03/30/2010 05:12 am ET Updated Nov 17, 2011

When Fitness Is Not Enough

On October 5th 2009 I underwent open heart surgery ... voluntarily.

Let me set the scene: I'm 41 years old with two young children at home and have spent the better part of my personal and professional life in the fitness world. I eat, sleep and poop Pilates, have regular bodywork sessions (massage, chiro, energy, etc.) and am the parent on the playground seen swinging from the monkey bars with my kids. Eleven years ago I receive a phone call at 2AM that my brother, an even bigger sports enthusiast than I, while on a ski holiday, was rushed off the mountain and into an O.R. for emergency open heart. What we found out was that my brother, my mother and I all carry a genetic mutation called Marfan's Syndrome, which up to that very day I heard about it I had never heard mentioned before.

Turns out that Marfan's is a disorder of the connective tissue in the body which, basically, holds us together. Kind of important stuff. Marfan's is most often seen in very tall, slim people and one of the main discerning features in having a wing-span (fingertip to fingertip) that's longer than your height. Flashback to my whole entire childhood when "lanky" was my identifying adjective -- with some very awkward Polaroids left for posterity -- but who knew I was a wingspan away from a disorder!

It affects about 1 in 5,000 and lays claim to some rather famous sufferers ranging from Jonathan Larson (the Rent playwright) and singer Joey Ramone to U.S. Olympic Volleyball team captain Flo Hyman and right the way back to suspected carriers Abraham Lincoln and Mary Queen of Scots -- although, obviously, Marfan's cannot be held accountable for assassinations and be-headings! New to the table is talk surrounding Michael Phelps as a possible candidate as well. (Could that have been medical marijuana, Michael?)

So, I had always been convinced that this disease would never really get a hold on me and that I could beat the odds -- after all, my Pilates training kept me fit and hyper-body conscious at all times. I was told that I shouldn't get pregnant (a high number of dissections occur in the months directly following labor) and yet I went ahead and had two nine and a half pound babies without resorting to the prescribed C-sections. (Another story, but, man was it was strange to have to fight for the right to have natural births!) While I obviously bucked conventional wisdom for my own superhuman delusions, all the time I monitored my aorta with the help of my cardiologist, Marfan's expert, Dr. Richard Devereux, and remained impervious to the idea that I might not be able to control my own bodily tissue.

As I found out Marfan's manifests itself in aortic root aneurysms, dissections and ruptures, meaning that the tissue of the aorta -- the body's largest artery -- weakens, bulges and finally tears or rips. Because of this fact there is always a need to monitor the aorta for growth beyond a safe diameter, and then to take preventative measures to protect the tissue before an unexpected tear causes the aorta to bleed out and become fatal. Scary stuff! To this end I have been having echo cardiograms regularly for the past nine or so years but never tapered my boot-camp, cardio Pilates style as I was often advised. I watched my mom go through the surgery, preventively, but had convinced myself that it was her Multiple Sclerosis that made this necessary. After all, someone as fit and aware as I could really never be affected in quite the same way, right?

In 2009 there was a surge of growth in my aortic root and an aneurism (bulge) became evident which -- naturally -- gave me pause. It was recommended that I go for some more testing to determine if it was truly Marfan's or the condition's ugly step-sister Loeys Dietz syndrome (named for the two docs who discovered it) and finally I began to listen. Well, as luck would have it the tests came back positive for Loeys Dietz, which is a more unpredictable and advanced version of the mutation, and left me feeling like a ticking time bomb for most of the rest of the summer.

Because with Loeys Dietz the incidence of aortic dissection is higher at lower diameters I made the difficult decision to undergo preventative surgery rather than waiting for the highly probable to occur. With two young boys to grow up it was the most mature decision I've ever made, but that didn't make the process much easier. I spent the end of summer preparing myself mentally, physically and emotionally for the surgery (as much as you possibly can) and ran the gamut of moods along the way. The obviously tragic fantasy for me was that my children would lose their mom and have only the flickering memories of the three and five years we had respectively shared. When my husband suggested -- innocently enough -- that I think about "making them a video" I completely unraveled. How on earth could this be happening to me, a Pilates professional when the very credo of Pilates is "It is the will that controls the body"! Oh the irony is too great.

Thanks to an incredibly patient husband, an amazing network of people to help keep my Pilates studio running and the time off from work to gather my thoughts, I landed in a peaceful place of acceptance and from there was actually able to see the blessing in what was occurring. And here it is: for the first time since embarking on my Pilates career, some fifteen years ago, I was able to S-T-O-P. To stop and look around at all I'd managed to accomplish and to drink in all those around me who really mattered most. To make myself and my family a priority; to savor my food; to stop making lists; to walk and breathe at the same time; and to pay attention to what I was feeling.

In order to physically prepare and to quench my thirst for working out, I began a rather meditative version of my Pilates matwork whereby I focused nine-tenths of my energy on breath and precision in a way I wasn't always able to do when racing the clock. And fancy this -- I still poured sweat and felt stronger in new and more connected ways. By the time my day of surgery rolled around I was surrounded by loving family, laughing (in blissful ignorance of what was in store for my body) and proverbially "ready to go."

Thanks to the exceptional talents of Dr. Leonard Girardi, arguably considered to be one of the best in the field for this specific surgery (and who even performed my mom's surgery seven years ago), I made it through. In case you're interested, here is a little clip of my doctor and the surgery. (It's graphic so don't click if you can't stomach it.) A synthetic graft now sits where the aneurism used to be and while I'm not bionic, nor completely safe from future aortic issues, I am on the other side and happy to be looking back on the procedure rather than waiting for it to happen.

And now -- and possibly (with any luck) forever more -- I consider myself to be in the "recovery" phase. Recovering not only from the trauma of the event itself but also from the cyclonic undercurrents of my former life. And I refrain from saying that my life has been changed forever because this remains to be seen. I believe I am the responsible party in charge of making this a life-changing event and not the surgeon. Just as the act of running down a hill can take more concentrated energy (and be exponentially more dangerous) than running up, I am in an active state of deceleration now and am slowly reintroducing myself back to the outside world. I recognize that I've been given the opportunity to recreate my reality, my time management, my self-care and my perception in a way that very few may ever experience in this lifetime. Really it's just been the kick in the ass I needed but actually the choice was there all along. A very Dorothy moment in life.

There are so many tangents and avenues from this experience that I hope to share in future blog entries -- not least of which is my ongoing physical recovery process. However the real tectonic shift is in finding (and balancing) wellness within the path to fitness. I am slicing these two concepts apart with a precision scalpel to explore them with the ultimate intention of eventually melding them back together again so, obviously a journey with no short cut answer right now -- but I'll leave you with the seven essentials that have remained constant in the process so far: Stop, Breathe, Intuit, Cry, Write, Move, Love.

Subscribe to the Lifestyle email.
Life hacks and juicy stories to get you through the week.