Kelly and Khoren’s wedding in 2010.
by Kelly Nieuwejaar
I really don’t like being labeled my husband’s
“caretaker.” Yes, I do things I normally wouldn’t
have to do because of his multiple sclerosis. And
I suppose I do take care of things. I handle the
grocery shopping (which I detest), the lawn
mowing, the snow shoveling and other tasks, along
with working full time at an advertising agency.
And yes, sometimes I get upset (at him, at me, at
MS) and feel overwhelmed. But what I want to
be called is my husband’s friend, his wife. To me,
being deemed a caretaker takes the fact that we
have a relationship—a marriage—away from us.
Plus, it defines him based solely on his disease. I
refuse to give MS that kind of power. My husband
isn’t helpless, and he enriches my life more than I
can explain. I honestly couldn’t handle MS with
the same level of grace that he’s shown.
COURTESY OF KELLY NIEUWEJAAR
he doesn’t because worrying won’t make anything
better. I truly believe that he’s not suppressing any
emotions that would come out in some dark, toxic
way down the line. Plus, he says it so matter-of-factly.
If you knew my husband, you’d believe him, too.
My husband, Khoren, is 37. He was diagnosed
with MS at 26, when he suddenly went blind in
his left eye for two weeks. Today, he has secondary-progressive MS. He uses a cane. He can’t walk for
long distances—and I know that distance is growing
shorter. Just recently, he’s had balance issues—the
first “real” deterioration I’ve noticed since we started
dating several years ago. Of course, my heart sinks
at the revelation that he possibly could be getting
worse. Why would that surprise me? His type of
MS is progressive, after all. It seems surreal, cruel
and unfair to me that my amazingly kind, funny,
smart, loving and sometimes annoying husband
could succumb even further to this disease. Hasn’t it
taken enough away?
I try to focus on what we both bring to the
relationship—what we can do for each other. We
have the same sense of humor and love watching
shows like “ 30 Rock” and “The Daily Show.”
He cooks amazing gourmet meals that I happily
devour—even if we end up eating at 9: 30 p.m.
because he’s decided to try a new recipe. We
appreciate good wine, music, time with friends and
are eager to make some small renovations to the
house we bought last August. We have so much.
But, do you know what I really want? What really
gets to me? What really makes me hate that word
“caretaker” even more? I want to take a walk
with my husband—a nice long walk with him
on the beach, through all that heavy, grainy sand,
barefoot, without a bathroom in sight. That would
be heaven. That’s not a caretaker’s dream—a
caretaker might just dream of a break, or of having
a nurse or someone else who could help take the
“burden” off their shoulders. A walk on the beach
is a wife’s dream. A friend’s dream. My dream.
I ask him if he’s scared and he just says, “Of course I
am.” I ask him if he wants to talk about it and he says
Kelly Nieuwejaar lives in southern Maine with her