Moultrie Observer

Local News

January 28, 2012

Youth fights disease, writes novel

MOULTRIE — The summer before Heather Globerman started sixth grade, two things happened that changed her life forever — she developed Complex Regional Pain Syndrome (CPRS), also known as Reflexive Sympathetic Dystrophy (RSD), and she started writing a novel, “Out Tricked and In Danger,” which has now been published.

“Don’t give up and keep going. You never know what’s right around the corner,” was this young author’s advice to others who might also be suffering from RSD.

According to the Reflex Sympathetic Dystrophy Syndrome Association’s website, RSD is a chronic neurological syndrome that is best described in terms of an injury to a nerve or soft tissue that does not follow the normal healing path. This can be characterized as severe burning pain, pathological changes in bone and skin and extreme sensitivity to touch among other things.

“Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms,” the website states. “Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.”

Globerman, who is now in ninth grade, puts a personal face to these statements with her account of her experiences over the past few years with this syndrome.

“It started the week after I got back from summer camp. I thought it was just a sprained ankle. We didn’t even know what was going on until seven months later,” she said.

“It was a long process getting her diagnosed,” said her father, Mark Globerman.

“I remember having to go to so many doctors. It was ridiculous,” she added.

Heather said that when she started school that year, she didn’t get to start it out normally because she was in so much pain. She said she didn’t get to participate in P.E. and many of her fellow students and teachers didn’t believe her when she told them that she was in excruciating pain. She said she ended up on crutches.

“But all it did was mess up my shoulders and back,” she added.

Eventually, she was in a wheelchair and the pain was getting so bad that it was distracting her from her schoolwork, said her father.

When she was finally diagnosed with RSD, it had spread from her ankle throughout her right leg.

“As the pain gradually spread through her right leg, she stopped writing, limited movement, withdrew from her friends and was almost ready to quit school,” said her mother, Cathy Wentworth.

“They put me on a bunch of different medications,” Heather said.

She said in seventh grade, the medications made her so sleepy that there was one period that she pretty much slept through every day. She said since she had a 100 average in the class, the teacher didn’t mind.

“But I wanted to be awake,” she said vehemently.

In looking for treatment she has gone to a couple of hospitals and through physical therapy.

“I’ve spent a lot of time at Emory. RSD is just so rare the physical therapist don’t know how to deal with it,” she said.

She also went to Pediatric Pain Rehabilitation Center (PPRC) in Boston, which is one of only two centers like it in the United States, said her father.

“She was blessed enough to get accepted,” he said.

The program takes only five kids at a time, Heather added.

According to its website, “The Pediatric Pain Rehabilitation Center is the most comprehensive stand-alone, day hospital program of its kind in the United States, offering intensive rehabilitation to children and adolescents who have not responded to traditional outpatient treatment. Participants are typically between 7 and 18 years old and receive daily occupational, psychological and physical therapy sessions for a minimum of three weeks. Additionally, our center offers children one hour per day of academic instruction by contracted tutors.”

Heather said that she was there for almost five weeks; it was really hard for her because she was really depressed and missed home. She said it did get easier when she got to know the other kids.

“I went from barely being able to walk to being able to run and swim again,” she said.

However, she said, the pain is still there and she wishes that the treatment would have completely made it go away.

“The PPRC gave Heather her life back. She still suffers pain from RSD but is commanding her own life. She completed her novel, runs cross country, swims and continues to pursue academic excellence,” said her mother.

“For the most part, I’m back to normal and we’re going to try a new treatment in Atlanta,” she said.

She has found the cross country training to be a really good distraction from her constant pain, she said, smiling and showing her T-shirt that read, “Cross country is a mental sport ... and we’re all insane.”

Writing is another big part of helping her to not focus on her pain, she said.

“I just loved writing that story. It was a whole other world I could escape into,” she said.

She said the idea for her novel started when she had gone to summer camp that year before sixth grade and before she was diagnosed with RSD.

“I would have ideas for stories in my head all the time,” she said.

She said she had the idea when she was at camp but she thought to herself, “This is summer camp — who writes?”

Then, it just kept on bugging her and more and more of the story was developing, so she decided to write it down. She said she would write during her free time at camp.

“And before I knew it, I had 20 pages front and back,” she said.

She said she worked on her novel for the next two years and finished it when she was 13. Her main characters in her story are based on her friends. She said almost all of her friends have read it since the book has been published.

“My friend Olivia has been reading it since it was a rough draft. She’s sort of been my critic,” she added.

She said her friends like the book and have a good sense of humor about the characters being based on them.

Initially, when she sent her manuscript to the publisher, she said she was just really looking for a critique. She wanted to see what they thought about it and really didn’t expect anything.

“I didn’t think they were going to say ‘yes,’” she said smiling.

She said she submitted it in the month of August and heard back from them in October. She said she was sitting in class and got a forwarded e-mail from her mother. The e-mail was from the publishing company and, after class, when she opened it, the first word she saw was “Congratulations!”

“I jumped up and down and started screaming,” she said.

Heather’s book is available locally at Books & More and online at Barnes & Noble, Tate Publishing and Amazon, and Heather has dedicated the book to other children who suffer with RSD and the doctors and therapists who have helped her.

When asked if there could be another book in the works, she said, “Definitely.”

“Have you started working on the next one?” her father asked her.

“Page 80,” she said without hesitation.

To other young writers, she said, “Don’t be afraid to put yourself out there. Don’t worry about if people don’t like your ideas. It doesn’t matter. You’re the author.”

A book signing for “Out Tricked and In Danger” will be held on Thursday, Feb. 2, from 9:30 until 10:30 a.m., in the media center at C.A. Gray Junior High School.

“I’m not really used to all the attention but I’m excited. It’s gonna be cool,” said Globerman.

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