When Joy Is Out of Reach   Leave a comment

This morning NPR interviewed  a man with catalepsy, a cousin of narcolepsy.  During REM sleep, our bodies release a certain chemical which tells all our muscles to relax (so we don’t literally act out our dreams).  Unfortunately for a few folks, this chemical is released while they are awake, causing all their muscles to let go and thus paralyzing them.  The release mechanism for this chemical is the person’s emotional response, and for the man on NPR (Walter?), it was especially triggered by his pleasurable emotions: excitement, happiness, love.  

You can imagine the impact this would make on relationships, especially family relationships.  With his wife, think of not only sex, but kissing, holding hands, talking about the children… engaging in any emotional connection.  Walter described collapsing at a grandchild’s birthday party and on phonecalls with his children.  He spent the whole time at his daughter’s wedding propped up like a bag of potatoes against the wall.  Not just happy events themselves, but simply looking at photos of happy events can paralyze him.  There is no cure, but he takes a medication which slows the attacks, so it now comes on at a pace which he can recognize and respond to.

On the radio he spoke slowly and with no inflection in his voice, trying to speak of emotional things while blocking out the natural emotions.  His speech became slower, with more pauses, he remarked that his eyelids were feeling heavy, and then the NPR interviewer told the audience that Walter had to go lie down because he was slipping into paralysis.  The show host went on to describe how Walter could only function in life by avoiding happy occasions, turning himself more and more into an unemotional machine.  For Walter, happiness is not a good thing nor is connecting with others emotionally.  Such a heavy burden to bear through life.

My struggles in life are much smaller than his, but his experiences had an echo in my own.  Those things that once gave me pleasure in the first half of my life–whether great or moderate, exciting or fulfilling–are beyond my reach now.  I am always tired, so tired that doing something enjoyable feels like a burden rather than blessing.  When I have emotional energy I get great pleasure in so many things–reading, writing, conversing, celebrating, creating.  Those are mostly a dim memory now, and I only eke out small, brief pleasures.  The more taxed I am, the less ability I have to experience the good.

For the last few weeks, my heart is starting to recover from its latest downspike.  The telltale sign of my recovery is that imagining the joys of life feels good rather than painful.   Merely the thought of blogging, for instance, has  been lead to my heart, but imagining it these days feels more like a little red balloon… even if I still have little energy for actually doing it.


Posted February 25, 2012 by janathangrace in Personal, Story

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