When I was little, before toys had been invented, my imagination was the primary source of entertainment. With my imagination, in the living room, I could make a store of chairs with corn kernals and toilet paper rolls and all sorts of treasures that were laid out on each chair as the merchandise. Yes, I have a bit of the entrepeneur in me. I would sit on the floor in front of that little ivory colored table model radio off in a wonderful world of adventures, The Lone Ranger, Gang Busters, The Shadow, Sky King, Sargent Preston and his dog King, The Green Hornet, Superman.
I cannot describe to you the magnitude of my disappointment when The Lone Ranger came to television. Who was that skinny little man and his tiny horse who claimed to be the Lone Ranger and Silver? No human actor could measure up to the Lone ranger of my imagination. I liked the world of my imagination. It was exciting, filled with possibilities not limited by the harsh realities of being a kid with Rheumatic Fever who wasn’t supposed to do anything that would break a sweat. My brothers and sisters with whom I now enjoy a wonderful caring relationship in spite of the miles between us, my brothers and sisters were out of the house and on their way long before I headed off to college. For all intents and purposes I was an only child, who spent lots of time in a world of my own making.
I liked that world. In that world I was whole and fulfilled. In the other world, the one at school, with the other kids, the one in which I was measured by Dad’s expectations, teacher’s expectations, strata determined by others — most of whom came from far more affluent families than mine — in what some call the “real” world, I was not worthy of notice.
You know, reality is not all it is cracked up to be. Yes, I am short and chubby and forgetful and often given the Senior Discount without asking for it. On the inside, I am snappy and hip and sharp and with it and young and sexy. You wonder why I contend that denial is underrated?
Let me tell you what I think Mary Ann feels about this denial business. For the first five years after diagnosis Mary Ann refused to let me tell any but a couple of conficants that she had Parkinson’s. In fact she was not convinced she had it. If I were to press her on the matter, some twenty-two years later, I think she might just suggest that maybe she doesn’t really have Parkinson’s.
When Mary Ann says, “they won’t let me in the kitchen any more,” I think she means, I could do it — I could chop those vegetables, wield sharp knives, and handle those hot pans just the way I did when “they let me in the kitchen to cook.” (Yes, I am the “they.”)
When Mary Ann hops out of that chair and heads off for whatever, I think in her mind, she does not have Parkinson’s, she will not faint due to having Orthostatic Hypotension (fainting due to low blood pressure — a mysterious combination of the disease process and side effects of meds).
I am convinced that it is her denial that has kept her alive, fueled the feisty stubbornness that has brought her through heart attacks, clogged arteries, congestive heart failure, a life-threatening bout with pneumonia, a stroke. As far as she is concerned there is nothing wrong with her but limitations put on her by a bunch of worry worts (most named Pete).
Back to the Lone Ranger. I liked the Lone Ranger of my imagination better than the one using an ordinary human actor, limited by reality. While it frustrates me when I am trying to help Mary Ann stay safe, avoid trips to the hospital, keep alive, I think denial is a necessary tool for daily survival.
Let’s be straight about this. Every time Mary Ann is in bed and very quiet, a little voice tells me to listen carefully to be sure she is still breathing — that she hasn’t died. Every time she gets up to walk can be the last time. She can faint or lose her balance and hit her head on something. Head injuries are one of the most common causes of the death of someone with Parkinson’s. Yes, this is part of our reality. We have been to the emergency room. I have had to call the children to come from other parts of the country, told that she might not survive the night. We have been told twice that she was within a hair’s breadth of going on a ventilator. Yes, Parkinson’s Disease Dementia (a Lewy Body Dementia) has begun and is likely to get worse until she does not recognize me or the children. Yes, she may choke on her food (aspirate it into her lungs) and not survive. Plaque might break loose from that rough surfaced lesion in her carotid artery. A clot might form due to inadequate heart function — a clot that could take her in seconds.
That is reality. Is that how we should live, facing reality moment by moment, immersed in the truth? Hell, no! (Excuse my French, as they say — please don’t be offended if you happen to be French — Mary Ann is.) The way to live is in denial! Every day when we get up, we are as alive as anyone else. We have things that need to be done that are shaped by our circumstances, but we are as alive as we were yesterday and as we expect to be tomorrow. Don’t feel sorry for us or patronize us or suggest that our quality of life is any less than anyone else’s. We love and feel and dream. We are filled with the beauty of spring flowers and blue skies with puffy clouds. We draw in the wonderful scents after a rain, we eat ice cream voraciously. We cherish friends.
That is the reality in which we choose to live. In our denial, we are not foolish. We do what can be done to ready ourselves for things that are likely to come. We have purchased our burial plots. We have written down our preferences for funeral services. We have chosen to live in a maintenance-free (hardly free) home. We have enlarged doorways for wheelchair and walker. We have purchased a lift for times I am unable to get her up. We have checked out options for future care. We have living wills and durable powers of attorney. We are not stupid. We acknowledge reality and deal with it. We just choose not to live in it day by day.
Give me the bigger than life Lone Ranger I saw in my mind’s eye, as I heard his booming voice with with my mind’s ear say, “Hi Yo Silver, Away.”
You can have Reality. Mary Ann and I choose Denial.
The Caregiver Calling 