“Most people are going to die of something awful or take care of someone who’s dying,” mentions Westport resident Iris Greenfield.
Her husband, Jonathan, 50, has ALS. Iris is the primary caretaker for the family, including their three kids, Zach (12), Skye (10), and Josie (8).
As Iris insinuates, their situation is not unusual. However, in a world in which people use social media to craft idealized portraits of themselves, even during traumatic events, the Greenfield's authenticity and openness is unexpected and touching.
It’s mid-afternoon and Jonathan is in a motorized chair at their dining room window, overlooking the front lawn. When Iris and I enter, she turns him so he and I can see each other. She wipes the saliva from his chin, “Does the drooling bother you?” She asks me.
Nah. I’m a mom, I’ve seen worse.
“He has difficulty swallowing, he’s at that stage,” she explains. Jonathan smiles broadly, looking every bit the blue-eyed intrepid traveler and triathaloner save for his wet chin and immobility. He communicates through a tablet, scrolling through the alphabet with the slightest movement of his finger. Iris reads his notes or a computerized male voice reads them out loud.
“Everything he did was at maximum level,” Iris says after drying his face. “What he ate, how he breathed, his sports was at 150%.” She sits down and rubs her eyes. “It’s almost like he intuitively knew his life would be cut short so he tried to pack so much into it.”
Jonathan was diagnosed with ALS in December 2018. His father, Hy, died of ALS and passed the mutated C9 gene to both of his sons, Jonathan and Seth.
Jonathan had discovered Wim Hof a few years prior and promptly resolved to travel the world teaching the Method, bringing his camera to film his experiences (he was a documentarian in Germany before he started his family.) A short time later he began having foot problems, presaging his ALS diagnosis.
By the summer of 2019 he needed crutches to walk. But that didn’t stop him from traveling to Spain for a Wim Hof Method* retreat with his best friend, Rob Gutman. This retreat included breathing exercises, impossibly shivery ice baths, and a challenging hike up the side of a rocky mountain which Jonathan completed to a hail of applause from fellow retreaters.
Iris mentions this hike while Jonathan ticks off his letters. “Rob kept wanting to help out and I kept saying ‘f@ck off.’” Iris reads her husband’s words, “A New York couple overheard me and said, ‘We wanted to escape the city but it’s like we’re on the d@mn L train.’”
I laughed out loud, startled and delighted to learn that wheelchair-bound people with ALS are allowed to curse and tell funny stories.
“He loves to talk. A lot,” Iris smiles. “Sometimes people run and hide when they see him because they know they’ll get stuck in a long conversation with him.”
He laughs out loud. Sort of. He looks like he’s laughing out loud but no sound comes out.
“He has so many good friends, from his childhood he has a group of eight or nine close friends; they’re all soul brothers. They visit us, to see Jonathan. So many people want to help us.”
The air shifts. Jonathan’s face falls and he nods forward. Jungian tears. I stare at my laptop.
I ask about their GoFundMe page.
Iris glances at the ceiling, “We have issues about people feeling sorry for us. When we started a GoFundMe page for [their nonprofit] Breathe4ALS, we wanted to raise money for research and other people who need it; a lot of people go broke from medical expenses… we’re very fortunate, but the expenses for home care have increased…” her voice trails off. His head nods down.
Nevertheless, a childhood friend of Jonathan’s and Westporter Jen Perkel each set up a GoFundMe page for the Greenfields.
I had planned to interview the Greenfields for 45 minutes, maybe an hour. Two and half hours later our talk was cut short because their son, Zach, wanted to meet friends downtown. Iris tells him to wait 15 more minutes.
“Jonathan,” I ask. “How are you? How are you feeling?”
His head jolts up, his eyes dim. We wait. Iris looks at his screen, “I’m bored out of my mind,” she reads. “I’m not depressed. I’m tired of the monotony.” Jonathan adds, “I’m not desperate."
“If you could wake up tomorrow and be cured, what’s the first thing you would do?”
He pauses, reflecting on the Wim Hof Method and how much he misses it. Then finally writes, “I’d take an ice bath.”
We say good-bye. Iris is driving me home, so I sit in the passenger seat of the car while their oldest child, Zach, climbs into the back.
“What do you think of your dad?” I ask Zach while Iris drives.
“I don’t know. He’s just my dad,” Zach responds. “A lot of people want to do stuff for us. But I hope they don’t do it because they feel sorry for us,” he echoes his mother’s sentiment.
Iris brushes a a few strands of hair behind her ear. “Don’t make this a sad article,” she requests.
I promise I won’t. Because the sadness of death can never be greater than the happiness of a well-lived life.
*The Wim Hof Method uses conscious breathing, cold exposure, and patience to become “happier, healthier, and stronger.”