I rage today against the dying light. The iconic Welsh poet, Dylan Marlais Thomas, with his forceful lyricism and assailing passion, lit a flame in me years ago about the struggle to survive. Alzheimer’s is a dry wick. The spark of the disease that took many of my family members has now ignited me.
So it is with Alzheimer’s; the light ignites, then it fades.
Light is slowly starting to fade now in the wake of the fall equinox when the sun shines directly above the equator, and hours of day and night are almost equal, as the sun crosses the celestial equator, an imagined line above the Earth’s midriff, as it inches toward the shortest day of the year.
While much has been written about the “Longest Day,” June’s summer solstice, which has become a metaphor for Alzheimer’s, for many in this disease, the winter solstice is a far more powerful allegory for dementia. The darkness can be numbing; isolation warps the mind.
In months to come, the tilt of the Earth 23.5 degrees from the sun will summon the solstice when the sun is lowest in the sky, reflecting a scant nine hours and 32 minutes of daylight, a time of inner reflection for all of us.
The darkness can also be a time of greater confusion, anger, and explosive rage in this journey as “sundowning” takes over, a neurological phenomenon of Alzheimer’s. I call it the “light switch” affect in the brain: the light is on, the light is off, the light flickers, then goes dark again. This also occurs often when neurons are not connecting properly, and those of us in the disease lash out unexpectedly, often far outside the traits of our personalities—cursing, screaming, hurling insults, even throwing objects without warning, like cellphones, utensils, shoes, and other things, as I have more and more. The rage fuels paranoia like a rocket booster. Those of us on this journey, are not stupid, callous, uncaring, or intentionally unhinged; we just have a disease we can’t control. Such behavior can be initiated by loud, throbbing noises, penetrating confusion, excruciating stress, primal fear, cerebral numbness, paranoia, or all of the above.
Profane language can be common in Alzheimer’s and other forms of dementia—an expression of gut rage and loss of filter, along with inadvertent grabbing, kicking, pushing, throwing things, scratching, screaming, biting, and making strange noises, all part of the loss of control in the disease. I don’t worry, at this point, that I would hurt anyone; yet I worry that I might hurt myself in moments of overpowering anger, as I’ve been tempted to do in the past. There is a medical term for uncontrollable rage and cursing; it’s called Coprolalia, the involuntary and repetitive use of obscene language, as a symptom of organic brain disease or mental illness.
To the observing family, the caregivers, and close friends, the rage of Alzheimer’s, can be chilling, even over the simplest of things.
There was a time recently when I had misplaced my cellphone phone a score of times on a particular day. Regrettably, I started yelling, no screaming, at my loving 28-year-old son Conor; not sure why, but I just wanted to strike out. Conor instinctively understood that the rage was over memory loss, and suggested that I check the Jeep, that doctors now don’t allow me to drive any more, to see if my cellphone had fallen between the seats. I then raced outside while Conor called my phone. I could hear the cellphone ringing in the Jeep, the usual i-Phone ring, but I could not in my disease discern where the sound was coming from. My brain could not pinpoint the source of the noise; the ringing appeared randomly throughout the car—on the floor, in the front seat, in the back seat, then in the storage compartment. It was a cacophony of disconnected sounds.
Like a blind man, I began checking the floor of the car for phone vibrations. Finally, I found my lost phone; I felt the shuddering. You would think I’d be pleased. Yet I was in gut rage about losing my phone so many times that literally I needed to destroy something, or I would hurt myself. So I grabbed a coffee cup on the floor of the car, a souvenir of a memorable weekend trip to Manhattan with my daughter Colleen. It had become my favorite. In rank anger, I hurled the cup against a nearby stone wall, a perfect strike against granite, a left-handed fast ball, though I’m right handed. Rage can up your game. The cup exploded upon collision. Hearing the rage, my wife bolted out of the house, as I looked up to the sky, fist raised, and spewed expletives: “If you want me, Alzheimer’s, you can (expletive) take me now,” I yelled. Then I stormed passed my wife, no eye contact, back into the house, slamming the door behind her. Seconds later, I realized what had just happened; the light was back on in the brain. I opened the door. My wife stood there in tears, reached out her arms, and hugged me, saying, “I know it’s not you, it’s the disease!”
Sometimes in Alzheimer’s, rage translates to a loss of filter. Close friends have suggested now that I’m drinking from Larry David’s cup. David is a paradigm for loss of filter; yet the Emmy-winning comedian, actor, playwright, producer, and the genius behind Seinfeld and HBO’s Curb Your Enthusiasm is refreshing and invigorating in his brusqueness. He says what we all want to say, but often can’t, until the prefrontal cortex goes awry. The prefrontal cortex, doctors say, is the section of the brain that filters, and mostly keeping at bay inappropriate thoughts, comments, or actions.
Researchers at the University of Pennsylvania have proven that inhibiting this filter can boost unfiltered, creative thinking. While the creative genius in David can turn the switch on and off, many of us in Alzheimer’s play the role daily without premeditation or a script, a common manifestation—often blunt, rude, and crude in our language and advances, discarding social norms. Words, images, and actions that otherwise would be caught in the prefrontal cortex flow freely in the sewer of this disease. Many think of Alzheimer’s as just a loss of cognitive abilities, poor judgment, short-term memory loss, depression, disorientation, rage, and delusions at times. The “filter thing,” as we call in it our family, the personality shift, caused by changes in the brain, now has climbed into the front seat, grabbing for the wheel.
Not long after, neurons in my head misfired again; this time in public at Boston’s Logan Airport on a trip to Los Angeles with my wife—blanks in the brain due mostly to the shrill noise and seizing confusion of the terminal. I wasn’t acting “first classy,” in the moment, and was suffering from the isolation of feeling somewhat useless (as I now often do). Yet there was a time when airlines actually offered customer service: you go to the counter, flash a license, drop off a bag, and then head to the gate, maybe with some extra time for coffee and a bagel.
The ticket counters now are flush with kiosks that look like the George Lucas robot R2-D2 in Star Wars. Out of body, overwhelmed, I felt like I needed the nuclear code just to get a boarding pass. Hey, I used to be the guy – you know, the guy, the husband, the father, the guy who fixed things. I wanted to be the guy! Now I was reduced to an agitated state of disarray, no longer the star quarterback of the family. That position now fell to my wife, Mary Catherine. I was benched.
“It’s broken,” I yelled, the only thing I could think of, saying, as my wife fidgeted with R2-D2 to get the boarding pass and bag tags. But that train, to mix a metaphor, has left the station.
“See, it’s broken,” I yelled again, as the brain cells continued to short-circuit.
At airports now, one is supposed to have their quiet voice. I was raising my voice like a wave about to crash on the shoreline.
“No, it’s not,” Mary Catherine shot back, clearly stressed that I was in a launch countdown, as she tried frantically to engage R2-D2.
“The damn thing is broken!” I replied in a voice that was attracting the attention of other travelers, airline representatives, and nearby TSA.
Within seconds, a stern, stout woman approached me.
“What’s wrong,” she quipped, attempting to back me down.
Don’t go there, I thought!
“It’s broken. The damn thing is just broken.”
“No, it’s not!”
“Yes, it is…”
Stretching the definition of polite, the woman bumped my wife over to the right and worked the robot, her fingers hitting keystrokes like a master pianist.
Instantly, R2-D2 spit out boarding passes and bag tags.
With an air of smugness, she handed the bag tags to me.
In full gait confusion, I replied in a booming voice, “What the hell am I supposed to do with this?”
“You PUT them on your bags,” the woman said in a voice that drew out that second word with the greatest of sarcasm.
Challenged and not to be outdone, I stepped toward the woman, looked her directly in her eyes, violating the private zone space, and said with annunciation:
“Well, am I supposed to fly the FUCKING plane, too?”
Yikes! Emotional alarms went off. Passengers were glued to the confrontation. Other airline associates assembled like the posse. No Fly List, I was fearing, No Fly List…
My wife stepped in. She is the guy now. Horrified at what had just happened and wondering how much longer she could absorb such invectives, she explained to the woman that I have medical issues that provoke the carpet bombing of F-bombs—in the moment, the only way I can articulate the pain and fear of a light going off in my head. While all was not likely forgiven, we were allowed to proceed to the gate.
“You need to watch your husband closely,” the woman sternly told Mary Catherine. “He should be on a pitch count.”
With little left in the tank, I recently went to speak with my pastor the other day, seeking redemption from the shame of on-going constant invectives. I told my close friend, Rev. Doug Scalisi, that at times I hurl profanities at God that would likely raise hairs on the back of Beelzebub’s neck. While I’ve been told the Lord has big shoulders, and embraces straight talk from the heart, I still feel the force of Irish guilt. Alzheimer’s, I’ve now come to understand, must be fought on both medical and spiritual grounds; I am humbled by grace.
“We all have a shelf life,” Doug tells me, as I reach out for guidance. “We’re designed with built-in obsolescence.”
Scalise, who earlier faced a life-threatening heart disorder, the “widow maker,” as it’s called, 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,” he tells me. “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 in his office 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 undoubtedly knows why I’m here—the evangelical equivalent to a dark confession box.
“What’s happening to me, why am I so angry?” I ask.
“You have a right to be angry,” he tells me. “It’s okay at times 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. God doesn’t impart disease, but the Lord will use illness to bless.”
Weeks later in a sermon, Scalise reinforces the point, telling the congregation it has a choice when walking through the darkest valley. “Don’t squander the opportunity,” he counsels. “Grow through what you go through,” he says, offering a probing parable of a carrot, egg, and coffee beans in boiling water.
“A young woman,” he says, “went to her mother and told her how things were so hard for her. She wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved, another 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 daughter asked, ‘What’s the point?’
The mother, adds Scalise, 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, but 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 the 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, 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 now in the pew, thinking he’s speaking straight at me. There is great wisdom in his edifying words about adversity and redemption.
And so for now, I will not go gentle into that good night. I will in faith, as Dylan Thomas implored, “rage, rage against the dying of the light.”
(Greg O’Brien’s latest book, “On Pluto: Inside the Mind of Alzheimer’s,” has won the 2015 Beverly Hills International Book Award for Medicine, the 2015 International Book Award for Health, and was an Eric Hoffer International Book Award finalist, as well as a finalist for USA Best Book Awards. An expanded On Pluto edition will be released in November. O’Brien also is the subject of the short film, “A Place Called Pluto,” directed by award-winning filmmaker Steve James, online at livingwithalz.org. NPR’s “All Things Considered” has run a series about O’Brien’s journey, and PBS/NOVA followed the Pluto journey in its groundbreaking Alzheimer’s documentary, Can Alzheimer’s Be Stopped, among other regional and national interviews. O’Brien has served on the Alzheimer’s Association Advisory Group for Early Onset Alzheimer’s, is a patient advocate for the Cure Alzheimer’s Fund of Boston and a board member of the distinguished Washington, DC based UsAgainstAlzheimer’s. He is now working with world renowned pediatrician Dr. T. Berry Brazelton on a book about aging and the Last Touchpoint.)