By Erik Dolson
We talk about the Parkinson’s. We even laugh about it, when words come out wrong and there’s no consequence.
We were holding hands and walking back to the boat where we live when Irish wanted to say “Do you remember when …” Instead, it came out “Do you remember me?”
“I try to remember you,” I said. “Sometimes.” Whatever she wanted to ask evaporated by the time we stopped laughing.
This morning she said, “I don’t want us to get out of bed,” as I was making wake-up noises and just thinking about putting on my sweater and sweat pants and pouring coffee set up the night before. It was 5 a.m., the time of day that marks when I am unable to drift back to sleep.
“You don’t have to get up,” I said.
“No, I don’t want us to get out of bed,” she said as if this time she’d said it differently. The “us” was inclusive. If I got out of bed, then “us” weren’t still in bed. I crawled back in for a snuggle, but the heavy comforter was warm and Irish was warmer still, the occasional hot flash turning her nearly incandescent.
“You’re sleeping with a thermos … Oh, my god! sleeping with a thermos … I meant to say …” she paused and searched for the word that should have been there.
“Furnace?” I offered.
“Yes, you’re sleeping with a furnace.”
I’m better now at finding the similar vowels and mirrored concepts and the blanketed meaning in what she says. It usually works unless the topic is important or my congenital impatience rears its ugly head, or I’m frightened by all this.
But this symptom of Parkinson’s is especially frustrating for Irish, a former English teacher who later became an editor for national companies creating state-wide assessment tests that parsed a student’s ability with words, and later, one state’s director of assessment in charge of the entire program with a budget in the millions.
Furnace, not thermos.
In one of the medical exams to document her disability, the doctor wrote that her ability isn’t that far from normal, but given her former responsibilities and abilities, “normal” probably represented a significant loss.
“No shit,” was her response reading this conclusion.
But we move on, discuss a day’s schedule that includes laundry, my book that vehemently refuses to be finished, dinner plans. Irish has used denial as a survival strategy for many years, long before I met her and probably long before her Parkinson’s diagnosis. Denial uses the unknown as a shield against the inevitable. It can be quite effective.
False pride has allowed me to defend myself as a realist, but as far as her Parkinson’s is concerned, I move back and forth between her camp and mine, feeling at times like a traitor to each.
Yesterday there was an article in the New York Times written by the daughter of a man who had purchased a sailboat. Repurchased, actually. He and his wife had owned it once before, it was part of their family life. They lived not far from where Irish and I currently float on our sailboat, as guests of Canada.
The story included the names of places Irish and I sailed last summer, and the summer before, not long after I bought this boat and Irish entered my life. The author and her father sailed to favorite places that triggered memories of their shared past, places that Irish and I have had adventure and love.
Of course I wanted to share the story with Irish. But I couldn’t.
The author’s mother had died. She’d suffered from Parkinson’s. Parkinson’s doesn’t kill directly but results in death, and the process from relative health to the end of life is often long and difficult. The disease was the reason the sailboat had been sold, the first time.
Now her father was in his eighties, and could not sail by himself, “single-handed.” The other day Irish told someone that I essentially sailed single-handed, given that her lack of physical ability and stamina made her “half a hand,” especially after she fell on the boat a year ago and lost her right eye.
I went from wanting to share the story to being unable to bring it up. It was too close, made Parkinson’s too real. Even though we have only a couple of years and not the history of a lifetime together, the timelessness of love may erase that difference. It felt like the story was about us and life that just hasn’t yet arrived.
The other day we were discussing what would happen if I fell off the boat. Irish said she needed to know how to drop the sails. I said nothing as I remembered how I burned my fingers when I tried to restrain the main halyard with my hands as the sail collapsed into its cradle, and how thankful I was that I didn’t lose those fingers, or worse if I hadn’t been so fast.
Irish is anything but fast. I said nothing as I thought of her struggling to retain the knowledge of how to tie a bowline, how to get fenders just above the water, how to tie our lines when we dock. My soul recoiled when I remembered the solid but hollow sound of her head when it stuck the coaming and crushed her face.
I’ve tried to pack as much adventure and experience as can possibly be jammed into each nook and cranny of this life, to create memories that will be pulled out thread by thread as I lie immobilized on some future death bed watching the movie go by. If I die making those memories, then the life has been lived to the fullest.
Irish would drop the mainsail if I fall off the boat? What the hell? What the hell are we doing out here where her life is at risk if I fall off the boat or have a heart attack or choke to death on a piece of poorly chewed halibut?
Now I struggle with my cowardice. Not in the face of death, but over a story written about another couple in another time who lived through what we are living through. A story that makes Parkinson’s too real, “un-denial-able,” too difficult to laugh about.