A former employee of Karyn's, Tedra Bonner, runs a My Gym in Minnesota. A local paper there ran this article about one of her employees who has CF. I read this yesterday and felt inspired.
At home last night, Jake told Julie that when he told his friends he had to get x-rays tomorrow, they told him he has a "bad body". Even writing that gets me choked up. I'm sure they meant no harm. I hope they were just being kids and not making fun of him. Jake is already resisting some of his treatments because (I think) he's starting to feel different. I hope I can be a strong parent like the ones in this article and tell him the right things. I worry. I worry a lot. At some point he'll be on his own. At some point he'll make his own decisions. We know another family in Santa Clarita who have a daughter with CF and, in one of her parent's own words "she doesn't take care of herself". That must be agonizing. What do you do? May I once again reiterate that I fucking hate cystic fibrosis?
Here's the article.
Jake Erling wasn't supposed to live past age 13 after being diagnosed with cystic fibrosis. Thanks largely to tae kwon do, he's got plenty of fight in him.
By Pam Schmid, Star Tribune
Nine boys and girls in bare feet and crisp, white karate uniforms line up between the slide and the parallel bars at My Gym in Eden Prairie, waiting for their chance to practice the round kick.
Jake Erling, their black-belted karate teacher, known as "Mr. Jake," brandishes a red pad as a young sandy-haired boy raises his knee, turns and lands a blow with his foot. "KEEE-AAH!" the boy yells.
"Nice, Ben," Erling says. "That was a good, hard kick. You're awesome!"
Ben scampers to the back of the line, beaming.
When Erling was Ben's age, compliments like those stuck with him forever. Because he has cystic fibrosis, a life-threatening genetic disease, people said he wouldn't live long. But simple words of praise in karate class made him believe he could be whatever he wanted to be.
"Come on, Will. Blast it. Nice kick, Will!"
Erling, 30, is so fit that he can spar with other black-belt fighters for two hours, and he often does. It seems almost inconceivable that at age 5, he wasn't expected to live past 13.
Although medical advances have contributed to his health, Erling says he owes his life to tae kwon do. He credits the discipline with keeping his lungs and body strong, and with giving him mental and spiritual fortitude, even after he developed insulin-dependent diabetes and chronic pancreatitis in his teens. Most recently, he has developed a cataract in his right eye.
"The way of martial arts is believing in yourself," he said. "It's all confidence. That determination and discipline is really what makes you. You can be as strong as you want physically, but if your mentals are weak, there's no chance for you."
Susan Martinez remembers the day she learned her 5-year-old son, Jake, had cystic fibrosis (CF).
"It was devastating," she said, "and doubly so because five weeks before that, we had a stillborn son. This could not be happening. I had my first moment of, 'Oh, my God. I can't do this.' Then I thought, 'To hell with it. I know we can do this.' "
Because of a defective gene, children with CF develop thick, sticky mucus and digestive juices that can plug up tubes and passageways, especially in the lungs and pancreas. Respiratory infections are common. Fifty years ago, children with CF usually didn't survive beyond elementary school. By the mid-'80s, the life expectancy was still only 15.
Erling remembers that doctors wanted to treat him as if he were fragile. They told his parents, Martinez and Rich Erling, to set up their house like a hospital and treat him like a patient. But Martinez was confused when they also said that the way Jake felt about himself would determine how long he lived.
"I said, 'He can't do both,' " Martinez recalled.
Instead of isolating Jake, his parents told him he would live like a normal kid. They kept him away from sick people, but enrolled him in school and put him in charge of his pills, dozens a day, to encourage him to take responsibility for his health.
When kids at school would tell him they heard he wouldn't live past 7, or 11, his parents would tell him he would live as long as he wanted to.
Soon after Jake's diagnosis, his mother enrolled him in a tae kwon do class at Har-Mar Mall in Roseville. He was one of the few children in the class and was treated no differently than anybody else.
Tae kwon do taught Erling discipline, determination, dedication. He could feel his lungs and body growing stronger. He still took the medication and made frequent hospital visits to clean out his lungs, but he could forget all that when he practiced his kicks and punches.
At age 14, Erling spent 17 days in the hospital with bronchitis, a potentially deadly ailment for CF kids. A month later, he tested for and received his black belt, with his family and doctor looking on.
"He was the youngest and smallest person performing," said Dr. Stephen Kurachek, a pediatric pulmonary specialist at Children's Hospital in Minneapolis who has treated Erling since he was 12. "I'll tell you, it still brings chills to my spine."
Soon after receiving his black belt, Erling's real challenges began. He learned that he had CF-related diabetes and made constant trips to the hospital with elevated blood-sugar levels. Then chronic pancreatitis, which causes painful bouts of pancreas inflammation, set in. The combination knocked him to his knees, forcing him out of the martial arts for nearly five years.
During one of his hospital stays in his late teens, Erling took a hard look at his life. He remembered how strong and confident he had been and wanted that back. The day he was discharged, he returned to USA Karate in Brooklyn Park, where he had trained for his black belt. He has gone there nearly every Friday night since, sparring with other black belts for the better part of two hours.
Erling's CF can sometimes affect his breathing, but diabetes slows him even more. If he feels his blood sugar drop during the middle of a fight, he'll bow out and find something to eat or drink.
"It's frustrating, because I love it so much," he said. "I'm upset, sitting on the sidelines, but there's always next week."
Opponents have been shocked when they learn his story; some are reluctant to continue fighting him. "Then I just fight them harder," Erling said. "I say, 'Don't baby me.' "
Today, the median life expectancy for people with CF is 37. Erling is blessed with a milder form of the disease, according to Kurachek, who figures the aerobic component of tae kwon do is a primary reason why Erling doesn't have to undergo the daily grind of bronchial drainage.
While most cystics must undergo the procedure one to four times daily, "for Jake, we have not thrust it upon him," Kurachek said. "We know how hard he works."
Teaching is Erling's way of giving back. He began leading classes at My Gym, where most of his students have white or yellow belts, about a year ago. Erling also teaches karate to adults in St. Paul, along with working full-time as a clothing store stock manager in Brooklyn Park. Wedding bells are in his future this summer.
The kids at My Gym seem unintimidated by his appearance -- beard, shaved head, earrings, tattoos up and down his arms. He figures that a kid can tell a good soul when they see one.
"He's such a good role model," said Tedra Bonner, co-owner of the gym. "He's very strict and stern, there's no wiggle room, yet he has fun at the same time. I've seen some big changes in some of the kids. They're getting more confident."
Said Erling: "We have kids with physical challenges here. Some have autism. It might slow you down, but it can't stop you. I'm living proof."