Second Hand Heroes

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.

Helping our friends

In case you haven’t noticed – who could miss it – the US Economy is still weak. And I know from personal experience that community based organizations are the first to take a financial hit: I voluntarily left a small agricultural museum when we were struggling. After the events of September 11, 2001, tourism dropped dramatically and we were barely hanging on.

But that was then and this is 2009. Smaller support and advocacy organizations are feeling the heat. Donations are down across the board. A friend works with a community food bank, and according to him, “We’re keeping the lights on and not much else.”

So… how’s your Congenital Heart Defect (CHD) support group doing? They may have a policy of not releasing financial information, but if you have been a member for any length of time, you can tell. But I know from experience that a lot of them are hurting – and they are cutting services to the bone, just trying to survive.

Your CHD organization would certainly appricate a donation, and every little bit helps. To be completely honest, I’m going through my own money crunch right now and I haven’t donated to the ACHA in a while… but as soon as I work this out, I am going to.

Another thing that you can do is learn how to share your story. With everyone cutting back, your support group’s Outreach and Advocacy programs have certainly been reduced. No one’s telling about all the great things that they are doing and the people that they are helping.

And that’s where all of us can help. If you have a CHD or you are the parent of a Cardiac Kid, you’ve got an amazing story to tell. Think it through, write it out, and learn how to 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 battle with you; and they are there for you through thick and thin. This time they are hurting and its only right that you come to their rescue.

There are approximately two million of us living with a Congenital Heart Defect. If we all start telling our stories, we can raise awareness and help our support groups survive the economic downturn.

It’s up to us;

Connected

UPDATE: As of 6:00 PM Eastern, Katie is out of surgery. Click here to go to her blog for more information.

It’s been an interesting day. Even though I’m here in South Carolina, I’ve been following Katie’s surgery, checking her website for updates. Judging from my website stats page, quite a few people are also keeping up with her by clicking through from here to her blog.

The Internet has given a whole new dimension to friendship and concern. In 1967 and 1977, when I was a long way from home having surgery, all my friends and family had no choice but to wait by the phone for updates. In ’67, no one had even thought of a home answering machine, (as far as I know) so you pretty much had to be there or you missed the call. The first time it was just the three of us, but in 1977, my church passed the hat and collected enough money to send my pastor to Alabama to be with us for a few days. He arrived the day before the surgery, stayed for 3 days – they got up enough cash to pay for a hotel room, too – and then he flew home. I didn’t find out until later that someone (and I still don’t know who it was) gave him two rolls of quarters so he could call home with any news. And in those days, you had to find a pay phone. But since hardly anyone had a cell phone (I had never heard of one) there literally WAS one on every corner.

Websites are active 24 hours a day (unless the server goes down, which occasionally happens) and e-mail is almost instantaneous, so we can find out what is going almost as soon as it happens. Sitting in a waiting room waiting on someone to let you know how a surgery is proceeding is a mind numbing kind of loneliness; having friends to share the burden doesn’t seem to make it any easier. When it comes down to it, it’s just you and the clock.

Rodney Dangerfield once said, “I’m having heart surgery; if everything goes right, it will take about four hours. If it goes wrong, it’ll take about thirty minutes.” Rodney was only half joking; you mentally note the time your loved one was taken from you and watch the clock. If you don’t hear anything for a while, you’re relieved: apparently nothing has come up that would alter or cancel the planned procedure. But if they are gone too long (and everyone has a different idea of how long is too long) your worrying again. Something’s up… it’s taking too long. There must be a problem. What’s going on? It’s a natural reaction.

You have family and friends there with you, and those who can’t be there but who call in to check. Hopefully they are doing all that they can do to support you. Your internet friends  – many of them you have never met – are “standing” with you too. Because “alone we can do so little; but together we can do so much.” (Helen Keller)