The Balancing Act
Rising About the Challenges of Multiple Sclerosis: A Family Story
by Alison Lake
"My first year with multiple sclerosis was terrible." Karen Modell of Rockville, Md., mother of two girls, underwent four severe episodes, or "exacerbations," in one year. The onset of MS was sudden, and her vision and motor control declined severely. Karen was in and out of the hospital for months. Her husband and two young girls had to adapt to the sudden change. Her husband managed both the household and the couple's law practice while caring for Karen and the girls. That was seven years ago. Today, Karen has come a long way. She accepts the disease and cheerfully lives her life to its fullest. She encourages others with MS to do the same through her successful nonprofit organization, the Montgomery Multiple Sclerosis Center.
MS is a chronic and progressive illness of the central nervous system. Twice as many women as men develop MS, and around 200 cases are diagnosed each week around the country. No one knows exactly why MS occurs; the disease is neither hereditary or contagious. Yet, as Karen says, "When MS hits a person, it hits the whole family."
Karen first realized she had MS in 1997. When planning her oldest daughter's fourth birthday party, an elaborate event and the first birthday party where Karen "went all out," she had no idea she'd finish the preparations from a hospital bed. The week of the party, Karen and her husband learned that Karen was probably afflicted with MS. She told the doctors, "I can't miss my daughter's party." Confined to the hospital for almost a week, Karen made the most of the time. "I just sat there in my hospital bed, gluing and cutting. I got everything done for the party, and they sent me home." With an IV in her arm and severely impaired vision, she managed to enjoy the party while her sister and in-laws ran the event. "My daughter was so involved in the party, she did fine."
"I Have My Life Back"
Then, silver medalist, downhill skier and MS patient Jimmie Heuga profoundly changed Karen's outlook on life. Karen attended a conference in Vail, and had the opportunity to ski for the first time in her life. Billy Kidd, another famous skier, encouraged her and demonstrated at the conference that living a full life with MS is possible. After a day of nervous indecision, Karen hit the slopes with an adaptive sled. Now, she skis once a year with her family and loves it. The conference opened her eyes to the possibilities life could bring to a person with MS, and she became determined to make a difference in her own community. "I came home and said, 'I have my life back.' I owe my life to the Heuga Center." Karen created the Montgomery Multiple Sclerosis Center to serve her family and dozens of others affected by MS in the metropolitan area.
Karen knew from her own experience that children of parents with MS sorely need outside support. She wanted her own girls to have a social and support network and a time and place to discuss their feelings about the situation. Currently the Center offers four different support groups organized by age. Younger children engage in play therapy and, as they get older, move into talk therapy. A licensed clinical social worker facilitates each group. The Center also offers exercise classes, education seminars and support groups for patients and caregivers. All membership is confidential to protect patients.
Programs are held at the Temple Beth Ami in Rockville, close to Karen's house. The nonprofit's motto is, "Living life to its fullest." "My true goal in founding this Center is to show those affected by MS that a cure would be wonderful, but we have MS now, and we need to make the most of our lives now and not live for the future."
Reinventing the Wheel
Karen and her husband are masters of creative household management. Most of the time, she works from her home office, a convenience for the days she doesn't drive or feel up to going out. In fact, it occurred to Karen that she could reach more people in her same situation by offering teleconferences from the Center for people who lived far away or weren't interested in driving to the Center. Some lectures and support groups offer this option, providing yet another outlet for patients.
"My kids are athletic and creative and keep me busy." Karen and her husband have a workable arrangement to cover all the girls' activities and needs. Karen participates whenever possible, and her husband takes over with other activities like bike riding. The arrangement was an adjustment at first and still creates discussions in the family. "My youngest still asks, 'Why can't you do that, Mommy?' I have to explain to her that it's not always safe for me to do certain things." Karen describes the obstacles of working in the kitchen. Using knives and working near the stove is not an option for her. There is always the chance she'll hurt herself, and at times her youngest becomes impatient, as children do.
"My little one is tuning in to a lot more now. She asks, 'Why are you always so tired?'" In general, though, the girls have grown up as witnesses to Karen's journey and understand what is going on. Her oldest handles Karen's MS with great maturity. The girls are matter-of-fact when Karen receives regular injections of medicine now, but were fascinated and willing observers at first. Because the girls always showed interest in the injections and weren't upset by the process, Karen and her husband allowed them to watch this daily routine "because it was important to them."
In fact, "a main impetus for the Center was to have a support network for my kids. What happens is parents with MS don't realize the pain and fears their kids are experiencing. Your kids are terrified, thinking, 'Am I going to get this? Is Mommy (or Daddy) going to die?' Young kids don't understand, but they are very perceptive and it helps them to have a medium."
The Energizer Bunny
Throw a chronic illness like MS into the mix of life's usual stresses, and daily life can be a big challenge. Karen may be unusual. "I equate myself with the Energizer Bunny, and I don't let much get me down." She is very dedicated to taking care of herself. "I exercise and listen to books on tape incessantly. Exercise is one of the very best things you can do with MS." Karen uses a stationary bike and a special cassette player that hooks to her clothing. She qualified for special needs status and is able to order free tapes online. "It's an awesome service." The combination of exercise and listening to books is a positive experience. "Everyone should do this!"
Listening to books brings other benefits to Karen. Sometimes MS impairs memory function. Karen listens to sections of books several times to imprint them in her brain. She even keeps a journal of books and authors and writes up short blurbs for each book she has read. Also, traditional reading is a chore for her because, like many MS patients, she has lost her ability to scan a page when reading. Large print in columns is easier for her, but the typical book or magazine is more trouble than pleasure.
As with her nonprofit organization, Karen has turned many difficulties into productive experiences. "My older daughter was learning all about the body in her fifth grade class, and the teacher asked me to come in and teach the class about the central nervous system." Karen ended up teaching all three fifth grade rooms, and the teacher turned her lesson and handouts into transparencies and tested the children the next day. The children are accustomed to seeing her ride around the school in her scooter.
How has Karen managed to rise above her own challenges? "It's not a fatal illness. It hit me young, with little teeny kids, and I was not about to stop living." Karen, her husband and daughters all go skiing together once a year. "My daughter asks me, 'Mom, do you have any idea how ridiculous you look?' I say, 'Do you see that long line for the lift over there? I get to go to the front of that line!'"
Montgomery Multiple Sclerosis Center, Inc.
Programs held at:
Temple Beth Ami
14330 Travilah Rd.
The Heuga Center