Alzheimer's, God and Grace
Bonnie A. Perry
Sunday. A group of 20 of us were sitting in the back room of O'Shaughnessy's passing eggs, potatoes and pancakes. In the midst of balancing plates and getting hot eggs into my mouth in a timely fashion I asked the fellow to my left, how it was that he and his wife made it to Chicago from Texas. I had in my mind as I asked the question an expected answer. I was thinking to myself, it must be because they have kids and grandchildren here.
Ben, in the midst of the noisy table answered my question in a quiet southern drawl. "Our daughter lives here, she and her husband and their two children." Bullseye. I had guessed the answer. I nodded and turned to pour myself some more tea. Then I heard him say something about retiring and someone being diagnosed with Alzheimer's. That's when I turned and asked, with all of my brain engaged, "Who was diagnosed with Alzheimer's?"
He said, "I was."
"Holy, expletive deleted," said I.
Ben's wife Robyn said, "Well now there's a reaction."
"How is the care here in Chicago for Alzheimer's?" I continued the conversation minus the swear words.
"Good," he said, "I haven't changed too very much in the last three years."
Later Ben's wife, Robyn said to me. He doesn't usually come out right away.
God abhors a closet; those places where we hide and lock our true selves away, usually for very real and good reasons. A number of us know all about closets. Closets: those, perhaps safe, yet confining, suffocating places where we lock away the deepest most vulnerable stories of our lives. Our sexuality, our gender, our fears, histories, addictions, our disabilities, our kid's struggles, there's shelf for all of those stories and a hanger for our vulnerabilities. We leave them all behind a closed, locked door. We then emerge, pretend, and lead lives that any Facebook algorithm would applaud. Yet those closets are small, confining and eventually that which we constructed to keep us safe is closing in around us, stealing our oxygen, and depriving us of the connections in the world that might be able to lift and carry us along.
God abhors a closet but so many of our families and friends living with dementia and or Alzheimer's disease have little choice but to move into that small world, lest they be known, pitied and dismissed.
A couple of weeks ago I heard N. R. Kleinfield the author of the stunning New York Times Piece, "Fraying at the Edges," being interviewed. Then I read his article, a profile of Geri Taylor, an accomplished hospital administrator and nurse. Three years ago Geri was diagnosed with early stages of Alzheimer's disease. She and her husband Jim Taylor agreed to be followed for several years by Mr. Kleinfield.
Kleinfield said of his article, so many of us believe we know what Alzheimer's disease is, "A withered person with a scrambled mind, memories sealed away. That is the familiar face of Alzheimer's. But there is also the waiting period."
What Kleinfield documents is Geri and Jim Taylor's decision to "live the most fulfilling days they could at what seemed the bleakest possible time...to just plunge ahead."
What I read in Geri and Jim Taylor's story, I am seeing and hearing in the ever so brief conversations I've had with newcomer's Ben and Robyn Ferguson.
Ben and Robyn like Geri and Jim Taylor are amazing advocates for people living with this disease. They graciously shared a bit of their story with me. And I am so honored that on their second week in this community they are up for having conversation with us between the 9 and 11 o'clock worship services.
Ben a clinical psychologist, in telling his story says, "Robyn had asked me over and over again to get evaluated, but I don't remember that. What I remember is that I was unable to learn a new computer program at work. That's when things started to unravel. I couldn't work if I couldn't learn. I was ashamed and scared and quit before they could ask me to leave. I had neuropsych testing, blood work, PET scans and an MRI. Then when the condescending jackass of a neurologist said, 'Alzheimer's I felt the deepest despair of my life.'"
Robyn says, "I wish I could tell you how I felt the day Ben was diagnosed, but I can't. All I remember is what Ben said as we walked out of the neurologist's office: "I know I'm a dead man walking, but I promise I'm going to do this as gracefully as I can." She says, "But the next day—that I remember. I grieved—grieved harder than any time in my life. I keened, I sobbed, I wailed—all in the shower, with a washcloth against my mouth to muffle the sound."
I am in awe of much of Robyn and Ben's story, the bit I know, but the part that stands out to me, is the part that brought them here. Robyn said, "I wanted to figure out how to bring Ben back to so we could enjoy the time we had left together. I mentioned to our daughter that I wished we could move to Chicago." Robyn said, "I was a little surprised when she said yes, 'I'll pray for it.'
One hundred days later they moved into an apartment in Uptown, around the corner from their daughter and her family.
Then after seeing it mentioned in an article he was reading in The New Yorker, Ben found the Center for Cognitive Wellness in Evanston and Dr. Sherrie All, who referred them to a support group at Northwestern. It was at Northwestern Memorial Hospital, where they met Mary O'Hara and their lives changed.
Not healed, not perfect, changed. Ben says, "I have lots of friends. I can't remember their names, but they can't remember mine either. We still manage to have a good time." As part of a Northwestern program, Ben mentors a first year medical student, helping to humanize the disease and dispel some of the stigma. Last week at the end of the year banquet, his medical student stood up and said, "I had no idea Alzheimer's could look like this. Ben beats me regularly in Chess."
Robyn and Ben are advocates for people living with the disease. Ben says, " What I know is that now I am contributing."
Not out of sight, lost in a closet.
Biblical Scholar, Amy Pauw, tells a story of one of St. Augustine more fanciful theological speculations. Augustine once said, "That God could have taught all persons individually and immediately by means of angels. Had God chosen to do so then all the wisdom that every human being needed could have been obtained in this direct and effortless way. Instead, said Augustine, 'God's plan was for us humans to learn wisdom from one another, because he says it makes, 'A way for love, which ties people together in the bonds of unity and makes souls overflow and intermingle with each other.'"
We are, concludes Amy Pauw, "All bound together in the laborious and precarious enterprise of seeking wisdom so that we will learn at the same time to love one another, "(P. xviii A Theological Commentary on the Bible and Proverbs and Ecclesiastes).
More than anything, Geri and Jim, Ben and Robyn are risking putting themselves fully in the midst of life. We who like to fix things are some times befuddled by things that are not readily cured, yet while that cure comes to be, we are called to see and be with each other—through it all--all of us—all of us-- children of God—in search of hope and wisdom.
Copyright Bonnie A. Perry, May 22, 2016