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Activism


The following article is excerpted from Chapters 10 and 12 of Advanced Breast Cancer: A Guide to Living with Metastatic Disease, 2nd Edition, by Musa Mayer, copyright 1998, published by O'Reilly & Associates, Inc. For book orders/information, call (800) 998-9938. Permission is granted to print and distribute this excerpt for noncommercial use as long as the above source is included. The information in this article is meant to educate and should not be used as an alternative for professional medical care.

If you choose to, or are forced to retire from your work, on disability or otherwise, it makes good sense to strive to develop other meaningful activities, or to follow already existing interests, now that you have more time to do so.

The crucial thing to avoid is isolation and inactivity. Often, if you stay in contact with people, new possibilities will come about through opportunities and connections you hadn't anticipated. But you must be open to them. In exploring the Internet and participating in the Breast Cancer Discussion Group, Bob Stafford found a way in which he could make a real contribution, and eventually developed a website and discussion list for men with breast cancer. Other discussion lists for kids who were ill and who were dealing with a family member's illness derived from his concern as a father for his son and daughter.

I "retired" in January of 1993. And was almost immediately lost because I didn't have a whole lot to do. Bought a new computer system and started learning new things that I could do. Also played with the many radios I've acquired. And now I have a new "job".... So even if you don't go back to work you still need to find some activity to become involved in.

Barb Pender describes herself as a "late bloomer," returning to college following her divorce and enjoying her work coordinating math and science camps for middle and high school students. This past year, she's had to let all that go, because of her health, but she hasn't let this slow her down.

My interests are many! I keep in touch with my "students" and we try to meet once a month for pizza and chit-chat. My 15-year-old son is involved in rodeo--he is a bull and bareback bronc rider. So I am busy traveling to his various rodeos around the western states, cheering him on and taking great pictures of him! I also spend the better part of my week caring for my grandchildren while their mother, also divorced, works to support them. I wouldn't change that for anything--they're wonderful!! I also make time for various crafts and projects--I make angels, do needlework, collect dolls, tea sets, Hard Rock Cafe pins, McDonald's and Burger King toys and anything else I can get my hands on. I have a terrific life!!

Barb's capacity to find the positive aspects in the adversity of her experience has also led to her being asked to speak on several occasions before audiences of breast cancer survivors. Barb, and others who have become involved with groups dealing with breast cancer advocacy and support, have transformed the experience of having cancer into a focal point and source of meaning in their lives.

Speaking out, in itself, can become meaningful work. The people who agreed to be interviewed for Advanced Breast Cancer: A Guide to Living with Metastatic Disease have inherited a legacy of activism, briefly evoked here by poet and feminist Audre Lorde, who lived with metastatic breast cancer for many years, and died in 1992. Two months after her diagnosis, in 1977, Lorde entitled her speech to the Modern Language Association, "The Transformation of Silence into Language and Action." Her words speak to those who find the courage to tell of their experiences, whether or not they call themselves activists.

I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect...In becoming forcibly and essentially aware of my mortality, and of what I wished and wanted for my life, however short it might be, priorities and omissions become strongly etched in a merciless light, and what I most regretted were my silences. 1

Of course, there are many avenues to be pursued. Many people will find the most meaning in continuing the work that was already theirs, before their illness. Some are able to stay at work until the final months or weeks of their illness. Caren Buffum, who taught until two months before her death, described her own relationship to her work at different times during her illness:

The year I was participating in a Taxol study at the NIH, I was also teaching full-time. I would fly down to Washington every three weeks for three days. To do this, I had to write out extensive lesson plans for a substitute, do some very tiring traveling, spend two nights at the NIH, travel back feeling rather sick (often with my flight delayed for bad weather), return to school and try to catch up on the loose ends from my absence, visit the doctor three times a week for blood work (usually during my free/preparation periods at school), and then start the cycle all over again. Needless to say, I was completely frazzled by the end of that year.

I took the next year off from teaching, working instead at a friend's law firm. It was work I had done for several summers, good pay, comfortable environment, somewhat flexible hours and semi-interesting work. It was also extremely depressing--I realized then that I couldn't possibly spend the rest of my life going to a job that wasn't meaningful to me. I felt like if I had limited time left, this was definitely not the way I wanted to spend it. Of course, financial issues meant I had to work, but at the end of that year, I knew I had to return to teaching.

Thankfully, my husband got a new job along the way that allowed me to return to teaching on a part-time (mornings) basis, which is what I am doing now. But once again, as I look at my situation and that of others, I realize that there are many women with breast cancer who must continue to work long hours in jobs that are just jobs, and I thank God I go to work each morning with eager anticipation

Jenilu Schoolman worked as a psychotherapist until the end of her life, going so far as to meet with her clients so that she and they could reach a sense of closure during the final weeks of her illness. Some months prior, she placed her choices in a larger context, using her experience to highlight a need she believed that many women with metastatic disease deeply feel.

I am thinking about the fact that we clearly understand that women are most deeply moved by their affiliative needs (as opposed to achievement or competition). That fact must lay at the core of a new way of thinking about how to mobilize women to deal more constructively with their disease. I think that we look at the information on support groups and think we have found it. But I think that is the tip of the iceberg. I think we haven't begun to understand what happens to women when they are diagnosed with a disease that potentially and actually isolates them.

For example, many people are impressed with the fact that I go to work every day. They think somehow that is "brave" or I don't know what. I go to work to be with people. I have spent my entire adult life dealing with others and I need to be in a kind of emotional contact with other people. Staying home and being sick is just plain isolating. Those times when I have had to stay home have been agony, partly because I am stuck in my home alone. Which is not to say that I can't enjoy my own company, etc., but that a fundamental need for affiliation is being ignored.

Now if you magnify this process because of increasing illness and people's reaction to cancer, you can get a woman who is really cut off emotionally from others and who then gets very depressed; not from the cancer or from the prospect of dying, but from the isolation.

Six weeks before her death, Jenilu spoke of the difficulty she had communicating her continuing sense of aliveness in relation to her life's work to those who should have been most able to understand.

Over the years, I consulted with three different hospices. When I got sick again last year, I resigned from all but one of them. I continued with the one in Troy because I particularly enjoyed them and they were doing some interesting things. Well, the last time I was there, one of the nurses, clearly having consulted with the rest of the nurses, decided to confront me. "Aren't you building sand castles? Shouldn't you be staying home, waiting to die?"

My response was first of all to feel very odd. I agreed that perhaps I am building sand castles, and I may be a lot closer to death than I think I am but...so what? As I explained, I really don't think I can handle daytime TV and quiz shows. Though I love spinning, weaving and reading, there is only so much of that I can do. And, since my entire life has been about being of service to others, it only makes sense to continue to do that as long as I can. Fortunately, my work is so physically non-demanding I can do it when I really feel pretty sick. And if I'm too sick to drive, Pauli gladly drives me to work. But, honestly, who I am is about being there for others, listening and caring. Why should that change now? How could I suddenly become this narcissistic person who says, "Everyone come pay attention to me?"

Is this courage? For me, this is simply living your life in a singular fashion. It also does say something about our institutions; one might think that hospice might be somewhat more sensitive to the issues of living as well as dying. But maybe they are so focused on the process of death (and that everyone must have a "hospice perfect death") that they miss that people live till they die.

Activism

All of the people I interviewed for Advanced Breast Cancer reached out to others, especially to those who were experiencing the same problems they were. They shared ideas, feelings, amd information, and helped one another solve the problems they encountered. They tried not to allow themselves to become isolated. While they felt disappointed and rejected when some friends and family withdrew from them, they came to understand that this was not their problem, and that there were people out there who were not afraid of intimacy with someone whose time might be limited. They asked for help when they needed it, allowing themselves to rely on others when necessary without feeling diminished by dependency. They made their needs clear, rather than expecting others to know.

For Bob Stafford, the sense of love and community he found after his cancer diagnosis was a revelation.

One of the great difficulties I've endured in the past as a child is never quite feeling loved. What I have found is another family. I've found people who genuinely love me. No strings attached. They love me. Now I have new men and women who are like parents. I have new brothers and sisters. And their love is overwhelming. That's why I'll put up the pictures and cards on the wall of my room. Reminders of all the love and warmth I've received over the years from people. For so very long I hated people and would strike out for no reason at all. But now, but now hate has been bound by love. You don't know the number of days I weep from the joy I feel because someone has shown me an act of love and kindness. That's why it is hard to let go.

Barbara Ragland felt that her work to help others was crucial to maintaining her own equilibrium and perspective.

I was a Reach to Recovery volunteer for eleven years, and I'm sure one can't give encouragement to others for that long without having positive attitudes and philosophies rub off. They say that one of the best ways to get your mind off your own problems is to help someone else.

My family always was important to me but now they are most important (my three children are all grown). I think most of us with mets have discovered a new joy in things like watching a beautiful sunset, sitting by a crackling fire while the snow drifts down, smelling the smoke of a campfire, etc. I guess one learns to appreciate the simple things.

For some people dealing with metastatic breast cancer, the personal is inextricably linked to the political. Reaching out to others expands to social action. Breast cancer activism has flourished over the last decade as more and more women have found their voices. Impassioned and persistent efforts for increased research funding, as well as legislative and educational initiatives, have been fueled by the outrage and determination of breast cancer patients who are living with recurrence or with the fear of recurrence, and who have lost far too many friends to the disease. Their contribution is profound and powerful. For them, activism is a way of making a real difference, of transforming the lack of control and helplessness they may feel over a personal situation into social action that will benefit an entire society.

At the heart of activism is speaking the truth. Poet Audre Lorde, who died of breast cancer in 1992, spoke of silence and truth-telling twenty years ago, at the time of her diagnosis:

Death...is the final silence. And that might be coming quickly, now, without regard for whether I had ever spoken what needed to be said, or had only betrayed myself into small silences, while I planned someday to speak, or waited for someone else's words....I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you. But for every real word spoken, for every attempt I have ever made to speak those truths for which I am still seeking, I have made contact with other women ....And it was the concern and caring of all those women which gave me strength and enabled me to scrutinize the essentials of my living.

...And, of course, I am afraid--you can hear it in my voice--because the transformation of silence into language and action is an act of self-revelation and that always seems fraught with danger....In the cause of silence, each one of us draws the face of her own fear--fear of contempt, of censure, or some judgment, or recognition, of challenge, of annihilation. But most of all, I think, we fear the very visibility without which we also cannot truly live. 2


Notes:

  1. Lorde, Audre; The Cancer Journals (San Francisco: Spinsters/Aunt Lute, 1980), pp. 21-22.
  2. Lorde, Audre; (ibid).


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