About a month ago I was rushing through the yard and came across a butterfly slowly spreading it's wings open ... closed ... gently open, those delicate yellow and black painted wings ... closed now, and open again ... all while it sat on a pile of shit.
I stood caught in my tracks, staring, confused at first because butterflies are supposed to be on flowers. Then I burst out laughing. It was the best metaphor I think I've ever heard or seen.
This is life, one big, huge, stinking mess. Now go out into it all and look for as much beauty as you can possibly find.
This was the exclamation point to the end of what was a very long roller-coaster kind of year. While I can't believe the year went as quickly as it did, I also equally can't believe it hasn't been TEN years instead of just the one. Time can be so odd that way.
A fellow Spoonie checked in with me this past week, concerned because they hadn't seen an update from me since I last posted all the long way back in November. I was surprised to realize it had been that long since I last wrote, but then again, not. I had to think about it, but I've been away for a number of reasons:
1) Self-shame and guilt with sharing. I'll admit, there's been a sense of shame and guilt at the thought of all the "TMI" and "oversharing" I went through last year, and those feelings have caused me to stay away and sort of recompose myself before I returned. Being seen has always been difficult for me. At the same time I can't stop myself from sharing raw truths, because they are so real. I needed to acknowledge that. When I and countless others have constantly been told real is not real, I needed to add my voice to setting things straight.
Yet, a part of me has wanted to go through all those past posts and delete, delete, delete, because we're taught this kind of sharing is so wrong... it's self-indulgent, attention-seeking, and inappropriate. But I wrote every post authentically and I decided to put them out into the world because they are the exact thing that I needed to find and read 20 years ago, 10 years ago, even just 2 years ago! So while I feel odd displaying so much naked truth for anyone to see, I remind myself it's worth it if even one person is able to find it and gain new understanding.
The non-self-shamed side of me knows treatment of these kinds of chronic conditions won't change for the better until more people actually know about them ... and know the real facts, not the rampant misinformation. So, I continue to share, but I've needed some "rebuild" time to recover from that shaming voice and allow for quiet germination of new creative pursuits and inspirations.
2) Processing and recovering from the aftershock. My experiences threw me into a bit of an early mid-life crisis. I wanted to throw my life away: my house, my job, relationships, hobbies... It's a hard thing to explain, but while I knew I wasn't physically dying, I felt to my core that I was dying. My life was this strangely foreign and unraveling thing. It was not mine.
I needed to be lost on my own (in the good company of my therapist) for a while. I'm now out of those dark woods, but am still recovering from the aftershock. I've taken things at a slow pace this year. Whether this means keeping my calendar low-key, writing for just myself, going to talk therapy or pain management support group, or just floating in the pool under the sunshine with my hubs, I'm trying to learn how to be "healthy" even when there is an unending sense of "disease." Some days I succeed at this more than others, but I'm still learning.
3) "Chronic" sounds like a broken record. The nature of chronic illness means it doesn't usually end in a clean "recovery" and that wasn't what I wanted to hear myself talking about. If I shared more here, ideally I wanted it to be about...recovery. But I haven't felt like I've made it there. That doesn't mean it's not worth talking about, it's just that I was disheartened to the point of silence.
I can gratefully say that both of my 2017 surgeries resulted in certain levels of success that I am so thankful for. But it's amazing how the laundry list of remaining chronic symptoms and issues can still drag me so far down. I just didn't want to examine it more than I already tend to as I go about my days. At least not yet.
4) I've been on the search for unicorns. After spending so much focus on knowing as much as possible about the facts of darkness (i.e. disease), I eventually saw that the pendulum needed to swing back into light. I needed to find my unicorns.
I needed to figure out once again what made me vibrantly happy. What inspires me to the point of making me feel like I am expanding and vibrating? Where do I lose sense of time? What lights me up and makes me sparkle and shine? Poetry, live music, the dogpark (heaven on earth, I'm telling you), and plunking around on the piano all make the list.
It can be hard to find these happy things along the way of our bumpy roads, because so often they are butterflies sitting on poo instead of flowers. But if we focus on finding beauty wherever it may be and even in spite of all the crap, maybe we'll be able to recognize when we stumble upon it anyway.
