BEYOND OUR SPHERE
By Suzanne Mintz

Peter Dickinson is one of my favorite authors. He writes mysteries, but they are always more than mysteries. They are beautifully crafted stories that shed light on the human experience—tales that make you stop and reread a sentence two or three times before you are willing to move on.

I just finished one of his latest books, Some Deaths Before Dying, which included a sentence I’ve not been able to forget, perhaps because it was said by the lead character, a woman who was dying from a degenerative muscle disease; at the time of the story, she was bedridden, able to move just her eyelids and speak only haltingly. She had been a vibrant woman who in healthier years had to some extent been a caregiver for her husband, a World War II prisoner of war who came home bearing psychological scars. Referring to what had happened to her hushand, and therefore to her, Dickinson writes, “She, too, had been betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that.”

The sentence took my breath away: “Betrayed by happenings beyond her sphere, and now she was expected to live and behave like a normal citizen, despite that.” Isn’t this what has happened to all of us who now answer to the title of care-giver? Isn’t this what has happened to the spouses, parents, children, and siblings for whom we care? We’ve been “betrayed” by things we couldn’t control and presented with the daunting challenge of trying to recreate “normalcy.”

It isn’t easy to recreate normalcy when you’ve been hit by what feels like the equivalent of an atomic blast, yet this is what is expected of us, and indeed what we always strive to do. But I have come to realize that for me and my husband Steven, normalcy is very different than it is for families that don’t have to deal with disability, the almost perverse attention to the basic acts of life that come with it, and the myriad arrangements we must make to do ordinary things.

And we have created a new “normalcy” for ourselves. It is the pattern of our day-to-day lives given Steven’s current level of disability. In the early days of his multiple sclerosis (MS), when he could still walk, we had a different definition of normalcy; as his MS progresses, we will have to redefine normalcy yet again. I haven’t decided whether this is easier to do when changes come gradually or because of a more dynamic occurrence.

Certainly, gradual change is easier to assimilate into your life, but it lacks the clarity of catastrophe and doesn’t always give you the opportunity to recognize the change for what it is because it sort of oozes its way slowly into your life.

But, regardless of whether changes come swiftly or slowly, they play havoc with our emotions, and we are forced to deal with what I have come to think of as the bridge between anger and acceptance. Anger—an emotion we have been taught to try to hide—is a healthy emotion, one that reminds us we are very -much alive and that we burn with the fire of desire for the good things of life. Expressing anger at the difficulties we face, the indignities we must endure, the complex arrangements to be made to do what should be simple tasks done by rote, is healthy; to rail at the gods is okay—for a time.

But continuous anger that can’t be soothed, that lies buried beneath a calm exterior and festers like a dirty wound, isn’t healthy. Anger must eventually give way, move beyond itself to acceptance of the situation—not placid acceptance that saps energy, but a dynamic acceptance that translates into actions that help us make the most of our transformed lives.

Despite the difficulties we confront, life awaits us. It challenges us more than it does the families of people who are able-bodied and mentally fit. We all wish it would challenge us less, to be sure, but this is the hand we have been dealt, and the artistry of our life is defined by the picture we create with our “less than normal” assortment of crayons.

My life has been “betrayed by happenings beyond my sphere,” and for many years I could not accept that. But at some point I crossed the bridge and consciously chose to accept my new reality.

Now with open eyes, I act purposefully and strive to “live and behave like a normal citizen.” I find this requires help. I can’t do it alone, so I call on others to help Steven and me have as normal a life as possible. Sometimes I must purchase the help I need, such as for modifications in our home. At other times the help comes from kindly people willing to go out of their way to lend Steven an extra hand.

Anger, acceptance, action—they have become a triad in my life. Anger is the emotion that churns my soul; acceptance is the balm that soothes it. But action is what allows me to live a life full of hope and meaning. I hope it is the same for you and all who have been “betrayed by happenings beyond our sphere.”

Reprinted, from Suzanne Mintz’s column, Caregiver Connection, in Paraplegia News (March 2001), and distributed by permission of the National Family Caregivers Association (NFCA), Kensington, MD, the nation’s only organization for all family caregivers. Suzanne Mintz is President and Co-Founder of NFCA. For further information, call 1-800-896-3650 or email