"Stage V: A Journal Through Illness" by Sonny Wainwright (Acacia Books, 1984): Final Installment

      I watch pigeons on the roof crawling in and out of their aerie pipe-home. I can see, if I stretch my neck, a partial view of Madison Avenue from a window “belonging” to the next cubicle—empty for now, thank goodness—for only a plastic curtain separates the two “rooms.”

     But—wonder of wonders—there is an east window in the corner cubicle from which I can watch sun rises over the Triborough Bridge and the East River—as long as no one is put in there!

     There is an old unused nurses’ station and a little refrigerator I can put my stuff in! the kitchen/pantry is down the opposite end of the hall (but, it’s very well equipped even to a microwave oven,) sometimes hard to get to.

     Feeling rotten; because of the nose clots, esophagus burnt, couldn’t swallow or breathe for some days, but here I am now, drinking coffee and waiting for my sluggish bowels to react. It’s all shit here: if you don’t, you’re in deep, deep trouble!

     Joan and Deb off to the Jersey shore on vacation. Am glad for them; just wish I could be going off that way. And I shall. Want a week away with Karyn, but she may not want or be able to go….We shall see.

     Last night Deb massaged me and tucked me in, and off to sleep I went. Had the best night yet! Robaxin helped me to relax.

       Oh! The useless and unending pain. One of the nurses with a sour expression constantly on her face came to take blood and was careless, ignoring what I told her. She insisted on going into the thumb area vein, which predictably, collapsed. I sent her away. Her parting words were, “OK, I don’t care. It makes my job easier.” Another nurse whom I trust did the job in two minutes flat, and it was painless. The thumb stick still hurts. Maybe I’m lucky because this was only the second bad time I’ve had with drawing blood since March third.

     I’ve been here twenty-four days now….

     Judith finally brought me the poster she made for me: I didn’t get to see her, but there it was on my bed: “Home of the Red Devil,” each letter illustrated with a snake-like figure and a very professional job. The snake as old female symbol is fantastic, and I’ve got it hung over my bed.

    It’s painful to me that some of my friends have not been able to visit with me, but I try to understand and remember that I had a lot of trouble in my thirties with setting foot in a hospital. I suppose a lot of people have that problem. When my Mom was sick, I visited her only once in such a depressing hospital environment that I ran after ten minutes and didn’t return. I got over it when I came into Mount Sinai for Lydia’s birth.

     My “flower garden” needs weeding and watering.

     The first platelet transfusion must be working: I’ve had the energy to write. Can’t believe that so many women have tried to donate their blood and become part of an ongoing support team, staying on call for the platelet removals. The donors get attached to a machine that swirls their blood around, removing through one arm, only the part that helps to clot the blood, and then feeding the rest back through the other arm. And donors never miss the platelets, because a normal body has hundreds of thousands that are constantly replenished. We have about ten women cleared now, including Joan Larkin, poet and publisher, my friend and sister sufferer of single parenthood!

…..The hours of work that Debbie and Marge put in on this are uncountable.

      Now I have to brush my teeth, gargle the sores on my tongue and in my mouth, and get ready for company.

 Monday, March Twenty-Eighth—9:50 a.m.

      Energy down again—my white count must be very low on schedule. Spoke to Gladys—she’s so impressed by me friends and thinks the community is fantastic: “But they can’t all be so nice, so intelligent, so….”

      I get such a kick out of Karyn.

      She keeps questioning me, “Are you saying what you want/need?”

      I say, “Yes!”

      She says, “Last night, you didn’t fall asleep while I was massaging you, were you angry?”

     “No, not angry,” I reply, “amused. Every time I was ready to drop off—you woke me up again with your talking.”

       But that is how we are together: talk as thick as a bowl of spaghetti.

       I hear that people have been calling for platelet donors at a lot of movement functions as well as on WBAI Radio and Cable Channel L. It seems strange to be the victim of an illness needing help, instead of making it as a poet and writer! The response has been overwhelming, but I’m embarrassed by the publicity—breaking the societal rule of keeping illness invisible.

     Marge, Roz and Deb still collecting volunteers—alternates etc.. They seem determined to keep me alive! Joan L. is giving platelets at one today—I should get them soon after and expect to come up with a great poem tomorrow!

    Chemotherapy—I’m gaining weight—will be the first patient who arrived thin and left the hospital as a balloon. All on baby food: Mom’s pureed chicken and soup with carrots, Norma Kraus’ vichyssoise, and Linda G’s homemade chicken and chicken soup—shlepped in gigantic glass jars and devoured while I could eat regular chicken! (Linda’s talent will bloom, I think, when she writes about her life as a white, Jewish, South African child growing up lesbian.)

     The hardest part of the day comes about nine in the evening. I get the weepies—it is reflexive: I seem to have no control over it.

Tuesday, March Twenty-Ninth

    Vacation from work for NYC Board of Education pedagogical staff and all the kids—for all but me. My work here is so rough….It helped a lot to read Morris Abram’s chapter on his leukemia (then years ago) from his The Day is Short.” (3) His writing is not a literary feat, but his story is heartening in that he overcame! And the struggle is/was so terrible—as he describes it—as I must keep fighting for it and believing in it—keep fighting, asking, plugging, and be disliked or hated, if need be, to protect myself in the hospital. He went through some very rough chemotherapy, and then questioned the continuance of one of them as counter-productive. My therapy is all Adriamycin—as long as my heart can take it. Then I would have to get other chemicals to finish the job. The hope is to be able to go through the full course of the treatment: the worst is, for me, the best possible….

     Today, my mouth is so infected and sore above the inside, upper teeth, that I feel like an infant cutting its first set all at once: painfully, acceptingly, yet without rationale attending the whole process: it just IS! Still cannot swallow regular food.

Wednesday, March Thirteenth

      48.6 kilograms x 2.2 equals 107 pounds. Some water because my rings are tight.

       I had a visit from the hospital psychiatrist yesterday. He wore a yarmulke, and he offered solace and participation in a study of chemotherapy patients.

        With Joan there, my level of lesbian/feminist and Jewish consciousness was high, and I spoke my mind:

“I think you should know I’m having difficulty with the fact

you’re an Orthodox Jew, because of what just took place in the NY City Council.

The Hasidim were vicious in their attack against the Gay Rights bill. I’m a gay woman

and Jewish, and I associate you with that fiasco!”

     He turned red in the face, “I believe that I’m capable of separating my religion from my work as a psychiatrist

     He then proceeded to prove that he couldn’t. I introduced Joan a one of the founders of the Lesbian Herstory Archives and Jewish, and said she’s act as an observer. I would agree to the chemotherapy study if I could comment about the Gay population in the hospital, most of whom would not be free to talk openly about themselves.

       “Were you ever married?”

         “In a way. I’ve been married several times, Most often—to women.”

        “How long were you married to a man?”

         Joan and I both reacted. We said, in effect: “You didn’t hear the answer because you have only one category. Don’t you understand that a lot of us might have same-sex ties as strong as a martial relationship?”

    He got very red in the face and said, “It’s a statistical study, and we’re only interested in certain kinds of information.”

    “That’s the problem,” I answered. You’re not framing questions to include anything except heterosexually-oriented responses.”

     His next question: “How has being ill affected you?” I couldn’t believe he asked that. It was like asking a recent amputee, ‘Do you miss your right arm?’

     His questions weren’t appropriate to my experiences, and he was terribly uncomfortable with my responses. This man had offered me his services as a professional, but it was as if I were lost in a foreign country and had been given an interpreter who couldn’t speak English!

      “Who in your family is supportive?”

       “I have to tell you that the word ‘family’ has to be defined. My family is huge. It includes a whole network of women and lesbian/feminists, as well as my blood relatives.”

        Predictably, he zeroed in on sibling, parents and other birth relatives, listening to my answers and the writing down only what he wanted as a response. Though his pen censored, his ears had to hear me.

      After he left, both of us felt I had done the right thing in agreeing to take part in the Study, despite the frustrations.

      This place, difficult enough for me to survive, is made even more difficult by the large number of Hasidic patients and visitors dressed in their 18^th century flowing garb and limited by their prejudices. The women in their sheitels are my sisters, and soon I too might be wearing a wig, but to cover a bald head, not as part of a religion I was born into. How I wanted to embrace them—how impossible this was! The Hasidim—Jews like me—had suffered in the Holocaust, but suffering and bearing hatred and prejudice is no guarantee of enlightenment and tolerance. Under different circumstances, they might have stoned me to death and gone home to their children feeling virtuous.

    I could picture the scene: a standoff in the hallways of this hospital. My army of dykes vs. the Hasidim—long beards and payess word-duelling cropped female heads! Bewigged women raising their long-sleeved arms to God.  Nurses and doctors going about their business at first are stunned by the fray. Then they tend to their patients and an occasional casualty in the hallway.

    At eight in the evening, when visiting time is officially over, the two sides retreat, and the hallways are once again quiet, available for my walks. A sister supports my weakened  body, and we stroll up and down, down and up the corridors, encouraging my sluggish circulation, and reviewing details of the battle.

Thursday, March Thirty-First—9:00 a.m.

   Told them again that I want only the special IV nurses to draw my blood—and when it’s best for me –not for the staff. Monica, who guided Gladys, Edith, Karyn and me on the tour of KCC6 North and said, “No patients in the pantry,” spoke shit again when she came in and pronounced, “At night we may not be able to get the IV Team.” Nonsense, they are on call twenty-four hours each day.

… I cannot believe this place—and this is one of the better units!

Friday, April First—April Fool’s Day!

      Roz came last night—she was gentle and tender and gave me a massage and a lot of love. And she’s coming back tomorrow and bringing whitefish salad (I can eat again—Yay!). She was terrific, and I find myself responding with gratitude and much caring.

       The only record I have of this past month is in this journal. I have no real memory of the four weeks that have passed—Winter into incipient Spring.

        Must (only if I am doing well) submit to another bone-marrow test on Monday—Jones says he will try to make it less painful than the first one.

…I fantasize the cancer all gone!

   Jewelle Gomez’ “What Is Night?”—very enjoyable reading. Can easily be published in science fiction magazine.

Saturday, April Second—8:00 a.m.

   Roz due any minute…

   Surprise! It should have come on April fool’s Day to make a point, but I’ll take it today: I’m going home early—was not expected to do so well. Will leave tomorrow morning around ten after red blood transfusions today. They take about six to seven hours. Marge and Karyn will help me home, and I asked Janet Schur to bring her car. And the blood clots in my nose are gone now! I guess that as soon as my count went up, they dissolved. And I thought they might be with me for all my forever! I can’t believe I’ll be able to go to GWA on Wednesday night for Judy Grahn! That’s almost unbelievable, and I’m up there in the clouds just thinking about it.

     Am feeling slightly nauseated, despite the good news—don’t want anything to disturb the truce—neither eat nor drink nor smoke. Need to do some walking in the hallway.

    Want to write more, about all the important things, but when I start—I lose my original thoughts and go on to mundane matters. More often than not, the big issues of Life and Death don’t figure as much, once they have been dealt with, as the day-to-day survival. And, certainly, the support I’ve been getting: the women visiting me, calling me, and writing to me has allowed me to live with the physical pain and emotional trauma in a way that feels shared, as if the battle is for more than just my own life. I wish there had been a lesbian/feminist community in the fifties, when my choice of career and lesbian lifestyle seemed almost entirely an individual one, and even the small group I was part of, usually as half a couple, felt we were doing something shameful, unacceptable, unwomanlike…

     It has been particularly good and comfortable for me to have been OUT as a lesbian, as a feminist, as a totally woman-identified woman even while accepting the necessary medical treatment from a patriarchal institution. There! That’s something bit to put to paper, and there—there comes Roz.

  Notes

1.       May Sarton, A Reckoning (New York: W. W. Norton, 1981).

2.       Marilyn Hacker, “Iva’s Pantoum,” Taking Notice (New York: Alfred A. Knopf, 1976) p. 48.

3.       Morris Abram, The Day is short: An Autobiography (New York: Harcourt Brace Jovanovich, 1982) Chapter 12.

                            

“…for we do not pass each other, she passes me

As I halt beside the fence tangled in snow,

She passes me as I shall never pass her

In this life…”

                     “Transit,” from A Wild Patience Has Taken Me this Far by

                                                          Adrienne Rich

Part Three

    Willing Adjustments

Monday, April Fourth—8:30 a.m.

    I have come home to the rent-controlled tenant’s nightmare. Julio, the plasterer, woke me. The store-room will get plastered but not painted today. In the kitchen, I showed him where I wanted a hole in the ceiling fixed with an insertion of two-inch mesh to catch the leaks that won’t  be repaired. He said I’ll do it.

    Karyn’s coming this morning for brunch. She took care of getting the painting set up for me—a horrendous task.

    Dream: I am in other’s homes, strange homes. Isaaca and I nuzzle, snuggle in a secret place. Others are there too. Calls are made and sleeping arrangements set up. I am content until I “wake up” to blood in the toilet. My period after so long? No, it is from my urine and again I’m in bad trouble. Have to go back into the hospital.

   This was a dream about my Adriamycin treatments, “the Red Devil,” but this time I will be doing it as an out-patient. Is Isaaca in my dream because she was in the hospital last year? She was at risk for surgery because of her weight. She is a beautiful, space-taking, present-day Gertrude Stein!

    Yesterday was Easter Sunday. Last year, we were all out on the deck at Edith and Carl’s in Kansas, but this year it’s cold and nasty both places. I spoke to Edith, Carl and Lydia, and gave Lydia the job of kissing everyone else for me.

9:00 p.m.

I HAVE KOWN IT WOULD END THIS WAY;

I CANNOT GO ON…

I AM A COWARD AND I NEED TO BE SELFISH

I LOVE YOU ALL BUT I HAVE GOT

TO CHECK OUT OR I SHALL GO STARK RAVING MAD.

MY LIMIT HAS BEEN PASSED. IT WAS PASSED

30 DAYS AGO.

LOVE AND GOODBYE,

                                   Sonny

10:00 p.m.

I take it all back. S.

Wednesday, April Sixth—10:30 a.m.

   Roz was very beautiful last night. I wanted to crush her in my arms and hold her forever. She cooked us a lovely dinner of salmon steak and asparagus, and I also had a baked potato (and then couldn’t eat the salad). At eight dollars a pound, the salmon is a national treasure.

    I know how the writer Marie Ponsot looked at fifty, and I look much the same, except that I am not as thin. I relish the wrinkles in my forehead, and the wrinkled skin of my arms. I think Marie loves herself a lot, too.

     I see myself realistically at fifty-three in chemotherapy: my hair is fast falling (“Where did all that hair come from?” I kept asking before I realized it was my own), and I have five cycles more to get through, after which I shall look and feel like a walking zombie. Again, my life has been radically changed—as it was with each mastectomy. This time I have lost a whole month in the hospital, whereas in the past I was in and out in ten days or less.

    Joan L. called. Said she’ll visit soon. I’m so grateful to her—love her generosity. She is my blood sister now and forever. We share a partial history with our kids: Kate was the product of a marriage; Lydia, too—however brief mine was. Troubles—we shared them with each other that one night after a reading at GWA. Child pain. Joan is a sensitive being, so different form ready, rough and tumble me—but part of her is me.

    My hair is almost gone now—so thin it feels like a layer of fine sugar on a lemon pound cake. I wear the African cap with tassel that Rose London gave me. And Karyn and I had a lovely day together yesterday. After croissants for brunch, we went to see Lianna. The film was uneven but good—as if reading a fascinating book with flawed pages that distort the meanings.

     Walked back uptown and ran into Charlotte going to the bookstore next door to the Thalia movie-house.

      Karyn Xeroxed my Adriamycin research protocol for Roz and Gladys. I’m the only one who hasn’t read it through. Asked Roz for a copy. It will help to steel me for what is yet to come, and I’m annoyed that I haven’t gotten it yet.

   The painting goes on and on. It will take months to finish two more rooms and to paint the kitchen ceiling. In the meantime, the living room ceiling, after only two months is starting to peel again. And the repairs will probably never be made.

    Cannot face buying that miserable wig at Edith Imre’s: will see if Cora can meet me during her lunch hour, and if it’s no good, take Edith up on her offer and cancel the order. She said she can donate the wig to the Cancer Society, but I pity the woman who gets it. Want to go to the wig place in Scarsdale, but it’s hard to get to, and I’m just not ready. I’ll wear kerchiefs to match my outfits!

    It feels good to have the time to write in this notebook. I need to revise “Emergency Resorts” but don’t have the energy right now. Could be publishing all I want in New York City News, but the strength is not there.

     Watched the news on TV last night; nothing has changed—it is all the same terrible stuff, but it felt good to get my mind off me.

      And the College Basketball Championship the night before was terrific. In the last five seconds of the game, North Carolina won, leaving Houston in shock. I hate the exclusivity male province of organized sports—it hurts, rankles, fester and aches—but I step across the threshold of suspended disbelief as in any good mystery novel, and enjoy the privileged male game.

     Women are, in fact, deprived of the model of possibility that men have always had in sports. We have been spectators only, shut out and isolated from that world. There’s Billie Jean King in tennis and the work she’s done, but the women’s professional basketball teams that are so rarely televised, and the few, unpublicized women’s softball teams are like lollipops dangling on a string just beyond our reach.

     And we want to do it differently, anyway. Given the chance, we don’t want the economics of the game to be more important than the game itself and the health and safety of the players. We do have some representation in track and field, gymnastics, skating, tennis, golf and swimming, but it is very limited. Even horseback riding events become monopolized by males as adults, though ninety percent of all riders are girls and women!

Thursday, April Seventh—Remembering Judy Grahn

The Monday after the Sunday I Walked Arm-In-Arm with Judy Grahn

Lunchtime, I sit looking out

My office window.

Silver threads among the few remaining

Gold and reddened leaves.

Tinsel hanging from the

Sparse-leaved branches,

Ivy growing from the cracks in walls

Defining Harlem’s borders.

Scholars growing from rebellious

Teen-aged youngsters

Lovers meeting in the darkened halls.

Lunchtime        I sit looking at the

Light sky

Inside all day it could

Be night all day for all

I cannot see.

I do not know from where the

Tinsel and the ivy and the

Scholars and the lovers come.

I only recognize a miracle when

Walking arm-in-arm with one.

     Isaaca asked me to introduce Judy last night at GWA. Read my poem and said some awkward words about this woman whose work I love. She read from a manuscript—wonderful autobiographical stories about her growing-up years, and coming of age.

      I sat with Marge Barton, Blanche Wiesen Cook and Clare Coss and that was fun because Blanche’s reaction to good work is always so exuberant, so full of her special joy for life that spills over to all around her! It’s only because Marge is a close friend of Blanche and Clare’s (and lives in the same building) that I got to meet them and Judy who stays with them when she’s in New York.

    Afterward, a bunch of us went over to Blanche and Clare’s apartment to celebrate with Judy. It was my first time there, and it is a remarkably spacious home—full of delightful pieces of everything: a rocking chair; a long rectangular cocktail table in front of an old red couch that is a particular treasure; a punching bag and gloves, handy; loads of pictures and some plants; and a huge room just off the living room full of books and files and papers that must serve Blanche’s research and writing. Clare has a separate, smaller room, used now for her writing, just across from their bedroom. It is a place of comfort with a touch of elegance.

     I heard that Blanche had been up to see a doctor at Yale, but saying goodnight to her, she mentioned only her concern for my health. She’ll be OK; I feel it!

    Didn’t get much time with Judy. Not at all like that Sunday her poem was performed up at Columbia University, as part of the Holocaust Remembrance Program. It was a lovely piece, set to music, sang and played by lesbians and gay men. Judy cried, but I think we all did: I was too busy searching for Kleenex to look, but I could hear the noses blowing.

     We walked downtown for over a mile to The Balcony for dinner, and afterward, walked another half mile talking and laughing, telling short anecdotes and forming different combinations: seven across monopolizing the street: four and three, and five and two—Judy and I talked a bit in that twosome which inspired my poem….There must be thousands of Judy Grahn-inspired poems all over the country and abroad.

Saturday, April Ninth—11:00 a.m.

   

    More good days lost: the bone-marrow test was not as bad during, but has wiped me out afterward. Excruciating pain so bad I cried with each step—and it’s not gone this morning.

    Kath Kendal sent me a beautiful and funny letter. I want Karyn to see the butch/femme parts:

From Kathy’s Letter of April 2^nd [1983]

“…Second, ah. Second. Second  I am in love as I have never know love could be…This is a laughing love, sonny. Such laughter, my sides ache sometimes. Bobby Jo’s a natural humorist, a female Will Rogers with a broad Texas drawl, forty-six years old and big. A big-bodied big-faced, deep-voiced Texan. A Scorpio, intense and focused on her love, pouring her big love on me adoring and finding me hilarious. Imagine that. Imagine a woman so great-hearted as to find ME hilarious. BJ comes from a world of butches and their “mates” (she says she never liked any of the terms to describe the other). BJ was telling me the other night about “The Responsibility of the Butch.” She said, “it is the responsibility of the butch to get up in the dark night when there is a sound, and to proceed fearlessly into the dark, flipping on all the light switches and looking into all the corners. It is the responsibility of the butch to know all there is to know about automobiles, and plumbing, and broken things, and to be able to fix them without sweating or getting grease on her shirt sleeves. It is the responsibility of the butch to deal with all dead animals—whether in the yard, or on the highway, no matter how she feels about them. It is the responsibility of the butch to open all doors—house doors, restaurant doors, refrigerator doors—to open jars, and bottles, and wine jugs. To initiate love-making, to always know when her mate wants to make love and to always want it then and never want it any other time.  It is the responsibility of the butch to light all cigarettes, to drive the car, to haul the sacks of feed and the sacks of garbage.

     I said, “Is it the responsibility of her mate to be unable to open the doors, bottles, wine jugs? To be ignorant of automobiles, plumbing and broken things? So that the butch feels strong and needed?” I said, “Is it the responsibility of her mate to be weak, so the butch can reassure herself that she is strong?”

      Bobby Jo said, “Responsibility? Hell no. It just naturally happens that way.” And she laughed. And laughed. Whoever dared ask if it was the responsibility of the butch’s mate to be weak? And then BJ said, “I have never like weak numbers. It’s such a greater privilege to take care of someone who is strong, and to know she allows you to take care of her.”

     That’s how we talk. With appreciation, and with laughter, and with gentle ease.”

Thursday, April Fourteenth—9:30 a.m.

     The first night passed OK. Was terrified of starting Adriamycin again, but it went very well. Am not all together—this stuff tears you apart, but it has to be. I need to continue my life. Just six months of treatment, and there will be a payoff at the end—I feel it.

    My sister Edith is back with me for the second round of treatment. When she heard I was going to do it as an out-patient, she got on a plane and came. Thank goodness she is here and lets me lean on her.

     I am in tears because I have t go back so soon. Just seven hours free of being drugged, scared and out of it. Have to relax and let myself be taken care of, but I feel awful, physically.

    We walk through Central Park at 96^th Street. It is a beautiful day, with a sniff of springtime in the crisp air. I feel happy to be walking, knowing the price I’m paying for life, but feeling it’s worth it all to see an early robin, a skinny squirrel, the budding leaves and the green grass.

     This beautiful woman walking with me, my sister Edith, shares my pleasure and pain. I wonder at her strength and equanimity. She faces the same terror of mortality as I do. My illness must be impossible for her to bear, yet she bears it for my sake! I take her arm and hug it to my own.

     We come out of the Park at 97^th Street and Fifth Avenue, walk one block north to 98^th Street, one block over to Madison Avenue, and up to the fourth floor of 19 East 98^th Street.

      In the treatment room, Cely finds a vein and first runs in the Compazine. Then she sits there pushing in the Adriamycin slowly, to avoid spilling it into the tissue, which can be disastrous. The bright red liquid turns orange as it mingles with the saline solution, and the procedure is over in about twenty minutes. By this time, I can barely move because the Compazine has taken effect almost immediately.

      I stagger out on Edith’s arm and walk the block to Fifth Avenue in a stupor. The hard part is to get a taxi. I lean on a car fender. Edith gets one within a few minutes that feel like hours, and we are home soon, though it feels like the trip on the River Styx. What a difference from that walk across the Park in the opposite direction. Once upstairs, I undress and fall into bed and am soon asleep.

     But it is not a normal or restful sleep. Three hours later I wake up and take another dose of Compazine in suppository form. I eat and go back to sleep, hopefully for the night. In the morning I wake up feeling myself again, but also feeling the after-effects of the treatment. By the third treatment, I feel better, knowing it is the last for the month. I try to keep my stomach full to avoid the queasy feelings.

     I have been reading Simonton’s Getting Well Again and doing daily relaxations and visualization exercises with Karyn. It is very helpful. (1)

Saturday, April Sixteenth

    Thank goodness the three days are over. Now—only crisis time from the seventh through the fourteenth days to get through.

     It is pouring outside—like the west coast rains that flooded California and then hit the Gulf States and Mississippi. The rain here feels lovely—the sound of it on the two skylights brings in the outside, but without the wetness. I feel safe and comfortable in my own home, and with Edith taking care of me, I feel like a kid again.

    The good part of being a child comes back. In childhood, I usually cared for my younger sister, never the reverse, so there is a feeling of surprise each time she mothers me, nurtures me, tends me. And she has been doing this since 1974, when I had my first mastectomy.

     This treatment is horribly time-consuming and time-destructive. The only record, again, will be these pages, and it will be very hard for me to come back to them. I’d like to be writing new fiction: short stories, and even a novel. I’d like to be writing for New York City News on topics that I pick (or sometimes pick me).

    Blanche—what is happening with you? Are you OK?

    Norma—six days of waiting for a biopsy report. I feel you’ll be OK, but don’t tell me the waiting doesn’t take its toll.

     Jean—you had to stop radiation treatment for that brain tumor. Hope you can do it all—real soon—it will help keep you alive longer. I think about you often: the lovely pillow you fashioned for me; the injured little stuffed bear you sent me. The remarkable notes. I wish you could get yourself to join us in the Lesbian Illness-support Group. You need us and we need you.

      Nancy—did you get the proctoscopy done? Are you taking good care of yourself? Following up on your own health as well as healing others? I need our cool hands touching me, holding me in the special circle of your lovely body.

       Joan—are you sleeping at night? Are you much in pain? How angry I am that there seems no relief for you in naming an illness that hopefully would not be horrible or life-threatening. Let’s call it malelackificence—they are still the owners of the medical profession—they have tried to call it Inyourhead. We know better. It is partially in your head because it HURTS there as well as elsewhere.

      Karyn—you are healing yourself: slowly but surely you learn to relax and use wonderful imagery to help you, and I love sharing it because I need it, too. Your diseases will be licked within your lifetime—an answer for insulin-bound diabetics. That twenty-three years of difference in our ages, that seemed so unimportant we where together, should be an advantage for you. When I was born in 1930, even appendicitis was often fatal!

Tuesday, April Nineteenth—7:15 a.m.

      I’m so pleased to be keeping this journal despite my illness—here are such important parts of me that I blush (Hah! When have I ever blushed?) I’m envious of Virginia Woolf’s literary efforts, but not of her life. I’m jealous of Djuna Barnes’ talent, but not of her life. I admire Anais Nin’s work, but I don’t wish I were her. Her life has shaped who I am and how I write, and I could be no other person.

     Margaret Anderson’s sense of humor in The Fiery Fountains is timeless and timely still. I regret only that it took me so long to find her work. Through Shebar Windstone—a long-time member of the NYC Chapter of the Feminist Writers’ Guild—I have gotten hold of this book, a lovely first edition she found, and am enthralled by Anderson’s honesty and openness about her love for Camille Leblanc, twenty years older than herself.  Admirable, they are all admirable women to be thought of and used as models—and so am I!

     There is a blizzard raging out there today—the last snowfall of 1983! Cannot believe this weather except that it’s quite normal for New York City. We New Yorkers can never understand a blizzard in April—late April—yet we get a last, late snow almost every year.

     Look at me: the old isolated being—the run and jump into bed and pull the covers over my head person—the one who would not go outside for three days after a childhood fight with Frieda and Thalia and our rival gangs. I stayed inside the Britton Street Bronx apartment with my head glued to the radio, escaping the horrible world outside: a world in which your best friends ganged up against you—betrayed you and shamed you before your entire world!

    Look at me now: calling upon my community from every facet and direction—poets and writers, healers, others ill, ex-lovers, potential lovers, friends and potential friends, kin family and family of choice—taking all I can take, and knowing that I do, will or have given back in return so that I deserve what is being offered in support, love and caring, tending and helping me to survive: bedside visits, platelet donors, etc… I have only come a few miles from the Bronx to Manhattan in my lifetime, but a long way in my life.

Wednesday, April Twentieth—6:30 a.m.

     

    Audre called yesterday, and I was very excited and pleased. She said she had just returned from MacDowell and Frances told her I was ill. Had a good talk, but I can’t remember a word of it, except that she was on my “team!” I plan to make that a long, lasting effort. Oh, yes! I told her how much I loved Zami—and I really want to see her, but I didn’t ask.

    The May Sarton weekend in October needs to be shaped up. Where can we get free space for forty women for the Monday morning discussion with May on Columbus Day?

     I’ll ask Marilyn Tessler. Maybe she’ll say Yes. I miss her. She’s a gifted poet struggling to change her profession from bookkeeper to social worker, and she’s not writing. It’s a good excuse for me to get in touch.

Tuesday, April Twenty-Sixth

    Edith is leaving in twenty-four hours. Edith—my sister who loves me and who has taken care of me totally these past weeks, as she did after each mastectomy. I’ve been impatient and cross. I’ve kept her from work, her husband, my child, and her own life, and feel a drop of remorse, but not much more.

      I count on her, and she is always there when I need her. There is no question that I love her and depend on her. The only question is how to manage without her, after tomorrow. I don’t know if I can. I certainly don’t want to.

Thursday, April Twenty-Eighth—7:10 p.m.

     What a beautiful day, evening, world. Am in love with love again and late spring and eighty degrees that will not last. Am is love with Central Park and its Rambles Area and Linda S.—who turns twenty-nine soon. She has a severe haircut—so short that even the earrings don’t define her sex: brown eyes, light skin, average height, and flat-chested—a dynamic looking woman. Like that picture postcard of Eleanora Duse, Linda radiates excitement and energy, unforgettable.

     She’s coming at one for Sunday brunch—bringing a picnic with her. She’s been out all of eight years. We shared stories. She has mother problems (who doesn’t?). Has many involvements and keeps adding to them. Besides being such a talented poet, Linda has that special quality of appreciation for the moment that I find so exciting. What a lovely way it will be to end my first month home.

Friday, April Twenty-Ninth—7:10 a.m.

Blue Jay screeching on my roof

     Never dreamt that such a big sound comes from the bluejay. It hopped into the barrel and kept screeching invisibly. Then, the sound stopped. Did it find a worm to eat?

      It feels so good to be writing—even if only in my journal. I want to start a story about the Lesbian Illness-Support Group, but the truth—which comes out as fiction—could still be too hurtful to people I love. There’s the rub: a writer risks the alienation of the very people who have been such an important part of her life, if she is to tell the truth as she sees it!

     I love Cynthia Ozick’s “Puttermesser” and her Golem. (2) She writes fiction so far removed from those she knows personally, that they could hardly be recognized! I love that story with a passion I can explain only by my Jewish cultural background: my early studies of Jewish literature in Yiddish, of Sholem Aleichem and Yud Lamed (I.L.) Peretz…

But the type of work I do best is based on past or present experiences.

   The truth I can write about the Lesbian Illness-Support Group is: for years now, it has been a source of strength and affirmation of my realities; it has taught me a lot; there are confidential  exchanges which I would never reveal, and yet, many of us wrote articles for Off Our Backs’ “Disabled Women’s Issue” of May, 1980, which were very public! And so many of the women from the Group gathered around me the whole month in the hospital. Oh, well, another unsolved problem, and here’s Karyn…

7:10 p.m.

    Margaret Anderson takes me through the death of Camille LeBlanc—and I weep for her—she is gone also now, but she wrote of the loss of a beloved, and it touches me into depression. We all die, but I do not want to. Margaret Anderson seemed to think that it was OK for them to have pretended. They ignored the reality of Camille’s dying of cancer, of breast cancer, and made believe, right to the end, that she would get better. To me, it is bad enough to have to die, but not to acknowledge approaching death is something I could not live with.

Wednesday, May Fourth—9:00 a.m.—Boiceville

     I am happy! Totally at peace here in the Catskill Mountains at Shirley’s house, with Karyn. Can’t believe this is the same group of mountains that holds Grossinger’s and the Concord, and all the awful billboards that despoil the Borscht Belt, where I worked as a waitress to help pay my way through college. I look out at woods down below (and hear the sound of the swollen river) and up above, I look at a mountain wearing a fresh green dress for the spring season, like a young girl preparing for her first formal party.

     I love this house, filled as it is with children’s belongings: clothes, toys, bicycles and skis, and also with Shirley and Stan’s books and clothes. It is the space itself which is  so magnificent: Shirley built it into its surroundings. A window high up frames trees instead of a close-on neighbor’s house. Wide and tall glass doors, facing west onto the mountain, open the view. The ugly and utilitarian are shut out by the well=placed windows and the lovely inside of the house: fireplace in the living room and high ceilings downstairs. Its open loft and wonderfully luxurious bathroom upstairs, flanked by a sauna, stunned me the first time I saw it. It is a fairy tale come true. Cinderella and Charming could not do better for their friends!

   I am in heaven here with Karyn! This young woman is struggling with so much, and there is so little I can do to help her, despite my crone wisdom and experience. All I can do is stand by her as she goes through it all, and I intend to do that!

    Strange, that she has been able to help me so much! She needs to learn to deal with stress which would help in the control of her juvenile diabetes and Graves’ disease of her thyroid.

     There she is in the shower, singing an occasional off-note, and spraying drops of water as if she were dousing a bunch of growing spring flowers. How I love it when she’s happy!

     Here I am, now in the living room surrounded by a treasure of books to read, and I don’t know where to start! Cannot possible get through them all in just a week. I give up, and take my journal back to the dining area.

      I am caressing this space I have—these pages maybe putting worthless words on them—but how I love filling them with the luxury of time in which to write; the luxury of loads of paper; the joy of my own fountain pen (a gift from Marjorie Ullman) which I fill from a bottle of Pelikan black ink (and I think of Marjorie each time I uses the pen); and the luxury of these beautiful surroundings and little interruptions, compared to the City.

Sheba, Karyn’s dog who lives in a house in New jersey, and who has grown fat compared to her early slim self when first I met her, is with us for the week. Sheba—with one blue and one brown eye—the wolf-dog, the guardian of our home “in the woods:” the patient and gentle part-shepherd, part-Huskie—shares our holiday. She is an integral part of our celebration.

Friday, May Sixth—8:00 a.m.

    Later this afternoon we’ll stop at Woodstock. I’ll buy another batch of postcards to send to friends I saw regularly while in the hospital—and not since! When I got home, we all needed a rest—me included. Afterward, on to the DePuy Canal house for a seven-course (price fixed) dinner.

    Reading Rena Bumbridge’s Headstrong, in which she describes two years of chemotherapy. (3) I’m hoping for a remission long before that period of time. She is an admirable woman, who maintained a very active schedule throughout her treatment time, flying all over the place to all sorts of activities. I don’t have that kind of energy, but she encourages me to do more, at least about Guild work and the Anthology. I haven’t been pushing my limits so when I read about others, at least there is motivation, and there are models to follow.

Saturday, May Seventh—12:30 p.m.

      It’s a mild, summer-like day. The temperature is a balmy seventy degrees and a lovely breeze bends the branches of the overhanging trees and their delicate, new leaves. No insect problem with the wind.

    Here is a portrait of last night’s dining adventure. We drive along the highway to a late afternoon’s view of fields and hills. A few billboards remind me that we are indeed in the Catskill Mountains, but we as pull up to the restaurant, the scene is quite bucolic and unspoiled.

    The De Puy Canal House doesn’t have a view of the Canal, but it is there across the road. The building is authentically Early American, with original wood floors that dip and slant at a rather dizzying angle. It is freezing cold in the dining room, despite a brave fire which gets a log added just before it starts to die. I put on my heavy parka, as Karyn removes her jacket—will she freeze rather than give up her chic look? (Author’s Note: I’ve since been told that I was the only one so cold—and I projected this illness symptom onto everyone else. The joke was really on me.)

    The meal itself, at $30 each, is a marathon of delight and it will take three and a half hours to complete the feast. I have wine and Karyn sips a scotch as we both nibble from light hors d’oeuvres and finish ordering: lobster soup for both of us; we shall share appetizers of carrot pasta and duck pate—delicious, delicate and divine! As I add grated cheese to my pasta, Karyn is already finishing hers. In-between courses, we walk about upstairs where smaller, private dining rooms await their special parties. The floorboards are not too steady under our feet, and we tread lightly, taking in the fireplaces and the dark, rich wood of the unset tables, as well as the lovely blue and white curtains on the small windows. Classical music is playing up here as well downstairs, and the Beethoven is a delightful background for the canvas we have stepped into. We walk through a door and are suddenly warmed: we are above the kitchen and are introduced by our waitress to the chef and owner, Paul.

    Back to our table: heavy, slate placemats, pewter knives, forks and spoons, and Early American china, accompanied by wonderful service help to keep us under the spell of this charming place. We eat our entrees very slowly, relishing every bite. Karyn has smoked shad roe and creamed spinach in a pastry shell, while I share with her some of my beef in a fried, doughnut-like nest. On both of our plates: Chinese radish which looks like huge potato chips; a Chinese zucchini-like vegetable; fresh cooked carrots on lettuce leaves and shredded lettuce with a sour cream dressing. The fish I taste is delicious. My beef is so tender that a fork easily cuts it, and there is a topping on it of fried pork sausage. I give Karyn a taste of the topping along with more beef, and I remember us in another place, at another time: Karyn saying to me, “When we break up I want us still to be friends, and to go out to dinner together, and to share our meal the way we’re doing it tonight.”

…And five years later, the tonight is now.

   We are so full that we take another walk—then have spinach salad, freshly heated bread with butter from a beautiful silver serving dish. And four kinds of cheese are offered, along with a fruit bowl. Then dessert and coffee. Karyn chooses the cheesecake, and I the chocolate mousse (not mousse—but with egg yolk, too), flavored with Madeira wine. It is fantastic, and I make a supreme effort to finish it, despite being so full by now that I think I can’t eat another morsel.

    It is eleven o’clock on a dark night by the time I get behind the wheel to drive us home. The road is narrow, and the traffic makes it hard to see. The bright lights of the rented Datsun have to be kept on manually, but the driving is easier once we reach Route 28. Karyn prefers to drive, and she is nervous for a while, but finally relaxes.

    At midnight, we are walking Sheba on the dark road, as much for our own comfort as for hers. We both shall have no trouble sleeping this night!

Sunday, May Eighth—Mother’s Day

(that commercial shit we are hooked into)

     A lovely, lovely day. Spoke to the family in Kansas, and all is well. Started to read a biography of Djuna Barnes. (4) Have not been able to begin writing a story: fiction seems to me what I am living through these days. Sometimes it seems so unreal to for going through these Adriamycin treatments and facing this recurrence of cancer, that I have no energy left for creative writing! Yet, in order for me to survive, I have to accept it. The more real it seems, the better my chances of getting through.

   We finally got to walk down by the river, but it was marshy, and we had to turn back. We did sit for a while near the hunting cabin—on a rock with that overhanging tree I remember from the time we came with Lydia and her girlfriend. I have a wonderful photograph of the two kids with their arms about one another that is still at work, where I had it tacked on a wall. It’s not there on the wall anymore, because my office was turned into a resource room, and I have no idea where all my things were placed.

 … The time is passing too quickly: we go home tomorrow.

Thursday, May Twelfth—8:40 a.m.

Day #2 of Adria Treatments

    We ought not to keep young people from knowing about and taking part in all our ceremonies: those of death, as well as all others. My friend Sari told me that she called her almost-grown kids and took them down to Florida for her mother’s (their grandmother’s) funeral. But we tend to keep our children from death “until they can handle it.” Wouldn’t they be able to “handle” it better if we started them earlier? Lydia came here when I was in the hospital, and she did well. If it had not been her vacation time, we would not have allowed the trip. Well, for this kid who played hooky for a couple of years, it is vital to deal with my cancer since she was six. And a lot of others things, too.

   Ah! Cancer! Why am I stage IV? What are Stages II and III? I should read up on it—but my time seems so limited now. I’ll ask Cely tomorrow—before I get the number three treatment for the month.

Tuesday, may Seventeenth—7:00 a.m.

     When I choose not to write in this journal, I don’t mind. There are days I need to skip, but when, willy-nilly, I cannot move from the couch, go shopping, do not have the energy to take a shower or prepare a meal, I resent being ill with a passion that can be destructive, and I have to calm down and tell myself, “Take it easy, Sonny, you’re going to lick this illness (as Batya says), but it’s not easy! And you have been (are) very sick.”

   Forgot to ask about Stages II, III, IV etc., before my last treatment on Friday, what with needing another bone-marrow test. Jones wanted to give it to me along with the last Adria, and I nearly hit the ceiling. He knows what a rough time I have. I wanted to wait for two weeks until I feel better, but he said he needs it immediately, so Roz is coming over, and off we go again today, for the ordeal.

    Again, I am comforted by the act of writing in this precious treasure chest of my present, back to past, and then ahead to the future.

Wednesday, May Eighteenth—9:00 a.m.

     Mom and Dad are taking over the apartment and getting into their usual trouble! When we came in from the bone-marrow test, Mom was mopping up a flood in the bathroom. She didn’t know how to jiggle the rubber bulb inside the tank to stop the trickle that wound up a huge flood. Augie came and claimed to have fixed it, but the toilet is still very much broken.

   I’m skirting issues…

   The bone marrow test was agonizing and the most painful experience ever! I could do nothing but cry, and eventually scream and cry as Jones had to go into twice—he couldn’t get the tissue the first time. Roz was wonderful—but helpless as I was with this total loss of control. Even when it was over, another being inhabiting my body kept giving off these great racking sobs and screams. The pain, the trauma, the violation felt total.

    “Am I really so unusual in my reaction?” I asked Cely when it was about over, and she brought me the only available pain killer, a Percocet tablet.

     “Yes,” she said, “most people don’t seem to experience the amount of pain you do.” But I cannot believe I am so uniquely unfortunate!

      I was very careful this time, and took two Percocets as soon as the bathroom emergency was tended. Kept taking them, and I feel a lot better this morning. Roz has gone to work.

      I’m trying to talk Mom and Dad into coming with me to Toi Derricottes’ book party and reading tonight at Womanbooks; I think I can make it! Mom is hesitant, and she says Sam wouldn’t come, so I urge her to come with me, anyway.

Thursday, May Nineteenth

      Mom did come with me last night (and I was really pleased that I could walk the few blocks without pain), and she had a blast!

      She was very impressed by Karyn’s bookstore (Womanbooks). She was really impressed by all of it; the varied crowd: an interracial, intergenerational gathering of men, women, and children; Karyn’s Mom (Karyn’s Dad sat out in the car and didn’t come in. I said, “What a pity Sam didn’t come. He could have kept Al company.”); the topic of childbirth; the reciting from memory of parts of the book by the astonishing Toi; and the cake which was in the form of a huge, chocolate-covered “open book.” Nancy Bereano is doing a wonderful job with the Feminist Series of The Crossing Press, and I hope Natural Birth sells out! (5)     

Friday, May Twentieth—4:00 p.m.

     A half hour before I had to call Jones for the bone-marrow test results the bell rang, and a male voice said, “did you call for an ambulance?”

      “No, I didn’t,” I answered very confused.

       I soon discovered it was for Blanche, my next door neighbor, who is suffering from congestive heart failure (the condition that can also be caused by too much Adriamycin). Her husband, Hi Willinger, asked me in to speak to Blanche. Hi is a retired doctor, and his son, Doctor Sam—Lydia’s baby sitter thirteen years ago—was there too! I asked Sam how she was and he shook his head from side to side.

      Even at that moment she was herself—a negative, bitter woman who had no room for friendship when I needed a good neighbor.

      Well, she was off—kicking and screaming all the way.

       “I’m not going! Sonny, what are they trying to do to me? They’re going to kill me and hurt me first, that’s all they do!”

       “Mom,” her son Sam says “they’re trying to save your life.”

       Hi said to me, “I’m glad you two made up,” meaning Blanche and me.

        “I’ll come and see you in the hospital, Blanche,” I said.

        “No, you can’t—they won’t let you.”

(Author’s Note: And they didn’t. blanche had refused hospitalization for too long, despite two members of the medical profession {or perhaps because of the two} in her family. She remained in intensive care until her death in July 1983.)

         The good news from Jones is that I now have more than 60 percent normal cells in my bone marrow, up from the three percent when I first started the program.

Tuesday, May Twenty-Fourth—8:50 a.m.

     Joan L. started on my diary—she says it’s publishable. Got four pages done. I need to continue the work—but don’t have the energy right now. Stomatitis is very bad and my tongue is swollen and ulcerated way in the back of my mouth.

Friday, May Twenty-Seventh—6:00 p.m.

A cold and nasty day

   Karyn I met with Meredith Jordan, who is devoting her life to healing women. I did drawings of me, my illness and my treatment, and then one of my heart. My ticker—had not realized the connection when I drew my heart as a clock!

     Meredith is right on! My picture of me, as a house was sound, but my Adria treatment is not seen as a friend. I draw it as a bomb! Have to work on making it a friend—but it’s a damn hard.

      Karyn sees herself as a powerful machine—a motorcycle. Her illness is a leak in the gas tank, and her treatment is a pump that puts gas into the fueling tank of the cycle. She leaves a trail of leaking gasoline as she pulls into the gas station.

       After our session with Meredith (and I’m so glad Karyn found her for us right here in the neighborhood), we went to the West Side Storey Restaurant and read, ate, and talked up a storm. Now, I’m tired and sleepy and will nap for a while.

Tuesday, May Thirty-First—9:00 a.m.

Kingston, New York with Roz, Marlene and Connie

        Attended my first antiques show, Saturday at the Duchess County fairgrounds in Rhinebeck, New York. It rained; the tent dipped at each entrance and exit with the weight of the water—but sunshine outside would have made me resent being indoors.

       The feeling was of being carried back into the lives of people now gone—an intrusion of privacy too expensive for me to afford. Why should so many of these things cost so much when they are only yesterday’s junk?

      There was a painting I liked, for $4,200. There were some old ads I would have liked to buy—but I don’t have the space for them in my apartment, even for a ‘reasonable’ $ 25 to $35 each. There were some pieces of gold jewelry: old watch fobs, bracelets and necklaces that were lovely but far beyond my means. I felt intimidated and bought nothing. But I would go again, given the chance.

       An early fish dinner at the Foster Coachhouse and Restaurant was the best meal we had. The motel rooms near Kingston were comfortable, and I drove Marlene Feingold’s car often. (We went to the same camp, Kinderland, and to the same high school.) had a great time playing Scrabble—instant rapport! Connie Kapelov, her companion, I’d met several times before at functions related to working women.

Thursday, June second—12:30 p.m.

     Am very upset that the least strain exhausts me. Just “gardened” a little on the roof, placing some thrown-out junk that I consider treasures left on the sidewalk: a tin tub with wooden handles, two glass ashtrays, a big colander and a couple of well-worn wooden spoons. Replanted the ivy from inside to under the rosebush and carried a small pot of marigolds outside. I got so dizzy I barely made it back inside. I guess I need a lot of rest—will just have to take it!

     Poem from Edith came special delivery for my party tomorrow night. She’s real upset that she’s been here for trouble and not able to come for rejoicing, and so am I. It’s like all the negative attention Lydia kept getting when she acted up, and no time for me to give her a lot of positive attention for things well done! But the poem is lovely, and we’ll read it at Janet’s house.

June 3^rd, 1983

Because I cannot be with you…

For this coming together

I send you lollipops and M&Ms,

 I send party hats and balloons

And Noisemakers, confetti,

Poppers with golden rings inside,

Ice-cream sundaes,

Clowns and a magician

And all the child-like treasures

You should have on such a day.

For this special occasion,

I send you daisies and red roses,

I send caviar and escargots

And wheels of cheese,

Pate de foie gras

The finest wines,

Filet mignon and asparagus

And all the grown-up pleasures

You deserve on such a day.

I send a sky lit up with fireworks

And magnums of champagne

For this celebration

Of an event more magnificent

Than even Brooklyn Bridge’s

(I Know that many people died

Building that connective span.)

The women gathered here tonight

Joined hands to save a life.

Because I cannot be with you

For this coming together,

This special occasion,

I’ve had to find another way

To share in the celebration.

To all my sister’s sisters

Surrounding her tonight,

I simply send

Love,

EDITH

  I remember that as a child I always got a lot of positive attention: my mother listened to me when I brought home tests marked “100%,” and my father gave lots and lots of praise. But, I also enjoyed being sick, once the fever and discomforts were past: I would entertain myself with all sorts of collections—scrapbooks cut from magazines, paper dolls, stamps of different animals, and ice cream lid cards of famous actors and actresses. I eagerly awaited my father’s return from work, even more than I usually did, for along with the New York Post comics would come Charms five flavor lollipops—cherry, grape, lemon, orange, and lime—and comic books. After a week of this, I would start to get restless: soon it would be time to return to school. My mother’s chicken soup would, once again, be reserved for Friday and Saturday nights only, and as soon as I caught up with my assignments, things would be back to normal.

Saturday, June Fourth—About the Party Last Night [1983]

   The unpredictable Janet gave me a party, and we invited all the women who have been involved: all my supporters for this first half of my treatment program. We pared for the original list of one hundred down to fifty, inviting everyone from Mom, Tante Tillie (just past her eightieth birthday), Gladys, Roz and Karyn (who couldn’t come because of the American Bookseller’s Association Conference in Texas), to all the platelet donors and their lovers. Joan and Deb made it, and also Isaaca and her new lover, Elaine, Marge, Anne, Charlotte, Marjorie, Tracy, and Linda G. (separated now from Anne, so I write their names singly). And a host of others.

    Janet cooked a huge turkey and a gigantic ham—carved by Batya and Norma—and everyone else brought the rest: beautiful salads, rice dishes, breads, sweet potatoes, quiches and desserts. We had enough food to feed that second group of fifty—but we couldn’t fit another person into the apartment!

    It was a wonderful blend of women who have touched my life in different ways! My elderly Mother and aunt exchanging concentrated talk with young women in their twenties. Poets, writers, lab workers, social workers, secretaries, teachers, unemployed women, artists, clerks, retired women and dedicated but low-paid women working for women’s organizations here in NYC—and one disabled, non-working, cancer-stricken dyke—all sharing an evening.

     We had a room for outer garments and umbrellas; a room for dancing and charades; a room for smokers; and a living room to eat in. We had a huge kitchen where all the food was elegantly laid out, and a long hallway for the wine and beer, and non-alcoholic drinks.

    It was a wonderful party! The only problem I had was this terrible shooting pain from my hip down the whole right leg. But I ignored it—I’ll deal with it soon enough. This night was for celebration—and that’s what we did!

    At one point we all gathered in the living room and Isaaca, well-known for reading the mail in her inimitable manner at GWA, read “the mail”—Edith’s poem. Then Mom made a speech (in tears) and someone cracked, “Cry and the whole world cries with you,” and someone else continued, “Laugh and you laugh alone!” That broke the tension, and on we went until midnight—Janet exhausted and exhorting everyone to “take food, take food—what am I going to do with all this?”

     Janet looked wonderful. This is the first party she’s given (and she was used to entertaining frequently) since her father’s death, over a year ago, was followed one month later by the sudden death of her husband.

     Our friendship has its ups and downs, attractions and distractions, but there is a basic rapport that goes deep into a shared early history and loves: P-Town and Art, the Village many years ago—then, mothering and tending others, and aging and mastectomy—and unforgettable visit to the Museum of modern Art’s Picasso Retrospective, and so much more.

     I hated leaving. I wanted the party to go on all night. Wanted to enjoy the suspension of my rough reality a little longer, knowing how this event marks a special victory! This gathering of the women in my life, despite the absence of Karyn, Lydia and Edith, seemed like a miracle.

    I’m in a fit I am a fighter, and this about having to start treatment again next week! Rena Bumbridge, in Headstrong, calls it “The Chemo Blues.” Am discouraged and depressed over the remembered statistics: 20 to 30 percent chance of total remission with the Adriamycin.”

    Why, then am I doing it? I guess because the standard treatment percentages are not any better, and I might as well try something new: though I’ve never been a gambler, I am a fighter, and this is quite a challenge. How long can I stay alive? As given by the statistics, two to four years, and I don’t accept that!

     Terrible pain from my right hip down my leg. It feels as if it’s from the bone marrow test.

      I may have to stay on chemo the rest of my life, but Morris Abrams was on for five years until he got his remission, so—if I have to—I’ll do the same. It’s just that I hate it so much.

 

Thursday, June Sixteenth—Day #2 of Adria

Mount Sinai Hospital

     I can barely write after a long silence caused by shingles pain. I have shingles in my right hip and leg! It’s very hard to get my thoughts together. Am taking treatment in-hospital this time for my fourth round with Adriamycin.

     They put me in a horrendous room in the Guggenheim Pavilion. There is no space, no light except the overhead, the air conditioner is on top of me, no bathroom. There is a terrible odor from the poor old dying woman in the next bed. It is a single room being used for two, and I feel as if the hospital is treating me as an animal. I’m trying to have the room changed.

      Am doped up this morning. Treatment was started late after the PA Doug tried twice and couldn’t get a vein. We waited for the IV team and they gave me a heparin lock. After that, it was eleven at night before I got treatment. Roz stayed with me all the way—I love her.

     The lights went on every two hours as nurses attended the dying woman in the next bed, who was and is moaning and talking aloud. And I made seven trips to the bathroom down the hall and back, but I had the help of my private duty night nurse, Claudette Bentley.

     The staff promised to change my room. (Publisher’s Note: There are oncology (cancer) units where all rooms for the terminally ill are private with baths and where chemotherapy patients are separated. One example is Providence Hospital in Oakland, California where, during the planning stage for their new hospital building (completed 1979), the oncology unit nurses requested such an arrangement. Their request was granted and gives immeasurable benefit to patients, loved ones and staff by making the goals of qualitative and compassionate nursing care attainable. Similarly, freedom from pain is an achievable goal when the attending physician knows the latest techniques in pain-control and is an empathetic person.)

     Am feeling the two Percocets for the shingles and the Compazine for the Adria. New treatment for shingles scheduled for ten in the morning. Hope it works, because the Percocets don’t.

   Nurse here to draw blood, so I have to stop writing.

Friday, June Seventeenth—10:30 a.m.—Mount Sinai

      Feel better this morning. I’m not as dopey as yesterday, but it’s hard to write in bed. The pain in my back and right leg still very intense. The treatment last night was a mess—a new IV was needed, and they gave me another heparin lock. I don’t know why they didn’t just tick me three times and leave me free the rest of the time!

      Was upset at getting the Compazine first—was knocked out one and half hours ahead of the Adria injections. Janet left early, before the Adria, but Claudette was there, and I felt comfortable with her.

    They did change my room. It has its own bathroom—just three steps from my bed, and I was up only two or three times during the night. The double room is crowded—air conditioner still on top of me and little space for each of the two patients—but such an improvement over the last room!

    I’m restless, cannot “find a place for myself.” Can’t sleep or get comfortable an am in constant, but compared to yesterday, it’s an improvement.

After a week unable to write

Thursday, June Twenty-Third—9:25 a.m.

    At work, folks are winding up the school year, and each day gets more frantic as the deadlines for clerical work come and go. My principal Dave called me for the first time, and as usual I listened to his problems. He said he might take a job down at the Board, now that Alvarado is the Chancellor. (I can’t believe that Tony got the big one! Except for fiscal irresponsibility and the failure to help us with our problem of how to work successfully with kids who have failed year after year, our District Superintendent was probably the best compromise choice for Chancellor.)

    I’ve been trying to adjust the new medication, Tegretol, for shingles pain, and I was spaced out for days—couldn’t walk or move and the pain has intermittently been unbearable.

 …And problems with the relationship Roz and I are trying to carve out keep cropping up.

    Got a beautiful postcard of Judy Grahn from Joan L., who is teaching a workshop at Cummington Writers’ Colony.

After eleven says of silence physically caused

Sunday, July Third—5:45 a.m.

Mount Sinai Hospital, KCC 6 North

   The sun is rising. I walked to the back room and an eastern view, and saw pale light behind the Triborough Bridge, and the promise, I hear, of another hot day.

    I go home today, after a week on IV saline, vitamins and antibiotics. A week of no food or drink—even a drop of water turned into a zeppole! (Italian sweet-bread dough deep fried and sprinkled with powdered sugar). Told Jones that I felt as if I had gone and stuffed myself at all the ethnic festivals this week, without ever leaving my hospital bed. He said he knew exactly what I was talking about: he had eaten at an obscure Thai restaurant and was not back to normal!

    Then---miracle. My IV fell out yesterday morning, and they decided not to restart. And I could eat and drink almost normally and set about proving the point. I ate like a pig all day and all night—starting slowly with tentative spoonfuls of hot farina for breakfast, and working up to shrimp salad sandwiches with Karyn by late evening. Saved three desserts and chose the rice pudding Karyn had brought me, over the cherry tart and pound cake. Had Entenmann’s apple pie and ice cream at lunchtime, so tow sweets in one day will help to put back those seven pounds I’ve lost—and very quickly!

     After a long silence—too ill, too weak to pick up a pen—going alone to the emergency room Sunday, June 26^th because everyone was either out of town or at the Gay Pride March—so sick—so sick! I am finally better. Won’t stay well if I keep pigging out.

    My white count went very low this time—down to 600, half that of the month before (normal is about 7500)—so I was ripe for infection. Was given huge sulfa pills to try to prevent illness, and along with the pills for shingles, I just couldn’t manage any more. Linda S. was with me on Saturday while I could take liquids—but by Sunday I was fevered and unable to swallow food or liquids.

   Felt deserted and abandoned, but the calls started to come in even in the Emergency Room.

    Mom is sticking with me now. Has come three times from Co-op City way in the Bronx, and will take me home today.

     Letters from so many folks to answer, and Acacia wants my book!! With some hard work and Joan L.’s support, I will do it.

After another week of silence physically caused

Saturday, July Ninth—9:00 a.m.

    Bad doctor’s visit yesterday. After waiting for hours, I got to see Jones for two minutes in the waiting room. I don’t know anything new and won’t get heart function test results until Monday. But finally, I got to talk to Cely about that Stage IV business. I said, “How come I’m stage IV cancer when I don’t even know I’d gone through Stages I, II, and III?”

     She laughed, then answered, “Stage I was your original breast cancer, unless you had lymph node involvement.”

      “I did. Two nodes removed had evidence of malignancy.”

      “Then you had stage II cancer, not Stage I. Stage III refers to a large-sized tumor and doesn’t consider lymph nodes. And stage IV us a spread of the original cancer to another part of the body.”

      “What comes after Stage IV?” I asked.

      “That’s it. There is no more!”

      “There is no more?” I repeated. “But there’s got to be more!”

     She shook her head with that smile frozen on her mouth.

     So I created Stage V—living with it all!

Notes

1.       Carl and Stephanie Simonton and James L. Creighton, Getting Well Again (New York: Bantam Books, 1981).

2.        Cynthia Ozick, Levitation—Five Fictions (New York: E. P. Dutton & Co., 1983).

3.       Rena Blumberg, Headstrong (New York: Crown Co., 1982).

4.       Andrew Field, Djuna Barnes (New York: G. Putnam & Sons, 1983).

5.       Toi Derricotte, Natural Birth (Trumansburg, New York: Crossing Press Feminist Series, ed. Nancy Bereano, 1983).

Afterword

   The results of the heart function test were not good. After four treatments I was on borderline normal, and the Adriamycin had to be discontinued. My first painless bone-marrow test (we used IV Valium at a high dosage) followed, and Gladys, Karyn and I met with Jones to get the results on Tuesday, July 19^th. He said there was ten percent to go, and we would achieve remission! He outlined a new treatment schedule: a combination of chemicals for one month on and one month off. It included steroids. I would puff up and then “come down” again. I would lose my new spouting hair.

    My family rejoiced. After all, I had started with three percent of my bone-marrow cells functioning normally, and now we would get total remission, despite the original twenty to thirty percent odds. I despaired. I did not like the newly-prescribed treatment. It didn’t feel or sound right to me. Jones said he would start with the IV weekly injection on Friday, this same week.

    I spent most of the next two days crying uncontrollably, even after a supportive session with Rosemary. Finally I called Jones on Thursday, determined to make him understand me, and that I didn’t want to start it!

    “Oh,” he said. “I was going to tell you tomorrow, but since you’ve called me in such discomfort I guess I’ll tell you right now! After I met with you on Tuesday, I went back up to the lab and spoke with the pathologist. He said he thinks those ten percent of cells still there that look abnormal are dead cancer cells. We’ll test it out. You’re free for two months, after which we’ll take another bone-marrow test and see how we’re doing!”

    Two months off chemo? None of that new treatment that I was dreading? All I had to do now was cope with the shingles pain (presently under control); the dizzying medication; the stomach pain and possible ulcers; the annoying mouth sore that refuses to heal; the vaginal infections which take two separate medications; and the blood-clotted (thromboid) hemorrhoid that calls for three “sitz” baths a day, and which may need messy surgery if it doesn’t dissolve on its own!

   But I was in “Heaven.” Never mind Jones’ not having called me when he first heard the news about possible remission. Never mind anything! Two months is a gift and the months to follow after that will be a treasure (because I know I have the remission and that’s why I felt I could not accept the first prescribed treatment)! For as long as it lasts, and until I need chemo again (and I’ll certainly take it then—I need it to stay alive, though I know others choose different paths) this remission, won so quickly and unexpectedly, gives me the chance to do a lot.

    There’s the May Sarton Benefit for the Seven Poets Anthology, and a trip in November to my family in Kansas. There are my relationships with Edith, Lydia, Roz and Karyn, and all my wonderful friends. There is my writing and my job. And now there is the time to regain my health and my strength.    

Commentary

By Deborah Edel

   I’m glad I wasn’t asked why I was doing what I was doing. There wasn’t time for such analysis then. There was too much to do. There was just time to respond. Sonny was too ill to do the needed work for herself.

   I knew sonny through a friendship which grew out of the Lesbian-Illness Support Group. I knew her strengths, her tenacity, her needs and her prickliness. I don’t know why the others responded the way they did, but I know that in the time of her crisis six of us came together to help steer a course for Sonny through the morass and terror.

   This is the story of how a small group of women organized in response to a crisis—a sister, a cousin, two ex-lovers, a longtime friend and myself—each with different relations to Sonny and each with different histories. This is also the story of how a community rallied to give support so a woman wouldn’t have to endure the terror, the horror and the pain alone.

    I’ve always had visions of communication centers set up before national demonstrations and after natural disasters—long table, phones ringing, massive piles of papers and charts, details which had to be reported accurately and cataloged exactly, people dashing in and out—the hub of activity. This was true for us also, but for the most part it was going on in our separate spaces: in our homes, from our work, in community activities, and also from Sonny’s hospital room.

    The basic needs seemed clear. Sonny needed someone with her at the hospital, she needed someone to be there when the doctor visited, someone who could be particularly attentive to what the doctor said, she needed platelet donors—and so we organized and used the resources we had.

    I started coordinating visitors, calling lists of friends, names from Sonny’s address book representing all her activities, all her commitments to our community, calling to see if women had some free time and could face the pain and fear in themselves, their own feelings about death and illness—women responded.

    Marge who worked at home, was able to receive and make many of the telephone calls. I had an answering machine. Together, she and I blocked out the times for visitors taking into account the hospital routine, the doctors’ schedules and Sonny’s needs. Not too long for some, didn’t want to tire Sonny; big blocks of time for others, women who could offer moments of peace; short times for dear friends whose lives were so busy. Each of us on our phone with calendars. And each night, late in the evening after those hours of scheduling phone calls we would check in with each other—our last exhausted call to keep each other up to date and to plan the strategies of the next few days.

     Roz was in constant contact with Edith, Sonny’s sister in Kansas who was struggling with the possibility of her sister dying, who was taking care of sonny’s daughter. She had to know what was going on. She had to be part of decisions and planning. Roz and I would speak regularly, as she did with the others, before she called Kansas.

     Karyn and Roz, each intimate with Sonny and each offering her the most direct support. Each taking the time to study the long protocols and ponderous medical information until they made senses and could be discussed. Karyn, with the most flexible scheduling filling in all the empty spaces, doing all the vital odds and ends which needed to be taken care of and doing even those that sounded trivial but gave sonny the special moments of relief. During the first few weeks on a clipboard by Sonny’s bed we left messages to each other, reminders of appointments, problems coming up, new calls to be made.

    Nothing was simple, no step forward an easy unencumbered one. For example we were told that sonny was going to need platelets at certain points during the course of her treatment. Platelet donors had to be found. The doctors recommended having five names available. The call went out, a big sign at Womanbooks, an announcement on the WBAI women’s radio program. Women started calling in, friends and strangers all responding to the plea for help. And the specifications—the donation process involved two stages. First, a screening which took only about one hour. If everything checked out the woman would be on call. A call meant at least a few hours of time. I was one of the many who went for the screening. My blood pressure was too low. Rejected as a platelet donor, amidst the stainless steel and tubing, I gave blood, a credit towards Sonny’s account in case she needed a transfusion. The litany of rejection began: blood pressure too high, too low, overweight, underweight, on medication, had a cold too recently, low iron, poor veins, blood chemistry incompatibility, but still the women kept coming. Finally we had a core group of platelet donors who fit the requirements, whose worlds were flexible enough so that they could arrange things to come when scheduled. Two communities of women were helping Sonny survive. Those who kept vigil in the hospital room and those who gave blood in the sterile room in the basement.

     At time went on, routines set in. sonny became stronger and more able to take over her own scheduling. The crisis level we had maintained at the beginning was no longer necessary. In the late spring, there was a party to thank all the women who had responded to our call for help. It was sonny’s chance to meet the women whole lives and schedules I had gotten to know so well during those difficult months. Sonny’s mother said it all when we gathered together in the living room: “I want to thank you people, no, I mean you women, for giving me back my daughter!”

                              

                                           Deborah Edel

Manhattan, New York

January 1984

Sadly, Sonny Wainwright died on May 9, 1985, not from the breast cancer but from the treatment, as her doctor explained as one by one we said good-by to her in the Mount Sinai Hospital room we had all come to 

know so well. If my memory is right, she had to return from a visit to her family in Kansas for emergency intervention. Her funeral was a homage to her and her community, and her casket was carried by women out to her resting place, but Sonny was never a good rester. She fought so hard, so long, not only for her own life, but for the time to be more of a writer and for time to honor the feminist, lesbian and straight, community that was so vibrant in the 1970 and 80s.