Blessing, not a curse

RIO de JANEIRO — We knew something was wrong, of course. For one thing, she would not eat. Our oldest daughter had always been a jubilant eater, not so much in quantity – she never consumed a lot – but in diversity. She always wanted to try something new, even when a familiar favorite was right there. We would go to restaurants, and there would be the chicken fingers and cheese pizzas that entranced kids. Her eye always turned to the most exotic and audacious choice on the menu.

“Do you think the Scorching Spicy Red Lentil Curry would be good?” she would ask.

“There are like five little pictures of fire next to it,” I would say.

“I like spicy food,” she said.

OK. Sometimes, she did like spicy food. Sometimes, steam blew out of her ears. But she kept trying, kept exploring, testing her limits, because that sense of exploration is inside her. Then one day she just stopped eating anything. She kept saying that she wasn’t hungry. She kept making excuses not to eat. She would move around the food on her plate to make it look like she had eaten something.

“She’s a teenager,” we told ourselves.

She was tired a lot. Well, she had never been the most active of kids; one of the inside jokes of the family was how, if a monster came after her, she might “walk briskly.” But this kind of exhaustion was new. She started falling asleep in the middle of the day. She started saying that she was too tired to do just about anything, even things she had loved doing, even reading.

“She just has to eat better,” we told ourselves.

She began screaming about how much she despised swimming. She swam for a community center swim team, and though she was never the fastest one out there – we used to joke that while everyone else was racing, she swam to her own carefree rhythm (which sounded a bit like so the pacing of “The Girl From Ipanema”). Still, swimming made her happy. Sure she would grumble and grouse before practice, but after practice she was smiling and hungry and full of life. Swimming rejuvenated her.

And then – the joy stopped. She said her stomach hurt. She said she couldn’t keep up. She said her stomach hurt. She had to get out of the pool and gather herself. She said her stomach hurt. She would be in tears on the way home as she howled about how much she hated swimming and how angry she was at us for making her do it. She begged us to let her quit every day.

Then, it was around that time that quit caring about a lot of things. Food. Clothes. Us. Her sweetness dissipated. She lost weight she did not have to lose. She announced she wanted to become a vegan and we realized it was mostly an excuse to eliminate foods from her diet. We begged her to eat, and when begging did not work, we fought. We had braced ourselves for the teenage years, but this was more than we knew how to handle. We started to see the bones in her back after she put on her bathing suit, and we started to see her face lose its color and verve, and we could not get her to eat. We were panicked. And, we could tell, she was too.

“I wish your daughter would show more energy in class,” every one of her teachers wrote us in the mid-term report card.

“I think your daughter should see a counselor,” the swim coach told us.

“She’s a teenager,” we told ourselves with less and less conviction.

The power of the Olympics is in its inspiration. There are always issues, controversies, political troubles, positive drug tests, hypocrisies, money scandals and the rest, but the Olympics endure, and the reason is inspiration. The athletes inspire us. Sure, it’s corny, but at their best they can take us with them to these extraordinary places at the height of humanity, to the 100-meter finish line, to the edge of the diving platform, to the mat with hundreds of pounds trembling over our heads.

And, sometimes, the best times, the Olympics can take us even higher. Think of the typical Olympic story, the one you’ve seen a hundred times. This little boy or girl sees the Olympic Games for the first time, in full color and splendor, and it stirs something in them, something so wonderful and important that they can barely breathe. They have found their calling. They have found their essence. They have to go.

Take Kathleen Baker. Maybe you’ve heard of her, maybe you haven’t. She was 11 when she watched the Olympics in Beijing. She sat in the family room in Winston Salem, N.C., and she would not leave the television, even for a second, even for a bathroom break. “Kathleen, it’s OK, it’s a commercial,” her father Norris would say, but she just sat there, frozen, mesmerized, hungry — and it didn’t matter the sport. Gymnastics. Track. Fencing. Her sport, swimming. Didn’t matter. She needed to breathe it all in. This was her future.

And then, how do these stories go? Well, you know of course, the athletes give up everything for the Olympics. Kathleen Baker gave up so much of what so many of us would call “childhood,” you know, the food, the lazy afternoons, the goof-off time with friends, the parties, the vacations, the long and blissful days with nowhere to go and nothing to do. You know: The normal stuff. But what’s easy to miss is that Kathleen Baker did not want to be normal. “The Olympics,” she says, “mean everything to me.”

Baker swam constantly… and joyfully. That joyful part was what separated her. When she was 14, her family moved 79 miles south, to Charlotte, where David Marsh – “Miracle Marsh,” as 1992 Olympic champion Mel Stewart, one of Marsh’s many disciples, calls him – coached the renowned SwimMac. Baker would show up hours before her own practice every day just to watch SwimMac’s famed Elite Team (with Olympic legend Ryan Lochte, among others). She didn’t just watch. She hoped that maybe they would let her swim with them.

“She was always ready – and I’m talking every day – just in case we said, ‘OK, get your suit on and jump in,’” Marsh says. “I had never seen that.”

“With Kathleen, we would use NOT going to practice as discipline,” her mother Kimberly says. “We would literally say, ‘If you don’t finish this assignment or if you don’t get this thing done, you’re not going to practice,’ and it worked. With Kathleen, the perfect day is two practices and a third thing like weightlifting.”

This was her most powerful weapon – she is not one of those athletic swimming marvels. As Marsh says, “she is not 6-foot-3, she does not have a stroke that is beyond what other swimmers can do technically.” Her gift is that unceasing eagerness. Every swimmer has days when they show up at the pool feeling sluggish or cranky or generally uninterested — but not Kathleen. Every day was a thrilling chance to get just a little closer to the Olympics. She swims all four strokes with enthusiasm and verve; practice always ends too soon for her. From the beginning, she never doubted her destiny.

And then, one day – ironically, the very day she set her first age group national record – she started feeling these horrible stomach pains. She started carrying around a low-grade fever. She was diagnosed with mono, but it did not go away. She began to lose weight even though she ate voraciously. Kimberly, in something of a panic, made her eat a cheeseburger every day, just to fight off the weight loss. This led Kathleen to hate cheeseburgers.

“I would look at her,” Kimberly says, “and she was white as a sheet. And I would think, ‘this is not right!’ A mother just knows; something was wrong.”

Doctors. Of course they went to doctors. Blood tests. Theories. Prescriptions. There were brief bursts of hope, long stretches of panic, and, most of all, confusion.

Then one day, she saw an email that the doctor sent to her father: “Kathleen has Crohn’s Disease.”

“That,” Kathleen says, “was the worst day of my life. I was heartbroken.”

* * *

How do you explain Crohn’s? The technical way, I suppose, is to say that it’s a chronic disease (meaning it never goes away) that affects the intestines — particularly the colon. To be a bit less technical, all of us have harmless bacteria in our gastrointestinal tract; these help digestion. Our immune systems naturally know to leave those bacteria alone. But in a Crohn’s patient, the immune system attacks the harmless bacteria leaving behind tiny ulcers and wreckage. The Crohn’s Institute says there are about 700,000 people in America with Crohn’s, though I suspect for various reasons that it’s an under-diagnosed disease.

Anyway, none of this explains Crohn’s. It is a cruel and devious disease that alters the body in a hundred ways, never the same way twice. There are, of course, the terrible stomach pains — the flare-ups, as you learn to call them. These come and go in an irregular rhythm; they can disappear for months, even years, and then attack with extreme force. But the flare-ups are only one weapon. Crohn’s will obstruct appetite so that the very idea of food is nauseating. Crohn’s will sap you of your strength. It will steal your sleep. It will hollow out your zest for life. Crohn’s is nasty and unforgiving.

And, perhaps most horribly, Crohn’s feeds off of tension, stress, pressure — it hits students hardest at final exam time, hits workers hardest when deadlines approach, hits everyone at that exact moment when they desperately need to feel confident and ready.

All of which to say: Crohn’s is a rotten disease for someone whose one overriding goal in life is to swim at the Olympics, the most pressure-packed dream imaginable.

Then again, it is also a rotten disease for a 14-year-old girl who loves Hamilton, DC Comics, 1990s music, reading, the television show “Friends,” actual friends, fashion, the theater, Smosh, and who is deciding whether she wants to be a forensic anthropologist or a pro bono lawyer who helps change the world.

It’s really just a rotten disease, period.

* * *

The most inspirational stories don’t start out that way. They start out with anger and doubt and confusion. Before Crohn’s, Kathleen Baker had simply worn down every challenge in her young life with energy and ebullience. She would work harder, practice longer, try more.

But Crohn’s took that away from her. At first, she rebelled against the disease by pushing herself to the brink. “We wanted to adjust her training,” Marsh says, “and Kathleen wouldn’t cooperate. She’s one of the most driven athletes I’ve ever coached. She didn’t accept it, even a little bit, and she would wear herself down. It wasn’t working.”

Another thing about Crohn’s: The treatments and diet are different for everyone. There are a few basics. Dairy is bad. Fiber is bad: raw fruits and vegetables and nuts, the very thing we parents push hardest, can be devastating for a Crohn’s patient. Rest is needed. Medication varies from pills to shots to monthly infusions. Doctors know a lot more than in years past, but mysteries remain. It took a long time to figure out a treatment plan that worked for Baker.

And once they did — the pills didn’t take for her so she needs regular shots — Marsh and Kathleen’s family had a heart-to-heart talk with her.

“It was so hard for me,” she says. “I always believed I would get to the Olympics because I would work harder than anyone else. And then, I can’t do that. I was scared. I really thought it was over, my whole dream was over.”

“I’d say at this point, faith moved into this,” Marsh says. “We talked very frankly about it — ‘Kathleen, this is your situation. Why are you in this situation? Only God knows. The only thing we know is that there’s a plan. You have an incredible level of motivation and you’ve always been willing to do whatever it takes. Well, this will take something else.’”

They designed a unique practice plan that cut against everything Baker had come to believe. She would practice once a day, not twice. She would go home on weekends and be with her family and see friends — all those normal things. After treatments, she took more time away from the pool. Marsh would watch her very closely to see if Crohn’s was crushing her, and on those days he would tell her to stop.

“I can’t even begin to tell you how hard this is on Kathleen,” Kimberly says. “She had been raised to believe that hard work is what gets you places in life. And now we were telling her that hard work doesn’t work for her. And it doesn’t – in her case, it’s the opposite. She has to work smarter. She has worked on her technique, on perfecting her turn, on things like that.”

“Did I believe it would work?” Kathleen asks. “I didn’t know. That was the hardest part.”

* * *

The first thing we wanted to know after the diagnosis — the only thing we wanted to know — was if Crohn’s Disease would keep our daughter from achieving her biggest dreams. We asked the doctor a million questions, and we spent a million hours on the Internet looking up everything we could, and we sought out people who knew people who had Crohn’s, and through it all it we just wanted to the answer to one thing: Will our daughter get to live the biggest life she can pull off?

Of course, no one had that answer for us, because no one can answer that for us, because Crohn’s doesn’t work that way. There were medical assurances. There were encouraging words from people who have lived with Crohn’s. And then there were moments, horrible moments, like the night before I took my daughter to see “Hamilton.” We had been planning it for months; “Hamilton” is her favorite thing in the world.

But the night before we went, she was in tears, in pain, in that terrible place that Crohn’s can take someone. “I’m just so sad,” she told me that night as I held her and reassured her. “Sometimes, I don’t know if I can ever be happy again.”

The next day, though, the medicine kicked in, and the fog melted away, and “Hamilton” was transcendent, and it was probably the happiest day of her life. These are the lows. These are the highs.

Two weeks before Kathleen Baker tried to fulfill her lifelong dream and make the Olympic team, Marsh says, she didn’t look good in the water. She’d had a somewhat disappointing NCAA Championships while swimming for the University of California, Berkeley (second in the 200-yard individual medley). She was worn out. Even after she returned to Marsh, she continued to look sluggish.

“You know,” he says, “as someone who cares so much about Kathleen as a human being, in the back of my mind, I did wonder: ‘Is this what she should be doing? She has this illness that doesn’t respond well to stress, and here she is walking into the most stressful situations. Is this what she should be doing?’”

“But, we had faith,” Marsh says.

“We had faith,” Baker says too.

Kathleen Baker at the 2016 U.S. Olympic Trials Credit: USA TODAY Sports/ Erich Schlegel
And the last two weeks before the Trials, it all came together. Baker began looking like herself in the pool. Swimmers are always trying to get the perfect taper — which is to say trying to schedule training and rest so that the swimmer is in peak condition for the event. At the Olympic Trials in Omaha, Kathleen Baker had the perfect taper. They scrapped the plan for her to swim the 200-meter backstroke, her second-best event: Everything would depend on her 100m backstroke. She swam fast in preliminaries, building her confidence. She advanced to the semifinals.

And then in the final, she faced off against a preposterously loaded field — a field that included the last two Olympic gold medalists in the event, Missy Franklin and Natalie Coughlin. She had never beaten Franklin. But on this night, in her moment, she swam the fastest race of her life, 59.29 seconds, to finish second to Olivia Smoliga. That put her on the U.S. Olympic team.

“Think about this,” Marsh says. “In the biggest race of her life, she swam her lifetime best time — and anything less than her best and she would not have made the team. How is that for a story?”

“Any parent would love to see that much joy,” Kimberly says.

“The feeling?” Kathleen asks. “Yeah, everybody asks me that. I still don’t have any words for it.”

* * *

The power of the Olympics is in its inspiration. When Kathleen Baker found out that she had Crohn’s disease, she – like all of us – rushed to the Internet to learn as much as she could about the disease. What she found, mostly, were devastating stories, despairing stories, hopeless stories. What she found mostly were limits and boundaries and the things that couldn’t be done.

“I kept telling her,” Kimberly says, “I don’t think that’s YOUR story.”

No, Kathleen Baker is not a medal favorite in Rio; she will need to swim well just to make the final. And if she did not have Crohn’s, well, Marsh says she would be one of the best all-around swimmers in the country.

Then, if Kathleen Baker didn’t have Crohn’s, she wouldn’t have heard from a 10-year-old boy who has lost 15 pounds and wonders how he can live with this thing.

She wouldn’t have heard from family after family that have stories that sound so eerily similar to her own.

And she wouldn’t be the guiding light to our own family, one that searches every day for hope, for optimism, for the confidence that our 14-year-old daughter with Crohn’s can do anything.

“Tell her I’ve been there,” Kathleen says. We do tell our daughter, and she smiles. The Crohn’s is in remission. We know it will be back. We brace for it. And though our daughter does not want to go to the Olympics, does not want to swim faster than the Bossa Nova rhythm of “Girl from Ipanema” that plays in her mind, well, that doesn’t really matter. Kathleen Baker made her sky just a tiny bit bigger.

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