Saturday, March 16, 2013

Being With Speechlessness (Aphasia)

On Monday, my mother was singing to me her favorite tune La Java Bleue over the phone. On Tuesday, she had been robbed of her ability to speak by a stroke. Aphasia, the medical term to describe what happened to my mother, comes from the ancient Greek term for 'speechlessness'. It is associated with different types of neurological disorders, and comes in several forms. My mother suffers from expressive (non fluent) aphasia, meaning she knows what she wants to say, but is unable to get the words out. Such a sudden loss is traumatic and I have had to rely on both my practice and field knowledge to be as supportive as I could for my mother. I have also had to deal with my own grief of the mother I knew who sang and spoke to me. Yet another loss down the path of Alzheimer's and very old age . . . 

Most important is to acknowledge directly to the person, what has happened, and the likely emotions associated with the communication challenges that they are experiencing. When complicated with memory loss, the person may not understand what is happening to them, and may need to be reminded. With my mother, I have been telling her that she had a stroke, and is experiencing a temporary loss of speech. I want to keep her heart in a hopeful place, and there is indeed the possibility that she may respond to speech therapy.  I empathize with the extreme frustration she shows in her facial expressions whenever she is trying to talk, and I apologize for the times when I may not understand her. This is a step caregivers often forget in their communications with aphasic persons, particularly when the aphasia has been present for a long time. I also rely on the bank of previous spoken interactions with my mother, and all the topics I know she enjoyed then and is still likely to enjoy. Next time I visit, I may also try to see if I can encourage her to communicate through art, although that door may be closed given the state of her advanced dementia. For a person suffering from strict non fluent aphasia, and with limited to moderate or no dementia, writing and art making would be two logical outlets for self-expression. Last, is falling back on two most profound forms of communication, touch, and seeing. Gazing into my mother's eyes, I shared some of the most tender and loving moments we ever had together. It is quite something to realize that it took that much, for the two of us to get there. 

Many times during the past three weeks, I have rested on the foundation of my practice. Reading Ayya Khema, stopping often to connect with the breath, sitting every morning without fail, sharing in this blog with all my noble friends, and contemplating the teachings, particularly on suffering,  impermanence, not self, and the five remembrances. I have also been reflecting on my experiences of noble silence during retreats, and how such practice can help one prepare for the possibility of speechlessness both in oneself, and in others. 

3 comments:

  1. Love and physical touch needs no speech, one of the most memorable for me in hospital with bi-lateral strokes was when my sister massaged my legs, after removing them from those hot inflatable circulation devices.

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  2. Thank you Marguerite for a wonderful description of the deeper aspects of being with speechlessness and the conversion of grief's pain into hopefulness and understanding. May your relationship with your mother grow and deepen.

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  3. I've said it before, but reading your blog reminds me of the time with my father... I never thought I would, years later, get more emotional about it today than I was at the time. I am also sure that your sharing here helps others who are on a similar path with a loved-one.
    Keep sharing, keep experiencing... much strength to you and your mother.
    Michele

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