National Family Caregivers Association

Friday Nov 20, 2009

Creating Your Own Normalcy

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, stories that make you stop and reread a sentence two or three more times before you are willing to leave it there on the page and move on.

I just finished one of his latest books, Some Deaths Before Dying, and there was a sentence in it that 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 and at the time of the story was bedridden, able to just move her eyelids and speak only haltingly. She had been a vibrant woman who in her healthier years had to some extent been a caregiver for her husband, who had been a prisoner of war during World War II and came home bearing psychological scars. In referring to what had happened to her husband, and therefore to her, she thought: "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." Indeed, isn't that what has happened to all of us who now answer to the title of caregiver? Isn't that what has happened to the spouses, parents, children, 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 an easy thing to do-recreate normalcy-when you've been hit by what feels like the equivalent of an atomic blast, and yet that 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, with 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 illness, when he could still walk, we had a different definition of normalcy, and I know that as his MS progresses, we will have to redefine normalcy yet again. I haven't decided whether it is easier to do when the changes come gradually or when they come 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 the 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 us as the bridge between anger and acceptance. Anger, an emotion we have been taught to try to hide, I have come to think of as a very healthy emotion, one that reminds us that we are very much alive and that we burn with the fire of desire for the good things of life. Expressing our anger at the difficulties we face, the indignities we must endure, at 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 anger that is continuous, that can't be soothed, that lies buried beneath a calm exterior and festers like a dirty wound, that isn't healthy. Anger must eventually give way, move beyond itself to acceptance of our situation, not placid acceptance that saps our 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 the able-bodied and mentally fit. We all wish it would challenge us less, to be sure, but it is the hand that we have been dealt and the artistry of our life is defined by the picture we create with our "other 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, and now with open eyes I act very purposefully and strive to "live and behave like a normal citizen." I find it requires help. I can't do it alone so I call on others to help Steven and me live as normal a life as possible. Sometimes the help I need is help that I must purchase, such as when it requires modifications in our home. At other times the help comes in the form of kindly people who are 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 and acceptance is the balm that soothes it, but action, action is what allows me to live a life that is full of hope and meaning. I hope it is the same for you and all of us who have "been betrayed by happenings beyond our sphere."

Suzanne Mintz is NFCA's president and cofounder.