Seeking Redemption
By Greg O’Brien
“We all long for Eden, and we are constantly glimpsing it: our whole nature at its best and least corrupted, its gentlest and most human, is still soaked with the sense of exile.” —J.R.R. Tolkien, The Letters of J.R.R. Tolkein
I am soaked today in exile, as are others in this disease, as Alzheimer’s ensues—one foot on the terra firma we call reality, the other south of Eden, a realm beyond the physical. But what is reality? I always thought I knew.
When the brain—our perceived essence—begins to shut down, the spirit pursues, I’m finding. The physical now seems a veneer to me, a façade, a made-for-TV movie. On the cusp of this new reality, I seek to rid myself of this body, slowly moldering like my mind, yet I’m still conflicted with leaving family and friends behind. So I straddle in my search for Eden.
It’s the journey from the cradle to the grave.
“You’ve connected with something,” a good friend said the other day. “I wish I could go with you.”
“Not sure where I’m headed,” I responded, noting that the world beyond seems at times far more unfeigned than the world before me.
In his best-selling book, Proof of Heaven, Dr. Eben Alexander, a renowned Duke University and Harvard-trained academic neurosurgeon, made the connection on a brink of death, spending seven days deep in coma from a devastating brain infection and finding the “hyper-reality of the spiritual realm,” the place of the soul. “Our spirit is not dependent on the brain or body,” he told The New York Times in an interview. “It is eternal, and no one has one sentence worth of hard evidence that it isn’t.”
Strong words from a doctor who earlier could not reconcile his knowledge of neuroscience with any belief in Heaven, God, or the soul. Dr. Alexander, in Proof of Heaven, writes of his journey beyond this world, encountering “an angelic being who guided him into the deepest realms of super-physical existence. There he met, and spoke with, the Divine source of the universe itself.” Today Dr. Alexander believes “true health can be achieved only when we realize that God and the soul are real, and that death is not the end of personal existence but only a transition.”
Not long ago, as noted earlier, I experienced a similar near-death experience at Cape Cod Hospital’s Emergency Room, having lost close to eight pints of blood and embracing a tunnel in the search for a light at the end. Hey, I’m no Einstein, but the man once said that we “should look for what is,” and not for what we think should be.
And so I try to make sense of losing one’s mind. I am encouraged about the prospects of plumbing the depths of the soul, which, I suspect, has no color, political preference, or ideologues, just mere enlightenment. It is the search for that enlightenment that keeps me and others whole when cerebral and body functions fail. Decades ago, as a young, brash journalist, I thought I had all the answers, and that my job was to impart such wisdom of my terms, my narrative. I know now in Alzheimer’s that I clearly don’t have the answers—greater motivation now to sift the real from the imagined, a vetting for me confounded by fighting off the misperceptions and the progressions of this disease. I don’t trust my brain anymore, so I follow my heart.
I know, like all of us, I will die without the answers, but I will run the race of knowledge. In the process, I seek redemption from my enemies, family, friends, and from God, or however one defines the universe or omnipresent. I’m hoping redemption is in my quiver, as I’ve come to realize on the backside of my 60s, that I’m a bigger transgressor than most, having committed every sin imaginable, other than murder and adultery, and having been tested in both. I’m no Puritan, no altar boy, just a guy striving beyond my grasp for what is real. Alzheimer’s has brought me to this place—pursuit of truth, wherever that takes me. And I’ve come to understand that if you want redemption, you have to give it.
In the journey, I’m inspired by many, among them retired award-winning Philadelphia Inquirer sports writer Bill Lyons, who was diagnosed with Alzheimer’s several years ago. His wife, Ethel, a “warrior woman,” has battled cancer and emphysema. In the first of several columns about his battle with Alzheimer’s, Lyons in a piece headlined: “My Alzheimer’s Fight: Never, Ever Quit,” wrote:
In the winter of 2013, with the February cold bone deep, I sat in one of those cramped and sterile little examining cubicles in the Penn Memory Center and listened to the man in the white lab coat ask if I knew what Alzheimer’s was.
“Death by inches,” I said.
“And you have it,” he said.
I’m pretty sure the world stopped at that moment, and then there was a roaring sound, like a freight train barreling through my brain pan. I sat there, frozen, and I remember thinking what a crummy job this poor guy’s got.
Lyons has personalized Alzheimer’s, calling his intruder, “Al.” I’ve taken to the name myself.
At first glance, “Al” is somewhat of a submissive, disarming, forgetful sort, who over time takes on the persona of a Hannibal in Silence of the Lambs in a grisly swath of mass murders. “Al” unwittingly may be here to teach our generation something, as collectively we wrestle with losing car keys, forgetting where the car is parked, walking into rooms with no clue of why they are there, and other, far more wrenching disconnects to come. Some call it age, “Al” calls it taking no prisoners. But as Baby Boomers in their 50s, 60s, and 70s take their final laps in life, there is a sense of urgency among many to do more good on the way out, create new memories. Good often comes out of striving through imperfection.
“Al is an insidious and relentless little bastard,” writes Lyons, “a gutless coward who won’t come out and fight. Instead, he lies in ambush in my brain, and the only way I can put a face on him is to look in the mirror...I should very much like to kick Al’s ass.”
So would I, and thus have given “Al” another moniker: “Mr. Fucker.”
Lyons in his eloquent columns writes that he’s not alone in this struggle; neither are others with this taboo of a disease, thanks to faith, selfless family, friends, caregivers, doctors, researchers, and a spate of national, regional, and local support groups. But when the light in the brain goes out, as Lyons knows, often without notice, and synapse is firing wildly like a sniper, we often withdraw to the bunker, lashing out in gut anger, retreating to our inner selves, keeping our heads down below the tracer bullets.
My anger at Mr. Fucker is rising within, yet often misplaced, spraying uncontrollable ire in all directions, usually at loved ones— my wife, children, friends, and at God. I’m angry at God.
Feeling a bit like a modern-day Job, I had a WTF talk with the Almighty the other day. I was enraged!
“Do you know who I am?” I shouted at God from the heart. “Do you have a clue? You gave me clinical depression as a kid, then you gave me cancer, then Alzheimer’s; you also gave me walking pneumonia, spinal stenosis, scoliosis, and degeneration of my spine. I have no feeling now in my feet up to my shins, and my immune system is in the toilet. WTF!”
There was silence, as I pondered my outburst, knowing in my heart that I want a God of discipline, almost like legendary New England Coach Bill Belichick: “Just do your job!”
I shouted out again in primal anger to the Lord, “Do you have a freakin’ clue who I am?”
Those who live by the sword, die by the sword when calling God’s bluff. I instantly heard a brusque response in my heart from the heavens, with a salutation I use daily:
“Yes, dumbass, I know who you are. I made you! And I have you right where I want you...”
“Good then,” I said, stunned at the response, thankful I wasn’t turned into a pillar of salt. “I guess then we can move on together.”
I am flushed with the shame of my language, hurling profane epithets at God in anger that would likely raise hairs on the back of Beelzebub’s neck. I’ve been told that the Lord has big shoulders, and embraces straight talk from the heart. But still, I feel the force of Irish guilt. Alzheimer’s, I’ve come to understand, must be fought on both medical and spiritual grounds; I am humbled by such grace.
Not to take myself off the hook, profane language can be common in Alzheimer’s and other forms of dementia—an expression of gut rage and loss of filter, along with hitting, grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises, all part of the loss of control in this disease. I don’t fear at this point that I would hurt anyone. I just worry that I will hurt myself in these moments of overpowering anger, like punching though a glass window, as I’ve been tempted to do in the past. There is a medical term for uncontrollable cursing. It’s called Coprolalia, the involuntary and repetitive use of obscene language, as a symptom of mental illness or organic brain disease. I’ve sought medical assistance in this regard, and recently had a come-to-Jesus talk about anger with my pastor, about the sheer loss of control and the subsequent guilt. The cursing, the utter blasphemy, for me is like pounding a large nail into a piece of wood; you can remove the nail, but it still leaves a hole.
Pastor Doug Scalise strikes me more as a jock than a minister. Perhaps that’s why I drift toward him. At 52, he’s in good shape—thin, compact, and can move laterally with ease. A former Colby College centerfielder, a captain of his team in Waterville, Maine, he now plays in a Cape Cod wood bat league for those over 40. He can still hit the curve and the slider, instincts he brings to the pulpit. Pastors must deal with all sorts of rotations and spins. At Brewster Baptist Church on bucolic Main Street, he oversees what he calls a “big tent” church that serves the full range of political, cultural, and social perspectives—all joined together in the cohesion of faith. No one is judged here; we just worship. An ecumenical sort myself, I attend services here as well as the Catholic church down the road. But don’t tell my relatives in Dublin, for I’ll be stoned. I’ve also attended services at a synagogue and spoke once at the Unitarian Universalist Church. So I guess I’ve hit for the cycle.
Pastor Scalise’s office speaks to his love of parochial sports. He’s a home boy. To the right of his desk is an autographed Boston Celtics Larry Bird jersey; to the left of his desk is an autographed photo of Ted Williams, “the splendid splinter.” With Scalise at his desk, it’s a trinity of sorts. You can tell a lot about a person from an office. Also framed on the walls are diplomas attesting to Scalise’s spiritual side—a Master of Divinity from Boston University and Doctor of Ministry from Northern Baptist Theological Seminary in Lombard, Illinois.
Like all of us, Scalise knows his time on earth is fleeting. Recently, he had a brush with death, an often-fatal heart condition called the “Widow Maker,” 98 percent blockage of the anterior interventricular branch of the left coronary artery. He felt severe chest pains after a workout, and emergency surgery at Cape Cod Hospital saved his life. “We all have a shelf life,” he tells me, as I reach out for guidance. “We’re designed with built-in obsolescence.”
Scalise indeed knows what it’s like to walk through the Valley of Death. In fact, he has a copy of the 23rd Psalm in his office: “Though I walk through the valley of the shadow of death, I will fear no evil...”
The verse speaks to all of us.
“You can’t helicopter over the valley,” says Scalise. “You gotta walk through it. Mountain hikers know this. The valley is dark and often you can’t see around the next corner; you just have to keep walking.”
“Alone?” I ask.
Scalise, a man of with considerable wisdom, points to a photo of a flock of high-flying geese. With the juxtaposition of the photo, it appears the geese are flying past the moon. While we’re all told in life to soar like eagles, he says, geese fly even higher in flock “V” formation.
“It’s a study of teamwork,” he adds. “Geese in formation take turns in the lead, breaking the wind; others in the flock draft off the lead, with each bird honking encouragement and benefiting from the bird in front. They all take turns at the front, the hardest role. It’s an exercise in leadership. No one is left alone. And so it should be in life.”
The pastor knows why I’m here, the evangelical equivalent to a dark confession box. I’m more comfortable in the light.
I tell him about my WTF talk with God and my intense anger at the Almighty; he reminds me of Mary Stevenson’s poem, Footprints in the Sand, and fury when one perceives that the Lord is not watching: “The times when you have seen only one set of footprints, is when I carried you.”
Scalise likes to talk in parables. He tells me about a woman in his church who just died of Alzheimer’s, and that when she lost the ability to speak, she and her husband could communicate through expression in the eyes through her soul. “The heart is too deep for words,” he says.
He then tells the story of another parishioner on his deathbed, surrounded by family, praying for him. The man couldn’t speak either; eyes closed, he was unresponsive. “All of a sudden he sat up in bed, lifted up his arms as to embrace or take a hand, then fell back into his bed. He was gone, he was home.”
“Never stop speaking from the heart,” Scalise tell me. “When the body weakens with disease, the heart—the soul—grows stronger. It survives for eternity.”
I’m assuming now that Pastor Scalise is trying to distract from my anger, assuage me, or buck me up from my deep-seated guilt of fracturing the Third Commandment. But he’s not going there yet. He tells another story; this one about the classic Jimmy Stewart movie It’s A Wonderful Life. “In the movie,” he says, “there’s a little framed piece on the wall in George Bailey’s office in the Bailey Brother’s Building and Loan. Most people never see it. Director and producer Frank Capra cut to the framed piece twice, just for a few seconds. It read: ‘All that you can take with you is that which you have given away.’”
I press the issue with him, questions anyone in the early stages of Alzheimer’s would ask. I tell him about terrifying ongoing dreams where I’m in combat or fighting off an evil presence. “I had a tough one last night,” I tell my pastor, noting the dream is reoccurring. “Someone, or some evil entity, was trying to break in the front door of the house, and cracked the door open; I kept pushing back, yet the satanic apparition was able to float through the door. Scary confrontation. I kept swinging at the apparition, which laughed at me, and looked straight into my soul. I didn’t back down, but it deeply scared me. My two boys were in the room. The apparition disappeared.
“What’s happening to me, why am I so angry, and what do I give away? I got nothing now.” I ask.
“You have a right to be angry,” he tells me. “It’s okay to be angry at God. The book of Psalms is filled with such raw emotion, asking the Lord to ‘rouse thyself.’ We all think God is sleeping at times. Wake up, we say, get on the job! The anger is understandable, yet misdirected in places. God, I believe, doesn’t impart disease, but the Lord will use illness to bless. In illness, we have to look for the blessing, the lesson of giving thanks and gratitude for what remains.”
He then stares at me like a pitcher backing down a baserunner, “God has work for you; it’s not your time. That will come. But not now. You have work to do!”
“So keep the faith,” says Scalise, no pampering, no feeling sorry. He pauses, then refers to Shakespeare’s Hamlet with the ease of a college English professor. He describes a scene where Hamlet and Horatio are walking in the courtyard to see if the ghost of Hamlet’s father will appear on the castle ramparts, as soldiers have been reporting. Horatio is skeptical. Hamlet is hopeful, and presses the issue: “There are more things in Heaven and earth, Horatio, than are dreamt of in your philosophy.”
Weeks later in a sermon, Scalise reinforces the point, which has application for all who listen. He quotes from Apostle Paul’s Letter to the Romans:
“...We boast in our hope of sharing the glory of God. And not only that, but we also boast in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not disappoint us, because God’s love has been poured into our hearts through the Holy Spirit that has been given to us.”
Scalise tells the congregation it has a choice when walking through the “Darkest Valley” times of tribulations that can make or break us. “Don’t squander the opportunity,” he counsels, urging the flock to walk in endurance, hope, and love. “Grow through what you go through,” he says, offering a parable of a carrot, egg, and coffee beans in boiling water.
“A young woman,” he says, “went to her mother and told her about her life and how things were so hard for her. She didn’t know how she was going to make it, and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose. Her mother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs, and the last she placed ground coffee beans.
“She let them sit and boil without saying a word. After a while she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled some coffee into a mug. She asked her daughter, “What do you see?”
“Carrots, eggs, and coffee,” the daughter replied. Her mother brought her closer, and asked her to feel the carrots. The daughter did, and noted that they were soft. The mother asked her to take an egg and break it. After pulling off the shell, she observed the hard-boiled egg. Finally, the mother asked her to sip the coffee. The daughter smiled, as she tasted its rich aroma.
“Then the daughter asked, ‘What’s the point?’
“Her mother explained that each of the objects had faced the same adversity, boiling water, but each reacted differently. The carrot went in strong, hard, and unrelenting. However, after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after being through boiling water, its inside became hardened. The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.
“’Which are you?’ the mother asked her daughter. ‘When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?’”
Pastor Scalise looks up.
“Which one are you?” he asks the congregation.
I’m ducking in the pew, thinking he’s speaking straight at me. Pastor Scalise is dialed into me. A follow up sermon is about
trials in life and standing firm in one’s faith. “Trials come to all of us,” Scalise this morning from the pulpit, “the question is what will you do when facing a trial—what will your response, attitude and approach be?” Paraphrasing from the New Testament Letter of James, he adds, “Faith matures by what it endures.”
Scalise goes on to tell a parable about a farmer talking to a passerby about his soybean and corn crops. Rain at the time was abundant, and the fields were fertile, Scalise notes, adding that the farmer’s comments to the man were surprising.
“My crops are especially vulnerable,” he told the man. “Even a short drought could be devastating.”
Why?” the man asked.
“While frequent rain is a benefit,” the farmer said, “during such times of rain plants are not required to push roots deeper in search of water. The roots remain near the surface. And a drought would find the plants unprepared, and quickly kill them.”
Message received. My roots need pushing, I’m coming to realize.
Scalise concludes his sermon with a quote from the distinguished African-American scientist and inventor Booker T. Washington, who wrote: “No man should be pitied because every day of life he faces a hard, stubborn problem...It is the man who has no problems to solve, no hardship to face, who is to be pitied...He has nothing in his life which will strengthen and form his character, nothing to call out his latent powers and deepen and widen his hold on life.”
Faith learned the hard way, I’m finding, is the way out of exile and the path to Eden.
(Excerpt from On Pluto: Inside the Mind of Alzheimer’s, Greg O’Brien)