“Are you going to take this on, Doctor?” – Dr. Helen Taussig (Mary Stuart Masterson) Something the Lord Made
There’s something that you want to do that is… unusual. Don’t think that there isn’t; we all have that crazy idea every now and again. So what is it? If it’s moral, legal, ethical, and won’t get anyone hurt, perhaps it is time to throw caution to the wind and actually give it a try.
I never dreamed I’d write about living with a heart defect – I mean, I live 5 miles outside of a town of about 400 people. My life is boring; what could I say that wouldn’t put you to sleep?
Then one day my phone rang. I think I scared the person on the other end, since I was really huffing and puffing when I answered it. No problem, I reassured them. I’m doing my walk inside the house today; it is raining cats and dogs out there. What can I do for you?
The Adult Congenital Heart Association (ACHA) was planning a session at the national convention where selected members would stand up and speak about living with a heart defect. Would I like to participate?
That sounded like a lot of fun, and my time limit would be seven minutes. Even I can’t trip myself up in seven minutes, so I accepted. And how in the world had they chosen me? I’m your average dues paying member (ACHA had dues back then, now the organization is FREE to join – a great CHD resource at a fair price!) I don’t rock the boat, and I don’t stand out. I guess my name was just pulled out of a hat.
So I thought about what I wanted to say and got organized, stood up and spoke. I enjoyed it, and the audience did also. Well – no one threw anything! And the hotel that was hosting the meeting was connected to the airport by a walkway. No one picked me up, rushed me down the walkway, and put me on the next plane heading out of town. I took both of those as a good sign.
“I know in every fiber of my being that this is a limb that I want to climb out on.” – Dr. Alfred Blalock (Alan Rickman) Something the Lord Made
Adventures of a Funky Heart! wasn’t my first attempt at writing about my heart problem. I started a blog on a local TV station’s website, named Adventures in Cardiology. That lasted about a week – the only ones who could see it were the people who were registered users of the TV station’s website. And judging from some of the comments that were left on the news stories… well, a few of them couldn’t read!
Adventures in Cardiology wasn’t available, so I needed a new title. And about that same time someone commented “Your heart is just funky and doesn’t follow the usual rules.”
I played it straight for a little while, I really did. Then I started getting comments and emails, and a lot of them were thanking me for writing – they had children with a Congenital Heart Defect, and no one had ever really told them anything about how to raise a child with a ton of energy and a bad heart. So I stopped and really thought about who was visiting the blog and what I wanted/needed to say:
- Most of my readers were parents of children with heart defects
- These parents may understand their child’s heart (A percentage of them don’t, not yet. You just can’t learn Cardiology overnight) but they really don’t know what might happen next
So the best thing I could do was be both a teacher and a storyteller – tell stories about growing up with a heart defect (in the middle of nowhere!); try to explain different things about the heart, both normal hearts and defective hearts; emphasize just how normal I am (and a lot of other survivors, too!); and talk about any advances in heart surgery or taking care of CHD Children that I may find.
And keep it light – “go for the funny” if the subject is appropriate. Write so that anyone can understand. eBay is full of textbooks, if parents want to study a textbook, they could find one easily. Reading Funky Heart! is a good indication that a textbook isn’t what you’re looking for.
This is not the career path I would have chosen… it’s better. Because instead of sitting behind a desk pushing paper somewhere, I feel like I am helping out in my own little way. And a lot more people hear my voice when the Funky Heart speaks than when little ol’ Steve says something, and hopefully I’m saying something that you need to hear.
“When I put my hammer and saw down forty years ago and was offered an opportunity to work with a young surgeon, I had no idea that I would be able to make a mark on an institution as prestigious as [Johns Hopkins Hospital].” – Dr. Vivien Thomas (Mos Def) Something the Lord Made
So don’t be afraid to put your hammer down, and walk a different path. Who knows where your journey will take you?
Happy Red and Blue Day;