Former NFL star Steve Gleason has revealed his daily ‘exorcism’ as ALS continues to wreak havoc on his body.
The former Saints’ security powerfully details how he looks to a Vietnamese Buddhist monk for inspiration during the “barbaric” routine, which includes caretakers “forcing poop out of his body into a garbage bag.”
He opens up about his journey in a new book. ‘An impossible life, living with ALS: finding peace and wisdom within a fragile existence‘. The 47-year-old has spent the last 13 years battling the neurodegenerative disease, which affects nerve cells in the brain and spinal cord.
In his moving memoir, Gleason (whose blocked punt after Hurricane Katrina has been immortalized in a statue outside the Superdome) compares his morning “workout” to his NFL pregame routine “with one big difference”: He needs the help of caregivers because “I can no longer move, speak or breathe.
In one heartbreaking scene, his young daughter Gray is “crying” in the bathroom and Gleason can’t help. He has never hugged his two children and on this day in 2022 he says: ‘I felt woefully inadequate as a parent… I felt a guilt and humiliation that destroyed my mind.’
Steve Gleason has lifted the lid on his daily ‘exorcism’ as he continues to fight ALS
The former safety enjoyed an eight-year playing career in the NFL with the New Orleans Saints.
‘An Impossible Life Living with ALS’ by Steve Gleason with Jeff Duncan premieres April 30
‘I cried, my tears matching Gray’s. While she cried audibly, my heart cried silently, deep in my chest,” she says. ‘I tried to scream from the depths of my pain. Nothing. A second effort. Silence. My emotions had no outlet.’
However, the former NFL star says, “I’ve come to really love my daily ‘exorcism,'” which “typically begins at 6 a.m. with two hours of meditation and mental training while I’m in bed.”
He explains: “During this mental training, I ‘eat’ breakfast (a syringe of medication, coffee, and a smoothie) through a feeding tube that has been surgically inserted into my stomach.”
Then, after up to half an hour of stretching, Gleason is given an enema “to stimulate bowel movement” and placed in a plastic and aluminum shower chair.
“To begin the intestinal program, one of them pushes his fist against my torso to expel the feces from my body and deposit it in a garbage bag and bucket placed under the seat,” he explains.
Her day begins with ‘a syringe of medication, coffee, and a shake through a feeding tube.’
Gleason, who was diagnosed with ALS in January 2011, with his wife and two children.
‘Until about a year ago, it was something of a poop war. I would encourage carers to push so hard around my large intestinal tract that some of them would initially be afraid to touch my spine and hurt me.’
Now, however, “it’s become more of a dance,” with Gleason communicating using eye-tracking technology: “brows up” for louder, “blink” for softer, for example.
“The bowel process can sometimes take twenty minutes to complete and is certainly difficult to witness,” he says. ‘The physical pressure on my body often makes me wince and drool. But as barbaric as it may seem… I feel reborn afterwards.’
Meanwhile, he explains, “a cough machine draws air deep into my lungs and expels mucus from my nose, my mouth, and the surgically made tracheostomy hole in my neck.”
Gleason’s blocked punt after Hurricane Katrina has been immortalized in a statue
To shower, Gleason is taken off the ventilator for about 90 seconds.
“I am at my most vulnerable during my daily shower: naked in every way, physically and emotionally,” he explains. During this time, she is confronted by a photograph of Thich Quang Duc, the monk who burned himself alive in 1963 in protest of religious persecution.
‘I marvel at his ability to remain calm as he burns to death. I find it miraculous,” says Gleason. ‘Quang Duc inspires and motivates me every morning.
‘How trained and powerful is that guy’s mind?’ If this monk can be this level-headed in the midst of flames, can I do the same in my life?