How did I get here? Jumping feet-first into the ME/CFS community.

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Written by Stephanie Land

Janet Dafoe and I watched our footing, making our way down to the beach.

“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?”

Photo courtesy of the Davis-Dafoe family.

Photo courtesy of the Davis-Dafoe family.

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.

8 Comments for : How did I get here? Jumping feet-first into the ME/CFS community.
    • Alice
    • April 11, 2016

    Lovely. You are doing a fine job. Thank you.

  1. What a beautiful article. I love that you care so much. And the way you have told this story – it is as if we are strolling along the beach with you and Janet…. but at the same time we are all thinking of Whitney, and those many others like him.

    Surely change must be on the way soon? Articles like this help.
    I’m in N.Ireland, I will be sharing this article now. Thank you for getting involved. xx

  2. So happy to see a healthy person who is also a writer like me, take interest in this disease. I was felled by it in 2009, lost my career as a college English and Creative Writing professor of twenty two years. I am slowly climbing out of this illness because I finally discovered my trigger was bio-toxins and mold for which there is treatment through a Shoemaker Protocol Certified physician. Many are not so lucky. I’ve been following Whitney’s story for many years now and his plight breaks my heart. So thank you for going beyond the personal and taking the time to learn about our illness and write about it. I do not claim to be cured, but I am slowly healing although some of the damage will be permanent both to brain and body due to genetic makeup and age and years of exposure. At any rate, thank you.

    • Ibutterfly34
    • April 11, 2016

    Stephanie, you are an angel. What has happened to Whitney has happened to thousands, a million, we do not know because so many are totally out of sight from the “normal world.”

    A few years ago I thought I was in remission so moved back to my home state of MA to be near family. Unfortunately, I had a major relapse, found no decent medical care, and my “family” abandoned me. I am alone, mostly housebound.

    Whatever you do to educate the public, our so-called leaders, is one step further than we are now.

    • Rivka
    • April 12, 2016

    Thank you, Stephanie, for taking up our cause! As you know by now, we desperately need health people to work with us. — Warmly, Rivka

    • Rivka
    • April 12, 2016

    Thank you, Stephanie, for taking up our cause! As you know by now, we desperately need healthy people to work with us. — Warmly, Rivka

    • Sharon Kramer
    • April 12, 2016

    It makes a difference when somebody who has not personally been impacted by a disease chooses to delve into the intricacies of the issue and write about it from a 3rd person view point. It lends credibility that others also not personally impacted should be able to understand it. Plus 3rd person writings tend to have less spit and vinegar making the writings more palatable to the general public. Thank you for doing this.

    • Jo Best
    • April 13, 2016

    Beautiful writing, Stephanie, and wonderful support. I echo ‘honoured’ this from March Updates: “We were honoured to publish a guest post by American writer Stephanie Land, and her articles have also featured this month in The Huffington Post and Your Tango. Stephanie is determined to raise awareness since finding out about the severity of her friend’s illness, Myalgic Encephalomyelitis, more commonly called Chronic Fatigue Syndrome in USA, and by most international biomedical researchers as ME/CFS.” For anyone wishing to read it, I hope it’s ok to give the link to your guest post here – http://ldifme.org/professor-ron-davis-to-present-at-11th-invest-in-me-international-me-conference-2016/

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