When fatigue leads to compassion fatigue?
Posts tagged ‘Resilience’
What is beyond language? How do I put words to it? Do I even want to try?
A post about why I stopped talking about G-d. It came on gradually really.
These questions weren't just theoretical for me. They weren't about getting my theology right or even about you or someone else following this line of thinking too. They were personal. They were about my experience of relationship. These were the questions I faced when the attempts to save my daughters life paralyzed her vocal cords and took away her voice. Our relationship was born out of a deep silence. We learned to communicate in facial expressions and gestures. We stared at each other a lot. Every parent of an infant experiences this to some extent. I did with my first-born. The difference was when I stared at my daughter's inscrutable face, I did so with little hope that I'd ever hear her speak. A life of unknowing hung over us and informed how we would begin to get to know each other in whatever ways we could.
When I began sign language classes at the Atlanta Area School for the Deaf, I learned how much the face mattered in communicating not just tone and emphasis but varied vocabulary. For instance, the hand motions for "awake" and "Surprise" are the same. The emphasis is with the widening of the eyes and opening of the mouth. Those who speak and sign are considered "bi-modal." Spoken and written words are symbols that stand in for objects and concepts. Communicating with the body requires you to inhabit what you say. It eschews some of our detachments. What we say is no longer symbolic but corporeal. It takes muscle as well as thought. In the beginning my fingers hurt a lot. The joints would feel stiff by the end of the two hour class. When I tried to finger spell words with the letter "K," I accidentally made lewd anatomical references. When I tried to order "chicken," I ended up cursing my partner.
I began to feel helplessly misunderstood and mourned the intimate mother-daughter conversations I felt would never happen. Without a shared fluent language, I imagined I would never know the internal life of my daughter. I felt the pain of the spaces between myself and those I loved with whom my words always missed the mark. I began to wonder if like color-blindness I was seeing green when everyone else saw red, I associated the wrong meanings to words I thought I knew. I left conversations feeling more baffled than before, even when I spoke with my husband or colleagues. I wondered how stuck inside our bodies and minds, how alone we all really were.
I compared these widening gaps between me and loved ones to the black hole I felt when I tried to define G-d or Love or anything that had no obvious antecedent. And yet these shimmering concepts preoccupied that yearning space inside me. When I tried to pin anything I felt or experience down, I watched as whole words flew out of memory. I felt my feet slip underneath me where I walked. I no longer trusted gravity or felt a hard surface underneath me. We all seemed to be hovering over something bottomless. Far from creating "doubt," this reality created more of a sensation of living with faith. Losing language for something is not the same thing as losing faith. Without the ability to define, without a sense of mastery over my surroundings and thought processes, I had to face what kept me from trusting and develop that ability to trust more.
Determination is a 3 year old!
We are one month, 4 days post op. Margaret is determined to get back to normal. She is back in school and proudly telling others how she took her tube out. Eating is still slow but she can handle smooth things and cookies??? She drinks water carefully. Her speaking is improving too. Her school is ordering a microphone so she can be heard. Although when she is mad she need not raise her voice. Nothing can amplify that giant pout of hers.
We have our meeting with her teachers next week to discuss how she has met her goals.
She is also headstrong not to be out shown by her brother. Last not when James challenged, “last one upstairs is a rotten egg,” she hustled behind him saying, ” I am not a rotten egg. I am a fresh egg!”