My dad sometimes talks about how when I was born, I fit in just one hand, from his fingertips to his palm. I was reminded of this when I randomly came across an article today. I sort of couldn't believe it, because I was effectively reading about myself, my past, my life, my story.
I feel like I should have been informed of it, like I should receive a certificate, or a medal, or a cuddle. Instead, I just happened to stumble upon it and I'm so glad I did! The title read, "FDA Approves World’s First Device That Could Save Thousands of Preemies From Common Heart Condition."
I'm one of the preemie guinea pigs that went through with trying out this device when it wasn't yet FDA approved. I was born 3 months premature and at the time was given experimental drugs to try to stop a heart murmur. It seemed to do the trick, but when I developed pneumonia at age 14 the murmur was rediscovered.
I had the Amplatzer Occluder implanted back in 2001 when I was 19. There weren't many who had it yet, and without FDA approval this was a pioneering expedition. I don't know if it's done me good, but it took away doctor's concerns that I might get an infection in my heart from blood cycling in circles due to an open vein, otherwise known as Patent Ductus Arteriosis (PDA). There were so many lead-up and follow-up appointments to having that surgery.
I remember the fear and overwhelm whenever doctors would hear my heart murmur and say something needed to be done.
I remember going into surgery thinking I was going to die, with good-bye notes to my loved ones tucked away in my desk drawer back home.
I remember being awake during the procedure, seeing my heart on the monitor, and repeatedly telling the docs I could still feel everything as they were moving through my veins and up to my heart... a surreal experience.
I remember struggling for a while to keep up Freshman year of college after I had the device implanted.
I remember crying my senior year when I realized I wouldn't be able to make it to a ceremony for an award that I had worked so hard to earn, because I had to go to yet another appointment for FDA processing.
I also remember worrying over the financial cost we ended up having to pay, even when we'd originally been told none of the cost would fall to me, since it was a trial.
There was a lot of stress, anxiety, and fear that went along with it. But I hope it helps future little ones. If it does, then I can say my struggle was worth it.
That's the heart of it, the nugget of concrete happiness tucked away in hardship. I've found the same with other chronic conditions. I struggle until I find answers, and when I find answers I try my best to blast them out into the world, so that others don't have to stumble through it all the way I have. I thank others who've come before, or who walk alongside me, and have done/are doing the same, to my own benefit. And I am grateful for the loving hands that have supported me along the way.
In short: we seek love, we find love, we spread love.
As an interesting side-note, I went to an energy healer a couple years after this surgery. It was my first in-person instruction for a technique known as Reiki. Aside from setting up our session, I'd had zero contact with the practitioner beforehand. As she was talking she waved her hands in the air in front of me. Mid-sentence she stopped and asked, "Do you have something in your heart?" Um, why yes I do! "I thought so," she responded, and went on totally unphased with what she'd been previously talking about.
I've wondered about this devise nestled in my heart over the years. Is it doing harm I don't know about? Or has it helped me in untold ways? I'm sure anyone with chronic illness or implanted medical objects will understand this cycling of thought. For me, between this article now, and that energy session all those years ago, it's as if I'm being sent the message:
It's there. It's okay. Let's move on.
Today is a period to the end of this particular story. On to the next...
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People often say disease leaves them forever changed, with new understanding and even benefits. I sometimes scoff at the notion, because disease sucks. But, while I would never wish it on anyone, there is truth in this perspective.
What has your "heart of struggle" been? What's the positive take-away that has come out of your personal trials?
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For more on the new story I will be delving into next, you can check out this page for more on advocacy for chronic invisible illness.
