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."
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