Children's Hospital Speech (07/02/2003)

By: Sean McCarthy

      Thanks and good evening. As Kevin’s mother said, my name is Sean McCarthy, and like most everyone in this room, I’m a congenital heart patient.

   It was about 26 years ago to the day that my parents, who are sitting in the audience, heard this news. I can only imagine the expression on their faces and hear their bumbling responses to the doctor, “single ventricle, dextracardia-what does all of this mean. Our child has congenital heart disease?”

   Over the course of the next two years, a team of doctors would evaluate my condition and eventually make a recommendation on a specific operation. The only problem, this open-heart procedure had never been performed on someone with my specific diagnosis. Needless to say, the risks were quite high, and even scarier, the outcome was uncertain, as there was no track record or model for this procedure’s performance. However, the doctors did offer my parents the option to choose between an operation, which while relatively safe (for open-heart surgery), had an average life expectancy of 20 years and this surgery which placed us in uncharted waters. Feeling it was far worse to lose a son they had known for over 20 years, they opted for the riskier surgery.

   I stand here today, grateful as ever that they chose that surgery. And still despite this, if anyone in this room were to ask me, “Does it scare you that everyday you live a day longer, you are writing another page in the history of congenital heart surgery?” I’d answer no, it inspires me. It inspires me to live a longer, stronger life. It inspires me to work harder in my life—physically, mentally and most importantly, emotionally. It is this third element, the emotional element, that I gain most of my strength from as a congenital heart patient. It is my emotional strength that encourages me to work out four times a week. It is my emotional strength that has allowed me to participate in competitive sports and even win the MidWest Rock Climbing Invitational. It is truly my emotional strength that allows me to live my life not as a congenital heart patient but a normal human being.

   And so, when Kevin’s mother asked me to speak on how congenital heart disease had affected my life, I thought it might be more beneficial to speak on how congenital heart disease hasn’t affected my life. Is this because I’m miraculously absent of all conditions that affect most congenital heart disease patients? No. I certainly suffer from many of the same ailments that affect most CHD patients. But, rather than dwelling on these, the “can’t do’s” as I call them, I concentrate on the “can do’s”. And it is from this list of can-do’s that I’d encourage every heart patient in this room to concentrate on. I certainly don’t know, nor will I pretend to know what this list may consist of for each and every one of you. Every patient in this room has CHD with varying degrees of complexity and thus it will be up to you and your cardiologist to determine your “can do” list. But, it is up to you to define your emotional “can do” list. Each one of us has choice when we wake up in the morning, whether it is from our bed at home, or a hospital bed, to choose a positive attitude, an attitude that will help us persevere over the trials that each day presents, trials that are often further complicated as CHD patients. And it’s not easy, I certainly don’t have the 12-Step Guide to beating CHD. And I’ll tell you what, in all my researching, it just doesn’t exist. But I can tell you this, if it did exist, having a positive attitude has got to count for at least six of those 12 steps.

   Now the other six you may think are a bit more medical dependent, say surgeries, a doctor’s prognosis and on-going treatments and medications—I’d say those are only about half of the other six. The other half, family and friends. As I said earlier, my parents are in the audience, and so is my wife of just over a month. These are the people in my life from whom I’ve not only received support, but have come to rely upon when my emotional strength has dwindled. In fact, one person who is not here today who has provided this support to me over the course of my life is my twin brother. Despite being the twin of a congenital heart patient, my brother, Kevin, was born absent of any medical abnormalities. (We are blaming the poor sense of humor on my dad). In fact, at the present time he is training for a half Iron Man triathalon in CA latter this summer. Throughout his entire life he has been a gifted athlete and I’ve always been his gifted cheerleader. And not once amidst his constant flow of blue ribbons, trophies and plaques have I ever been jealous of his successes. Instead, I’ve encouraged, supported and cheered him on, for I knew these accomplishments were on my “can’t do” list, and I’m just fine with that. He often tells me that he could have never achieved what he did were it not for my support, and for that he views me as his biggest hero in life. I just view it as a “can-do” in life.

   In fact, its just one of my many. Each day I begin to see more and more of my “can’t do’s” hop onto my “can do” list. When I was younger this can’t do list was much larger:

• Couldn't do soccer
• Couldn't do swimming
• Couldn't to to high altitudes, (actually, that is a good idea)

   But as I’ve grown older and the knowledge of congenital heart defects has developed, I’ve found that the doctors have consistently redefined their boundaries as to what I “can do” based, in part, on experiment, and more importantly on whether I’ve asked if I could try it. And that “asking” part, I think is critical. I’m always willing to challenge myself physically, and to the extent I can’t keep up, I just quit. But I was never ashamed of quitting. I was accepting of it. And I still am accepting of it, everyday. I’d encourage every patient to be accepting of who you are, and truly, don’t dwell on who you aren’t.