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.
   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.
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


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