Published: Monday, February 6, 2012 at 5:33 p.m.
PETALUMA – Jacalyn Murphy’s a teenager, just 16, and she would like to do what most teenagers do at 6 in the morning: Head buried in the pillow, still sleeping, dreaming, probably, of more sleep.
She would like to roll out of bed much later, dress, eat and get ready for high school with half-opened eyes, a shuffling gait and minimal conversation. But Jacalyn can’t sleep in.
Jacalyn wants to live and she wants to play basketball for St. Vincent.
Yes, cystic fibrosis is damn inconvenient.
At 6 o’clock every morning, Jacalyn trudges downstairs, finds the sofa and begins her hour-long routine. She grabs an inhaler and self-administers Albuterol, a drug that increases air flow into the lungs. Another liquid medication, pulmozyme, is attached to a nebulizer and she then sprays that into her lungs.
Jacalyn reaches for and plugs in what she calls “The Vest.” No one has half-opened eyes wearing The Vest. Jacalyn turns on The Vest and air is pumped into multiple compartments. The Vest pounds against her torso. Sounds like a broom hitting a hanging rug in quick-step. For 20 minutes Jacalyn wears The Vest. The thumping action helps loosen the thick, sticky mucus in her lungs.
Before she eats breakfast, and every time during the day before she consumes food, Jacalyn swallows an enzyme pill to help her body absorb the nutrients in whatever she eats, even if it’s just a granola bar.
Jacalyn was born with cystic fibrosis (CF), an inherited, life-threatening disorder that causes lung damage and nutritional deficiencies. Diagnosed at 2 when a persistent cough didn’t clear after antibiotics, Jacalyn can never remember a day without her routine. Oh, she corrected, there might have been a day or two in the last 14 years she didn’t undergo her treatment.
“When that happened,” she said, “I felt sluggish, tired and coughed a lot.”
What would happen if she went a week without treatment?
Jacalyn just shook her head, with a look of bewilderment, as if she was asked what hot asphalt would taste like. That was, by the way, the strongest reaction she had in two hours she spent Thursday discussing her disease. She possesses an equanimity about her, almost like a Zen stillness.
“An old soul,” her dad, Mike, said.
Jacalyn spoke of CF without so much as a shrug, let alone a gripe.
It’s a life-threatening disease, she knows this, but has she ever asked herself, Why Me?
Does she get angry?
No. Even a little bit? Nope. Short temper? Depressed? These are all common and understandable reactions. Nope, she said. She has no use for those emotions.
“Just seems part of my life,” said Jacalyn, who averages 11.2 points and seven rebounds a game for St. Vincent.
Like the color of her hair. OK, sure, cystic fibrosis is a more-than-a-shrug disease. It can be a rain cloud every day if you let it. And it wasn’t as if Jacalyn doesn’t know the severity of it. Mike didn’t sugarcoat or deny the gravity of the disease. After all, that would have been impossible.
Little Jacalyn, you see, would look at her father’s family pictures and Mike would have to explain what his daughter saw. Mike had three brothers and a sister but only one them, a brother Tom (42), was pictured as an adult. The others were Christopher, age 9, Joseph, age 16 and Ann, age 19. All four died from CF.
“It would have been tough to side-step,” Mike said.
And it would be tough to dumb-down the disease as well. According to the Mayo Clinic website, CF occurs most often in white people of northern European ancestry, in one out of 3,000 live births. CF affects the cells that interact with mucus, sweat and digestive juices. In CF, a defective gene causes the mucus — normally thin and slippery — to become thick and sticky, clogging up tubes, ducts and passageways. Infections develop, and after many reoccurrences, scars form and damage the lungs. Lung function worsens and eventually the disease can become life-threatening.
“When my family experienced it,” Mike said, “the life expectancy from CF was 9.”
Now, according to the Mayo Clinic website, people with CF can live into their 50s, even longer.
Jacalyn is going for the “even longer” part.
“We take Jacalyn to UCSF four times a year,” Joanne, her mother, said, “and the doctors love seeing her because it isn’t often they get to see someone as healthy as Jacalyn who has the disease.”
Both parents need to have the defective gene for a child to have CF. It’s percentage chance, not a sure thing, and the Murphy’s two other children do not have CF. But Jacalyn does.
“Murphy’s Law you might say,” Mike said.
That said, Jacalyn did catch a break. Mike, a San Francisco firefighter, has a “more severe” defective gene than Joanne, an instructional aide for kindergartners at St. Vincent’s. The offspring inherits the “less severe” defective gene from the mother. So Jacalyn can play basketball without fatiguing, without an inhaler, without any respiratory aids. To look at her play, the disease is not apparent. She is a starter, a major contributor.
“I can do everything my friends do,” she said, “but I have to be more responsible about my health.”
To that end, Jacalyn cannot expose herself to smoke, alcohol or drugs, which would weaken her immune system.
“Exercise is necessary because it helps clear the lungs,” she said. “So I can play the game I love and stay healthy at the same time. It’s a win-win all the way around.”
She plays soccer from August to November and basketball the other months. Basketball is at her core. Basketball, the game she has played since she was 5. Basketball, the game that helped form for her as tight a circle of friends as possible.
Grace Jennings, Rainey Henry, Ursyla Baumgarten and Murphy have been playing basketball together since the sixth grade. Basketball is her home away from home. When she gets on the court with her buds, when they get to share together the buzz of friendship and success (St. Vincent is 19-4), Murphy is practically in a dream state.
“The fans in the stands, the cheerleaders, it’s all like a dull background when I’m the court,” said Murphy, a 5-foot-9 sophomore. “I zone out and get into the mode. It feels so natural.”
Murphy’s coach, Jim Fagundes, said she has made enormous improvement between her freshman and sophomore years. Murphy only has scratched the surface of her talent, Sagundes said.
“If Jacalyn keeps improving the way she has,” Fagundes said, “I can see her playing college ball. By the time she is a senior, she could be the best player in our league. She goes as hard as anyone on our team and I push her as hard as anyone else. I have been coaching for 25 years and she is one of my favorites.”
That she plays the game hard and at a high level, that she doesn’t stop to catch her breath, all that is not lost on her, her mother or her father. She has cystic fibrosis, a life-threatening disease that has no cure. Jacalyn has decided to live in the moment, drink it in. CF demands her attention, her maturity. Right now. All the time. It demands she take on more responsibility that is common to a 16-year-old.
“To those parents out there who have a newly diagnosed child with CF,” Mike said, “they should know there’s a lot of hope out there. Jacalyn is an example of that.”
Handle it or let it handle you. Jacalyn Murphy has made her decision. She will not be a spectator to her disorder. She will not be spectator to her life, either. Like she would say, what’s to pity?
For more North Bay sports go to Bob Padecky’s blog at padecky.blogs.pressdemocrat.com. You can reach Staff Columnist Bob Padecky at 521-5223 or email@example.com.