Radical acceptance and the hero’s journey; or, life with complex chronic illness

When I saw the clip below, I kept nodding and thinking, “You know, if you take out the high-flown language and fanboy reverence for the material… this is what we do. Every <expletive> day. It’s the only way it’s bearable to survive with this level of relentless crap.”

I often remark to fellow chronically ill people that we often have to be superheroes (a more approachable term these days than heroes), not as a matter of ego exercise, but as a matter of survival. That’s just the way it is.

We have to rise above, over and over — rise above circumstances, limitations, wants, and sometimes our very needs.

We have to forgive and forgive and forgive, often without saying a word, just to maintain relationships with less-impaired people and get on with things. How can they understand what it’s like? I wouldn’t (and don’t) wish this on my worst enemy.

They can’t really understand, and nor would I want them to have to. Therefore it’s essential to let most emotional insults and logistical assaults simply slide off. Over and over again. That’s what it takes.

So, for people who are chronically ill and could do with some validation; and for people who seek some insight into what is really required of us and why it’s so flippin’ hard; I present Cinema Therapy discussing the hero’s journey, as demonstrated by one of the most relatable characters any spoonie could wish to find — Frodo Baggins:

I enjoy the Cinema Therapy vlogs because they’re so good-natured, and these two remarkably privileged humans make such an open-hearted effort to be better humans, all the time.

 

Glorious moment

I’m enjoying my monthly latte, and it’s excellent. The café is playing songs from my youth — more precisely, Elder Brother’s youth. He got an extra share of social instincts, and the latest music — starting in the early 1970s and going through the mid-1980s, an unbeatable time for music — soaked through his walls and filled my burgeoning world from the time I was in single digits. Name any great artist of that time, and I heard them through his walls.

In the evenings, my mother would claim ownership of the air with “her” music, playing records (vinyl was it, for a long time) of gorgeous classical music and the occasional lush opera; the latest by Jacqueline DuPré; a masterclass from Yitzhak Perlman… unless she felt like practicing piano, when she’d float upon Mozart or Haydn, or dance out a buoyant dose of Scott Joplin. (She could jam on that ragtime!)

Because she adored her kids and knew how to listen to music even when it wasn’t “her” genre, she learned some Beatles, 5th Dimension, and Elton John. She even wound up getting a guitar and learning that, because this was the very height of popular American folk music and she had a social conscience as well as an ear for music. Carole King, Buffy Sainte-Marie, and Pete Seeger came into the rotation.

I never learned to choose music, because I had the astonishing luxury of growing up on the best of it chosen by those around me.

So, I’m sitting here finishing a creamy gorgeous latte that won’t make me sick; listening to the Beatles, Steely Dan, CSNY, Prince, Paul Simon, Peter Frampton, and other luscious familiar voices; in the middle of one of the sickest and sorest summers of my entire life (which is saying something)… and this, folks, this right here is a glorious moment.

In this moment, I do not hurt. I’m not struggling to stand or move. I don’t have to fight to remember something crucial or organize another superhuman effort to stretch across the sometimes-impossible gulf between a conventional physician and someone who’s been very sick for a very long time. I’ve acquired 5 new specialists so far, and, mostly, I’m desperately tired.

Right now, I’m gently suspended in a better time. It doesn’t demand anything from me; it just feels good to pay attention to it.

I told the barrista, “This is the song list of my youth.”

She said, “Aw!”

I said, “I had a great youth.”

She caught my eye and was too moved to speak for a moment.

I’m not misty-eyed. Must be allergies acting up. Even though I feel so good.