Our March guest blogger is Randy Leigh
I grew up normal. I think. I always felt normal I guess. I think I’ve always looked normal. I’ve got a heart condition, it doesn’t really affect my everyday, but it does affect the major decisions I have and will have to make, mostly decisions regarding physical labor and having children.
So, I was born with a heart defect. I had my first surgery when I was 2 days (Yes, DAYS) old. The surgery I had was called TGA (Transposition of the Great Arteries). My Pulmonary and Aortic arteries were in each other’s place. Bad at sciencing? Me too! Break Down: The things that connect your heart to your body had swapped seats and were in the wrong spots. So they corrected that.
I had 2 more open heart surgeries after that at about 8 months old, just to “update” the situation. The 3rd surgery was totally unnecessary; they didn’t close an important element inside me so they had to re-open my chest to fix it because there was internal bleeding. I learned that the shock of re-opening your chest causes your body to freak the fuck out so instead of closing me up they packed the wound, wrapped some (Hospital grade?) saran wrap around me and called it a day. They of course went back and closed me up. This all occurred before my 1st birthday.
I don’t remember any of it. Thank goodness eh!? I do, however, remember almost all of the subsequent angiograms, MRIs and breathing tests (ugh the breathing tests) I had growing up. I especially remember the valve replacement in 2013. Basically, my Aortic valve was severely damaged, they fixed it, that sucked. More on this later.
Like I said, I always felt normal. My parents never made a big deal about my heart condition or what I’d been through. They never babied me, although admittedly, I was a huge baby. I never felt like I was treated any differently, from other kids or my siblings. I didn’t know any other form of living life. I was a competitive gymnast and a competitive dancer, I was tough! 3 heart surgeries and a few hospital visits can’t hold me down! It wasn’t until I had my 4th surgery that I realized how the rest of my life would be affected by this one-tiny-thing. And how much that tiny thing truly dictated my entire existence.
People talk about being a survivor. They call me “strong” and a “warrior”. But what do they know? I feel I truly acted like a baby! I made them let me hold my stuffed bunny in the operating room until the anesthetic kicked in. And I cried every single time they gave me a needle. Which, felt like an hourly occurrence while in recovery. Let me be clear, I am not apologizing for acting this way, but I was terrified of heart surgery and everything that came with it. I stressed myself out so much that I lost large amounts of hair. I ended up shaving my head before my last surgery so it would be the same length as the balding patches.
Having a major surgery really made my loneliness palpable. I prepared for my death on that operating table. And I also prepared for the loneliness in the hospital if I did survive. I went into heart surgery disappointed in myself because I was still single, living with my parents and working a job I hated. I’m still single but it’s not so devastating anymore. And I’m no longer living with my parents or working a job I hate. So I guess I’m still “normal”, like everyone else. I don’t know what the future will hold like everyone else. I do know that I will have to have at least one more surgery when I’m older. I know that being pregnant and having kids will be very difficult for my heart and I know that not everyone can handle what I will need to endure. That notion has been the most difficult part of my heart condition journey.
For the most part, people are polite with regards to the scar on my chest. But I’ve had the odd time when someone will flat out ask me about it. Usually, because it’s a little rare to see someone so young have that kind of scar. I’ve never been made to feel ugly because of it, but I do have insecurities relating to it. I have one picture of myself as a baby in an incubator before my first surgery where I do not have a scar. A completely smooth chest… That picture makes me sad. I’m not sure I can put into words why. I don’t know if it’s because there isn’t a scar, or if it’s the awareness of what that little baby (me) is about to go through, or if it’s the wondering of what could have been if I was born without a heart condition. That last thought hit’s me hard, every time.
I do find myself resenting being born this way. I hate that I have to deal with the things I have to deal with. It’s not fair. I wish I could say I’m above it, I’ve learned that life isn’t fair and that I should accept the hand I’ve been dealt, because life is beautiful in so many other ways…but I’m not there yet. I’m bitter. Of course I am happy and I don’t openly hold this grudge on life, but it is a weight I feel. I don’t know how to walk away from the heaviness. I know however, that everyone has their own issues.
For now, my life is good. I’m “healthy”, I’m happy -most of the time- and I try not to focus on my heart. It isn’t easy when everyday things like how much coffee I consume affects my heart; but I do feel like I’m getting closer to fully accepting the hand I was dealt.
You can access more on Miranda and keep up with what she is doing through the links below:
facebook: Randy Leigh