A March Madness Mindset Takes On Rare Diseases

Please look closely at the face of Duke’s #23. That photo was taken in March of 1995, during the first quadruple overtime game in an NCAA women’s basketball tournament. Keep that image of pure determination in your mind when you listen to her story and her mission in life. I think you’ll find her mindset contagious.

Six-foot-2-inch Carey Kauffman has taken what she learned from her life in basketball and is applying it, personally and professionally, to the most difficult health challenges that any child or parent can face.

I’ll tell you – nothing like having two out of your four children have ... distinct rare diseases to make you realize, “Huh, maybe someone’s telling me something. Maybe this is where I’m supposed to be.”

Kauffman was basically born into basketball. Her father was three-time NBA All-Star center Bob Kauffman.

When Carey was in third grade, she wanted to join a basketball league, so her father took her to sign up. They were told there was no girls’ division, and that she couldn’t play with the boys. A deal was made. If Bob Kauffman coached, his daughter, Carey, could play.

In those days, they didn’t lower the baskets for children. So Bob Kauffman told Carey and her elementary school teammates: “Don’t worry about getting it all the way to the rim if you can’t. I’d rather have you have good form and practice good habits. ... Wins will come if you can build a strong foundation.”

In Carey’s college days, a woman of her height, 6’2”, would nearly always play center. Carey was an exception. During her four years as a starter on the Duke Blue Devils, she chose to play guard-forward: “I didn’t want to be inside waiting for the ball. I wanted to have the ball and decide what to do with it. So, that was my personality.”

Eight years ago, Carey Kauffman gave birth to a 9-pound 4-ounce boy named Conor. Three days later, he passed away, the victim of a rare lung disease called Primary Ciliary Dyskinesia ― PCD. The doctors “had never seen such a strong, healthy boy just go so fast.” Carey remembers what she thought during those three days, when doctors first suspected her son had PCD:

I honestly went back to my being raised as an athlete and said, “I believe ... I can leverage my own experience. I can’t cure it. I’m not a researcher. I’m not a clinician. I can’t treat it. But I can darn well make sure that my son gets the most out of what he has.” That has stuck with me ever since that day, eight years ago.

Carey and her husband, Todd McGuire, now have three children. Two are healthy. But their 6-year-old son, Elijah, is coping with a different rare disease from Conor’s, called Beckwith-Wiedemann Syndrome, an overgrowth disorder that, among other things, increases the risk of childhood cancer.

When considered together, rare diseases are not so rare. According to the National Organization for Rare Disorders, there are seven thousand of them, afflicting one in 10 Americans. As Kauffman points out, “we learn a ton about more pervasive diseases by understanding what’s going on in a rare disease.”

Kauffman’s mission, which she pursues through her wellness coaching business WellSelf 360, began to take shape in that hospital room with Conor: to leverage her experience as an athlete to help people with rare and chronic illnesses get the most out of what they have — which may be more than they currently imagine.

In her own family, that means guiding her son Elijah, in an age-appropriate way, “to take the lead role in his own care.” That mindset can help build resilience, in her son and her clients.

A lot of times, we tend to be very protective of the child that has the health issue, but what happens is, as much as we’re trying to help that child, a lot of times, we’re creating a situation where they need others for them to do what they need to do. We’re not allowing them to build their own resilience. We’re not allowing them to fail. We’re so concerned about them failing that we don’t allow them to build their own self-confidence, and you can only learn strength and humor through learning how to deal with struggle.

As for helping entire caregiving circles find their inner strength, Kauffman returns to basketball.

Even after you’ve missed four or five shots, you’ve just got to take another shot. If it’s your shot, you take it. If your shot’s not going in ... you can always rebound. You can always get back on defense. You can always play strong.

For anyone in those circles of care — and for those out there who, for any reason, feel depleted — like they are heading into a fourth overtime — I highly recommend listening to Carey Kauffman on this episode of Wavemaker Conversations: A Podcast for the Insanely Curious. The compelling stories she shares may help you play strong.

Michael Schulder is the host of Wavemaker Conversations: A Podcast for the Insanely Curious. You may subscribe, for free, on iTunes here, and sample his other work on his web site here, and follow him on Twitter here.