#2. We'll Get Back to Books in a Minute. Right Now Let's Talk About #MillionsMissing.
Dear Friends:
We’ll get back to books in a minute—we’ll always get back to books; I promise—but today is the international day of awareness for MECFS, aka myalgic encephalomyelitis, and you’ll probably see it trending under #MillionsMissing on soc media. Negotiating space in the world and fighting for basic human and civil rights can take up a lot of time for those of us who live with chronic illnesses and, because I’ve been dealing with some of my own disability-related issues, I wasn’t able to write a big, new piece on MECFS for today, but I thought that I could pass along a selection of the pieces I have written about MECFS over the years so that you can read them and maybe even…share them?...in the hope that together we can do some small thing to help increase awareness of this terrible, debilitating illness that leaves millions of people around the world divorced from the lives they once knew and, far too many, bed-bound.
When I wrote about MECFS and Jen Brea’s amazing documentary Unrest (about her own experience with the illness) for Vogue in January 2018, it was kind of rare to see MECFS in major media or talked about in large, popular venues, and when it’s really quiet like that an illness just doesn’t get assigned the funding that’s needed for a cure. So I was thrilled when the story ran on Vogue.com and reached so many people—it was a tiny thing that I could do to bring the stories of the millions missing into the light. I heard from so many incredible people in the MECFS community. I’ll truly never forget it. It was also incredible to bear witness to the wave of patient activism happening at that time—activism that still continues today despite the fact that those who are ill really shouldn’t be tasked with being the sole advocates for this issue.
Just this week a quote from this very essay resurfaced on Twitter and popped up in my notifications when someone shared it. Reading it now, I’m struck by how much it feels like I could have written it today. Maybe it felt familiar to the reader too:
“While we tend to think of illness narratives as personal stories only, Unrest hints at a larger cultural epidemic: namely, the widespread denial or discounting of that which is other to us, a phenomenon that we see everywhere from the streets to social media to our political landscape.”
As I wrote those words, I certainly never imagined that just a few, short years later, we’d be talking about another pandemic and that MECFS would suddenly be making global news because of its connection to long-haul illness from COVID-19.
A lot has changed from when I put pen to paper to write about that other “cultural epidemic,” but one thing remains the same: I still firmly believe that we need to have more conversations; tell different stories, truer stories; make room for those narratives that help to move the needle towards progress and brings us closer to a cure. Each person’s involvement and actions do matter. Stories have power.
We need #ConversationsforCures.
My 2018 Vogue.com piece about Jen Brea’s amazing, award-winning film Unrest—which happens to be currently available on Netflix—check it out
· “The Puzzle Solver Reveals The Heart-Breaking Truths of Long-Haul Illness,” Medium
An essay about Stanford Med journalist Tracie White’s recent book The Puzzle Solver (Hachette), which centers around Whitney Dafoe, a young photographer and wonderful spirit who suffers from the most severe form of MECFS (a well-recognized and well-loved advocate for the community) and his father Dr. Ron “Superman” Davis, a brilliant and famous Stanford researcher racing to find a cure for MECFS
· “The Important Reason Why People Are Leaving Their Shoes Around Cities,” Marie Claire UK
A piece about the International Day of MECFS Awareness and #MillionsMissing
Last but not least, I wanted to leave you with this wonderful video of Rivka Solomon, an MECFS and disability advocate, who did an amazing job making something incomprehensible, well…comprehensible when she recently appeared on PBS’s Brief But Spectacular to speak about poorly understood chronic illnesses and how to advocate for people with chronic illnesses.
People like Rivka.
People like me.
Warmly and until next time,
Je
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