People often say that those who are outspoken about their chronic illness and/or disability are “brave.”

It’s funny—I never thought about it in that way. I’m not more brave than any other person.

I JUST… AM

I’m —ironically—an outspoken person. Ironic because I’m rather introverted, with extroversion skills mastered for those times I most need to interact with gobs and gobs of people in person. (I thank bartending for the practice.)

My impulses, with chronic illness, have never been toward isolation, but toward community. I guess that is me after a lifetime of living with depression recognizing the power of belonging to a peer group for support.

As some of you know, I put that outspokenness to work as a patient advocate columnist for several organizations (primarily Health Union and BioNews Services, but also Healthline for a short time). I assisted with several sleep disorder and chronic illness communities as both a sleep medicine professional and patient, and I wrote columns for multiple sclerosis communities. It was a great way to turn a bad situation into something that gave me a reason to get out of bed in the morning (if you’re chronic, you know how hard that can be!).

After retiring from sleep medicine and patient advocacy, I jumped straight into my creative writing projects. So so many of them! Poetry books, novel manuscripts, short story collections, personal essays, even 10-minute plays!

NEW MEDIA, NEW OPPORTUNITIES

And then I went to a poetry film festival, Cadence, and my eyes were opened wide to a wonderful new medium.

A year later, my poetry film, “Look Up,” about a woman with multiple sclerosis who fights malaise to go outside and practice shinrin-yoku (forest bathing) as a foil against it, has been in three film festivals and on its way to a fourth this October in Copenhagen.

Two festivals occurred outside my region: one in Rehoboth Beach, DE and the other in Columbia, SC.

---

But one made it into the West Sound Film Festival here in my home county (Kitsap) in Washington state.

 

 

 

 

 

 

I was able to attend and see my film for the first time ever on the big screen and then waltz onto stage with all the other filmmakers and answer questions about how I made my film. It was an item I didn’t know I had in my bucket list, honestly.

And then the best thing happened: I met my audience, and they confirmed that I’d done what I’d originally intended: share the complexity of an incurable and complicated neurological autoimmune condition in a way that was emotionally accessible without being maudlin.

I mean, the last thing I want is anyone’s sympathy. There are millions of other people out in the world who are not even close to living their best lives, who are way more pathetic than I am (I say that without judgment, truly).

One of the folks I met in the audience is the author, Lya Badgley (The Worth of a Ruby, The Foreigner’s Confession). She’s also living with multiple sclerosis and we had much to compare and contrast of our shared experiences. She’s also local, which means we hope to meet for coffee in the near future and talk about all the things we have in common.

---

That’s a connection. That’s why I write.

---

 

I mean, I put myself out there because I’m looking for my people. And I keep finding them, in encounters with kindred folks like Lya, or others in social media (which creates a kind of social proof that we’re out here and will—and do, indeed—resist being shoved in the shadows).

As I drove home from the film festival (I went the back way through Tracyton), I realized that people who think the act of speaking out about one’s chronic illness is somehow courageous are probably not living with chronic illness.

Fear of getting one may be part of this equation. (And hey, it’s a legit fear: you really don’t want what I got!)

But fear while living with one? Not on the agenda; takes too much time and energy to feed that fear.

WIDENING THE CANON

To express how I live with chronic illness isn’t about being courageous, it’s about connections, to be sure. But it’s also about contributing to the widening canon of stories, poems, films, plays, novels, podcasts devoted to truthtelling for people who belong to my MS tribe.

I’ve seen this among other chronic communities, too. It’s delightful, actually, because the stories may be rough but hope is always a signature aspect at the end of every narrative.

I’ve noticed that this is also true for queer creators, too… the oeuvre of LGBTQIA+ voices and visions out there is also ever-broadening. These works are NOT JUST FOR QUEER FOLKS. I’m cishet and I’m reading one such novel right now, The Woods All Black by Lee Mandelo… so far an amazing story about a gender-bending main character in the 1920s working as a new nurse in a remote town where he may not be particularly welcome. Listen, if you want to understand the dimensionality of life as a queer person in this world (past or present or even speculating into the future), fiction may be the most effective education for achieving that.

In a sense, my voice and vision in “Look Up” feels like a frame being hung in a classic hall of mirrors, alongside other storytellers unafraid to dramatize life with chronic illness, like Lya Badgley, Jason DaSilva, Nicola Griffith, Katy Wimhurst, Jeannine Hall Gailey, Megan Jean Sovern, Caro Llewellyn, Stephen Spotswood, Sharon Baldacci, Marcel Barrena, and countless others.

Please, no sympathy. It’s an amazing way to be and feel seen. You should be so lucky.