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Longing for stability.

July 29, 2012

Since my Social Security disability claim was approved, I find myself much less focused on having to prove something is wrong.  I’m able to relax more and just live my life with the limitations I have.  Still, unexpected symptom exacerbations crop up frequently enough to make me scared to simply accept my good days.  It’s like airplanes falling out of the sky every few days.  We all know these things happen, but they are supposed to be rare occurrences.  It makes you start ducking your head even when the sky is perfectly clear.  I can live with my lower stamina and my pains that come and go.  I can handle having a much lower income than I expected to.  It’s the unpredictable nature of my symptoms that causes the most difficulty.

I’ve been reading a book by Toni Bernhard, How to be Sick.  I mentioned it in a recent blog.  It was recommended to me by another woman with chronic illness I met through the WomenHeart group on Inspire.com.  It’s not strategies to make your illness better that Ms. Bernhard talks about.  She explains the Buddhist practices that help her live a good life despite being sick.  The key concept is that suffering is not the pain or discomfort of the illness itself.  Suffering comes from how we feel about being sick and what we think as a result.  For example, there are days I would like to do things I used to do like walk to a coffee shop to hang out, then walk home.  This is something I did daily when I was in grad school, but do not have reliable stamina to do now.  I might walk there and not be able to walk back, or I might get halfway and have serious chest pain.  I can look at this loss and become angry at myself for not being able to do this.  I can be jealous of people who are able to walk about where they want to.  These actions bring about the suffering I would endure.  On the other hand, if I can train myself to have compassion for my body that is doing the best it can under difficult circumstances, to be genuinely happy that others are able to do the things I no longer can, to feel lovingkindness for myself and others, my suffering will be much less.

There is a lot to say about Buddhist practices which can ease the suffering of chronic illness.  Toni Bernhard does a great job explaining these practices.  I would love to discuss this further, but am feeling too tired today.  The book is definitely worth reading.  I hope to continue using techniques like this to cope with my contracted and unpredictable world.  As Oprah would say, “Live your best life.”  We can still have a “best” life no matter what our circumstances if we let go of things we can no longer do and enjoy what we can do.

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