Parenting With Multiple Sclerosis
Here's one from The Obvious Files: Parenthood is hard. But for some mothers and fathers, the challenges are more relentless. Single parents fall into this category. So do moms and dads whose children have special needs. And so do a group we don't hear much about: parents who themselves have a disability. There are more than 4 million of them, according to research conducted at University of California, San Francisco.
Verena Cristofaro-Frydberg, 36, a mother of two children, ages 5 and 6, was diagnosed at age 21 with multiple sclerosis (MS). Most people with MS experience their first symptoms between the ages of 20 and 40. The cause of MS is unknown, but it drives the immune system to damage parts of the brain and spinal cord and interfere with nerve signals between the brain and different parts of the body. As a result, those with MS may experience vision problems, walking difficulties, muscle stiffness, dizziness, numbness, bladder and bowel problems, and pain. Many with MS go undiagnosed, so its prevalence is difficult to pinpoint. According to the National MS Society, it's believed to affect more than 400,000 people in the U.S.
Verena, who lives in New City, New York, has relapsing-remitting MS, the most common form of the disease. Her symptoms were almost nonexistent until her first pregnancy, with her daughter, Olivia, in 2007. She experienced pins and needles in the soles of her feet and at one point couldn't walk because her ankle kept giving out. During delivery, after an epidural, her right leg went completely numb, but then it returned to normal. In 2009, when she was in labor with her son, Stephen, an epidural again left her with no sensation -- this time permanently.
Her MS symptoms have since worsened, but she tries hard to focus on what she can do. Blending her background in the entertainment, fashion, and beauty industries, Verena started a nonprofit called Makeover Your MS, dedicated to empowering women through programs that build self-esteem and enhance their quality of life. "I don't let things get me down," explains Verena, who is recently divorced. "Sometimes I have a 'woe-is-me' moment, but then I'm like, 'Hey. Keep it moving.'" She graciously allowed me to join her on what passes as a "typical" day.
Verena wakes up and reaches for her pill organizer. She also stretches and uses a muscle massager to warm up her joints before she gets up. "I can't just pop out of bed," she says. What happens if one of her children calls out to her during the night? "It takes me a while to get there because I have to be careful not to fall," she explains.
The family's au pair starts her workday and enters Verena's bright, spacious bedroom. Live-in child care is a must: "If my son runs out the door, I physically can't chase him," she says. "He once climbed out the window -- thank God he was in the basement. But that's why I want a one-level house."
Conserving energy and movement is a theme in Verena's life. It's the reason she has toothbrushes, toothpaste, and flossers in each of the three bathrooms in her home. And why she makes her kids' beds with three layers of mattress pads and sheets. "This way, if a kid's throwing up or wets the bed, I'm not remaking it -- I just have to pull off a sheet and a mattress pad."
She recalls when her symptoms started taking over her life. It was when her mother had a stroke, after Stephen was born. "I was flying back and forth to Michigan to see her, I had a baby and a 1-year-old, and I was so stressed." Around that time, Verena lost all core strength.
Her divorce has been another grueling experience, but she thinks of the stress as a wake-up call to focus on herself and not let her symptoms worsen. She started going to Pilates two or three times a week. "At first, my foot was so stiff that I couldn't move it. It was like a brick," she says. Pause. "When I was younger I was so athletic -- cheerleading, everything ... I used to be so fast." Her voice trails off.
We pile into the car. Verena stocks it with the items she uses all day long, including baby wipes, straws (hand weakness can make it hard to lift a cup or a bottle), a roll of plastic diaper garbage bags to keep the car tidy, and a huge container of nuts.
Arriving at Olivia and Stephen's school, Verena asks her au pair to bring the kids inside, because it takes too long for her to get to the classrooms. Today Stephen will start a new afternoon program, where he'll get services for the problems he's had lately, due in large part to his parents' divorce. "He's getting help for his attention issues," Verena explains. "The emotional stuff has gotten better, now that all the transitions at home have stopped for the moment."
We're at Dunkin' Donuts. "I use a drive-through wherever I can," Verena says. "Me trying to walk with a cup of coffee is not pretty."
We slowly navigate the narrow aisles at Back to Earth, a small natural-foods store; Verena makes her selections. She orders as much produce online as she can from Peapod, but she also relies on premade and packaged foods from this local market. At the checkout, Verena watches the cashier pack the bags. Before loading them into her cart, she removes a few of the items from the first bag. "Too heavy?" the cashier asks, perhaps unaware of Verena's limitations. "A little bit," Verena admits. "Okay, I'll take some stuff out," the cashier replies kindly. Verena handles one bag while the cashier takes care of the other.
Leaving the store, I wonder whether her children talk about her condition. "They'll ask, 'Mommy, when's your leg going to get better?' 'When will you be able to run?'" says Verena. "Sometimes they get sad, but they know Mommy has to go slow."
Whereas the average person has a 1 in 750 chance of developing MS, Olivia's and Stephen's risk is 1 in 40. "It really scares me," Verena admits. "Sometimes my son wakes up saying he has 'freezing feet' and I get so frightened," Verena says, because numbness in her own feet had signaled the beginning of her own decline. "But there's nothing I can do to prevent my children from getting MS. I can't give them medicine or increase certain vitamins -- we don't know if any of that works. And worrying doesn't change the future; all it does is ruin the present."
Verena has a doctor's appointment. She opens the trunk of her car to get her cane. "I don't want to use it -- ever -- but it lets people know something's wrong." What changed her mind was hearing the story about a friend with MS who attended a professional event without her cane; people assumed from the awkward way she was walking that she was drunk.
So Verena uses her cane, albeit as infrequently as possible. "It's annoying. I have to use it on my stronger side, but then I need to hold my bag on my weaker side, even though I can't really grip it. I need one more hand." To free her hand to hold a cane, she wears a wristlet that contains cash, credit cards, her license, and keys.
As she waits to see the doctor, she recounts her medications. Daily, she takes pills to help relieve muscle spasms, to aid in coordination, to help manage anxiety in the wake of her divorce, and to counteract the constipation caused by all of the drugs. Once a month, she gets an IV infusion of a medication that can slow the worsening of symptoms and decrease the number of relapses she experiences.
Because she's "perpetually exhausted," she also takes Adderall, most often used by people with ADHD, to combat her fatigue. This begs the question: How on earth did she handle new motherhood? Two words: sleep training. Miraculously, both of her children took to it beautifully; Stephen was sleeping for 12 hours at 6 weeks. "They never cried in their crib. They learned how to entertain themselves."
But when Olivia was 16 months old, Verena realized something wasn't quite right; her daughter had a speech delay and problems transitioning, among other issues. Olivia has since been diagnosed with a mild form of autism spectrum disorder as well as ADHD. "We have a very structured day for her," Verena explains. "Everything has to come with a two-minute warning."
It's time for Verena's private Pilates session, in lieu of traditional physical therapy. "My hand's feeling jammed up," Verena tells her instructor, Shantih. As she struggles during one series of movements, she mutters, "I'm not a good student." Shantih shakes her head: "Verena is a great student. She's so hard on herself."
We're in the parking lot of the children's school, for a meeting about Olivia. We wait for an elderly man heading to a handicapped parking spot to drive away. There's only one such spot, and the lot is coated with ice and filled with mountains of shoveled snow. "If it's really cold, I can't bend my knee. I've been stuck sitting in the car for 15 minutes with my leg out the door, just waiting to bend it," she says. "I get dirty looks if I don't get out of the car. Someone once came up and said, 'That's nice: Teach your kids to take the handicapped spot' -- and then he saw me get my cane."
Finally, we're parked. Verena walks to the building about 50 feet away, signs in, and climbs the two flights of stairs to the principal's office. She chooses the stairs because the elevator is much farther away. "A lot of places that are handicapped-accessible are good for wheelchairs but not for people who have trouble walking," she notes. "This is why I get fatigued -- it takes so long to do everything."
Her meeting ends, and her children are dismissed early. "Mommy!" Olivia calls out joyfully, running down the hall, all bundled up, as Stephen follows behind. Carefully walking down the hallway with her cane, Verena says softly, "I'm going to fall." Her right side topples into the wall, and she slides down, landing on the floor. "Mommy! Are you okay?" Olivia asks, frightened. Stephen is quiet as two teachers and I help Verena get to her knees. "I'm fine," she insists, slowly standing. "I tripped over my foot."
"You don't want to use a walker?" asks one of the teachers, gently.
"And are you sure you want to take the stairs instead of the elevator?" the other teacher wonders.
"It's actually easier for me to go down the stairs than to walk to the elevator," says Verena. "It's too far."
Once in the car, she shakes her head. "They want to help. They just don't understand that I actually choose to take the stairs, and will for as long as I am able."
Back at the house, a timer sounds. "iPads off!" Verena calls. Olivia goes over her schoolwork at the dining-room table, where Verena finally eats the salad she bought at Back to Earth for lunch.
Verena leaves for a divorce-mediation meeting at her attorney's office. It takes three hours, much longer than expected.
The au pair has put the children to bed; Verena gives good-night kisses and heads to her room for the night.
Verena and I speak the following week. She tells me went to a friend's wedding, where she served as the makeup artist. Because it became so difficult to walk around the resort, she rented a wheelchair. "It made things so much easier," she reports, though it wasn't exactly fun when a guest asked if she was the mother of the bride. "The bride is my age! But people sometimes assume that if you're disabled, you're old. You have to have a sense of humor about it."
She also tries to have compassion. "I remember seeing people riding their scooters in the mall, but then arriving at a store and walking in. I'd think, 'They are so lazy. They can walk! They should walk,'" Verena recalls. "Now I understand. They ride a scooter because by the time they get where they're going, they're exhausted. It takes a lot of mental effort too. You're thinking, 'Are people looking at me?' 'Oh my God, I'm going to fall.' It just proves you have no idea what somebody's going through. You really don't know."
How to Help a Parents With a Disability
Ask what you can do, suggests psychologist Rosalind Kalb, Ph.D., vice president of clinical care for the National MS Society. A straightforward "I hope you'll let me know if there's any way I can help you" is a good place to start; from there you can offer more specific assistance. Dr. Kalb recommends offers that take an item off a parent's to-do list, such as:
- "I'm going to the store. Can I grab a few things for you?"
- "I love having kids over because it helps me out. Want me to take the children for a bit so you can try to squeeze in a quick nap?"
- "I know we're all supposed to help at the book fair. If you're not up to it, would you like me to take your shift?"
- "I'm making casseroles this weekend. Is it okay for me to drop one off to save you a little work?"