Meredith Vieira misses Lenny. Sitting with her husband, author Richard M. Cohen, on the deck of the couple's airy vacation cottage on Cape Cod, she recalls the crowd that collected outside the plate glass windows of NBC's Today show studio while she worked: tourists, gawkers, publicity seekers, and devoted fans such as the uni-monikered Lenny, a military retiree who stands a daily vigil in the Rockefeller Center throng.
"I had a lot of respect for those people," says Vieira, who left Today in June after nearly five years as cohost. The crowd, which begins gathering before dawn in all weather, was a humbling reminder of the 60-year-old show's place in American life, she says. When she stayed after to shake hands with crowd members — something she did every day — "a lot of people would say, 'We wake up with you every morning,' " she recalls.
"It is tough," interjects Cohen with a laugh. "I mean, I have to do that!"
And so Vieira's earnest reflection on her role in a TV tradition makes way for Cohen's needling wit — the natural order with these two. Married since 1986 and the parents of three young adults, the pair approach their life together with a levity that belies the grave challenges they've faced and continue to face.
On this bright morning, the deck looks out on a placid cove scattered with reeds, but Cohen can't see the vista. Instead, he sees only an impressionistic blur. Now 63, Cohen was diagnosed at 25 with multiple sclerosis, a nerve-destroying condition that is gradually stealing his eyesight, balance, and strength. He is legally blind due to MS's assault on his optic nerves, and his right hand is so weak that he can't even hold a heavy book — the arm would buckle. With a tangle of sandy-brown hair and a gold stud in one earlobe, Cohen looks almost boyish when seated. Upon standing, though, he gains decades: He walks deliberately, with a cane and a decided limp, and rarely for longer than one city block. "My life has been a continuous series of what I can't do anymore," he says matter-of-factly. In contrast to his wife's famously velvety voice, Cohen's voice has a scratchy warble to it — another effect of MS.
For years, when poor eyesight was one of his few symptoms, Cohen hid his condition in order to protect his job as a TV-news producer. He told Vieira his secret during dinner on their second date — if his illness was going to scare her off, he has joked, "Why waste money on dessert?" She responded with empathy and fatalism. There's no point worrying about an unknown future, she thought: "The future could be a bus hitting us tomorrow." While they were dating and both working at CBS News, Vieira remembers, "I would get people all the time asking, 'Why would you go out? He's such a snob. I'll walk by him, and he never acknowledges me.' I wanted to say, 'My God, he can't see you.' "
Next: Life after Today. >>
By the late 1980s, Cohen acknowledged his worsening disease to friends and coworkers. Some celebrity journalists who got wind of the matter saw a ready-made sob story, painting Vieira as the long-suffering nursemaid to her sickly husband — a "Secret Family Tragedy," to quote one tabloid. In his best-selling 2004 memoir, Blindsided, Cohen calls this story line "Meredith the martyr and Richard the wretched."
So when Vieira, 57, left Today, she pointedly rejected reports that she was leaving to become a full-time caregiver. "There's so much speculation in the press recently [about] 'poor Meredith with her invalid husband,' and I want to set the record straight," she said at the time. "My husband, Richard, is in good health, and that's part of the reason I want to leave right now.… I want to be there with him, and I want to have fun."
True, Cohen is probably feeling as well as he ever will, given that doctors don't yet know how to halt the progression of his MS, let alone repair the nerve damage it has caused. But in the face of his advancing disease, how can Vieira not see herself as a full-time caregiver? The family has no aide to assist Cohen with his daily routine, in which buttoning a shirt can take as long as 40 minutes. ("Having somebody there would drive him crazy, I think," says Vieira. "He hates hovering.") And the youngest of their three children — each of whom grew more able to help their father as his disease progressed — left for college this past September.
The answer, it seems, is through force of will. Both Cohen and Vieira long ago decided that, while chronic illness might affect their life together, it wouldn't define that life. Now, as Vieira starts a part-time gig as a correspondent for the new NBC newsmagazine Rock Center with Brian Williams — and continues her 10th year moonlighting as host of the syndicated game show Who Wants to Be a Millionaire — they are adjusting to Cohen's increasingly uncooperative body as they have adjusted all along: with a mix of realism and denial.
Richard Cohen has an office in the couple's Tuscan-style home in Irvington, New York, but every day he can manage the trip, he rides the commuter train and subway to his writing studio on Manhattan's Upper West Side. The family could certainly afford a car service, but Cohen prefers normalcy, despite his difficulty seeing and walking. One friend says he can hear "a certain pride" in Cohen's voice when he calls from public transit.
In his cream-walled studio overlooking the Hudson River, Cohen writes books and columns on chronic illness, including a column for AARP The Magazine's website. His potential audience is vast and growing. An estimated 133 million Americans have at least one chronic illness, defined as a long-term disease that is usually incurable. And that number will surely climb as the population ages. "This isn't about 'them,' "Cohen says. "It's about 'us.' "
Cohen's own health history includes not only MS but two bouts with colon cancer, in 1999 and 2000, which required invasive, lifesaving surgery. But he says the emotional experience of living with a long-term condition is much the same for anyone who has one, whether it's heart disease, diabetes, or another ongoing ailment. "There are so many different diseases, and they do different things to your body," he says. "But the coping issues that go with these illnesses are remarkably similar." Via personal stories and interviews with other patient-advocates, Cohen writes about how a chronic disease can challenge one's faith in the future as well as one's sense of self-worth. He writes about how to keep pain and frustration from poisoning relationships. "People don't want me to tell them to take this cream or that pill," he says. "People want to know, 'How did you do it?' "
Cohen says his favorite coping mechanism was always denial — not necessarily of his present condition but of his future. "I hear stories about people who want to go out and buy caskets. They dig their graves prematurely," he says. But there's no point in losing a good today over the chance of a bad tomorrow. "I deny the certainty of possible outcomes," he says. "It really frees you up." Accordingly, friends say, Cohen has a hair-raising habit of crossing the street by forging straight into traffic.
But that bravado has sometimes had a downside for Cohen's family, especially early on, he admits. Their eldest child, son Ben, is now 22, but once when he was 3 years old, Cohen's creeping lack of coordination led to a terrifying moment when he accidentally bumped Ben into the gap between a standing commuter train and the station platform, sending the boy tumbling onto the tracks. Though Cohen was able to rescue the child, the chill of fear stayed with him, he wrote in Blindsided: "I do not travel anywhere in the city with a youngster in tow without replaying the videotape of that moment."
Jerome Groopman, M.D., a professor at Harvard Medical School and writer for The New Yorker, says his friend Cohen's work has value even for those not affected by chronic illness…yet. "All of us, one day, will be patients," says Groopman. "These stories tell us that, yes, there is a potential for loss and difficulty, but on the other hand, there's also the potential to prevail."
Cohen prizes and nourishes a few close friendships, say those who know him well. "Of all my friends, more so than I, he's the one who puts the time and effort into friendship," says Katie Doucette, an executive coach who first met Cohen when they worked together on a 1970 New York congressional campaign. "He is the one I can count on for a call on Saturday morning to check in." Cohen's friends, in return, prize his cracked sense of humor. CBS radio and TV news host Charles Osgood recalls Cohen's reaction when a viewer threatened to kill Osgood if the newsman and amateur poet continued to recite his own homey verse on the air. CBS hired a guard for Osgood; Cohen was less concerned. "Rich said that if, indeed, someone like that did shoot me, he would never be convicted," Osgood recalls merrily, " because it'd be a justifiable homicide."
Adapting to a chronic illness is a lifelong process, experts say. First, patients and families must deal with the shock and logistics of a new diagnosis, whether that means diet changes and medication for someone with diabetes or driving restrictions for someone with epilepsy.
Then, after an initial adjustment period, families facing chronic illness must learn to function without the disease's monopolizing everyone's attention. "Chronic illness has a tendency to have an insidious effect on all family dynamics," says Barry J. Jacobs, Psy.D., author of The Emotional Survival Guide for Caregivers. "If a family isn't careful, the disease becomes their central organizing force."
At first Cohen and Vieira may have taken this caution to an extreme: They didn't discuss Cohen's condition with their children at all until Ben was about 7, Gabriel was 5, and Lily was 3. "We figured, oh, they're so small, they don't need to know this," Vieira says. But then one night all three children saw their father plummet backward down the stairs and land on his head. They were terrified. Later that night, Ben asked his mother for answers, and she gave them. "I realized kids are intuitive; they are sensitive," she says. "He didn't know what it was, but he knew something wasn't right." From then on, MS was something the family discussed openly, though not obsessively. The parents made sure that conversation around their dinner table centered on everybody's everyday activities: Ben's soccer, Gabe's baseball, Lily's drama, and the spirited debates that naturally arose in a household of proudly stubborn individualists. Their baseball fandom tells the tale: Vieira roots for the Red Sox; Cohen, the Yankees; Ben, the Orioles; and Gabe, the Mets. Lily, now 18 — and agnostic on baseball — recalls her childhood as "completely normal." Multiple sclerosis "definitely affects everybody in the family; it affects what you are able to do, how quickly you can do something," she adds. "But everybody has something in their family that's unique."
Adapting to a chronic illness doesn't happen once, though. It must happen over and over. "If there's anything I've learned," says Cohen, "it's that progressive diseases progress." Some forms of MS include long periods of remission, when the patient's symptoms can diminish or even disappear. But with Cohen's form, called "secondary progressive," nerve damage accumulates, leading to increasing disability. Many other chronic illnesses — chronic obstructive pulmonary disease, for example — have this same progressive trait. Each time you notice a new loss of function, Cohen says, "you just know on every level that it's a one-way trip. You're never going to cross back over." And just as the patient must adjust to his or her new limitations, so must the family — while also adjusting to the changing needs of other family members, including children as they grow.
The most striking recent example of this in the family's life is Cohen's grudging use of a wheelchair in some situations. Cohen's father and paternal grandmother both had MS, and each used a wheelchair at the end of their lives. To Cohen, the device signals an irreversible step toward the grave. But with the progression of his disease, he has grown more resigned. "He said to me a million times, 'I thought I would beat this. I thought I would be the one,' " Vieira says sadly. "He's feeling like he's not the one." At the recent wedding of Cohen's niece, where long hotel corridors made walking impossible for Cohen, he reluctantly used a wheelchair to get around. "He didn't want to do it," Vieira remembers. "He didn't want to get in that chair."
As the last child still at home, Lily knew her father's limitations, and she wasn't surprised to see him in a wheelchair. But for Ben and Gabe, who had been away at college, the sight of their father in the chair was a shock. "He'd always said he'd go as long as possible without using one," recalls Gabe, 20. "Often my dad is very good at hiding his illness, and to see him like that in public was a big change."
At the end of the wedding, Cohen went upstairs, while Vieira stayed behind. "All the kids were dancing," she remembers. "Gabe is such a sweet boy. He asked me to dance, and while we were dancing, he started crying. I just knew that he was scared. They have those moments. Those are the transitional moments that we're having, too."
In some ways the course of a chronic illness parallels the indignities of aging. Most of us, if we live long enough, will realize that we've driven our last car or scaled our last fence. But with chronic disease, the process is accelerated and tinged with cruelty. "As we get older, things are happening in the right time. We tend to be dealing with them with our peers," says Rosalind Kalb, Ph.D., vice president of the Professional Resource Center at the National Multiple Sclerosis Society. "For a younger person with MS, it feels like a robbery, and it's unfair."
Next: Trying everything. >>
Anger is a natural reaction, if sometimes an irrational one. "People feel oddly responsible for their illnesses," says Cohen. "It makes no sense, but I sometimes blame myself because I'm sick." Expressing that anger is one way he copes. But he's careful these days to avoid lashing out at others. It wasn't always that way. Particularly during recuperation from cancer surgery in 2000, Cohen's temper threatened to break the family apart. "He began to isolate himself," Vieira told Charlie Rose in a 2004 interview. "One minute he would be quiet, and the next minute he would blow up." She decided to call Cohen on his behavior. "After cutting him a lot of slack, I thought, 'Now you are going after everything that I care about, and I'm going to fight back. [I told him] you're not in this alone. We're all in this boat, and it's really scary, and you are rocking it even more.'… As selfish as I felt at the moment of saying it — because he is the one that's suffering — I think it was the right thing to do in order to help heal us as a family."
Even as MS limits him, Cohen leavens his anger with humor. Says Vieira: "He has very bad days. He's so funny; he'll say, 'I'm in control. I hate my life, but I'm in control.' It's good that he vents. He's having a shitty day, and what is he going to do, pretend that he's not? But then he'll soldier on."
Friend Doucette says Cohen handles his illness the way he handles the rest of his life. "He focuses on what he can control, and that's where he puts his attention," she says. Medically, that means trying every promising treatment, even though none have been shown to help his form of MS. Along with interferon and other mainstream drugs, Cohen has tried experimental treatments such as chemotherapy, as well as alternative treatments including low-intensity laser therapy. "I don't believe in any of this stuff," he says. "But I do it because I don't want to ever look back and regret that I didn't try something. Or try everything."
Doucette adds that Cohen's attitude will stand him in good stead as he ages. "I'm Richard's age, and all of our friends are having something to deal with," she says. "How we approach life is going to determine how we all manage aging, whether we have debilitating conditions or not."
Last June wasn't the first time Meredith Vieira gave up a plum job to make time for her family. In 1991 her career became an early flashpoint in the mommy wars when she left her reporting gig at 60 Minutes rather than work full-time after Gabe's birth. Some feminists accused Vieira of setting back the cause of working mothers. At one party, she recalls, "this woman cornered me and said, 'How can you do that? You are the face of having it all.' "
Sitting curled in a barber's chair in her modest Millionaire dressing room, Vieira has the casual poise of a cat. She has just finished a day's worth of taping — a week's worth of quiz shows — and has swapped her purple skirt suit and black spike-heeled pumps for blue jeans, brown buckle clogs, and a Harvard hoodie so ratty it's about to disintegrate: her signature look, friends say.
For Vieira, the decision to leave 60 Minutes was never about trailblazing, but about prioritizing. "It was about our particular family and our needs," she says. "The rest kind of happened around me." Still, her choice is now largely seen as a step forward for working mothers, not a step back: It helped highlight the need for more flexible, parent-friendly workplaces. And today, with her departure from daily news to a less hectic schedule, Vieira may once again be unwittingly blazing a trail for modern families, more and more of whom are struggling to incorporate chronic illness into happy family lives.
Calling in reinforcements, when necessary, is key to her plan. Admitting the need for help can be difficult for some caregivers, Vieira says: "They are embarrassed. They don't want to put people out." But she doesn't mind asking. Sometimes when Cohen falls down at home, he can't get up by himself — nor, at 5 foot 3 1/2, can Vieira lift him. "We had this game where I would drag him, sort of like [our dog] Jasper drags the cat. We'd laugh, because what are you going to do?" When there were teenage children at home, Vieira had helpers on hand, but now she'll call on friends, she says. "People want to help, so when we've needed friends in times of any crisis, we ask. And I think it's really important for care givers not to feel that it's all on you at any given time, because it's not."
Friends and coworkers say Vieira fosters a sense of teamwork that makes you want to help her. "Meredith likes to be part of an ensemble. She rises to her best in that setting," says Matt Lauer, who was her Today cohost. "I can't tell you the number of times I'd go out to an interview, come back to my BlackBerry, and the first message would be a text from Meredith saying, 'Fabulous job today.' It's very easy in this job to develop tunnel vision: 'What do I have to do today?' Meredith opened up that frame of reference to, 'What are we doing?' That's contagious."
And Vieira's sense of connection extends outward into the world. "She will kiss all her fans," says comedian Joy Behar, a friend since their days on ABC's The View, where Vieira acted as moderator for nine years. "She kisses everybody, kisses strangers," Behar says. "I always say that the germs are going to go all over the place, but she doesn't care. She's just so affectionate."
After leaving Today, Vieira took last summer off. Ben was graduating from Stanford and taking a finance job in Shanghai, and Lily was graduating from high school. (Gabe majors in journalism at Northwestern University, where Lily recently enrolled.) Vieira didn't want to miss what might be the family's last summer together.
Next: Vieira's new job. >>
Without the daily grind of morning news, which had her — and, therefore, Cohen — waking every weekday morning at 2:30 a.m., the couple were able to spend time with their kids at the Cape Cod cottage, which they bought because it's next door to one that Cohen's mother owns. Cohen and Vieira also traveled to China with Ben to help him move into his new apartment.
And Vieira contemplated leaving television completely. While at the beach, she says, "I thought I'd have a eureka moment. I really did. I thought I'd suddenly go, 'Oh, I know what I want to be!' And I didn't. I didn't come close." So she signed another yearlong contract with NBC, giving her time to ponder her next move. "I'm great at procrastinating," she jokes.
The job calls for Vieira to report four news pieces within the year, and she'll also cover the 2012 Olympics for the network. Along with Millionaire and a film production company she owns, she'll be busy, but she also looks forward to having more time to travel with her husband. Vieira's childhood friend, author Priscilla Warner, finds the plan "romantic." "How many people our age would say, 'I'm going to leave and spend a lot of time with my spouse'?" she asks. "You don't give up a very glamorous, stimulating, exciting job to spend time with a spouse unless you have a glamorous, stimulating, exciting spouse. They both look at each other that way."
When Cohen and Vieira married, they both knew they wanted children. "It came close to our reason for being together," Cohen has written. As a third-generation MS patient, Cohen worried he might pass the poorly understood disease to his children, but doctors at the time assured him that MS was not hereditary. Today, that thinking has changed; an international consortium of researchers recently identified 57 genes thought to play a role in MS (environment is also believed to contribute). Still, while children of MS patients do have a higher risk of developing the disease, only about 3.5 percent ever do. So far, Cohen's kids are unaffected.
With one child launched now and the other two in countdown mode, the couple seem to have done admirably well as parents. All three kids are gracious and self-possessed, as well as quick and clever. And although no one in the family considers Cohen's illness a blessing, all say the experience of growing up around chronic illness has helped the children mature and develop a sense of empathy.
"It poses a challenge every day, but in ways, it has made us stronger," says Gabe. Learning to move at his father's pace and look out for obstacles, for example, "allows us to be more patient."
The couple put no pressure on the children to choose specific careers, says Ben, who works at a private equity firm but has an eye on running for office someday. His parents would be pleased if his passion led him into rewarding work, even if it was low paying, he says, though "if I said, 'I want to golf every day for the rest of my life and I don't want to do anything with it,' there'd be a moment of silence, and then my mother would hit me."
Having an empty nest is a big adjustment for the couple, the family agrees. Joked Lily shortly before she left to join Gabe at Northwestern: "They keep saying they're going to come to Chicago every week and visit us, which I'm hoping is an exaggeration." But Cohen and Vieira seem to be enjoying the transition to couplehood and are making a point of doing as much as they can together, while they can, in a life that holds no guarantees for anyone.
One clear summer day, Vieira drives Cohen and a reporter into the Cape Cod town of Wellfleet for a short tour that includes a visit to its new arts center in a restored church, Preservation Hall. The family has donated funds for an elevator in the two-story building, in honor of Cohen's parents.
Cohen wears blue jeans, a T-shirt bearing an ivory-billed woodpecker, and an electronic bracelike contraption that stimulates a nerve in his calf to help him walk without tripping. "It's a very useful device," he says. "It ought to be better known than it is."
Alighting from the passenger seat of the family's worn gray minivan, Cohen collects his cane, gains his balance, and begins to navigate toward the crosswalk that leads to the hall. Vieira walks alongside. It's a busy day, and there's plenty of traffic: The swoosh of cars passing nearly drowns out the sound of birds chittering in the trees.
At the curb, Cohen stops, then leans as if to start crossing. Vieira silently slips her hand onto her husband's, and they wait.
Features editor Margaret Guroff profiled Dr. Mehmet Oz in the May – June 2010 issue.