Tell your Story: Being Asked

I broke one of the major rules yesterday – I changed subjects in the middle of the conversation! But I felt that the information about Medicare part A was important enough to “interrupt myself.”

Now, where were we…

You’ve decided to speak up for those of us who have a Congenital Heart Defect (CHD) and I’ve given you some tips about how to shape your story. You’ve thought about it, perhaps written it out, and honed it into a great presentation. So where do you go to to tell it, and how do you get asked to share?

Volunteer! If you are in a meeting of your CHD support group and the moderator asks if anyone would like to say a few words, that’s your cue! Now here’s the hard part – this is not the time for that presentation we’ve put together. This group isn’t looking for your “Four score and seven years ago” speech – right now, they just want to hear who you are and what you are doing here. You’ll keep it simple and get right to the point. This is what I would say:

“My name is Steve, I’m 42 years old, and I was born with Tricuspid Atresia. I’ve survived three heart surgeries and even though I’ve managed to hit most of the bumps in the road, overall I’m doing pretty good.”

And that’s all. I never mention my pacemaker, or this blog, or heart failure. That can come later, all I’m intending to do right now is introduce myself to the group. If it is appropriate to mention that you’re willing to talk one on one with other members, do so.

The second thing you need to do is participate. If/when there is a group discussion, be involved. Don’t just talk to hear the words coming out of your mouth; actually have a point that contributes to the discussion. Know your facts and present them as needed. (You may want to start a research file, we’ll talk about that in a later post)

Never, ever make it up as you go along. You are trying to convince the others to trust you. If you make a mistake, that’s one thing. Acknowledge it and apologize. But if you are ever thought to be a liar, you lose all the trust you have built up – and you’ll never get it back. And please don’t give medical advice… even if you do have M.D. after your name, you may not know the complete medical situation.

Sooner or later your group is going to have an event – a fundraiser, or an event designed to raise CHD awareness. You need to get involved! You may be presented with a chance to speak; if so, shine up that eight minute presentation. If not, don’t worry about it – for every person that’s “out front”, there are a lot more working behind the scenes.

And while I am loath to tell you to “have fun” – It’s very hard to use the word “fun” in the same sentence with the phrase “Congenital Heart Defect” – I will tell you to take as much away from the experience as you can. Learning to deal with a CHD is quite a challenge. And a challenge can either destroy you, or you can overcome it. I choose to overcome it!

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3 Responses to “Tell your Story: Being Asked”

  1. RHONDA Says:

    HEY STEVE,
    THANKS FOR THE ENCOURAGEMENT ON MY BLOG. I THINK YOU ARE PART OF PALMETTO HEARTS TOO…AM I RIGHT?? MY SON WAS BORN WITH A CHD AS WELL…ANYWAYS..THANKS SO MUCH!!!
    RHONDA

    http://WWW.LOSINGITANDFINDINGME.BLOGSPOT.COM

  2. Helping our friends « Adventures of a Funky Heart! Says:

    […] tell it. I wrote about how to tell your story back in December; you can read those posts HERE and HERE. And be sure to mention your support group – they’re the gang that will ride into […]

  3. Amite Says:

    Dear Steve,

    It is so heartening to know that a actual person can live to 42 and beyond after a TA + Glenn & Fontan. My daughter born in middle of 2009 has TA. God keep you strong. I will show this proof to my wife.

    Thanks

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