Before I share my story, I want to clarify that the title of my book, “The Bigs,” has nothing to do with Marfan syndrome. “The Bigs” is slang for the big leagues in baseball. I gave this title to the book to inspire young people who are aiming for the big leagues in the world of business. The fact that many people with Marfan syndrome or a related disorder are big (or rather, tall) is just a coincidence.
The first time Marfan syndrome really made its presence felt in my life - there was nothing half-hearted about it. While I had always realized that I was taller and thinner than others, and my breastbone was different from other people, none of that seemed crucially important...everyone was different from everyone else in some ways...and these happened to be my ways. In other words, at that point, I had never heard of Marfan syndrome.
However, that benign view of my "differences" changed in an instant on October 20, 1992. I was thirty years old, married, with two daughters (ages four and two months). Life was good, but challenging. Not only was my family changing (growing), but also I was two years into a career experiment as I was trying to switch from being a salesman to a trader on Wall Street.
On that day in October, as I sat at my desk, my chest suddenly exploded in pain. I didn't know it at the time, but Marfan syndrome had caused my aorta to dissect and I was about to die. After a quick trip to the local ER, and my wife, Leigh, insisting I get immediate medical attention, I was helicoptered to the nearest hospital that had a heart and lung machine. I made it there with minutes to spare. Since then, I have had six more surgeries to repair the damage done to my aorta that day. It has been a long and painful journey and it is the reason I am so passionate about early identification of Marfan syndrome - so young adults can have planned aortic surgery - rather than die or need to have their entire aorta replaced.
Despite all the surgeries, and failing as a trader, I have been very fortunate. After that first surgery, I went back into sales and ultimately became the CEO of my company. I was blessed with one more daughter, and Leigh and I are about to celebrate our 29th wedding anniversary. My girls are all growing up with one having graduated, one in, and one going to college next year. I just wrote about my experiences and how students can "survive, thrive, and have fun in the real world." The name of the book is The Bigs (www.thebigswebsite.com).
While the book is focused on helping all students and young professionals, my life with Marfan syndrome certainly is a central story
which runs throughout.
I think most people don't take the time to reflect on their personal journey and all they learned along the way. That was certainly true for me before I, really by accident, began writing this book. It is an experience I recommend to all who are so inclined. And, regardless of whether or not writing is "your cup of tea," I think all members of the Marfan and related disorders community (and especially students, young professionals, and their parents) will get a lot out of reading The Bigs.
I will be at the annual conference this year at Johns Hopkins and I will give a free copy of The Bigs to all households in attendance. (For all others interested, the book is available on Amazon.) I will also share more about my experiences on the Living Successfully Panel that closes the conference.
I look forward to meeting many of you in Baltimore this summer.
Warmest Regards, Ben Carpenter