Morgan Williams, 16, has more in common with the disease that’s tried to kill her than she’d like to admit. Neither pulls punches. They’re both tough as nails. They both hurt.
But Williams has another side. Crohn’s disease never lined its bedroom walls with “Hunger Games” and “Twilight” posters. Crohn’s didn’t grow up on retro ’80s music. It never bonded with dad on trips to the zoo, seeing which animals most disliked them.
“There was this one monkey that could not stand dad,” Williams remembers. “That monkey hated him.”
Crohn’s disease never torched a recliner to the ashen floor. Williams hasn’t either, but a girl can dream.
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“I’m going to set fire to this chair when I’m done,” she said.
On Thursday, Williams had another of those days where everything hurts. She hasn’t had a day outside her home or hospital since February, and won’t until the Lake Wylie Children’s Charity Benefit Concert in her honor Sept. 28.
Some 16-year-olds recall first kisses, first dances, first driver’s licenses. Williams remembers a first endoscope, first colonoscopy, first time downing that awful chalky milkshake for one of so many medical procedures.
“I remember the major things,” she said.
She’s through 16 surgeries now. Once, she and her parents heard Williams could die from one. Another time, she would have died had they hesitated to admit her.
“I wouldn’t have wanted (the doctor) to sugar coat it,” said mom Tracie.
They’ve given up most outside contact, public school, a large intestine. Crohn’s wrecks an immune system, so homeschooling started soon after the stomach pains at age 8.
Morgan sees herself as a free spirit and reformed couch potato. She always preferred a book to a hike.
“It has to have romance in it to keep me occupied,” the teen said. “But that’s just because I’m a girl.”
Now she wouldn’t mind a read outside. “A shame,” she calls it, that she “can’t make it to the door without huffing and puffing.”
“You never know what you’ve got until it’s gone, they say,” Morgan said. “I used to hate going outside.”
Morgan has good days, they just don’t last long. There’s always a drain or bag or sponge being attached to her body, always the threat of infection, or of finding colon or rectal cancer. She had a drain put in her stomach on her sweet 16th birthday, which hurt like the dickens.
“Best birthday ever,” she said.
Still, Morgan appreciates how her mom stays by her side when “she doesn’t have to do that.” She appreciates a day or a week feeling good. When she gets to sleep pain free, there’s no use talking to her. A boy band covered in winning lottery tickets wouldn’t interest her.
“That time when I was sewed up,” Morgan said of a recent stint between complications, “I was walking on heaven. Then I was disappointed again.”
The Williams family lives an extreme life, but one Tracie believes won’t last forever.
“She can have a normal life,” Tracie said. “She could have children if she wanted to.”
She doesn’t. Not knowing how Crohn’s is hereditary.
“I wouldn’t want to put a kid through what I’ve been through,” Morgan said.
Morgan dreams in the present. She loses herself in the fiction and fantasy of a good story. She refuses to consider where her own might lead.
“I’m just day by day,” Morgan said. “I stopped looking week by week and into the future a long time ago.”
The nearest she comes to forecasting her future is the benefit date in Lake Wylie. Morgan hopes to meet a band or two. She wants introductions to the people she hasn’t been well enough to meet, only seeing their faces getting pies thrown at them on the charity’s Facebook posts.
Morgan wonders what those people won’t do for charity, won’t do for her. Mainly she wonders where she can get one of those pies.
“I want to get a pie in the face,” she said. “I don’t even care if they’re doing pies in the face next year. I’m doing it.”
For someone mostly confined to that forsaken recliner, Morgan has an uplifting spirit about her the disease will never know.
Crohn’s never developed a phobia for zombies, never bet friends working Scarowinds that it wouldn’t flinch. Crohn’s isn’t obsessed with doctor selfies. It doesn’t have to catch its tongue when medication turns it loopy. Crohn’s never fell smitten with its physical therapist.
“Don’t get me wrong,” Morgan said. “I hate physical therapy any other time, but I love Tom.”
Morgan feels love, too. Even from those strangers layered in whipped cream. Those organizers who put events on all year for someone they haven’t met. It takes a good love story to get Morgan’s attention, her being a girl and all. And this one has.
“I want to be there,” Morgan said. “And I want to come back next year and help.”