Posts Tagged ‘Public Speaking’

Spreading the word

August 2, 2009

I’ve spent all week sorting through what I want to say about last week’s Congenital Heart Defect (CHD) Symposium in Durham; it has taken me this long to try to come up with words that don’t sound so corny that my readers throw up their hands in exasperation. I’m not sure that I have been successful, but here it is.

I have never been to the hospital at Duke, they they have a very reputable Adult Congenital Heart Defect Clinic and I have always kept them in the back of my mind as an alternate in case I needed a specialized Cardiologist and my team at Emory wasn’t available. Their facilities are very impressive; if you were to pick your hospital based on appearance alone Duke would be a contender. Very clean and wee kept, and modern facilities. I smiled when I got onto the elevator and saw one floor marked as the Jim Valvano Day Hospital. Duke and N.C. State fought some wars on the basketball court; and you know that even though they won most of their contests, the Duke faithful were glad to see Valvano and his team load the bus and drive away. Now they can’t get rid of him.

The sessions were interesting and informative – even the session that I didn’t quite “get” for Funky Heart readers. Perhaps it was late in the day, or perhaps it was that I was looking for any signs of abnormal brain development in myself. I’ve always been a bit forgetful, one of those people who needs to write something down if they expect to remember it. I’ve always been that way, for as long as I can remember – and with a pulse oxygenation level of 80%, I just have to wonder.

But on to the important part: I had a strong feeling that I would be speaking mainly to Heart Parents, and used that group as my target audience as I wrote my presentation. I was correct; the attendees were mainly heart parents, and the oldest child I saw was about 7, I believe. And the parents were all young – my age and almost certainly younger. (There was one older couple, who I assumed to be Grandmother/Grandfather) It struck me that I could very well be the first adult with a heart Defect that these people had ever met – in a way, I represented what they hoped for and dreamed about for their children.

I got emotional several times as I spoke, but had promised myself not to break down completely. Not because Heart Defects can’t be an emotional subject, nor did I think some of the audience would think I was fishing for sympathy. I was supposed to be there speaking as a CHD Survivor, I could stay home and have a good cry! I wanted to use the limited time I had wisely. But I was able to get the audience to laugh, also, and humor is supposed to cure a lot of ills.

We broke for lunch after my session, and many of the parents thanked me profusely for coming. They were glad I had spoken, and I seemed to have encouraged them.

And it encouraged me, too. I felt like I was walking on air, just glad to be there and happy to contribute in some little way. I think that standing up helped me see another side of myself, and it helped me just as much as it helped those parents in attendance.

This is something we Heart Warriors need to be doing a lot more of – encouraging the parents of young Cardiac Kids. This is something I personally need to be doing a lot more of. So I am activity looking for more opportunities to speak.  I’m still here, and although I have my fair share of the little bumps and bruises that life dishes out, I’m enjoying my life. Maybe I can say something that would show you how to help your Cardiac Kid thrive, too.

Have heart, will travel;

Tell your Story: Being Asked

December 5, 2008

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!

Heather Magee: Share your story!

December 2, 2008

What follows is written by my friend Heather Magee. Like me, Heather has a heart defect; in fact, we have the same heart defect, Tricuspid Atresia. I met Heather at the Adult Congenital Heart Association (ACHA) convention in Philadelphia this past May. When I asked if she would write a “guest post” for Funky Heart, the only limitation I gave her was that it had to have something to do with living with a Heart Defect.

And now, from the keyboard of Miss Heather Magee:

As a storyteller I love writing tales about all kinds people and their adventures but when it comes to myself the brakes hit the floor.  It’s hard to be objective and honest, it’s such a vulnerable experience for me.

A year ago this week I lay in a cozy, queen size bed at my friend’s house recovering from my third open-heart surgery, a surgery I never thought I would have to experience. I thought I was fixed. So as I lay there I review all I been through in my 38 years of life, the many years of my denial had gotten me into trouble and I felt so alone. The depression was unbearable, I knew I was a healthier soul after my operation but my spirit was congested and confused.  I wanted to write a story, get it out of my system but heaven forbid I share my story. I needed a subject . . .  .  So I turned to the amazing Internet.  Within an hour of searching I came upon the ACHA website, I felt as though I found gold.  I read for hours, there were so many amazing people who I could relate to. I was absolutely overjoyed and truly indulged in all that the website had to offer.  Soon ACHA became a friend that I had to visit with many times a day.  My writing project had fallen off the to do list and I just enjoyed connecting with people who had literally felt my pain.  The months passed and I got stronger and stronger, before you knew it, it was late April and I was preparing to go to Philadelphia to meet all these people that had been such a huge part of my recovery.  Being able to attend the ACHA National conference was like being invited to the hottest party in town, I was so excited. Once I arrived I was completely overwhelmed and brought to tears, how had I gone so long without this community? Why did I always feel so alone when there were many, many people JUST LIKE ME? I spent the weekend learning as much as I could about the latest research and resources. I connected with as many people as I could and it was wonderful.  Shortly after I returned home I felt a bit sad and disconnected, I couldn’t quite pinpoint what it was that was that was making me blue, so I did my best to function.

Two weeks after the ACHA conference my friend told me about a show that was looking for heart patients, he thought I could be a great help to them considering the conference I had just attended. Within days I met with a casting producer and shared my knowledge on ACHA and all the people I had met. I threw CHD statistics at him as if we were on a trivia show. After about an hour of chatting, the producer asked me my story. My first instinct was to pump the brakes, but before I could even debate myself on the subject I was talking, sharing, spilling my guts.  It was as if my heart took over and was telling the story, my brain just sat frozen as all the raw, honest tales of my life hit the fresh air. Several days later I got a call from the executive producers of HOW TO LOOK GOOD NAKED, they wanted me to share my story on national TV.  That’s when I realized it was time to be a storyteller who shares the story of myself.   That is why I had been so blue, I didn’t release the one story I knew best, the story of me. That’s how you help those like yourself, you share your story, get it out there, let others know they are not alone.  There are so many people that need/crave a connection and how are they to find us if we don’t share and help build a community that will be there to comfort anyone who is in your very own shoes.

My name is Heather Magee and I shared my story on HOW TO LOOK GOOD NAKED on Lifetime Television.  I advise all with congenital heart disease to share, share, and share.  It’s the only way to heal yourself and others.


Steve again.

As I mentioned in yesterday’s post, the statistics say that there should be 2.4 million Americans living with a heart defect. We know there are 1.8 million – 1 million adults, and 800,000 children. Yet two things are happening: 1) Survivors like Heather and I often think they are all alone until they get involved in a CHD support group, usually by chance; and 2) As far as research funding goes, we’re getting the crumbs from the table. The March of Dimes supports preventing birth defects, not living with them, and “our” organization, the American Heart Association, concentrates on stroke prevention. Only a fraction of a penny of all medical research funds goes to Congenital Heart Defects. (.pdf file)

So it’s up to us. We have to step into the spotlight for a few moments and tell our own story. To find those of us who aren’t being helped by a support group, those who are “lost” to good medical care, and to educate the average person about Heart Defects.

Do you think that you can you do that?

I do, on this blog and whenever I get the chance.

Heather did… on national TV, at that!

You can do it, and I’ll help you… starting tomorrow!


December 1, 2008

“Who am I? You sure you want to know? The story of my life is not for the faint of heart.” — Peter Parker, Spider-Man

Here’s what I need you to do:

Call or e-mail everyone you know who is involved in the Congenital Heart Defect community. Heart Moms, Heart Dads, older Cardiac Kids…and ask them to read Adventures of a Funky Heart!, beginning tomorrow. By hook or by crook, get them here. If your friend doesn’t have computer access, offer to print out the page and give it to them to read.

Because tomorrow, Heather Magee is going to be my “guest host”, and she’s going to tell you about sharing her story with the viewers of How to Look Good Naked. And for the next few days, I’m going to help you prepare to share YOUR story… and help every one of us with a Congenital Heart Defect.

Because a Congenital Heart Defect is an “invisible disability.” In, fact, if you type the letters CHD into a search engine, most of the results will involved that other CHD – Coronary Heart Disease. The average guy on the street will never know we have one… and neither will our lawmakers. We’re an unseen group. If the population of the United States is roughly three hundred million, (305,787,407 estimated as of this writing) then there should be two and a half million people with a heart defect living in the US right now. That’s a pretty large group of people! But since we’re “invisible”, we’re often overlooked.

If we want better funding for research or insurance that is easier to obtain, we’ve got to get out there and let people know about life with a heart defect. Quell some rumors and disprove some misunderstandings. We aren’t just sitting around, waiting to die. We’re out living our lives, contributing to society, and all we want is a fair chance to keep on keepin’ on.

To get that chance, we’ve got to speak up. If you are interested in telling your story, I’ll be glad to help you tell it.

Heather’s story will be posted about 7:00 PM Eastern Standard Time Tuesday, December 2, 2008. Be here!

“I do what I do to defeat the evil that is inside of me.” — Lamont Cranston, The Shadow… and often borrowed by Steve, The Funky Heart