Tuesday, November 27, 2012

"Stage V: A Journal through Illness," by Sonny Wainwright, 1983


 Note: This is the second installment of Sonny Wainwright's book, described by Audre Lorde in this way, "Sonny's voice is here, speaking words I am compelled to hear--an enduring story. Sometimes painful, sometimes soaring, always specific and essential. An honest, courageous and sustaining book."  I know there are many typos in what I have done and I will fix them after I have entered the text.  As Sonny's literary executor, I have taken this step to preserve Sonny's voice in another time. You will have to scroll down to read the text in the order it was written. So many years have passed, but as I sit typing, touching Sonny's words, it all comes back. All we tried to do, so many. Here is a history of one woman, one lesbian, one mother, one Jewish woman, one cancer traveler, one teacher, one lover, one friend, one member of the Lesbian Illness Support Group, on co-founder of the Feminist Writers Guild, one writer--and yet in the way memory and writing work, the layers build up into the history of a community.   







 
 Sunday, March Thirteenth
    Couldn’t write last night. Was too tired from a hectic day of calls and visitors, but here is the recollection:
   Deb came, at eight in the morning, with fresh bagels and cream cheese. I had told her about the blood clots coming down my throat, and waking with one in my mouth. I’m sure she wanted to comfort me, and coming here despite her hectic schedule at the Archives, is such a loving act each time.
    A phone call from a friend who cried. How could I help her when I need so badly to do my own crying?
    Rosemary came at two-fifteen. Very good session—she stayed until four—would not take money and said she’d be back next week.
     My sister and daughter were right on schedule. At five, a call from home on 95th Street: “Hello—we’re here and May Sarton called! Call her collect!”
     (There was a problem with the Columbus Day weekend scheduling, but May, who has had a mastectomy, was wonderfully caring on the phone. And she wrote A Reckoning before hser experience with cancer! (1) I’m looking forward to her reading for the Seven Poets Anthology Fund-Raiser, and at  the same time I’m anxious as hell to get the whole thing safely and successfully over with!)
      At six-thirty, Edith and Lydia walked in. No tears, and Lydia climbed on my bed and turned on the TV just as Rosemary had predicted! A text-book case! Later, Joan, Deb and Karyn came in, and the most amazing thing happened. We started talking about my illness and our feelings about it, and suddenly Lydia got involved and off went the TV, and out came her fears, terror for my life, and all that love for me, and we hugged and cried. Joan and Deb hugged each other tightly, and so did Edith and Karyn. I cried for Lydia and myself, for all that should have been there in the past and wasn’t. I cried for what I would be missing in the future, not being able to be with her on a daily basis. I cried from the pain of our separation, because she was flesh and blood in my arms now, but not for long. And then I cried from the relief of knowing that she was in good hands with Edith and couldn’t be with me realistically through this terrible time. She needs to be taken care of, and I can’t do that now. And she must be frightened out of her wits by what’s happened to me, and must rather want to be 1,000 miles back in Kansas and at her horseshow!
     When others went home, Karyn stayed over, and we talked until three in the morning—a cot for her pulled close to my bed where I could reach down and touch her. I can’t remember all we talked about, but part of what we said to each other was that each of us has never stopped caring about the other, even though we couldn’t be together for good times before this illness recurred.
     I’m going to be tired today, with only four and a half hours sleep, but it was worth it!
   This morning, Batya Bauman, my tall and solidly built peer, came at eight—woke us, and Karyn took off. Batya and I had breakfast together—shared my bagel, cream cheese, eggs, roll and sausage while we talked up a storm about ourselves. Wonderful! I love her, and all is OK with her lover and herself—hope they make it!
    My room looks like a garden. Karyn’s parents sent flowers. And I got three plants and more flowers from others.
    At eleven this morning, Gladys and Karyn caucused on some questions for the doctors. Roz showed up at eleven forty-five, and then Edith joined them soon after. Roz was helpful and great, but obviously having trouble dealing with my illness. We didn’t get time together after the meeting, because Cora came in and cut off my beautiful hair. I’ve been rather proud of the fact that there is no gray at fifty-three. At the same time, I’ve been hoping for that wonderful, mature look that comes only with the graying or whitening.  The haircut turned out OK after all: very butch with a little over an inch of hair left over my head—but it looks good.
   It occurred to me some time ago that I’ve got quite a team out there doing all the work for me. Deb is handling scheduling of visits: that’s a full-time job—I would say a vagina-breaker. She and Joan have worked non-stop on my behalf, since I first got sick in January! Marge has been scheduling visits (talking constantly with Deb to coordinate it all), giving the latest bulletins and answering queries over two her phones. Gladys is handling my medical forms and the red tape of the NYC Board of Education. She’s been knocking herself out, since I called her in February! Karyn has been a whirlwind of help—every thing from picking up my mail and even watering my plants (which she hates to do), to being here every day and often more than once or twice a day, and even to opening a joint checking account, so that she could pay my bills for me while I’m incarcerated here. She has turned out to be the biggest “secondary” gain” of this illness: it’s wonderful to have her in my life again! And there are all the others who are visiting me regularly, bringing all the small things I need. I am terrible selfish—want EVERYONE here at my request—no at my demand, and they are all putting up with me and giving me what I want! And no Edith and Lydia are with me, and my mother, too. I’m not battling this illness without getting an unimaginable amount of support. If I get half the help from my medical team, I’ll make it!
     (Oranges and grapefruits taste too acid, and I’m disappointed because Gladys brought a load of the first Tangelos of the season and I can’t eat them.)
     Monday, March Fourteenth
   Do NOT write me off yet—the obits are in for Joan Kelly and Jane Chambers and close for others of us across the nation: a country destroying itself for money (I think to myself that there are husbands and fathers in the Pentagon whose wives are getting cancer and whose children are coming down with diseases related to the polluted environment we live in. Even industrialists suffer cancer: how can they keep selling products and putting poisons into the air and atmosphere that kill twenty years later?) For me, life becomes the battle—and I chose it with a passion—with a purpose beyond myself—with pride in the army that supports me—an army of women in my community and across this nation. Not one of us is free the shadow of the monstrous multipliers—cutting us down in the prime of or our lives—getting so little attention or money (except when it generates more profit) from a society which stockpiles death and is stingy on life. I am choosing an option that may allow me to continue my life. An experimental program that offers some hope for me now—and perhaps later—for others.
     So today I walked outdoors, for the first time in ten days, to visit the special unit. The weather was mild and Gladys and Edith were with me. It was wonderful to feel the breeze on my skin and see trees in Central Park with buds on them. The forsythia is ready to burst into bloom: a harbinger of springtime.
    Karyn joined us, and we took the tour with Monica-Caravella RN the administrator of the unit. KCC 6 North is a special unit with specially trained staff to handle the chemotherapy patients. It’s small and the rooms are cramped, but it looked fine to me! It faces west, so it’s stuck behind the huge new Annenberg building, except for a few rooms that jut out past the edge and look into Central Park. Another unit on the east side was used in special experiments that Holland did with isolation patients, and it’s used for chemo patients now, but we didn’t go in there. These units are funded by an arm of the Robert wood-Johnson Foundation, where Linda M. works as Assistant Director. (She and David have a house in Princeton, New Jersey full of both their kids from first marriages. I like her so much: she is a feminist in so many ways, and David has changed a lot since he met and courted her.)
    So we checked out the facilities and found out a little more about how the Adriamycin will work. Basically, it’s designed to kill cancer cells in a highly toxic treatment: it also gets a lot of healthy cells along with them, but the normal cells regenerate more quickly. They’re smarter than the confused, mutant cancer cells. If needed, I’ll get blood transfusions and/or massive doses of antibiotics to fight the danger of infection caused by the temporary lowering of the body’s immune system. At the end of the first treatment cycle, I’ll go home and continue as an outpatient through Jones’ office on 98th Street and Madison Avenue which is just across the park from my apartment. So ironic that the hospital is close to my school on 106th Street, but, of course, I chose to live near where I worked for Lydia’s sake. Having Mount Sinai so close was a lucky coincidence.
     I have never had chemotherapy, and I’m terrified. I’m also frightened by a standard treatment which keeps the hair intact but isn’t strong enough to kill all the cancer cells that are multiplying in the marrow of my bones.  For me, cancer is not the kind of disease that I can live with as one lives with a chronic illness. With this spread, the statistics are just too rotten, and I want to take the risk—for possibly higher gains.
    I’ve lived these past eight and half years knowing the disease could recur at any time—in any part of my body. There was nothing to be done, except that soon after the loss of my second breast I opted for living my life differently: on MY terms! I entered the lesbian/feminist community (after early years as a lesbian who lived with her lovers in the middle-class lesbian closet); started writing again; met and courted Karyn and came out to everyone, everywhere except at work. I don’t regret any of it—I just want more of the same! And I refuse to think that I won’t get it.
    When we were done with the tour, Karyn, in her hooded red down jacket, and I, in my brown wool Evan Picone pantsuit, went to the women’s room. We were standing at the washbasin when a woman came in. she looked at the two of us, and then blushed a deep red. “Excuse me,” she said, “I must have come into the wrong bathroom.” She turned and hightailed it out of there and we didn’t see her again. For a moment we didn’t understand, but when we did, we howled! She  thought we were two guys!
     This hadn’t happened to me since I was lovers with Karyn, but I guess it happens to Karyn a lot, thought probably the woman speaking would be rather indignant, saying something like, “You’ve made a mistake—you’re in the wrong bathroom, you know. I’ll just wait outside until you leave.” Then Karyn has to say, “I’m not a man. I’m a woman.” Her lovely voice is a woman’s voice—but I don’t know if it would help the hapless stranger!
Tuesday, March Fifteenth—6:40 a.m
     Yesterday was one of the worst I’ve had since entering the hospital: I think I needed to deal with despair, after allowing so much hope. Small aches and pains keep me miserable, and I gave into them as well as the bigger life and death issue.
     Last night, the Lesbian Illness Support Group met here in my hospital room. Karyn (after all these years of keeping a place for her, she is finally claiming it) and Nancy, our resident healer, and Joan and Deb (somehow couples get locked together, even in writing their names), and Linda T. I had hope Ava would make it, but she couldn’t come. She’s been working, and her job as a lawyer saps her energy—not too high to begin with!
      I was given the time to release a lot of anger and pain, and it was helpful. I know there’s more to go, but after the terrible day, at least, there was a verbal outlet: I cried and raged, and had the ears and attention of women who understand and have known me for years.
    (The Lesbian Illness-Support Group was started five years ago by Joan and Deb after a workshop with Audre Lorde, and I was invited to join them. The Group works well for many reasons. First, it meets no more often than bimonthly which prevents burnout. Second, it has supporters: temporarily-abled lesbians, whom we call our “healthy” members as well as the ill people in the Group, and these have often been the same women changing roles. Third, there are some very strong characters in the group, myself included, who can and do take leadership at alternating times. Fourth, we deal not only with personal details, but also with issues. Fifth, we have been able to change and grow: members have come and gone, but the Group flourishes.
   Use of the word “Lesbian” in our title has allowed us to exclude straight women from the group, keeping us from having to deal with male/female relationships. We have limited the group to lesbians who are suffering from an onset of illness in our adult lives. Certainly groups are also needed to support women who share common concerns around such areas as chronic disabilities, birth defects, and emotional disablements, but we have learned from experience how to keep the group intact and helpful to each of its members. This group is where I can trust others and myself to face the pain and horrors of illness—so that I am free the rest of the time to be productive.)
      After the group left, I couldn’t sleep. Went out into the hallway and past the nurses’ station, stopping to talk to one of the night nurses: this night nurse who describes herself as “nasty, all my life” is, to me, a handsome, dark-skinned dyke.
Wednesday, March Sixteenth
     Judith Horam is making me a sign: THE RED DEVIL LIVES HERE!! She hasn’t been able to visit me, but she has taken care of Sunshine and the plants. Has trouble coming into a hospital, as do a lot of other people. Neither has Kate Brandt  been able to come. She is moving to San Francisco soon, but has kept calling and sending me funny cards. And Amina Munoz is busy having her baby. So out of the Seven Poets Anthology women, only Anne Corey and Linda Grishman have been able to visit.
    Tonight will be my first Adriamycin treatment. Still here in Guggenheim 6, not KCC 6 North where I want to be. I get the first dose of “The Red Devil,” which used to be called the “The Red Death,” because it was first used on patients who were dying. They got the Adria, and then they died, anyway. It took the doctors a while to learn how to use the drug. Jones told me this. I was also impressed when he told me he was related to Eudora Welty. (He had noticed the poster on my wall.) He leans his young, beautiful body against an available wall, runs his fingers through his bright red hair and talks lovingly, thoroughly, commandingly and convincingly.
Saturday, March Nineteenth—3:00 p. m.
  Dream: How silly! They were bombing my house to get rid of the rats, when all they needed to do was put out some poison!
     The treatments themselves were not too bad. I was frightened of them, and so there was a lot of tension involved, but I haven’t vomited at all. The Compazine used to avoid nausea is worse than the actual treatment: it spaces me out and I hate the feeling. And they kept in an unnecessary IV the first night. Otherwise, the routine was the same. The PA (Physician’s Assistant) came after nine and gave the medications. I went to sleep, waking a lot to pee, but going right back to sleep again, after a suppository of more Compazine administered by Claudette Bentley, my private duty nurse. And in the morning, I was fine. Had company each of the three days, and Edith was with me each night until I fell asleep.
  There was quite a flurry of activity and anxiety over the start of these treatments. The thickest part of the storm centered over the three old folks vacationing down in Florida. When and how should they be told about my recurrence? Who should tell them, and who should meet them at the airport? When should they come back to New York?
     The decisions made were based on the “protocol,” a detailed medical explanation of all the possible things that might/might not happen to me. Edith, Gladys, Deb and Roz all did a lot of consulting—some of it, long distance, as far away as California. The treatment sounded as bad as the disease itself! “They” would just about “kill” me and then bring me back to life with transfusions.
    Based on this frightening description, Edith and Gladys decided that Mom, Dad and Tante Tillie should see me  before the first treatments started, just in case. Edith called Mom and broke the news; she and Gladys spent a lot of time and trouble finding a limousine to pick up the family at the airport. Both of them took the limo out to Kennedy, and everybody then came straight to the hospital. I saw my aunt and parents at about five-thirty Wednesday evening, and though I was very upset that they had to come back home for me once again, I was happy to see them. For my Mom, the only mitigating circumstances were seeing her granddaughter Lydia and her younger daughter Edith so unexpectedly! And seeing me quite alive and looking good.
     Afterward, Karyn, Anne C. and Linda G., and Connie Signor came and stayed through the first treatment. I’m glad Karyn wasn’t alone with me, and I know Anne and Linda spent the night together—needing each other. Connie is a nurse, but I don’t think it was easy for her, either….The fear of death is ever present for us all.
Monday, March Twenty-First--11:00 a.m. [1983]
   Trouble on the front lines! They wanted me to move this morning to convert my room to a semiprivate. It took the hospital administration—and Holland and Jones—trying to make me feel like a bad, selfish girl (but I do not)—to get me to move to other that KCC 6 North.
   Now it’s hard to explain what triggered my active resistance—but let me try. My stubborn streak won out over reason (How can one person hold off an army of carpenters and “The Administration?” I did, until my doctors were called.) I was feeling weak, exhausted, nauseated, apprehensive about my future, stuck like a pin cushion and depressed about not having got that KCC 6 North room before the first, frightening series of Adriamycin treatments. Now I was being told, not only that the special unit was still unavailable, but that I had to more out. That meant two moves a few days apart—so difficult for me—so carelessly inflicted for the convenience of the hospital. It was the last straw!
    Feel depressed because I could not turn it back on them! I had to yield to Holland. Jones argued that I was keeping him from an emergency cake—NONSENSE—here it is money, that is, the making of money, that counts.
     NO NOTICE, NO EXPLANATION:
   A guy walks in and says, “You’re moving.”
   An IV appears and no one tells you that you’re going to get a transfusion.
   My doctor has a caseload of seventy-two patients plus research work two days a week. And there are far too few beds in the KCC unit. I don’t know when I’ll get out of there.
   My symptoms now: sore throat, dizziness, fever stated as 102.2 when the chart I looked at reads 100.2. I’m given Tylenol (no more aspirin for me—danger of internal bleeding too great.) but was it necessary?
 
   The PA says I might need platelet transfusion today and wants to start an IV for her conveniece just in case—I wouldn’t allow it. Time enough if I need platelets.   
    And Jones tells me to “trust the team!” TRUST? Yes, I trust you most of the time; you have told me the truth in all except this ridiculous statement. The truth for me is that I don’t trust ANY of you!
    A nurse comes into my room who knows shit about chemo. I can tell she is scared to death by it. She asks me all sorts of question.
   PA knows nothing about my case, and he’s ordering a transfusion! Then he tells me there’s a death at KCC 6 North—maybe I can get that bed. I have to walk down the hall. Thank the Goddess I wasn’t moved before the three treatment days.
Tuesday, March Twenty-Second—4:10 a.m.
     From that which we can never escape—the boundary of our bodies—comes rapt and compelling attention to a mountainous cavern of pain from simple heartburn on the right side of my chest.
     Mylanta helps, but food hurts going down and is absorbed, it seems, into my lungs instead of my stomach….I marvel at how I remain alive.
    Holland came back tonight, ostensibly to tell me about a TV interview he had on Channel eleven, but actually to make peace, after I had complied with his orders to move. I have a mixture of feelings for him—respect for his work and good results, yet anger at his lack of sensitivity to, or even knowledge of, his privileges both as a man and as a doctor, and fury at his words to me this morning (already yesterday morning): “You are a narcissistic, egomaniacal neurotic.” I felt there was quite a bit of projection there. Without a strong ego—how could I survive this ordeal?
    Roz—we are attracted to each other again. Talked about how, despite tow break-ups in as many years, there is still so much feeling between us. Talked about Karyn—Roz feels we’re courting danger. But, Oh—I need Karyn now! And how wonderful she has been during this crisis.
    Jewelle visited. She and Cheryl Clarke and Peg Bryon tried to donate platelets for me. Seems I’m getting a big response to calls for platelet donors, so that I can have them available without having to use the blood bank, which need medication along with their infusion.
   There go the WOMEN again! I’d better get well fast or my closes friends are going to have to join me here from exhaustion!
    Marilyn H. came after Jewelle. She is in a hectic period what with kitchen renovation and a trip to Brazil on Wednesday with her young daughter Iva. Her poem Iva’s Pantoum (3) is a favorite, and I wrote one for my daughter:
Lydia’s Imperfect Pantoum
Mothers and daughters play dangerous games
There is the gift I fashioned for her
Carried for hundreds of hand-me-down years
Through impoverished Jewish ancestors.

I fashioned this gift for her. There is
Love of studying, books, reverence
of Jewish ancestry. Impoverished,
 the men gave their lives to love of learning.

Revered books and love for studying
 Are rejected for horseback riding.
Her life is not given to love of learning.
She hates school and leaves me diminished.
  My values are rejected for horseback riding:
My child is not me. Running in place
She hates school and leaves me diminished.
Physical pain does not hurt as much.

I am not my child but I am running in place
Marking time with the impatience of the young.
What hurts as much as physical pain?
She is diminished by hating school.

This impatience with marking time. She is young
And fighting for separations some too soon and others late.
Physical pain does not hurt as much.
I wish she were not Episcopalian on her father’s side.

Some separations are sought too soon. Others late,
Carried for hundreds of hand-me-down years.
Physical pain hurts neither of us as much as
Mother        and daughter     playing dangerous games.
  
    I sent Marilyn H. my poem, “Dispossessed” for the Working Class Issue of 13th Moon.
    “I never give up,” I said.
    “Good,” she replied.
    …Well, if she takes it, it won’t be because she feels sorry for me. You can be sure that Marilyn accepts only what she considers good poetry, and good work.
Dispossessed
Neighbors crying on the sidewalk
Their belongings piled upon
Each other. Chairs, tables,
Isinglass lamp and cast iron pots.
Clothing in boxes and
Paper bags filled with photographs
And letters. Sewing stuffs
Spilling on to old cardboard suitcase
Wrapped by khaki belts.
My mother passes by and
 Stuffs the sewing back into the bag.

She shakes her head and murmurs words
Her four year old can’t hear across the street
Then puts her arms around the
Crying couple     disappears.

This child felt pain blotted out
By focusing on things.

I see a headboard made of brass     its mattress
Standing up against an underframe of metal
Diamond-laced companion to a fern
A maidenhead in claypot. All as strange
Upon this sidewalk of the Bronx
In nineteen thirty-four as my
Nightmares of a fire repeatedly
Consuming the tenement we live in.

Anna Moskowitz        my mother    comes out
With coffee pot    spilling loud words
Makes them laugh
Her Jewish curses interspersed with
Consolation. No shande* this
They could not pay the rent it
Might be us there on the sidewalk
It might be anyone
Someone would find a place for them.

She tucked me in that night
I listened to
Her lullaby   then slipped into the
Nightmare of the burning.

…I am smoking pot to help the “indigestion” which I found out is a side effect of the Adriamycin treatment. Maybe I can get more sleep now, it’s still early.
Later—A Fragment of March 20th
    Karyn slept over and was with me for the first day of official Springtime. I wanted to write down the wonderful experience we shared in the morning: a nurse, who has two feminist daughters, when KAryn and I went in for a shower together, not only approved, but was enthusiastically encouraging and supportive. The revolution makes itself known in many differing and wonderful ways! Perhaps her daughters were more than feminists…
    This helped me to get through the terrible day of confrontation and moving that followed!
    I keep thinking of Audre Lorde—wanting to hear her voice—wanting to get through the barriers that keep us from real communication. Will that ever happen? She’s at McDowell (Writers’ Colony).
Thursday, March Twenty-Fourth
An unsent letter to Audre Lorde
Dear Audre,
    How angry I am that we never got past the outward barriers to talk about commonalities underneath. Difference? Oh, Yes! So many, but within them, the body of differing experiences lie some similarities—not to be dealt with now—rather the pain—that after that initial visit at your home—instead of continuing, cultivating, chewing, considering, cancelling, ect., ect., there was limited contact, nothing more. You were wonderful. You agree to read for “thisa and thata” until some, probably racial, misunderstandings, separated us, so that there was nothing in the flesh between us. Another truth could be that your life was already quite full, but somehow we always make room for what we want in our lives. Pity!
   Because now that breast cancer has spread to my bone-marrow—eight and a half years later (meeting the statistics) and after six good cancer-free years—here I am back in the hospital dealing with the unmentionable—chemotherapy—The Red Devil Adriamycin with its terrible after-effects of self-chosen (??) nuclear-like attacks into my body. It is something which may be terrifying for you, or perhaps not: I should like to know.
  So—my amazon sister—can we eliminate the artificiality that separates us---will you forgive my constant stupidities—and will you support me in my struggle—which, damn it, is also assuredly yours?
                               In struggle but with the deepest regard and affection, Sonny
Sunday, March Twenty-Seventh—8:20 a.m.
      Have lost a couple of days: moving rooms again took a lot of energy, and I’m in my tenth day, which is crisis time through next week.
       My new room at KCC 6North is in the back area that I didn’t visit “on tour.” It’s better than the cramped double rooms—has a window facing another building of the hospital on the north side—but it’s laid out very peculiarly. There are four rooms back here, all of which were once isolation cubicles.
      I watch pigeons on the roof crawling in and out


  

Gated Communities, Walled Nations

I couldn't help but notice similarities in portraits of exception: Barak, the retiring Minister of Defense of Israel, once saying "Israel is the villa in the jungle," and the depiction of the gated communities of Breezy Point and Sea Gate. All these entities see themselves as privileged sites of protection from their surrounding neighborhoods of difference. Those outside the fence can only stand and watch as government funds pour through the gates of exclusion to recreate the exceptionalism that nature destroyed. As one resident of Sea Gate said, being "private" is what makes Sea Gate so essential to him. So private that not even the street names of these communities appear on  official maps. Secrecy and exclusionary, supported by the taxes of all, even those who cannot pass through the gates, supported by some who were themselves once upon a time not allowed to live in these "safe havens." Other storms will come.

Wednesday, November 21, 2012

For Sonny Wainwright, a Promise to be Kept



Sonny Wainwright, Greenwich Village, 1950s



In 1984, Sonny Wainwright asked me to be her literary executor. I was not sure what that meant but I knew it was an honor. Now it is time I carry out that responsibility. What will follow is the 1983-4 text of Sonny's Stage V: A Journal through Illness. Sonny will tell you in her own indomitable voice who she is and how our lives connected in those heady days of lesbian-feminism, how we struggled to care for one another. A few copies of the book, originally published by Acacia Books, 1984, are available on Amazon. While I can give you the words, I cannot give you the feel, the photographs, the weight and cover of the original.

Stage V: A Journal Through Illness
By Sonny Wainwright, 1984

The First Installment 

This book is dedicated to my sister, Edith Moskowitz Hinrichs,
with love and gratitude for a lifetime of caring

Acknowledgments
Thanks!
--To Joan Larkin for starting it all—she typed the first few pages for me—and she believed! And to Sue Willis—her sharp objective eye!
--To Acacia Books, Marjorie Larney and Paula Moseley, my publishers—for responding to my short note of inquiry with: “Yes, we want the book.”
--To Edith, my blood sister; Joan and Deb, Marge, and Isaaca, my friends/family; Roz and Karyn, my ex-lovers/family; and Gladys, my cousin—for their great devotion and energy.
--To my daughter Lydia—for her courage and love.
--To the women of the organizations—Feminist Writers’ Guild and Gay Women’s Alternative, Lesbian Herstory Archives and Womanbooks—for their support of me and of those who were closest to me during this special time.
--To Mari Alschuler for the gift of the final typed manuscript.
Introduction
                by Joan Larkin, 1984 
   When I first met Sonny Wainwright in the winter of 1979 on the telephone, I had no idea of the profound impact she would later have on my life. Pushy, I thought.
   I was reacting not so much to what she was saying—this stranger telling me that she wanted me to read with some other poets at a Lesbian Pride Week event she was organizing—as to how she was saying it. Her voice struck a nerve. A prejudice, rather. Her voice reminded me of where I’d come from, the Russian Jewish peasants on my mother’s side. Sonny sounded familiar: earthly, demanding, confident—like the aunts I’d avoided for years, while I cultivated good-girl deportment, softness and understatement.
   I told her No, I was too busy. Probably snottily. In those days I frequently felt irritated and put upon. I was in denial about my periodic bouts with various addictions (I held out against recovery until spring 1980). I was often arrogant, as a cover for fear and low self-esteem. I told her No, and Sonny politely accepted my refusal. Of course, my writing came first, she agreed. But perhaps I would read for GWA next winter.
    “Who the hell is sonny Wainwright?” I asked a woman who knew everyone in the community. It seemed she was a poet. She was a mover and organizer, actively involved with the Feminist Writers’ Guild and Gay women’s Alternative, and working in coalition with other groups. She was someone’s lover, someone’s good friend, “Oh,” I said. I forgot her and went back to my unmanageable life.
    I met Sonny again sitting with some women I knew in the audience of a play by the Women’s Experimental Theatre. She put out her hand to shake mine. I was surprised. At first, I couldn’t take in this slight body that was producing the memorable, dynamic voice. Sonny was short and thin, in a stylish tailored suit and short haircut. The architecture of her face was both delicate and strong. Her gaze was powerfully direct. She seemed genuinely pleased to meet me, and for once I let go of the suspicion I felt in those days when I met new people.
  We met that way—at a party, a reading, an event—now and then over the next few years. We had friends in common. We finally did read together, at Gay Women’s Alternative. Once or twice we shared some of our experiences as mothers—love for our daughters, maternal guilt, the pain of trying to detach. Always, Sonny was warm, enthusiastic, gracious. I was polite but inwardly absent; friends say of me in that pre-recovery period, “We knocked but nobody was home.”
   Once more, I forgot Sonny. I hit bottom with alcohol and was starting life again. For a time I let go of everyone and everything from my past, as I opened myself to a twelve-step program of support and healing. When I heard about Sonny again, in winter of 1983, I had faced my dragons. I could open my mail and answer the phone without panicking. I was in touch with old friends. One of them called and told me that Sonny Wainwright was in the hospital. She was dangerously sick with bone-marrow cancer, and her friends were phoning potential blood platelet donors and scheduling visitors.
  I could not assimilate these facts. I went to the hospital feeling numb. The nine years’ difference in  age between Sonny and me was insufficient to protect my denial: she was a peer, another one, with deadly cancer.
     With cowardly heart—I was afraid to look my own mortality in the face—I went from the blood donor unit to Sonny’s hospital room. For the second time in our acquaintance, I was shocked. I saw with complete clarity that Sonny was a powerful and beautiful woman—I had never really let myself look before. Her face was drawn and tired from the course of experimental treatments she had agreed to subject herself to, but there was a glow coming from this fragile, tough woman. Was is the life force that had been there along? Or the beauty of energies focused on a single goal: survival.
   I was trying to think of what to say, shy and terrified behind a ridiculous grin of confidence and denial. “Tell me, “ she said, leaning forward intently. “Was it a problem for you, coming here? So many people find hospitals difficult. I hope this wasn’t too hard for you.” I was shocked again; Sonny was taking care of me.
     During the visit I watched her manage a complex social life, taking phone calls, meeting visitors’ needs and introducing us to one another, while her mouth burned and her stomach rebelled against the chemotherapy. She struggled with the hospital bureaucracy to get her particular dietary needs met. She apologized for her appearance. She was, it appeared, trying to connect gay and lesbian hospital personnel. Some men and women who wanted to come out to one another had begun signing the sheet tacked to Sonny’s wall. “We should do something for the AIDS patients,” she said.
     Slowly she walked with me to the elevator. “We’re blood sisters now,” she told me, tightening the sash of her robe. She looked weary and thin, but I saw her not so much as vulnerable as honed to her essential self. “I’m so glad I’ll be getting your platelets, Joan; maybe I’ll be able to write a poem.” I was dumbfounded. I decided not to mention that I was suffering from writer’s block.
    Subsequent visits were like the first. I arrived tired or fearful, unsure of what to say, and left energized, inspired. Sonny was a power of example to me. “All I want is a good remission,” she said, “so that I can write.” Write! I found this hard to believe. Here I was three years into recovery, still waiting for words to descend on my page, while sonny, caught up in an exhausting, dangerous fight for her life, was writing every day. “It’s just a journal,” she said deprecatingly. “I want to do real writing again—stories and poems.” We argued about what real writing was. Greedily, I asked to see the journal, and Sonny shared it with me. It was, not surprisingly, as tough and candid as she.
    “Women need this,” I insisted. Dubious about the literary value of mere truth-telling, she agreed to begin choosing excerpts that would tell the story of her illness and the women’s support network that had rallied to help her.
     As she edited, Sonny continued to keep a journal of her illness and treatment, the setbacks, the victories. She wrote even on her worst days. As the weeks went on, I realized that I had come to depend on Sonny’s will to survive. Her faith in the value of writing was teaching me to respect my own creativity. “You don’t have all the time in the world,” she warned me. I was having to learn, after several unproductive years, that the path to the smooth, edited final product is full of blind alleys, surrenders, and sometimes painful excisions. I watched sonny—her guts and persistence. She told me that she was learning to cultivate the friends who validated her work; when she was better, she would treat herself to the writers’ workshops she needed. In May, there was a party to celebrate Sonny’s having gotten the upper hand in her battle with cancer. She was still in treatment, still writing. In August she schlepped from Manhattan’s Upper West Side to my Brooklyn apartment for an all-day women’s writing workshop. Ten women crowded into my tiny living room to write—no air conditioning, sweat pouring—and did the homework of poets and prophets: telling our stories.
     I continued to be amazed by Sonny’s energy. She had found a publisher for the journal and now wanted to know if I would write an introduction. Despite my intimacy with her illness and recovery, I knew almost none of the details of her past life. She shared them with characteristic frankness and generosity.
     Sonny told me that she had been raised in the Bronx and educated in city public schools and colleges. She began writing early, and from thirteen to fifteen she kept the first of several diaries. At eighteen, in 1948, she came out with a classmate and “hit the Village”—a phys. Ed. Major, a dancer, a bohemian, a leftist. Her women friends were students, aspiring to professions. The prevailing psychology taught that homosexuality was bad, and after a series of long, monogamous relationships, Sonny, in her early thirties, left her friends and gay life and went straight. Her father had died; she had been appointed Assistant Principal of an East Harlem junior high school (a position she held for twenty years), and was living in an East Side apartment. Not being able to tell the truth about herself had made her stop writing, “I just had had it with feeling rotten about myself.” The way to do that was to do what was societally acceptable. “It was either change or die, so I died and changed.”
      Sonny talks of her decisions without bitterness. She says she enjoyed her life and grew, underwent psychoanalysis and eight years of group therapy. She married within six months of meeting a man in 1967. Lydia was born one year later. Sonny supported her husband when he quit his job, and when they separated began raising their one-year-old daughter alone. She helped form a parent co-operative preschool. “The kids were very happy there,” she recalls; “it was multi racial and multi religious.” She teamed up with a single parents’ group that double dated and shared houses on Fire Island every summer. “I’ve always had a support group,” Sonny recalls.
    In the summer of 1974, Sonny underwent a mastectomy—her first. Her sister and woman friends helped by caring for Lydia; Sonny recuperated and returned to work without having missed a day. After the mastectomy—her first.  Her sister and women friends helped by caring for Lydia; Sonny recuperated and returned to work without having missed a day. After the mastectomy, Sonny experienced lesbian fantasies; the cancer and dealing with the possibility of death made her question how she was living her life. “I wasn’t who I wanted to be.” Sonny underwent a second mastectomy two years later in 1976. “It was,” she says, “just dropping the other shoe.” She continued therapy, and was seeing a man as well as getting involved in a nonsexual intense relationship with Ellen, a former student. Then Sonny gave up both and came out. A former lover had gone to Gay Women’s Alternative; Sonny followed and immediately found herself on the Steering Committee. She remembers a GWA party in 1978 for which she got dressed up in a powder-blue suit. At not quite five feet tall, she weighed 102 pounds. “I was gorgeous,” she admits. “It was my rebirth at 48.” She met Karyn, and within three weeks she was involved, committed. “That was a bombshell—culture shock,” Sonny says. “Karyn just blew my mind with who she was and what she was—the bravest, most courageous, outlandish—and I could match her point for point.” Sonny came out to her daughter. “I was so proud.”
      “Writing was there for me again.” She became actively involved with the Feminist Writers’ Guild in June 1979, and she contributed to the Women’s Disability Issue of Off Our Backs in May 1980. It was during this period for Sonny of blazing energy, discovery of love, and sharing of words, that I had my first encounter with her and—in my alcoholic fog, denial and depression (hidden under the fa├žade of compulsive overwork)—was taken aback by her dynamism and certainty. And it was during the period of my own recovery, when I joined a support group for recovering women alcoholics in the arts, in January 1983, that Sonny, six and a half years after her second mastectomy, once again became sick.
    I write this fourteen months later. I wanted to provide a context for some of the references in Sonny’s journal excerpts—her having joined HIP because it provided 24-hour-a-day emergency and regular care for Lydia, her having spent five years in a lesbian illness support group which came out of a workshop with Audre Lorde and was started with Joan Nestle and Deborah Edel of the Lesbian Hersdtory Archives. I hadn’t expected to discover how much more fiercely than I knew, I respect and care for Sonny, nor to acknowledge how deeply I identified with her recovery. “Write about yourself,” Sonny suggested softly.
      It was no accident that we met; it never is, when people come into our lives. Sonny is my teacher of faith and persistence, in the determination to survive, to recover, and to write. To tell our secrets. And not to have do it alone. Today, all but a few percent of the bone marrow cells are normal. A victory—and an ongoing battle. Sonny is still in treatment, still writing. And I have a new understanding of that voice that once appalled me with its strength. “Joan!” Sonny said to me in a recent phone conversation. “When are you going to teach another workshop? We’ve got to have one!”
Joan Larkin
Brooklyn, New York
April 1984


“I dreamt I wore curtains and veils,
Billows and sails,” says Gerda, “and
Set out on a raft upon the sea. But
the raft bucked and bolted.”
A Weave of Women, E.M. Broner


Part One
                               Seeking Answers
                                                      
Friday, February Fourth—5:35 p.m. [1983]
….And there is suddenly time.
  Cancelled everything not urgent all week, just as I have been letting go of organizational work since September, supposedly to do my own writing work, but perhaps I have been preparing myself for some kind of battle.
    I just hit home and the couch and Shogun every night on TV. I am relaxing with Sanka and cigarettes: hoping to get rid of what’s been going down my throat all week and not coming out the other end! Am hungry and cannot eat: 200 calories all day. Got test results Tuesday—Dr. Warren Lautman wants to see me—low hemoglobin, etc., etc.
   Don’t know why and I’ve got to find out. I’m scared, but the dizziness, the nausea, the exhaustion are all explained now…
Sunday, February Sixth—9:40 p.m.
     A full day of Guild (Feminist Writers’ Guild) work—and letter writing. Wrote so many letters I’m dizzy. Finally some journal time to think on last night.
     Elissa Malcohn is staying with me—since last night and until tomorrow morning. Elissa Hamilton is no more, and I miss her hearty laughter! She’s left Tom. I had to and did stop the endless spouting; we have had a quiet, peaceful day with minimal intrusion on each other’s privacy. Elissa went out for bagels and cream cheese and the Times and we ate through both, and she’s writing. Instead of talking, she produced one of her fantastic poems. (1)
   I’m in a very tired state: the tension of the Seven Poets for 7 Poets reading last night almost unbearable at times. I keep wondering why I do it. For the anthology? I don’t think it will ever come out, and if it does---the work just starts! It’s endless.
     The Benefit was very slow starting. By seven-thirty only two of the seven readers were there. I was sweating it out with the rest: so only Joan Nestle and Jana Harris gave the first half of the reading—but they were terrific!
     I loved introducing the second half of the program. Gloria Anzaldua shocked me by dedicating her reading to me. I think I stood up and bowed Shogun style—Embarrassing!! But I was absolutely shocked and thrilled. I am not at ease with her—have to break through—have to be able to talk freely or it’s just not good. I know we share at least the problem of validating our work as writers. It’s so difficult. There are many differences, but I usually thrive on that.
  The reading went better that I expected. By the second half seats were filled and there was a wonderful feeling in the room. I’m so greedy. I tried to relax and couldn’t, but it was a shared experience and I wasn’t responsible alone. The cookies sold well; pumpkin cake was overpriced, that’s why there was some left.
    Doctors visit tomorrow: I’m frightened of those “low” test results—wondering what else is wrong.
Monday, February Seventh—8:00 a.m.
  Didn’t go to work today, so I’m minus another $127. Three and a half inches of snow was not enough to closes the schools. I gambled and lost, staying up too late and not able to gather myself for work before the doctor’s appointment. Will call and change it to an easier time.
   I don’t know if I’ll feel better after I see this crazy doctor at HIP (Health Insurance Plan of Greater New York). Lautman rages through his patients like a maniac: screaming at the nurse and yelling at everyone in sight—this seems to be his normal self. He gave me nothing to help my intestinal pain, but did request the blood tests: WHAMMY—PAYDIRT! How bad? Is there cancer somewhere again?
   Ah! I could use some laughter and making light! Not taking myself so seriously—oh well! It is there, somewhere –under the cover of destruction and death.
Friday, February Eleventh—6:30
    My Lesbian Herstory “At Home” Reading tonight will be a big BUST. Predicted snow storm began this morning—with six inches due through tomorrow. It’s a dam shame—but it could have happened last Saturday—for our Seven Poets Benefit!
   Saturday, February Twelfth—11:16 a.m.
      The blizzard of ’83. I’m listening to detailed problems of New Jersey, Westchester and New York City. Nine-foot drifts and cars buried under the snow in Queens! Am enjoying the aftermath: airports closed, no buses running, trains sporadic or out on some lines. Will pay for it as soon as the ice/snow starts melting on my roof---and causes more leaks and messes in the apartment. Couldn’t open the door for Sunshine to relieve himself—it looked well over a foot out there. But it’s 72 degrees inside: so cozy and warm that I’m in heaven (after no heat for twenty-four hours—and the apartment freezing last night).
     I was Nuts. Called Joan Nestle and Deb Edel at the Archives and Deb said, “It’s on!” So at seven I showered and bundled into layers, and it took twenty minutes through a fantasy land of painful steps (the illness) but gorgeous snowflakes and no fierce-blowing winds or whipping sleet in the face: it was just fine! TV announcers were telling every one to stay home—cars were having trouble: once the plows came down Columbus Avenue, they (the cars that is) couldn’t pass into the side streets. It was really beautiful out, though, and I wished I’d had company to share the loveliness.
    Once there, I couldn’t believe that about fifteen women had braved the storm. Most of my friends had called to tell me they wouldn’t venture out, but Karyn was there and so was Linda Smukler. It was an audience of younger women.
     Joan and Deb were wonderful as usual. (Have had so many great contacts, like the Illness- Support Group, and projects with them as Lesbian Archives folks.) It all went very smoothly.
    A difficult reading for me: I read work about Lydia and her “banishment” to Kansas because of all our problems together—tough mother/daughter stuff!
MOTHERING BLUES
She comes to me
with tears      temper
the friends she lacks
losses multiplied as if
by hand-held cheap computers.

touches buttons in me
anger at
relentless taking
insatiable demands
like some men I’ve suffered.

Spelling     reading
Music dancing
All my strengths rejected arbitrarily
This wilted child’s garden of verses
Depressing rebellious angry.

Blond hazel- eyed
Dimpled      tall as I
Body firm and budding
Bleeding young as I
Curly-headed daughter
Of a too old mother.

Fantasies come true     she
Horseback rides and
Skates to gym
Minding disappointments
Polishing her nails and
Talking on the phone.

We quarrel like siblings over
Mother love
She would engulf
Annihilate absorb
And smother me       I
Fight her too intensely
Feeling helpless
until we both collapse
laughter and involuntary tears
releasing us from battle
like a sudden armistice.

She will always call me
Mother and complain.    I
Regret she did not know me
In my youth.

     Today my neck hurts—perhaps from sleeping on the couch. Other symptoms: blood clots in my nose, extreme tiredness, remnants of dizziness, continuous constipation, weakness at times during the working day and a problem climbing the subway stairs—although racing up and down one or two flights at work is still manageable. I’ll be OK—will see Dr. Ward Cunningham-Rundles if anything further shows on test results.
Tuesday, February Fifteenth—6:55 a.m.
  Yesterday I called Lautman from work for test results. He’s nuts! Could hear him yelling in the background. The nurse who saw me through my mastectomies is also assigned to assist Lautman. She is terrific. She found the test results and gave them to me over the phone. I am very anemic with no diagnosis at hand. She’ll send the report to Cunningham-Rundles, and I’ll have my consultation with him next Monday at four. I’ll know what to do after that, because I trust him. He didn’t get a diagnosis for Joan [Nestle], but he treats her with caring and respect, and we are out lesbians to him. I remember the first time I went to see him for a check-up in 1978. Karyn came with me, and he treated my young lover as if she were a part of my immediate family, which she was, of course! Wish I could afford to see him more often, but my health plan doesn’t cover doctors outside of HIP.
  I’m tired of being so tired. Rosemary Walsh, my therapist, is right about impatience. It is a dizzying downward spiral. The best I could do was to stop at Womanbooks and get some books/magazines to read instead of those daily doses of soporific TV.
   Am not able to write (excerpt here ) and that’s hard, but it’s just not possible now. Poetry? None—and neither can I do my short stories since I started “Target Practice” and then had to put it into layaway. I try not to accuse myself of being a lazy woman.
From Target Practice
  Zell spent a lot of time on her bed working or reading or watching TV. The rest of the world, and Dorothy the cat, were excluded by a closed door, but special people were allowed entry. Zell could not hear the downstairs buzzer from her aerie, but she knew Sheila was due for dinner.
    Meanwhile, Sheila walked the village streets in anticipation of a pleasant evening with Zell. She stopped at the Pottery Barn, walked on until attracted by the Unicorn shop where she picked up a card for her horse-hungry daughter, and finally crossed Bleecker Street, ringing Zell’s bell from the outside lobby—an elevator ride away from her destination.
   There was no returning buzz. Frustrated, she rang again and again, starting to get worried. “What could have happened?” she thought. Zell was reliable and punctual. This was not like her. She sat on the lobby steps for a moment, then rang again. No response. She walked out of the building.
    “Maybe she ran out for a minute to get eggs or chili powder,” she thought, and walked to the corner to see if Zell was coming. No Zell. Fearing terrible things, she walked several blocks to Zell’s friend’s apartment.
  “It’s Sheila,” she yelled into the intercom. “Can I come up for a minute?”
     In the elevator, she shivered. Was she expected? Was Zell in the hospital?
        “No—I haven’t heard from her today, but she was fine when I spoke to her yesterday. Listen, why don’t you call her from here?” said Deena.
     Sheila dialed the number, fingers shaking and her stomach a pit expecting to be filled by disaster, until, from the other end Zell’s voice said, in her charming telephone sound, “Hell-llo?”
      “It’s Sheila. What happened? I rang and rang and you didn’t answer!”
      “I’m sorry,” Zell said, as if she had just stepped on Sheila’s toe and jumped lightly off again, “I’m in the bedroom with the door shut and I didn’t hear the bell. C’mon over.”
     Sheila was furious! She left Deena’s and walked back in a rage. When Zell tried to hug her as she came in the door, Sheila pushed her away. Zell’s usual response to anger was withdrawal, so she drew back, saying nothing and getting busy in the kitchen.
      “I’m going home,” said Sheila. “Don’t do that,” said Zell, so she stayed, but the evening was a bust for her and she went home early. What kind of caring was it to be locked behind that door when she expected someone she said she loved? Sheila could only judge from actions, and she assumed Zell didn’t love her.
Saturday, February Nineteenth—9:00 a.m.
    Yesterday was my birthday. Now I have sometimes chosen not to celebrate, but this was a really difficult one. So sick—such a rotten day—imagine having a barium enema on my fifty-third birthday—what a way to go! My hemoglobin count is eight (normal for women is about thirteen), but my birthday gift was Dr. Maklansky taking me into his office after the barium mess to tell me, “There is nothing showing of an emergency nature. The report will be forwarded to HIP in a routine manner by next Tuesday.”
   After the test I went to Jackson Hole and treated myself to a bacon, eggs, toast and cherry pie! And then took laxatives to try to get rid of the barium and the food. Seems as if it all went in and nothing is coming out. I’ll be dripping gray barium for days.
Monday, February Twenty-First—A Work Holiday!
   On Saturday I met Gloria as scheduled, but didn’t get to the Guild meeting first. Gloria is a tiny woman in her forties (I think) with a face like a round clock telling the difficult, painful years. Her unique voice with its Chicana accent uses the bilingual speech lovingly, carefully and with respect. We went to the Hunan Restaurant on Broadway and 97th Street and shared fresh vegetables with tofu and stories. She is an intense woman determined to do her writing. Taught high school: administered programs out West, and now is writing (since the publication with Cherrie Moraga of This Bridge Called My Back) (2) and doing workshops all over the country to pay the rent. She’s moving to Mexico next year—says the living will be a lot cheaper there, and she’ll be closer to her family just across the border.
      I envy her the time for her work, but she does have to earn a living. Gloria came back with me to the apartment—very observant—noticed all and was warm and sympathetic. I’m grateful to Kathy Kendall for trying to explain each of us to the other. I like Gloria’s work, particularly her poetry: that poem about the relics of St Teresa is on that made a permanent and lasting impression—a searing set of images more powerful than anything I have read before. (3)
From Holy Relics
…The good Father drew near,
Lifted her hand as if to kiss it,
Placed a knife under her wrist
 And from her rigid arm he severed it
The father Teresa had loved stood smilingly
Hugging her hand to his body…
----Gloria Anzaldua
  Saw Marilyn Hacker at Womanbooks—big hello—she’s over her head editing my favorite feminist magazine, 13th Moon, and its poetry series at St. Clement’s. She needs help with the tasks and I wish I could help her or find some  more women she would accept as workers, but I’m too ill now to be able to do this.
     One of my favorite activities, which I consider a service to our community, is making connections between women I like, who I feel would also like and be of help to each other. It’s an application of the Golden Rule.
    Marilyn is going to Yaddo at Saratoga soon and Gloria off to MacDowell next October.
     My dream! To have a month at such a place: to write and type and dream stories into Stories. And poems—will I ever write another? My muse has deserted me: my energy goes to staying alive!
Tuesday, February Twenty-second—10: a.m.
  No more fooling around. I’m not going back to work until I get a diagnosis and some treatment. Called HIP to talk to the administrator (my old GP whose strengths do not lie in human relations. He has been promoted, like the precept in The Peter Principle, past his level of competence) and his secretary tried to get me back to Lautman’s care. I told her there was something wrong with the way my case was being handled and to get Dr. Herman Nayer onto it pronto. She said that she would look at my file and get back to me if he had anything to say. I’m sure I won’t hear from him, so I’m going  down to the HIP Center at two and fight: I need some specialists, immediate testing and results. And some treatment or else!! According to Cunningham-Rundles, I should be in the hospital right now.
      No pay--I’ve long since used up all my sick days, borrowed the limit of twenty days and taken days without pay—but somehow I’ll manage. I’ve been sick since January 19th. Went to Lautman on January 26th, and today—a month later—I am still undiagnosed and untreated. It drives me wild, and I have the barest glimmer of understanding of how Joan N feels after five years without a diagnosis. I would be raving in a padded cell if it were I. She has survived without the validation of NAMING her illness.
    Is my illness cancer again? I’m terrified. Can no longer bear the stress—must act—get some results! If I need hospitalization then so be it.
    Cunningham-Rundles says I need more blood tests and a CAT (Computerized Axial Tomography) scan. And he called me at home last night to urge me to push. Missed the last Lesbian Illness-Support Group meeting and that has its effect. I’ve packed my hospital clothed, and it feels as if I’m finally serious about what’s happened to my body: exhaustion, hunger, weakness, dizziness, low-grade fever, little energy after the morning hours.
    This is not living: better to give in and do what has to be done. Never mind the job. No Junior High School Assistant Principal is indispensable, and East Harlem will still be there when I come back!
Thursday, February Twenty-Fourth—9 a.m.
    Yesterday I fought and compromised with Lautman. He’ll see me again in one week instead of two (the bastard) and I’ll take the tests he orders. He doesn’t want Cunningham-Rundles involved. Lautman’s soul is deceiving and changeable. You reach out to touch a stuffed teddy bear, and each time it gives you an electric shock instead of the expected warmth and comfort.
    Joan and Deb came over instead of my visiting them at the Archives. I was too tired to go out but showered and washed my hair and felt better knowing they were on their way. They brought chicken and yellow rice. They had gone to P-town (Provincetown, MA) where Joan promptly caught the flu, but they had a good time anyway. She’s back to work, hating it as much as I do because of the illness. Deb is joining the Butch Group—with Karyn and others. Most are in a couple relationship—and I wonder how that affects their perspective.
Friday, February Twenty-Fifth—11:30 a.m.
   I review the pages of this journal and see a pattern of progressive illness emerging. Where will it lead to?
    Joan came this morning with love and a load of books for me to read. Am full of projects again: reading, writing, even plans to type up Target Practice. My absence from my paying job so costly, but I refuse defeat and if I’m sick—at least I can do some writing!
    A telephone call came about the NYC Chapter/ Feminist Writers’ Guild Political forum: so far only two panelists have accepted. Hunter College Playhouse  should be ideal because the 69th Street Armory, where the Small Press Fair will be held, is quite close by.
     Gladys called. She’s more than just a first cousin I grew up with. She’s also a colleague and a friend and a beautiful and bright woman whose approval I have always sought and appreciated. She’ll come with me to face the monster Lautman at HIP on Tuesday.  I need some support, or he’ll be signing my death certificate and disclaiming responsibility to a weeping family.
     After the liver scan, Dr. Samuel Silverstone told me I’m clear. Now I’m frightened of bad results on the chest x-ray coming up. Went to eat at the Gardenia Restaurant on Madison Avenue near 68th Street after the last test. A greasy silver spoon. Had griddle cakes and then ran for the bus uptown feeling awful. Waiting for the crosstown at 96th Street, I almost blacked out, and again in the drugstore, so I cancelled my therapy appointment with Rosemary but had a phone session with her instead.
    Being unable to get myself downtown and back again for my appointment was very frightening: Rosemary’s reassuring voice calmed me, settled me, and I felt better.  Had to consider whether there were any emotional factors involved: was I reacting to returning to the office where I had those 24 x-ray treatments after the first mastectomy in 1974? (I would lie there for the three minutes that felt like hours while the tears kept falling. I knew these treatments were as worthless as I later discovered them to be. And the technicians couldn’t understand why I didn’t think I was “being helped.’
    No, there isn’t an emotional factor here: I know my body and these near blackouts are physical, and terrifying. Rosemary is one of the people with whom I can share my fears—nothing held back!
      I want my sister with me, but something tells me I’ll be needing her later on. I’m so glad we had that wonderful Christmas-time visit. Spoke to Lydia last night and asked her to give her aunt a great big hug and kiss for me (across the miles to Kansas) for my lovely knit birthday sweater. And my daughter and I miss each other, but are grateful not to be locked into our devastating patterns any longer.
   Thank goodness I joined Toughlove.
    (Toughlove is a parent support group in local areas which uses the philosophy of Phyllis and David York. It’s for parents having difficulty with their teenage children, and it kept me sane after Lydia left home. I wish I had heard of it sooner. I became a core group member and even took a weekend workshop with the Yorks, but I had to take a leave of absence which was hard for me.) (4)
Saturday, February Twenty-Sixth—Dream
Keeping One Step Ahead
  There has been a shooting on my train by gay men. I offer to help my conservative colleague, Assistant Principle Bob Kingsley, count the towels on board and lend a hand with the problem of the attack. It’s because there are so many of them (gays). The door opens. I leave and get on a subway train. I am ashamed about the shooting and the huge number of gays climbing on board with me.
    I am in a living room where a table is set up longways—but not as it used to be. There are unaccustomed changes here and I am uncomfortable with them—but I accept them.
    We have been swimming in a bay where the water is not very clean. A woman friend tells me that she and her child were in another bay close by that, but that they had to come out of because of pollution. This is a shock to me because I wouldn’t for a moment have considered going into a filthy part of the bay.
    I cannot find Lydia and there is trouble. I see a huge cloud from fire and smoke and an advancing army. There is no time left. We have to keep ahead of that advancing inferno. I start on by myself. Somehow I have managed to get together the things I need and move ahead, knowing Lydia is safe somewhere and I shall find her in the advancing ranks. We had just run out of time!
       Are the gays shooting each other down with AIDS? I’m ill, too, now—is that the connection? Embarrassment about  the illness. (We take the guilt of illness on ourselves when we are victims, not perpetrators. It’s like women being blamed for our rapes.) The rest of the dream has to do with the changes in my life—Lydia and I having to separate—not living together anymore.
   My Westie’s huge collar shrank after a washing and fits him. Sunshine’s such a honey. Needs a bath and more work, but he’s such good company for me. A good natured pet and I’m glad I’ve got him!
      Joan and Deb went to Philly, and they dropped off another load of books. They’ve been the rock this disintegrating piece of algae has been clinging to! So I’ve got plenty of work to do, and reading materials to learn from. I feel as if I’m malingering and ought to go back to my job. I can remember other times after a bout of the flu, when I’d feel I’d stayed home too long. I have the same feeling now. Virtually no pay check this month—but heck—it’s only money! I’ll manage somehow.
     Audre Lorde’s Zami is terrific: as real to me as life, yet readable as a novel and I’m involved in it, because of her honesty about her experiences as a young black woman and a LESBIAN! (5)
   Her description of Hunter High parallels my own in some ways. For me there the underlying anti-Semitism of some of the teachers, and there was the fat prejudice. I’ll never forget the disgusted look on the face of my speech and drama teacher, Mrs. Popp, as she expected me to fit into an available costume for a pageant production. I didn’t measure up because the long, buttoned dress was too tight. And as a Jew, I was second class, placed even lower on the ladder of acceptability because I studied Spanish instead of French: in a “B” class instead of the “A.” Well, because Audre was Black, the guidance teacher told her to become a dental technician!
    It was a terrible system, and damaging, yet we got a classical education. The good and the bad were absorbed together, and for a long time I couldn’t tell the difference. Contrast Audre:
From Zami: A New Spelling of My Name
How meager the sustenance I gained from the four years I spent in high school; yet how important that sustenance was to my survival. Remembering that time is like watching old pictures of myself in a prison camp picking edible scraps out of the garbage heap, and knowing that without that garbage I might have starved to death. The overwhelming racism of so many of the faculty, including the ones upon whom I had my worst schoolgirl crushes. How little I settled for in the way of human contact, compared to what I was conscious of wanting.
It was in high school that I came to believe that I was different from my white classmates, not because I was black, but because I was me. (6)
--Audre Lorde

Sunday, February Twenty-Seventh—10:00 a.m.
   Laundry and typing work to do.
   Autobiography of Louise Bogan put together through her own work is interesting, but doesn’t deal with her lesbianism. (7) May Sarton must know more about that! Bogan’s breakdowns reminiscent of those suffered by Virgina Woolf—the dichotomy struggle? Louise is one of May’s portraits in World of Light .(8) A traumatic relationship with her mother may have prevented Louise’s full realization of a prolonged sexual relationship with a woman. Of course, this may be wishful thinking. But Virginia broke through—despite the conflict between a terrible relationship with her mother and Leonard’s (over?) protective control as her husband. She may have also been given medication, possible the cause rather than the treatment for her mental illness bouts. Virginia continued to love Vita Sackwille-West to her dying day—but Vita moved on to others.
     Do not like Kay Boyle’s work. I find it depressing, distant and male orientated—despite the female characters. I’m wrong, I’m sure, but just do not have good feelings about it—that’s why my work will never be in The New Yorker.
    In two mailings from the Brooklyn College Women’s Center, I got four copies of everything! They don’t check for duplicates.
    Watched the original M*A*S*H movie last night and the special two-hour ending is on tomorrow night. It was Lydia’s favorite TV program, and after she left I started to watch it as if it were a connection still between us!
     It was terrible to lose my thirteen year old child despite knowing I did it so we both could survive. Did this contribute to my illness?
    Tennessee Williams dead at seventy of choking on a plastic spray bottle cap: what a waste and right here in a New York City hotel. (Medical examiner—“good old” Eliot Gross did the autopsy!) Too scary: reminder of Lydia, at age three and a half, choking on the sour ball Artie gave her at Ocean Beach, fire Island. I reached into her throat and scooped it out, all the while feeling like I would faint.
    That crazy, wonderful summer next to the firehouse. We had the damp bedroom, and my roommate and her children never came until Labor Day. Should have moved into the better room until she came out, but we never did. Have been too meek most of my life—then violent: the middle ground would have been much healthier.

Monday, February Twenty-Eighth—11:00 a.m.
    Called HIP—they “suddenly” don’t give test results over the phone. Gave me a three-fifteen appointment with another doctor. I’ll call them and try to get the results without going in.
    Couldn’t go to sleep last night for worrying. Unable to write or type—here is all this time available for my work, and I’m pissing it away.
     Went to a party in the neighborhood at Marilyn Tessler’s. a nice group of women, but no one there for me until Roz came in.  She looked good to me: the most attractive woman there with her short, paprika and salt hair and her wonderful height, despite her pronounced limp from that childhood accident in a gym. She surprised me—is back in therapy with a woman across the street in the Levitt House: that building is fraught with old and new dangers—Karyn and her ex-lover, the garage where Karyn kept the convertible we both used while we were together, Lydia’s best friend, and now Roz every Tuesday evening at 6:30. Said she’ll call me.
     I have to be careful. Just give her the Christmas gift of soap from Edith and let it go at that. Don’t want long talks on the phone; don’t want extended contact. Just want to make peace. None of us should be held to old stupidities!
Impasse/a certain stubbornness
Not aging
I hold my fears too close
For change.
Wrap them around me like a robe
Dragging edges
On the ground
Wednesday, march Second—6:40 p.m.
   Everything is suddenly moving very quickly. After eating when the tests are done, I am blacking out on the streets: had to cab home today. The bone scan was negative, but Lautman said if I’m not better to get into Mount Sinai Hospital tomorrow through the Emergency room: he would have me admitted. Mount Sinai is a familiar place for me: I’ve been there five times before and I feel secure there, though I monitor my treatments….
I have a feeling that all the people I care about, and those who care about me, will come through for me as soon as they hear the news. I have a fantastic support team and I am a very lucky woman!

Notes
1.       6 February 1983
Elissa Malcohn
“Wreck Beach”
(A nude beach by the University of British Columbia, Vancouver, Canada)

“Wreck Beach”, B.C.
Where I walk and breathe in foreign land,
Over the border, the wind on my skin
In the folds of me that never breathed before.
Wreck Beach, nude beach,
I chat with a man about sharp rocks
Under soft feet, the cushions of seaweed
Pockets of moss.
He is a pleasure, my eyes are delighted
With him, virile statue of warm livingness
Content with simple talk about the rocks,
Content to part by avenues of sea.
My husband in the shadows
Sees me turn, sees me wave, waves back,
Tries to talk me out of my nakedness
And back into my clothes.
I bend my spine and walk
Arms akimbo, legs parted, to the water,
Ocean friend, lover in blue,
Seductively warm against snow-capped mountains.
Wreck Beach, why Wreck Beach,
Why Wreck as in ruined as in torn asunder
When I elate, out of my husband’s shadow,
Out of my husband’s home, out
In the wind, over the border in a new physic land?
Wreck Beach, harbor of nuditiy,
Lapping thoughts like lapping waves,
Yellow sun on bonecolor beach
And we are all exposed here.
                  c. 1983, Elissa Malcohn
2.  Cherrie Moraga and Gloria Anzaldua, Editors, “This Bridge Called my Back: Writings by Radical Women of Color (Watertown, MA: Persephone Press, 1981)
3. Gloria Anzaldua, “Holy Relics,” Conditions: Six (PO Box 56, Van Brunt Station, Brooklyn, New York 11215, 1980) p. 146.
4. David and Phyllis York, “Toughlove,” (New York: Bantam Books, 1982).
5. Audre Lorde, “Zami: A New Spelling of My Name,” (Trumansburg, New York: Crossing Press Feminist Series, ed. Nancy Bereano, 2nd edition, 1983).
6. ibid.
7. Louise Bogan, “Journey Around my Room,” (New York: Penguin Books, ed. Ruth Limmer, 1981).
8. May Sarton, “World of Light,” (New York: W.W. Norton, 1976).



“What is there possibly let for us to be afraid of, after we have dealt face to face with death and not embraced it? Once I accept the existence of dying, as a life process, who can ever have power over me again?”

Sonny and Karyn, in LHA, 1980s

Part Two 
                In the Hospital

Thursday, March Third—9:45 p.m.
Holding Area of the Emergency Room
    This is not the way to get into the hospital! Unless you are bleeding or unconscious—forget it!
    At eleven in the morning, Karyn, Marge Barton and I started out. Lautman said to rush: he’d called an MD there to examine me. We got here in fifteen minutes, and it took four hours of waiting before I saw a doctor.
     Gladys relieved Karyn at five-fifteen (Marge had left at two.) At seven-thirty they brought me to this holding area because there were no reported beds available. The resident said I needed an IV and a blood transfusion. I said No; it would cover the symptoms.
    I  didn’t believe it when I spoke to Lautman on the phone and he said that emergency rooms were for emergencies, and if I didn’t take the blood they would send me home. Lautman must have been frightened by the Resident insisting on what he felt was needed  emergency care. I know how sick I am and I don’t feel as if I’m dying. But if I’m not diagnosed soon, there’s a chance I could die from whatever is causing this progressive anemia. If I accept a blood transfusion, it will only mask the symptoms! That is, I’ll get a normal red blood cell count, and  it might result in any test given me coming back falsely negative. Then the whole cycle would start again, and I’d be home trying to run around taking more tests. I’m holding out for a diagnosis without covering up or eliminating the symptoms of whatever it is that I have.
      The Lesbian Illness-Support Group was meeting, and they called to cheer me on. Somehow—some way—I may yet get what I need: not take transfusions until after diagnosis. Anyway, I feel  very supported and very strongly that Lautmann is OFF.
   Now, after more than ten hours, they have a room for me: they stopped insisting on the transfusions, and they will be taking me upstairs.
 10:30 p.m.   A Short Story
EMERGENCY RESORTS
     I’ve been a patient at Mount Sinai Hospital five times before. Memory serves me well: I forget the pain (mercifully we don’t remember actual pain) and I recall the fine cuisine.
    Having come down with progressive anemia, its cause undiagnosed a full five frantic weeks, I knew I needed to get into a hospital but my HIP doctor did not concur. Dr Strong kept repeating that time was not a factor in this present illness. With the help of my cousin Gladys acting as my personal patient advocate, we convinced Dr. Strong that hospitalization might be advisable. At first he wouldn’t cooperate, unable to locate the blood tests done the week before.
     “Take another blood test,” he shouted, “It’s no big deal! Come back and see me next Tuesday.”
     “Dr. Strong,” I said weakly, “I don’t think I can wait another week.”
      Just as we were about to leave, my cousin spotted the blood test results in the waste basket.
      “Here they are,” she said triumphantly, “thank goodness they don’t use shredders in this place.”
     “Right you are! That’s it. Ok. Wonder how it got thrown out,” said Dr. Strong. “Mmmnn—this is pretty serious. I’ll guess I’ll put you on the relatively urgent list for Roosevelt Hospital.”
    “I’m not ready for that place yet,” said I. “Maybe  next year when the food improves. I hear it’s on its way up. For now, I want to go back to my old stomping grounds, Mount Sinai.”
   “You—you’re driving me C-R-A-Z-Y!” sang Dr. Strong, but he yielded because my cousin Gladys is an extremely attractive woman who is straight and in his age group. Also, he is still attached to Mount Sinai as a member of its teaching staff. He called Mount Sinai admittance, telling them that mine was a most interesting case and he might bring his students on rounds.
     Yes, I was now on the relatively urgent list, which  promised me a bed at mount Sinai within two weeks, but I needed one NOW. What to do?
     Gladys and I left the center and stopped to plan strategy at Mr. Jennings’ Ice-Cream Emporium. We both felt the need for some immediate sweetness in our lives and ordered huge ice-cream sodas with extra syrup. By the time we left, we had a plan.
    The next morning, supported by two friends who arrived before sunrise, we called and woke Dr. Strong and told him I was in terrible shape.
    “Hurry,” he said, “I’ll alert the emergency room doctor that you are on your way.”
     As he hung up, I could have sworn I heard him start to snore. Fourteen hours later, I was wheeled into the holding area of the emergency room, where a sympathetic nurse tried to talk me into accepting an IV and a blood transfusion ordered by Dr. Strong.
   Dr. Strong? Blood transfusion? If I agreed to that, it would screw up all the remaining tests, and I'd never get diagnosed--didn't he know that?
   "Let me talk to my doctor," I demanded.
   This great physician of mine made a strong case for the treatment prescribed, and gave me an ultimatum: "Emergency rooms are for emergencies," he said. "Take the treatment or go home!"
    Then he hung up on me, and I realized I had won. If I needed a transfusion so badly and refused it, how could they send me home? I might die and my family would sue. The couldn't send me home. I was OK. I was in.
   Several hours later, I was settled in a private room ( all that was available at that hour, but I'm a semi-private room patient--that's what my insurance will pay for), and I was made a guest at my favorite NYC hospital/ hotel. I was served a cold meal since I had not eaten much all day. It was a disappointment. The silverware was not even stainless steel; it was plastic, and the quality of food was not as good as I remembered it to have been in 1976 when I had my second mastectomy. I wasn't so sure I had come to the right place after all. With some unpleasant tests scheduled for the following morning, I was definitely getting cold feet about the whole thing.
    I called St. Vincent's Hospital to find out about their food. The public relations department, on a pre-recorded tape, boasted twenty-four hour service and a new Oriental wing featuring Japanese brush paintings on the walls and served to order Chinese cuisine in all private rooms. Before I could wonder what kind of food was served in semi-private rooms, the information, still in that high-pitched male voice (I guess a lot of gay men and lesbians work there, since it's in the Village), was delivered cheerfully, " In our semi-private rooms, we are happy to provide Chinese fast-food take-out service. It's good."
    They have Catholic doctors and nurses at St. Vincent's and I'm Jewish, so I decided I wouldn't transfer there. Instead I decided to get some sleep and call Lenox Hill in the morning.
    Somewhere in this huge metropolis, I thought, there must be a hospital that served a civilized cuisine. I would find it.

Friday, March fourth—2:00 p.m.
   Am in shock from Lautman’s visit at one this afternoon. He talked about his ex-wife with venom and then pointed to my writer’s diary.
   “You’re just like her—a fucking women’s libber. She was a psychiatrist who had this whole stupid approach. I don’t care what you feel about your body; I’m the one practicing medicine. You don’t know a fucking thing about a work-up—you refused Dr. Glass this morning, and now I don’t have the bone-marrow test.”
    (But he had promised me Dr Nathaniel Wisch. And I had contracted for Wisch, not for any of his partners.)
     “You’ll do as I say—or else we get nowhere fast.”
       “I’ll be a good girl,” I said, trying a new tack.
        “Let me explain,” I said, “I just feel that I want the bone-marrow test last—I’m terrified of it, and I don’t want the test if I don’t absolutely need it.”
        “You’ll do as you’re told,” he said, “and you’ll take another chest x-ray—it’s good to compare them—and I’m going to examine your insides.”
       With that, he settled me on the bed, with Ms. Chou, mu nurse, standing by. Then he rammed his gloved hand up my vagina. Pain—so bad that I screamed—realizing what was happening.
       “You fucking bastard—you fucking misogynist! You’re doing this on purpose to get back at me!”
        “My fingers are thick,” he said.

He got back at me all right. He paid me back in pain for every ounce of independence I tried to maintain. In the end, it is Lautman who has the power. No one to switch to on staff here from HIP—they are all at Roosevelt/St Luke’s. I still need him and he knows it. My anger and frustration have nowhere to go, and the rage keeps mounting inside of me.
    What can I do? Who would believe my story? Women are still being put into mental institutions for violent behavior while men land in jail. I fantasize killing him—but it does not help. He raped me with his medical degree protecting him, and I’ll carry the scars for some time.

Then I think about the women who have chosen to surround and support me through this ordeal. I let my thought move to the loving relationship that are sustaining me: Joan and Deb, dark-haired Joan unable to say “no” and light-haired Deb who keeps a calendar for both; Karyn; Marge who’s almost half the person in weight that she was six months ago, when her health was threatened by gross overweight; Isaaca, who reads the mail as if comes in weekly to Gay Women’s alternative and cracks us up; Gladys, whose beautiful curls I used to pull when we both were young, until she learned to avoid my approaches; and even my aging mother who has not the strength she lent me eight years ago when I suffered my first mastectomy. Even the twice-broken lover relationship with Roz—who will come back to help me—I’m sure of it! Somehow the pressure is eased, the sobs diminish, and I shall sleep.
Sunday, March Sixth
   Yesterday at five, Lautman came by while I was in the shower. He was in such a hurry that he tried to walk in on me—but I literally threw him out and talked to him from behind the door. He was concerned that I be able to get through bone-marrow test and then four hours of the GI series. I’m concerned, too! He said my hemoglobin count was down to 7.5 (normal for women is around 13), and I’d need a transfusion as soon as the tests are done.
     In the evening, on a hunch, I called Charlotte Balfour, who lives close by, and she came over late on a special pass. Somehow, because she looks the part—tall and slender with short cropped hair and rimless eyeglasses—the nurses thought she was my consulting doctor. I didn’t argue the point—so she stayed until midnight. Had a great time chatting with her, but she’s having some problems after eating and may need a GI series. She looks fine—was not loving or huggy, and I miss that—but she was very, very friendly, and said she’d come again. (I met her in a writing workshop given by Esther (E.M.) Broner, and was immediately attracted but she was involved.) 
How Do I Say thank You?
--Debbie brought raisins, chocolate and a mystery story book.
--Gladys brought oranges, ice cream, and Tante Tillie’s cookies.
--Karyn came with a poster of Eudura Welty, Maureen Brady’s novel Folly on loan, and cake with almonds.
--Carole Leudesdorf and Dianne O’Connor brought beautiful flowers.
--Joan carried in bananas and the lesbian-oriented Orchidias.
--Anne Corey and Linda Grishman put three lovely flowers into a vase and also gave me soap and scent.
--Essie Elias and Leslie Bernstein brought the Life-Savers and Coke I wanted.
--Junior high 13’s Sunshine Committee sent flowers.
--Isaaca carried in a stupendous red tulip plant, a gift from Gay Women’s Alternative, and Diet Coke and diet 7 Up.
--Judy O’Neil dropped in (she comes often—works in a lab here) and brought me the paper.
There is a wonderful conspiracy here keeping me sane through this ordeal.

Tuesday, March Eighth—6:45 a.m.
    Couldn’t write yesterday, so am reviewing the day since I woke up early and couldn’t really sleep much.
    Karyn came at seven in the morning and went with me to X-ray in the basement. When they handed me what they called a grape barium shake, I shook my head and asked for chocolate. The wonderful doctor shook her head and said NO—they had no chocolate but they did have strawberry for the children, and she’d be happy to mix one up for me. She did, and I got through the test with flying colors (pink for the shake and green for the way my stomach felt) and three pounds of barium!
   Karyn then left for her doctor’s appointment—she didn’t talk much about it, but the diabetes, compounded by Graves’ disease of the thyroid, is not at present under control. She is giving me such wonderful support, but has trouble accepting support in return. That has to change for her. She has made her appointments here at the hospital instead of at her doctor’s offices, so she could also be with me for my appointments.
    Karyn was back at five, and with me when Lautman showed. He said it could be an innocuous blood disease or bone-marrow cancer.
     The pressure and tension are building, and though we are getting very close to a diagnosis, I’m terrified. If it is the cancer, how long do I have to live? (Horrible!)
     Then I met Wisch and he took the bone-marrow test. He described each step of the operation as he performed it:
“I’m looking for a likely
Area on the left side of
Your pelvic hipbone to go
Into. This is fine, just fine,
Down here on the lower
Back. Your being thin makes
It nice and easy. I’m going
To give you a shot of
Novocain there. Now I’m
Going to follow it with
Another, deeper shot. We’ll
Wait a few minutes for all
That to take effect.”

“Now I’m going to put a
Needle right through the
Bone and into the marrow.
You’ll feel some pressure
Now as I twist the needle
To catch some bone marrow onto
Its hook.”
(I feel a lot of pain and
A lot of pressure as he
Bears down, pushing my
Body deep into the mattress
And then twisting the needle
And pulling. I don’t know
How long this is taking, but
My eyes are wet with tears
Spilling. He finally pulls the
Needle out.)

“There now—a fine sample
And it’s over! You can
Relax now.”
   It was horrendous. The knowledge and feeling of a foreign object invading my bones was unbearable. It certainly was the worst test I’ve ever had to undergo, despite Lautman saying, “It’s nothing.” I never want to have to go through this again.
   Karyn was there, silent and helpless—watching.

   I felt the need to talk to Ava Alterman, who has gone through this test, but there was no answer when I called. Will try to reach her this morning. And I want Toney Salmere for a crises counseling session. Her work in the sisterhood of co-counselors class that I took was wonderful. I know she went on to become a teacher, and she’s the one I want. These two women lend me inspiration: Ava, Living with Hodgkin’s disease, and Toney, devoting her life to the healing of women.
Wednesday, March Ninth—6:40 a.m.
   I’ve been up before dawn almost every day: will have company later—am realizing that I’ve not been left alone from early morning to late at night—and sometimes over night when things get tough.
   How do I say “thank you” to all these wonderful women? It’s time for that now—no matter what happens next. Thought of an add in Womanews listing every one’s name—but that would be hard to do. Have to think of a way to word it, so that it would be practical. It could go into the May issue, and Karyn could get it in, and Nancy, who worked so long with Jane Chambers before she died of that brain tumor, could help with the wording.
Friday, March Eleventh—6:00 a.m.
   It is so hard to write the reality: I am not Audre Lorde, but I wish she could lend me some of her courage now! I’ve been in SHOCK since Wednesday’s call to Wisch’s office. Gladys, as impatient as I to get the results of the bone-marrow test, made the call.
   Dr. Glass responded to her call, and poor Gladys was the one who had to give me the terrible news—repeating his words over the phone like an automaton—except for the very pained and caring look on her face, “It looks like breast cancer cells in the bone marrow.”
    I tried not to think, but my inner voice spoke anyway. “You’re going to die soon. Maybe a couple of years at most, now! You don’t believe it—how can it be true, but it’s real, it’s happening right now and it’s the truth.”
    Panic…I had to fight panic and a mounting hysteria. I felt as if I were dreaming and that soon I would wake up, and it would have been only a nightmare, and I would have a serious but benign blood disease. I would be OK and I  wouldn’t be as good as dead—I’d have many good years ahead of me! Many!
   We called Karyn and Joan and Deb, and they were there almost instantly. Karyn stayed the night—a restless one with four hours sleep for the both of us. She massaged me and kept me from hysterics (but these terrible crying and raging fits come back when I’m alone—I had expected a benign blood disease—not the return of the KILLER). Karyn is truly there for me. She was with me when Wisch came in to explain my situation: “serious condition but treatable with ‘medication’ for the rest of your life.”
     That means chemotherapy the rest of my forever—unlike Ava, who with Hodgkin’s, is in remission and off chemotherapy now. I’m glad she’s in the Lesbian Illness-Support Group: so young and yet she is a model for me! (I keep my mind off myself and on others as much as possible.)
  The doctor outlines the program: two weeks on chemotherapy and two weeks off, or one month on and one month off. Said that the radiologist from HIP could administer the treatment.
    But Gladys got a suggested consultation through her sister-n-law, Linda, married to my “baby” cousin Davey. Linda is a friend of Dr. James Holland’s wife, who recommended him. He’s very well known and an expert on chemotherapy. His Fellow (one of many) came in to take my history while Gladys and karyn were there. At five the Fellow said Holland would be there in half an hour.
     While we were waiting, Lydia called, and said she’d give up her horseshow to come to New York on her school vacation. She and Edith are flying into the city from Kansas tomorrow! I guess it’s because of the rotten diagnosis. I don’t want them coming for bad news. I want to be able to celebrate—not face horror, horror, horror!
    Then Lautman came, and Gladys and Karyn went out into the hallway to do battle with him—trying to get HIP to pay for Wisch. I covered my ears and cried.
     Two hours later, while Gladys and Karyn waited with me anxiously, Holland breezed into the room. (He’s the highly polished Chief of Neo-plastics Research here, and known all over the country, if not the world.  He gets a lot of grant money and heads a huge department. He’s written the book on chemotherapy, and unlike, Wisch, doesn’t earn what he could in private practice, but he has a lot of status and power instead.) He was absolutely charming, though is reputation as top man also includes the description from some women’s networking, of being “very tough to work with and for.” {Author’s Note: He did not ever charge for the consultation.}
     Holland reviewed the choices: standard treatment versus a research project with the drug Adriamycin. (Resesarch project is a fancy phrase for experimental treatment.) He said the reason it took so long to come from consultation with the Fellow was that he reviewed my program eligibility, and I met all requirements.
      It may be the only choice I have. The statistics I got from Wisch for standard treatment were terrible: 75 percent chance of responding to the chemo, and if I did, a 25 percent chance of living more than five years!! That’s standard treatment. A life expectancy of two to four years!
   This Adriamycin is the most powerful breast cancer drug known. Results are uncertain, because there are only thirty-one other cases in the project, which started one and a half years ago. My chances for total remission were given as 20-30 percent—not good—but I’m supposedly starting with 3 percent normal cells, I can’t believe that 97 percent of my bone marrow is diseased. (Cunningham-Rundles said that an early diagnosis would have made a big difference, and I understand that now!)
     Adriamycin side effect: hair loss, possible heart damage, a host of possible infections; mouth sores (stomatitis); stomach sores (gastritis); esophagitis…all confusing. (I wish they would simplify all the ‘itises.’) In all a very tough regime. Can I survive it?
       Have to quit smoking. Have to get Cora London to cut my hair very short, if I decide to go into this program—so I won’t miss it so much. Holland thinks I have more cancer cells in my breast scar: I think it’s the psoriasis, and that I need a dermatologist. They’ll do a biopsy. Dr Daniel Luger, my old surgeon, could do that.) I may also have infected nodes in my abdomen. Holland will have me tested but he says the “Adria” will keep it all under control and possibly eliminate it! (Author’s Note: These incidents added to my anxiety at the time—but the biopsy turned out to be negative, and there was no cancer found anywhere else in my body!)

Same Day: 10 p.m.
     Dying seems easy—it’s living on now that is so hard! I want to let go—am so tired—but there is a lot of work to be done: the Anthology of the Seven Poets, my own work, and more. And there is my family: Lydia needs me for as long as I can stick around, and my sister Edith needs me, and my mother, at seventy-five, is my child though she will have to tend to me later on is this illness, and no parent should ever loses a child, no matter the age.
    My family of choice is counting on me too—all those devoted women—I can’t let them down…I am frightened by the pain I have to suffer, and don’t want my loved one having to watch me go through that pain! But—the reward will be time in remission!!
     No choice here: I have to keep plugging.
     Am exhausted from visitors all day—but Toney gave me a crises session in co-counseling  and it renewed my strength. I’ve loved her ever since we took the co-counseling class together. Toney was the only one who wore skirts all the time. I thought that was peculiar—but of course nothing will ever get me into skirts or dresses again—now that pants are acceptable. Anyway, after Karyn and I broke up, I let go of the sisterhood of co-counselors.
    I’ve been here for nine days—thirty-five more to go! Am drawing inward—letting go of the outside world—and creating a special environment here at Mount Sinai. It’s stormed all week: been bitter cold and icy-winded, and friends have still been coming.
      Inside I am warm and comfortable and feel secure, knowing this is where I need to be. I use the pantry at will to fix coffee and tea; I have my little refrigerator that Deb said was so full it would feed an Amazon army—but before it could explode she cleaned it and threw away all the squirreled stuff that had spoiled.
     I feel quite Proustian—admitting only that part of the world I want and need—shutting out the rest. Am turning inward, preparing to do battle once again with this monstrous disease.
      I decided to enter the experimental program (as if I had a real choice: there’s nothing else going on the whole country) so I’ll take a tour of Klingenstein Clinical Center and 6 North, where the program is usually administered, and I’ll meet Dr. Roy Jones on Monday.
     Marilyn H. was responsible for me call from Bertha Harris. After she visited me, Marilyn called Bertha and her lover, Camille clay. (Camille, after thorough research by them both, went through treatment for breast cancer in Texas, far away from friends and supporters. But she’s doing well now.) Bertha and Camille contacted me to talk about choices. We’ll talk more.
    Yay for Marilyn—she came through for me.
    Am too tired to write anymore, though there’s so much I want to record that has not seen pen and paper. Must get to bed and try to sleep or at least flake out!