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Chronic Disease Chronicle

Day 106 and Perceptual Drift

I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.

Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.

It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?

I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.

But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.

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Chronicle

Day 32 and Happiness

While yesterday was the recap of my month of long form writing. I don’t feel entirely done with the experience that is emerging from this practice. The benefits are both much more apparent (and subtle) than simply finishing what I set out to do. So to kick off month 2 and day 32 I want to share a little more about this emerging insight.

I’m just happier than when I started. I feel a sense of joy and playfulness that feels much closer to me than I thought possible. Especially in the shadow of the pandemic and political instability it feels a bit heretical to be rising up. And here I am finding childlike feelings of play in the midst of chaos. But the more I put out these feelings of happiness out into the world the more I get back from friends and family. Writing has turned into a virtuous cycle where I tap into the enchantment and wonder of my own mind. And as I share my feelings and ideas I get back comments, messages, and phone calls with people sharing their own process. It really feels wonderful. We are together making new things from our minds.

Giving each other permission to find joy and excitement in our pursuits seems crucial. If we don’t it’s all too easy to get sucked into the despair of the nothing. You may remember the nothing from childhood. It’s the growing horror that absorbs all creativity and joy in The Neverending Story.

With the narratives of despair (and the terrible realities on which they are based) can consume us like The Nothing. It’s goal was to consume the land of Fantastica. It’s power is disillusionment. And I very much wonder if this constant drumbeat of doom sends us to a similar place. Our very nature as humans who form communities, share insights, be creative, build new things together, all becomes subsumed by consuming horror after horror.

But the nothing was stopped in my life. Even a small gesture like a long form journal brings back the human spirit. We share it and others recognize it in themselves. We connect and share. And in doing so push back the encroachment of the nothing. It’s a battle we can easily win by doing something as simple as being happy sharing our thoughts with each other.