MYRTLE GROVE, Fla. (BP)–Snatches of feelings lie scattered across Stephanie’s bedroom, randomly tucked into pages of old notebooks and stuffed away in dresser drawers.
Some scraps of paper contain lyrics to songs, others bear words expressing deep pain and a longing for understanding.
Seventeen-year-old Stephanie Williams is all too familiar with trying to put into words the effects of Ankylosing Spondylitis (AS), a debilitating, incurable rare disease which causes inflammation and swelling of the body’s joints and other organs. Stephanie is not alone in her illness, however; her 12-year-old sister, Hannah, also suffers from the same disease. Their red-headed younger sister, Rebekah, 10, does not have the disease.
The girls’ mother, Michelle Williams, said each of them is not only affected in different ways, but each deals with pain very differently. The family are members at Myrtle Grove Baptist Church near Pensacola, Fla.
“What works for Stephanie does not work for Hannah,” Michelle said. “What works for Hannah does not work for Stephanie.”
Vivacious and outgoing, Stephanie, with big blue eyes and soft blond hair, is more outspoken, while Hannah, a brunette with a tall, military bearing is more stoic. “Hannah has a tendency to get real quiet,” Michelle offered. “Stephanie likes for everyone to know that she’s hurting.”
Stephanie’s symptoms were undetected for years as she pursued running and then swimming, even making it to the Junior Olympics in elementary school. When she was in the fifth grade, things began to take a turn for the worse and she ended up being able to attend school only part of the time. Now nearly 17, she continues schooling from home with Hannah, who is also unable to attend school.
“I think Stephanie’s learned to deal with the pain by maturing,” Michelle told Florida Baptist Witness in an interview in the family’s home. “I think when you are younger, it’s difficult to understand why a doctor cannot fix it and the older you get you realize that the doctors don’t have all of the solutions.
“Some days are going to be good days and some days are going to be bad days, there’s really nothing to do but to manage it,” Michelle continued. “Managing it just really comes from the individual.”
Managing the pain is something the entire household deals with as well. Michelle, who works outside of the home so the family can keep up with medical costs, said she is challenged when both of the girls are having a “bad day.”
“The challenge for me as a mother is trying to find the energy to not let my emotions show through, or my frustrations show through, or more fatigue show through and be able to take care of them physically is very demanding,” Michelle said. “There are many days they both feel weak and you don’t want them to fall so you have to support them getting out of bed or walking. And they both have enormous amount of pain. You can’t put it on a scale.”
Using ice or Tiger Balm to relieve the ache she feels mostly from the waist down, Stephanie said she reads, writes or sings to distract her from the unending pain. Nicholas Sparks and Frank Peretti are among her favorites. Stephanie shares her love of reading with her younger sister by reading aloud from Harry Potter books. Hannah said she listens and sings to music, specifically BarlowGirl, whose first album includes “Superstar,” to keep her mind off of the pain.
Prayer is the final boost that gets the girls over the edge.
“Many days I’ve sat on the edge of their bed and prayed with them because, to be honest, there’s nothing left to do,” Michelle said. “They want to go to sleep and when they wake up they want the pain to be gone. The best thing I can do is to pray with them and be an intercessor for them and when they are too weak to pray and they don’t know what to ask for, to try and talk to God for them and through them and pray for Him to just come down on them.”
Married at 19, Michelle said she was told at first she couldn’t have children, but credits God with blessing each of the three she eventually birthed. She and her husband, Kevin, a deacon at the church, dedicated each child to God when they were born.
“I know God works in our lives and I know even though these have been some very difficult years for our family, there’s never been a moment that I doubt that God is with us,” Michelle said. “That doesn’t mean I haven’t asked why we were chosen for this, especially in the beginning, but I’ve tried to remind the family that God’s with us.”
Their pastor, Ron Lentine, has taken an active role in encouraging both girls to use their gifts in leading worship. Stephanie writes the lyrics and music to songs she performs on her guitar. Hannah, who was very active in ROTC color guard and played basketball, now sings back-up and plays the drums.
“The Lord can take a deficit and turn it into an asset to give these kids hope,” said Lentine, who has provided the family with resources from Jennifer Rothschild, Joni Eareckson Tada and Beth Moore — women known for strong teaching in the midst of personal struggles — and hopes to assist in Stephanie’s development in the area of writing, singing and speaking.
Crediting Michelle and her mother, Gleaner Thompsen, as fine models of Christian living, Lentine said the family is “truly a real testimony to their faith.”
“We’re hoping there will be a breakthrough for Stephanie, giving her hope that there’s something she can do with her life. She can, even with her disease, get on a computer and write,” Lentine said. “We want to give her a hope for the future.”
Stephanie said she began to write nearly a half dozen years ago, after being diagnosed with AS. At first it was songs and then as words began to crowd her mind and she couldn’t fit all of her thoughts into songs, she began to write essays.
Using her blog on MySpace.com, Stephanie said her writing has been mostly to inform and encourage people — and ultimately express her feelings and emotions.
“So many people just can’t understand how I could look fine and be sick, because I don’t look sick,” the teen said. “You know, so many people think if they were in my position, they could live my life better than I can. And that’s one thing that really gets me.”
Sometimes overwhelmed by well-meaning friends who want the girls to look at alternative medicine or the latest diet related to the illness, Stephanie said people get offended if the family doesn’t choose to respond.
Losing friends and boyfriends hasn’t been easy for the star pupil who looks at other teens in their varsity letter jackets and longs for what might have been. It was after she and her former best friend endured some rocky times and she felt abandoned, Stephanie poured out her heart in words.
“I am at the point where I think no matter what you do you are always going to have someone who thinks bad about you — and as much as I don’t want that to be true, it is,” Stephanie said.
Recounting a recent day when she was having a “breakdown” and missing her friends and thinking no one cared, Stephanie said her mom gave her a pep talk: “She said, ‘It’s times like these you have to reach down and pull the bootstraps tighter and pull yourself up by your bootstraps.’
“I was like, I can’t pull myself up by my bootstraps,” Stephanie mimicked herself in a high-pitched voice, “they’re broken because I’ve been pulling too much.”
There are many others, Stephanie said, who suffer from chronic pain, and realizing that puts things into perspective. She and Hannah both volunteer regularly at a ranch for special needs children outside of Pensacola where even 2-3 year olds suffering from Cerebral Palsy, arthritis and Tourette syndrome ride horses. Her interest in therapy may result in a career as an occupational therapist she said, ruling out more physically demanding careers such as physical therapy.
“I want to be able to interact with kids who are gong through what I am going through,” she said. “I want to be able to say, I did live and I did have fun times and I am not physically better, but I am better.”
Admitting she’s been upset by extra pounds she put on in the last few years, Stephanie said she knows her illness hasn’t made it easy to keep it off—but she’s firmly committed to shedding the extra pounds and keeping as physically fit as possible.
“I’ve learned that I have to exercise,” Stephanie said. “It’s gonna hurt to exercise, but if you lay in bed and do nothing, you’re going to hurt worse.”
Stephanie said there are probably days she should push harder, but admits to sometimes being tired and discouraged.
Having a new friend she writes to seems to help.
“Writing is the only thing that I can do that expresses my point as much as I need to,” Stephanie said. “A lot of times I don’t say what I’m really feeling because I don’t want to complain and I don’t want to drop this load on people who have other things to do.”
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This story first appeared in the Florida Baptist Witness, online at www.FloridaBaptistWitness.com.
