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Survivor & Professional Speaker on Heart Health Advocacy

Archive for 'Blog'

Pop’s Girl

The following is a blog/letter I wrote to my children about my dad, in honor of Father’s Day:


Dear Lorelei, Evan, and Andreas,

There is so much you need to know about my dad, your Pops. To put it frank, he is simply one of the greatest men you will ever meet.

You already know that he can fix anything, from a broken car, to a torn shoe, to a loose button on a shirt. You already know he can create anything, from constructing drawers into a seemingly useless wall, to building all kinds of furniture to organize our belongings, to developing a basement we can use for anything. You already know he will bend over backwards to help out his family and how much he loves all of us, especially his grandkids.

Basically, you already know that Pops is awesome.

What you might not know about Pops is that he is by far the most unselfish person and hardest worker I have ever met. Pops lost his Dad (your Pépère Gagne) at a young age, and as the oldest boy of 5 children, he took on a lot of responsibility to help provide for his family. All of his childhood, he worked a bunch of different jobs to help his mom support the household. When other kids were still sleeping, he was delivering papers. When other kids were playing, he was working in a laundromat. He worked very hard to not only be a great brother, but to also be a father figure.

Pops met Mem’Nise when they were teenagers, and they fell hopelessly in love (gross, I know, but one day you’ll appreciate a good love story). Still providing for his own family, he took on even more responsibilities in order to start a life for the two of them. As they got married and built their home together, Pops continued to put those he loved first by working hard.

Through the years, everyone I have ever met who knows Pops has the greatest respect for him. He has always been valued for his work ethic, honesty, and integrity, and through the years he moved up the ranks in his profession because of these tremendous qualities he has personally and professionally.

I don’t think Pops ever had the dream job he might have fantasized about as a child. I could imagine him owning a carpentry store or rebuilding old cars…but he followed a path he knew would best support his wife and children at the time. Every decision he made was for us. Nothing was ever about personal indulgence.

Now, I loved my Dad every second of every day, but boy did I love him when we went on vacations. It wasn’t because he was bringing on us an amazing trip, which he did, but it was because that was when I saw my dad the happiest. We would count down the days until we left, talking every night what rides we would go on in Disney World or how nice it would be to sit around the campfire. On those trips, my Dad would be carefree and act like a kid. In retrospect, a lot of these vacations were probably not just about giving his kids what he never had, but it was also the chance just have fun…something he didn’t have the luxury to do a lot in the course of his life. Those are the memories I treasure most.

No one deserved to retire more than Pops, and I have never seen my Dad happier and more himself. I feel like I have gotten to know more about who he truly is during these recent years, more so than ever before. Watching him be a grandfather to the three of you is amazing, and it makes me prouder than ever to call him my father.

So, I hope you recognize all the outstanding qualities about your Pops. He has so much to teach you, so please take in his lessons. I hope that all of you instill in yourselves so many of his characteristics of selflessness, honesty, motivation, and compassion. I can only hope to be the provider, parent, and rock that he has always been to me.

Love, Mom



The Fine Art Of Being A Mom

The following is a blog/letter I wrote to my children about my mom, in honor of Mother’s Day:


Dear Lorelei, Evan and Andreas,

Soon after I was unexpectedly diagnosed with a life-threatening heart condition at the age of 17, I opened my college acceptance letter. Opening that envelope was a moment to treasure, affirmation that life would move forward and that I still had so many positive qualities to offer this world, despite no longer being able to achieve my life-long dream of playing Division I soccer.

My mom was so excited for me. She hugged me tightly. “So you’re going to major in Art, right?” she asked.

I remember being startled at her question. I’d thought only a little about what I wanted to spend the next four years studying. Yes, I loved art. I could draw and create for hours on end, and  in retrospect it helped enable me to survive the last few months of pain and confusion at suddenly being told I could no longer perform as an athlete.

My answer was a quick, “No.”

Her face dropped as she questioned why. I went into my rational explanation of how majoring in Art was going to give me a foot forward in any career only if you counted the job of “starving artist.” The conversation reversed the usual situation, with the parent trying to convey that the arts are a practical post-secondary option.

My mom then asked me a simple question. “If you could major in anything you wanted, without worrying about what was to come next, what would it be?”

I closed my eyes and knew, but she sensed my hesitancy.

“Follow your heart,” she said. “The rest will work itself out.”

I entered college as an Art major, and loved every minute of it. During my junior year, my mom called to tell me about a career she had just heard about and she thought I would love: Art Therapy. In speaking to a colleague, she learned about this field in which art was brought into the counseling process. I was sold. It perfectly combined my two big passions, helping children and creating art.

I went on to receive my Master’s Degree in Art Therapy and Mental Health Counseling, and I currently work in a high school as a counselor and art therapist helping youth in need. I love my job. It seems the “rest” certainly worked itself out.

I thank my mom for encouraging me to follow my passion. She has helped me understand that it is taking on challenges that make life worth living. I’m sograteful for her love and support. She has shown me the kind of mom I want to be, and as you three grow, I hope to come close to being the rock she continues to be for me.

Thanks, Mom. I love you.


9 Tips for a Heart Healthier 2009!

There is no time like the beginning of the new year to decide that your heart health is a priority!  Here’s the fact: heart disease is the number one killer in this country, claiming more lives than the next 5 causes of death combined.  The good news is that most heart disease is preventable, and the education and technology exist today for lives to be saved.  Here are 9 ways you can join the crusade to decide that addressing heart health is essential.


1. Become certified in CPR and in using an AED 
The training takes approximately 4 hours…a commitment of time that is well worth the ability to save a life in an emergency situation.  If someone were to experience Sudden Cardiac Arrest, the single most common cause of death, CPR can double his or her likelihood of survival.  A Sudden Cardiac Arrest victim’s chance to live falls by 10% every minute without action.  That means that after 5 minutes without help, there is only a 50% chance of survival, and after 10 minutes there is likely no chance.  Use of an AED could increase the chance of survival by up to 70% or more.  These devices have the ability to detect a person who is experiencing Sudden Cardiac Arrest and can deliver a shock if needed to get the heart beating steadily again.  Children can even become trained in these life-saving techniques.  Contact your local American Heart Association office to find out about trainings happening in your area!


2. Check on the availability of AEDs in your community
Do your schools and their sports teams have AEDs?  Do your community centers and public facilities have AEDs?  Are all places where large numbers of people gather equipped with this life-saving device?  Quick calls to the superintendent’s office, head nurse, city hall, wellness official, etc. could provide you with a wealth of information to make sure your community is taking one of the most important steps to save lives.  If places are not properly protected with an AED, make some noise!  Contact the media and make sure people know that more has to be done to keep citizens safe.  Feeling especially motivated?  Fundraise to place AEDs in key places! 


3. Make an appointment with your doctor and get your physical
When was your last routine physical?  Most people cannot remember…
If you are in this group, then there is no time like the present to schedule a visit to see the doctor.  I know you have 101 things you’d rather be doing with your time or that you think are more important, but here’s the deal: nothing is more important than good health.  It’s important to maintain a personal baseline of health in order for your physician to be able to properly evaluate your body and be able to distinguish between normal and abnormal for you.   Get on that phone and call!


4. Make sure you know everything possible about your family’s health history
Talk to your parents, grandparents, aunts, uncles.  Track the heart disease and other conditions that exist in your family.  Make these ailments known to your physician so they can be put in your medical charts/records.  This will allow you to have a closer medical evaluation with regards to these conditions, an assessment that can keep you healthier both now and in the future. 


5. Evaluate what you are putting into your body
I know it’s hard.  That ice cream sundae looks like a creamy boat of deliciousness.  And, man, that pizza seems like it could be the best thing in your life since Velcro.  But, one of the most important steps toward leading a heart healthier life is simply saying “no”. 
First step: Go through your food cupboards and refrigerator. 
You can’t be tempted to eat bad food at home when there is none to be found.  Replace the sugary, salty, and fattening snacks with fresh fruits and vegetable, whole grain foods, and lean protein.  Increase your water intake, and consider carrying a nice huge thermos to work.  Get rid of the soda!  Your body will have more energy, strength, and endurance when you are giving it the nourishment it truly craves.


6. Get active
Set up a regular exercise schedule.  I know, I know…life is busy, and it is disappointing to learn that driving by the gym does not actually count as visiting it.  We all know that we need more exercise in our life, so here’s a few suggestions to make it work. 
-Take the stairs at work (no elevators!) and anywhere else possible.
-Make up that fun superheroes game with your kids (you know, one that involves running around like a flying machine!).
-Do an exercise program with your kids…lots of kids think it is fun to imitate exercises on TV.
-Walk on your work break.
-Reserve a baby-sitter for a couple of hours on at least two days per week to get in that sweat-drenching, uninterrupted, long workout you need (many gyms offer kid-sitting services too!)
-Instead of just going to little Katie’s practices and games, coach them if you can!  Running around during a kids’ practice can be exhausting and fun.
-Make a plan, but don’t beat yourself up if it doesn’t work.  You planned for an hour at the gym this morning, but everything went wrong. You’re left with 20 minutes.  Don’t give up on your workout: use those 20 minutes…it’s better than no minutes.


7.  Get rid of the stress
We have people, jobs, and situations in our life that certainly cause stress.  We also have the power to say “yes” or “no”.  Assess how you can remove stressors in your life that are taking a toll on your health, whether you realize it or not.  Figure out the little ways to unwind throughout the day too.  Stretch out your muscles during those couple of free minutes during the day, every chance you get to release a little tension.  Learn some deep breathing and relaxation techniques.  Maybe check out some yoga classes?  Massages definitely hit the spot too…


8. Be informed
Know the possible symptoms and risk factors that exist for heart disease and underlying heart conditions.  You should have your heart checked if you experience any unexplained dizziness or seizures; unexplained fainting or light-headedness; discomfort, pain, or pressure in your chest; unexplained shortness of breath when exercising; unexplained excessive fatigue; or anything else that seems peculiar.  Know your own body, and know your own numbers, meaning blood pressure, glucose, cholesterol, etc.  It is also important to know that women have different symptoms and numbers than men.  Women are not simply small men, but rather women are made differently and need to understand the role these differences can play. 
Also, check out the amazing resources that are available to you.  There are great websites and learning tools to help you learn more about Sudden Cardiac Arrest, heart disease, and how to stay healthy.  Learn more!


9. Educate and motivate others
The only way we can save more lives is for more people to be educated and aware.  Spread information about heart disease, Sudden Cardiac Arrest, and how to maintain a healthy heart.  Encourage your family members to make healthier decisions…it is often much easier to lead a healthy lifestyle if you are doing it as a team. 


10.  Stop smoking!
I just couldn’t stick to 9 steps.  Smoking needed to be addressed.  We all know why you should stop.   Please, please…for the love of your family and yourself, kick the habit!


Moving forward with the smallest steps can equal huge results.  Set a list of goals for yourself, and decide that your health, your family’s health, and your community’s health are worth it!


Don’t do it!  Don’t confuse Sudden Cardiac Arrest (SCA) and a heart attack…it drives me crazy!!  These two often get confused, but be assured, they are extremely different.  Let’s break it down…

Let’s think of a heart attack as a problem with the plumbing.  A heart attack is caused by a blockage in a blood vessel, and it can happen as a result of multiple reasons (or combinations of reason) including poor nutrition, lack of exercise, and family genetics.  This blockage, made up of plaque from cholesterol and fatty materials, prevents blood and oxygen flow.  Once oxygen can not circulate, part of the heart muscle dies. There is a decent chance of survival from a heart attack depending on how fast you receive medical treatment.  Heart attacks are more typical in older adults.

Sudden Cardiac Arrest, however, we’ll think of as a problem with the electricity.  SCA occurs when there is an abnormal rhythm to how the heart is beating, and the heart just suddenly stops beating altogether.  There is an extremely low chance of survival with an SCA, with some estimates saying less than 7%.  In adults SCA can occur from a variety of reasons, including as a damage done by a past heart attack.  With young people, however, SCA is typically caused by an underlying, often genetic heart condition that may not have any symptoms or warning signs.  It’s the stories of young athletes dropping dead unexpectedly and tragically on the field.  It’s the stories of the little children who don’t wake up in the morning.  And now it’s thought to be the stories of some of the SIDS victims out there.

Understand how different a heart attack and an SCA are??  When we hear the stories about a young person dropping dead from a heart attack, chances are this was misreported.  We wouldn’t make the mistake of saying a woman died from breast cancer when she actually died from lung cancer.  They are both heart issues, they are both cancers…but that doesn’t make them the same.  They have different causes, manifestations, and effects.  Join my crusade in educating people about these differences!  Through personal research and teaching others, we empower ourselves to lead healthier and stronger lives.


Simplify Your Health

Sometimes we overwhelm ourselves. 


Yes, I know…you’re saying, “Duh, Michaela…I do that every day.”


There are just so many things that we “should” do in our lives.  Ladies, especially, I know how it is…work your full-time job, do your tasks and upkeep around the house, take care of the kids, pay the bills, participate in a bunch of other stuff (PTO, youth soccer, Board meetings, volunteer work, fundraising, etc., etc.)…the list goes on.


Oh, and by the way, you are supposed to eat healthy (What do you mean on-the-go-food is unhealthy?!?!), get to the gym every day (Does driving by and looking at it count?), not be stressed (Why would I be stressed?  Oh, my God, I forgot to pick up Timmy from school!), and look good (or keep picking out that same black outfit that hides the extra pounds).


Is this even possible?!?!  You know what you are supposed to do, but how does anyone really have time to do it?


Here’s one idea: Simplify.


Take that step back and realize that the smallest steps can make a difference, and that your health does need to be on that priority list. 


Here’s some thoughts:

-Buy a nice huge water thermos and drink extra water all day at work.

-Take the stairs at work (no elevators!) and anywhere else possible.

-Make up that fun superheroes game with your kids (you know, that involves running around as a flying machine…race your kids!).

-Do an exercise program with your kids…lots of kids think it’s fun to imitate the exercises on TV.

-Get rid of the soda and junk food!

-Walk on your work break.

-Stretch out your muscles during those couple of free minutes during the day, every chance you get to release a little tension.

-Learn some deep breathing and relaxation techniques.

-Pick out fresh fruits and vegetables whenever possible…and keep only healthy snacks on hand so you won’t be tempted when you are hungry or stressed.

-Reserve a baby-sitter for a couple of hours on at least one day per week to get in that sweat-drenching, uninterrupted, long workout you need (many gyms offer kid-sitting services too!)

-Instead of just going to little Katie’s practices and games, coach them if you can!  Running around during a kids’ practice can be exhausting and great!

-Make a plan, but don’t beat yourself up if it doesn’t work.  You planned for an hour at the gym this morning, but everything went wrong. You’re left with 20 minutes.  Don’t give up on your workout: use those 20 minutes…it’s better than no minutes!


The important point is to do something.  Moving forward with the smallest steps can equal huge results.  Set a list of goals for yourself, and decide that your health is worth it!


I recently had a class in which our topic and discussion revolved around grief, death, and loss. The professor explained that while this could often be a subject considered taboo, it was something that everyone was going to experience in his or her life. It was something that should be explored and confronted. He went on to assert that every day needs to be cherished, and you should change yourself to be the person you want to be remembered as.

“When you are driving in your car, do you look through your rearview mirror to drive forward? Give this a try when you get home, and let me know how it goes,” he joked.

He explained that we look through the front windshield to move forward. The rearview mirror is there for glancing, a way to check on where you’ve been, what might be coming, and how to make a better decision. It’s the same way with life. We need to look forward in order to move forward. We can’t change where we have been, but we can certainly steer our car in a new direction.

Now, I don’t think this was the first time I had been introduced to this analogy, but for some reason this time it really made me reflect. It’s really difficult sometimes to move away from the people we are and habits we have. It’s easier to maintain the course we have had for so long.

There is always a new day, though. There is always a chance to stop and say, “I have this moment to either reflect on what was, or what could be.”

This, of course, can be applied to the way we treat others and the morals we have in our lives, but it is also relevant to our health. It’s important to hear yourself say: “I have the choice to take care of myself from this moment on. I have the choice to eat well, see my doctor, exercise, stop smoking, and reduce the stress in my life. I can let myself remain in the lifestyle that my past has produced, or I can design a new existence for myself…and it can all begin at this very moment.”

So, next time you’re driving, take a glance back in that mirror. Are you happy with where you’ve been? Most importantly, where are you going next?


Can I dance?  Two words: Hell no.  Now, I’ve been known to shake my booty and get down at a family wedding, but I’m pretty sure it’s not overly graceful or rich in talent.  In fact, I’m sure it’s entertaining on all the wrong levels…like the ones that involve hysterical laughing.

The thing is, it’s fun!  You sweat, you laugh, you feel the burn, and most of the people around you look just as silly.  So who cares?!?

On a recent vacation, I decided to attend the Latin-inspired dance classes that were being offered.  What did I have to lose?  It’s not like I was going to see any of my fellow dancers again, and vacation is always a nice time to try something new and daring (not to mention, it’s also a time when my pants might get a little tighter on me if I’m too lazy).

What a blast!  I was a meringue and cha-cha addict by the end of the trip.  The instructors even said I was a “promising” beginner.  Granted, there’s a good chance they might have said that to everyone, but I’ll hold onto it for what it’s worth.  I worked up a great sweat, learned a new hobby, and had the time of my life.  It made me feel so healthy throughout the trip, both physically and mentally, and it’s something I’ve continued to practice since. 

I know the old gym routine or morning run gets old.  I dread the thought of the typical, monotonous, everyday workout.  We all know we have to exercise, so why not make it something to look forward to?  Check out that hip hop dance class at your gym.  Tell your friend you will finally join her kayaking.  Take some regular walks with a couple of friends who make you laugh.  Kick boxing anyone? 

Make being healthy fun!!  Try something new, even if it’s out of character, and I bet you will surprise yourself.  The good time you have will leave you wanting more, and your body and mind will certainly thank you in the long run.


The Courage to Know Your Health

Sometimes it’s easier to simply not know.  Often we choose to live in question, rather than knowing the truth. 

And it BOGGLES my mind.

Despite all the advances in technology and research, some people just don’t want to be told something could be wrong with their health.  Been there.  Done that.  I used to tell myself it would have been much better to not have found out I have a heart condition so that I could have just lived a regular life…but who knows what could have happened had I not followed through with diagnosis and treatment? 

It takes an extreme amount of bravery to squarely look yourself in the mirror and want to know everything going on inside of you.  It takes even more courage to make the appointment to know for sure if you are healthy.  No one wants to experience that moment of bad news.  No one wants to be told they are no longer invincible.  The truth is, though, that even more so no one wants a knock on their door telling them someone they loved has passed away unexpectedly.

My sophomore year of college I was instructed to write an essay about an important personal experience that changed my life.  In my assignment, I explored the moment I was diagnosed with LongQT Syndrome while in high school.  I intensely illustrated every sensation I felt during that moment I was told I have a heart condition that could unexpectedly claim my life at any moment, intricately describing my emotions and the way they played out over the weeks that followed.  The following class my professor “published” our essays into a packet and distributed everyone’s writing project to each other.  It was fun to check out my peers’ important experiences and develop a deeper understanding for the people they were.

That night at 9:30 I got a knock on the door to my dorm room.  There stood Ashley, the girl who sat two seats behind me in class.  The essays were in her hand, and tears were streaming down her face. 

“This is me,” she sobbed.  “Your story is my story.”

For the next hour she told me that in high school they suspected she had LongQT Syndrome because she had passed out during crew season several times.  She was on the crew team in college, but could not find it within herself to finish getting tested.  She lived in fear, and the only thing that scared her more than passing out again was being diagnosed.  She didn’t know what she would do if she couldn’t be an athlete any longer…I knew that feeling only too well. 

I picked up my essay where I had left off.  I told her that I hadn’t been able to play sports, but I had found other amazing attributes within myself.  Eventually I was able to be an athlete again, so there was hope for her too.  The most important thing, though, was that we were both still alive.  Ashley and I were lucky.

We shared many tears together, and she told me it felt so good to not be alone and share her secret with someone who understood.  When she left that night, I thought I had given the persuasive argument of my life.  I felt like I could’ve walked into any debate competition at that point and given it absolute hell. 

Following our talk, Ashley’s mother called my own.  They shared their stories, my mom re-living our family’s experience and giving advice on how to proceed with being examined.

A different Ashley entered my room one week later, a numb robot who told me she wasn’t going to find out if she had a heart condition.  She had thought about it hard.  Crew meant too much to her, and it was better to not know.

I was stunned.  I tried to tell her the same words that had seemed to encourage her only 7 days ago, but my words fell upon deaf ears.

Classes ended for the year a few weeks later, and I never heard from Ashley again.  I would periodically check the crew roster on our school’s website.  Her name remained on it for the next two years.

The whole experience blew me away.  I guess you can’t convince everyone to be aware of their health.  I can only say I try to give it my best shot.  It takes so much strength to take the steps to truly understand ourselves, whether it be mentally, emotionally, spiritually, and/or physically.  Challenge yourself to gain this knowledge, and grow into a healthy individual who gives herself the best possible chance of longevity, health, and happiness.


Rebuilt Dreams

There was nothing I ever wanted more than to play Division I soccer in college.  The moment I stepped on the field in fifth grade for the first time, I loved the game.  I loved everything about it: the speed, the aggression, the strategy, the teamwork.  Right through high school, I was a leader on my teams.  I transformed into a fighter who would do anything (legal!) to support my teammates and perform my best.  There is nothing in my life that has ever made me feel so alive.


During my senior year, two weeks after soccer season ended, I was told I might have a life-threatening heart condition.  My dreams completely shattered.  Six months later it was confirmed that I have LongQT Syndrome, and competitive sports were no longer an option for me.  It twisted and wrenched my heart in a way that no ex-boyfriend could ever come close to doing to a girl.  My passion had been stripped from me. A piece of my identity was simply stolen away. 


Two months later I was asking my doctor if I could get “one of those metal things” put into my chest in order to play soccer again.  He agreed to let me have an Implantable Cardioverter Defibrillator (ICD) surgically placed in my chest and wired into my heart.  The device would keep me safe, and considering my relative lack of symptoms, I could return to the field. 


One month before entering college, I had my first ICD implanted.  I went through rehab and trained in the spring of my freshman year with the Division I UMass Amherst soccer team.  I quickly returned to great soccer shape and gave the game everything I had.  The following summer I showed up for official try-outs, nervous and scared because the doorway to the greatest dream of my life was finally in front of me. 


The coach stood before us all, announcing he would not be expanding his roster as originally intended.  I did the math.  There was one spot left on the team.  He needed forwards, and I played defense.


I worked my butt off that week, and I was cut.  I’d never been cut from a team in my life, and here it was, the one team that mattered like no other to me. 


I concentrated on I what I had, not on what I didn’t.  Being cut from that team was one of the best things that could have happened to me.  I watched one of my closest friends who was on the team flunk most of her classes because of the time and travel involved.  I saved up a good deal of money with an on-campus job, and I was extremely successful in my art major and the UMass Commonwealth College honors program.  I went on to conquer the pageant world, becoming Miss Massachusetts and developing a whole new passion that came from educating others and advocating for heart disease awareness through my personal story.


Dreams are so important, and there are some that may never come true for us.  On the other side of these “failures,” however, can certainly arise an ambition and sense of enthusiasm for something new and meaningful.  Never stop dreaming…just don’t be afraid to restructure and build them as needed.


My Shining Star

I met Matt when he was 10-years-old.  I was volunteering at an adolescent shelter while in college, and it was my first of many experiences in a youth residential facility.  After receiving the proper training, I was instructed to read the files of the children and teenagers living at the shelter.  Hundreds of files later, Matt’s story was still one of the most horrific and sickening experiences of abuse I had ever seen, and it still is to this date.  Not only was it a miracle this child was alive, but you never would have guessed that Matt had known such violence in his short life.


“We’re playing kickball today?  Awesome!!  I love kickball!!”

“You’re cooking chicken for dinner?  Mmmm…that is gonna be so good!  Woo-hoo!”  (The “Woo-hoo” was always my favorite…a classic Matt word.)


Matt loved life, simply loved being alive.  I’ll always remember one of my co-workers explaining to me that Matt was his shining star.  It is so easy to get burnt-out in the human services field and feel hopeless…but then one kid, one shining star, comes along and makes all of your hard work worth every inch of effort.


Matt was different from most of the other kids I have worked with who have similar backgrounds.  Following three years of volunteering at the shelter, I worked for four years at a residential/educational facility for youth, ages 4-19, in need.  Most came from abusive situations with varying emotional, behavioral, and cognitive issues.  Most felt life was not worthy of a positive attitude or the hope that their existence would ever get better.  It was very hard to fault a child for his or her attitude, a child who had never known anything else in life but negativity, violence, and neglect.


Matt has always served as a role model to me, the ten-year-old boy who appreciated everything in life.  Matt has helped me keep a sense of purpose and perspective during those difficult days and trying times.  We all have our days when we feel sorry for what is wrong with us or what we have had to experience.  I’ll admit, I have had moments when I was wondered why heart disease had to happen to me, felt overwhelmed with very emotional work and advocacy, or did not understand the scar on my chest nor the cardiac device underneath it.  The image of Matt’s face in my mind snapped me right out of that attitude.  Life could certainly be worse for me.  The important piece is how I dealt with what life threw at me. 


Our lives can prove complex, our jobs are tough, but look for those shining stars around all of us – those people or those moments that help you re-focus on the amazing life you lead or could lead.  Choose to change perspective, and always remain positive.


Young Hearts

Want to meet some of the most incredible and inspiring people around?  Seek out a child who is living with a heart condition.  I know there are few people I have met with that much resilience and strength…


Last year I was a guest at PACE Camp, a camp for kids who have cardiac devices.  This past Fall I was invited to be a bunk counselor at Camp Meridian, a camp for children with congenital heart defects.  In between all of that, I have met so many outstanding young individuals who refuse to let heart disease define them.  Let me tell you, there is nothing like spending time with these survivors.  Their courage, outlook, and sense of purpose are unmatched.


When I walked across the Miss America stage last year, I was featured all over the media as the “heart survivor contestant who was going to show her big scar in the swimsuit competition.”  I guess we all have to be remembered for something.  At camp, however, there was nothing quite like comparing scars with an eight-year-old who has had open heart surgery, the same kid who thinks your scar is “totally awesome”.  Nothing beats having a 5-year-old who has a pacemaker look up at you and say, “That’s so cool!  Miss Massachusetts has a heart problem too!”  The best part, however, might be sitting in the middle of a group of pre-teen girls trying on my crown who are psyched to know that there’s a chance they could be Miss America one day, heart condition and all. 


Most of these kids have looked death squarely in the face.  They survived the odds.  I’ve watched children who once couldn’t move from a bed climb an outdoor adventure wall.  I have seen young kids with wisdom and maturity beyond their years encourage their peers to be proud of whom they are, to know they will never be made fun of here at camp, and to never give up.  No adult, survivor or not, can offer that sort of love and support.  That’s good stuff. 


I hope I have contributed to their viewing their syndromes with a new sense of hope…but above all, they have given me the drive to continue my work for them and so many like them in our world.  Programs like Camp Meridian give them the extra push to embrace their differences, challenge themselves, and feel at home with those facing similar challenges…not to mention having adult bunk counselors who are all survivors themselves.


Maybe we should all be diagnosed with a heart condition at a young age? (or at least work with some children who have experienced these ailments)…Trust me, I don’t wish my condition or other diseases on anyone, but would we then appreciate our hearts, taking care of them in the best way possible?  Would we gain a new perspective on the value of our lives, our bodies, and the engine that keeps us running despite the way we might abuse it?  There are lessons to learn from everyone we meet in life, and these kids are certainly no exception.


Role Models

Last year I attended the Boston Bruins Go Red for Women night as Miss Massachusetts, and what a night it was… 


I educated people about heart disease being the number one killer of women, I sat in the special seats between the two hockey teams’ benches during the third period (man, did it smell!), and I was able to achieve one of my most secret and desired aspirations…yup, you guessed it – riding a Zamboni.  With the wind and ice chips blowing in my face, I felt like a true superstar.


I met many other heart survivors that evening, including a beautiful girl about 9 years old.  Jenny had an amazing story of overcoming the odds, and we took many pictures of the two of us hugging.  I posted a picture of us on the Miss Mass website, and it quickly became one of my favorites.


This year I returned to the Bruins GRFW night, this time without a crown or Zamboni ride.  Another beauty contestant (not as a survivor, but quite frankly an absolutely gorgeous woman who had me in awe) took the spotlight that night in our advocacy area, and I watched as a girl ran up to her with open arms.  Just as she approached the young woman, she stopped dead in her tracks, her eyes filling up with tears as she looked up.  It took me a minute to recognize Jenny after realizing the full year of growth children are known to accumulate.  Jenny’s mom apologized to the lovely queen, explaining that her daughter thought that she was someone else.  I locked eyes with Jenny’s mom, and she quickly pointed her daughter in my direction. 


I received one of the greatest hugs of my life that night.  In that moment, I realized I had played some sort of impact on this young girl, and I was clueless as to how.  Jenny was crying hard at this point, not letting me go…that just made the tears stream down my own face.  As I held her, her mom who was also crying (I’m sure we caught a few interesting stares from our emotional reunion), told me that Jenny used to look at my website every day to see the picture of the two of us.  She would always tell Jenny when she looked at the picture that she can be whatever she wants to be, even Miss Massachusetts, despite all of the difficulties and challenges she had in her life. 


Wow.  When we think about being a role model, we often think about children we see in our everyday lives.  I never knew the impact I could have on a girl I briefly met once.  You never know who you can inspire, and our actions certainly speak for who we are.  That night kept me so motivated to not only continue educating about heart disease, but also to seek out other young people affected by cardiac conditions as a means to help them view their syndromes with a new sense of hope.  Heart disease does not have to define you.  Rather, it can inspire you to take positive action that can only in turn inspire others.


Simple Actions

Have you ever done something just because you felt it was the right thing to do…and then this seemingly inconsequential action becomes something much greater than you anticipated?


In first grade I met Nicole Safford.  Even at 5-years-old, we begin to discover stereotypes:  the popular know-it-all, (Jennifer Catalano), the tough bad boy, (Brian Beckford), and the one who gets picked on.  Nicole was the one who got picked on.


I’ll always remember that sick feeling in my stomach when Nicole would do something and the other kids would make fun and laugh.  I wasn’t sure what I was supposed to do, but it didn’t seem like I should jump on the bandwagon.

No, instead I approached the most intellectual, wise, perceptive, astute scholars I knew: Mom and Dad.


After all, Mom knew how to get Play-Doh out of my hair (don’t ask …I stand firm blaming my sister), and Dad knew how to make a perfect glass of coffee milk (extra syrup, straw, and if you were lucky, a little whipped cream).  Surely they must know the answer to this icky situation.


I scheduled the family meeting and laid the issue on the table, wanting to know how to solve the problems of the world…or at least the playground. 


My mom told me that not all little girls were as lucky as I was, and Dad said maybe I should stand up to the next person who made fun of her.”  What Mom didn’t say was that she happened to know quite a bit about Nicole’s family life….Nicole never saw her mother who had a drug addiction, her dad was often away on military business, and her grandmother of 68-years-old was raising her and her little brother.  And her grandmother didn’t speak English…which explained a lot about not always being able to understand what Nicole was saying.  In short, Nicole wasn’t as lucky as I was to have a family who cared about her, and that meant I had a responsibility to her.


The next day I told Jennifer Catalano that she was mean and should leave Nicole alone (so there!).  Yup, I had quite a way with words. 


I played with Nicole at recess that day, and by the end of our 15 minutes of academic freedom, two more girls were playing tag with us.  Eventually Nicky became less of the kid to pick on, and our friendship developed.  After a couple of years, she had to move far away because of her dad’s job.  Before she left, she hugged me and told me I was the best friend she ever had.


Every single summer from that year until college, Nicky would call me around July to say hi and ask me how I was doing.


It’s pretty crazy to look back to realize how much impact a person can have with just a few words.  I’ve discovered the same is true with educating people about heart disease.  It doesn’t have to be a huge, enormous action to simply change a person’s life. 


When I was Miss Massachusetts in 2006, I was interviewed for a newspaper story right before I left for the Miss America pageant.  Instead of focusing on the pageant, the reporter and I ended up in a great discussion about my condition, heart disease overall, and how more lives can be saved.  I went to the pageant, had a blast, and came home to an email that was better than any crown could ever be.


A woman wrote to me saying she read the article about me in the newspaper, and my story gave her the courage to go through with surgery to get an Implantable Cardioverter Defibrillator (ICD), the same device that I was given at 17.  She had been nervous and procrastinating, despite desperately needing it.  She figured that if I could strut across stage in a swimsuit and heels with that scar across my chest and device in my body, then she could take the plunge herself.  She thanked me for saving her life, later giving me an update that her surgery went well.  I never heard from her again.


I took a simple step to educate a reporter, and a life was saved.  15 minutes of recess with Nicole Safford became the only source of friendship she had ever known.  Let’s get this straight…I’m no Mother Teresa, but I do recognize we can all take action, even if it’s small.  We don’t have to scale buildings or build mountains to change a life.  Compliment that person who seems down; write that card to a friend just because; educate someone about a health condition.  Recognize that a seemingly small incident could have a significant impact, and that one day someone’s small effort may change your own life in a monumental way.  Be that change to someone else.


I know it’s hard.  That ice cream sundae looks like a creamy boat of deliciousness.  And, man, that pizza seems like it could be the best thing in your life since Velcro. 

To top it off, your gym card has been lost in the war zone of your pocketbook, and that has been holding up as a worthy excuse to miss your morning work-outs…and let’s not even talk about your stress at work.


Here’s the deal, though.  No one truly feels all warm and fuzzy, deep down inside, about making unhealthy decisions for herself. 


It’s hard.  We all have our choices to make, and sometimes they seem beyond impossible.  I’ll throw an idea out there for some personal heart health motivation.  Maybe, just maybe, this can be made easier by trying to put a new perspective on our lives.


Here is mine. 


Three years ago I traveled to the Bukoba region of Tanzania.  With the group Jambo Tanzania, I helped set up a medical clinic out of an abandoned shack.  For most residents of the local villages, this is the only medical care they ever receive.  Many do not survive in between the two year visits.  When I watched children dying of malnutrition, dehydration, and other ailments to which I rarely gave a second thought, I realized I am a lucky lady.


Having been diagnosed with a life-threatening heart condition at 17, I recognize that had I lived in certain other places in this world I probably would never have been diagnosed, and I certainly could not have been treated.  As I held a little girl dying from malaria in my arms, this fact slapped me right in the face. 


Luckily, we were able to save that little girl, and the trip was an eye-opening experience to me.  Don’t get me wrong, though…it wasn’t all stress.  The native dancing and singing were beautiful, the late night festivities were a blast, and the artwork was fascinating.  One of the most memorable moments, however, was meeting a 70-year-old man we were treating for an STD.  He had fathered over 60 children in the local villages and was asking if we had brought any of our American Viagra for him.  It was interesting to try to explain to him the various reasons that we thought he should stop procreating.  Trying to describe our modern concept of child support was a whole additional ball of fun.


So, let’s go back to the fact that we have choices. 


That fact alone makes us very lucky.  We have the ability to choose our foods at a supermarket, rather than scramble for any morsel available.  We have the luxury to choose in which fashion we want to work out, from ballroom dancing classes to kayaking lesson, rather than exercising from the need to run or walk everywhere we go.  We have the extravagance to set up routine doctor’s physicals, the privilege to choose what kind of occupation we have, and the power to say “yes” or “no”. 

We have the ability to give ourselves all the attention we deserve.  It’s a pretty sweet deal, so embrace this freedom.  Find a new perspective that you can put on your life, and find the courage to move toward loving yourself in the best way possible. 


Heroes and Heart Health Advocacy


We all have our definition of heroes.  To some, it’s those superhuman fictional beings with outrageous strength and fantastic skills.  I’ll be honest…I certainly felt like a hero when I was four and used to wear my Wonder Woman underwear.  It was my tip-top secret that on those days I could tear off my pants and save the world if requested…luckily Spindle City pre-school was never attacked by nuclear missiles or assaulted by an evil villain.  My mom might not have been too proud with that phone call.


To other people heroes may be those in the military, warriors who sacrifice their lives to defend ours and show courage in the face of death because they hold the utmost values.  A hero may be a family member who has simply given all of his heart and soul to the people he loves.  Maybe a hero is a historical figure, a person who has made her mark on the foundation of our society.




A couple of weeks ago I was an honoree at Simon’s Soiree, a heart screening fundraiser for Simon’s Fund.  This non-profit organization is in memory of an infant whose life was claimed by LongQT Syndrome, the same underlying and life-threatening cardiac condition found in as many as 1 in 4,000 people…Most are unaware of its existence.  The auctioneer at the event, a local sportscaster personality, unexpectedly posed the question to all of us: “What does being a hero mean to you?”


In his line of work, professional athletes are often credited with this term.  There is an incredible amount of courage attributed to the competitor who parts the seas and leads the way to a World Series championship or a Super Bowl victory. 


Luckily, our auctioneer friend disagreed with the way athletes are portrayed.  He assured us that none of us would turn down the $30 million a year to lead the “difficult” and “valiant” life of a professional athlete.  Where was the heroism in that?


He explained that heroes are the parents of Simon, people who fight through their own pain to prevent others from experiencing grief and loss.  Heroes selflessly push to create change, no matter the personal obstacles, no matter the struggle.  Heroes help other people, whether they personally know those people or not.


His question stuck with me.  I’ve met so many heroes in my heart health advocacy: the man who was saved with an Automated External Defibrillator and now pledges to place them in every school and public facility; the doctors who volunteer to organize a free camping trip for children with congenital heart defects; the 10-year-old girl who had a stroke as an infant and talks to adults about their heart health; the hundreds of parents of Parent Heart Watch who have lost children like Simon and aim to create national awareness of Sudden Cardiac Arrest. 


I guess I’ve come a long way from my Wonder Woman underwear. 

Heroes has been re-defined.  It’s not about our names being in the headlines, and it certainly isn’t about our bi-weekly paycheck.  We all have the capacity to be heroes. 

We all have personal stories that can touch others. 

We all have the ability to create change. 


Define what being a hero means to you, and then become one.