Taking Back Some Control

For the month of March we will be discussing the various “taboo” subjects that come up in thinking about life with CHD. This week we will hear from Jennifer, a CHD warrior, who talks about how she took back some control by choosing some of her scars.

I was trying on dresses for my best friends rehearsal dinner. My mom, sister, and I had gone shopping together. I had come out of the fitting room to get my zipper zipped, without realizing my new tattoo was visible – the dress gaping open in back. My mom hadn’t seen it yet.

When my mom noticed the tattoo she wasn’t mad per se, but her disapproval was apparent. I was, however, 30 years old and had the right to make decisions about my own body.  And of course, this wasn’t the first time we found ourselves in this situation.

Growing up my parents were not big fans of body piercings or tattoos. While my best friend, and pretty much every girl in my class, had her ears pierced basically since birth, my mom made me wait. In fairness, I only had to wait to get mine done until after my 1st communion in second grade, but at the time it seemed like FOREVER, since all my friends had it done already.

When I got to high school, I wanted a second hole in my lobes. I knew my mom would never let me, so I convinced my aunt to take me instead.

Senior year, like many teenagers, I decided I wanted to get something – ANYTHING – else pierced the day I turned 18. It was a rite of passage, after all. But I would be having surgery number 2 just a few months prior, and my mom didn’t think it would be a good idea. To be honest, this was the first time it even crossed my mind that there could be link between piercings and heart health. I thought my mom was just being over protective.

So being a stubborn teenager, I wasn’t going to take no for an answer. Days after surgery, on rounds, I asked the surgeon if I could get my cartilage pierced. I felt vindicated when he gave me a very cautious green-light. So the day I turned 18, I walked myself to the Claire’s near school and put another stud in my ear!  And my mom took it like many parents do, looking on a little unhappy, a little disappointed, but accepting that as I grow up, somethings are out of her hands.

Over the years, I got a second cartilage piercing and pierced my nose. Twice. No, I didn’t have two nose piercings at once, but I was so afraid of my parents seeing it the first time around, I took it out, only to do it all over again a few months later!

Once I’d had enough piercings, I moved onto tattoos.

A couple years after graduating college, my friends and I decided to get tattoos together.  I got a tiny heart on my left foot, with a tiny crooked halo and a three-feathered wing off one side. I got it to remind me of my grandfather, to remind myself he was always with me.

At the end of 2011, I set out to do 30 before 30 –  a list of 30 things to do before I turned 30. The list included tasks like “do an anonymous good deed” or “go for a hike at sunrise”. I also included “get tattoo #2” (I did at least think ahead to pre-medicate). I wanted something that symbolized my hope for my life.  And since I love words, I went with a quote. It reads, “Go confidently in the direction of your dreams. Live the life you’ve imagined.” 

I had spent a good portion of my life being afraid to live it, so while reaching that milestone, 30 years old, I wanted to celebrate, to push myself out of my comfort zone, with a reminder that I had the strength to make my life what I wanted it to be.  That’s what the whole list was about anyway, and the tattoo would be permanent  proof of the accomplishment.

So as my mom zipped my dress and I assessed myself in the mirror, she asked me, “Why do you want to do that to your body anyway?”

I said, “I have so many scars already, might as well have a few I choose.”  And I gave her reflection in the mirror a goofy grin.

My tattoos and piercings have meant different things to me as I’ve aged. First, it was the rush of excitement in the rebellion, in the wildness of it.  It felt like self expression, like coming of age, and, most importantly, it feels like taking control of my body.  And I can’t wait to add more!

*NOTE – Be sure to check in with your cardiac care team prior to piercings or tattoos. While you may or may not have restrictions regarding these, your team may recommend certain precautions like pre-medication. 

 

  Jennifer Weiner was diagnosed with Truncus Arteriosus after birth in 1982. She has had two open heart repair surgeries, at 18 months old and 17 years. After complications arose and various anomalies were uncovered in early adulthood, Jennifer had a stent placed in her LPA, received an ICD, and will be having her 3rd open heart surgery later this month. Now 37, she is a graduate of DePaul University, with a degree in Elementary Education and an MA in English and Creative Writing, from SNHU. Jennifer currently volunteers for the Conquering CHD, both nationally and locally, as the ACHD Lead and on the Illinois Chapter Board. She also serves on the steering committee of Chicagoland Cardiac Connections, an organization that provides support and resources for patients with cardiac devices, based out of Lurie Children’s Chicago.