just back from Japan where I celebrated the wedding of my step-son and spent a week enjoying the gifts of Japanese grace and culture. I spent one day in Hiroshima at the Peac Park. On April 6, 1945 at 8:15 AM the U.S. dropped the A-bomb on Hiroshima which up until then had not been bombed. Everyone was out~~ opening their shops, going to work or school when the bomb fell. Anyone within 2 kilometers of the blast died almost immediately, about 100,000 people, 40,000 more died soon after. The U.S. refused to just demonstrate our power in a benign location. Instead we unleashed our power supposedly to stop war. Words fail me as I attempt to describe the destruction. The voices of surviviors and the pictures of the children must be heard and seen in order to grasp the impact of this horror.
Yet in Hiroshima I was a welcomed guest. The school children at the exhibit called out to me, smiled and even a few, reached out for my hand. Somehow I am not their enemy, and I am grateful. Their humanity has survived. I hope we as Americans can say the same.
Ellen from Japan
Wednesday, April 25, 2007
Wednesday, April 18, 2007
A Teacher's Wisdom-The Ripple Effect
Here's a final post about Kaethe's story. Her wisdom here about the "ripple effect" for good and for evil is particularly relevant in the face of the recent horror at Virginia Tech.
I'm off to Japan and hope to post stories from there. If not, I'll be back on May 3rd.
Kaethe #4
Kaethe believes that if we are willing to make the connections, even seemingly unrelated events influence one another in a ripple effect. I was particularly moved by one such series of events, which Kaethe wrote about in her book, Common Shock.
After a week of working in Kosova, Kaethe and four other American colleagues were driving from its capital, Pristina, to the airport in Skopje, Macedonia. They passed a mass grave and decided to stop the car and walk up the hill to the site, where they met a man named Izet. He was a teacher, had been part of the Kosovar Liberation Army, and knew many of the people who were buried at the site. He was overseeing the gravediggers in order to witness the burying of the dead and the building of a memorial. After telling Kaethe and the rest of her team some of the facts about the deaths during the war, Izet spoke to them of his personal feelings about the war. In Kaethe’s words:
He [Izet] told us how much easier it was for him when people actually gave him an opportunity to talk about what he was doing and offered their condolences. And then in a low voice, he confided that at times he was so stirred up that he slept in the cemetery rather than go home. “Sometimes,” he said, “I cannot bear to be away from my people.”
Kaethe said to Izet.
“We will take your story back with us to America, and I suspect someday we will turn to your example and you will help and inspire us.” She then recalled that she had her Polaroid camera in the jeep, and ran back to get it. She took three photos; two for Izet and one for her. Izet looked at the photos and said, “I will put these pictures in our museum.”
On September 22, 2001, Kaethe placed Izet's picture below her computer monitor. That day she had been speaking to a woman whose husband had lost hundreds of employees in the World Trade Center attacks. Her husband’s life was concentrated into one activity: preparing for, going to, and recovering from funerals. She was beside herself with grief and worry about her husband. Kaethe told her about Izet.
Kaethe wrote:
"How could I have possibly known the year before that Izet would become my symbol of hope, and that I would tell his story to many people? When I look at his picture, I see a fighter who has decided to mourn, not fight. I see a man who has decided to care for the dead and create a memorial to them. I imagine that his work means that he wants the cycle of revenge to end.[1]
I (Ellen) have begun to understand the layered ways in which Kaethe acknowledges the violence and suffering that we may endure or witness, the pain it causes us, and how in connection with one another we can make choices that offer us a pathway to what she describes as “doing hope together.”
Kaethe teaches me that moving from fear to action isn’t a one-way street. As we walk along this path, it is necessary to stop and listen to the stories of those who have gone before us and who teach us how to keep going. When I think of Kaethe, I remember that small actions can make a difference, that interactions that seem ordinary may hold the seeds of something larger, that focusing on the details of what needs to be done makes it possible to act even in the midst of strong emotions, that refusing to be defined by a category such as illness frees us to choose our identities, and, most important of all, that only in connection with others can we navigate life’s most difficult moments.
[1] Kaethe Weingarten, Common Shock. New York: Dutton, 2003, 205.
I'm off to Japan and hope to post stories from there. If not, I'll be back on May 3rd.
Kaethe #4
Kaethe believes that if we are willing to make the connections, even seemingly unrelated events influence one another in a ripple effect. I was particularly moved by one such series of events, which Kaethe wrote about in her book, Common Shock.
After a week of working in Kosova, Kaethe and four other American colleagues were driving from its capital, Pristina, to the airport in Skopje, Macedonia. They passed a mass grave and decided to stop the car and walk up the hill to the site, where they met a man named Izet. He was a teacher, had been part of the Kosovar Liberation Army, and knew many of the people who were buried at the site. He was overseeing the gravediggers in order to witness the burying of the dead and the building of a memorial. After telling Kaethe and the rest of her team some of the facts about the deaths during the war, Izet spoke to them of his personal feelings about the war. In Kaethe’s words:
He [Izet] told us how much easier it was for him when people actually gave him an opportunity to talk about what he was doing and offered their condolences. And then in a low voice, he confided that at times he was so stirred up that he slept in the cemetery rather than go home. “Sometimes,” he said, “I cannot bear to be away from my people.”
Kaethe said to Izet.
“We will take your story back with us to America, and I suspect someday we will turn to your example and you will help and inspire us.” She then recalled that she had her Polaroid camera in the jeep, and ran back to get it. She took three photos; two for Izet and one for her. Izet looked at the photos and said, “I will put these pictures in our museum.”
On September 22, 2001, Kaethe placed Izet's picture below her computer monitor. That day she had been speaking to a woman whose husband had lost hundreds of employees in the World Trade Center attacks. Her husband’s life was concentrated into one activity: preparing for, going to, and recovering from funerals. She was beside herself with grief and worry about her husband. Kaethe told her about Izet.
Kaethe wrote:
"How could I have possibly known the year before that Izet would become my symbol of hope, and that I would tell his story to many people? When I look at his picture, I see a fighter who has decided to mourn, not fight. I see a man who has decided to care for the dead and create a memorial to them. I imagine that his work means that he wants the cycle of revenge to end.[1]
I (Ellen) have begun to understand the layered ways in which Kaethe acknowledges the violence and suffering that we may endure or witness, the pain it causes us, and how in connection with one another we can make choices that offer us a pathway to what she describes as “doing hope together.”
Kaethe teaches me that moving from fear to action isn’t a one-way street. As we walk along this path, it is necessary to stop and listen to the stories of those who have gone before us and who teach us how to keep going. When I think of Kaethe, I remember that small actions can make a difference, that interactions that seem ordinary may hold the seeds of something larger, that focusing on the details of what needs to be done makes it possible to act even in the midst of strong emotions, that refusing to be defined by a category such as illness frees us to choose our identities, and, most important of all, that only in connection with others can we navigate life’s most difficult moments.
[1] Kaethe Weingarten, Common Shock. New York: Dutton, 2003, 205.
Sunday, April 15, 2007
My Story - Good wife Bad Wife
Ellen's Story
Kaethe’s story reminds me of my challenge to what it meant to be a “good” wife. During my late husband Ron's illness ( he had ALS) I struggled with the idea of myself as a “good” or “bad” wife. At twenty, when I said my marriage vows, I hardly considered what it meant to promise to be with Ron “in sickness and in health.” Did this mean that I was supposed to become Ron’s caregiver? How could I do this and care for my children, bring in a salary and take care of myself? I brought these questions with me to the hospital at Stanford where Ron had just been put on the ventilator.
Before taking Ron home from the hospital after he was put on the ventilator, we had several planning meetings with the staff. At the last meeting before Ron was to leave the hospital, my sister Joan and I met with a team of doctors, nurses, physical therapists, rehabilitation engineers, and a social worker who were there to put the finishing touches on our home care system. No one questioned ry whether Ron should come home. Our job was to make it happen. Others on this team may have been aware of the complexities of this decision not only for Ron, but for the entire family, but only the social worker spoke to me directly about this.
After the final meeting, he took me aside. He was the first person to ask me how I was doing. I was carrying a clipboard. My papers were askew, and I had a long list of questions that I had to get answered. I hoped this conversation wouldn’t take long.
“I’m doing okay.” I answered, in a hurry to get going with the things on my list. “I don’t have time to think about me right now. There’s just too much to do. I’m scared sometimes that this is more than I can handle, but we’re doing it.”
“Have you thought at all how this will change your relationship with Ron?” he asked.
“Not really.” I lied. “I just want to get Ron out of here and get him home. I know it will be different and hard, but I can’t think about that now. I’m focused on how we’re going to get $10,000 to pay for the wheelchair that people say we need. It has to be specially equipped so Ron‘s ventilator can be attached and it has to have a movable back so he can stay in it for a long time and work.”
I hoped that the social worker would let me get on my way, but he just kept talking.
“I know there are a million things for you to think about, but I want you to spend a little time talking with me about your role as caregiver. I don’t like to give advice, but it is my opinion that you should never become Ron’s nurse.”
Suddenly he had my attention. I listened closely as he explained that if I took responsibility for any of Ron’s nursing care, the nursing agency would no longer be legally responsible to provide a nurse for the 24-hour care that everyone agreed Ron needed. If I took on any of the nursing care, and if the agency had a problem getting someone for a shift, it would become my job to cover the time until they found someone. On the other hand, if they took on a 24-hour case and if I were not willing or able to do nursing care, they were responsible by law to have someone there all the time. The social worker warned me that many families he knew who took on the care of their father, mother, husband, wife or child quickly found themselves exhausted, ill, and in some terrible cases, responsible for a loved one’s death.
He went on to talk with me about how my nursing Ron would also affect our relationship:
“Figuring out how to continue as Ron’s wife will be hard no matter what, but if you become his nurse, the very basis of your partnership will be threatened. And it will be almost impossible for you to continue to function in your job and with your children. I know of situations where this distinction isn’t made and everything, including the nursing system, falls apart in a short time”
I felt afraid as I listened to him. He knew something that I only had
glimpsed. I wondered what was my job as wife?
I never found the answer to my question about what kind of wife I should be. Ron and I struggled for seven years over our expectations of one another. We didn’t learn to listen to one another in the ways that Kaethe described. Ron was often angry with me and disappointed in me. I was disappointed in myself. I felt overwhelmed and inadequate.
Our relationship struggles intensified the night Ron came home from the hospital. I went into our bedroom to sleep with him in his hospital bed. I had to ask the nurse, who was comfortably sitting in a large yellow chair, to leave us alone. I said I would call her if we needed her. She left reluctantly, and I climbed in next to Ron. The bed was narrow and there was not enough room for me. I nestled around Ron’s unmoving body. After he had entered the Stanford hospital, he had lost almost all movement. I pulled his arms gently around me. The cuff around his tracheotomy, where the ventilator tubes attached, needed to have the air removed so he could talk around it by using the air to force out his words. At night, the cuff was up and he couldn’t speak. I spoke to him while he listened and nodded from time to time to let me know that he was still awake. I stayed with him trying to find ways to fit on the bed. Once in my moving around I jostled his trach. His grimace let me know how much it hurt. I felt as if I was supposed to find a way to fit with him in this new bed and take care of him throughout the night. Instead, I took a mat and a blanket and slept by the French doors in the dining room. The girls were asleep upstairs in their rooms. I didn’t know where else to go.
Lying down on the mat looking out through the doors, I watched the moon. Unlike Kaethe, I did not feel connected to it as she always had, but felt afraid of the dark just as I always had. I ached with sadness for Ron. I couldn’t figure out how to care for him and how to care for myself. I slept fitfully, listening for the equipment alarms that might come from what was now Ron’s room.
During those years our different perspectives and priorities stood between us. To feel close to Ron, I needed to be able to talk to him about my sense of how we were changing. To stay alive, Ron needed to focus on what was the same, especially his internal thoughts and feelings, and he wanted me to pay attention to how we could still be the same with one another. The nurses lined up behind Ron, making it that much more difficult for us to remain close. They hadn’t known Ron before he was ill. They accepted him as he was. They thought I should be able to do the same.
On the day Ron died, we forgave one another for our disappointments and limitations. Holding hands, we cried, feeling love and grief for what we had lost. I think if I had understood more of what Kaethe understood about taking care of herself and mothering, I might have learned to be a “good wife,” but I missed the opportunity. In retelling the story now, I am more ready to forgive myself, and I realize that we were overwhelmed and did not have a Teacher like Kaethe to guide us toward change.
Kaethe’s story reminds me of my challenge to what it meant to be a “good” wife. During my late husband Ron's illness ( he had ALS) I struggled with the idea of myself as a “good” or “bad” wife. At twenty, when I said my marriage vows, I hardly considered what it meant to promise to be with Ron “in sickness and in health.” Did this mean that I was supposed to become Ron’s caregiver? How could I do this and care for my children, bring in a salary and take care of myself? I brought these questions with me to the hospital at Stanford where Ron had just been put on the ventilator.
Before taking Ron home from the hospital after he was put on the ventilator, we had several planning meetings with the staff. At the last meeting before Ron was to leave the hospital, my sister Joan and I met with a team of doctors, nurses, physical therapists, rehabilitation engineers, and a social worker who were there to put the finishing touches on our home care system. No one questioned ry whether Ron should come home. Our job was to make it happen. Others on this team may have been aware of the complexities of this decision not only for Ron, but for the entire family, but only the social worker spoke to me directly about this.
After the final meeting, he took me aside. He was the first person to ask me how I was doing. I was carrying a clipboard. My papers were askew, and I had a long list of questions that I had to get answered. I hoped this conversation wouldn’t take long.
“I’m doing okay.” I answered, in a hurry to get going with the things on my list. “I don’t have time to think about me right now. There’s just too much to do. I’m scared sometimes that this is more than I can handle, but we’re doing it.”
“Have you thought at all how this will change your relationship with Ron?” he asked.
“Not really.” I lied. “I just want to get Ron out of here and get him home. I know it will be different and hard, but I can’t think about that now. I’m focused on how we’re going to get $10,000 to pay for the wheelchair that people say we need. It has to be specially equipped so Ron‘s ventilator can be attached and it has to have a movable back so he can stay in it for a long time and work.”
I hoped that the social worker would let me get on my way, but he just kept talking.
“I know there are a million things for you to think about, but I want you to spend a little time talking with me about your role as caregiver. I don’t like to give advice, but it is my opinion that you should never become Ron’s nurse.”
Suddenly he had my attention. I listened closely as he explained that if I took responsibility for any of Ron’s nursing care, the nursing agency would no longer be legally responsible to provide a nurse for the 24-hour care that everyone agreed Ron needed. If I took on any of the nursing care, and if the agency had a problem getting someone for a shift, it would become my job to cover the time until they found someone. On the other hand, if they took on a 24-hour case and if I were not willing or able to do nursing care, they were responsible by law to have someone there all the time. The social worker warned me that many families he knew who took on the care of their father, mother, husband, wife or child quickly found themselves exhausted, ill, and in some terrible cases, responsible for a loved one’s death.
He went on to talk with me about how my nursing Ron would also affect our relationship:
“Figuring out how to continue as Ron’s wife will be hard no matter what, but if you become his nurse, the very basis of your partnership will be threatened. And it will be almost impossible for you to continue to function in your job and with your children. I know of situations where this distinction isn’t made and everything, including the nursing system, falls apart in a short time”
I felt afraid as I listened to him. He knew something that I only had
glimpsed. I wondered what was my job as wife?
I never found the answer to my question about what kind of wife I should be. Ron and I struggled for seven years over our expectations of one another. We didn’t learn to listen to one another in the ways that Kaethe described. Ron was often angry with me and disappointed in me. I was disappointed in myself. I felt overwhelmed and inadequate.
Our relationship struggles intensified the night Ron came home from the hospital. I went into our bedroom to sleep with him in his hospital bed. I had to ask the nurse, who was comfortably sitting in a large yellow chair, to leave us alone. I said I would call her if we needed her. She left reluctantly, and I climbed in next to Ron. The bed was narrow and there was not enough room for me. I nestled around Ron’s unmoving body. After he had entered the Stanford hospital, he had lost almost all movement. I pulled his arms gently around me. The cuff around his tracheotomy, where the ventilator tubes attached, needed to have the air removed so he could talk around it by using the air to force out his words. At night, the cuff was up and he couldn’t speak. I spoke to him while he listened and nodded from time to time to let me know that he was still awake. I stayed with him trying to find ways to fit on the bed. Once in my moving around I jostled his trach. His grimace let me know how much it hurt. I felt as if I was supposed to find a way to fit with him in this new bed and take care of him throughout the night. Instead, I took a mat and a blanket and slept by the French doors in the dining room. The girls were asleep upstairs in their rooms. I didn’t know where else to go.
Lying down on the mat looking out through the doors, I watched the moon. Unlike Kaethe, I did not feel connected to it as she always had, but felt afraid of the dark just as I always had. I ached with sadness for Ron. I couldn’t figure out how to care for him and how to care for myself. I slept fitfully, listening for the equipment alarms that might come from what was now Ron’s room.
During those years our different perspectives and priorities stood between us. To feel close to Ron, I needed to be able to talk to him about my sense of how we were changing. To stay alive, Ron needed to focus on what was the same, especially his internal thoughts and feelings, and he wanted me to pay attention to how we could still be the same with one another. The nurses lined up behind Ron, making it that much more difficult for us to remain close. They hadn’t known Ron before he was ill. They accepted him as he was. They thought I should be able to do the same.
On the day Ron died, we forgave one another for our disappointments and limitations. Holding hands, we cried, feeling love and grief for what we had lost. I think if I had understood more of what Kaethe understood about taking care of herself and mothering, I might have learned to be a “good wife,” but I missed the opportunity. In retelling the story now, I am more ready to forgive myself, and I realize that we were overwhelmed and did not have a Teacher like Kaethe to guide us toward change.
Tuesday, April 10, 2007
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.
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.
Thursday, April 05, 2007
Teachers: Early lessons
Kaethe #2
Ethical dilemmas in child's play
I wondered how I might apply Kaethe’s teachings to my persistent fear that if I were faced with catastrophe again, I would get stuck in my own suffering and not feel connected to others. I also remembered how Ron and our family were defined by his illness. I hoped that in getting to know Kaethe better I would find ways to address my self- doubts and would broaden my capacity to see beyond illness or whatever other catastrophes might be in my future.
I began our interviews by asking Kaethe what it was like for her growing up.
Kaethe was born in 1947 into a lower-middle-class, secular Jewish family. As a young child she lived in Brooklyn with her parents, Violet and Victor, and her older sister, Jan, as part of a large extended family. Her family had emigrated to the U.S. in the early 1900’s from Poland, Lithuania, and Hungary. Family members who had stayed behind had been caught up in the Holocaust. Like many other immigrants, Kaethe’s family resisted telling stories about their painful past, focusing on the present and on how they would make a life for themselves in the United States. Kaethe told me about her grandparents and her extended family:
“I often visited my father’s mother in her small apartment in the Bronx. During a typical visit, I would go to the butcher with my grandmother, who kept a kosher house. She did what she needed to do in her home, but without a lot of conversation about it or her earlier life in Lithuania. She worked hard for her family every day. This life was what was important to her and what she shared with me.
“Being a member of this extended family was part of the good fortune of my childhood. It created a secure childhood. When there were upheavals, I counted on the solid backbone of family. I remember one night when my parents, my sister, and I went to a play in New York City. At the end of the play, as we left the theatre, we found ourselves in the midst of an incredible snowstorm. We realized that we couldn’t get home because we lived an hour outside of the city. My grandmother and aunt still lived in the Bronx in a small apartment. I remember going to their apartment and knocking on the door. It never occurred to me that we wouldn’t be welcome. I assumed that they would be thrilled to see us, and I had no doubts that we could all sleep there. Even in an apartment with only one bedroom, there was always enough room for all of us.”
Not everything in Kaethe’s early life was as predictable as the welcome at her grandmother’s door:
“Growing up in my family, things were both as they seemed, and not as they seemed. No one really was any one way, and the family map had to be understood interaction by interaction. As a child, I navigated these inconsistencies by feeling more deeply and speaking more freely than other family members. I never fully said all that I was feeling, since what I did say pushed the family way beyond its tolerance of me, and they would get very angry with me.
“I was disturbed by what I saw as inconsistencies in ethical relations in our household. In response to this confusion, I lived inside an imagined world, which was an extremely moral and ethical place. This is what I mean by inconsistencies: Although we looked forward to getting together with my mother’s parents, and we got together with them at least twice a month, no one ever spoke about how they went at each other all the time. It was often horrible to be with them, and we were often with them. When my mother was young, my mother’s father had been verbally abusive to her and to her mother. My mother was afraid of him, and I knew it. At the same time, as a grandfather, he was wonderful to me. When I tried to ask my mother to explain how he could be so mean and wonderful at the same time she said, ‘Yes he is a good grandfather, but he was not like that as a father.’ with no other explanation.
“I was also required to spend many hours alone with a close family member on my father’s side of the family whom my father made it clear he didn’t trust. In spite of how he felt about her, she was included in all family events, and, he allowed her close to me. How could he let me spend so much time with someone he didn’t trust?”
When Kaethe commented on these inconsistencies, her mother, although loving, didn’t respond directly to Kaethe’s concerns. In the face of conflict, her mother became “aflutter” and didn’t speak up when, for example, Kaethe’s father, a man who was loving one minute and harshly critical the next, flew into in a fury. Kaethe’s father tried to shut down her questions about what was going on around her. When she would ask about inconsistencies, he would exclaim, “Oh my god, there she goes again.”
For comfort, Kaethe went into her room where she could express all parts of herself in imaginative play. Her best friend there was a stuffed teddy bear she named Teddy Theodore Koala Bear Roosevelt Weingarten. To Kaethe, he was not just an ordinary teddy bear but her source of comfort and her confidant for many years. She told him everything. She had a loving relationship with him that included all her thoughts, feelings, imaginings, based on her ideas about ethics and consistency. In play, Kaethe worked to make things turn out right:
Along with her sense of ethical responsibility, Kaethe developed fears connected to her parents’ active political involvement. During the years of the McCarthy era, the family lived under constant threat, although it was never spoken of in front of the children. Kaethe tried to figure out what was happening. Based on bits of overheard conversations, she imagined frightening scenarios of an unsafe world.
I was struck by the things from Kaethe’s childhood that have been reflected in her life and in her work. She grew up with a sense of danger for herself and for her family that she couldn’t speak about. Alone, she had to figure out ways to make herself feel safe. Since no one wanted to speak with her about her experience, she spoke to Teddy about it and with him found comfort. Speaking out about important things that have been left unsaid has become the cornerstone of her life and her work.
Monday, April 02, 2007
Teachers: Kaethe's perspective
Teachers are women who believe that their lives are connected to the lives of other people in the world who suffer from loss, or who live under oppression. Although the Teachers have pain in their own lives, they move through their personal struggles by acting with others in mind with a hope for a better future. Their stories articulate their principles of social action and political justice. They aren’t deterred by personal or political obstacles from working in difficult situations. They call out to us to join them in their work.
In my blog I will write about two teachers: Kaethe, a psychotherapist, writer, and political activist from Massachusetts who has lived with serious life-threatening illnesses for many years; and Suraya a women’s activist from Afghanistan who has been tortured in prison and lives in fear for her life due to her political beliefs and actions. These Teachers connect their personal suffering to the suffering of others and work against the negative effects of silencing peoples’ stories of illness and injustice.
Kaethe–a woman who looks at death and finds life
I have known Kaethe for many years as a colleague and friend. I hoped to learn from her how, in the face of unrelenting illness, she has transformed her own suffering into understanding the suffering of others. Kaethe found in reviewing the occurrence of illness in her family that in every six-month period from 1974 through 1993, either she or someone close to her had been seriously ill. Since that time the intervals between illnesses have increased to a year, but these include two bouts of cancer that followed Kaethe’s first cancer in 1988. At present, she struggles with a life-threatening lung infection that may be a result of her radiation treatments. Although these illnesses have constrained Kaethe’s choices, she has a rich family life and has worked as a teacher, writer, political activist, and family therapist in some of the most difficult places on earth.
Kaethe has written over forty articles, chapters, and books, including her most recent book, Common Shock: Witnessing Violence Every Day: How We Are harmed, How We Can Heal.[1] She teaches in the United States, Europe, the Middle East, Kosova, South Africa, and New Zealand. Her long-time friend and colleague Corky Becker says that Kaethe, “spins silk from pain and suffering” by speaking when others are silent.
Kaethe wrote Common Shock from the perspective of many years’ work on connecting her own suffering with broader human suffering and global peace. In her book, Kaethe describes the violent world in which we live and the dangers of not naming and acknowledging daily violence. She describes what it takes to become what she calls a “compassionate witness.” Step-by-step, she teaches us to observe, to describe, and to take action against pain and suffering.
In both her life and work, she always remembers what she learned as a child about the significance of every action, no matter how small. Not long ago, at a conference on literature and war at Brandeis University, Kaethe saw a man speaking haltingly from the podium about his mother’s experience of the Holocaust. The moderator became impatient with him and cut him off before he had finished. The man quickly left the auditorium. Kaethe quietly got up and found the man standing outside smoking a cigarette. She went up to him and told him that she was sorry that the moderator had cut him off while he was telling such an important story. The man was surprised that she had noticed. He looked at her and thanked her.
In reflecting on this event, Kaethe explained to me how she acts as a witness by integrating her thinking with her emotional experiences:
“I bring an emotional and intellectual perspective to what is before me. I have come to understand that small interactions, ordinary things, can be the seeds of issues that are much larger. I work to make distinctions that are often omitted in difficult circumstances. I was sensitized to such omissions and how much information they contained as a child, but it has taken me a long time to make use of words to express what is going on that is being suppressed.”
I asked Kaethe how she learned to shift her attention from herself to others. She told me that she has felt connected to the world outside herself for as long as she can remember. As a young child, she believed that she and the moon were related. She remembers feeling compelled to push her bed around her room so that every night she could sleep in the light of the moon. Growing up, she expanded this feeling of connection to aspects of nature to a feeling of connection to other human beings.
Kaethe told me that she also stays in balance and attentive to the world around her by maintaining a sense of herself as a healthy person, rather than an ill person. Even as she struggles with the effects of illness, she refuses to allow illness to define who she is or will be.
She said,
“One of the distinctions I make is between having a disease and being an ill person. Without doubt, I have a disease and I often feel sick, but I never experience myself as an ill person. Disease is a fact. I have a number of diseases and that is my biological condition. Sick refers to negative physical sensations. I can divert myself from how intensely I feel sick, even though I feel sick much of the time. Whether I perceive myself as an ill person is a category of choice, and I don’t feel ill. ‘Ill’ is also a category of identity, and I don’t identify with this category.”
More about Kaethe in my next blog.
[1] Kaethe Weingarten, Common Shock Witnessing Violence Every Day: How We Are harmed, How We Can Heal. New York: Dutton, 2003.
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