It was at the end of a short, intense visit to Memphis in June 2012, midway through my project. I’d been traveling the country, meeting people living with multiple sclerosis, hearing their stories, meeting their families and taking their photograph in candid moments.
That weekend was brutally hot and full of challenges. But one moment in particular served as a powerful lesson and turning point for how I understood illness and disability. The whole reason for my expedition.
All of the little moments from Tennessee, plus ones from Washington, New Mexico, New Hampshire, North Carolina and more, are part of a journey beginning a year after my mother’s death from a difficult 20 years with primary progressive MS. The road is coming to an end, I sense, as I am far different from the bitter, afraid and cloistered person I was during her life. After her death, I wanted to change that; I traveled the United States to see how other people felt about disease.
Read more about my photo project here: Enlightening Photo Series Tells a Deeper Story About Life With Multiple Sclerosis.
I sat in awe of each participant’s story, drank with them, celebrated their achievements and grieved their losses all in order to destabilize how we — strangers, the media, friends, me — understand the word “chronic.” There are no heroes in illness, or Brave Battles or any other “Reader’s Digest” smarm in my travels. There’s just wonderful people and new friends. Artists, scientists, athletes, parents who are not their disease. Their stories, collected in a book of portraits, will be completed this summer, and according to her Go Fund Me page, partial proceeds from the book will go to MS research.
The moment that served as an especially powerful lesson and turning point for me is one I have not shared yet. Perhaps because I, an opinionated atheist, have been reluctant to share its overt spirituality. Maybe because it was so early, so solitary, I imagined it. But I haven’t forgotten it.
It was the taxi ride back to the Memphis airport, a 5:30 a.m. balm. My driver stepped out to get gas, his unbuttoned shirt blowing open in the hot Southern breeze. As he pumped, I listened to the radio, his preferred Sunday morning station murmuring an evangelical program. The preacher’s story lasted only the length of time it took to fill the tank. It was so early, and silent, and it seemed like nobody else was alive but the driver and me. Maybe I was the only one who heard it.
Forgive me for lacking the preacher’s eloquence, but here’s what the radio said:
Two men sat fishing. One caught a huge fish, looked at it, threw it back. Caught another, inspected, threw it back. Then he caught a third, a tiny one, and held onto it. Bewildered, the other fisherman finally asked, “What’s going on? Why keep the little one when you catch these huge, magnificent fish?” The other man replied, “Because my skillet is only 10 inches.”
The congregation went so nuts at this, it echoed in the station’s parking lot from the open window. I jumped — I’d forgotten there were real people there, and he wasn’t just some radio ghost designed just for me. But they roared and clapped with understanding.
The preacher continued over the din. We fear the power of possibilities and the weight of greatness, he said. “We don’t decide it,” he crescendoed, “we serve it.”
I mean. That is a good story.
I don’t believe in God. I do believe in people, that we may fear what makes us great, that we limit ourselves and limit others without their permission. Neither are fair. Disability, illness, chronic, are just words. They are often painful, sad, frustrating, devastating words too; I’ve seen that in my own life and in the lives of those I’ve met.
Through their stories and their friendship, I finally saw we are more than our bodies, our grief. I finally allowed my mother into my heart. Too late? I am trying to make up for lost time. And while I have this body and this mission, I will continue to try.
Serve your greatness. It’s the only choice.
Read more about Nadine Friedman-Roberts’ photo series about multiple sclerosis on NadineFriedman.com.
Clarification: A previous version of this article stated that proceeds from her book are going to the National Multiple Sclerosis Society. According to her Go Fund Me Page, partial proceeds are going to MS research.
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