A routine EKG at my annual physical was supposed to be uneventful. Instead, it ended my marathon career.
This past winter, I was diagnosed with arrhythmogenic right ventricular cardiomyopathy (ARVC), a rare inherited heart disease associated with ventricular arrhythmias, sudden cardiac arrest, and an increased risk of life-threatening events during intense endurance exercise. I had no symptoms. No warning signs. I felt like the healthiest version of myself. Yet suddenly I was being told I had to give up running.
In the months since my diagnosis, it feels as though I have lived a lifetime. The week before my appointment at Johns Hopkins, I stopped running for four days (something that felt both unnatural and desperate), hoping it might somehow make my cardiac MRI look normal. On Friday the 13th, at 5:30 in the morning, I lay motionless inside the scanner, convincing myself everything would be fine.
By the time I walked into my appointment with Dr. Hugh Calkins, the results were already available. My husband, a radiologist, and I clung to the one reassuring detail we could find: My right ventricular function appeared normal.
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Then everything changed. A genetic counselor entered the room and told me my heart showed the classic findings of ARVC. There it was, final and undeniable. Not in a sudden, dramatic way, but in a quieter, more permanent one. The kind that follows you into everyday moments and changes how you see yourself.
The grief did not arrive all at once. It still hasn’t. Denial started weeks earlier when I first heard the diagnosis at Northwestern, the same institution where I trained as an anesthesiologist. I pushed it away, convinced there had been a mistake. I flew across the country looking for someone, anyone, to tell me otherwise.
Then came numbness. Then bargaining. How much can I still run? Could I do just one more marathon? Even as I asked the questions, I think I already knew the answer.
When Dr. Calkins responded, “That’s a terrible idea,” the words landed harder than I expected, not because they were harsh, but because they were final. He reminded me how fortunate I was. We had caught the disease early. I didn’t need a defibrillator. I didn’t need a transplant. I could still expect to live a long life.
But I had to let go of running. That was the part that broke something in me. Because running wasn’t simply something I did. It was part of my identity.
Before I was a physician, before I was a wife or mother, I was an athlete. As a youth soccer player, I trained at Olympic Training Centers and competed at the state and national level. I began running to stay in shape for soccer, but eventually running became my sport. It carried me to a scholarship at Notre Dame, a spot on the Fleet Feet Chicago Elite Racing Team, more than twenty marathons, and subelite starts at both the Chicago and New York City Marathons. For decades, athletics shaped how I understood myself.
So who am I without it? That question has followed me everywhere. I’ve reached out to former teammates and coaches, people who knew that version of me, hoping they might understand this loss in a way others cannot.
I remind myself how fortunate I am. My children are healthy. My genetic testing was negative, sparing them from inheriting the mutation most commonly associated with ARVC. My diagnosis came before a catastrophic event. Yet even gratitude has not erased the grief.
Lately, though, something has begun to shift. On July 5, I’ll line up for the Stampede 5K with my son, Luke. For most of my life, races have been about goals. Pace targets. Split times. Personal records. Qualification standards. Every starting line carried expectations.
This one feels different. For the first time in my life, I’ll stand on a starting line with no goal other than spending time with my son. No watch to check. No pace to hit. No finish time to chase. Just a chance to jog alongside Luke.
Not long ago, I would have focused on what I was missing. Now I’m paying more attention to what I still have. Somewhere in preparing for this race, I’ve realized that this is what my relationship with movement may look like now: slower, different, and less focused on performance. Less about what I can accomplish and more about who I get to share it with.
I’m also showing up differently for my children. Sitting on the sidelines, I see youth sports through a new lens. I don’t want athletics to define them the way it defined me. I want sports to be something they enjoy, not something they feel obligated to become.
I would never have chosen this path. I still grieve for the athlete I thought I would always be. But preparing for this race with Luke has reminded me that there is still joy on the road ahead, even if it looks nothing like I imagined.
And through all of this, I haven’t felt anger. Sadness, certainly. Loss, absolutely. But not anger. Maybe that’s because, deep down, I know how much my heart has already given me.
It gave me years of competition. Olympic Training Centers. State and national championships in soccer and running. A scholarship to Notre Dame. The Avery Brundage Scholarship to the University of Illinois College of Medicine. More than twenty marathons. Lifelong friendships. Discipline. Confidence. Purpose. It gave me everything I ever asked of it. Until now.
My heart gave me a good run.
And maybe that’s what I’m holding onto these days, not what I’ve lost, but what I was given. And maybe, jogging beside Luke on a summer morning, I’ll discover there are still plenty of meaningful miles ahead.
Loryn Kromrey is an anesthesiologist.
