“You don’t give up a very glamorous, stimulating, exciting job to spend time with a spouse unless
says one friend. “They both look
at each other that way.”
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 situa-
tions. 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 sister, 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 limi-
tations, 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 hap-
pening 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.”
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 my-
self because I’m sick.” Expressing that anger is one way he
copes. But he’s careful these days to (CONTINUED ON PAGE 56)
