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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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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