New Year’s Resolution: To Post More

My resolution is to post weekly on this blog. I am realizing just how important it is for me to share my story, to share about my life with chronic illness, about what I think and how I cope with chronic pain.

I have so many things I want to write about: what it was like being a birth partner to my wife, what caring for an infant is like, how I am attempting to recover from chronic pain, how the pain started, about the disability justice movement and how chronic illnesses fit into that, about spiritual practice, about all my wonderful and terrible coping tools for chronic pain and the moments of deep contentment I can feel when I use them, about what goes on my head all day, about self-compassion and how important it is and how I keep forgetting to do it, about what a world would look like that accommodated chronic illnesses, about how disability is treated in Kong: Skull Island, about fear and how I find relief from it, about Zen and how I am moving away from it as I find it essentially not accommodating to my disability, about joy and fear and hope and the future and realizing the future is a thought and feeling the confidence of being here in this moment.

So many things.

About the disabled artists’ residency I am doing this spring and how the heck I am going to make dance in the body I have now.

About beginning my master’s degree in disability studies.

And so many comics to write.

I don’t know how many I’ll get to. It’s a busy spring with school, residency, moving my family to Rhinecliff, NY, and having chronic pain.

But I find it so inspiring and helpful to read from someone in a position like mine. And I think it is important, if there’s nothing else I can do, to share my experiences, about how I am making sense of my life and my relationships in the face of this quite cripping disability.

Stay tuned. 🙂

My Panic Song

I have had a rough time lately. I have had frequent panic attacks, usually centered around pain. Panic attacks like this are a new thing for me, and have been very difficult to get used to. And then, in the midst of having panic attacks, I took a couple vacations that were so painful and scary that they completely overwhelmed my ability to cope. That’s why I haven’t posted in a while.

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Fear

fear

A few years ago, I had a couple weeks of intense back pain. No matter what I did, it wouldn’t go away. I convinced myself that it was a sign of something terrible, a cancer beneath my sacrum. It was terrifying. The fear lasted for a week and a half, until I read something in The Power of Now about accepting your nonacceptance. That was a new idea for me, to stop trying to accept the pain and just accept that I was resisting it.

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The Man Who Lived in a Cage

There once was a man who lived in a cage. It was quite cramped but he made the best of it. He did not know that there was anything outside of the cage. He had good days in the cage and bad days in the cage. He invented games to amuse himself. It was often uncomfortable and confining to live in the cage, but since the man did not know he was in a cage, he did not know why he felt confined.

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On getting worse

Although many of the pains I’ve had have gotten better, the two most debilitating pains, in my low back and my right knee, have gotten progressively worse. The amount of time I can stand, walk, and sit without pain have all gotten shorter, and noticing this can scare me, because it’s my inability to do these activities that is the most crippling. It can be quite difficult to live life lying down.

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