Posts Tagged ‘advocate’

Grunt Work

November 7, 2010

I was in Philadelphia last April, helping out at the offices of the Adult Congenital Heart Association (ACHA) as they prepared for Lobby Day 2010.  On Lobby Day ACHA members – joined by members of the Children’s Heart Foundation and Mended Little Hearts – gathered in Washington, DC to visit the US Capitol. Our goal was not a sight-seeing trip, but to visit our legislators and convince them to fund Congenital Heart Defect provisions of the new healthcare law.

Knowing the ACHA office would be swamped with work (we had a total of four people in the office at that time) I volunteered to come to Philadelphia a few days early and help out any way I could. Unusually enough, “any way I could” turned out to be…

…. copying, sorting, and stapling.

Wow – that was a classy assignment there, Steve. They must not have needed that much help, after all!

Hardly. The ACHA staff was still setting up appointments with the legislators or their staff when I arrived. 48 hours until we left for DC; 72 hours to Lobby Day, and things hadn’t fallen into place yet. When we weren’t making appointments we were on the phone with our Advocacy Director working out final details. There was also a small crisis with the host hotel that wasn’t resolved until the last moment.

Making legislative appointments for 100+ attendees, smoothing things out with the hotel, working with the Advocacy Director to make sure things were just right… I don’t know how to do any of those things. So I was copying, and folding, and sorting, and stapling – so that the people who do know how to do those things didn’t have to worry about it. Or stop what they are doing to do it.

It’s “grunt work” – the repetitious, mindless type of job that no one wants to do. Everyone there could have done it, but they had skills that I don’t have, so I did the job. My best guess is that I handled 500+ separate sheets of paper. If you attended Lobby Day 2010, your informational sheets were assembled by me. (Don’t worry, I washed my hands!)

This is what advocacy for any worthwhile cause is – the willingness to do the little tasks, the grunt work, the behind the scenes activities that makes everything flow smoothly.

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.

Birth of a CHD Advocate

April 27, 2010

I’ve written about Amy Verstappen’s entry into the world of Congenital Heart Defect (CHD) Advocacy before, but her story is so powerful that you have to hear it firsthand for the full impact. Amy was kind enough to take a few moments on Lobby Day and tell her story once again.

The Other Side of the Coin

April 7, 2010

Despite the fact that the overall time doctors and patients spend discussing medication is going down, there are still doctors out there that will go to bat for their patients. When you find one, grab on and don’t let go… an intelligent, proactive patient coupled with a doctor who goes above and beyond the call of duty are hard to beat!

That’s one reason I love my Adult Congenital Cardiologist and his team at Emory University Hospital. There have been some changes recently that make it a little harder to get in touch with them than in the past, but these all seem to be because more and more patients are being seen. (That’s great news! More and more of us CHDers are hanging around!) But they will get back in touch with you, especially if it seems that a problem is developing. I’ve had the Nurse practitioner that works with my doc to call me at 8:00 PM at night – say, don’t you people ever go home?!?!

Laurie Edwards knows just how important it is to have a doctor who is on your side, and she give us a good example – not by bragging on a good doctor, but by showing us the exact opposite. In this case, Laurie has to hold her tongue while a friend lives the nightmare.

The Professional Patient has a good post titled Accepting that you might be like this forever. “Congenital” means occurring at birth, so someone with any kind of congenital problem needs to drop the word “might” from that statement. Even if you have a corrective procedure, you’ll probably have residual effects and need to be monitored all your life. A doctor/advocate can help you not only with your general health and medications, he can go to bat for you when questions arise about your health status. For example, try to apply for any kind of medical coverage with a pre-existing condition! Even if you are successful, there are going to be forms to fill out and examinations, and someone is going to want to look at your medical records. It is going to be a pain in the *ahem* – but having a medical professional who will handle their part of the paperwork quickly and efficiently will make the road a little smoother.

When you find a good doctor – grab him and don’t let go!

A Personal Mission: Molly Nichelson, American College of Cardiology

February 15, 2009

Molly Nichelson is an Issues Advocate for the American College of
Cardiology
(ACC) in Washington, DC. Part of the ACC’s Federal
Grassroots Outreach, her usual job involves helping members of the
American College of Cardiology become involved in political issues. But on Lobby Day 2009 her assignment was more difficult: Molly had to
transform 200+ Congenital Heart Defect Survivors, Cardiologists, and
their families into CHD Advocates, then turn them loose in the halls
of Congress.

Lucky for us, Heart Defect issues are her passion. Molly’s sister was
born with a Congenital Heart Defect, Coarctation of the Thoracic
Aorta
, along with transversed organs. Despite these challenges,
Molly’s sister has survived two open heart surgeries and at age 27 has
a child and is “doing great!”

“As far as my own family was concerned, it was a lifestyle change for
us, making sure we watched her, hypertension issues, but through
medical intervention she’s really doing fantastic,” the proud sister
and aunt says. “The medical advances are astounding. So for me, our
family views a lot of physicians as heroes.”

“I’ve worked in government relations all my life,” Molly continues.
“When I first started with the American College of Cardiology it was a
passion of mine to work with people with Congenital Heart issues. It’s
something I’ve been doing ever since.”

Growing up in a family affected by a Congenital Heart Defect, she
understands the best way to guide a Cardiac Kid. “As a sister of
someone who has a heart defect, I would say don’t treat them [children with Congenital Heart Defects] any differently. That was an important thing growing up, she can achieve a lot of great things. She has a child, a family, a great career, and a lot of it is due in part to really wonderful, caring, passionate doctors. I like to think that the American College of Cardiology is a great home for fantastic physicians who are  really passionate and really care about their patients.”

Molly’s attitude becomes more businesslike as she discusses an
upcoming issue facing Americans: “It’s going to be very important for
patients to keep abreast of what’s happening on Capitol Hill,” she
advises. “Read your newspaper, keep following up, see what
associations like the American College of Cardiology and different
organizations are doing in regard to health care reform. Stay engaged,
read a lot, and learn about what is going on.”

Good advice, from someone who is in a position to know… and obviously cares.

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!

Tell your story: How to make it simple

December 3, 2008

So you’ve decided it is time to speak out about Congenital Heart Defects. Thank you! The more of us who are willing to tell our stories, the more people understand that we live normal lives, yet we still need specialized medical care. And better insurance. And a National Registry. And a host of other things, but we don’t need you to feel sorry for us.

The very first time you stand up to speak, you’ll feel like you are standing on the ledge of a very tall building. Relax (if you can!); it happens to everyone. And the more opportunities that you have to share your story, the more comfortable you will become. Until then, here’s a few tips to remember:

Dress the part – If you know you’re going to be speaking, then think of yourself as an invited guest and dress like one. There is no rule that says you have to be in a coat and tie, but if I know that I’m speaking I’ve got on nice slacks, a clean shirt and a sportscoat, at least. Even if you don’t expect to speak, don’t dress like you just walked in from the gym. It just doesn’t look good.

Tell YOUR story – You have a unique set of experiences that very few other people have. Your audience wants to hear about how you or your child deals with having with a Congenital Heart Defect.  Give them what they want… it’s that simple!

Speak for eight minutes — Work your speech out to the point that you can deliver it in eight minutes, if there aren’t any interruptions. Eight minutes is long enough to get your point across and short enough not to bore your audience to death. If your audience laughs or applauds, pause and let them finish. Audience interruptions will only stretch your speaking time to about ten minutes, and that’s perfectly acceptable. There will be times when you can speak longer, but eight minutes is just fine.

Go Fishing – Hook ’em and reel ’em in! Catch your audience’s attention the moment you begin. If you’ve read Funky Heart, then you probably know that my third heart surgery went wrong when they cut my chest open. So I begin by saying “I’m probably the only person in the room who has had two and a half heart operations!”

Describe your heart – Have a simple way to describe your heart and what is wrong with it. Amy Verstappen describes her heart as a house that has some major construction problems: Rooms are in the wrong place, the hallways don’t line up with the doors, and the windows stick. I describe a healthy heart as a circle split into quarters… and mine has a good chunk of the lower right section missing, along with some holes in the walls. Find a memorable way to describe your heart!

Remember what’s important – With only eight minutes to speak, you have to hit the important stuff quickly. So you should limit yourself to…

Three points – But the one point is going to be your “action point”, when you emphasize an action. Sometimes your action point will even be preselected for you: at Lobby Day 2007, we campaigned for a National Heart Defect Registry. Your action point can be first (I want you to support CHD research, and here’s why…”) or it can be last (“I’ve told you all this to ask something of you…”). So decide what your action point is going to be, where in your speech you want to present it, and build around that.

Don’t use “Heart Speak” – When you have the opportunity to speak to a group that has little experience with Heart Defects, stay away from the “verbal shorthand” we use. Saying that you have Tricuspid Atresia makes perfect sense to some people, but it won’t mean a thing to others. Even when you are speaking to CHD groups, you should explain any technical words you use. A Heart Mom with a child who has Hypoplastic Left Heart Syndrome may not know what Tricuspid Atresia is… her Cardiac Kid has his/her own problems to worry about.

Pick the right words – I don’t have a Cardiologist. Actually, I do… and he has a partner, and they both have nurses, and someone to answer the phones, and someone else to keep the paperwork in order. So I don’t just have a doctor, I have a healthcare team! And when I need specialized heart care, my healthcare team is my weapon of choice! English has a lot of words that aren’t used very often, so put them to work. They can recapture your audience’s attention if their minds start to drift.

Don’t Rush – There’s an old saying: “Slow is smooth, and smooth is fast.” Don’t rush yourself. Eight minutes is longer than you think. Go slow, be smooth – keep your  “um!” and “You know!” to a minimum –  and you’ll be done before you wear out your welcome.

Don’t Cry – Don’t cry in front of your audience. I know this seems to be the perfect time to show emotion, but the instant that you start crying, the audience stops listening and starts thinking “Awww… that’s so sad.” Their emotions get the best of them too, and it usually works against you.

Finish Strong – Everyone lived happily ever after, right? Unfortunantly, the story doesn’t always end that way. But always try to end on a high note. Jim Valvano, the former Men’s Basketball Coach at North Carolina State University, made sure everyone knew he wasn’t giving up nor was he giving in…. even though he was dying of cancer. “Cancer can take away all my physical abilities,” Valvano would say. “It cannot touch my mind, it cannot touch my heart and it cannot touch my soul. And those three things are going to carry on forever.”