Take a look at these two images. Which would you say is an experience of illness? If you picked the one on the right, I've got news for you: sometimes illness looks like a unicorn in heels.
This past weekend I attended a fall fest at Lake Harriet Spiritual Community, a place that always feels like home, even though I rarely get there because of distance. I'd been excited about the event for months. As someone who historically would have rather died than get up and speak in front of people, I was somehow voluntarily going to give my first ever public presentation at the event.
Passion drives us to do crazy things like that.
I'd been reminded more than once that passion was pushing me forward. "I'm getting tired," I'd said to my husband after a couple months of promoting my new book. "But it's different when it's your passion," he'd responded. And he was right. Even as I felt spent, I still felt inspired and wanted to continue on.
What is this passion that's been driving me? I sometimes pause to self-check, caught in the fun current of unicorns. But then I remember, my passion is about so much more.
Under the surface of unicorn glitter, my driving force is of finding ways to happiness and healing, and finding ways to come back to life.
Without exaggeration I can say that, to some degree, writing Llewellyn's Little Book of Unicorns saved my life. As I wrote it, I could feel lost pieces of myself snapping back into place. It was almost scary, like hearing yourself laugh and realizing the sound has become a foreign language...of knowing that's how far you've drifted from joy. Could I trust that this was a true return of what had been lost for so long?
Apparently, I needn't have worried. So far, the taste of beauty has stuck, even while the ugly challenges have remained. The passion that drives me is a hope that I can help extend the same benefit to other people, especially to those who find themselves caught in the web of chronic illness, stuck in fear and survival mode. I've know that place all too well.
The focus of this passion seemed emphasized that morning as I woke and readied myself for the day's events. Symptoms had woven themselves into my restless dreams throughout the night, and I arose unrested and in pain.
A bit alarmed, I went through the motions of getting ready, all while wondering if I would even be able to leave the house that day. Would chronic illness strip me of the chance to participate in the festival? Would I yet again be held back from opportunity, experience, and living the way I wanted to due to inconvenient conditions?
I attended to my body as best I could, crossed my fingers, and left the house.
I did make it to the event. I was able to don my unicorn attire, give my presentation, and connect meaningfully with those who were there. "I saw you, I heard you, and I want you to know I got it," one attendee shared with me after. She, too, lived with chronic illness. "I wasn't supposed to be here today. I came, but didn't know why. It was you." We hugged for a long time, both trying not to cry.
This was that passion, coming alive.
Another attendee expressed sympathetically, "I hope you can find relief one day." I side-stepped the statement, batting it away with my own response of, "At least I can try to help other people." "Yes," she replied, "but hopefully you'll find a solution."
The thing about chronic illness is just this: it is chronic.
Symptoms may improve, worsen, hold a consistency, worsen, and improve again, sometimes in ways you can anticipate and plan for, and other times in ways that throw you for a loop. And that morning I'd unexpectedly been tossed full across the room.
It can look a certain way one moment, and all together different another. Some symptoms become familiar, while suddenly new and unfamiliar ones pop up, adding to the anxiety of it all. It's something that can be near impossible to understand until you're, unfortunately, on the inside of it.
Those who know it intimately often feel defeated when others around them seem to disbelieve they are still sick or that it can't somehow all be fixed. "You should try xyz," the healthy people say. They may see you on a good day, or in a good moment, or when you are pushing the boundaries or playing the "healthy" role quite well and declare, "But you look so good!" and "You're doing so much better!" I believe this usually comes from a good place. After all, no one wants to see a loved-one suffer. But for those living with chronic illness, it can all feel so dismissive.
An early point of my presentation that day was this: I was inspired to write about finding happiness and reconnecting with my joyful self at a time when I was coming to terms with the fact that the shadow of illness might be my lifelong companion. I had to figure out what my unicorns looked like, even amid darkness.
While I still hold out hope for resolution, in order to not make myself crazy, and in order to successfully find joy in the present instead of in some magically-healed future, I have to figure out a way to live as I am and as I might always be.
That day on the inside I felt like the picture on the right, even though on the outside I looked like the one on the left. By the end of the day I returned home, heart full, but body spent. For a time chronic illness looked like what most people think illness looks like: wrapped in soft blankets, buried under my dog, and watching Christmas movies (a fave self-soother) even though it was a week before Halloween.
In a couple of days I would emerge as a unicorn in heels. I would still be carrying that same chronic illness, trying to quietly support the extra needs of my body and mind without notice by others. And I would still be determined as ever to keep my eyes open for whatever joy I could find amidst it all.
