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Chronic Disease Chronicle

Day 129 and Worried About Wellness

Last week I felt like I was struggling to hold together level emotions and coherent thought. I had a lot of “feels” posts where I spent more time inspecting my interior world than I did analyzing exterior events.

When I feel energetic I can take in more information and engage in synthesis but when I’m feeling tired or otherwise am flaring from autoimmune condition I requires more mindfulness. This mindfulness lends itself to more of an inner focus. Often this brings me a sense of peace and emotional well being. Lately my case has been well controlled to the point of recovery, yet I haven’t felt as emotionally joyful about the development as I thought I would.

Then around Thursday or Friday of this week I found myself turning a bend. I was excited to think about very abstract ideas like the aesthetics of finance and how critical theory and how great works culture is colliding with Gen Z vibes.

I struggle with wanting to lean into enthusiasm though. Too many days in a row of exertion or excitement and I fear I’ll set myself back. That’s a kind of self limiting behavior that I hope I can let go. I want to feel confident in my energy but I do not want to turn myself back into workaholic habits either. This is a fear so persistent I’ve tagged eight posts in the last five months with the topic. So great is the fear that I felt some relief that I felt physically unwell today as I could blame my body instead of making the choice for myself if I wanted to be driven by energy and not recovery.

I can’t put off the mixed emotions on wellness and how I feel about working in the world. My capacity is nearly there. I’m taking on more and more. I have even plotted some of my next moves. But I’m feeling Augustine about the whole affair. Oh make well God but not quite yet!

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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.