A Burst of Light Read online

  Dinah, Aboriginal woman come down from the hot north hills of the outback, traveling by bus three days from mission to mission to meet with the writing women of Melbourne, because she had heard of this conference and she wishes to bring her stories to them.

  The stern, shy Samoan women in Auckland, plush and mighty, organizing study groups for their teen-aged kin, holding evening classes for them in how to understand the Pakahas (whites).

  The Aboriginal women reclaiming the famous Ayers Rock as Ulluru, a place of women’s Dreaming.

  The women of the South Pacific islands demanding their peoples’ land rights, rejecting the European and American nuclear madness that is devastating their islands.

  Brown people filling the streets of downtown Auckland, marching in support of a Nuclear Free and Independent Pacific. It could almost be Washington, D.C.!

  Black children sitting down in the middle of metropolitan Melbourne to celebrate Koori Day, the Black, Red, and Yellow flag of Pacific Liberation and revolution snapping in the sun. “What do we want? LAND RIGHTS! When do we want them? NOW!!” Banners ringing the shopping mall in Black, Red, and Yellow: PAY THE RENT!

  Merle, fierce and shining, a Caribbean woman writer calmly analyzing the sexism behind the lyrics of beloved calypsos.

  The Black South African seamstresses telling their multifaceted stories of survival, their soft voices filled with what Gloria calls a revolutionary patience.

  Black women taking care of business all over the world.

  September 21, 1986

  NEW YORK CITY

  The Autumn Equinox, a time of balancing. Nudie died of lung cancer today in Puerto Rico. Frances and I had just come back from a beautiful weekend in Shelter Island, and as we walked in the phone was ringing and it was Yoli. I feel that same sadness and fury as when I heard Hyllus Maris had died in Melbourne last month. Some of us refuse to have anything to do with other people who have cancer, reluctant to invite another sorrow, as if any reflection of our own battle either lessens our power or makes it too realistic to be borne. Others of us fashion a connection of support, but sometimes that connection is not solid enough and invites another grief. I felt I had a special pact with Hyllus and with Nudie. As if we had promised each other we would make it, but nobody does, and they didn’t, and I won’t either.

  But magical thinking doesn’t work. I’m so glad Nudie had a chance to go back to Puerto Rico, which is where she always wanted to end up her time.

  Making it really means doing it our way for as long as possible, same as crossing a busy avenue or telling unpleasant truths. But even though it’s childish and useless, I’m still angry with both of them for dying.

  That’s probably how some of my friends feel about me right now, the ones who can’t look me in the eye when they ask how I’m doing, even though I’m very much alive and kicking.

  It’s nine years ago today I had my first breast biopsy. Which was outstandingly and conclusively negative. So much for biopsies. Bob Marley weaving through my visualizations:

  won’t you help me sing

  these songs of freedom

  was all I ever ha’d

  redemption songs

  September 27, 1986

  NEW YORK CITY

  I hope when I reread this journal later there will be more here than simply a record of who died in what month and how their passing touched me. Maybe at least how I can use that knowledge to move beyond the moments of terror. I much prefer to think about how I’d want to die—given that I don’t want to die at all but will certainly have to—rather than just fall into death any old way, by default, according to somebody else’s rules. It’s not like you get a second chance to die the way you want to die.

  Sometimes I have the eeriest feeling that I’m living some macabre soap opera. And too besides, it’s being recorded in vivid living color. If so, I hope it’ll be useful someday for something, if only for some other Black sister’s afternoon entertainment when her real life gets to be too much. It’ll sure beat “As the World Turns.” At least there will be real Black people in this one, and maybe if I’m lucky, I’ll get to drag the story on interminably for twenty or thirty years like the TV soaps, until the writer dies of old age or the audience loses interest—which is another way of saying they no longer need to discharge the tensions in their lives that lie behind that particular story.

  November 6, 1986

  NEW YORK CITY

  Black mother goddess, salt dragon of chaos, Seboulisa, Mawu. Attend me, hold me in your muscular flowering arms, protect me from throwing any part of myself away.

  Women who have asked me to set these stories down are asking me for my air to breathe, to use in their future, are courting me back to my life as a warrior. Some offer me their bodies, some their enduring patience, some a separate fire, and still others, only a naked need whose face is all too familiar. It is the need to give voice to the complexities of living with cancer, outside of the tissue-thin assurance that they “got it all,” or that the changes we have wrought in our lives will insure that cancer never reoccurs. And it is a need to give voice to living with cancer outside of that numbing acceptance of death as a resignation waiting after fury and before despair.

  There is nothing I cannot use somehow in my living and my work, even if I would never have chosen it on my own, even if I am livid with fury at having to choose. Not only did nobody ever say it would be easy, nobody ever said what faces the challenges would wear. The point is to do as much as I can of what I came to do before they nickel and dime me to death.

  Racism. Cancer. In both cases, to win the aggressor must conquer, but the resisters need only survive. How do I define that survival and on whose terms?

  So I feel a sense of triumph as I pick up my pen and say yes I am going to write again from the world of cancer and with a different perspective—that of living with cancer in an intimate daily relationship. Yes, I’m going to say plainly, six years after my mastectomy, in spite of drastically altered patterns of eating and living, and in spite of my self-conscious living and increased self-empowerment, and in spite of my deepening commitment to using myself in the service of what I believe, and in spite of all my positive expectations to the contrary, I have been diagnosed as having cancer of the liver, metastasized from breast cancer.

  This fact does not make my last six years of work any less vital or important or necessary. The accuracy of that diagnosis has become less important than how I use the life I have.

  November 8, 1986

  NEW YORK CITY

  If I am to put this all down in a way that is useful, I should start with the beginning of the story.

  Sizable tumor in the right lobe of the liver, the doctors said. Lots of blood vessels in it means it’s most likely malignant. Let’s cut you open right now and see what we can do about it. Wait a minute, I said. I need to feel this thing out and see what’s going on inside myself first, I said, needing some time to absorb the shock, time to assay the situation and not act out of panic. Not one of them said, I can respect that, but don’t take too long about it.

  Instead, that simple claim to my body’s own processes elicited such an attack response from a reputable Specialist In Liver Tumors that my deepest—if not necessarily most useful—suspicions were totally aroused.

  What that doctor could have said to me that I would have heard was, “You have a serious condition going on in your body and whatever you do about it you must not ignore it or delay deciding how you are going to deal with it because it will not go away no matter what you think it is.” Acknowledging my responsibility for my own body. Instead, what he said to me was, “If you do not do exactly what I tell you to do right now without questions you are going to die a horrible death.” In exactly those words.

  I felt the battle lines being drawn up within my own body.

  I saw this specialist in liver tumors at a leading cancer hospital in New York City, where I had been referred as an outpatient by my own doctor.

  The fir
st people who interviewed me in white coats from behind a computer were only interested in my health-care benefits and proposed method of payment. Those crucial facts determined what kind of plastic ID card I would be given, and without a plastic ID card, no one at all was allowed upstairs to see any doctor, as I was told by the uniformed, pistoled guards at all the stairwells.

  From the moment I was ushered into the doctor’s office and he saw my x-rays, he proceeded to infantalize me with an obviously well-practiced technique. When I told him I was having second thoughts about a liver biopsy, he glanced at my chart. Racism and Sexism joined hands across his table as he saw I taught at a university. “Well, you look like an intelligent girl,” he said, staring at my one breast all the time he was speaking. “Not to have this biopsy immediately is like sticking your head in the sand.” Then he went on to say that he would not be responsible when I wound up one day screaming in agony in the corner of his office!

  I asked this specialist in liver tumors about the dangers of a liver biopsy spreading an existing malignancy, or even encouraging it in a borderline tumor. He dismissed my concerns with a wave of his hand, saying, instead of answering, that I really did not have any other sensible choice.

  I would like to think that this doctor was sincerely motivated by a desire for me to seek what he truly believed to be the only remedy for my sickening body, but my faith in that scenario is considerably diminished by his $250 consultation fee and his subsequent medical report to my own doctor containing numerous supposedly clinical observations of obese abdomen and remaining pendulous breast.

  In any event, I can thank him for the fierce shard lancing through my terror that shrieked there must be some other way, this doesn’t feel right to me. If this is cancer and they cut me open to find out, what is stopping that intrusive action from spreading the cancer, or turning a questionable mass into an active malignancy? All I was asking for was the reassurance of a realistic answer to my real questions, and that was not forthcoming. I made up my mind that if I was going to die in agony on somebody’s office floor, it certainly wasn’t going to be his! I needed information, and pored over books on the liver in Barnes & Noble’s Medical Textbook Section on Fifth Avenue for hours. I learned, among other things, that the liver is the largest, most complex, and most generous organ in the human body. But that did not help me very much.

  In this period of physical weakness and psychic turmoil, I found myself going through an intricate inventory of rage. First of all at my breast surgeon—had he perhaps done something wrong? How could such a small breast tumor have metastasized? Hadn’t he assured me he’d gotten it all, and what was this now anyway about micro-metastases? Could this tumor in my liver have been seeded at the same time as my breast cancer? There were so many unanswered questions, and too much that I just did not understand.

  But my worst rage was the rage at myself. For a brief time I felt like a total failure. What had I been busting my ass doing these past six years if it wasn’t living and loving and working to my utmost potential? And wasn’t that all a guarantee supposed to keep exactly this kind of thing from ever happening again? So what had I done wrong and what was I going to have to pay for it and WHY ME?

  But finally a little voice inside me said sharply, “Now really, is there any other way you would have preferred living the past six years that would have been more satisfying? And be that as it may, should or shouldn’t isn’t even the question. How do you want to live the rest of your life from now on and what are you going to do about it?” Time’s a-wasting!

  Gradually, in those hours in the stacks of Barnes & Noble, I felt myself shifting into another gear. My resolve strengthened as my panic lessened. Deep breathing, regularly. I’m not going to let them cut into my body again until I’m convinced there is no other alternative. And this time, the burden of proof rests with the doctors because their record of success with liver cancer is not so good that it would make me jump at a surgical solution. And scare tactics are not going to work. I have been scared now for six years and that hasn’t stopped me. I’ve given myself plenty of practice in doing whatever I need to do, scared or not, so scare tactics are just not going to work. Or I hoped they were not going to work. At any rate, thank the goddess, they were not working yet. One step at a time.

  But some of my nightmares were pure hell, and I started having trouble sleeping.

  In writing this I have discovered how important some things are that I thought were unimportant. I discovered this by the high price they exact for scrutiny. At first I did not want to look again at how I slowly came to terms with my own mortality on a level deeper than before, nor with the inevitable strength that gave me as I started to get on with my life in actual time. Medical textbooks on the liver were fine, but there were appointments to be kept, and bills to pay, and decisions about my upcoming trip to Europe to be made. And what do I say to my children? Honesty has always been the bottom line between us, but did I really need them going through this with me during their final difficult years at college? On the other hand, how could I shut them out of this most important decision of my life?

  I made a visit to my breast surgeon, a doctor with whom I have always been able to talk frankly, and it was from him that I got my first trustworthy and objective sense of timing. It was from him that I learned that the conventional forms of treatment for liver metastases made little more than one year’s difference in the survival rate. I heard my old friend Clem’s voice coming back to me through the dimness of thirty years: “I see you coming here trying to make sense where there is no sense. Try just living in it. Respond, alter, see what happens.” I thought of the African way of perceiving life, as experience to be lived rather than as problem to be solved.

  Homeopathic medicine calls cancer the cold disease. I understand that down to my bones that quake sometimes in their need for heat, for the sun, even for just a hot bath. Part of the way in which I am saving my own life is to refuse to submit my body to cold whenever possible.

  In general, I fight hard to keep my treatment scene together in some coherent and serviceable way, integrated into my daily living and absolute. Forgetting is no excuse. It’s as simple as one missed shot could make the difference between a quiescent malignancy and one that is growing again. This not only keeps me in an intimate, positive relationship to my own health, but it also underlines the fact that I have the responsibility for attending my own health. I cannot simply hand over that responsibility to anybody else.

  Which does not mean I give in to the belief, arrogant or naive, that I know everything I need to know in order to make informed decisions about my body. But attending my own health, gaining enough information to help me understand and participate in the decisions made about my body by people who know more medicine than I do, are all crucial strategies in my battle for living. They also provide me with important prototypes for doing battle in all other arenas of my life.

  Battling racism and battling heterosexism and battling apartheid share the same urgency inside me as battling cancer. None of these struggles are ever easy, and even the smallest victory is never to be taken for granted. Each victory must be applauded, because it is so easy not to battle at all, to just accept and call that acceptance inevitable.

  And all power is relative. Recognizing the existence as well as the limitations of my own power, and accepting the responsibility for using it in my own behalf, involve me in direct and daily actions that preclude denial as a possible refuge. Simone de Beauvoir’s words echo in my head: “It is in the recognition of the genuine conditions of our lives that we gain the strength to act and our motivation for change.”

  November 10, 1986

  NEW YORK CITY

  Building into my living—without succumbing to it—an awareness of this reality of my life, that I have a condition within my body of which I will eventually die, comes in waves, like a rising tide. It exists side by side with another force inside me that says no you don’t, not you, and the x-rays are wrong and the
tests are wrong and the doctors are wrong.

  There is a different kind of energy inherent within each one of these feelings, and I try to reconcile and use these different energies whenever I need them. The energy generated by the first awareness serves to urge me always to get on with living my life and doing my work with an intensity and purpose of the urgent now. Throw the toys overboard, we’re headed into rougher waters.

  The energies generated by the second force fuel a feisty determination to continue doing what I am doing forever. The tensions created inside me by the contradictions is another source of energy and learning. I have always known I learn my most lasting lessons about difference by closely attending the ways in which the differences inside me lie down together.

  November 11, 1986

  NEW YORK CITY

  I keep observing how other people die, comparing, learning, critiquing the process inside of me, matching it up to how I would like to do it. And I think about this scrutiny of myself in the context of its usefulness to other Black women living with cancer, born and unborn.

  I have a privileged life or else I would be dead by now. It is two and a half years since the first tumor in my liver was discovered. When I needed to know, there was no one around to tell me that there were alternatives to turning myself over to doctors who are terrified of not knowing everything. There was no one around to remind me that I have a right to decide what happens to my own body, not because I know more than anybody else, but simply because it is my body. And I have a right to acquire the information that can help me make those crucial decisions.

  It was an accident of circumstance that brought me to Germany at a critical moment in my health, and another which introduced me to one holistic/ homeopathic approach to the treatment of certain cancers. Not all homeopathic alternatives work for every patient. Time is a crucial element in the treatment of cancer, and I had to decide which chances I would take, and why.