Imagine This
Imagine This
I inherited a number of values from my Italian ancestors: love of learning, a strong work ethic, devotion to family, and perpetual pursuit of al dente cooked pasta. I also received the gene dedicated to the mistrust of good fortune and the defense against catastrophe by simply imagining it. This legacy works like this. If I board a plane to St. Louis, I predict that the plane will crash, say near Effingham, Illinois. This prediction makes certain a crash will not occur. Now, the plane might land just fine, but as I walk to the rental car agency, a six inch meteorite drives me into the ground, as if Thor took his hammer and engaged in whack-a-mole with me as the mole. I had not considered that possibility. The method of my demise was a surprise, which is why many of us dislike surprises.
I have devoted some time trying to explain that his dynamic—warding off disaster by imagining it—to Polley with the concomitant responsibility of not insulting fate by enjoying good fortune. An example: We left my daughter Christie’s home in Connecticut and endured some light rain and some heavy traffic complicated by irreverent drivers. When we finally got to the entrance to the New York Thruway, Polley, relieved, said, “It’s all down hill from here.” Less than five minutes later we were stuck in a bumper to bumper traffic jam as a snow squall limited visibility to the hood of our car. I glared at Polley—“Don’t you know better?” I shook my head. “You’ll never become Italian.”
This potential offense to the gods by publicly announcing a joyous state of affairs was a huge no-no in my family. At those Sunday three hour dinners, relatives would compliment my Mom. “Aunt Lee, the ziti was delicious!” My mother would nod, and her smile could convey her gratitude. She would turn to me and say, “The gravy came good.” The gravy came good. The gravy came good not only because of my mother’s skill and love of cooking, but because she imagined it not coming good and not acknowledging good fortune. You rarely hear a person of Italian descent say, “I am so happy!” That is not right. That expression of bliss is just not done. Such an exclamation is equivalent to giving Thor the finger.
My Italian family hated surprises, because surprises were fraught with potential disasters. Given the history of the health of male family members, I imagined a heart attack(thereby warding it off!), and various forms of cancer, traffic accidents, etc. I knew I would die of something…someday…but the more I imagined, the more my odds improved of living another year. Until the surprise came.
On a medical checkup, I asked my family doctor why was my left foot having bouts of shaking. He examined me, and said, “As you get older, lots of people develop tremors.” The tremors continued sporadically, at social gatherings, watching Villanova basketball games, visiting doctors’ offices. Some days the tremors were so strong and long lasting, I would find myself, my keyboard and the computer I was composing my blog on bouncing across the room. In conversations, especially while discussing politics, my left foot would be stomping so hard, I imagined people calling me “Thumper.” 
My podiatrist strongly suggested I make an appointment with a neurologist. The surprise came at the neurologist’s office. He started by saying, as he looked at my brain scan,“Well, at least it is not brain cancer. I believe you have Parkinson’s disease.” Parkinson’s disease? I had not imagined that. As Dr.N explained what was happening to me and what would be happening to me, Thumper went for the record.
Actually, some healers believe that Parkinson’s is not one disease, but will eventually be divided into several conditions given the variety of symptoms and conditions that afflict its victims. One universality is that, for some reason not totally understood, the brain stops manufacturing dopamine, a neural messenger that our bodies make and our nervous system uses to send messages to our nerve cells. It is a postal worker in your neighborhood who delivers the mail. As the post office starts firing postal workers, fewer people get their mail on time……….if at all. Parkinson’s is a neural condition that affects the muscles in my body. It has plenty of muscles to choose from, and there is always that nasty surprise when it decides to immobilize a muscle group.
As my conditioned worsened over time, Dr. N prescribed different medications. One of them was a patch that Polley placed on the back of my shoulder, always in a different spot. It itched like crazy, and, when Polley removed it every night, it left a red patch that resembled a rectangular sunburn. At the gym, I caught a number of fellow workout enthusiasts staring at a number of patches on my back. They would look at me and their eyes would ask, “What the hell are those patches for?” Anticipating their questions, I would usually say, “Safer than tatoos.”
Yes, I was flippant and made jokes about my Parkinson’s, but on the inside of my being, the part invisible to those who were not me, I was descending into a black hole, sucking all I believed in and lived and loved with me. Since Parkinson’s is in my brain, I could not trust my brain. My whole life I thought my brain and I got along great…best of friend. Yes, we had our disagreements, but we were good at negotiating and compromising.
Who or what was creating these nightly nightmares, these horrible images of what was going to happen to me, these challengers to my life choices and ethical beliefs? I began to sway while discussing issues with friends and family. Gone was my teaching voice since Parkinson’s affected my vocal chords. I would strain in making myself heard, and repeated myself so those around me could hear me so often it became exhausting to speak. Sometimes I decided to not speak at all, thus sparing me that exhaustion. Speaking, dressing, walking, all those activities most of us take for granted are daily struggles for people suffering from Parkinson’s. Getting dressed is a major operation every morning. Buttons. I hate buttons. On one visit to Dr. N, I mentioned how many light years it took me to button my shirt. Before he answered, Polley noted that I could still tie flies for my flyfishing adventures, flies smaller than a button.
“Dr. N, I inquired, “How can I tie such small flies and yet struggle with buttons”
Polley tried to answer my question. “Maybe it is because you have been tying flies for so long that that you still can work your fingers well.”
My neurologist looked at her and then at me. “How long have you been buttoning your shirt? Parkinson’s surprises.
Similar problem with zippers. I remember as a child my mother wrapping me in fourteen layers of clothing so I could go outside and play in the one inch of snow that had fallen overnight. The last step was to encase me in my winter coat which I could not zipper. I could not zipper for two reasons. One, the thick wool sweaters, heavy shirts, thermal underwear and scarves doubled my weight and I could bare reach the zipper beginnings, and, two, my fingers were not nimble enough to plug the left flange of the zipper into the slider (and you thought you were not going to learn anything from this blog). Now, as a 75 year old, I have the same struggle.
This difficulty in getting dress presents enormous challenges for preparing my daily apparel. At times I get so frustrated I simply wish to put on a bathrobe, one with no buttons or zippers. But I have seen pictures of Homer Simpson in such dress, and I am forced to dismiss that choice of garb.
I know it is going to get worse….much worse. My digestive system is a favorite target of the Parkinson’s minions, who relish destroying any kind of regularity. Currently, they are playing with my loss of appetite (I could actually turn down eating a cannoli!), causing weight loss, and disturbing peaceful sleep. I wake up three hours after going to bed and cannot get back into a blissful sleep.
There are also surprises that come from somewhere deep inside my psyche. I have developed that blank stare, that open eye look, the eyes of Fitzgerald’s billboard dentist, Dr. T.J. Eckleberg.
My stare takes in the distant horizon, seeing nothing. The world grows smaller….much smaller. It seems that I spend more of my waking hours in the waiting rooms of physicians’ offices. I draw back from attending some social events for fear of being the swaying, blank staring, shaking guest, an object of pity and a reminder to all attendees that time flies for everyone.
I belong to an online Parkinson’s group, a supportive collection of bankers, plumbers, teachers, carpenters, salespeople, males, females, older men and women, younger men and women (who are surprised much too early in life) all of whom share one commonality. The members confess their fears, narrate their afflictions, ask for common experiences. The subtext is the same and usually unspoken because of its power. Parkinson’s is fully of nasty surprises, insidious and merciless, and its victims all know the one damning truth that colors all our waking moments: our pain and sufferings will only get worse for the rest of our lives.
My parents taught me the importance of perspective in surmounting life’s challenges. My father told me, “Look to your left and you will see someone who has it worse than you. Look to your right and you will find someone who has it better than you.” There are human beings who suffer from conditions and diseases worse than Parkinson’s, and I know that. Some of these people have been students, colleagues, and family members. But there are those days when rationality cannot overcome the feelings of anxiety, disorientation, and pain.
On a recent doctor’s appointment, the nurse took my blood pressure, oxygen intake, weight, and entered it into the computer. Then she followed the protocol and asked me several questions. “Do you find it is more difficult dressing yourself?”, “How many alcoholic drinks do you take in a week?”, etc. The usual stuff. Then she asked, “How often do you experience depression, anxiety or a feeling of hopelessness?”
I stared at the young nurse for a moment or two. I wanted to say, “I have Parkinson’s. My abdomen feels as if a nozzle from a Siberian natural gas pipeline has been plugged into it, my legs are exhausted from spending most of the day experiencing earthquakes, my favorite foods inspire only nausea when I think of them, I have to strain my vocal chords to whisper “Thank you.”, walking anywhere is like straddling a highwire tightrope near the ceiling of a circus, I can no longer flyfish because if my balancing act fails and I fall in the water, chances are I will drown because my arm muscles are not strong enough to life me out of 4 inches of water….” But I restrain from saying any of this. Smart and kind as this nurse is, youth is a strong limiting factor. I answer, “Some days are better than others.” She nods knowingly, an empty gesture, and she enters my answer into the computer.
I suppose this blog is a rant, but that is not its purpose. Even my relative hopelessness has some hope. I hope if you have Parkinson’s that the small world the disease has shrunk for you can be expanded if you reach out and get involved in things. Yes, it will prevent you from pursuing your favorite activities, but find others that you can do. I will miss flyfishing, but I can still tie flies and share them. I can continue writing and sharing my experiences. There are exercises I still can do. Most importantly, I am fighting hard to not let Parkinson’s define me. It has power over my body, but not my soul.
If you do not have Parkinson’s rejoice in simple things, simple movements, simple daily pleasures. Rejoice in the fact that you can go for a walk along a nature trail, that you can bring a cup of coffee easily to your lips, that you can hold your loved ones in your arms and dance with them. Most of all, become Italian for a moment and imagine contracting Parkinson’s. Then you can cross it off your list of fears….and have a cannoli.
