Turning Grief Into Purpose

Dan told me about his heart condition three days after we met. We were at a week-long national convention for Jewish teens, and if you wanted to get to know someone, you had to do it fast. I didn’t think much of it. Tricuspid atresia felt like some fancy word for something that happened long in the past, and now Dan was alive, healthy, and ready to embark on his first year at Yale.

Dan and I connected instantly. Even though he lived in Providence, and I lived in New Jersey—we stayed in touch, went to prom together, and even when we were in college (he at Yale, me at NYU), we continued to date.

Strange as it sounds, I’m happy that I didn’t think too much about Dan’s heart condition back then. It was a part of him, but it wasn’t all of him. Dan first thought he would major in biochemical engineering and create artificial mechanical hearts—he ended up following his passion and studying film and computer science. After graduation, he packed up all of his stuff into his car and drove cross-country to Los Angeles to pursue screenwriting, and dreamed of one day working for Pixar.

I was absolutely sure this would happen.

By now, I understood how his heart condition loomed large in his life—I had seen how he struggled with arrhythmias and his year-long recovery from open heart surgery. I knew that this wasn’t something that existed only in the past.

As Dan drove across the country, he did so with urgency. “You don’t understand,” he told me. “I’m going to die at 25.”

It wasn’t something I wanted to think about. It certainly wasn’t something I wanted to believe.

But I knew, deep down, it was a possibility. I moved across the country too. We were in constant communication, always monitoring how he felt. For those first two years in L.A., Dan was doing better than ever.

One weekend, Dan felt a little off. Like he could be having an arrhythmia. I put my ear to his chest and heard his heart beat steady and strong. We knew my ear couldn’t serve as a final diagnosis, and although he was still getting used to his new doctor, he promised to schedule an appointment.

The next day, while Dan was at work, he suddenly collapsed and died.

Learning to live life without Dan has been incredibly hard. People have often told me that Dan was lucky to live as long as he did. And of course, he was. We’re all lucky to keep on living. But I refuse to believe that Dan’s death was some inevitable tragedy.

ACHA has been instrumental in helping me grieve. It was at their L.A. conference in 2011 that I first met other people living with CHD, even people living with Dan's specific condition. That's when I actually started to feel better. It may sound strange, but it helped me knowing that Dan could have lived a longer life. What happened to him was terrible and awful—but now I had a mission. I wanted to help others live well with congenital heart disease.

When someone is living with a condition that affects our most vital organ—the heart—death seems unavoidable. Transitioning from pediatric care to adult care can feel insurmountable for a young adult. ACHA provides adults with the support they need to transition successfully. Moreover, they’re committed to improving lifelong care for adults with congenital heart disease.

Last year, I became a Heart to Heart Ambassador for ACHA. Ambassadors often serve as “first responders,” and provide members with practical and emotional support—they’re a friendly, listening ear and offer guidance based on their own life experiences. Ambassadors also speak regularly across the country through the Lifelong Care Campaign, and educate young families and the community on the importance of lifelong heart care and empowerment strategies for those living with CHD.

ACHA is a small organization, and every donation goes a long way—$25 covers the cost of one one-time support request, $50 supports one local Lifelong Care presentation, and $100 funds 3 months of one-on-one support. I experienced this incredible support firsthand. ACHA helped me not only process what I was experiencing—they helped me feel a part of a community. I’d give anything to bring Dan back to life, but I can't. I'm grateful to ACHA for giving me a place to turn my grief into something purposeful.

From ACHA: Trained Ambassadors provide a lifeline to adults with CHD and their family members. Our goal is to raise $10,000 this year in honor of our committed Ambassadors like Stephanie. Consider making a donation today at http://achaambassadors.causevox.com.