By Marvin Wiebener
The word caregiver has many meanings, with
definitions that run the gamut of tasks on a broad continuum, from
simple household chores to end-stage palliative care and everything
in between. It’s something many of us never give a second thought.
Caregiving—we believe—is for children, the elderly and those who are
ill, but not for us, those who are healthy. We have jobs to do,
schools to attend, families to raise, and finally a retirement to
enjoy.
I know, because I was one of those—fifty-six
years old and healthy as the proverbial horse. Didn’t smoke, ate
healthy and exercised, but nevertheless, a physical anomaly occurred
that sidetracked not only my life but my wife’s as well.
First came the stumbling, then the cane. Then
came the diagnosis—a cousin to Lou Gehrig’s disease—primary lateral
sclerosis. Major symptoms include loss of balance, weakening of legs
and arms, swallowing and speech difficulties. The loss of bladder
control is but one of many minor symptoms, all irreversible.
After many hard falls, I was ordered to use a
walker. I resisted, even denied the progression of the disease; but
for the sake of others, I eventually acquiesced. Now, some years
later, a motorized wheelchair gets me around and a breathing machine
helps inflate my lungs at night. You might say my life has changed
for the worse, and from a bystander’s point of view, that could be
so.
But wait. Before you stop reading, thinking I’m
looking for sympathy—some poor creature riddled with self-pity—read
on.
In her career, my wife rose to executive
leadership positions within two state agencies. She is one of those
rare people who interacts remarkably well with people and leads by
example—a true class act. If she had chosen to do so, Peggy could
have aspired to even greater things, but duty called. Everything was
put on hold, moved to the back burner, to use an overworked
metaphor. After thirty years of hard work, some life plans were
simply scrapped in favor of crafting an environment of physical and
emotional independence for me.
I recall the exchange of vows. “Do you take this
man…to love and cherish…in sickness and in health?” Her answer was
yes; her teary eyes and warm smile confirmed it.
My disease cannot be overlooked or ignored. It’s
there no matter where we are, what we are doing, or what time of day
it is; but the focus is never on the malady. The focus is always on
what can be done despite the malady.
Peggy operates this household with extreme
efficiency and an attitude I don’t quite understand. The small
things she does for me are too numerous to name here. It’s a
struggle to hang onto one’s dignity when facing a loss of autonomy,
and it’s not easy to constantly have to ask for simple things; but
as much as possible, my needs are lovingly and wordlessly
anticipated—washcloths placed within my reach, gas in my riding
mower when I feel up to that chore, ice water next to my chair. We
live in the country and every day Peggy drives into town, without
complaint, for the newspaper. When we go out to eat or to a movie,
she disassembles my scooter and loads it; and when we get there, she
reassembles it. I watch, admiring her and thankful for her
sacrifice, although she gets miffed if I use the word sacrifice. She
says it isn’t sacrifice, “it’s love.” She doesn’t quite understand
why I don’t quite understand. She just goes on about how I’d do the
same thing if she were in my shoes.
You might think—I would have some years
back—that we, Peggy and I, would be unhappy or at least have
stretches of hopelessness and despair; but when those moments come,
and they do on occasion, they’re short-lived, fleeting, gone before
they have time to root. We tease one another, we laugh and hug a
lot, and sometimes we shed tears together.
It seems that in this short life we’ve been
given, we humans spend an awful lot of time seeking a state of—to
use a ’60s term—self-actualization, a state of being that is elusive
at best. Most of us never get there for one reason or another;
consequently, we think that state of being is unattainable. When I
finally accepted the fact that my disease was irreversible and that
I was destined for a severe lifestyle change, Peggy intervened. That
was five years ago, and she’s never looked back. She keeps me
focused on the things I can do, the things I enjoy; never on the
infirmity.
To say I’m not disappointed that I can’t
accomplish my retirement goals would be untruthful. On the other
hand, I wonder if I would have found the happiness I now feel. I
don’t know; never will know for sure. I suppose being happy is just
one of those happenstance, personal discoveries that comes with the
aging process under these kinds of circumstances. At any rate, the
smile on my face and the fulfillment I feel in my soul aren’t due to
a particular inner strength I possess but to the unconditional love
of my caregiver. My wife. And that’s a gift no disease can take
away.
Marvin Wiebener is a former juvenile and adult corrections officer.
He and his wife Peggy live in their country home near Thomas, OK,
where Marvin enjoys writing. In July of this year, he published his
first mystery novel, The Margin, www.outskirtspress.com/TheMargin.
You can contact Marvin at mwiebener@pldi.net.
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