One of my favorite photographs is of my wife, Debbie, sitting at the kitchen table in our apartment on 18th Avenue. I took it about a month after we were married. In it, she is smiling broadly, and her smile expresses such pure and simple happiness that it has never failed to put a smile on my face.
That was thirty years ago now, and we were just taking the first steps in our shared journey to a destination unknown. She is older now but to me even more beautiful. The same deep green eyes that lit up that photo still brightly shine, but now with the added depth of Motherhood and 30 years of loving and being loved. I wonder if it is because I am so in love with her and have lost any pretense of objectivity that I don’t see the same lines and wear on her face that I see on mine when I look in the mirror. Whatever it is, I see her how I see her, and I am still moved to tears when I watch her sleep.
I never planned to love anyone as intensely as I love my wife. I can’t imagine what I’d do without her. We’ve come so far on this journey, the whole time never straying from each other’s side.
But now we are slowly approaching the dark days that will be the late stages of Parkinson’s disease, and, even though it’s still a ways off, I ask myself, do I want to subject her to this? To seeing her partner, the man she loves, become a hollow shell. To seeing her soul mate growing sick and weak and incapacitated. To becoming my care giver and being forced to spend her remaining good days in the darkness of my bad days.
I am faced with a dilemma: I love her so much, I can’t imagine what the good days let alone the bad days would be like without her. At the same time, I can’t bear the thought of her having to take care of me, feeding and cleaning me, bearing witness to my fading dignity. Eventually I’ll become enough of a burden to test even the strength of our union, and it’ll only be natural for the love she’s felt for me to fade and be replaced by bitterness and resentment directed toward the unrecognizable figure I will become.
So I try not to dwell on these things. I usually push them out of my mind. The answer to my dilemma is to not waste good time thinking about the bad times that lie ahead, but rather focus my energies on appreciating the good days still left. Most of the time, this isn’t difficult to do. But there are constant reminders of Parkinson’s presence and the inevitable speculation of how fast the disease is progressing.
I’m a creature of habit. Whenever I leave the house, for example, I ritualistically check my back pocket for my wallet, my front left pocket for my phone, my front right pocket for my keys, and my shirt pocket for my reading glasses. This morning, while up at my cabin, I was working on pulling some ancient wire fence out of the woods when at some point my glasses fell out of my shirt pocket. The underbrush and dead leaves were thick enough that after thirty unsuccessful minutes of raking and looking through the weeds, I gave up. My Dad was working at his workbench in my garage, and we were due at my Aunt’s house for lunch. I told him we’d have to leave early enough to swing by Ladysmith and buy myself a new pair of glasses. I went inside and cleaned myself up, changed my clothes, and my Dad and I headed out in my Prius.
Right at the outer limits of the town of Bruce, on Highway 40 just south of Highway 8, I realized that my left pocket was empty and that I had forgotten my phone at the cabin. At the same moment, the speed limit changed from 55 to 35, and a rare cop, a State Trooper, caught me before I saw the reduced speed limit sign and pulled me over. As he got out of his car, I reached for my back pocket, and realized I had left my wallet, where I keep my driver’s license, at the cabin. In the more than 35 years of driving, it was the first time I had ever left without my license. It was of course my luck that this event coincided with the unlikely circumstance of a rare State Trooper pulling me over.
The State Trooper leaned into my window and explained that, even after I had seen him and started slowing down, he had me clocked at 45 miles per hour, 10 over the speed limit. He asked to see my license, and I explained I had just changed pants and left my wallet in my other pair. He then, since I didn’t have any identification, gave me a pad and paper and asked me to write my name down. Now I was really starting to panic, as Parkinson’s has left my handwriting completely illegible. I tried my best and handed it to him.
“I can’t read that”, he coldly stated.
“Sorry, it’s the best I can do”, I replied, then mumbled something about having Parkinson’s disease. He asked me to spell my name, and as I did, he wrote it down, and went back to his car. My Dad and I sat, waiting for whatever would happen.
He came back and gave me a $10 warning ticket for driving without a license. He was the epitome of class and professionalism, an extremely likeable guy, who could sense that, with my 85 year old Father at my side, I probably wasn’t much of a threat to society. He could have with very good reason made things miserable for me, but instead, he was kind and friendly and understanding. I thanked him; we turned around and got my license and phone, and made it to my Aunt’s just in time.
When I returned to my cabin to get my license and phone, I found them in the pockets of my other pair of pants in the dirty laundry hamper. Not only did I forget to obey my normal leaving the house ritual of searching my pockets, I had neglected my other ritual of emptying my pockets out when I take off my pants. It was another example of what has been an increasing pattern of absent-mindedness and lapses in concentration, and it leaves me wonder if my short term memory is going, and if these are the first indications of the dementia that often accompanies Parkinson’s disease. Then I remind myself that I am 52 years old, and forgetfulness is a normal part of growing older, and I shouldn’t panic just yet.
But this is the curse of Parkinson’s. Its path is unpredictable, and its scope is impossibly broad. Everything from autonomic to intellectual functions are potentially impacted, making you wonder every time a bite of food goes down the wrong pipe if it’s the well known Parkinson’s effect on the swallowing mechanism, or every time I misplace my glasses or wallet if it’s a sign of impending Parkinson’s related dementia. The curse of Parkinson’s is, when you boil it down, the curse of heightened awareness. You become acutely aware of every little sign of the inevitable decline that you know waits for you, and are constantly reminded that you are fading away.
It’s easy to get lost in the darkness of this curse. Once diagnosed, the darkness is always there, and you can never completely step out of its shadows. You know that Hell awaits you, and as time goes on, more and more of that Hell is revealed to you. I have come to believe that Hell is for the living, not the dead, visible in the suffering that we must all endure.
Depression and anxiety and emotional incontinence are frequent symptoms associated with Parkinson’s, and there are many scholarly articles out there that discuss whether these are neurological effects of the disease or reactions to stress, and there are studies underway trying to link these symptoms with the dementia that often occurs with P.D. I don’t know if it is neurological in nature or not, but I believe the root cause of all of these symptoms is heightened awareness. I know that I have suffered from depression and anxiety and, with a newfound tendency to get weepy eyed over the corniest of stimuli, have become emotionally incontinent as well.
The amazing thing, and I sincerely believe this, is that the heightened awareness I’ve experienced hasn’t been limited to the existential evidence of my eventual deterioration. I have also become more aware of my surroundings than ever before. If Parkinson’s has convinced me that Hell is here on earth, it has also convinced me that Heaven is here, too, and is in fact constantly within our reach. I have become more aware and appreciative of every day wonders, the seemingly small things that we too often ignore or take for granted. The feeling of the warm summer breeze on my face, the reflection of blue skies and white clouds on the glassy mirror of a still lake, the smell of freshly baked bread as it is taken out of the oven, the laughter of my children, the sound of my wife breathing and the feel of her sleeping body against me in the black dark of night, the warmth of the midday sun through my home office window on a Wednesday afternoon, the poetry of grace and speed and pure joy expressed by my dog, Max, as he runs free in our back yard, chasing birds, the shadows cast by late summer afternoon trees, the explosion of stars scattered against the northern Wisconsin sky above my cabin, the light of the lamp against its pine paneled walls, Van Morrison singing “Dweller on the Threshold”, my wife’s smile. I find myself more aware than ever that I am alive, and as I weaken and diminish physically, my ability to see and feel love, truth and beauty has been enhanced.
Buddhists believe that “to live is to suffer”, and I think this is true. We all have to deal with pain and loss. Only through love can we ease the pain of our suffering, and only by recognizing ourselves in the eyes of others can we love. These simple concepts are as easily overlooked as they are understood. That it took Parkinson’s disease to crystallize them for me shows how blinded by preoccupation I had become.
To have Parkinson’s is to appreciate what you once took for granted, and to see what you once were too busy to see. I hate the thought of what Parkinson’s will put my wife through. At the same time, Parkinson’s has made me aware of just how deeply I love her, and how much I treasure the time, good or bad, that we spend together.