Dad was a person with Parkinson’s Disease. We may be tempted to comfort ourselves with thoughts like, “he had the disease, but it didn’t have him”. While that may have had some truth in it in the first five years or so, it did not as the disease slowly, insidiously, destroyed the dopamine in Ed’s brain. To minimize, to deny, is a slippery slope at the bottom of which is acquiescence, we concede the battle. We cannot concede the battle because dad has died. There are people in this room who have Parkinson’s Disease, who will get Parkinson’s Disease, who have loved one’s with Parkinson’s Disease. I sit on an advisory council with men and women my age, some a bit older, some younger, who have Parkinson’s Disease, or are caring for someone who has Parkinson’s Disease. I invite you to make the same promise that I made to Dad, that I will continue to make life better for people with Parkinson’s Disease, to support research for more effective treatment and to find a cure. Even in death, Dad is with us in these efforts.
In addition to impairing movement, and a host of other bodily functions, Parkinson’s Disease often robs a person of cognition; it spawns hallucinations, delusions and psychosis. A few years ago I sat with Dad during a time of intense cognitive impairment, and became somewhat haunted and distressed by the question, “are we our brain?” If dad’s character, his integrity, his graciousness, his intelligence and wit lie in the chemicals and neural pathways of his brain and these are depleted and twisted, where then will I find his essence? In truth, my question was, “where is his soul?” I was troubled, off and on, by this question, about the nature and place of Dad’s soul in a body wracked by a neurological disease, until Dad began actively dying. Only in the last few days have I arrived at an understanding.
I see that as my mother, myself, Avi, Harry, Esther, Dolly, Ryan, Christine, Steven, Dr. Scicutella, Caitlin, Aaron, Deb, Dimna, Dana L., Adolfo, Anthony, Andy and so many others cared for dad’s physical self, we cared with unwavering love and respect, for his spiritual self as well. We cupped Dad’s soul in our hands as we bathed him, massaged him, held his hands, made jokes, laughed at his jokes, hugged him, held him, fed and gave him drink. We touched and nurtured his soul every time Dad invited us into his altered reality and we joined him on fishing trips, herded elephants in Africa, built cathedrals, flew to Japan for wrestling tournaments, and restructured hospitals and rehab centers.
Where does Dad’s soul reside now?
Dad is of the water. His spirit is floating on the soft, glistening, ripples of waves as dawn breaks over the Chesapeake Bay. His spirit wafts down the Potomac River and blesses boaters and fishermen. Dad’s spirit hovers over the crab pots of Assawoman Bay in Delaware, rejoices in the catch and savors the smells and tastes of steamed crabs drenched in Old Bay. The fingertips of his soul dip into the waters of Mud Creek which meandered through our backyard in Iowa, and into the Mississippi River, sensing the strength and unpredictability of its currents.
Dad is of the Earth. His spirit walks the shores of Dares Beach, Maryland and reaches down for driftwood, shells and shark’s teeth embedded in middens of sand. His spirit sits on the beach in Delaware gazing at the rolling waves of the Atlantic and lets handful after handful of sand sift slowly through it’s fingers, relishing every grain. His soul digs deep into the rich dark earth of Iowa and entwines with the roots of shag bark hickory trees. His spirit drifts over the limestone quarry of Davenport, Iowa and takes pride in his accomplishment as a businessman.
Dad is of the sky. How he loved birds and wild fowl. His spirit flies with the Great Blue Herons, Osprey and Egrets of the Delaware bays, with the Seagulls and Bald Eagles of the Chesapeake waterways and with the Eastern Gold Finches, Red-tailed Hawks and Barn Owls of Iowa.
Dad is of the air. He is around us now and always. We can breathe in the king of one liners, the inventor of the group hug, an activist, a leader, a man who defined the vagaries of his children’s lives as “it’s a learning experience.”
We can breathe in the self proclaimed “vice president of mischief”; a man who once sat on the beach in Bethany, Delaware, holding a bag of roasted peanuts, and with superior hand-eye coordination shot them like darts onto the arms, legs and shoulders of those of us sitting around him.
We can breathe in the spirit of a man who loves his high school sweetheart, his family, his caregivers and his friends. We can breathe in his graciousness in the midst of suffering, his daily gratitude towards each and everyone of us that cared for him and loved him. Dad was certainly one of the most loving persons in life and as his soul encircles us for the rest of our lives, we will continue to feel his love, and to love him.