Former NFL star Steve Gleason has lifted the lid on his daily 'exorcism' as ALS continues to wreak havoc on his body.
The ex-Saints safety powerfully details how he seeks inspiration from a Vietnamese Buddhist monk during the 'barbaric' routine, which includes caregivers 'forcing poop out of his body into a garbage bag'.
He opens up on his journey in a new book 'A Life Impossible, 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 the moving memoir, Gleason - whose blocked punt following Hurricane Katrina has been immortalized in statue outside the Superdome - compares his morning 'workout' to his pregame routine in the NFL 'with one major difference' - he needs the help of caregivers because he can 'no longer move, talk or breathe.'
In one heartbreaking scene, his young daughter Gray is 'wailing' in the bathroom, with Gleason unable to help. He has never hugged his two children and on this day in 2022, he says, 'I felt woefully inadequate as a father... I felt a guilt and humiliation that shattered my mind.'
Steve Gleason has lifted the lid on his daily 'exorcism' as he continues to battle ALS
The former safety enjoyed an eight-year playing career in the NFL with the New Orleans Saints
'A Life Impossible, Living with ALS' by Steve Gleason with Jeff Duncan is released on April 30
'I wept, my tears matching Gray's. While she wailed audibly, my heart wailed silently, deep inside my chest,' he says. 'I tried to scream from the depths of my pain. Nothing. A second effort. Silence. My emotions had no outlet.'
Nevertheless, however, the former NFL star claims to 'have grown to really love my daily "exorcism",' which 'usually begins at 6am with two hours of meditation and mental training, while in bed.'
He explains: 'During this mental training, I "eat" breakfast - a syringe of meds, 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 encourage a bowel movement' and lifted into a aluminum plastic shower chair.
'To begin the bowel program, one of them pushes his or her fist into my torso to force poop out of my body and into a garbage bag and bucket positioned below the seat,' he explains.
His day begins with 'a syringe of meds, coffee, and a smoothie through a feeding tube'
Gleason, who was diagnosed with ALS in January 2011, with his wife and two children
'Up until about a year ago, it was something like a poop war. I would encourage caregivers to push so hard around my large intestinal tract, some of them would initially be scared they were touching my spine and hurting me.'
Now, though, 'it has become more of a dance', with Gleason communicating using eye-tracking technology - 'eyebrows up' for harder, 'blinking' for softer, for example.
'The bowel process can sometimes take twenty minutes to complete and is admittedly gnarly to witness,' he says. 'The physical pressure on my body often causes me to wince and drool. But as barbaric as it looks... I feel reborn afterward.'
All the while, he explains, 'a cough machine wows air deep into my lungs and blows mucus out of my nose, my mouth, and the surgically placed tracheostomy hole in my neck.'
Gleason's blocked punt following Hurricane Katrina has been immortalized in statue
In order to shower, Gleason is taken off his ventilator for around 90 seconds.
'I'm at my most vulnerable time during the daily shower - naked in every way, physically and emotionally,' he explains. During this time, he faces a picture of Thich Quang Duc, the monk who burned himself to death in 1963 in protest at religious persecution.
'I marvel at his ability to remain calm while burning to death. I find it miraculous,' Gleason says. 'Quang Duc inspires and motivates me every morning.
'How trained and powerful is that dude's mind? If this monk can be this equanimous in the midst of flames, can I do the same in my life?
'A Life Impossible, Living with ALS: Finding Peace and Wisdom Within a Fragile Existence,' by Steve Gleason with Jeff Duncan, is published by Penguin Random House and is released on April 30
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