Forever Affected by Congenital Heart Disease

Titles have always played a tricky role in my relationship with Dan. When we met, we were teenagers and spent way too much time trying to define our relationship. For years, we moved between friends, friends with benefits, and boyfriend and girlfriend.

The year after college, we were in a foggy stage of a maybe we should break-up. Dan had just moved across the country to Los Angeles and I was living in New Jersey. Dan would often pay for my flights out to visit him in LA. Fed-up with our relationship status, I told him, "What 'friend' pays for their ‘friend's’ flight across the country? You're my boyfriend. We're boyfriend and girlfriend."

As Dan's girlfriend, I considered it my job to learn all about his congenital heart disease (CHD). That meant knowing that he had a shunt, a pacemaker, and took atenolol, among other drugs. I knew that it was normal for him to hiccup a lot, and that he really, really liked to have the air conditioner on.

Knowing these things meant that I could stay with him overnight in the hospital. It meant that my opinion was considered in healthcare decisions.

This may sound crazy, but when your boyfriend has a rare congenital heart defect, you can't expect the ER doctor to be the expert.

So it was a shock after Dan died, a social worker from his work told me that he was going to have an autopsy and what I had to say about it made no difference. "It'll help bring closure," she told me, "to know why." Then she told me that I had to drink some water.

But I knew why he died – he was missing a ventricle. I also knew that our religion forbade autopsies. I also knew that Dan had several open heart surgeries and he didn't want to be cut open again.

So I told his parents that Dan wouldn’t want an autopsy and so there was no autopsy. Still, despite being acknowledged and listened to by his own parents, I couldn't stop thinking about what the social worker had made clear to me: as his girlfriend, it wasn't my decision. 

I continued to experience a series of people repeatedly regulating me to the “just friend” status. In a grief group, the moderator told me how she lost her friend recently and she knew exactly what I was going through. She detailed to me with great glee, how even though her friend didn't have a stomach before she died, they still shared margaritas. And now that her friend was dead, she would bring margaritas to her grave and pour them over the grass.

All through this story, all I could think was: Dan wasn't my friend. He wasn't my friend. And why were you giving tequila to a person who didn't have a stomach?

But I just nodded my head and smiled.

I realize how unproductive it is to let people who care little for Dan or me question what we were to each other. But beneath these careless comments lay an implicit and deeply uncomfortable truth. One day, I’d have another boyfriend and then Dan would no longer be my boyfriend.

I've spent the last eight years trying to understand who I am without him and who I will be. One of the things that's hardest is figuring out how I refer to Dan now. Now that, yes, I'm in another serious relationship – what do I call Dan?

Depending on my mood and the company I'm with, I call Dan my "dead boyfriend," or maybe "a boyfriend I once had." Sometimes I slip and still call him my "boyfriend." 

Because the thing is, Dan died. We didn't break-up.

Sometimes I just call him Dan.

I was scared to tell people at the Adult Congenital Heart Association (ACHA) that I didn't have a CHD, but that my boyfriend did, and that he actually died from it. I knew that I could be a walking reminder of everyone's fear – that people do die from CHD. I also worried about the lack of definition in our relationship. Despite the seriousness of our relationship and his impact on my life, despite how I actually felt, I wasn’t his widow.

Yet I've found that the people at ACHA appreciate that I'm still around, despite the lack of a legal “title” to my relationship. I could have left CHD behind me when Dan died. But I didn't, and I won't. As a Heart-to-Heart Ambassador, I've been given a role that is tangible and directly related to Dan, which allows me to do something productive with my grief. I'm forever grateful for that honor, and for being welcomed into this incredible, forward-thinking organization.