MARATHON MAN
Sidestepping the rat race, this husband and dad takes on the non-stop role of caregiver—and discovers life's true adventures
BY:ANNE HOSANSKY
Photograph by Fran Collin
As a hopeful young bridegroom, Jonathan Mosher of Mechanicsville, Virginia, never imagined his life's role would be that of—as he puts it—"care partner." Both he and Mimi, his bride, were in their early twenties and recent college grads. But, within months, their vow of "in sickness and in health" took on new meaning. Mimi began losing sight in one eye. After exhaustive tests, doctors determined there was a "70 percent chance" she had multiple sclerosis. Ultimately, the diagnosis was secondary progressive MS.
"We were devastated," Jonathan says. But they didn't fully realize how their lives would have to be arranged around her illness. One major decision was whether it would be safe to have a baby. Warned that pregnancy could be dangerous for a woman with MS, they went to the National Institutes of Health for a consultation. They were advised that, if they wanted a child, they should have one before further symptoms developed. They mutually agreed to risk it. Fortunately, Mimi had a problem-free pregnancy and a healthy son, Max, who's now 18.
Jonathan's career also has been greatly determined by Mimi's illness. To maintain her health benefits, he's remained with the Richmond Motor Vehicle Bureau for 18 years. "A job in the private sector would pay more," he notes, "but I'm not sure it would cover Mimi. The state employee's insurance is very comprehensive." He's become the Bureau's Training and Wellness Coordinator, teaching "people skills" to employees statewide, and recently won a Virginia Commissioner's Award for the charitable programs he has established and continues to create through his job. "Helping Mimi has spurred me on to help people in the community," he says.
But his vital job is that of caregiver. Since Mimi is legally blind, Jonathan serves as "her eyes," he says. "She can put a book under a magnifier, but that takes time. So I do a lot of reading and identifying for her." When they go out, he's her "previewer," alerting her as someone they know is approaching, so she won't be taken off-guard.
In addition, he does the cooking. ("Mimi never liked to cook anyway," he confides.) He's also "the major chauffeur," even though Max now has a driver's license and does some of the driving. "I'm also Mimi's ‘go-fer' around the house," he adds. "But I can't move as quickly as she can think! I have to say, ‘Wait!'"
In the 21 years since her diagnosis, Mimi's condition has deteriorated. Unable to walk, she began using a motorized scooter about 10 years ago. If she falls, she has to wait for someone to pick her up. Since the bedroom is on the second floor, Mimi uses a chair lift. Occasionally, it gets stuck and she must wait for Jonathan or Max to come home and rescue her. If she needs the bathroom during the night, she wakens Jonathan so he can carry her there. "Fortunately, he's practically a sleepwalker and doesn't remember in the morning," she says.
He boosts her self-esteem, too. "When she compares herself to able-bodied people, I tell her it's not a fair comparison. She wouldn't let anyone else compare herself that way," he says. "Or she'll feel she's not a contributor to the family. I remind her she's the house manager. And she's always here when Max comes home from school, so she's an integral part of the parenting."
Jonathan has his own emotional dragons. He freely admits to being a recovering alcoholic and, in 1991, was diagnosed with Bipolar II. "I get the lows but not so much the mania," he explains. He also confesses to struggling with feelings of anger and resentment about the family situation. "It helps to remind myself that the person isn't the disease," he says. "The definition of Mimi doesn't depend on her mobility or vision; [it's] her spirit."
This past year, Mimi's condition worsened. She's lost upper-body strength, making it difficult to remain upright. "It's been stressful," Jonathan says. Though she's blessed with an "unsinkable" attitude, she almost sank this spring when she could no longer get around with her scooter and had to resort to a motorized wheelchair. "I felt as if I were down for the count," she says. Jonathan reassures her he'll always be there for her.
They agree their struggle has brought them closer. Last autumn they renewed their vows in a simple ceremony at home. Mimi's brother, Father Paul Murdock (who had married them) officiated, with Max and some family present. "MS [is] an uninvited guest, a fourth member of the family," Jonathan says. Still, they try to have a normal married life. They play fun, competitive games of Scrabble. "We have the same sense of humor," says Mimi, who makes out the point values by putting her face close to the tiles. And they rent movies, especially foreign films. Jonathan whispered the subtitles in Mimi's ear until she told him not to talk so much! "You have to pick and choose which words, not try to read every one," he advises.
Outings are limited to inexpensive, barrier-free places like museums and bookstores. And Jonathan must accompany Mimi on bathroom trips, which originally bothered him. Now, he claims, "it isn't a big deal." Visits to friends are difficult, as Mimi has to be carried in and out. "Most of our friends have stuck by us," he says, "but some faded away. Our life is a different pace than theirs." They're also limited to places that aren't too hot, since heat increases MS symptoms. Jonathan confesses to envying co-workers who talk about going to the beach. But, Mimi reminds him, "They still have to do laundry."
Finances are a constant anxiety. Mimi gets $700 a month from Social Security Disability. Six of her "very helpful" siblings live in Virginia, while Paul is in Norwich, Connecticut. Her brother, Michael, sends money monthly. However, the wheelchair was a staggering expense. Insurance covered most of the $11,000 cost, but still left them with a $2,800 balance. They were rescued by their congregation at St. Paul's Episcopal Church in Richmond, which offered to give them the money.
Jonathan confides they now face two financial hurdles. First, Max has been accepted to Radford University, and though his parents don't want him to lose out because of Mimi's illness, they don't see how they can pay the annual $15,000 tuition, including room and board. They're applying for financial aid from multiplesources, including a National Multiple Sclerosis Society (NMSS) scholarship.
The other is finding the means to add an extension to the house, since Mimi is mainly limited to one floor and the existing ramps have to be widened to allow for the wheelchair. Mimi's sister, Simmy Murdock, even contacted the TV show Extreme Makeover: Home Edition, asking for help.
Meanwhile, they focus on what's possible. A talented artist, who paints with the aid of Zoomtext software, Mimi hopes to illustrate children's books. Jonathan helps by photographing reference subjects and posing as a model. She's created holiday cards for the NMSS, as has their "amazing" son, whose snowman card is a best-seller.
In 2001, the NMSS filmed their story for the documentary Mimi's Story, which was sent to chapters nationwide. Both Mimi and Jonathan speak at fund-raising events, where he tells audiences, "Our society is geared to acute illness where there's a beginning, middle and end. But chronic illness is like a marathon!" He adds proudly, "We're happy to share our strength—and our hope."