Heather Magee: Share your story!

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!

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3 Responses to “Heather Magee: Share your story!”

  1. Katie Says:

    It was nice reading Heather’s story…because we have a daughter with HRHS, it’s always insipiring to read about women CHD survivors. Thanks for sharing Heather, and as parents, we feel priviledged to share our Maddie’s CHD story as well. There’s something theraputic about it and meeting families in the same situation is so comforting as well. We are not alone and neither our our kiddos with special hearts!

  2. carolyn compton Says:

    thanks heather, one of my twin boys (20 months) has TA and it is wonderful to hear news of adults who tell you the next steps for your bub. living in hope rather than fear. i am in australia and we get the “naked” series but it was cut short i think. i haven’t seen your episode, would love to….its not feeding through the website to aust :9

  3. Steve Says:

    Carolyn, here’s a link that will allow you to watch Heather’s Episode of How to Look Good Naked! online:

    http://www.mylifetime.com/on-tv/full-episodes/how-to-look-good-naked/video/season-2/episode-8/season-2-episode-8-part-1/1780606263/1782569566

    Hopefully it will work for everyone!

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