Posts Tagged ‘Facebook’

Second Hand Heroes

September 24, 2010

We’re not your classic heroes. We’re the other guys. – Mystery Men (1999)

The other day I discovered a Facebook based Heart Defect group engaged in a pointless mental exercise: They were listing celebrities that are connected to the CHD Community in some way that they feel should become a “Congenital Heart Defect representative”. Once that happened, “awareness” would be raised, money for research would come pouring in, and we’d all be saved.

Oh good grief.

I’ve seen this happen before; the group concentrates its efforts on recruiting that one big megastar and ignores the people who are actually doing the job. Because true advocacy for an issue is difficult work. You don’t just stage a few events, look good for the camera, and recite the proper sound bites. It takes time, and the job is detail oriented grunt work. The i has to be dotted and the t crossed correctly and that is your job. Long hours, very little sleep, and the “pay” is a pittance, if anything. You do this because you believe.

And by the way – if all you are doing is “raising awareness”, then you are not helping. That young mother doesn’t know Heart Defects is the most common birth defect… and she doesn’t care. What she does know is that her child is very sick and the doctors are throwing words at her she doesn’t understand.  She wants someone who can explain this to her in simple English and give her some hint of the future. And even if the future is dire, she wants to talk to someone who will tell her the truth, and gently let her know that sometimes its OK to say goodbye.

I’m honored to know people like this and count them as friends; I’ve also shared some of their stories on Funky Heart! over the past two years. You probably haven’t heard of these people anywhere else. They don’t mind; because they aren’t seeking personal glory.

The most “famous”  Heart Warrior I know might be Heather, a CHDer who saw an ad in a magazine for a TV show seeking women with heart disease. From the wording of the ad Heather realized they were looking for people with Acquired Heart Disease and ignoring CHDers. Heather got in contact with the show producers and gave them a piece of her mind – and as a result, appeared on the TV show How to Look Good Naked!

Then there is George, a retired doctor with Tetralogy of Fallot who spoke at Lobby Day 2010. I always thought George was kind of reserved, but I found out he just waits until the proper moment. When he got through speaking we were ready to tear the walls down! “One day, Congenital Heart Defect survivors are going to live to be eighty, ninety, and even one hundred years old,” he said. George is also doing his part to keep Heart Warriors going – During Lobby Day he took a young adult/older teenager under his wing. Near the end of the day George told him “Remember what we’ve done here. One day this will be your job.”

Karen T. Chavez and Kim Rooks serve as Co-Directors of the Broken Hearts of the Big Bend. Heart Defect Awareness isn’t always the answer, there are times when what is needed is Education and Support. If you have a Cardiac Kid in the Tallahassee (Florida) area, Broken Hearts members can walk you through what may come next – and be right there with you, lending a helping hand when you need it. Why? Because we’ve all been there.

Colorado’s Amanda Adams has a Cardiac Kid; when he was born she could find very little information about his defect and almost no support. Frustrated, she decided that no mother should ever be in such a situation… and began the support group Hypoplastic Right Hearts.

Amy Basken is into everything – right now, she’s on the Advocacy Staff of both the Adult Congenital Heart Association and the Children’s Heart Foundation; serving as the National Advocacy Coordinator for Mended Little Hearts; and serves as Chairperson of the National Congenital Heart Coalition. She does all this “because I am a mom of a kid with a heart defect.”

A former teacher, Amy Verstappen‘s health deteriorated after the birth of her daughter. Unfortunately she had some doctors we were not familiar with Congenital Heart Defects in Adults and they almost sent Amy for a heart transplant! Thankfully Amy found Cardiologist Dr. Carol Warnes. Dr. Warnes saw the X-ray, knew what she was looking at, and got Amy what she really needed – a valve replacement. After the surgery this same Cardiologist challenged Amy to do something about the adults with CHD who were not getting good care. Her journey has taken Amy out of the classroom to serve as President of the Adult Congenital Heart Association.

And not to be forgotten is the late Jim Wong, a PhD who lived and worked on the West Coast. Jim’s training was in Chemistry, but when it came to learning about heart defects he just wanted to know as much as possible… and he never hesitated to share what he had learned.  He often traveled to Washington to serve on a patient advisory committee for the National Institutes of Health, and was at every ACHA event I attended until he was too ill to attend.

Fifty-four years old, Jim was one of the older CHD survivors, and grew up in the days when CHDers were X-rayed, scanned, and fluoroscoped as much as possible. A lot of older survivors pass away after a bout with cancer, not because of their heart. There is currently no medical evidence to prove this, but one theory contends that absorbing all that radiation while they were young leaves older Heart Warriors more susceptible to cancer.

Jim Wong died of cancer earlier this year, perhaps as a result of all those x-rays. I like to think he died the way he lived – helping others learn about defective hearts.

Funky Heart PLUS!

September 13, 2010

Be sure to check out Adventures of a Funky Heart! on Facebook!

You will still be able to read Funky Heart! posts on Facebook, but the page offers something just a little bit different. I check over one hundred online resources daily searching for items to write about. I find a lot of things that are interesting, but that aren’t suitable for posting here. Usually, the reason is simple – it has nothing to do with Heart Defects.

I used to just save the links and hope I could use it in a post later; but more often than not time would pass and I would just have to erase the link. Good links are like homemade bread, they are best when they are served fresh!  So the Facebook page is sort of like “Funky Heart PLUS”… You get the “regular” Funky Heart posts and you get those non-heart related links that I think are so interesting! There’s really no rhyme or reason – you might see a link to the latest in Stem Cell news, a blog post that I liked,  or even an article about the very first Heisman Trophy winner… who gave his Heisman to his Aunt. She used it as a hat rack.

So look us up on Facebook at THIS LINK, check out all the cool links on the wall, and hopefully “Like” the page and hang around! Your coffee break conversations will become a lot more interesting!

Good News for McKenzie!

January 10, 2010

The news is good! I learned via e-mail just a few moments ago that all the pieces of the puzzle have fallen into place, and McKenzie jets to Baltimore on Tuesday, January 12!

Good evening everyone… For those of you who have not heard, and I do apologize for not updating sooner, but we will be headed to Johns Hopkins Hospital in Baltimore, Maryland on Tuesday for McKenzie to have heart surgery.

Obviously the crisis is not over – there is still the prospect of a surgery ahead – but the plan is in motion. And most of it was orchastrated by people who may never have even met each other before:

Next came, How do we get to Maryland with McKenzie? —— I initially posted on her Facebook page that we were in need of a private airplane to take McKenzie to Maryland. We also were in contact with the local newspaper. The newspaper did a front page story on McKenzie and our need to get to Maryland. Through lots of kind people and many efforts, we have a flight to Maryland!!

…The community has really come together to make this happen for McKenzie, which without surgery, we would end up losing her sooner rather than later.

Quite a contrast from the day my parents rushed me to Johns Hopkins. Our pediatrician had set everything up, but they still had to get me there, and to do it they drove into the worst snowstorm in memory. And what does a Southerner know about driving in snow? It seemed like every other driver had buried their car in a snow bank, but we made it. Slow and steady wins the race – and rarely winds up skidding off the road.

The second time I needed surgery (1977) there were more resources to draw from, and The United Way helped pay for our airline tickets. When I almost bled to death (1988) we had people across the Southeast praying for us and willing to help. And there was no organization – one person picked up a phone and called a friend, who called a friend, who called a friend… and on and on.

Supposedly an e-mail can go anywhere in the world in eleven minutes or less. Hardly anyone had a cell phone in 1988, we had to wait until the early evening (local time) to give someone a chance to get home after work before calling and asking for help. We can communicate with more people, and do it quicker – and increase the chances that someone, somewhere, can make the connections that can help a child in trouble.

I often tell you how medicine is making great strides, and I’ve shown you some of those advances right here. But it is the people, the personal connections, that counts the most.

Two Friends in a Hole

February 3, 2009

It’s happening!

Using Facebook to promote Congenital Heart Defect (CHD) awareness is picking up steam. If you have a CHD, are a Heart Mom or Heart Dad, or just a friend of someone who has a Heart Defect, join us! Change your status to read “(Your Name) is a Congenital Heart Defect Survivor! Celebrate CHD Week with me, Feb. 8-14, 2009.” Of course, word it differently if you are a parent or a friend!

Heart Defect Survivors depend on our support group. Our parents are priceless; our friends are irreplaceable. But sometimes the most important people in our lives are Fellow Survivors…. someone we can sit down and talk with. No holds barred and nothing held back. Someone who has been down the same road we’ve been down. They are the only ones who truly understand what we deal with.

Promoting CHD Awareness in a large group like Facebook is a great thing. But it is not only for education – with luck, we can find other people in the same boat that we are in. Someone who can toss us a rope when we need it.

One of the best scenes from the TV show The West Wing occurred when Leo McGary (Played by the late John Spencer) told Josh Lyman (Bradley Whitford) the story about the guy who fell in the hole. His friend came along and dove in the hole with him! “What did you do that for? Now we’re both in the hole!” the first guy said.

“Yeah, but I’ve been down here before, and I know the way out,” the friend answers.

Sometimes you have to have someone who has been in the hole before.

If you’ve never seen the original scene from The West Wing, view the video below.