living with lupus, day by day, moment by moment

Le Scaphandre et Le papillon (The Diving Bell and the Butterfly)*

About seven years ago, I went to see the “Diving Bell and the Butterfly” with my husband, who was my boyfriend at the time.  It was a true biographical film depicting the life of a French-ELLE magazine editor, who suffered a massive stroke at the age of 43. The stroke left him in a “locked-in syndrome” which meant he was physically paralyzed but mentally normal. He wrote his entire memoir by blinking his left eyelid when shown the letter he wanted to communicate.

At the time I saw the movie, I thought how sad the story seemed.  Here was a man who took his life by the storm.  He had such a full life.  When he became paralyzed, his whole life, along with his body, betrayed him.  His lover, his job, his friends, etc.  As sad as it was, the story seemed so far from my reality that I tucked it away in my mind as just another great storytelling of an unfortunate life.

My reality, of course, has since changed.

While I relate to the the author on many levels now, the movie really stands out in my mind because of his description of what the locked-in syndrome felt like.  Trapped in a paralyzed body but with a clear mind, he felt like he was descending darker into the ocean, while trapped in a diving bell.  This is how I feel when I experience lupus fatigue.

Fatigue, that is debilitating fatigue, is one of the most common symptoms of lupus.  The statement that “I am so tired” does not even come close to the kind of fatigue I experience.  It is really difficult to get this through to someone who has never experienced it.  Often the response I hear is “I’m so tired too!”  If only one knew.

When I was first diagnosed with lupus and read that fatigue is one of the common symptons of lupus, I did not take it seriously. I thought I knew fatigue.  After all, in my profession as a lawyer and throughout my academic career, it was not uncommon for me to pull all nighters or near all nighters for weeks at a time.  I have known exhaustion.  Or so I thought.

I did not even recognize that the sympton I was experiencing was fatigue.  For my body to be so paralyzed that I could not even open my mouth to ask for water or to lift my head to drink the water that was left at by bedside, I could not understand what I was feeling. I did not understand it was fatigue.  I could not comprehend why in my mind, I was going over motions that I could not pysically enact.  Being so thirsty, I drank the water next to my bed a dozen times in my head, only to lay motionless with my throat perched and with tears rolling down my eyes.  I felt so trapped in a useless body. I felt paralyzed. I felt, as the author did, trapped in a diving bell.

I wish I had never learned what the author meant by his anaolgy.

The Diving Bell

*”Le Scaphandre et Le Paillpillon” by Jean Dominique Bauby

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