Written by Stephanie Land
“I have a rule,” she said, pausing to take off her sandals. “You have to be barefoot at the beach.”
I’d convinced her to come out there with me that afternoon. We’d just met in person for the first time the night before, but I instinctively knew the short trip would be good for both of us.
I walked beside her down to where the waves rolled over the wet sand, breathing in the mist, gazing at the rocky cliffs in the distance, and the feeling of salt water pulling sand out from under my feet. Children played in the rolling waves. I wanted to run in after them. I hadn’t seen the ocean in four years.
“You sure got connected with people fast,” she said, referring to who I’d befriended in the ME/CFS community, some I warmly call good friends. “How did you do that?”
“Meet people?” I said.
“Yeah,” she said. “How did you get here?”
I’d been wondering the same thing myself. When I’d brought up the idea of visiting Janet a month ago, it was during our second phone conversation. I’d called her to find out how I could help raise awareness of her son Whitney’s disease, called myalgic encephalomyelitis, after seeing a picture of him on Facebook being loaded into an ambulance. His face was hollowed and gray. He looked gravely ill. Nothing like how I remembered him when we knew each other over a decade ago.
“Well,” I said. “I’m pretty gregarious.”
Truth was I didn’t really know. After finding out about Whitney’s current condition, I just got pulled in, like that sand from under my feet. I’d gone from knowing almost nothing about chronic fatigue syndrome to walking into Whitney’s house way past dark and seeing his father, Ron Davis, standing in the kitchen. He smiled so broadly at me I hugged him.
My first response to seeing Whitney’s photo was shock, and guilt for not keeping in better contact with him. I hadn’t heard from him in over a year, and assumed that whenever he did have the strength to message people, he probably sent them to close friends and family. I started reading the half dozen articles written about him through national publications, learning how dire his situation had become, and went through an intense period of mourning him. He was, somehow, the living dead, and barely surviving.
I downloaded the documentary Forgotten Plague and cried at the sight of Whitney, bent over in his bed, with a sunbeam lighting up the top of his head. I stayed up countless nights reading articles, learning how many this disease affected, and how little it was understood or researched.
The next day I posted in the Facebook group for Whitney. I said I’m a published writer, and work as a freelancer. “What can I do to help?” I wrote. Within a week, I called Janet on the phone.
I started posting about Whitney’s story on Facebook, and in a writing group I’m a part of. Through those, friends connected me with Julie Rehmeyer, Brian Vastag, and Justin Reilly. I’d sent Ryan Prior a friend request, which he’d accepted, and a couple of weeks later got up the nerve to send him a message. We set up a phone meeting and ended up talking for hours.
I tried to explain all of this to Janet, and couldn’t. I didn’t know how this had all happened, other than a deep love for Whitney and fighting for justice for a severely disadvantaged population as a writer.
What has amazed me the most about the ME/CFS community is that urgency to bring you into the fold. Getting involved was purely selfish at the beginning—I just wanted to help Whitney. But with every conversation the momentum of that action grew to something so big I couldn’t fathom how far my words would reach, and how much they’d affect people who suffered from the disease in different ways. I never expected the connections to run so deep, and happen almost instantaneously.
I tell people it’s a writer’s dream of a story—figuring out how to write about something in such a novel way that people are forced to pay attention. But finding a platform to publish stories through proved to be difficult, and I got in the habit of hounding editors. What had started as a hopeful small stone thrown into a pond, creating a large ripple, grew into handfuls of rocks broadcasted across a lake, then an ocean, hoping to make a mark on the surface.
Janet and I paused where the rocks and sand met the waves, looking out at the ocean. I watched the waves pummel the rock wall, ran my hand over the smooth surface, feeling how worn down it was. Janet ran over to the corner of a large rock wall to stand on a rock that was uncovered for a few seconds before the next wave covered it. I stood back while she did, smiling at her giggling as she walked back to me. Sometimes you don’t necessarily need a reason, or knowing how things happened to get you where you are, you just need to go where you’re pulled. Where you’re needed. And hold on for the beautiful ride that is connecting with other human beings.