Monday, 08 March 2010 19:41

Emily Fischer sits with her mother, Marcia, who said she wasn’t able to visit as often as she would have liked but attended therapy sessions with Emily to understand what she was going through.

She described herself as a salesperson, a computer program and database manager. Others described her as beautiful, talented, smart, having everything going for her. Her parents described her as athletic, humorous, organized and dependable.

But on the inside, Emily Fischer was sensitive, a perfectionist, whose feelings were hurt easily, who put a lot of pressure on herself. Emily was perfect to the outside world. She gave the impression that everything was always fine. But the tendency to hold things in and the inner battle to overcome her fear of failure that drove Emily Fischer to a life no one ever imagined she would live.

Marcia and Arnie Fischer grew up in Ankeny, raising Emily and her older brothers. Emily graduated from Ankeny High School with many accomplishments and was involved in sports.

"She was a bright little girl,a " recalled Marcia Fischer, Emily’s mother, as she showed photos of Emily, trying to give me some sense of who she was.

Her mother said she had "that perfectionist personality" and a sensitive spirit allowed her feelings to be hurt easily.

Arnie recalled when Emily was in high school and her team made it to the state basketball tournaments.  

"Her dad was always semi-coaching her from the stands," Arnie said, referring to himself in third person as he grinned. "She hated for me to do that. It really bothered her and drove her crazy."

He said instances that would be minor to most would bother her a lot.

Shoes in a row and car always clean, Emily was very organized.

"If you wanted something done, you went to Emily and she would have it done before you could turn around," Marcia said.
 

Emily decided to attend Iowa State’s College of Business.

Her father, Arnie, is an ISU alumnus, and her brother also attended Iowa State, where he belonged to a fraternity. With her brother’s encouragement, Emily joined a sorority and found Kappa Kappa Gamma.

It wasn’t until Emily’s sophomore year that Marcia Fischer got a phone call from Emily stating she believed she had an eating disorder, and that she was going to attend a program of Story County Hospitals in Nevada that treated addictions and eating disorders.

"A sorority sister who also had an eating disorder encouraged Emily to go to the program, " Marcia said.
 

Unlike today, there was no Website with information about eating disorders to help them understand exactly what their daughter was going through, or how to handle the situation.

"I didn’t know much about it, so I started learning right along with her," Marcia said. "I went to treatment with her at Story County, and I tried to read books and what people had written about eating disorders."

After about two and a half months of therapy, Emily completed the 12 step program and seemed healthy again.

"After she went through that first program and felt pretty good, we didn’t really think about it too much. She really said she spent a good five to six years feeling healthy, so we thought it went away to a certain degree."

Arnie and Marcia weren’t always around Emily those next couple years of college. Her senior year, she roomed with a friend, Kimberly Westerfield.

 

Kimberly and Emily became friends through classes together. The two shared running, Christianity and their goal-oriented attitudes. Kimberly described Emily as beautiful and athletic, and said Emily appeared healthy and normal. Kimberly knew Emily had struggled with an eating disorder prior to their senior year, but she never recalled noticing Emily practicing bad eating behaviors, and said she and Emily never talked about eating disorders.

 

"I guess you always wonder in the back of your mind," Kimberly recalled. "I can picture her with an apple and eating healthy a lot, but she didn’t pig out and she was always a runner."

After graduating in 1992, Emily got a job, and she traveled so much that her parents didn’t see her regularly.

a "I don’t think it ever completely left her. I know she was still playing around with it," Marcia said.

Kimberly and Emily kept in contact. Emily even moved to Kansas City to work for the YMCA of Greater Kansas City, where Kimberly also moved.

While in Kansas City, Kimberly got engaged. Then she and Emily went their separate ways.
 

"Because she traveled around so much, it was hard to keep track of where she was and how she was doing," Kimberly said.

After working for the YMCA of Greater Kansas City, Emily returned to Des Moines to work for a Christian book store. "She became a Christian her sophomore year of college when she went through that first treatment program in Story County," Marcia said proudly, sitting straight and nodding approval.

The program that was supposed to answer the Fischer family’s prayers, and a phase that was supposed to pass in Emily’s life.

The job in West Des Moines led her to the job that would, in the end, have bad consequences for Emily’s health.

She became a sales representative for Bob Siemon Designs, selling retail merchandise to Christian book stores, and Emily’s job entitled her to cover vast territory, from Atlanta to South Carolina.

 

Emily’s parents rarely saw her.

 

Without consistency of a daily routine, Emily was unable to create a close knit of friends, a support system she had back home. She began to fear that her eating disorder was back.

 

When she relocated for her job, she would always try to attend sessions, but that didn’t seem to work well, her mother explained, as Emily’s attitude was, “if I can’t be there every Tuesday, then I probably better just not go.”

Emily felt she knew more about her eating disorder than her therapists and felt they didn’t truly understand her.

 

"I believe she was probably a little bit right," Marcia said. "Sometimes the best therapists are those that have had some problems themselves, come out of it, and then gone on to help others, but I think what she was really saying was a they can’t help me, I don’t want them to help me."

Since Emily loved her job and was good at it, she kept going, applying her perfectionism.

"She was a very creative person within her major in the field of marketing; she really had some skills," her father said.

 

The Bob Siemon job then led Emily to work with Provident Music, a recording studio for Christian artists in Franklin, Tennessee, a suburb of Nashville. Emily seemed to enjoy it.

 

"She would call and say a Mom, I met Michael W. Smith this morning!" her mom remembers, smiling as she hears her daughter’s voice in her head.

Marcia and Arnie tried many times to visit Emily, to see how their daughter was holding up. But as the disorder took a tighter grip on Emily, she tried to hide her appearance from them.

 

"We had tried to go see her, but eating disorders are very isolatory, and there is a lot of shame with it," Marcia said. a "As she started dropping weight, she didn’t want us to see her."

 

Emily’s employment with the record company ended due to downsizing. Shortly after, Emily called her parents. Her disorder had fully consumed her; she knew she needed help.

 

The Fischers found a residential treatment facility in Wickenburg, Ariz., called Remuda Ranch, but Emily was too weak and medically unstable to travel. They requested that Emily get the necessary lab tests and blood work done to make sure she was able to travel because of how critical she described her health to be. With no permanent doctor, Emily entered a walk-in clinic in Tennessee. The Christian medical clinic performed the tests and blood work. Seeing her condition, two nurses kneeled and prayed by Emily’s side.

The results showed that Emily’s hemoglobin and potassium levels were critically low, and she could not travel until these levels were stable. Emily underwent a blood transfusion.

 

Once her body drank in the nutrients her body needed badly, she left for Remuda Ranch.

 

A nurse from the clinic in Tennessee went a "above and beyond" in transferring Emily from Tennessee to Arizona.

"I don’t know if Emily would have made it to Remuda sometimes without Joni," Arnie said.

 

A nurse whom the Fischers believed to be an angel gave Emily the support she needed. Joni drove Emily to the airport, helped her with her bags and sent Emily on the plane to Arizona. She even took care of Emily’s matters left in Nashville, such as her apartment and mail. After Emily arrived for treatment, the nurse kept in contact with Emily, sending her love and prayers.

"Joni felt that God had told her to help Emily," Marcia said.
 

When Emily arrived at the Phoenix airport, someone from Remuda Ranch was waiting to drive her to Wickenburg.

Remuda Ranch specifically treats women with eating disorders and is big enough to accommodate many women. It has a variety of therapy treatments such as equestrian, art, nutrition and therapy sessions. The Christian-based residence also emphasizes spirituality.

"It was exactly the place that Emily was looking for," Arnie said. "She didn’t want to be mixed in with people who had other addictions such as alcoholism and drug abuse "she didn’t feel the treatment was the same."

Keeping in close contact with Emily through notes, e-mail and phone calls, the Fischers had an opportunity to see their daughter when Remuda Ranch held its annual Parents Week after Emily had been there for one month.

Arnie, Marcia, and Emilya tms brother took a week off to see her.

"It was a nice blend, I thought, of the mental treatment as well as the weight restoration treatment," Arnie said.

"That’s a difficult thing to do. You have to have a certain amount of body mass to have proper brain cognition to compute and understand as well. I think that’s why their initial focus was weight gain, so that they could get to the psychological part of the illness."

 

At Remuda the patients work closely with dieticians, who monitor what each person needs to restore body weight. The dietician meets with the women to accurately determine the number of calories and specific needs of each individual to plan the menus. In addition to three meal times, patients were also provided daily snacks.

"In talking with the other parents at Remuda, we all seemed to have similar thoughts," Arnie said. "We would say that they just don’t seem to want to get better; their actions don’t show that they want to get better. That for some reason, they keep going back to their bad behaviors."

Since 1990, Remuda Ranch has treated more than 10,000 individuals with eating disorders and is said to be the nation’s leading eating disorder treatment center, holding a 95 percent success rate. Emily did seem to regain the weight she was hoping to, and after two and a half months of treatment, she voluntarily returned home.

Arnie moved Emily’s belongings from Nashville to Ankeny, where Emily would now live and, hopefully, find some comfort being around her hometown and the support of her family close by.

But Emily soon lost the weight she had worked so hard to regain. The disorder had dug its way back into Emily’s life.

"When she was really sick and living with us, it definitely caused a lot of tension at home and fractured a lot of the relationships within our family," Marcia said.

"It’s not easy living with someone with an addiction."

Emily needed control over everything when she lived at home: what she ate, her space and her environment.

"It was a control issue," her father said. "She needed some control in her life, and so it was the one thing she could do to have some control in this chaotic world."

Emily’s parents watched as their daughter spun out of control, only eating certain foods and never enough. By that time, it didn’t do any good to tell Emily to eat more.

"It’s like telling a brick wall to move, if you don’t want to do it, you’re not going to do it," Marcia declared.

Frustrated that the eating disorder was still in control of their daughter, the Fischers started searching for another facility.

"We just kept looking, searching for a facility that would eventually turn that key, flip that switch, and that would say, a OK, now it’s OK for you to eat these foods, now it’s OK for you to restore your health," Arnie said.

The Fischers turned to the only inpatient facility in Iowa, the University of Iowa Hospitals in Iowa City, hoping they would find the missing key that would unlock Emily from this world of darkness and allow her freedom from the struggle within her.

"It’s like some negative tapes going on in your head saying a don’t eat, you will be able to control your environment if you don’t eat, you will be worth more if you don’t eat, and that’s the voice she was listening to instead of the tape we want to play in our heads that we are worthwhile and that we are valuable," Marcia exclaimed.

Struggling with these inner voices playing over and over, Emily spent the next four months in the University of Iowa Hospitals Eating Disorder Program.

But this time, Emily was not among only women, nor among only those suffering from eating disorders. The facility accepts men and women and all addictions alike. It was back to a strict routine, structured meals, therapy and the strain of security, no one going out or coming in.

"It’s not a fun way to spend your life," Arnie said. "In these facilities, you can’t get out, people can’t get in, and they check everything that passes through."

Arnie said they even restrict parents from coming in and out of the facility to see patients and that they weren’t even allowed to take Emily out until she was there almost three months; until she regained enough weight that it was safe.

"I remember the first time she got to go out, she was so elated," Arnie smiled.
 

"Oh, the sunshine!" Marcia remembered her daughter saying aloud.

Emily loved her freedom and the sense of independence she was denied in treatment facilities.
 

"This eating disorder cost her her freedom," Marcia said, a "and it cost her her independence."

Emily spent four months in the inpatient program at the University of Iowa Hospitals, and another four months in outpatient treatment. Yet, Emily was still unable to maintain the weight she had gained during treatment.

The key that would wake Emily from this nightmare seemed to be fading into the background, a hazy image she was unable to reach out and grab.

She then checked into the Methodist Hospital in Minnesota, but she was not there for more than a month.

By this time, Emily probably thought a I’m never going to recover from this,” Marcia said.

Emily was becoming resistant to treatment, and she was tiring of being in hospitals for months at a time.

a "It was just very frustrating for us," Arnie said, a "because it just defies all logic."

Arnie described the logical thoughts that friends and family of eating disordered people ask themselves. Knowing they suffer from weight loss and knowing that if they would just eating a proper amount of food to help them regain their weight and health, people ask why they don’t just do that. But Arnie said sufferers don’t think that way, "it’s a power beyond that."

Emily, resistant to treatment but still trying to find that key, checked into Meritcare Hospitals in Fargo, S.D.

She spent another three months trying to help herself. All the while the eating disorder had taken total control of her. As osteoporosis had also set in, Emily was struggling a "mentally, physically and psychologically.” She voluntarily checked out mid-July.

"She was expecting to be good at everything, and any time she failed at anything, I think it really affected her because she didn’t have many failures," Arnie said.

Emily made the trip back to Ankeny. Arnie’s mother, Emily’s grandmother, was living in a nursing home, so her house, about five miles from Arnie and Marcia, was vacant. Emily moved into the home so she could maintain some sense of freedom and privacy.

By this time, Emily’s mother explained, she had to come to terms that her daughter, who had been successful at everything she had done, might actually fail. She believed Emily knew she didn’t have long to live. Something that started in college had followed Emily around the country. From Georgia to Tennessee, Arizona, Iowa City, Minnesota, South Dakota and back to Ankeny, it had dug to the depths of her soul and robbed her of her identity, her spirit and her ability to live.

As hard as it may be for a parent to face that his or her child may not have long to live, Marcia Fischer had come to terms with it.

Emily spent the next five weeks elated because she knew she wasn’t going to be sent to another hospital, as her parents promised. She was living on her own, enjoying her freedom, and close enough to her parents that she could see them regularly. But the eating disorder had taken such a toll on her and had so much control over her, that even being home again and coming to terms that she was probably going to die did not phase her. She could not just shake off the eating disorder like a cobweb.

 

"I think those last five weeks were probably the happiest weeks she’d had in a long time, and I’m glad that we could give that to her," Marcia said as she began to well up with tears, remembering those last five weeks she was able to see her daughter alive.

Arnie, hanging on to the thought that his daughter could still have the wonderful life she was expected to live, still believed Emily could make it. Arnie believed that if she could just realize she needed to change her life somehow she would see that she had to change in order to live.

Arnie went to his mother’s house to mow the lawn. Emily always came out to extend a loving "Hey, Dad" to her father. When Arnie was about halfway done mowing the lawn, he realized Emily hadn’t greeted him. Curious as to why, he stopped the mower and walked to the door of the house. It was locked, so he peered in through the window, squinting to make out images from inside the house, to find Emily sitting in the kitchen.

Marcia spilled out in grief what Arnie, turning his head and wincing, was unable to say.

"He just peered inside, and he could see her on the floor. He unlocked the door, and when he found her, she had her arms crossed over her chest. The newspaper was spread out on the table, so we think she was reading the newspaper, and her cell phone was under her ear, so we think she was trying to call somebody," was all Marcia could get out before covering her mouth with her hand and closing her eyes.

After struggling for 20 years, the beautiful Emily Fischer, who had everything going for her, was lying on the floor, finally at peace.

"No one was with her when she died, but I’m pretty convinced she died peacefully. And she was a Christian, so we know she went to heaven," Marcia said, nodding as to assure herself, a "and that gives us a lot of comfort."
 

Arnie called 911, and police and paramedics arrived at the home where Emily Fischer had passed away Aug. 21, 2009, from a 20 year battle with anorexia.

Kimberly Westerfield, who had once been close to Emily, received a phone call and e-mail from Emily’s sister-in-law that Emily had passed away.

"My first reaction was emotion, and the inability to really understand how something like this could happen to my dear friend Emily. She just had everything going for her," Kimberly recalled.

Kimberly also mentioned the guilt she felt for not keeping in close contact at the end of Emily’s life.

"You always wonder, gosh if I wouldn’t have fallen off of her radar. You always wonder in the back of your mind if there’s something that you could’ve done," Kimberly said.

Marcia said that looking back, she can say all of things she should or shouldn’t have done, but really there’s no way to know.

Marcia even remembers asking Emily before she went to college, when she felt she was having some trouble within her spirit and asked, a "Emily, do you have the tools to go to Iowa State?" But Emily just said, a "Oh yeah, I’m fine."
 

"She just exuded that confidence, gave that perception that everything was always fine," Marcia said.

Friends, community members and even Emily’s Kappa sisters from Iowa State attended Emily’s funeral to show their support. They gathered to share memories of Emily.

Surprised and glad to see a number of Emily’s Kappa sisters at the funeral, Marcia was taken aback by a conversation.

"They said, Mrs. Fischer, a lot of us did that, practiced eating disorder behaviors, but we got over it, and we thought Emily did too."

"And that’s what we want people to know," Marcia said, a "that you start down this path, and you don’t know how far you’re going to go and how long it’s going to hold you there. You don’t know if you’re the one that’s going to get hooked."

But Marcia and Arnie believe that if an eating disorder is caught early, a full recovery can be expected.

"I think in Emily’s case we did have an early intervention, but what Emily needed was that consistent follow through, and that’s the piece that was missing in Emily’s situation," Marcia said.

Marcia said Emily always had high expectations for herself and strived to fulfill those expectations.

"She just had that genetic bent, that personality. Not that every perfectionist is going to have problems, but everything just sort of came together, I think, and in fertile soil it just created this illness," Marcia concluded.

As Marcia and Arnie look back, they try to collect the pieces that might have added up as a result of an eating disorder. Looking back to Emily’s junior and senior years of high school, Marcia thinks her daughter may have started bottling her emotions and feeling anger within herself.

"I’ve learned that when you start holding things in, it leads to depression. If you don’t feel accepted or able to express, then you’re going to turn inward."

Kimberly said that with Emily’s death came a "a real outpouring of women," and as a result their pledge class has become much closer. They are even planning a reunion at Iowa State next fall for a home football game.

a "It really opened all of our eyes," Kimberly said.

Kimberly took up a collection for Emily’s services, and 30 Kappa women donated money. With it, they purchased flowers for Emily’s funeral, but there was some left over, and that’s when Kimberly contacted Marcia and Arnie Fischer.

In doing some research, Kimberly found out about Eating Disorder Awareness Week and asked the Fischers if they would like to put the rest of the money toward the event.

"We were confident that’s where we wanted to put our monies," Marcia said.
 

"I think the Eating Disorder Awareness Event at Iowa State is a pretty big deal," Arnie said. a "This is a good event to make people aware of eating disorders, and an opportunity to share our story in order to help people."

The Fischers hope to help someone struggling with an eating disorder. They believe Emily’s story will help others.

"We want to hear from people if they want to contact us if they’re struggling or someone they love is struggling, because we can say we’ve been there, and we’re happy to talk to them," Marcia said.

Marcia is also writing Emily’s story as a way to process what happened and to a "make some sense out of something so senseless."

Marcia believes that in the end, "She was not the same person when she died as when she was in high school and college. It really took everything that she was and everything that she loved. Her family, friends, a meaningful job, service to others, recreation " it just took everything. And that’s the danger of an eating disorder, just like any other addiction, it robs you of everything that you love."

Arnie and Marcia’s advice for someone who thinks they might have an eating disorder is to contact counseling services and get some basic evaluations. Arnie believes evaluations are the best thing to do if you have any question about whether you are eating disordered. Admitting it is another huge step they feel a student needs to address.

a "It’s so critical to face it, address it and take some action," Marcia said. a "There’s no shame in asking for help."

Marcia and Arnie know that Emily would want to make sure that no one felt what she did.

"If Emily were alive today, she would say, I don’t want anyone going down the road I went down."

Monday, 08 March 2010 19:02

When Lauren Calig noticed her daughter Gillian's diminishing frame and realized she wasn't eating, the concerned mother approached the then-ninthgrader.

"She said, 'You don't know what you're talking about You're not a doctor,'" Calig recalls. But Calig recognized the signs of an eating disorder from her experience as dean of Laurel's middle school and immediately phoned Gillian's pediatrician.

The next day, Gillian was weighed and referred to a therapist and nutritionist. Diagnosed with anorexia nervosa, an eating disorder characterized by cycles of self-starvation, Gillian began several years of day and residential treatments, incorporating individual and family therapy, art therapy, cognitive behavioral therapy and other approaches.

At one point, the Shaker Heights teenager spent five months at Remuda Ranch in Arizona. Although the Caligs are Jewish, they felt the Christian facility's spiritual component and equine therapy suited Gillian, who enjoyed earlier experiences at Jewish camp. They also appreciated the good climate and the staff's willingness "to look at medications differently."

Now 18, Gillian is a college student who is doing well. But her mother knows that Gillian's relationship with food will always present challenges.

"The hardest part for me is now that she's 18,1 have very few rights,'' says Calig, currently primary learning specialist/lower school diversity ¦ coordinator at University School's Shaker campus and a strong advocate for changing Ohio's parity laws to cover eating disorders. "She has to make the decision to want to. stay with her recovery. Before, we prepared the meals for Gillian, and she had no say in it. The premise was these kids' lack of nutrition was not enabling them to think clearly"

Gillian's struggles are not unique. According to the National Eating Disorders Association (NEDA), nearly 10 million females and one million males struggle with anorexia, bulimia (recurrent binge-and-purge cycles) and binge-eating disorder. If left untreated, these conditions can lead to serious health consequences or death.

It's a topic that should concern everyone, says Dr. Mark Warren of the Cleveland Center for Eating Disorders in Beachwood.

"An eating disorder is a biological illness triggered by environment factors," he explains. "They have physical, behavioral, emotional and nutritional aspects to them and thus . are very difficult to treat in a way that addresses all the needs of those who suffer from them. They are widespread in men, women and all socioeconomic groups and are seen in every country of the world."

Although the public erroneously perceives eating disorders as exclusive to upper-middle-class white women, an increasing number of .men are seeking treatment. According to Warren; males represented about one in every 1,000 eating-disorder patients iii the 1960s, but today comprise one in every four patients.

"I don't know if they're more common in men now or if there's less of a stigma," he says. It often takes a long time for loved ones to recognize an eating disorder in men. "The most common symptom is over^xercising, and this is not always seen as an illness by others," Warren says.

"It's sometimes seen as something wonderful to be glorified, whereas starving yourself or purging - which are more common in women - are often seen and labeled more quickly as an illness."

For instance, a bulimic man may hit the gym for hours on end after overindulging in pizza. A bulimic woman will purge; Dr. Jorey Friedman Beegun is a licensed clinical psychologist at the Cleveland Center for Eating Disorders and one of 15 clinicians nationwide certified in Family Based Treatment, an empirically supported treatment for eating disorders in children and adolescents. Eating disorders are not about vanity or excessive dieting, she says.

"People don't understand why it is so hard for our patients to just eat, not understanding that these are serious psychiatric illnesses," Beegun explains. "Anorexia nervosa has the highest mortality rate of any other psychiatric disorder."

Beegun uses the Maudsley approach to treat young patients. This allows parents to "help restore their child's weight and reverse malnourishment, hand the control over eating back to the adolescent, and once the eating disorder is stabilized, encourage normal adolescent development through work on the developmental stresses as they pertain to their child."

Studies from The University of Chicago and Stanford point to a 75%90% recovery rate following treatment and at the five-year follow-up, Beegun says. "This treatment has literally saved these children's lives and has provided effective, efficient care without hospitalization for an illness for which recovery rates drop significantly based on the number of years one has struggled with the illness."

Beegun is gratified that the Jewish community is increasingly recognizing and seeking treatment for eating disorders. She has presented information to faculty and students at several day schools and local Jewish agencies.

"When we had a number of Orthodox adolescents in our partial hospitalization program at one point, one of the agencies provided our facility with a kosher microwave and paper products so (patients), could eat the food their families were providing to Eating 134 them while getting the intensive treatment they heeded," she says.

Treatment can last for years. Lauren Calig says Gillian still attends individual therapy once a week and family therapy every six weeks. That's why Calig speaks publicly about eating disorders. Familiar with the frustration of dealing with insurance companies who often transfer callers from department to department before ultimately denying claims, Calig continues to fight for eating-disorder coverage that, like alcoholism, wouldn't have a cap.

"The mortality rate for eating disorders is high, so if these kids don't get treatment, they could die," she says.