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Heart against Mind

I think we can all agree that 2020 has been a rough year. It feels like the world changed in the blink of an eye and we're all running to catch up and figure out how to live in these new times.

With the complete shut down of my industry and being highly immunocompromised, I've had a lot of time in these past 6 weeks to think and to overthink all aspects of my life - and health.

For those unaware - I was born with Pulmonary Atresia and L Transposition of the Great Arteries - or in english - my heart is physically backwards. I have had three open heart surgeries all by the age of 3 to help it function properly. And yes, my scars do look pretty badass.

Often when I speak of my heart condition, it's in a way that's positive or inspiring, regardless of what's currently going on with it. I've gotten pretty good at cracking jokes and throwing on a smile when the topic comes up. But the thing is, I'd be completely lying if I said that this is how I always feel. And while lying make things easy and avoids conversations I don't want to have, sometimes you need to talk about what's truly going on in your head.

It hit me for the first time when I was 18 and had an awful experience with a doctor who seemed to enjoy telling me that I was dying (which I wasn't). This one conversation sent me into a weird spiral of fear and uncertainty that took me a good year to pull myself out of. Before this, I had never gotten bad news. I was unique, my heart was special, and I never viewed it as dangerous. Although I've grown stronger from this, I don't think I've quite seen my heart in the same light since.

I remember getting the bill of good health one year and bursting into tears, leaving my dad sitting across the hospital room concerned and wondering how I could be upset. But how do I explain to someone that loves me so much that I'm exhausted? Exhausted, because while I'm grateful to be healthy, every year it sits at the back of my mind that it's not always going to be good. One year I'm not going to get the news I want and that I should be preparing for that. It feels like my brain is constantly running into overtime trying to grasp that this heart of mine is never going to change. The appointments will never stop and I'll never truly feel at peace with it. I have this sense of loneliness because as much as people are there to support me, they'll never fully relate to how I feel. And do I tell people? Or keep these thoughts to myself because I'm also terrified of hurting my family who already worry about me enough. I feel like my mind is fighting between reason and fear and I still haven't figured out which side is winning.

This past February I was told that my heart rate has slowed down significantly enough to cause concern. I've since had more appointments that have shown my heart function is still incredible, but I will be undergoing a minor surgery to have a loop monitor placed over my heart which will determine when I'll need a pacemaker. February was my first bad news in 22 years and it hit me harder than I'd like to admit. With that and then being thrown into quarantine only weeks later, I needed an outlet to cope with how I was feeling. I've always used photography to express how others feel, so this month I decided to try it on myself.

This post isn't meant for pity or to upset anyone, it's just my way of venting and to give a little insight on what's going on in my brain during the bad days. These feelings come and go so please do not worry. At the end of the day I will always pull myself out of it and it will not hold me back.

Be kind to those around you, we all have our stories.