So, the real refrain is "I am fine if Nicholas is fine. I am fine if Mum is fine". My son Nicholas has endured multiple surgeries and chronic pain. He and I have had many times when we were most certainly not fine. And I remember saying to the doctors "I want to tell something important about what I need as Nick's mother. I need you to be nice to me." I don't recall any doctor understanding the importance of my request. In order to be a good caregiver, I need exceptional kindness shown to me. At a time of crisis, I could not cope with the normal brief and sometimes brusque conversation style. I needed time and compassion from those whom I invested with the trust to achieve wellness and stability in my beloved son.
Eva Feder Kittay writes about caregivers as being 'the transparent self' - when we spend hours on end observing our charge, scanning for signs of disease progression, seeking to feel what they feel in order to imagine what might bring comfort.... we become transparent to others and especially to ourselves. This condition is necessary to giving good care. But it leads to our sense of wellness and being fine (or not) being absolutely connected to the wellness of our charge.
When I was researching Amartya Sen's capability approach and its application to the caregiving experience for my book, I came across an observation about Indian women who suffered from extreme poverty. Apparently, Sen was told by a colleague at the Delhi School of Economics that 'The Indian woman does not have an understanding of herself as an individual, she has concepts only of the family'. I found that observation fascinating, especially in the context of our society which is so driven by consumerism and individualism. I think most of us would agree that we have a concept of ourselves as individuals, but I'll bet money that all of us judge if we are 'fine' or not by how well our charge is doing. Some days, we are more transparent than others.
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