My Cupcake Heart

I wish life were as simple as a rapid heartbeat attributed to an espresso I shouldn’t have had before my appointment. I could have gotten drunk and done a line of a coke before the doctor visit and I’m pretty sure it wouldn’t have given me a different result. I’m in a waiting room, waiting for my EKG. Just finished the 22nd echo scan of my lifetime. Maybe it was my 23d, who’s counting. That doesn’t sound like alot, but trust me: opening my top up and allowing a man to rub a small knob with echo gel on my chest while ever so delicately ignoring my boobs twice a year is quite an occasion. I’m counting.

At 22 years old I was diagnosed with a serious heart disease. They found a leak in a severely damaged valve and I went into congestive heart failure. I was 8 months pregnant. Until then I imagined that dying could be the worst thing in the world. After learning to love the baby growing inside of me, I knew that there were definitely worse things.

When I was a kid, a virus attached itself to me, & never let go. The virus is still in my bloodstream, in untraceable amounts and attaches itself to susceptible tissue. Valve tissue in the heart is the wimp of all wimps and fits into the vulnerable category. Anything that had been symptomatic in my life until this point had been overlooked or insignificant. Maybe I was too low maintenance as a child. I was the middle kid and knew my place quickly. If I had told someone about the burning in my chest when I ran a little faster or fought a little harder in Tae Kwon Do class, then maybe it would not have gotten so far. Who knew that the dizziness and nausea from lack of oxygen was not normal? Not me. The rattling when I took deep breaths could have also been a sign. I used to tell my friends “hey listen to this: inhale *rattle rattle rattle* exhale *wheeze rattle wheeze* and have a good laugh about it. Not so funny in retrospect. Ahh well. Hindsight and all that. The result is a scarred valve that will never heal or stop scarring. The best I can hope for is that it will maintain until I am well in my 70’s, or have crossed off most things on my to-do list.

The funny thing about being diagnosed with something so serious sounding at such a young age is that it forced me to think differently about many decisions I have made. While my classmates were preparing for their last spring breaks of their college careers, studying, drinking, partying, graduating: I was under observation and admitted into intensive care. I had incisions put into my thighs and a balloon inserted into my chest. I was told that this was fairly routine and relatively risk free. I didn’t know how to process information that they gave me. The only words I really understood were heart and balloon. The stuff of Valentines Day and other gratuitous holdays. I wanted to tell them that risk free at my age meant having a designated driver. But no one asked me how I felt. I don’t know that anyone on that medical team took the time to consider that I hadn’t experienced life events of most people who undergo this procedure. It’s an old people’s disease. How could it not have been traumatic?

The idea was that the balloon would open the valve wide enough so that congestive heart failure would not become a part of my daily life. It worked, but the scarring continues. After that surgery they warned me that in 5 to 6 years I would need to consider a valve replacement. I hadn’t even considered grad school. I had not even had my first real job.

Eleven years later and here I am: healthy (relatively), happy (on most days) and with my original valve. I could be well into a full head of white hair before they consider putting a pigs valve in my chest. Its not a miracle of any kind, many people live long fulfilling lives with my condition. I take very good care of myself and am neurotically hyper proactive about my health care. There isn’t a miracle in my sickness or my recovery. Many people are diagnosed with and fight off more serious illnesses than mine. My sickness is gradual and prolonged, and to fight it would prove useless. The miracle is what it has taught me, and continues to teach me every day. My life plan has changed many, many times in the course of the last 10 years and as crazy as it sounds my one constant has been this disease. By now we are old friends and I embrace it as a gift and as part of my life.

Today’s visit is especially significant because I am finding myself at a crossroads. Again. Inside I’m screaming. And it’s leaking out of my normally positive exterior. I can’t even help it anymore. While inspiration and positivity is pain free & effortless to some, it’s almost another job for me. I cheer myself out of bed and through each moment every single day. There’s a very tired girl with pom poms living in my head, begging me to get over myself. My marriage seems to be in disarray. My home is currently in foreclosure. My job sucks what bit of soul I have left out of me on the daily. I miss being home with my baby and have relegated her to substandard care. Ok, so it’s her father, but still. That’s supposed to be my job. And my heart aches for people and things that are too far or too much or just enough out of reach for me to want in the way that sappy country songs remind you to want.

Being sick weirds me out, for lack of a better expression. Maybe it’s because there isn’t anything urgent about it. Everything we learn about getting sick and getting better is challenged by the prolonged nature of my illness. It’s that lack of urgency that makes me love it more. I’m laying on my side as the technician does my scan, and he answers my questions about the photos on the screen very methodically. They are textbook answers. Matter of fact and cold, we chat as if we are watching a television program and not looking directly at my own heart. My memory flashes back to the balloon procedure 11 years ago and the black and white screen, like a picture perfect and abstract blob, the doctor urging me to prepare myself for the feeling of an elephants weight on my chest. And yet, here I am. It didn’t stomp me.

I’m not sick enough to die tomorrow, not from this anyway; but I’m sick enough to be scared that my breathing depends on a tiny fragile leaflet, that opens and closes at it pleases, working double time because the other refuses. It’s a real and constant fear. Maybe irrational, but still real. I could vomit thinking about it. I’m not sick enough to plan my funeral; but I’m sick enough to consider where my children will go when I die as morbid reality. Will the children I co-parent be permitted to grieve for me? Will my own children survive with people who do not love me as much as I wanted? I’m not sick enough to live life as a saint, making no mistakes to ensure my safe passage to Heaven; but I’m sick enough to be kind and loving when others would have given up because I truly care about what I leave behind. And I truly care about where I am going. This faith give me boundless love at my darkest moments that I couldn’t even begin to describe. There I go with the sappy country love song, but when it’s true, it’s true. These are truths that I would never have learned, had I not been given this gift.

Most importantly, I’m not sick enough to accept all the negative things that seem to flood my path simultaneously. I’m sick enough see each of the challenges for what they really are, to translate them into lessons I can carry with me (and leave behind), and to reflect on the long future I see for myself, living life as I imagine it can be. I’m sick enough to choose the road that brings me to change and well enough to enjoy the path along the way.

Peace.

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One thought on “My Cupcake Heart

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