The last five days felt like a strange dream.
I didn’t post because of a visit from my wife and daughter. At first, their coming brought up intense pain and panic, on top of panic I was already feeling about my psychologist, who I felt was pushing me too fast. My first night together with my family was difficult. I was in a lot of pain and stress. I thought it was going to be a rough visit.
But it wasn’t. On my two days off from the program, we went to the zoo and a nature museum. We stayed out for a half-day and then a day. Even considering these trips would have been unthinkable any time in the last year. Yet I did them. I walked, I sat for entire meals (!), I talked and laughed with my wife and daughter, balanced my daughter on my lap as she pointed and guffawed at ducks, turtles, bubbles, monkeys. I spent more time with my daughter than I ever have in her life. And I just kept going. I breezed past limits that have felt fixed and solid for years. Several times, my wife and I looked at each other in amazement.
It feels like a radical shift to use all my tools and strategies for pain not to figure out how to go off alone and feel better, but to help me continue to participate. When I had pain those two days, I kept asking, “How can I move through this?” Rather than moving away from it, as I have always done. If I leave, the pain will go away, but if I stay, and work gently with it, the pain will also go away. No matter what, the pain will pass. I don’t need to completely stop for the pain to stop. That’s huge.
So now I’m not sure where I am. Was this a fluke? How do I keep these gains? I should probably just let it pass. Tomorrow is a new day.
Another day finished. Today was a real challenge.
My psychologist is really focused on my sitting tolerance, and the catastrophizing and avoidance patterns I have around it. I am listening to what everyone says but it’s exhausting. I am getting different suggestions from everyone, and feeling conflicted about how to follow my own sense of the best approach for me while also being open to other peoples’ advice.
I had a panic attack during the last period today.
Last week felt like the honeymoon week. But this week, the sh** is hitting the fan.
It’s so hard when I get angry at my health care providers. I want them to give me reasons to trust them, and sometimes they don’t, and I feel unsafe, and I get angry at them for not making me feel safe, and angry at myself for needing other people to make me feel safe. It’s a big spiral.
I am scared of what I know is happening to me. Of what stress does to a body and mind, of the avoidance and catastrophizing that I know makes it worse but that I can’t help sometimes. I don’t like it when my health care providers point out these obvious but scary things to me.
But today is over. Please God, help me find the right path. I am trying.
Today was–in the middle.
The day started out alright. I loved “Weekend Review,” where we talked about how our weekends went and how we applied (or not) things we learned in the program to our everyday lives. I had a challenging meeting with my new PT. She said some unskillful things and I was already feeling fear. Or I don’t know, did she say some unskillful things? I was just so sensitive by that point in the day: in a flare-up and scared of everything. Of course it was rough. I felt some terror and panic.
This terror is such a strange and familiar thing. Like a heavy blanket pulled over the whole world, making everything threatening: a sensation in my neck, a glass on a table, a jet flying through the clouds, lights on Lake Michigan. This is what I spend a tremendous amount of time and effort trying to avoid. Now it’s back, front and center.
If I let it run wild, it will turn into anger or self-hatred, or both. If I sit still with it, it’s just that heavy blanket.
That was today. I hope I can do this.
Today was rough.
I had no plans, and a flare-up in my neck and knee last night had me feeling fear this morning, and I just ran away from it. Too flared up to leave the apartment, and too bummed out about the flare-up to use my time alone in any useful, empowering ways. These days happen from time to time, but they take me lower than they used to.
Sometimes I can be with the fear or depression or difficult emotion, but sometimes my will to see clearly leaves me and I just mope around, listening to TV and passing the time. And the feeling of avoiding a difficult emotion leaves me very drained.
Then I just want to be more alone so I don’t share this difficulty with anyone else. So I isolate even more.
I can see this process happen so clearly, but sometimes I feel just powerless to avoid it.
I will try to be kind to myself and move on from here. Habits are hard to change.
Today I went to Windy City Gyro and ate a gyro–without my wheelchair. It involved standing to wait for the elevator and standing in the elevator, walking seven minutes to the gyro place, standing to order my gyro, and sitting in a chair for twenty-five minutes eating my gyro.
My main goal in doing this was to practice sitting for a while, which is painful and scary. And here’s what I realized: I have gotten used to lying down whenever sitting gets painful, usually after 10 minutes or so. And when I lie down, the pain goes away. So I think that to make the pain go away, I have to lie down. But I realized that if I keep sitting with the pain, the pain will also eventually go away. It will not last, no matter what. This is surprising, because I have the idea that if I keep sitting the pain will increase and increase until it’s unbearable and I have a panic attack. But that’s not what’s been happening. It has been scary to wait with the pain and see this happen, but it’s happened a few times this week, and today it’s a little bit easier.
This is big for me, because the same thing happens with standing, talking, using the computer, being around people, driving, playing with my daughter. I am always stopping to go away and lie down so the pain will go away. But maybe the pain will go away no matter what, even if I don’t leave, even if I continue the activity.
So that’s what I learned today!
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!