In 2005, Hurricane Katrina destroyed much of New Orleans. The Saints’ home, the Superdome, served as a shelter of last resort for 20,000 people and became an awful symbol of the city’s despair. No one was sure if the Superdome, the Saints, and New Orleans would recover.
But the city did recover. The people of New Orleans rallied around their beloved Saints. And when the Saints returned home to face the arch-rival Atlanta Falcons for their first game back in the newly restored Superdome, a non-superstar but fan-favorite player named Steve Gleason blocked a punt that led to a touchdown for the Saints.
I was in the Dome that night, with 70,000 others. I saw people with tears in their eyes as they were waiting for the doors to open, the quiet expression of how hard it had been for themselves, the Saints, and the Dome to come back. And I will never hear a louder cry of cathartic joy en masse, when Gleason blocked that punt.
Gleason described the moment: “I felt like I was in every inch of the Superdome, up in the crowd, just so happy that I could do that for the people.” He was describing the taste of oneness known as samadhi. Everyone there tasted it.
Gleason’s punt block symbolized the rebirth of New Orleans. A statue on the grounds of the Superdome enshrines that act of outrageous love. But Gleason’s following acts of outrageous love enshrine all of Health 3.0.
Three years after he ended his career in football, Gleason was diagnosed with amyotrophic lateral sclerosis (ALS), a motor neuron disease of progressively worsening muscle weakness with no known cause or cure. The average life expectancy is 2–5 years. The disease leaves a person unable to walk, talk, and eventually breathe. But, the person can still think. And feel.
The backdrop to Gleason’s diagnosis of ALS is whether the repetitive hits inherent to football itself cause degenerative neurological diseases. Causation isn’t clear, although evidence has been building.
On this question, Gleason has reflected this:
So, I have conjured my own meaning from my circumstance, if in fact football did cause my ALS. It means to me that I gave my life helping a city and a region in ruins find some hope in their struggle for rebirth. I will never regret that.
He’s gone beyond that. He learned that people with ALS could live much longer by choosing to go on a ventilator. It’s a complex decision, but one that Gleason chose for himself so that through his reach, he could advocate for other people with ALS choosing to continue purposeful lives. His efforts to ensure all ALS patients have access to assistive technology similar to what he uses led to the Steve Gleason Act of 2015. And earlier this year, he was awarded the Congressional Gold Medal, the highest civilian honor given by Congress.
This is Gleason’s work out in the world. But Gleason’s inner world shows us even better what really matters in health care.
Six weeks after his diagnosis, Gleason and his wife Michel learned that she was pregnant. Gleason’s video journals to his son, along with his struggles as ALS ravaged his body, were featured in a documentary bearing his name.
That documentary embodies every tenet of Health 3.0. Uniqueness. The personal and non-personal. Interiors and exteriors. Parts and wholes. Conscious medicine. Antifragility. Evolution in health care. Life, in the face of death.
And in heart-wrenching fashion, all of these themes are refracted through relationship. Relationship with technology. Relationship with past, present, and future. Relationship with God. Relationship with father and son. And most poignantly, relationship with wife Michel, who carries the raw caregiver burden inherent in the sacred ordinary of health care.
Gleason is an outrageous lover. And he’s committing acts of outrageous love that flow from his unique self, that only he can do. As a pro football player, brother, son, husband, father, bearer of a rare disease, activist, and savior of a city.
Michel is also an outrageous lover, committing acts of outrageous love that flow from her unique self, that only she can do. As an artist, sister, daughter, wife, mother, caregiver, and New Orleanian.
There is no cookbook for how it will all work. No prescription. Only intimacy between two outrageous lovers who have shared identity, in the context of each other’s unique selves. This is how Gafni defines intimacy. This is the only way to get through the pain, to higher ground.