Leticia Mirelez-Wong and I, at Sutter Medical Center of Sacramento, a few hours before her recent cardiac catheterization.
A few years ago I attended my first ACHA (Adult Congenital Heart Association) conference and it truly changed my life. Back when I had my first open-heart surgery, in 1975 at age 4, things were drastically different in many ways, but what struck me most of all is how connected CHDers, and parents of CHDers, have become. Back in the early seventies there was no internet and no actual in-person support groups of any kind. In those days "Heart Parents" found themselves in uncharted waters and kids with complex CHDs were way less likely to survive infancy. My experience of being in the hospital and having surgery was also drastically different than that of kids today. At the Red Cross Children's Hospital in Cape Town there were no Disney princesses visiting, no Spider-Man cleaning the windows, no capes, no music room, and not even any murals of cute animals to cheer up the sick kids. My parents did not celebrate my life as some kind of miracle and I was not taught to think of myself as strong, let alone a warrior. Throughout the rest of my childhood my heart condition was rarely mentioned, and while I was always considered strong-willed it was seen more as a problem than anything else. I had behavioral issues, probably related to PTSD, and slid right into the "black sheep" position in my family. Having a CHD was an altogether isolating experience for me. I didn't meet another young person with a CHD 'til I was 13.
Fast forward to today and things are drastically different. There are blogs, websites, group pages, in-person support groups, conferences, t-shirts, memes, and camps for kids with CHD. Connecting with others who have complex CHDs, and even Truncus Arteriosus specifically, has become easy to do! Initially, I joined a Facebook group for people living with CHF (Congestive Heart Failure), but quickly realized that my experience was very different from that of folks who developed heart disease as adults. Luckily there were a few CHDers in that group, and one of them lived just blocks away from me in Midtown, Sacramento! I reached out to Leticia Mirelez-Wong and we met for pizza. We have been friends and sisters from that day on. Since meeting Tiece I attended the ACHA conference and learned about a Facebook group for women with CHDs called the Zipper Sisters. Tiece and I both joined and I am happy to say that I now have a great many sisters who truly understand what life with a CHD is like. I have developed close friendships with several of my Zipper Sisters and I love that I can always turn to them for advice, commiseration, and that feeling of belonging that I lacked growing up.
While I have clearly benefitted greatly from the connections I've made with other CHDers, from participating in CHD culture, from learning more about my CHD, and from spreading awareness about CHDs, there is also potentially a darker side to some of that. I took a Health Psychology class this last semester and learned about "inspiration porn". I had never heard the term before, but I have experienced having my disability used by a "friend" as inspiration porn, or a way for her to get attention and play the martyr. She liked the idea of having a friend with a disability, and telling everyone about my CHD, but when it came to actual hands-on support she quickly jumped on an excuse to bail. There are many problems with objectifying people with disabilities and using them to guilt trip abled people into working harder. One of these is the fact that it puts us in a tiny box and pressures us into behaving in some way that others could find inspirational. On the toughest days of dealing with the surgeries, chronic pain, exhaustion, and traumas that are often a part of our lives with CHD, it is impossible to always carry ourselves with grace and perfect composure. We should not be expected to do so in order to fulfill someone else's idea of how we should be coping. I feel that this is important to keep in mind as I engage with other CHDers and participate in educating the wider world about CHD.
Overall, connecting with other CHDers has been overwhelmingly positive, and speaking out about CHDs has become important to me as well. Avoiding the pitfalls of inspiration porn while advocating for people with CHDs could only make me a better spokesperson and a better support person for my fellow Zipper Sisters. We are truly stronger together and being a part of this community has helped me grow in many unforeseen ways. I am deeply grateful.
