Week one finished! Today I stayed upright for another whole hour with my occupational therapist (OT), and it was easier than yesterday. Already, I think my sitting tolerance is expanding. Wow.
I still have a lot of work to do, but the program is feeling good and I’m making gains. Even just making it through eight hours of therapy and exercise and talking, five days a week, is a lot more than I thought I could do a week ago.
Today my psychologist helped me see how I can exaggerate my disability because I’m afraid of being seen as able-bodied, afraid of being expected to do things that I can’t. She’s helping me open up my idea of myself as disabled, as “having chronic pain.” Although the fact that I have chronic pain tends to eclipse my other identities (e.g., choreographer, performer, father, husband, friend, spiritual seeker, fun-loving creative dude), maybe it doesn’t define my whole experience, or even most of my experience. I am disabled in one sense, but in many other ways I am able-bodied, even exceptionally so. I have looked at these things before, with the help of Zen practice, but exploring them with the psychologist feels different, more vulnerable, more likely to actually shake up how I see myself.
I will chew on that this weekend, as I try going to a coffee shop and trying out my sitting tolerance in a more natural location (the OT’s idea).
See you next week! 🙂
Today my OT and psychologist helped me work through the fear, pain, and trauma that makes it hard to sit for more than 10 minutes. With their support and my courage, I ended up sitting for a whole hour. I cried with gratitude, and at the time it felt OK; my pain was intense but went away soon after. But tonight I’m having a lot of fear. Maybe in the aftermath of going into that scary place there is an echo. So I’m being gentle to myself tonight, taking it one hour at a time. I was often having intense fear even before this program, so it makes sense that fear is arising. I am OK. My body is safe, not damaged. I haven’t got a lot to lose by doing this program. Even if it fails, I won’t be much worse off than I was. I am trying something new, and it’s scary.
I am tired and sore today.
Three hours of physical therapy: one-on-one, chair yoga, and conditioning (where we go around trying to get our heart rate up on treadmills and recumbent bikes). Pain is flaring from time to time but I am gently, patiently sticking with it and the pain usually goes. Actually surprised at how well I’m doing. It’s been years since I did this much social interation and activity. Go body!
My relationship with the other patients in the program is deepening. I am getting to know more about them, their history and stories and personalities. I am so glad to be in a supportive group of folks my age. Today they all gathered around and told me how inspiring I am as an example of someone who has found some peace and freedom in pain. I almost cried. I love these people. Already! And it’s only Day 3.
Insurance hassles are making me worried about having to pull out of the program. But I’m just taking it a day at a time, trying not to “catastrophize.” That’s part of my problem. I think I know what’s best for me, what should happen in my life, what my pain means, what I need to recover, and then I behave as if those beliefs are true. But are they?
Today was a mash-up. I learned four different ways to relax: Mindfulness, chi gong, Feldenkrais, and just plain “relaxation training,” where I learned how to relax when someone next to you is aggressively snoring and someone else is shouting at you to “Let your body become loose and limp and relax into the floor!”
The best part of my day was having a sunny lunch on the grass with Becky, Henry, and James, who all began the program with me. Becky is smart and empathetic. Henry is young, friendly, and boisterous, but a little hard to read. James is big and casual and warm and passed out green tea Kit Kats for dessert. We had an exciting conversation about pain. Our experiences are so similar. And we are all really hard on ourselves. Makes me think chronic pain has a personality type.
My occupational therapist is working with me to increase my sitting tolerance and to get me to gradually ditch my wheelchair. I got confused talking to her. She says things that are perfectly reasonable, but in a way that puts me on the defensive. I am just getting to know everyone, and of course, there are people I like, people I understand, and people I don’t like and don’t understand. Yet.
Just being at the program feels like it’s challenging my nervous system to adapt to more social interaction, conversation, and activity then it was used to. That feels useful.
Plus, my doctor looks like a little boy who grew into a man overnight. When he’s thinking he shuts his eyes, crinkles his face, and hums. Which is endearing but weird.
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. 🙂