Healing The Heart

I’ve been trying to write this entry for the past 2 weeks, starting and stopping, knowing that I couldn’t give it the respect and admiration it deserves. Thinking I didn’t have the right to write it. I’d just about scrapped it, but in the bookstore yesterday, National Geographic’s February issue – featuring an in-depth exploration of the human heart, heart disease, and all that medical science is doing to mend our sick and broken hearts – sent me the message. Leslie sent me the message, and I have to tell you about her.

I met Leslie in 2003 when I worked as a community outreach and volunteer manager for Donor Awareness Council. I was in the conference room with my colleagues when this stunning, spirited woman threw open the door and announced with tears in her eyes and an ear-to-ear grin, “I just ran for five minutes!” The room erupted in celebration.

After exchanging hugs, they introduced me to Leslie – 22 years old, beautiful in and out, and an incredible story. Born with a congenital heart defect so severe that doctors gave up and sent her home, Leslie was not supposed to be alive. She defied science, surviving her first year and surgeries at 15 months to “band” the broken arteries and repair the holes in her heart. At 3, she received a transplanted pig’s valve. At 9, she almost had her leg amputated when a last-minute, experimental sapphenous vein transplant saved it. A pacemaker at 17. Barely able to walk without stopping to catch her breath between classes. 4 heart attacks at age 22. 4 false alarms that a donor heart was available. Then, finally, the life-saving heart transplant that allowed her, for the first time in her life, to run on a treadmill for 5 minutes.

Leslie, who endured 128 hospitalizations before receiving her transplant, said, “They started my transplant at 3:00 a.m. on Friday, March 1, 2001. By 7:45 a.m., both ventricles had shut down and the medical community gave me a two percent chance of survival. They told my family that if I survived, my brain would be so damaged, I’d never be able to function on my own again. Nine days later when I woke up, they found that I’d suffered a stroke that took my alphabet, numbers and every-day tasks away.”

I couldn’t believe it. She seemed so, well, normal. Superhuman, actually. And there I was, complaining about a bad knee. This girl had to re-learn potty training at 22!

Leslie was enchanting, and used her in-depth knowledge about her experience, her gift for storytelling, and her ability to captivate audiences to spread the word about organ and tissue donation. She was an advocate for patients and a supportive friend to all who needed her. She carried their hearts when they couldn’t, and refused to let anyone give up. She never complained about her condition, viewing it instead as a vehicle to help others and save lives. She loved especially her work with teens and young kids, and helped other transplant recipients and donor families learn to tell their personal stories to affect change. In 2004, Leslie earned our volunteer of the year award, and continued to take on high schools and churches and any captive audience that would listen. I loved working with her, and thought of her often, long after I left the organization.

I kept tabs on Leslie’s latest achievements through my friends back at DAC. A little over a year ago, they told me that she had to move to California to be close to Stanford Medical Center. She was rejecting the heart, and would need to go back on the transplant waiting list for a new one. Okay, I thought, just another setback for supergirl. She’d bounce back, and have an even more amazing story to tell, along with a hundred more doctor, nurse, and patient friends from her stay at the hospital. She’d get her heart, recover, and return home to Colorado, right back on the public speaking circuit.

But her return to Colorado was not the return everyone had hoped for. On February 12th, 2007, Leslie died in the hospital in her mother’s arms. Though I didn’t know her well, I’d wanted to write about her, to tell you about this amazing woman and all that she achieved in her short time. To encourage you to become an organ and tissue donor. To keep spreading her message. To honor her, in some small way.

Something held me back. I didn’t know her well, so I felt like I didn’t have the right. Until yesterday, the day after her memorial service, when the broken-hearted National Geographic cover jumped out at me in the bookstore.

Funerals are funny, aren’t they? You can never encapsulate the whole of someone’s entire life in a 30-minute presentation. You’d have to invite every person that ever knew or loved the departed to come up and tell a story. You’d have to read from her diary. Look at all of her photos. Listen to the story of her birth and every childhood milestone from the lips of her mother. Display her clothing and her favorite toys. Read from her favorite books. Talk about her favorite places to visit. Cook her favorite meals. Smell her perfume and shampoo. Pet her dog. And you still wouldn’t be close. I guess that’s why at the end of a life, a whole incredible life, we seek comfort in clichés. Everyone who’s ever died “lived life to the fullest” and “is an angel watching over us” and “was the brightest star in our sky,” including Leslie. (To further complicate the matter, she’s also “classic, blue-eyed, blond-haired beauty” with an “infectious laugh.”)

I intend no disrespect, as those of you who know my sense of humor can attest. There are reasons we turn to clichés to remember the good in people. No one wants to be at little Bobby’s funeral when Uncle Joe starts talking about how mediocre Bobby was, and how he lived life only to about quarter-tank, and flickered on and off and kind of paled in comparison to the other family stars in the sky. But Leslie? No, she really was the brightest star. I mean it. Like I said, I didn’t know her well, but she was one of those rare people that you couldn’t help but fall in love with. And not the kind of love where you wake up in bed the next morning wanting to chew your own arm off to get away. See, the thing about Leslie was that you didn’t necessarily have to be in her presence to be with her. Just talking with her one time made you a better person; like she left behind this little magic fairy dust that got everyone high on life and fuzzy happy things.

At the service, one of her relatives told us that Leslie always said, “Throw pebbles, because you never know how far the ripples will go.” So many times over the past few years, when friends or family members were sick or struggling with some seemingly insurmountable challenge, I shamelessly told bits and pieces of Leslie’s story, hoping to drop some of her pebbles and infuse a little of that magic dust. Alex has done the same for me, whenever I cried over something as trivial as a bad day at work. “Think about Leslie,” he’d say.

This morning I was especially sleepy when my alarm went off. I reset it for an hour later, figuring I could catch a few more Zs and make up the time by skipping breakfast and doing a military shower. But the sun fell through the windows just so, and everything was silent, save for this little bird outside, singing away like he’d just defrosted from the holiday blizzard and couldn’t wait to get some sun on his wings. Instead of falling asleep, I lie there with my eyes open, watching the sun change shapes on the wall, feeling Alex’s warm feet on mine, letting the bird sing me a morning melody until my hour was up.

Appreciate something like that every day. Because really, what else is there in this life?

One night, before her transplant, Leslie sat in her hospital bed as her family ate Chinese takeout. She told me that she liked to swish the egg drop soup around in her mouth to taste it, but she wasn’t able to swallow it – she was too sick. She also liked to open her fortune cookie, hoping to read a little good news on the tiny paper strip. On this night, her fortune said – and I can still here her voice telling this story, because it gave me chills –

“Hearts beat with life, hearts beat with love. You will receive a gift from above.”

That night, Leslie got her heart.

Leslie, you are a gift from above, and we will never forget you.

“The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn, like fabulous yellow roman candles exploding like spiders across the stars and in the middle you see the blue centerlight pop and everybody goes ‘Awww!’ – Jack Kerouac, On The Road