When I was 18 years old, I started having strange symptoms: body aches that never went away, a really hard time breathing, and a heart that would skip beats or feel like it was pounding so hard that it would move my entire body. After several misdiagnoses, I was finally diagnosed with end-stage heart failure from a rare genetic condition called left ventricular noncompaction cardiomyopathy. I needed emergency surgery that night to place an Impella to help my heart pump, but it failed. I was placed on another form of life support called ECMO, which would circulate my blood for me.
I was placed on the transplant list as Status 1A to try to get a heart for me as soon as possible. In the two weeks of waiting for my transplant, I was placed on a ventilator because my lungs were filling with fluid. I was dying, and I was dying quickly. I had also sustained a spinal stroke while waiting for my transplant. Finally, I received my heart on March 21, 2022. I remember being rolled into the OR, barely conscious, and being asked, “Do you have any questions before we start?” I asked the transplant surgeon if I was going to die. I don’t remember his answer, only his calm kindness.
When I was a kid, I was kind of shy, more of a quiet observer type. It wasn’t that I never had anything to say; it was that I was afraid of how I would be perceived. I never really knew what I should say. I kept my words safe inside of me for most of my life. In the two days after my transplant surgery, I would not speak or write notes. The words were once again stuck inside of me, just as they were when I was a kid. I knew I wanted to say something; nothing could encapsulate what I was thinking.
In the beginning months after my transplant, everyone told me I was lucky. But I was stuck at this strange intersection of not knowing the magnitude of what I survived, not knowing what it meant to be lucky, being so immensely thankful to be alive, and questioning why everything I thought I had planned for my life had been turned upside down.
After being intubated for a while, my voice sounded foreign to me. I have never been a good or strong singer, but my hum became breathless.
My laugh had always been loud and sometimes obnoxious, but when it fell silent, I quickly realized I missed it more than anything. I had a new body that I didn’t recognize and a new rough idea of a life plan that did not yet feel like my own. There was one night, soon after coming home from rehab, when I was taking my vast number of nightly pills, and I broke down crying.
My family looked at me like I was crazy at first; I think they were trying to understand how the feeling of luckiness could be overpowered by another, more complicated feeling—grief. As someone who always loved the freedom of no structure, I felt so exhausted by having to follow this new, strict routine.
I had this deep feeling in my soul that every cell of my being had changed—that I would never walk again, that I would never just go back to who I was before. It posed a new question: What if I was always meant to end up this way? What if I was meant to have a new laugh and voice, a new perspective, a new body, a new future?
What if this would teach me how to say all of the things I feared saying for my entire life? What if it is actually better that I cannot go back to who I was before? I did not want it all to mean that what happened to me was cruel or unfair. I desperately wanted to shake hands with my grief, call it a truce, and somehow live in peace with its shadow so that it would not dim my life forever.
I began unpacking everything that transpired leading up to my transplant. I wanted to take it all apart piece by piece to inspect it, to try to understand the luckiness that found me. My sister had taken detailed notes throughout my arrival at the hospital, all the way until the week after my transplant surgery. She and my mother saved all the notes I wrote while on a ventilator, when my writing was barely legible at times. I vividly remember being frustrated while writing each one because the words never came out the way I wanted.
From all the pain and sleep medications I was on, I didn’t know how to write normally—some letters and words were so tiny or squished together that they made no sense. I read them so many times that the memories etched themselves into me. Reading that your family was told to make death plans for you if a heart didn’t rescue you in a few days is something you can never forget.
The memories of the ICU tug at me sometimes, and I often can’t tell if it is from the fear that some imaginary clock is ticking against me or if it is because I feel I haven’t thanked that room enough. It can freeze me for moments in time, holding me hostage. I wake in the middle of the night after having dreams of memories I try to suppress in my waking life—the ones that are too staggering to face.
Though there is something else I read in my sister’s notes, which she wrote the day after my transplant surgery, that has not left me either: “I’m sitting in the chair in the sky lounge and don’t have to sit and wonder if Carrots will get a heart or not.” If for no grander reason than living another day where my sister calls me Carrots, living another year where my mother squeezes my hand during quarterly bloodwork tests, or laughing my new laugh with my best friends, I think it is still worth it.
As I write this, the geese are loudly migrating over the Lehigh Valley in Pennsylvania, where I live. I wonder if they are flying back to places they feel they did not thank enough—if they are driven by their memories too. I think about the woman who saved my life. I tell everyone about her, even strangers. I tell them how she is the ink of my name when I dot the “i” in Caroline with a heart. How I carry her like a second soul. How she finds me in every poem I write at 2 a.m. I wonder a lot about my lucky Penny—if her spirit returns to those thankful places, to the creek or grass barefoot.
If she could be out there on the clouds the geese are flying under, arms outstretched in fields of cotton sky. If she had a clear view of the last full Blood Moon in March 2025 and thought that it looked like the magnificent heart, she gifted me.
Most days, I wake up with the sun shining in my eyes, and occasionally I wish my blinds would close tighter, but I am reminded of a random quote I read online: “I opened two gifts this morning; they were my eyes.” I believe the third gift is my heart, beating with me, no matter the fear that creeps in or the memories that feel like a confusing illusion. I say that I am lucky, and I feel that I am.
