My Grandfather

I have one photograph of my paternal grandfather holding me in his arms.  It is late in 1968 and he is wearing a dark suit jacket and a tie. The smile on his lined face is full and expressive, and I’ve often felt as if I can hear him laughing when I look at the black-and-white image. I am not yet one year old, and it is my first Christmas.

I was his first grandchild. He is standing, another rarity in my photographs of him. I have only thin, watery memories of him standing, ever, and then he always had a walker. Only five or six years after he was upright and smiling, my grandfather lost his capacity to stand and to walk. I have no memories of seeing him in anything but pajamas and a striped bathrobe. He still smiled at me often, but even his expressed joy faded to facial stillness that matched his stony posture. He sat in an overstuffed rocking chair, his bedroom the first room at the top of the narrow, winding stairs in his home. He rang a small brass bell that tinkled in the air with light happy tones that belied their meaning. They meant he wanted someone to come upstairs. They meant he needed something and couldn’t speak it or reach it or get up and walk to it.

They meant my grandfather was disappearing into the paralysis of Parkinson’s disease.

My MS Diagnosis

What you just read is excerpted from a longer piece of writing about “my deep but confusing connection to the silent neurological disease inside (my grandfather).” I received my own unwanted diagnosis of multiple sclerosis when I was 30, and started on my personal path of trying to understand my family’s history of chronic central nervous system malfunctions. We are, as they say, not right in the head. Or the spine. Or the nerves at large. Roll in a few of us on the autism spectrum and we really are quite the motley crew of good-hearted people who are kind of…what do I want to call us? Customized, maybe. Let’s go with customized.

After over two decades with an MS diagnosis, I now have a neurologist looking into the idea that what’s going on with me is something else entirely. And though the story of my grandfather did not end well–or more accurately the way I wanted it to end– another member of my custom crew, my great-uncle, lived life with Parkinson’s into old age on his feet and still smiling, albeit less often over time. I find myself bookended by these two men and their stories. I can hear them telling me things even though they are long dead. Perhaps not coincidentally I have a growing interest in the traditions of Dia de los Muertos and the idea that as long as your family members are in someone’s memory they are still alive. I stand in this world between two men in the next, and I am listening.

This is some of what I think about when I reflect on my grandfather and my uncle and their Parkinson’s.

A Hard Parkinson’s Story

My paternal grandfather was an old-timey man’s man. He served in the army, worked on the railroad, and was an assistant warden at a state penitentiary. He also smoked cigarettes for decades and developed emphysema; if you are unfamiliar with emphysema, count your blessings. I don’t remember ever seeing him smoke, but I can close my eyes and hear the sound of his cough, simultaneously rasping and damp, like a ball of wet newspaper and straw sat heavy in his lungs. The damage from emphysema is irreversible. By the time he knew he had Parkinson’s he was no longer a candidate for any kind of exercise therapy.

It’s difficult for my father to talk about his father. I have many questions but the unique pain that comes over my dad’s face when I ask about my grandfather is too high a price. In essence I know all I need to know. His lungs were destroyed, and he was left with no real methods by which to, as my friend Allan Hugh Cole, Jr., likes to say, “tame the Parkinson’s beast.” One day he was just gone, no longer in his home. My grandmother was alone. My parents explained that they had taken him to a VA hospital in another state. I never saw him again, not even a picture. A handful of years later, he was laid to rest in Arlington National Cemetery. I don’t know what I think anyone should have done differently. I was a child and my understanding is limited and colored by that fact.

I felt then and still feel that something should have gone another way. Somehow.

My Uncle

I watched a different story unfold in my uncle’s life. His skills and fortune with the PD beast were a study in contrasts with my grandfather’s.

He was a cardiologist at the Mayo Clinic. Tall and thin and while astonishingly gentle and quiet, he could exhibit a kind of physical stamina seemingly reserved for the bravado crowd. At one point I thought he had moved to the Grand Canyon from Rochester, Minnesota, as I heard more stories about his canyon trips and hikes than I did about his clinical work. Family members started to ask to go with him when he went out West. It became “the thing” that we all wanted to do. Hiking the canyon with Uncle Guy was a kind of spiritual rite of passage into a unique intimacy with him and with others who had made the journey. If you couldn’t make the trip in  person, you looked at hundreds of his Kodak slides and listened to him describe the natural beauty and physical experience of walking down into, and back up from, this ancient natural wonder.

My uncle lived his life committed to cardiovascular health. But if there is any truth in the saying, “All things in moderation, even moderation,” then he was committed to that, too. One of my favorite memories from his house was the enormous glass bowl of potato chips he kept in the dining room table. Whenever challenged as to why a cardiologist would keep salty fried carbohydrates at the ready all the time, he would reply thus: “I tell my patients the truth. When they ask me if I smoke, the answer is no; if I drink, rarely. Red meat? No. Exercise, yes, often. But you know what? I’ve discovered something. They never ask about potato chips.

My uncle kept a sense of humor his whole life. Never raucous, he was truly witty. Toward the end of his life, he would still sometimes smile a joyful smile. I think it was an effort for him, and probably an unpredictable ability. But it was there, as was his slow and dignified walk to put his arm around the people he loved.

Better Outcomes

It’s very easy to reduce health outcomes to personal choices. People have done it forever. Sometimes I can see the connections, but it seems a bit intellectually lazy to reduce an individual’s well being to an equation. To know everything is to understand everything, but knowing everything is not an option. We try to know as much as we can through research and observation and by sharing our personal experiences.

What I do know is this: In the past year I started lifting weights and running on a treadmill. I can’t run without the side supports of the treadmill because my balance issues won’t allow it. I also can’t bear the heat of outdoor exertion as it shuts down my customized nervous system. But I think of what I can’t do as a guide to defining what I can. This past year I’ve lost weight, gained muscle, and reduced body fat; nothing dramatic, but it helps. It helps how I feel today and my hope is that it will shape how I feel tomorrow. I’ve defined some small things I want to be able to do for as long as possible, things that probably sound crazy to someone without a movement disorder, like being able to get up off the floor without the help of another person or something to hold. I laugh, I breathe, I run a bit. I think about my family and all that they have taught me about living a good life.

At times I also think about potato chips.

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Elizabeth Gaucher earned a Master of Fine Arts in Creative Writing from West Virginia Wesleyan College with a concentration in Creative Nonfiction. She is the founder of and editor-in-chief for the online literary magazine, Longridge Review. Follow her on Twitter, @ElizGaucher