For the victim, the experience of chronic illness is one of total catastrophe. The losses and suffering are so overwhelming that more than one’s identity is at risk. The self or “I” that is able to reflect upon or construct a life story or narrative faces obliteration. In response to the question, “Who are you?” the victim answers, “I am nothing, worthless, without hope.”
Pain, sheer, awful physical pain, can leave no room for a new story to be told or an old one reworked. Paralysis also can so dominate the field of being that the body of the victim cannot yield to the play of imagination and conceive a future despite immobility.
The dishonor that marks one’s failure to fulfill an important and obligatory role within certain communities can also lead to feelings of shame so powerful that no self in such a social order can survive. The actual or emotional suicide of the victim is often disparaged in our culture. In other ages and traditions, however, the ability to choose one’s own death when the goods of life are destroyed has been a mark of virtue rather than a fault.
A friend created a story for herself that enabled her to get through many years in which she had little opportunity to enjoy her anticipated pleasures. She worked hard for most of her adult years, raising children and then helping out to make money for the family. It was not easy, but she didn’t feel sorry for herself because she knew the life she wanted when she didn’t have to work so hard anymore. She saw herself gardening and taking watercolor lessons.
If anyone were to ask her, “Who are you?” she would say, “I’m a gardener,” or, “I’m a painter,” because that’s who she felt she really was. She went to flower shows, read gardening magazines, and always thought about how she’d love to paint the flowers she grew. When she’d practice by closing her eyes and moving her hands with an invisible paintbrush, she could see the colors of the blooms and leaves as if they were real. Meanwhile, she had to work as a secretary until she had a chance to be the “real me.” Now she has the opportunity to become the gardener she always dreamed she was and the talent, the income, and the leisure to satisfy her wish to cultivate beauty.
In the last five years, however, I see her ill with Parkinson’s and unwilling to spend any time doing what she dreamed she would most enjoy. “I’m not a gardener anymore,” she says. “I was once, but now I can’t even poke a few holes in the ground to put in a tray of annuals. I’m just someone who’s sick with nothing to do. I’d feel like I was not being honest if I thought of myself as a gardener.” She feels like a flower past its bloom.
This lovely lady recalls that when she was first diagnosed with her illness, she often thought of an old woman who lived on her block when she was a child. The old woman hobbled around with two canes, all bent over. She recounts that the woman often seemed angry but acknowledges that her expression may well have been the mask of her disease. She has a very hard time not seeing herself as a poor, crippled old lady instead of as a gardener or painter and feels as if “there are these big, empty spaces in my mind where my dreams used to be.”
My friend has lost the future she imagined she had and, as a consequence, she has lost a significant portion of her identity. Much of it was set not in the life she lived everyday, a life of toil, but in the much more pleasant years to come. had always assumed that in her middle years she would be able to be the kind of person life’s realities had not allowed her to be when she was younger. Now she feels twice robbed. It is as if a baby were snatched from her arms, a baby she had conceived, to be replaced by nothing but a sadness that fills her whole heart.