It’s day one of the program. Today is all intro sessions. Intro to physical therapy, occupational therapy, pain management, relaxation, and mindfulness. I seem to be one of the most limited people in the program, but I also seem to know the most about pain and pain management. I had pain, and spent a lot of the day lying on a soft bench with my hand over my eyes while I listened to the Lecturing. And I found that my pain would flare up but then die down again if I just waited. I didn’t have to leave go be alone, like I am used to doing.
It was an exciting energizing day. I kind of didn’t want to go home. I wish we were having a pain sleepover. the most Pleasant part of today was being around other people my age with chronic pain. Everybody is smart, intelligent, and compassionate. And maybe a little too hard on themselves. I have something in common with these people, I thought. I just wanted to hug everyone. You’re here too!? I kept thinking.
The most unpleasant part of my day was actually when I got home and started to write this post. That’s when the day’s pain hit me. Doing this every day is going to kick my ass–in a good way I hope.
What I learned from today: A moderate amount of cussing is scientifically proven to dampen pain. F*** this f****** pain!
After falling on my hip in a solo seven years ago, I developed chronic pain that slowly became persistent and severe. I gradually lost my ability to do even basic activities: sitting, standing, walking, cooking, cleaning, traveling. Even listening to conversation or being around other people for too long can cause unmanageable pain, so I have pulled away from many people I know and love. My life has changed profoundly as I adapt to disability and loss, amid getting married, switching careers, leaving Brooklyn, and raising a child. I sometimes discover a joy and gratitude that feels unshakeable; and as often, I am consumed by rage and panic. Zen Buddhism, a dedicated partner and friends, and an understanding of pain biology have been crucial supports. After years of failed treatments and no diagnosis, I have a good understanding of what’s happening to me and how to treat it. The result of my self-study is a four-week comprehensive pain treatment program I’m beginning tomorrow at the Shirley Ryan AbilityLab in Chicago. It will be a serious challenge but may lead to serious gains. I am scared, excited, hopeful, determined.
I will be writing about my experience every day on this blog. Even if I can only peck out a word or two.
Here it goes…
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 wife’s due date is August 3rd. We’re having a girl. And I’m scared.
Continue reading “I’m Going to Be a Dad (in a Few Days)”
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.
Continue reading “My Panic Song”
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.
Continue reading “Fear”
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.
Continue reading “The Man Who Lived in a Cage”
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.
Continue reading “On getting worse”
No matter how good you become at managing your pain, no matter how much work you put into loving your life, there will probably come a time when you feel absolutely awful and nothing you do lightens your mood. You have a major flare-up, or two or three, and all of life feels dark, hostile, and meaningless. It really does feel that this is the end, that all you have to look forward to is more awfulness, anger, fear, rage, despair, and/or depression, until you die. That’s the story, anyway!
Continue reading “What to do when you feel awful”