The author, John Shuff, and his wife, Margaret Mary.
I recently spent five days in the Boca Raton Regional Hospital in an attempt to quell an episode with Multiple Sclerosis (MS), my first in 19 years. No one knows how to cure this chronic and progressive disease, so my stays are dedicated to stopping its inexorable advance. After a few days in the hospital, I have to say the support of the hospital’s personnel was just what the doctor ordered. I experienced the same treatment at the University of Utah hospital in 2000 when I underwent an operation for a spinal fusion.
Recounting a personal health crisis can be tedious for the average reader; after all, not many people have MS, and not many have had to negotiate the slow decline I have experienced. But that’s not the case with caregivers. Everyone can be a caregiver, and most of us will be cast in that role before it’s all over.
Chronic illness is tough on everyone, but the real comfort and strength we need to survive each day must come from our spouse, partner, friend—the person who ministers to our daily needs. They are the ones who help us do the things we would normally do for ourselves. Illness is not normal. Illness can rob you of your independence, your strength and your ability to take care of yourself. Illness demands that we swallow our pride and accept the help we need from others, whether it be bathing, getting dressed, any number of personal needs.
Over the years, I’ve listened to a lot of talks, tapes and sermons on suffering. I’ve read the books and talked to priests. Most messages are generic, with empty panaceas, devolving into well-meaning suggestions on how to cope. But no one addresses the angst and strain on the caregiver who deals with the sick or disabled.
There are moments I feel trapped by my disease. I feel lonely, marginalized, like I’m no longer in the hunt. That is how it is now, that is my reality. But I have to focus on that other world beyond mine, the one where my caregiver lives, the one inhabited by my family and my friends. I have to understand the emotions and concerns of my caregiver, my wife, Margaret Mary, the one whose world was turned upside down more than 37 years ago when I called from the Mayo Clinic to tell her I had just been diagnosed with MS. From that day in June 1975, it has had a profound effect on her life.
I know how much my illness has limited my wife’s life. I don’t feel guilt, and I don’t look back on what could have been. I mostly agonize for a woman who never signed on for this, who has been rocked by a rabbit punch that has transformed our lives forever.
For those who suffer from an illness, ask God for the comfort and strength to cope each day. Every day I ask Him to constantly remind me to be sensitive to Margaret Mary’s emotions, to be optimistic, to be cheerful. To make her life easier.
It’s the least I can do.