Order amid adversity

Posted
Sunday, April 13
LEE — Morgan Jubok looked at the neatly stacked books to the right of her computer in the school library and picked up the one on top, fanning the pages until she found the place she'd marked.

Around her, as classmates finished homework assignments, played mindless computer games and surfed the Internet, Jubok prepared to read a book in which she'd become engrossed.

It traveled with her to each of her classes on Tuesday morning, always on the top of her pile of notebooks, secured squarely underneath her thumb.

A year ago, the scene would have been unthinkable.

Jubok, 18 years old and dyslexic, had never chosen to read a book for enjoyment. Yet there she was, surrounded by other entertainment options, eight chapters into Hunter S. Thompson's "Fear and Loathing in Las Vegas," the third book she's picked up this school year.

"A friend of mine turned me on to the movie, and I've seen it a few times," Jubok said. "I knew I had to read the book. It's amazing."

More amazing is the array of obstacles that Jubok, a senior at Lee Middle and High School, has overcome throughout her academic and athletic careers.

Jubok's physical appearance — 4-foot-9 in height, with one purple sock and one orange sock on Tuesday morning — doesn't conjure traditional images of toughness. But over the past year, she's skied and played lacrosse on a pair of surgically repaired anterior cruciate ligaments, has read through jumbled letters and words, and has lived through seizures that cause her to shake and turn blue.

Jubok, who has epilepsy in addition to dyslexia, has taken on all of life's obstacles and become one of Lee's most active students.

The Becket resident skis at the varsity level for Lenox Memorial High School as a co-op athlete, plays lacrosse on a regional club team, is a member of the Lee drama club, serves as an active Girl Scout, and works as the managing editor of Lee's school newspaper.

All this from a girl who, according to her mother, couldn't read "fluently" until last year and took eight years of special-education classes.

Work with her mother, teachers and doctors has allowed Jubok to limit the impact that epilepsy and learning disabilities have on her life. Extensive physical therapy allowed her to qualify for this year's State Alpine Ski Championships after she tore the anterior cruciate ligament in her knees in February of 2006 and 2007.

She spent all of last season in goal for the Southern Berkshire club lacrosse team despite wearing bulky braces to protect her knees until surgery. She's back this year as the team's only goalie, and she started her season with a win on Wednesday.

Nothing, from damaged knees to a brain disorder to learning disabilities, has slowed Jubok.

"We knew a family back in New York where the daughter had epilepsy," said Mary Kay Pinkham, Jubok's mother. "They wouldn't let her do anything other than go to school — not even ride a bike. I wasn't going to let it stop Morgan, and she's never let it stop her.

"At this point, it's just a part of her life."

Jubok has found that none of her issues is a big deal, unless she allows them to be.

She tore her left ACL while snowboarding the week after her ski season ended in 2006. A year later, during February break, she tore her right ACL while demonstrating to a ski class how to go over a jump.

Two six-month rehabilitation sessions with a physical therapist followed, allowing Jubok to maintain her abilities. She finished the winter as the 10th-best skier from Berkshire County, a spot that allowed her to qualify for the state championships for the first time. She placed 73rd out of 171 skiers in the slalom and 129th in the giant slalom.

"The biggest thing (is that) she is always positive," said Jubok's physical therapist, Todd Lewis, who noted that Jubok constantly tried to speed the recovery process. "You see a lot of moping. She had a wonderful attitude."

Jubok's knees, though, likely were the least of her concerns while she followed a path littered with roadblocks.

Seizures are fatal only in extreme circumstances, so Jubok's epilepsy isn't a life-threatening condition, but it is a limiting one.

Epilepsy, also called seizure disorder, causes Jubok to suffer through five or six seizures a year, normally when she's stressed or overly tired. Abnormal bursts of electrical energy in her brain disrupt normal brain functions, causing the seizures, which began at age 3.

Before that, she could recite the entire alphabet. Afterward, her mother had to teach her from scratch.

The seizures occur with little warning, often with a few sentences that might be garbled or out of place. Jubok then can fall to the ground, her body shaking, her eyes rolling back into her skull and her face contorting violently.

"No one can prepare you to see your child's face turn blue," Pinkham said.

The seizures usually last a few minutes, with no way to stop them. They'll pass on their own, but Jubok instructs friends to roll her onto her side and hold her head, just in case her shaking causes her to knock things over or to bump her head against the ground.

Epilepsy can be managed with medications, but Jubok's doctors haven't found the right combination. She currently takes 10 pills a day and sees a doctor once a month. Both numbers are higher than normal because Jubok is in the middle of a medication change. Ideally, she sees a doctor every six months.

During each of the past three years, Jubok has suffered at least one seizure during the drama program's tech week, a period during which intense rehearsals last from 3 to 9 at night.

As a tech manager working in a booth overlooking the stage, Jubok often resorts to sipping coffee during the rehearsals to stay alert, occasionally drawing reprimands from her peers.

"She's a trooper," said friend Mike Quinlan, a fellow drama club member. "No matter what happens, she troops through it. We know she fights it."

Jubok's learned to do without the luxuries that many teenagers treat as necessities, things like a driver's license and late nights with friends. Her bedtime is two to three hours before David Letterman begins his monologue each weeknight.

Her primary regret is that she can't get her license. Becket, an isolated, rural town, is about 20 minutes from Lee, where most of Jubok's friends live.

"That's probably been the hardest thing for her to deal with," her mother said. "She always feels like she has to ask people for a ride."

Epileptics must show they've gone six months without a seizure to get a driver's permit. Jubok has gone that long just once since turning 16. On that occasion, she failed the written exam. Two weeks later, she suffered a seizure during a rehearsal for "Once Upon A Mattress."

Jubok can't be as spontaneous as her friends, changing plans at the last minute or spending long periods away from home because she needs both regular medication and rest to keep the seizures at bay.

"There are times that I get angry and I feel like I can't be a regular teenager," Jubok said. "I can't be spontaneous and just go to a party. I need to plan everything out, make sure I have my meds. Sometimes if I try to change my plans at the last minute, I'll call my mom and she'll often say 'No.' "

While epilepsy isn't fatal, dangers are associated with the condition.

A blow to the head, either during skiing or lacrosse, could do further damage to Jubok's brain or bring on a seizure. A seizure brought on by the stress of an event such as a drama production could last longer than normal, leading to permanent brain damage.

Jubok, though, hasn't let the possibility of injury rule her life. Nor has she let her learning disability deter her aspirations.

Dyslexia and epilepsy often go hand in hand, and Jubok must deal with both.

She stopped taking advantage of special-education tutoring at the end of her sophomore year, doing her work independently and entering a mainstream English class. The only advantages she currently receives are unlimited time on tests and grace on her poor spelling.

But even now, the epilepsy is evident in her work.

She types most of her papers in Microsoft Word on a laptop. Before using the spellcheck function, the screen is awash in red underlines. Pinkham estimates about half the words are misspelled.

Until moving to Becket three years ago, Jubok had spent her life in Somers, N.Y. She was uncomfortable in its larger setting, where other students knew her by reputation rather than by reality.

She fell behind her class in kindergarten and was entered into a remedial reading program in first grade. By second grade, she'd been diagnosed with dyslexia.

For most of her youth, she had to read every sentence three times to get any meaning from it. The first look helped the words come into focus, the second put them together as a sentence, and the third provided meaning. It was nearly impossible to finish her work on her own, meaning that her mother spent many nights reading to Jubok from her textbooks.

Jubok said she was never teased about being in special education — which included a smaller English class and a resource period during which she was free to get extra help — but she was concerned about how other students looked at her.

"I was aware of it," Jubok said. "I worried that people would think I was stupid. But I knew that I just learned differently than they did."

Pinkham's divorce from Jubok's father, and the pair's subsequent move to Becket — where they'd always maintained a second home — provided the fresh start that Jubok needed.

She began attending Lee, where she instantly felt more comfortable among her peers. Her academic abilities improved, and she seemed to participate in everything.

She excelled in her English class with former Lee teacher Frank Tempone to such an extent that he recommended she take honors English in her junior year.

"You teach four or five classes a day, and when you talk about a book you get the same answers," said Tempone, who now works at Miss Hall's School in Pittsfield. "I'd hear all the same answers, and then she'd say something with a totally different slant. I thought she was special. You could tell that she was thinking. You could see how bright she was."

Jubok did well in that class and has moved on to a creative writing course this year.

On Tuesday, Jubok, who spent much of her life reluctant to read aloud, pointed to a computer screen, reading a caption during her environmental science class.

"The four members of the kiwi family are ... 'something' ... to New Zealand," Jubok read to a classmate, inserting "something" for "endemic," a word she didn't know.

"Introduction of exotic species has contributed to the threatened status of the greater spotted kiwi," she continued, her purple mechanical pencil moving under the words as she spoke them.

In June she'll graduate from Lee, likely with a low-B average, and begin her trek toward what she hopes is a career as a photographer for a snowboarding magazine.

Jubok recently received an admittance letter from Chester College of New England, a small school in New Hampshire that she'll begin attending in the fall.

"When she got that acceptance letter, her eyes just lit up," her mother said. "She couldn't believe it. She said, 'I'm actually going to college.' "

That will be the next test. Jubok will bring the same liabilities to a venue where she won't know how her peers will react to her condition, a place where all-nighters can be standard and the amount of reading increases exponentially.

"I think I'm much more worried about it than she is," her mother said. "She's ready to go. I know how difficult it's going to be."

But judging from the past year — when Jubok went from hating reading to tackling "The Perks to Being a Wallflower" by Stephen Chbosky, "Light on Snow" by Anita Shreve and "Fear and Loathing" — she's confident the transition will be just another obstacle to tackle successfully.

"She's been an eye-opener for a lot of people at this school," said Lee teacher Mary Verdi, who served as the drama director the previous two years and taught honors English to Jubok during her junior year. "People have learned a lot from her. She doesn't see the injuries, the epilepsy or the learning disabilities as disabilities.

"She sees them as challenges."

To reach Chris Carlson: ccarlson@berkshireeagle.com (413) 496-6251.


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