Saturday, December 31, 2016

2017: A Year of Gratitude

Let's face it. 2016 was a difficult year for many people. To put it mildly, I am less than excited about the incoming presidential administration, and I have seen this year's election divide friends and family like never before. (But this post is not about politics.) This year also saw the passing of far too many people—fellow CHD warriors who left us too soon, music and entertainment icons, and some of our closest family members and friends.

On stage at the Lincoln Center
April 2016
And even though I, too, am ready to put 2016 in the history books, I would be remiss to not remember and celebrate the year's many highlights. For me, the past twelve months have actually been filled with some pretty amazing moments and experiences:
  • In January, I celebrated the 2-year anniversary of my second open heart surgery.
  • In April, I performed Carmina Burana on stage at the Lincoln Center in New York.
  • In May, I performed Carmina Burana on stage at the Kennedy Center in Washington, DC.
  • In July, I joined the Camp Odayin family as a residential camp counselor.
  • In August and September, I took a career break and traveled to Europe to hike the Camino de Santiago—800 km across France and Spain over 31 days.
  • In October, I went on my very first cruise to the Bahamas with a good friend.

Santiago de Compostela Cathedral
October 2016
We live in a world where it's so easy to focus on—and get consumed by—the negative. Far too often, the mainstream media, our social media feeds, and even our daily interactions with others are overrun with negative news. And I don't pretend to be above it. I've certainly fallen into this trap from time to time.

But as 2016 comes to a close and I look forward to the new year, I am making a very conscious effort to focus more on the good things—to make 2017 truly a year of gratitude. Encouraged by Becky Howell, holistic success coach and one of my best friends since college, and inspired by the 365 Grateful project, my intention is to take some time each day to focus on the positives and to celebrate and be grateful for all the good things in my life. I do not expect 2017 to be all flowers and trees, nor do I intend to be oblivious to any tough realities that may come my way. But my goal, a New Year's resolution if you will, is to be more intentionally focused on the good, on the positive aspects of life.

Anyone in the CHD community—whether patient, family member, or friend—knows that life with congenital heart disease is not easy. But one thing I have learned from, and gotten to love about, so many of my friends in this community is that the time to live life is NOW. We are all on borrowed time, whether or not you have a chronic health condition. None of us knows when our time will be up.

I used to be afraid of death. And while I wouldn't say I'm looking forward to it (In fact, I hope to NOT have it visit me any time in the near future.), I believe that my CHD has actually allowed me to accept and (to a certain degree) embrace my own mortality. I believe that it has given me a reminder—perhaps disguised as a kick in the pants or an unexpected cycling accident—to be happy right now. I believe that it has given me the motivation to take a leap of faith earlier this year, quit my job, and hike across a foreign country—simply because I wanted to and I knew that I could. And I believe that it has given me a genuine appreciation for life—for the here and now—that many people unfortunately feel unable to attain.

So wherever you find yourself on life's journey at this moment and regardless of where you want to go, I hope that you, too, will take the opportunity to experience and embrace the positive in all that comes your way. Here's wishing you peace, health, and happiness in 2017 and beyond!

Thursday, December 15, 2016

The Importance of Allies

I admit it. I am stubbornly independent. I like figuring things out on my own, and I take pride in being self-sufficient. I enjoy helping and supporting others, but I am terrible at asking for help.

Of course the reality is that no one—with very few exceptions—is completely self-sufficient. In fact, our culture almost requires interconnectivity. Most of us are not growing our own food, working entirely for ourselves, and building and maintaining our homes in isolation. In most cases, our networks are necessary for our very survival.

In this same way, living with congenital heart disease (CHD) is not—and should not be—done in isolation. Whether stubbornly independent or not, we must rely on others from time to time, most often when we are feeling the most vulnerable. Five years ago, following my cycling accident that fortunately, but unexpectedly, got me back into adult congenital heart disease (ACHD) care after about a decade lapse, I had a new rule book by which to live.

I recognize and am grateful that I am one of the lucky ones. I've had "only" two open heart surgeries (so far), and I have basically no limitations on my physical activity. But I would not be where I am today without an amazing network of allies within the CHD community that continues to grow—from my fellow Heart to Heart Ambassadors to passionate advocates, family members, and friends.

As I was facing my second open heart surgery in early 2014, I would often turn to my CHD network of allies for support, comfort, and guidance, whether it was my medical team to get answers to the countless questions I threw their way, or the phone, text, and online chat conversations with friends and fellow Ambassadors who had already gone through surgeries as adults. Hearing from others who had lived through what I was about to go through helped immensely. And while I certainly did not look forward to my trip to the operating room, it was only become of my support network that I could face that fear with the courage and confidence that I did.

Just as each person's CHD journey is unique, so too are the individual networks of allies that people establish. Some have a strong network of family and friends that they lean on. Some benefit from connecting with another CHD patient or family member, whether through the Adult Congenital Heart Association's Heart to Heart Ambassador program or another local resource. But the important thing for everyone to know is that they are not alone. Life with a CHD may not be easy, but having allies in place allows you to have the necessary support system to lean on for medical, social, emotional, and, yes, sometimes even financial support.

I have had the privilege of sharing my own CHD story many times both through a blog and by speaking at several events, from various Congenital Heart Walks to the 2014 National Conference in Chicago. The feedback I’ve received has been incredible. I was once told by the parents of a young child with CHD that my story gives them hope that their baby will be able to grow up and live a full life as an adult. In that moment—and even if only for that one moment—I became a part of that family's network of allies. But what they probably did not realize is that they too became part of my own ally network. And even if I never see them again, their feedback motivates me to stay involved and to continue giving back to the CHD community.

If you are reading this blog, you already have a connection (even if it's just preliminary at this moment) to a network of allies. The CHD journey is too great to go it alone. So I hope that you will take the opportunity, as I did, to connect with some amazing people and resources and to become a stronger and more confident person in the process. Here's to your health and living your life to the fullest!

"The power of community to create health is far greater than any physician, clinic or hospital."
–Mark Hyman, MD
physician, author, and Director of the Cleveland Clinic Center for Functional Medicine