The Heart of a Warrior: A Funky Heart Interview

My friend Eliza recently took time to answer my questions about growing up with a heart defect, exercise, and participating in the Bolder Boulder 10K road race.

Born with Pulmonary Atresia with a Ventricular Septal Defect (VSD), Eliza underwent four heart operations as a child.  “I was never the most athletic kid on the block,” she tells me, “but my parents did encourage me to try lots of things.  Even though P. E. (Physical Education) was never my best or favorite class, I’m very glad that my parents followed my cardiologist’s suggestions and never kept me out of it.”  Eliza participated in ballet for eight years and was on the softball team for a year in middle school.

Her biggest challenge in 4th and 5th grade was trying to keep up when her school participated in the President’s Physical Fitness Challenge. The Challenge exposed her weaknesses: “I remember being reduced to tears when I didn’t understand how I was so bad at sit-ups and the mile run. It never occurred to me that it was because of my heart and the surgeries I had for it.”  Luckily she had a great P.E. teacher  in elementary school who emphasized that the important thing was to get outside, move around, and have fun.  “(She) told me that if I wasn’t dirty when her class was over, then I wasn’t having enough fun.  I’ll always remember that.”

Eliza also had another Physical Education teacher in high school who “taught me basic physiology, anatomy and the benefits of exercise.  Without those two gym teachers’ encouragement and knowledge, I certainly wouldn’t be as healthy as I am today.”

After graduating from both high school and college, Eliza took internships in a big city and started on a path that would lead her to the Adult Congenital Heart Association (ACHA). Describing those days as “a very dark time,” she tried to deal with adulthood, work, finding friends and doctors in a new city, and the realization that her heart wasn’t permanently fixed, all while being hundreds of miles from home. “I thought that I was entering a whole new, exciting world, but I ended up feeling very alone on so many levels.”

After a false alarm with her heart and without any guidance from her doctor at home, she finally found an Adult Congenital Heart Defect (ACHD) Cardiologist. A month or so after her appointment, she received a postcard in the mail from her new doctor with information about the Adult Congenital Heart Association.  She was curious to find out how other adults with congenital heart defects managed their health and how that worked in their lives.

Returning to Colorado, Eliza got involved with the group that would eventually become the Denver-Metro Area chapter of the ACHA. Little did anyone, especially Eliza, know what would come next!

Boulder, Colorado is the home of the Bolder Boulder, a 10-kilometer (6.2 mile) road race through the streets of downtown Boulder. Described as a “citizen’s race” because the majority of participants are not professional runners, the race is organized in staggered starting groups called “waves” that allow people of many fitness levels to compete at their own pace. The minimum requirement is to be able to walk 6.2 miles in two hours.  The event concludes at the University of Colorado’s Folsom Field with a Memorial Day celebration after the citizen racers take their seats in the stands to watch the professionals runners compete in their own 10k event.

“The atmosphere is so much fun!  Besides the huge number of racers, (53,000 participated in the 2009 race) there are radio personalities, belly dancers, celebrity impersonators, rock bands, people with their sprinklers on, Slip & Slides, and neighbors sitting in lawn chairs cheering on all of the racers as they pass.”

And that’s just the bystanders. A good portion of the runners let their sense of humor come out – there is no telling what you’ll see along the course. “There are people who dress up in funny costumes in all of the waves,” Eliza continues.  “There’s a guy in a gorilla suit who is usually in the very first wave.  I’ve seen people in frog costumes playing leapfrog in the walking waves. This year I saw a group of girls dressed like an 1980’s band and another group who was trying to do the race as a 3-legged race.  They have water and Gatorade for the racers at every kilometer and race officials all over to make sure everyone has a safe and really fun time.”

Eliza had been walking the Bolder Boulder course since she was a child, usually with her mother. “The first time I did the Bolder Boulder I was probably ten years old. It was my mom’s idea – she wanted to walk it and thought it would be a fun thing to do with me, even though she is the least athletic person in my family. I walked the race with her on and off for years until I decided to do it for my own health in 2006. “

“That year I invited family, friends and a few people from the local Adult Congenital Heart Defect (ACHD) group.  We thought, ‘Man, it would be great if we could do this and officially raise awareness for the ACHA!’”

ACHA president Amy Verstappen, Eliza and the national staff worked together to create the legal documents needed to make it an official event. The ACHA’s Bolder Boulder team was off and running!

“Given the economic climate this year, I am very proud that we raised over $1,300 even though it’s significantly less than what we’ve raised in previous years.  In 2008, we raised over $3,000 for the ACHA.  This year we had a record number of ACHA racers – 24!.”  (That number includes both Congenital Heart Defect (CHD) Survivors and supporters.)

A handful of ACHA members and supporters have come to Colorado from out of state to participate in the festivities. This year, there were people from California, Ohio, New York, Illinois, Pennsylvania, and South Carolina.

While those numbers are impressive, they’re not the essence of the event for Eliza. “Since I decided to do it (participate in the Bolder Boulder) for my own health, it’s been a positive goal that’s kept me exercising regularly,” she says. From her enthusiasm when she talks about it, you can tell Eliza is happiest about getting other CHD survivors to be active. “I’ve been thrilled to find out that our participation not only inspires our racers, but also people across the country and other ACHDers who aren’t quite able to do a 10k to figure out how to incorporate some exercise into their lives. I love that something that started out as a personal goal for me has mushroomed into an avenue and an inspiration for so many in the ACHA to be as healthy as they can be!”

As Adventures of a Funky Heart! readers know, I often ask interview subjects, “Do you have any wisdom or advice for young parents of Cardiac Kids?” Eliza didn’t disappoint:

“Medical interventions like surgery and caths (Catherizations) can help our hearts to function more normally, but that willingness to get out of the house, to get up when we fall down, to actually move around and exercise itself is what strengthens even hearts like ours and gives us the confidence, mental and emotional fortitude to manage our heart health as we get older.”

“For everyone, but especially for kids with CHD, exercise isn’t just about moving your body and making is stronger.  If the adults around you have the right attitude, it’s about having the self-confidence to try another way when you reach a roadblock.  It’s about learning to maintain and trying to top your own personal best. It can be about learning to be part of a team.  It’s about kids (teens and adults too) who have known what it’s like to feel incredibly physically weak and vulnerable, finding ways to feel physically powerful, able, strong and independent.”

As far as specific advice, Eliza says, “Anytime they are excited about doing something physically active, go with it! As long their cardiologist thinks it’s healthy for them, let them do the mile run – even if they end up being the last person who finishes it. It’s even more important for us to learn how to handle minor scrapes & bruises than most people because we’ll face so many physical challenges in our lives.  Resist the urge to run and pick your kids up immediately when they fall.  We need to learn that resilience. Let them climb trees. Let them fall and scrape their knees. ”

Eliza reminds us of a very hopeful statistic: “At least ninety percent of children born with congenital heart defects today will be adults someday. Always assume that your child will be in that ninety percent and treat them accordingly. Don’t forget to daydream about what you hope to do with your child and the kind of person that you hope they will become.”

ENDNOTE: Eliza was recently accepted into graduate school to study health promotion, partially inspired by her love of enabling CHD Survivors to challenge the Memorial Day race over the last few years.  She’ll be leaving the Denver area, but I’m hopeful that no matter where life takes her, she’ll always find her way home just in time to take on the Bolder Boulder!

I hope you’ve enjoyed meeting my friend;

The back of Eliza's 2008 Bolder Boulder shirt

The back of Eliza's 2008 Bolder Boulder shirt

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17 Responses to “The Heart of a Warrior: A Funky Heart Interview”

  1. Kelly Says:

    Yahooooo for Eliza and all her strength! Thanks Steve…so inspiring to this heart momma. Thanks for the lift

    • Anonymous Says:

      Ellen says on July 6, 2009 5:00 PM MST, as the grandmother of this amazing young woman, whom I knew from the 3rd day of her life; now she is off to gradschool to continue her work on Health Promotion. All my love to you dear Eliza, I know you will do a great job.

  2. Tom Says:

    Awesome! One thing that jumped out at me is that I was told growing up to stay out of PE and group sports — although I was mildly encouraged to do individual sports (like tennis) — so I wouldn’t be disappointing a whole team with my supposedly less than average performance. Now that I’m 40 and have a cardiac kid of my own, I see the grave error of that advice.

    I’m ashamed that I didn’t make more of an effort to be in the Bolder Boulder this year. Next year I will make it!

  3. Andrea Himmelberger Says:

    Loved this story of hope and perseverance! Thanks for sharing!

  4. Eliza Says:

    Steve did an excellent job!

    The link for PA & VSD looks like it might have an ASD too, but otherwise it is a very good representation of what I was born with. I was *very* lucky to have two very well-formed pulmonary branches. Without those there isn’t too much the doctors can do and the prognosis is very, very different than mine.

    You don’t need to be ashamed Tom!
    …I’ve had more years where I walked the whole thing than I’ve had years where I’ve jogged even some of it! Our biggest contingent of ACHA members & supporters is always the walkers so far. It’s hard to judge medical advice from back in the day when they really didn’t know what we were able to do or what would happen… At the time they probably thought that was what was best for you! Now that we have more information, you totally still have the power to use it for your own benefit & your kid’s! :)

  5. betsy Says:

    As the aunt of this amazing young woman I am very proud of ALL her accomplishments. I’m thrilled that she’s turning her “defect” into an asset to help others. After graduate school I know we’ll hear more from her.

  6. Nicole Says:

    Eliza, a wonderfully inspiring story which brought back many memories for my own P.E. days as a Tet. Kid. My P.E. teachers were never as gracious, always pushing me and either punished or laughed at me when not passing that same PE Test which you mention. Never mind, me though, I showed them, band became my PE, softball for 10 years as well as marching with the largest horn I could find!! =) Now at 40, I am beginning to realize why I am such a little “fighter.” ha ha!

    Steve, you have a gift with words. In 2 years of searching for an inspirational story this is the first I’ve come upon; one with which I can truly connect. Is Eliza on twitter? You seem to know everybody; is there a group meeting I don’t know about? ;^) Thank you both for this encouraging recount of your journey, Eliza!

    • Eliza Says:

      Anyone interested in a local ACHA group – You can call or e-mail the ACHA’a HQ in Philly & they can tell you if there’s a local group in your area. 1-(888) 921-ACHA or info@achaheart.org.

      Nicole, Honestly, stories like ours are more & more common these days in the ACHA as the kids who were born in the late 70’s & 80’s reach adulthood and look for others like themselves.

      Betsy, Thanks! xoxo

  7. Denise Holley Baldwin Says:

    She is an inspiration to all…as are you Steve!

  8. Sharon Says:

    Eliza, you rock, girlie! You are an inspiration to many–and an incredible motivator & organizer. I’m fortunate to have you as a friend. Many of us will miss you when you’re off to grad school–but keep those running shoes ready for next May!

    And Steve, it is an honor to have sat with you & chatted and got to know you. Bless you for coming to Colorado to participate with us! Thanks for your many efforts to get more of us ACHDers connected in new ways.

    As a “cardiac kid” born in the 50’s, my parents, and then I, have frequently had conflicting & confusing medical guidance & restrictions over the years. Eliza is right–“they” didn’t know what to advise or expect in the past. But finally we’re getting the word out, the data collected and the evidence needed to best help inform & encourage strong, quality lives. Keep on pumping :@)

  9. The Will to Win « Adventures of a Funky Heart! Says:

    [...] in Florida – her name is also Eliza, I didn’t mention her name previously because I had Heart of a Warrior ready to post and I didn’t want to confuse anyone – is still in the hospital. [...]

  10. Mike Says:

    Great story! Keep up the great work, encouraging everyone to focus on what they can do, not what they can’t do!

  11. Patients for a Moment #2 « DUNCAN CROSS Says:

    [...] at Adventures of a Funky Heart sends in The Heart of a Warrior: A Funky Heart Interview – a conversation with a particularly perserverant [...]

  12. A New Audience! « Adventures of a Funky Heart! Says:

    [...] blog carnival, “Patients for a Moment #2” stops by Adventures of a Funky Heart! to read Heart of a Warrior. Duncan just got Patients for a Moment up and running a few weeks ago, and he’s hopeful it [...]

  13. My hope for Trevor | Trevor's Allstars Says:

    [...] reading this interview http://tricuspid.wordpress.com/2009/06/16/the-heart-of-a-warrior-a-funky-heart-interview/ I was very moved and hopeful that Trevor will have encouraging people in his life like this woman [...]

  14. Samantha Says:

    Thank you! I have a little heart hero toddler, and I am so encouraged by Eliza’s story and advice to parents.

  15. The Long Walk « Adventures of a Funky Heart! Says:

    [...] that “there’s more than one way to skin a cat!” As a fellow Heart Warrior said in an interview published on this blog: “…its about having the self-confidence to find another way when you reach a [...]

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