My pain story: Part 1

So many people have tried to express the experience of my pain for me that I feel I must now fight back with an expression of my own. So here is my account of disabling pain. I’m writing it because before it happened to me, I had no idea it could happen to anyone. In all my life, I never heard about or imagined a future that looked like what mine became. Which is a shame.

Because as long as pain continues to be explained and defined only by medical professionals and ignored by disability activists who focus mainly on the ways society limits disabled people, people in pain will remain in darkness about large aspects of their own experience. 

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Day One

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 lectures. And I found that my pain would flare up but then die down again if I just waited. I didn’t have to leave and 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.

One thing I learned from today: A moderate amount of cussing is scientifically proven to dampen pain. So f*** this f****** pain!

Four Weeks at the Shirley Ryan AbilityLab

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.

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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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