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. 🙂
I am sorry that I haven’t posted in a while.
I have a baby daughter now, and she’s been taking up the time and space that used to go to this blog.
But I am starting again, because it’s important to me to share my experience here.
Wow, the last six months. So much has happened. I have had periods where I had so much anxiety I wanted it to kill me so it would end. And I have had periods where I felt confident, even happy, and was making gains on what I could do without pain.
I want to say more about that, but what’s so tricky for me about writing this blog is my perfectionism. It prevents me from even trying to post, because every post has to be perfect. And if I don’t have the time or space to craft a perfect post, I won’t do it at all.
So this will be an imperfect post. Rambling, meandering, unedited. Sentences maybe longer than they could be. Thoughts less connected than they could be. Paragraphs that don’t follow each other.
My baby daughter is crying and I have to go now.
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”
Walking to class one afternoon in high school, I found a giant butterfly crawling around on the sidewalk. I don’t remember what kind it was, but it was striking and colorful. It seemed disoriented, and I worried that another student might come by and step on it.
Continue reading “Hold it gently”
Before I became disabled, I’d had a limited experience with disabled people. I’d never seen a disabled person in a position of authority. My family wasn’t disabled. My friends weren’t disabled. I’d never met a disabled teacher, scout leader, parent, or mentor. I don’t think I’d ever even read a book with a disabled main character. So, understandably, becoming disabled was terrifying. As far as I could tell, my life was over.
Continue reading “My Struggle With Ableism”
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”