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