What kinds of misperceptions do people have about the kind of illness you had?
It’s been difficult to talk about, even with a therapist, because of the word, “idiopathic.” The technical diagnosis was “Idiopathic (of unknown cause) pericarditis”. It was an unexplained enlargement of the pericardial sac around the heart so that X-rays showed it as filling the entire chest cavity. I was so weak I couldn’t stand, and had 10 months bed rest during which my limbs were so weak I had to be carried to the bathroom. Misperceptions range from, “It must not have been that important” to “there’s nothing you can do about it anyway.” I’m influenced, too, by this way of thinking, and have tended to minimize severe trauma, even when most of my life has been an attempt to overcome its effects.
What do people misunderstand about your own experience of your illness?
People misunderstand that it wasn’t a matter of just lying in bed and being taken care of by my mother, which might have been a bonding, and ultimately enriching experience. I have a friend whose mother was attentive, and who developed core values during his illness, and is better for it. The worst part of the illness was neglect. People do not comprehend that neglect in a time of life and death illness adds another layer. It creates a concentration camp in which the child waits hopelessly for the mother's return. A breath of impatience by the mother, over a wet bed for example, felt like complete rejection simply because there had been no compensatory intimacy: the playing of a board game, for example; bringing the family in for a special visit, making small gifts to remind the child that others care, or bringing me downstairs for a dose of TV with the rest of the family.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
The strength gained from this illness has been the love of children. I seem to understand how children think, know what they suffer, and have an uncanny ability to read their faces and body language to know what they feel. My career as a teacher is very likely in direct relationship to my childhood illness. I know that depth of feeling a child carries, which has allowed my to teach them to express themselves through poetry in profound ways. In addition, I have been able to use class meeting to allow children a chance to be listened to and to express themselves.
What is a question that you would like people to ask you about your experience that they rarely do?
What was it like to have to spend all that time alone?
How has your experience of life-challenging illness at an early age changed your own understanding of what it means to be an adult?
That trials and triumphs of adulthood are predicated on the wounds of childhood. Sometimes it takes only one person who truly understands to make an essential difference. For me, I say that my Aunt Pat “saved my life,” simply because she called me her favorite. I remember the times with her as the only times I felt normal and happy like I imagined other children felt. Suddenly, in her presence, I would feel joyous and fully in the present moment. To be an adult means that you have to learn to stop blaming those whose harm was unintentional, and who were good people doing the best they could under circumstances that were also quite difficult for them. Complete forgiveness is essential!