Meeting Lydia Emily

My husband and I recently attended the Port Townsend Film Festival.

This was our first live attendance since 2019 and we went in masked, vaxxed, and ready to enjoy some great films, which we’ve always looked forward to for years now.

The way we choose films isn’t particularly scientific; we each buy a 6-film pass and then review the films playing in our favorite venues (we love the Starlight Room best).

Our preferences lean toward short film curations and documentaries, though it’s hard to say why, as we like all different kinds of films, but that’s where we usually end up.

Of course, we read the program and allowed ourselves to be inspired by the descriptions there.

This year was no exception. We picked 3 short film collections and 3 documentaries, and one of those documentaries was about a mural artist with chronic illness.


As the story of The Art of Rebellion unfolded, about this muralist by the name of Lydia Emily painting these powerful messages on blank building walls in LA and Portland, the narrative became interspersed with major aspects of her personal life.

Over the course of making this movie (it took over 10 years, it turns out), the filmmaker, Libby Spears (BluPrint Films) generously invited the audience into many intimate conversations between Lydia Emily and her friends, family, and healthcare providers.

After Lydia Emily’s symptoms were described, I gradually realized… Lydia Emily has multiple sclerosis!

And then the film became more than a screening: the filmmaker and Lydia Emily herself joined the audience after the film to talk about it. What a treat!

I had questions…

Honestly, I don’t recall now the questions I had then, I just remember that before I could raise my hand, I first had to get my sh*t together because, at the end of the film, my eyes filled with tears and I felt myself choking up.

Not because I felt sorry for Lydia Emily, but because I had encountered a truthtelling film that I think everyone should see, and I was relieved that it gave such an honest, sensitive depiction of this blasted illness.

Eventually, I did take my opportunity to ask and comment.

What I do remember: I told Lydia Emily how much I appreciated her sharing her painting process (as a writer myself, I’m always fascinated with the creative processes of other artists).

And I gave kudos to the filmmaker for having the audacity to tell the real story and not just the “happy hero overcomes adversity” story that often is the way these lived experiences are framed.

(As in… those with chronic illness or disability are on a binary: we are either pathetic and need everyone’s sympathy because “woe is us” or we are superheroes who defy the odds.)

Lydia Emily chimed in then. “But really, we’re both.”

I mean, the woman uses elastic bra straps to affix her paintbrushes to her hands when her tremors are out of control. She should know. She’s still making murals and painting portraits even though her condition is progressing.

Filmmaker Spears then revealed that she has Lyme disease and envisioned the film from that very relevant vantage point, which makes total sense.

Representation for the win! It’s why my current novel in progress has a major character living with MS and the novel I’m hoping to get back to is filled with characters with neurological disorders.

Truthtelling matters

I think anyone with a chronic condition is dying for real talk about these very real conditions we live with.

In fealty to her peers, and to the honest portrayal of her subject, Ms. Spears most certainly kept things real.

The film does, in fact, veer into territory that is often left out in other human interest films.

For instance, Lydia Emily laments that “they can put a man on the moon but they don’t have a treatment for me.”

Notice she said treatment, not cure. She has progressive MS and, dear reader, here’s a not-so-fun fact: there are zero FDA-approved treatments available for progressive MS with the very recent exception of Ocrevus (but the pandemic has made the use of this drug problematic due to interference with vaccines).

The conversations included in the film about navigating our effed up healthcare system were spot on and revealing to anyone who doesn’t have to make a full-time job out of managing their chronic illness.

I am so grateful for and highly recommend this brave, well-made film… it shows what we can do even when MS or any other chronic condition strikes… what we can do when we can’t do what we originally set out to do (I hope you are following this!).

I’m always grateful for truthtellers. When people come together to share these most intimate and often invisible conflicts within themselves, an amazing community almost always rises to support them.

Where do they come from? It seems they are borne of the unrepentant ashes of diagnosis, these tiny phoenixes who arise and work to restore life and save souls.

Maybe this doesn’t happen literally—Lydia Emily is right when she says you can die from MS. So no, artists cannot help us cheat death.

But metaphorically? Hellz yeah.

Support bad-assery!

I recommend that you check out Lydia Emily’s gallery of paintings, too. Some of these were done using torn-up strips of The New York Times pasted to the canvas as a backdrop (a practice she described in the post-screening session as a kind of statement all its own).

Since that day, I’ve found Lydia Emily in Facebook and realized we have quite a few common friends. I contacted her and we connected there, and I also follow her in Instagram ( I find her authenticity, quirky humor, and determination a source of inspiration and, yes, I think Lydia Emily is a badass.

And so is Libby Spears! Check out her work, which includes other films that address:

In the last dozen years, she has also produced TV shows and short films.

I told you, she’s got the cojones to tell stories that others won’t! I’m most certainly a fan now.

Where to screen The Art of Rebellion

The most recent screenings of The Art of Rebellion happened over the last two weeks at the Portland Film Festival, but there’s an Eventive online streaming option that may still be something you can attend wherever you live. I hope you will! (And vote, if it’s up for awards!) If you can’t, I encourage you to keep your eyes peeled for future screenings and airings online or on TV, NetFlix, YouTube, etc.

For more information, or to schedule a screening: BluPrint Films.

Gratitude to BluPrint Films for the still image and poster image from the film The Art of Rebellion

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.