A Teacher Challenges Myths of Medicine and Motherhood

Kaethe #3

Kaethe has known illness since she was a child. During her senior year in high school, she was sick with a central nervous disease caused by a parasite that she picked up from feeding pigeons. This disease made it impossible for her to walk, and she had to be in the hospital and in a rehabilitation treatment center for a period of time. Kaethe learned many things from that experience. She said.

“I was very sick from November to May. That was an awful year for my parents, and yet I learned a lot. I was mostly on my own during the hospital part, even though my mother visited me every single day. I couldn’t read because my vision was impaired. I turned to my childhood abilities of being alone, using my imagination, and practicing patience.”

As an adult, Kaethe has had to repeatedly learn to navigate medical systems that do not know what is going on with her or with those she loves, and she has had to stand in opposition to the same medical establishment upon which she depends for her care. Kaethe’s trust in her own perceptions allows her to see illness from an alternative point of view, but it also allows her to challenge notions of family and the wisdom of other professionals, even under the extremely demanding situations surrounding her cancer. In her words:

“In 1989, when I was undergoing chemotherapy, I vomited every ten minutes for fourteen hours after each chemo treatment. I was beginning to have esophageal and stomach bleeding and I ended up with ulcers in every orifice. My doctors were not at all aggressive at looking for alternative protocols to manage the side effects of the chemo. Their idea was to shorten the protocol, but not to change it. Hilary was trying to find alternative medicine protocols that I could take in the hope that I would vomit less, but he hadn’t found anything. I became uncertain in June if I was going to finish the last four treatments. I felt an obligation not to die on my children, who were thirteen and ten at the time, but I wasn’t sure if I could live through the treatments. This was considered mild chemo, and yet I was ravaged by it. I got through the last four treatments, although other symptoms developed after the treatments were finished.

“I found myself with a set of symptoms that included intrusive thoughts and flashbacks that were incapacitating. I would think to myself, ‘I haven’t thought about the cancer for how long?’ and then I would look at my watch and think ‘for six seconds’ or ‘for one minute and a half.’ I did this for hours each day for weeks. My response was to exercise so hard that I would be so tired that I couldn’t have these thoughts and couldn’t tell the pain from the cancer from the aches in my body from the workout. I spoke with many psychiatrists to try to find out what was happening to me. Not one of them knew that I had Post-Traumatic Stress Disorder (PTSD). This was happening to me in 1989, and it wasn’t until 1994 that one of the criteria for a diagnosis of PTSD included symptoms similar to mine as a response to the threat of a terminal illness. Finally a psychiatrist who was a colleague gave me medicine to help me sleep, and I began to feel better until I had another round of symptoms.

“This time I went to the library and began to read about and think about mothering. I had been a mother who had not paid much attention to herself, and I began to think that I had to change this in some way, since much of my stress was related to the fear that I would die and leave my children prematurely. This played out in encounters with my children every day, when I would feel that I had to meet all their needs. I had always set limits on my children’s behavior, but not about their needs. In order to live I had to take better care of myself, and I had to rethink my ideas about good mothering. This meant to me that if a child came home and I was sick, I still was sick when they came home from school and were waiting to see me. If my chemo was at 7:00A.M., I couldn’t take them to school.”

Kaethe explored how to mother and be ill at the same time. This led her to write her book The Mother’s Voice,[1] in which she expanded the idea of “good” mothers to include mothers who included their own needs as part of the definition. Kaethe expanded this definition of mothering by including the right to tell her children more directly what she felt when discussing her illness with them. She talked about “radical listening:”—listening with openness to what has not been understood or said before in a relationship. Rather than seeing their relationships as made up of either/or choices – I am a good mother or I am a bad mother—her relationships now include dilemmas to be solved, not according to set expectations, but in different ways depending on each situation.

Even with her knowledge and strengths, Kaethe found herself dispirited during her recent bout with cancer. Although she had been able to carry on with her life when facing earlier bouts of cancer, she came up against her own limitations when she was in the midst of her latest treatments. From her point of view, the timing for this cancer couldn’t have been worse. She was diagnosed soon after Common Shock was published, and instead of going on a book tour, she had to face weeks of surgeries, uncertainty about treatment options, and a difficult course of radiation. Kaethe felt isolated and wondered how to keep going:

“The way I have thought about my illnesses before, even when I was furious about them was not, ‘Why me?’ but ‘Why not me?’ Why should I be singled out as someone so special that I wouldn’t suffer when there is so much suffering in the world? This time however, number three, I had an extremely difficult surgical course. I was not able to work for six weeks. I had never been unable to work for that long, but it was because I was changing dressings all the time. I also had to have three surgical repairs of the wound, which were very painful. I often couldn’t read. All I could do was lie down, the only position in which I was not completely in pain, and change the dressings. I had to just hang on and hang in and hope that I could learn from this pain.”

While having a hard time with these treatments, Kaethe attended a meeting on the AIDS pandemic, organized by her husband Hilary. This reminded her of how much she admired her colleagues in South Africa who work in communities devastated by HIV and AIDS. Kaethe decided to fall back on what she had learned many times: that when facing the hardest things in life, if she reached out to others the act of reaching out could sustain her. Kaethe emailed a colleague, Johanna, in South Africa and told her about her recent diagnosis and treatment. Johanna wrote back immediately sending a message of care that said that she and her colleagues were there with Kaethe. Along with this message, Johanna sent a picture of her adopted daughter who has HIV. For Kaethe, Johanna epitomizes a woman who can live a creative and dedicated life in the face of enormous hardship. With Johanna’s communication as a reminder of who she can be and what she can do, Kaethe began a new practice that took her through the radiation treatments and into a new project. It began with placing the picture of Johanna’s little girl on her stomach during one of her radiation treatments. As Kaethe received the radiation, she imagined these healing rays reaching out to this little girl. This helped Kaethe move beyond frustration and boredom to a practice of committing each of her subsequent treatments to those she wished to honor.

Johanna helped Kaethe face what was before her, not in isolation, but with a sense of concern and connection with others. With these connections, her individual suffering took on larger meaning that had what she calls a “ripple effect.” The practice of dedicating one’s difficulties to others in need expanded into the “Treatment Dedication Project.” Many people are following Kaethe’s lead and are dedicating their treatment in the names of others. The Project has led to the development of guides for cancer support staff helping patients through treatment.


[1] Kathy Weingarten, The Mother’s Voice. New York: Harcourt Brace, 1994.