ALONE

Elise

Growing up with a Congenital Heart Disease is weird. When you are a kid, you don’t really realize that it’s weird. It’s just your life. It’s just your normal. Sure, you know that you are different because of things like scars, medications, restrictions, surgeries, and doctor appointments. Being a kid with CHD is much easier than being an adult with CHD. As an adult I have struggled with so much more then just my heart disease, but the one thing that I have struggled with the most is the loneliness. As a kid, you don’t truly realize just how alone in this you are. And really, you aren’t alone. You have your parents, family, and friends cheering you on on the sidelines. People tell you how strong and brave you are and that you are their hero. But really, we all are born with an enormously powerful will to live, and we aren’t doing anything different that anybody would do if they just wanted to live. What I mean about being alone is that we are the only ones doing this. We are the ones having all the tests. We are the ones having to take medications. We are the ones feeling the side effects of those medications. We are the ones having the angiograms. We are the ones having the surgeries. We are the ones staying in the hospital when 8:00pm rolls around and visiting hours are over. Everyone gets to go back home and continue with their lives while we are alone in a hospital room, surrounded by people being paid to take care of us. And for me, that is the loneliest time of all.

The feeling of being alone was one of the hardest, most mentally challenging part of growing up with a disease that will never be cured. I struggled with just wanting someone to share the exact same things that I was going through at the exact same time. But over the course of this last year, after seeking therapy, I have realized that being alone and feeling alone are ok things to feel. My therapist asked me to just sit with my loneliness. To just be alone and to really try and feel what it was about being alone that was so difficult for me. I finally understood that accepting the reason of my aloneness was what was difficult for me. I was just so angry that the reason I was feeling alone was because of my CHD, and not because of something I could control. So, I decided to turn my aloneness into something positive. I get all this alone time to reflect on the fact that living with a CHD has given me a strong natural ability to rely on myself, and to really know who I am in this world. I get all this alone time to reflect on the fact that maybe I really am strong and brave. And maybe, just maybe, I really am someone's hero.