The No. 1 cause …..

Leslie* and I were close friends growing up together in Harrisonburg. We shared school classes, neighborhood games, clubs and dreams. She was artistic and interesting. After high school, we enrolled in different colleges and drifted apart. The next time I saw her she was rail thin. Scary thin. I heard she’d had some problems in college, heard the words “anorexia nervosa” mentioned alongside her name, but until I saw her it didn’t sink in. Back then, anorexia was a relatively unknown condition, until singer Karen Carpenter died.

It was hard for me to understand my friend’s obsession with her weight and body image. After all, she was talented, beautiful and very smart. The problem,  I would gradually come to understand, was that everyone knew that – except Leslie.

Catherine Boyle (photo by Missy Bane)

Recently, I talked to a JMU alum who understands it well. As a senior in high school, Catherine Schuermann Boyle (’85) was on top of the world.  A high achiever at the head of her high school class, she had been accepted early decision to her No. 1 choice: James Madison University. Excited and hopeful, the future looked bright and promising for the 18-year-old. But Catherine was headed for rough waters. Despite stellar academic achievements while also holding down a job, Catherine learned to her dismay that her dream of entering JMU as a freshman was financially impossible. Instead, she enrolled at a local community college, swallowed her disappointment, and continued to work hard in school and at her job.

But something had been triggered deep in Catherine’s psyche.

By all outward appearances, Catherine was a success. She eventually made it to JMU, graduating from the College of Business in 1985 with a degree in accounting and four job offers. In time, she became a vice president at Crestar bank and married another banker before “retiring” when their second child was born.

But despite her success, Catherine struggled with a dark secret that few knew about — and that even fewer understood. “I was anorexic while I was at the community college and became bulimic while at JMU,” she says. “I struggled with it all through college.”

Catherine was not alone. Anorexia is the No. 1 cause of death in woman aged 15 to 24, according to Duke Medicine.**  Number one. The statistics are sobering:

    • Among western women between 15 and 24 years old, approximately 1 out of every 200 suffers from anorexia nervosa, while about 1 in 50 is bulimic.
    • Between 10 and 50 percent of American college women report having binge eaten and then vomited to control their weight.
    • Approximately 40 percent of American girls ages 9 and 10 report being or having been on a diet to lose weight.
    • Some 50 to 60 percent of teenage American girls believe they are overweight, yet only 15 to 20 percent of them actually are overweight.**

Catherine says that many factors contribute to eating disorders, ranging from physical, emotional or sexual abuse to genetic predisposition to difficult circumstances, but those who find themselves struggling with anorexia, bulimia and other eating disorders all end up struggling with an eating disorder “mindset.” Reaching and changing that mindset is critical to successfully overcoming eating disorders.

Northfield’s Cumberland Home

Today Catherine is healthy and has turned her experience into a means of helping others. She has written and published about the disorder. In 2010, she was named chief operating officer of  Northfield Ministries, a residential treatment facility for women near Richmond, Va., that opened this spring. Here women can find the help they need to change that all important mindset.

The problem with most treatment plans, explains Gwen Seiler, the founder and director of Northfield, is that they treat the symptoms without addressing the root causes, which are deep and complicated. Many young women whose lives hang in the balance are admitted to hospitals for short term treatment. When their weight stabilizes, they are released, but their mindsets haven’t changed. The medical crisis  is over, but the problem is still very real.

“The rubber meets the road when you go back home,” Catherine says.

Changing that mindset, helping young women find freedom from the torment of anorexia and bulimia, is the focus of Northfield, the only non-profit, faith-based facility of its kind in Virginia and surrounding states. Northfield works with many families who have exhausted all of their resources. Treatment across the country is limited and expensive, up to $45,000 for a month’s stay.  By contrast, Northfield offers affordable options, in large part because of the tremendous support they have received.

“People have come from all over the country for working weekends,” Gwen says. Businesses donated goods and time, and often both. Over the past five years, with volunteer help, the residential Cumberland Home has had a slow and steady extreme makeover. “We want to be the place that so many people need,” she says.

Northfield has found much support in the in the JMU community around Richmond. Among the supporters are Wallace and Nita (’48) Chandler, Frank and Brenda (’80) Bell, Mike (’87) and Blair (’87) Grappone and Anna Daddio (’11)  who have all lent their support.

Another strong supporter is Kellyn Cunningham (’11) who graduated from the School of Communication Studies. “I was motivated to get involved by how much it touched my life.” Kellyn, like Catherine, struggled with an eating disorder while at JMU, but with Gwen’s help, she overcame it. “I was surprised to learn that so many more young women/students struggled with eating disorders than I realized. I wasn’t alone. I think isolation is one of the greatest weapons against recovery, and having a place with Gwen and the other girls gave me encouragement and hope,” she says. “Unless someone has experienced an addiction, it is hard to describe the sense of hopelessness and downward cycle eating disorders can create. Northfield offers freedom.”

Gwen Seiler has her own JMU connection. She spent two years at JMU before transferring to Virginia Commonwealth University to finish with a degree in nursing. It was in nursing school that she first encountered eating disorders. At the time, she felt burdened by one young woman’s problem. “How do you help?” she asked. Now she knows.

Gwen and Catherine understand how great the need is, and it spurs them both. The solution for many of these women is simple yet daunting. “If you can heal the thoughts,” Catherine says, “you can heal the body.”

Last year, my friend Leslie died unexpectedly. I don’t know for certain, but I suspect that anorexia eventually killed her. As in so many cases, the root cause of these deaths is hidden. If nothing else, an eating disorder wrecked her life. She was never able to reach, break free and hold on to the lifeline that Catherine and Kellyn  found.

Knowing Leslie, knowing the light that went out — the beauty, intelligence and talent that disappeared — convinces me of the importance of Northfield’s mission. Sometimes it’s critical to change a life in order to save it.

To learn much more Catherine’s work with Northfield  and how you can help, visit their website at http://www.northfieldministries.org/  and Catherine’s website at  http://www.catherineboyle.com/

*name has been changed.              ** http://health.usnews.com/health-conditions/mental-health/eating-disorders

Can legislatures heal?

Reports of autism cases per 1,000 children gre...

Diagnoses of ASP have risen dramatically. (Image via Wikipedia)

What would you do if your child were diagnosed with a baffling condition and the best treatments were expensive and time consuming? What you you do? Anything and everything, I expect.

That’s the choice facing parents whose children have been diagnosed with autism. Autism spectrum disorder is a puzzling, disheartening, frustrating, frightening and compelling condition that effects thousands and thousands of people and their families every year. It doesn’t fit neatly into a box. It doesn’t follow the rules. There are no pills to cure it and it doesn’t respond to a quick medical fix —  one part of the maddening puzzle of autism. Treatment for the disorder is long term, intensive and expensive — but absolutely critical for these children.

Here are some statistics about autism from the National Autism Society’s website:

  • 1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
  • Prevalence is estimated at 1 in 110 births.
  • 1 to 1.5 million Americans live with an autism spectrum disorder.
  • Fastest-growing developmental disability; 1,148 percent growth rate.
  • 10 – 17 percent annual growth.
  • $60 billion annual cost.
  • 60 percent of costs are in adult services.
  • Cost of lifelong care can be reduced by two-thirds with early diagnosis and intervention.
  • In 10 years, the annual cost will be $200-400 billion.
  • The cost of autism over the lifespan is $3.2 million per person.

Another maddening aspect of autism is that many insurance companies won’t cover the expenses associated with necessary care and promising treatments.

Gay Finlayson

Gay Finlayson (’76), one of our Be the Change people, knows this first hand. Two of her three children, Marit and Neil, were diagnosed with autism. “Our insurance company cut us off,” Gay says. In fact, the whole family lost coverage after Marit’s diagnosis.

Early in Gay’s journey with Marit and Neil, she began looking for answers about the puzzling behaviors exhibited by her daughter. Back then, few answers were to be found. Autism was not well understood. Few people even knew what it was. Initially, no one could give Gay answers to why Marit was the way she was. Her mother, however, suggested that Gay, who was living in New Mexico, have Marit evaluated at JMU’s Early Childhood Development Center. The late Dr. Elizabeth Finlayson was quite familiar with Madison. She served as dean for summer school, was founder and director of the Bachelor of Individual Studies program, and she directed student orientation until her retirement in 1985.

Gay’s mother’s instinct was correct; the people at JMU knew. Gay finally had a diagnosis. Then she went to work. That was more than 20 years ago. Since then Gay has sought answers and assistance for her own two children — and for thousands of others.  And she’s become a champion at lobbying legislatures to help. “I would have never imagined that public policy would ever become even an interest much less a passion,” she says. “I think it speaks to just how much having children changes how we view our world.”

I heard from Gay recently, prompted by encouraging news out of the Virginia General Assembly. This week, the Senate passed a bill requiring insurance companies to provide care for these individuals. Although the Virginia bill is limited and still needs the governor’s signature, it is clearly a step in the right direction.

Gay continues to work for improvements in the support and care of individuals challenged by autism. She writes: “I just got back from attending the Combating Autism Act grant meeting in D.C. The bill sunsets this year, and we’re all feeling apprehensive about the political climate in the House of Representatives.  I’m waiting right now for a bill I’ve been working on to be introduced in our legislature. It’s an IEP supplement for children with autism in public schools in New Mexico.  I’m managing a couple fun programs here, plus doing some other public policy work with state partners.”

An uphill battle for funding — for healing — that Gay Finlayson continues to wage.

By the way, Gay is not the only Duke in her family. In addition to her mother, Gay’s sister Terry Finlayson (’79) and brother Michael Finlayson (’75) are JMU graduates, as well as their dad Col. Hal Finlayson, who earned an MBA from JMU in 1980.

You can learn more about ASP here:  http://www.nimh.nih.gov/health/publications/autism/complete-index.shtml

To read more about Gay Finlayson and her work as an advocate for individuals with autism click here: http://www.jmu.edu/bethechange/people/finlayson.shtml

You can also read more about ongoing work at JMU to unlock autism here: http://www.jmu.edu/ttac/autism.shtml

Changing puzzles into progress

 

Heather Schwarz

Heather Schwarz (’08, ’09M) is a new face on our Be the Change website.  Heather received the Heather M. Empfield Scholarship in Autism for distinguished teaching from the school division where she teaches children who have been diagnosed with autism spectrum disorder (ASD).  As a first-year teacher last year, Heather’s work with these special — and challenging —  students was exemplary. Autism is a complex and puzzling condition that afflicts thousands of children every year, and by it’s very nature, requires a special brand of teaching and commitment. In her classroom, Heather changes puzzles into progress.

According to the National Institutes of Health website: “Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior.  Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, the rare condition called Rett syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS).  Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.  Experts estimate that three to six children out of every 1,000 will have ASD.”

Through her skilled, dedicated and compassionate teaching, Heather is changing the lives of children and also their families.  Heather’s commitment to helping change these students’ outlook and future is inspiring.

Read more about Heather here: http://www.jmu.edu/bethechange/people/schwarzHeather.shtml

You can also read about another Be the Changer, JMU alumna Gay Finlayson, who also is changing the lives of individuals and their families challenged by ASD:  http://www.jmu.edu/bethechange/people/finlayson.shtml

And stay tuned.  In coming weeks, we’ll be telling you about a current student who has started a new program on campus for local children with special needs.

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