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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