In 1984, Sonny Wainwright asked me to be her literary executor. I was not sure what that meant but I knew it was an honor. Now it is time I carry out that responsibility. What will follow is the 1983-4 text of Sonny's
Sonny will tell you in her own indomitable voice who she is and how our lives connected in those heady days of lesbian-feminism, how we struggled to care for one another. A few copies of the book, originally published by Acacia Books, 1984, are available on Amazon. While I can give you the words, I cannot give you the feel, the photographs, the weight and cover of the original.
Stage V: A Journal
Through Illness
By Sonny Wainwright,
1984
The First Installment
This book is
dedicated to my sister, Edith Moskowitz Hinrichs,
with love and
gratitude for a lifetime of caring
Acknowledgments
Thanks!
--To Joan Larkin for starting it all—she typed the first few
pages for me—and she believed! And to Sue Willis—her sharp objective eye!
--To Acacia Books, Marjorie Larney and Paula Moseley, my
publishers—for responding to my short note of inquiry with: “Yes, we want the
book.”
--To Edith, my blood sister; Joan and Deb, Marge, and
Isaaca, my friends/family; Roz and Karyn, my ex-lovers/family; and Gladys, my
cousin—for their great devotion and energy.
--To my daughter Lydia—for her courage and love.
--To the women of the organizations—Feminist Writers’ Guild
and Gay Women’s Alternative, Lesbian Herstory Archives and Womanbooks—for their
support of me and of those who were closest to me during this special time.
--To Mari Alschuler for the gift of the final typed
manuscript.
Introduction
by Joan Larkin, 1984
When I first met
Sonny Wainwright in the winter of 1979 on the telephone, I had no idea of the
profound impact she would later have on my life. Pushy, I thought.
I was reacting not
so much to what she was saying—this stranger telling me that she wanted me to
read with some other poets at a Lesbian Pride Week event she was organizing—as
to how she was saying it. Her voice struck a nerve. A prejudice, rather. Her
voice reminded me of where I’d come from, the Russian Jewish peasants on my
mother’s side. Sonny sounded familiar: earthly, demanding, confident—like the
aunts I’d avoided for years, while I cultivated good-girl deportment, softness
and understatement.
I told her No, I
was too busy. Probably snottily. In those days I frequently felt irritated and
put upon. I was in denial about my periodic bouts with various addictions (I
held out against recovery until spring 1980). I was often arrogant, as a cover
for fear and low self-esteem. I told her No, and Sonny politely accepted my
refusal. Of course, my writing came first, she agreed. But perhaps I would read
for GWA next winter.
“Who the hell is
sonny Wainwright?” I asked a woman who knew everyone in the community. It
seemed she was a poet. She was a mover and organizer, actively involved with
the Feminist Writers’ Guild and Gay women’s Alternative, and working in
coalition with other groups. She was someone’s lover, someone’s good friend,
“Oh,” I said. I forgot her and went back to my unmanageable life.
I met Sonny again
sitting with some women I knew in the audience of a play by the Women’s
Experimental Theatre. She put out her hand to shake mine. I was surprised. At
first, I couldn’t take in this slight body that was producing the memorable,
dynamic voice. Sonny was short and thin, in a stylish tailored suit and short
haircut. The architecture of her face was both delicate and strong. Her gaze
was powerfully direct. She seemed genuinely pleased to meet me, and for once I
let go of the suspicion I felt in those days when I met new people.
We met that way—at a
party, a reading, an event—now and then over the next few years. We had friends
in common. We finally did read together, at Gay Women’s Alternative. Once or
twice we shared some of our experiences as mothers—love for our daughters,
maternal guilt, the pain of trying to detach. Always, Sonny was warm,
enthusiastic, gracious. I was polite but inwardly absent; friends say of me in
that pre-recovery period, “We knocked but nobody was home.”
Once more, I forgot
Sonny. I hit bottom with alcohol and was starting life again. For a time I let
go of everyone and everything from my past, as I opened myself to a twelve-step
program of support and healing. When I heard about Sonny again, in winter of
1983, I had faced my dragons. I could open my mail and answer the phone without
panicking. I was in touch with old friends. One of them called and told me that
Sonny Wainwright was in the hospital. She was dangerously sick with bone-marrow
cancer, and her friends were phoning potential blood platelet donors and
scheduling visitors.
I could not
assimilate these facts. I went to the hospital feeling numb. The nine years’
difference in age between Sonny and me
was insufficient to protect my denial: she was a peer, another one, with deadly
cancer.
With cowardly
heart—I was afraid to look my own mortality in the face—I went from the blood
donor unit to Sonny’s hospital room. For the second time in our acquaintance, I
was shocked. I saw with complete clarity that Sonny was a powerful and
beautiful woman—I had never really let myself look before. Her face was drawn
and tired from the course of experimental treatments she had agreed to subject
herself to, but there was a glow coming from this fragile, tough woman. Was is
the life force that had been there along? Or the beauty of energies focused on
a single goal: survival.
I was trying to
think of what to say, shy and terrified behind a ridiculous grin of confidence
and denial. “Tell me, “ she said, leaning forward intently. “Was it a problem
for you, coming here? So many people find hospitals difficult. I hope this
wasn’t too hard for you.” I was shocked again; Sonny was taking care of me.
During the visit
I watched her manage a complex social life, taking phone calls, meeting
visitors’ needs and introducing us to one another, while her mouth burned and
her stomach rebelled against the chemotherapy. She struggled with the hospital
bureaucracy to get her particular dietary needs met. She apologized for her
appearance. She was, it appeared, trying to connect gay and lesbian hospital
personnel. Some men and women who wanted to come out to one another had begun
signing the sheet tacked to Sonny’s wall. “We should do something for the AIDS
patients,” she said.
Slowly she walked
with me to the elevator. “We’re blood sisters now,” she told me, tightening the
sash of her robe. She looked weary and thin, but I saw her not so much as
vulnerable as honed to her essential self. “I’m so glad I’ll be getting your
platelets, Joan; maybe I’ll be able to write a poem.” I was dumbfounded. I
decided not to mention that I was suffering from writer’s block.
Subsequent visits
were like the first. I arrived tired or fearful, unsure of what to say, and
left energized, inspired. Sonny was a power of example to me. “All I want is a
good remission,” she said, “so that I can write.” Write! I found this hard to believe.
Here I was three years into recovery, still waiting for words to descend on my
page, while sonny, caught up in an exhausting, dangerous fight for her life,
was writing every day. “It’s just a journal,” she said deprecatingly. “I want
to do real writing again—stories and poems.” We argued about what real writing
was. Greedily, I asked to see the journal, and Sonny shared it with me. It was,
not surprisingly, as tough and candid as she.
“Women need this,”
I insisted. Dubious about the literary value of mere truth-telling, she agreed
to begin choosing excerpts that would tell the story of her illness and the
women’s support network that had rallied to help her.
As she edited,
Sonny continued to keep a journal of her illness and treatment, the setbacks,
the victories. She wrote even on her worst days. As the weeks went on, I
realized that I had come to depend on Sonny’s will to survive. Her faith in the
value of writing was teaching me to respect my own creativity. “You don’t have
all the time in the world,” she warned me. I was having to learn, after several
unproductive years, that the path to the smooth, edited final product is full
of blind alleys, surrenders, and sometimes painful excisions. I watched
sonny—her guts and persistence. She told me that she was learning to cultivate
the friends who validated her work; when she was better, she would treat
herself to the writers’ workshops she needed. In May, there was a party to
celebrate Sonny’s having gotten the upper hand in her battle with cancer. She
was still in treatment, still writing. In August she schlepped from Manhattan’s Upper West Side to my Brooklyn apartment
for an all-day women’s writing workshop. Ten women crowded into my tiny living
room to write—no air conditioning, sweat pouring—and did the homework of poets
and prophets: telling our stories.
I continued to be
amazed by Sonny’s energy. She had found a publisher for the journal and now
wanted to know if I would write an introduction. Despite my intimacy with her
illness and recovery, I knew almost none of the details of her past life. She
shared them with characteristic frankness and generosity.
Sonny told me
that she had been raised in the Bronx and educated in city public schools and
colleges. She began writing early, and from thirteen to fifteen she kept the
first of several diaries. At eighteen, in 1948, she came out with a classmate
and “hit the Village”—a phys. Ed. Major, a dancer, a bohemian, a leftist. Her
women friends were students, aspiring to professions. The prevailing psychology
taught that homosexuality was bad, and after a series of long, monogamous
relationships, Sonny, in her early thirties, left her friends and gay life and
went straight. Her father had died; she had been appointed Assistant Principal
of an East Harlem junior high school (a position she held for twenty years),
and was living in an East Side apartment. Not being able to tell the truth
about herself had made her stop writing, “I just had had it with feeling rotten
about myself.” The way to do that was to do what was societally acceptable. “It was either
change or die, so I died and changed.”
Sonny talks of
her decisions without bitterness. She says she enjoyed her life and grew,
underwent psychoanalysis and eight years of group therapy. She married within
six months of meeting a man in 1967. Lydia was born one year later. Sonny
supported her husband when he quit his job, and when they separated began
raising their one-year-old daughter alone. She helped form a parent
co-operative preschool. “The kids were very happy there,” she recalls; “it was
multi racial and multi religious.” She teamed up with a single parents’ group
that double dated and shared houses on Fire Island every summer. “I’ve always
had a support group,” Sonny recalls.
In the summer of
1974, Sonny underwent a mastectomy—her first. Her sister and woman friends
helped by caring for Lydia; Sonny recuperated and returned to work without
having missed a day. After the mastectomy—her first. Her sister and women friends helped by caring
for Lydia; Sonny recuperated and returned to work without having missed a day.
After the mastectomy, Sonny experienced lesbian fantasies; the cancer and
dealing with the possibility of death made her question how she was living her
life. “I wasn’t who I wanted to be.” Sonny underwent a second mastectomy two
years later in 1976. “It was,” she says, “just dropping the other shoe.” She
continued therapy, and was seeing a man as well as getting involved in a
nonsexual intense relationship with Ellen, a former student. Then Sonny gave up
both and came out. A former lover had gone to Gay Women’s Alternative; Sonny
followed and immediately found herself on the Steering Committee. She remembers
a GWA party in 1978 for which she got dressed up in a powder-blue suit. At not
quite five feet tall, she weighed 102 pounds. “I was gorgeous,” she admits. “It
was my rebirth at 48.” She met Karyn, and within three weeks she was involved,
committed. “That was a bombshell—culture shock,” Sonny says. “Karyn just blew
my mind with who she was and what she was—the bravest, most courageous,
outlandish—and I could match her point for point.” Sonny came out to her
daughter. “I was so proud.”
“Writing was
there for me again.” She became actively involved with the Feminist Writers’
Guild in June 1979, and she contributed to the Women’s Disability Issue of Off Our Backs in May 1980. It was during
this period for Sonny of blazing energy, discovery of love, and sharing of
words, that I had my first encounter with her and—in my alcoholic fog, denial
and depression (hidden under the façade of compulsive overwork)—was taken aback
by her dynamism and certainty. And it was during the period of my own recovery,
when I joined a support group for recovering women alcoholics in the arts, in
January 1983, that Sonny, six and a half years after her second mastectomy,
once again became sick.
I write this
fourteen months later. I wanted to provide a context for some of the references
in Sonny’s journal excerpts—her having joined HIP because it provided
24-hour-a-day emergency and regular care for Lydia, her having spent five years
in a lesbian illness support group which came out of a workshop with Audre
Lorde and was started with Joan Nestle and Deborah Edel of the Lesbian
Hersdtory Archives. I hadn’t expected to discover how much more fiercely than I
knew, I respect and care for Sonny, nor to acknowledge how deeply I identified
with her recovery. “Write about yourself,” Sonny suggested softly.
It was no
accident that we met; it never is, when people come into our lives. Sonny is my
teacher of faith and persistence, in the determination to survive, to recover,
and to write. To tell our secrets. And not to have do it alone. Today, all but
a few percent of the bone marrow cells are normal. A victory—and an ongoing
battle. Sonny is still in treatment, still writing. And I have a new
understanding of that voice that once appalled me with its strength. “Joan!” Sonny said to me in a recent phone conversation. “When are you going to teach
another workshop? We’ve got to have one!”
Joan Larkin
Brooklyn, New York
April 1984
“I dreamt I wore
curtains and veils,
Billows and sails,”
says Gerda, “and
Set out on a raft
upon the sea. But
the raft bucked and
bolted.”
A Weave of Women, E.M. Broner
Part One
Seeking Answers
Friday, February Fourth—5:35 p.m. [1983]
….And there is suddenly time.
Cancelled everything not urgent
all week, just as I have been letting go of organizational work since
September, supposedly to do my own writing work, but perhaps I have been
preparing myself for some kind of battle.
I just hit home and the couch
and Shogun every night on TV. I am
relaxing with Sanka and cigarettes: hoping to get rid of what’s been going down
my throat all week and not coming out the other end! Am hungry and cannot eat:
200 calories all day. Got test results Tuesday—Dr. Warren Lautman wants to see
me—low hemoglobin, etc., etc.
Don’t know why and I’ve got to find out. I’m scared, but the dizziness,
the nausea, the exhaustion are all explained now…
Sunday, February Sixth—9:40 p.m.
A full day of Guild (Feminist Writers’
Guild) work—and letter writing. Wrote so many letters I’m dizzy. Finally some
journal time to think on last night.
Elissa Malcohn is staying with me—since
last night and until tomorrow morning. Elissa Hamilton is no more, and I miss
her hearty laughter! She’s left Tom. I had to and did stop the endless
spouting; we have had a quiet, peaceful day with minimal intrusion on each
other’s privacy. Elissa went out for bagels and cream cheese and the Times and we ate through both, and she’s
writing. Instead of talking, she produced one of her fantastic poems. (1)
I’m in a very tired state: the tension of the Seven Poets for 7 Poets reading last night almost unbearable at times. I keep wondering why I do it.
For the anthology? I don’t think it will ever come out, and if it does---the
work just starts! It’s endless.
The Benefit was very slow starting. By
seven-thirty only two of the seven readers were there. I was sweating it out
with the rest: so only Joan Nestle and Jana Harris gave the first half of the
reading—but they were terrific!
I loved introducing the second half of the
program. Gloria Anzaldua shocked me by dedicating her reading to me. I think I
stood up and bowed Shogun style—Embarrassing!!
But I was absolutely shocked and thrilled. I am not at ease with her—have to
break through—have to be able to talk freely or it’s just not good. I know we
share at least the problem of validating our work as writers. It’s so
difficult. There are many differences, but I usually thrive on that.
The reading went better that I expected. By the second half seats were
filled and there was a wonderful feeling in the room. I’m so greedy. I tried to
relax and couldn’t, but it was a shared experience and I wasn’t responsible
alone. The cookies sold well; pumpkin cake was overpriced, that’s why there was
some left.
Doctors
visit tomorrow: I’m frightened of those “low” test results—wondering what else
is wrong.
Monday, February Seventh—8:00 a.m.
Didn’t go to work today, so
I’m minus another $127. Three and a half inches of snow was not enough to
closes the schools. I gambled and lost, staying up too late and not able to
gather myself for work before the doctor’s appointment. Will call and change it
to an easier time.
I don’t know if I’ll feel better after I see this crazy doctor at HIP
(Health Insurance Plan of Greater New York). Lautman rages through his
patients like a maniac: screaming at the nurse and yelling at everyone in
sight—this seems to be his normal self. He gave me nothing to help my
intestinal pain, but did request the blood tests: WHAMMY—PAYDIRT! How bad? Is
there cancer somewhere again?
Ah! I could use some laughter and
making light! Not taking myself so seriously—oh well! It is there, somewhere
–under the cover of destruction and death.
Friday, February Eleventh—6:30
My Lesbian Herstory “At Home”
Reading tonight will be a big BUST. Predicted snow storm began this
morning—with six inches due through tomorrow. It’s a dam shame—but it could
have happened last Saturday—for our Seven Poets Benefit!
Saturday, February
Twelfth—11:16 a.m.
The blizzard of ’83. I’m listening to detailed
problems of New Jersey, Westchester and New York City. Nine-foot drifts and
cars buried under the snow in Queens! Am enjoying the aftermath: airports
closed, no buses running, trains sporadic or out on some lines. Will pay for it
as soon as the ice/snow starts melting on my roof---and causes more leaks and
messes in the apartment. Couldn’t open the door for Sunshine to relieve himself—it
looked well over a foot out there. But it’s 72 degrees inside: so cozy and warm
that I’m in heaven (after no heat for twenty-four hours—and the apartment
freezing last night).
I was Nuts. Called Joan Nestle and Deb
Edel at the Archives and Deb said, “It’s on!”
So at seven I showered and bundled into layers, and it took twenty minutes
through a fantasy land of painful steps (the illness) but gorgeous snowflakes
and no fierce-blowing winds or whipping sleet in the face: it was just fine! TV
announcers were telling every one to stay home—cars were having trouble: once
the plows came down Columbus Avenue, they (the cars that is) couldn’t pass into
the side streets. It was really beautiful out, though, and I wished I’d had
company to share the loveliness.
Once there, I couldn’t believe that about
fifteen women had braved the storm. Most of my friends had called to tell me
they wouldn’t venture out, but Karyn was there and so was Linda Smukler. It was
an audience of younger women.
Joan and Deb were wonderful as usual.
(Have had so many great contacts, like the Illness- Support Group, and projects
with them as Lesbian Archives folks.) It all went very smoothly.
A difficult reading for me: I read work
about Lydia and her “banishment” to Kansas because of all our problems
together—tough mother/daughter stuff!
MOTHERING BLUES
She comes to me
with tears temper
the friends she lacks
losses multiplied as
if
by hand-held cheap
computers.
touches buttons in me
anger at
relentless taking
insatiable demands
like some men I’ve
suffered.
Spelling reading
Music dancing
All my strengths
rejected arbitrarily
This wilted child’s
garden of verses
Depressing rebellious
angry.
Blond hazel- eyed
Dimpled tall as I
Body firm and budding
Bleeding young as I
Curly-headed daughter
Of a too old mother.
Fantasies come
true she
Horseback rides and
Skates to gym
Minding
disappointments
Polishing her nails
and
Talking on the phone.
We quarrel like
siblings over
Mother love
She would engulf
Annihilate absorb
And smother me I
Fight her too
intensely
Feeling helpless
until we both
collapse
laughter and
involuntary tears
releasing us from
battle
like a sudden
armistice.
She will always call
me
Mother and
complain. I
Regret she did not
know me
In my youth.
Today my neck hurts—perhaps from sleeping on the couch.
Other symptoms: blood clots in my nose, extreme tiredness, remnants of
dizziness, continuous constipation, weakness at times during the working day
and a problem climbing the subway stairs—although racing up and down one or two
flights at work is still manageable. I’ll be OK—will see Dr. Ward
Cunningham-Rundles if anything further shows on test results.
Tuesday, February
Fifteenth—6:55 a.m.
Yesterday I called
Lautman from work for test results. He’s nuts! Could hear him yelling in the
background. The nurse who saw me through my mastectomies is also assigned to
assist Lautman. She is terrific. She found the test results and gave them to me
over the phone. I am very anemic with no diagnosis at hand. She’ll send the
report to Cunningham-Rundles, and I’ll have my consultation with him next
Monday at four. I’ll know what to do after that, because I trust him. He didn’t
get a diagnosis for Joan [Nestle], but he treats her with caring and respect, and
we are out lesbians to him. I remember the first time I went to see him for a
check-up in 1978. Karyn came with me, and he treated my young lover as if she
were a part of my immediate family, which she was, of course! Wish I could
afford to see him more often, but my health plan doesn’t cover doctors outside
of HIP.
I’m tired of being
so tired. Rosemary Walsh, my therapist, is right about impatience. It is a
dizzying downward spiral. The best I could do was to stop at Womanbooks and get
some books/magazines to read instead of those daily doses of soporific TV.
Am not able to
write (excerpt here ) and that’s hard, but it’s just not possible now. Poetry?
None—and neither can I do my short stories since I started “Target Practice”
and then had to put it into layaway. I try not to accuse myself of being a lazy
woman.
From Target Practice
Zell spent a lot of time on her bed working
or reading or watching TV. The rest of the world, and Dorothy the cat, were
excluded by a closed door, but special people were allowed entry. Zell could
not hear the downstairs buzzer from her aerie, but she knew Sheila was due for
dinner.
Meanwhile, Sheila walked the village
streets in anticipation of a pleasant evening with Zell. She stopped at the
Pottery Barn, walked on until attracted by the Unicorn shop where she picked up
a card for her horse-hungry daughter, and finally crossed Bleecker Street,
ringing Zell’s bell from the outside lobby—an elevator ride away from her
destination.
There was no returning buzz. Frustrated, she
rang again and again, starting to get worried. “What could have happened?” she
thought. Zell was reliable and punctual. This was not like her. She sat on the
lobby steps for a moment, then rang again. No response. She walked out of the
building.
“Maybe she ran out for a minute to get eggs
or chili powder,” she thought, and walked to the corner to see if Zell was
coming. No Zell. Fearing terrible things, she walked several blocks to Zell’s
friend’s apartment.
“It’s Sheila,” she yelled into the intercom.
“Can I come up for a minute?”
In the elevator, she shivered. Was she
expected? Was Zell in the hospital?
“No—I haven’t heard from her today, but
she was fine when I spoke to her yesterday. Listen, why don’t you call her from
here?” said Deena.
Sheila dialed the number, fingers shaking
and her stomach a pit expecting to be filled by disaster, until, from the other
end Zell’s voice said, in her charming telephone sound, “Hell-llo?”
“It’s Sheila. What happened? I rang and
rang and you didn’t answer!”
“I’m sorry,” Zell said, as if she had
just stepped on Sheila’s toe and jumped lightly off again, “I’m in the bedroom
with the door shut and I didn’t hear the bell. C’mon over.”
Sheila was furious! She left Deena’s and
walked back in a rage. When Zell tried to hug her as she came in the door,
Sheila pushed her away. Zell’s usual response to anger was withdrawal, so she
drew back, saying nothing and getting busy in the kitchen.
“I’m going home,” said Sheila. “Don’t do
that,” said Zell, so she stayed, but the evening was a bust for her and she
went home early. What kind of caring was it to be locked behind that door when
she expected someone she said she loved? Sheila could only judge from actions,
and she assumed Zell didn’t love her.
Saturday, February
Nineteenth—9:00 a.m.
Yesterday was my
birthday. Now I have sometimes chosen not to celebrate, but this was a really
difficult one. So sick—such a rotten day—imagine having a barium enema on my
fifty-third birthday—what a way to go! My hemoglobin count is eight (normal for
women is about thirteen), but my birthday gift was Dr. Maklansky taking me into
his office after the barium mess to tell me, “There is nothing showing of an
emergency nature. The report will be forwarded to HIP in a routine manner by
next Tuesday.”
After the test I
went to Jackson Hole and treated myself to a bacon, eggs, toast and cherry pie!
And then took laxatives to try to get rid of the barium and the food. Seems as
if it all went in and nothing is coming out. I’ll be dripping gray barium for
days.
Monday, February
Twenty-First—A Work Holiday!
On Saturday I met
Gloria as scheduled, but didn’t get to the Guild meeting first. Gloria is a
tiny woman in her forties (I think) with a face like a round clock telling the
difficult, painful years. Her unique voice with its Chicana accent uses the
bilingual speech lovingly, carefully and with respect. We went to the Hunan
Restaurant on Broadway and 97th Street and shared fresh vegetables
with tofu and stories. She is an intense woman determined to do her writing.
Taught high school: administered programs out West, and now is writing (since
the publication with Cherrie Moraga of This
Bridge Called My Back) (2) and doing workshops all over the country to pay
the rent. She’s moving to Mexico next year—says the living will be a lot
cheaper there, and she’ll be closer to her family just across the border.
I envy her the
time for her work, but she does have to earn a living. Gloria came back with me
to the apartment—very observant—noticed all and was warm and sympathetic. I’m
grateful to Kathy Kendall for trying to explain each of us to the other. I like
Gloria’s work, particularly her poetry: that poem about the relics of St Teresa
is on that made a permanent and lasting impression—a searing set of images more
powerful than anything I have read before. (3)
From Holy Relics
…The good Father drew near,
Lifted her hand as if to kiss it,
Placed a knife under her wrist
And from her rigid arm he
severed it
The father Teresa had loved stood smilingly
Hugging her hand to his body…
----Gloria Anzaldua
Saw Marilyn Hacker at
Womanbooks—big hello—she’s over her head editing my favorite feminist magazine,
13th Moon, and its poetry
series at St. Clement’s. She needs help with the tasks and I wish I could help
her or find some more women she would accept as workers, but I’m too ill now
to be able to do this.
One of my
favorite activities, which I consider a service to our community, is making
connections between women I like, who I feel would also like and be of help to
each other. It’s an application of the Golden Rule.
Marilyn is going
to Yaddo at Saratoga soon and Gloria off to MacDowell next October.
My dream! To have
a month at such a place: to write and type and dream stories into Stories. And
poems—will I ever write another? My muse has deserted me: my energy goes to
staying alive!
Tuesday, February
Twenty-second—10: a.m.
No more fooling
around. I’m not going back to work until I get a diagnosis and some treatment.
Called HIP to talk to the administrator (my old GP whose strengths do not lie
in human relations. He has been promoted, like the precept in The Peter Principle, past his level of
competence) and his secretary tried to get me back to Lautman’s care. I told
her there was something wrong with the way my case was being handled and to get
Dr. Herman Nayer onto it pronto. She said that she would look at my file and
get back to me if he had anything to say. I’m sure I won’t hear from him, so
I’m going down to the HIP Center at two
and fight: I need some specialists, immediate testing and results. And some
treatment or else!! According to Cunningham-Rundles, I should be in the
hospital right now.
No pay--I’ve
long since used up all my sick days, borrowed the limit of twenty days and
taken days without pay—but somehow I’ll manage. I’ve been sick since January 19th.
Went to Lautman on January 26th, and today—a month later—I am still
undiagnosed and untreated. It drives me wild, and I have the barest glimmer of
understanding of how Joan N feels after five years without a diagnosis. I would
be raving in a padded cell if it were I. She has survived without the
validation of NAMING her illness.
Is my illness cancer again? I’m terrified.
Can no longer bear the stress—must act—get some results! If I need
hospitalization then so be it.
Cunningham-Rundles
says I need more blood tests and a CAT (Computerized Axial Tomography) scan.
And he called me at home last night to urge me to push. Missed the last Lesbian
Illness-Support Group meeting and that has its effect. I’ve packed my hospital
clothed, and it feels as if I’m finally serious about what’s happened to my
body: exhaustion, hunger, weakness, dizziness, low-grade fever, little energy
after the morning hours.
This is not
living: better to give in and do what has to be done. Never mind the job. No Junior
High School Assistant Principal is indispensable, and East Harlem will still be
there when I come back!
Thursday, February
Twenty-Fourth—9 a.m.
Yesterday I fought and compromised with
Lautman. He’ll see me again in one week instead of two (the bastard) and I’ll
take the tests he orders. He doesn’t want Cunningham-Rundles involved.
Lautman’s soul is deceiving and changeable. You reach out to touch a stuffed
teddy bear, and each time it gives you an electric shock instead of the
expected warmth and comfort.
Joan and Deb came
over instead of my visiting them at the Archives. I was too tired to go out but
showered and washed my hair and felt better knowing they were on their way.
They brought chicken and yellow rice. They had gone to P-town (Provincetown,
MA) where Joan promptly caught the flu, but they had a good time anyway. She’s
back to work, hating it as much as I do because of the illness. Deb is joining
the Butch Group—with Karyn and others. Most are in a couple relationship—and I
wonder how that affects their perspective.
Friday, February
Twenty-Fifth—11:30 a.m.
I
review the pages of this journal and see a pattern of progressive illness
emerging. Where will it lead to?
Joan came this
morning with love and a load of books for me to read. Am full of projects
again: reading, writing, even plans to type up Target Practice. My absence from
my paying job so costly, but I refuse defeat and if I’m sick—at least I can do
some writing!
A telephone call
came about the NYC Chapter/ Feminist Writers’ Guild Political forum: so far
only two panelists have accepted. Hunter College Playhouse should be ideal because the 69th
Street Armory, where the Small Press Fair will be held, is quite close by.
Gladys called.
She’s more than just a first cousin I grew up with. She’s also a colleague and
a friend and a beautiful and bright woman whose approval I have always sought
and appreciated. She’ll come with me to face the monster Lautman at HIP on
Tuesday. I need some support, or he’ll
be signing my death certificate and disclaiming responsibility to a weeping
family.
After the liver
scan, Dr. Samuel Silverstone told me I’m clear. Now I’m frightened of bad
results on the chest x-ray coming up. Went to eat at the Gardenia Restaurant on
Madison Avenue near 68th Street after the last test. A greasy silver
spoon. Had griddle cakes and then ran for the bus uptown feeling awful. Waiting
for the crosstown at 96th Street, I almost blacked out, and again in
the drugstore, so I cancelled my therapy appointment with Rosemary but had a
phone session with her instead.
Being unable to
get myself downtown and back again for my appointment was very frightening:
Rosemary’s reassuring voice calmed me, settled me, and I felt better. Had to consider whether there were any
emotional factors involved: was I reacting to returning to the office where I
had those 24 x-ray treatments after the first mastectomy in 1974? (I would lie
there for the three minutes that felt like hours while the tears kept falling.
I knew these treatments were as worthless as I later discovered them to be. And
the technicians couldn’t understand why I didn’t think I was “being helped.’
No, there isn’t an
emotional factor here: I know my body and these near blackouts are physical,
and terrifying. Rosemary is one of the people with whom I can share my
fears—nothing held back!
I want my sister
with me, but something tells me I’ll be needing her later on. I’m so glad we
had that wonderful Christmas-time visit. Spoke to Lydia last night and asked
her to give her aunt a great big hug and kiss for me (across the miles to
Kansas) for my lovely knit birthday sweater. And my daughter and I miss each
other, but are grateful not to be locked into our devastating patterns any
longer.
Thank goodness I
joined Toughlove.
(Toughlove is a
parent support group in local areas which uses the philosophy of Phyllis and
David York. It’s for parents having difficulty with their teenage children, and
it kept me sane after Lydia left home. I wish I had heard of it sooner. I
became a core group member and even took a weekend workshop with the Yorks, but
I had to take a leave of absence which was hard for me.) (4)
Saturday, February
Twenty-Sixth—Dream
Keeping One Step Ahead
There has been a shooting on my train by gay
men. I offer to help my conservative colleague, Assistant Principle Bob
Kingsley, count the towels on board and lend a hand with the problem of the
attack. It’s because there are so many of them (gays). The door opens. I leave
and get on a subway train. I am ashamed about the shooting and the huge number
of gays climbing on board with me.
I am in a living room where a table is set
up longways—but not as it used to be. There are unaccustomed changes here and I
am uncomfortable with them—but I accept them.
We have been swimming in a bay where the
water is not very clean. A woman friend tells me that she and her child were in
another bay close by that, but that they had to come out of because of
pollution. This is a shock to me because I wouldn’t for a moment have
considered going into a filthy part of the bay.
I cannot find Lydia and there is trouble. I
see a huge cloud from fire and smoke and an advancing army. There is no time
left. We have to keep ahead of that advancing inferno. I start on by myself.
Somehow I have managed to get together the things I need and move ahead,
knowing Lydia is safe somewhere and I shall find her in the advancing ranks. We
had just run out of time!
Are the gays shooting each other down with
AIDS? I’m ill, too, now—is that the connection? Embarrassment about the illness. (We take the guilt of illness on
ourselves when we are victims, not perpetrators. It’s like women being blamed
for our rapes.) The rest of the dream has to do with the changes in my
life—Lydia and I having to separate—not living together anymore.
My Westie’s huge
collar shrank after a washing and fits him. Sunshine’s such a honey. Needs a
bath and more work, but he’s such good company for me. A good natured pet and
I’m glad I’ve got him!
Joan and Deb
went to Philly, and they dropped off another load of books. They’ve been the
rock this disintegrating piece of algae has been clinging to! So I’ve got
plenty of work to do, and reading materials to learn from. I feel as if I’m
malingering and ought to go back to my job. I can remember other times after a
bout of the flu, when I’d feel I’d stayed home too long. I have the same
feeling now. Virtually no pay check this month—but heck—it’s only money! I’ll
manage somehow.
Audre Lorde’s Zami is terrific: as real to me as life,
yet readable as a novel and I’m involved in it, because of her honesty about
her experiences as a young black woman and a LESBIAN! (5)
Her description of
Hunter High parallels my own in some ways. For me there the underlying
anti-Semitism of some of the teachers, and there was the fat prejudice. I’ll
never forget the disgusted look on the face of my speech and drama teacher,
Mrs. Popp, as she expected me to fit into an available costume for a pageant
production. I didn’t measure up because the long, buttoned dress was too tight.
And as a Jew, I was second class, placed even lower on the ladder of
acceptability because I studied Spanish instead of French: in a “B” class
instead of the “A.” Well, because Audre was Black, the guidance teacher told
her to become a dental technician!
It was a terrible
system, and damaging, yet we got a classical education. The good and the bad
were absorbed together, and for a long time I couldn’t tell the difference.
Contrast Audre:
From Zami: A New Spelling of My Name
How meager the sustenance I gained from the four years I spent in high
school; yet how important that sustenance was to my survival. Remembering that
time is like watching old pictures of myself in a prison camp picking edible
scraps out of the garbage heap, and knowing that without that garbage I might
have starved to death. The overwhelming racism of so many of the faculty,
including the ones upon whom I had my worst schoolgirl crushes. How little I
settled for in the way of human contact, compared to what I was conscious of
wanting.
It was in high school that I came to believe that I was different from
my white classmates, not because I was black, but because I was me. (6)
--Audre Lorde
Sunday, February
Twenty-Seventh—10:00 a.m.
Laundry and typing work to do.
Autobiography of
Louise Bogan put together through her own work is interesting, but doesn’t deal
with her lesbianism. (7) May Sarton must know more about that! Bogan’s
breakdowns reminiscent of those suffered by Virgina Woolf—the dichotomy
struggle? Louise is one of May’s portraits in World of Light .(8) A traumatic relationship with her mother may
have prevented Louise’s full realization of a prolonged sexual relationship
with a woman. Of course, this may be wishful thinking. But Virginia broke
through—despite the conflict between a terrible relationship with her mother
and Leonard’s (over?) protective control as her husband. She may have also been
given medication, possible the cause rather than the treatment for her mental
illness bouts. Virginia continued to love Vita Sackwille-West to her dying
day—but Vita moved on to others.
Do not like Kay
Boyle’s work. I find it depressing, distant and male orientated—despite the
female characters. I’m wrong, I’m sure, but just do not have good feelings
about it—that’s why my work will never be in The New Yorker.
In two mailings
from the Brooklyn College Women’s Center, I got four copies of everything! They
don’t check for duplicates.
Watched the
original M*A*S*H movie last night and the special two-hour ending is on
tomorrow night. It was Lydia’s favorite TV program, and after she left I
started to watch it as if it were a connection still between us!
It was terrible to lose my thirteen year old
child despite knowing I did it so we both could survive. Did this contribute to
my illness?
Tennessee Williams dead at seventy of choking on
a plastic spray bottle cap: what a waste and right here in a New York City
hotel. (Medical examiner—“good old” Eliot Gross did the autopsy!) Too scary:
reminder of Lydia, at age three and a half, choking on the sour ball Artie gave
her at Ocean Beach, fire Island. I reached into her throat and scooped it out,
all the while feeling like I would faint.
That crazy,
wonderful summer next to the firehouse. We had the damp bedroom, and my
roommate and her children never came until Labor Day. Should have moved into
the better room until she came out, but we never did. Have been too meek most
of my life—then violent: the middle ground would have been much healthier.
Monday, February
Twenty-Eighth—11:00 a.m.
Called HIP—they “suddenly” don’t give test
results over the phone. Gave me a three-fifteen appointment with another
doctor. I’ll call them and try to get the results without going in.
Couldn’t go to sleep last night for
worrying. Unable to write or type—here is all this time available for my work,
and I’m pissing it away.
Went to a party in the neighborhood at
Marilyn Tessler’s. a nice group of women, but no one there for me until Roz
came in. She looked good to me: the most
attractive woman there with her short, paprika and salt hair and her wonderful
height, despite her pronounced limp from that childhood accident in a gym. She
surprised me—is back in therapy with a woman across the street in the Levitt
House: that building is fraught with old and new dangers—Karyn and her
ex-lover, the garage where Karyn kept the convertible we both used while we
were together, Lydia’s best friend, and now Roz every Tuesday evening at 6:30.
Said she’ll call me.
I have to be careful. Just give her the
Christmas gift of soap from Edith and let it go at that. Don’t want long talks
on the phone; don’t want extended contact. Just want to make peace. None of us
should be held to old stupidities!
Impasse/a certain stubbornness
Not aging
I hold my fears too close
For change.
Wrap them around me like a robe
Dragging edges
On the ground
Wednesday, march
Second—6:40 p.m.
Everything is suddenly moving very
quickly. After eating when the tests are done, I am blacking out on the
streets: had to cab home today. The bone scan was negative, but Lautman said if
I’m not better to get into Mount Sinai Hospital tomorrow through the Emergency
room: he would have me admitted. Mount Sinai is a familiar place for me: I’ve
been there five times before and I feel secure there, though I monitor my
treatments….
I have a feeling that
all the people I care about, and those who care about me, will come through for
me as soon as they hear the news. I have a fantastic support team and I am a
very lucky woman!
Notes
1. 6 February 1983
Elissa Malcohn
“Wreck Beach”
(A nude beach by the University of British Columbia, Vancouver, Canada)
“Wreck Beach”, B.C.
Where I walk and breathe in foreign land,
Over the border, the wind on my skin
In the folds of me that never breathed before.
Wreck Beach, nude beach,
I chat with a man about sharp rocks
Under soft feet, the cushions of seaweed
Pockets of moss.
He is a pleasure, my eyes are delighted
With him, virile statue of warm livingness
Content with simple talk about the rocks,
Content to part by avenues of sea.
My husband in the shadows
Sees me turn, sees me wave, waves back,
Tries to talk me out of my nakedness
And back into my clothes.
I bend my spine and walk
Arms akimbo, legs parted, to the water,
Ocean friend, lover in blue,
Seductively warm against snow-capped mountains.
Wreck Beach, why Wreck Beach,
Why Wreck as in ruined as in torn asunder
When I elate, out of my husband’s shadow,
Out of my husband’s home, out
In the wind, over the border in a new physic land?
Wreck Beach, harbor of nuditiy,
Lapping thoughts like lapping waves,
Yellow sun on bonecolor beach
And we are all exposed here.
c. 1983, Elissa
Malcohn
2. Cherrie Moraga and Gloria Anzaldua, Editors,
“This Bridge Called my Back: Writings by Radical Women of Color (Watertown, MA:
Persephone Press, 1981)
3. Gloria
Anzaldua, “Holy Relics,” Conditions: Six
(PO Box 56, Van Brunt Station, Brooklyn, New York 11215, 1980) p. 146.
4. David and
Phyllis York, “Toughlove,” (New York: Bantam Books, 1982).
5. Audre
Lorde, “Zami: A New Spelling of My Name,” (Trumansburg, New York: Crossing
Press Feminist Series, ed. Nancy Bereano, 2nd edition, 1983).
6. ibid.
7. Louise
Bogan, “Journey Around my Room,” (New York: Penguin Books, ed. Ruth Limmer,
1981).
8. May Sarton, “World of Light,” (New York: W.W. Norton, 1976).
“What is there possibly let for us to
be afraid of, after we have dealt face to face with death and not embraced it?
Once I accept the existence of dying, as a life process, who can ever have
power over me again?”
Sonny and Karyn, in LHA, 1980s
Part Two
In the Hospital
Thursday, March Third—9:45 p.m.
Holding Area
of the Emergency Room
This is not the way to get into the hospital!
Unless you are bleeding or unconscious—forget it!
At eleven in the morning, Karyn, Marge
Barton and I started out. Lautman said to rush: he’d called an MD there to
examine me. We got here in fifteen minutes, and it took four hours of waiting
before I saw a doctor.
Gladys relieved Karyn at five-fifteen
(Marge had left at two.) At seven-thirty they brought me to this holding area
because there were no reported beds available. The resident said I needed an IV
and a blood transfusion. I said No; it would cover the symptoms.
I
didn’t believe it when I spoke to Lautman on the phone and he said that
emergency rooms were for emergencies, and if I didn’t take the blood they would send
me home. Lautman must have been frightened by the Resident insisting on what he felt was needed emergency care. I know how sick I am and I don’t
feel as if I’m dying. But if I’m not diagnosed soon, there’s a chance I could
die from whatever is causing this progressive anemia. If I accept a blood
transfusion, it will only mask the symptoms! That is, I’ll get a normal
red blood cell count, and it might
result in any test given me coming back falsely
negative. Then the whole cycle would start again, and I’d be home trying to
run around taking more tests. I’m holding out for a diagnosis without covering
up or eliminating the symptoms of whatever it is that I have.
The Lesbian Illness-Support Group was
meeting, and they called to cheer me on. Somehow—some way—I may yet get what I
need: not take transfusions until after diagnosis. Anyway, I feel very supported and very strongly that
Lautmann is OFF.
Now, after more than ten hours, they have a
room for me: they stopped insisting on the transfusions, and they will be
taking me upstairs.
10:30 p.m.
A Short Story
EMERGENCY RESORTS
I’ve been a patient at Mount Sinai Hospital five times before. Memory
serves me well: I forget the pain (mercifully we don’t remember actual pain)
and I recall the fine cuisine.
Having come down with progressive anemia, its cause undiagnosed a full
five frantic weeks, I knew I needed to get into a hospital but my HIP doctor
did not concur. Dr Strong kept repeating that time was not a factor in this
present illness. With the help of my cousin Gladys acting as my personal
patient advocate, we convinced Dr. Strong that hospitalization might be
advisable. At first he wouldn’t cooperate, unable to locate the blood tests
done the week before.
“Take another blood test,” he shouted, “It’s no big deal! Come back and
see me next Tuesday.”
“Dr. Strong,” I said weakly, “I don’t think I can wait another week.”
Just as we were about to leave, my cousin spotted the blood test results
in the waste basket.
“Here they are,” she said triumphantly, “thank goodness they don’t use
shredders in this place.”
“Right you are! That’s it. Ok. Wonder how it got thrown out,” said Dr.
Strong. “Mmmnn—this is pretty serious. I’ll guess I’ll put you on the
relatively urgent list for Roosevelt Hospital.”
“I’m not ready for that place yet,” said I. “Maybe next year when the food improves. I hear it’s
on its way up. For now, I want to go back to my old stomping grounds, Mount
Sinai.”
“You—you’re driving me C-R-A-Z-Y!” sang Dr. Strong, but he yielded
because my cousin Gladys is an extremely attractive woman who is straight and
in his age group. Also, he is still attached to Mount Sinai as a member of its
teaching staff. He called Mount Sinai admittance, telling them that mine was a
most interesting case and he might bring his students on rounds.
Yes, I was now on the relatively urgent list, which promised me a bed at mount Sinai within two
weeks, but I needed one NOW. What to do?
Gladys and I left the center and stopped to plan strategy at Mr.
Jennings’ Ice-Cream Emporium. We both felt the need for some immediate
sweetness in our lives and ordered huge ice-cream sodas with extra syrup. By
the time we left, we had a plan.
The next morning, supported by two friends who arrived before sunrise,
we called and woke Dr. Strong and told him I was in terrible shape.
“Hurry,” he said, “I’ll alert the emergency room doctor that you are on
your way.”
As he hung up, I could have sworn I heard him start to snore. Fourteen
hours later, I was wheeled into the holding area of the emergency room, where a
sympathetic nurse tried to talk me into accepting an IV and a blood transfusion
ordered by Dr. Strong.
Dr. Strong? Blood transfusion? If I agreed to that, it would screw up all the remaining tests, and I'd never get diagnosed--didn't he know that?
"Let me talk to my doctor," I demanded.
This great physician of mine made a strong case for the treatment prescribed, and gave me an ultimatum: "Emergency rooms are for emergencies," he said. "Take the treatment or go home!"
Then he hung up on me, and I realized I had won. If I needed a transfusion so badly and refused it, how could they send me home? I might die and my family would sue. The couldn't send me home. I was OK. I was in.
Several hours later, I was settled in a private room ( all that was available at that hour, but I'm a semi-private room patient--that's what my insurance will pay for), and I was made a guest at my favorite NYC hospital/ hotel. I was served a cold meal since I had not eaten much all day. It was a disappointment. The silverware was not even stainless steel; it was plastic, and the quality of food was not as good as I remembered it to have been in 1976 when I had my second mastectomy. I wasn't so sure I had come to the right place after all. With some unpleasant tests scheduled for the following morning, I was definitely getting cold feet about the whole thing.
I called St. Vincent's Hospital to find out about their food. The public relations department, on a pre-recorded tape, boasted twenty-four hour service and a new Oriental wing featuring Japanese brush paintings on the walls and served to order Chinese cuisine in all private rooms. Before I could wonder what kind of food was served in semi-private rooms, the information, still in that high-pitched male voice (I guess a lot of gay men and lesbians work there, since it's in the Village), was delivered cheerfully, " In our semi-private rooms, we are happy to provide Chinese fast-food take-out service. It's good."
They have Catholic doctors and nurses at St. Vincent's and I'm Jewish, so I decided I wouldn't transfer there. Instead I decided to get some sleep and call Lenox Hill in the morning.
Somewhere in this huge metropolis, I thought, there must be a hospital that served a civilized cuisine. I would find it.
Friday, March fourth—2:00 p.m.
Am in shock
from Lautman’s visit at one this afternoon. He talked about his ex-wife with
venom and then pointed to my writer’s diary.
“You’re just like her—a fucking women’s
libber. She was a psychiatrist who had this whole stupid approach. I don’t care
what you feel about your body; I’m the one practicing medicine. You don’t know
a fucking thing about a work-up—you refused Dr. Glass this morning, and now I
don’t have the bone-marrow test.”
(But he had promised me Dr Nathaniel Wisch.
And I had contracted for Wisch, not for any of his partners.)
“You’ll do as I say—or else we get nowhere
fast.”
“I’ll be a good girl,” I said, trying a
new tack.
“Let me explain,” I said, “I just feel
that I want the bone-marrow test last—I’m terrified of it, and I don’t want the
test if I don’t absolutely need it.”
“You’ll do as you’re told,” he said,
“and you’ll take another chest x-ray—it’s good to compare them—and I’m going to
examine your insides.”
With that, he settled me on the bed,
with Ms. Chou, mu nurse, standing by. Then he rammed his gloved hand up my vagina. Pain—so bad that I
screamed—realizing what was happening.
“You fucking bastard—you fucking
misogynist! You’re doing this on purpose to get back at me!”
“My fingers are thick,” he said.
He got back
at me all right. He paid me back in pain for every ounce of independence I
tried to maintain. In the end, it is Lautman who has the power. No one to
switch to on staff here from HIP—they are all at Roosevelt/St Luke’s. I still
need him and he knows it. My anger and frustration have nowhere to go, and the
rage keeps mounting inside of me.
What can I do? Who would believe my story?
Women are still being put into mental institutions for violent behavior while
men land in jail. I fantasize killing him—but it does not help. He raped me
with his medical degree protecting him, and I’ll carry the scars for some time.
Then I think
about the women who have chosen to surround and support me through this ordeal.
I let my thought move to the loving relationship that are sustaining me: Joan
and Deb, dark-haired Joan unable to say “no” and light-haired Deb who keeps a
calendar for both; Karyn; Marge who’s almost half the person in weight that she
was six months ago, when her health was threatened by gross overweight; Isaaca,
who reads the mail as if comes in weekly to Gay Women’s alternative and cracks
us up; Gladys, whose beautiful curls I used to pull when we both were young,
until she learned to avoid my approaches; and even my aging mother who has not
the strength she lent me eight years ago when I suffered my first mastectomy.
Even the twice-broken lover relationship with Roz—who will come back to help
me—I’m sure of it! Somehow the pressure is eased, the sobs diminish, and I
shall sleep.
Sunday, March Sixth
Yesterday at five, Lautman came by while I
was in the shower. He was in such a hurry that he tried to walk in on me—but I
literally threw him out and talked to him from behind the door. He was
concerned that I be able to get through bone-marrow test and then four hours of
the GI series. I’m concerned, too! He said my hemoglobin count was down to 7.5
(normal for women is around 13), and I’d need a transfusion as soon as the
tests are done.
In the evening, on a hunch, I called
Charlotte Balfour, who lives close by, and she came over late on a special
pass. Somehow, because she looks the part—tall and slender with short cropped
hair and rimless eyeglasses—the nurses thought she was my consulting doctor. I
didn’t argue the point—so she stayed until midnight. Had a great time chatting
with her, but she’s having some problems after eating and may need a GI series.
She looks fine—was not loving or huggy, and I miss that—but she was very, very
friendly, and said she’d come again. (I met her in a writing workshop given by
Esther (E.M.) Broner, and was immediately attracted but she was involved.)
How Do I Say thank You?
--Debbie
brought raisins, chocolate and a mystery story book.
--Gladys
brought oranges, ice cream, and Tante Tillie’s cookies.
--Karyn came
with a poster of Eudura Welty, Maureen Brady’s novel Folly on loan, and cake with almonds.
--Carole
Leudesdorf and Dianne O’Connor brought beautiful flowers.
--Joan
carried in bananas and the lesbian-oriented Orchidias.
--Anne Corey
and Linda Grishman put three lovely flowers into a vase and also gave me soap
and scent.
--Essie Elias and Leslie Bernstein brought the Life-Savers and Coke I wanted.
--Junior
high 13’s Sunshine Committee sent flowers.
--Isaaca
carried in a stupendous red tulip plant, a gift from Gay Women’s Alternative,
and Diet Coke and diet 7 Up.
--Judy
O’Neil dropped in (she comes often—works in a lab here) and brought me the
paper.
There is a
wonderful conspiracy here keeping me sane through this ordeal.
Tuesday, March Eighth—6:45 a.m.
Couldn’t write yesterday, so am reviewing
the day since I woke up early and couldn’t really sleep much.
Karyn came at seven in the morning and went
with me to X-ray in the basement. When they handed me what they called a grape
barium shake, I shook my head and asked for chocolate. The wonderful doctor
shook her head and said NO—they had no chocolate but they did have strawberry
for the children, and she’d be happy to mix one up for me. She did, and I got
through the test with flying colors (pink for the shake and green for the way
my stomach felt) and three pounds of barium!
Karyn then left for her doctor’s
appointment—she didn’t talk much about it, but the diabetes, compounded by
Graves’ disease of the thyroid, is not at present under control. She is giving
me such wonderful support, but has trouble accepting support in return. That
has to change for her. She has made her appointments here at the hospital
instead of at her doctor’s offices, so she could also be with me for my
appointments.
Karyn was back at five, and with me when
Lautman showed. He said it could be an innocuous blood disease or bone-marrow
cancer.
The pressure and tension are building, and
though we are getting very close to a diagnosis, I’m terrified. If it is the
cancer, how long do I have to live? (Horrible!)
Then I met Wisch and he took the
bone-marrow test. He described each step of the operation as he performed it:
“I’m looking for a likely
Area on the left side of
Your pelvic hipbone to go
Into. This is fine, just fine,
Down here on the lower
Back. Your being thin makes
It nice and easy. I’m going
To give you a shot of
Novocain there. Now I’m
Going to follow it with
Another, deeper shot. We’ll
Wait a few minutes for all
That to take effect.”
“Now I’m going to put a
Needle right through the
Bone and into the marrow.
You’ll feel some pressure
Now as I twist the needle
To catch some bone marrow onto
Its hook.”
(I feel a lot of pain and
A lot of pressure as he
Bears down, pushing my
Body deep into the mattress
And then twisting the needle
And pulling. I don’t know
How long this is taking, but
My eyes are wet with tears
Spilling. He finally pulls the
Needle out.)
“There now—a fine sample
And it’s over! You can
Relax now.”
It was horrendous. The knowledge and feeling
of a foreign object invading my bones was unbearable. It certainly was the
worst test I’ve ever had to undergo, despite Lautman saying, “It’s nothing.” I
never want to have to go through this again.
Karyn was there, silent and
helpless—watching.
I felt the need to talk to Ava Alterman, who
has gone through this test, but there was no answer when I called. Will try to
reach her this morning. And I want Toney Salmere for a crises counseling
session. Her work in the sisterhood of co-counselors class that I took was
wonderful. I know she went on to become a teacher, and she’s the one I want.
These two women lend me inspiration: Ava, Living with Hodgkin’s disease, and
Toney, devoting her life to the healing of women.
Wednesday, March Ninth—6:40 a.m.
I’ve been up
before dawn almost every day: will have company later—am realizing that I’ve
not been left alone from early morning to late at night—and sometimes over
night when things get tough.
How do I say “thank you” to all these
wonderful women? It’s time for that now—no matter what happens next. Thought of
an add in Womanews listing every
one’s name—but that would be hard to do. Have to think of a way to word it, so
that it would be practical. It could go into the May issue, and Karyn could get
it in, and Nancy, who worked so long with Jane Chambers before she died of that
brain tumor, could help with the wording.
Friday, March Eleventh—6:00 a.m.
It is so hard
to write the reality: I am not Audre Lorde, but I wish she could lend me some
of her courage now! I’ve been in SHOCK since Wednesday’s call to Wisch’s
office. Gladys, as impatient as I to get the results of the bone-marrow test,
made the call.
Dr. Glass responded to her call, and poor
Gladys was the one who had to give me the terrible news—repeating his words
over the phone like an automaton—except for the very pained and caring look on
her face, “It looks like breast cancer cells in the bone marrow.”
I
tried not to think, but my inner voice spoke anyway. “You’re going to die soon.
Maybe a couple of years at most, now! You don’t believe it—how can it be true,
but it’s real, it’s happening right now and it’s the truth.”
Panic…I had to fight panic and a mounting hysteria. I felt as if I were
dreaming and that soon I would wake up, and it would have been only a
nightmare, and I would have a serious but benign blood disease. I would be OK
and I wouldn’t be as good as dead—I’d have many good years ahead of me! Many!
We called Karyn and Joan and Deb, and they
were there almost instantly. Karyn stayed the night—a restless one with four
hours sleep for the both of us. She massaged me and kept me from hysterics (but
these terrible crying and raging fits come back when I’m alone—I had expected a
benign blood disease—not the return of the KILLER). Karyn is truly there for
me. She was with me when Wisch came in to explain my situation: “serious
condition but treatable with ‘medication’ for the rest of your life.”
That means chemotherapy the rest of my
forever—unlike Ava, who with Hodgkin’s, is in remission and off chemotherapy
now. I’m glad she’s in the Lesbian Illness-Support Group: so young and yet she
is a model for me! (I keep my mind off myself and on others as much as
possible.)
The doctor outlines the program: two weeks on
chemotherapy and two weeks off, or one month on and one month off. Said that
the radiologist from HIP could administer the treatment.
But Gladys got a
suggested consultation through her sister-n-law, Linda, married to my “baby”
cousin Davey. Linda is a friend of Dr. James Holland’s wife, who recommended
him. He’s very well known and an expert on chemotherapy. His Fellow (one of
many) came in to take my history while Gladys and karyn were there. At five the
Fellow said Holland would be there in half an hour.
While we were
waiting, Lydia called, and said she’d give up her horseshow to come to New York
on her school vacation. She and Edith are flying into the city from Kansas
tomorrow! I guess it’s because of the rotten diagnosis. I don’t want them
coming for bad news. I want to be able to celebrate—not face horror, horror,
horror!
Then Lautman came,
and Gladys and Karyn went out into the hallway to do battle with him—trying to
get HIP to pay for Wisch. I covered my ears and cried.
Two hours later,
while Gladys and Karyn waited with me anxiously, Holland breezed into the room.
(He’s the highly polished Chief of Neo-plastics Research here, and known all
over the country, if not the world. He
gets a lot of grant money and heads a huge department. He’s written the book on
chemotherapy, and unlike, Wisch, doesn’t earn what he could in private
practice, but he has a lot of status and power instead.) He was absolutely
charming, though is reputation as top man also includes the description from
some women’s networking, of being “very tough to work with and for.” {Author’s
Note: He did not ever charge for the consultation.}
Holland reviewed
the choices: standard treatment versus a research project with the drug
Adriamycin. (Resesarch project is a fancy phrase for experimental treatment.)
He said the reason it took so long to come from consultation with the Fellow
was that he reviewed my program eligibility, and I met all requirements.
It may be the
only choice I have. The statistics I got from Wisch for standard treatment were
terrible: 75 percent chance of responding to the chemo, and if I did, a 25
percent chance of living more than five years!! That’s standard treatment. A
life expectancy of two to four years!
This Adriamycin is
the most powerful breast cancer drug known. Results are uncertain, because
there are only thirty-one other cases in the project, which started one and a
half years ago. My chances for total remission were given as 20-30 percent—not
good—but I’m supposedly starting with 3 percent normal cells, I can’t believe
that 97 percent of my bone marrow is diseased. (Cunningham-Rundles said that an
early diagnosis would have made a big difference, and I understand that now!)
Adriamycin side
effect: hair loss, possible heart damage, a host of possible infections; mouth
sores (stomatitis); stomach sores (gastritis); esophagitis…all confusing. (I
wish they would simplify all the ‘itises.’) In all a very tough regime. Can I
survive it?
Have to quit
smoking. Have to get Cora London to cut my hair very short, if I decide to go
into this program—so I won’t miss it so much. Holland thinks I have more cancer
cells in my breast scar: I think it’s the psoriasis, and that I need a
dermatologist. They’ll do a biopsy. Dr Daniel Luger, my old surgeon, could do
that.) I may also have infected nodes in my abdomen. Holland will have me
tested but he says the “Adria” will keep it all under control and possibly
eliminate it! (Author’s Note: These incidents added to my anxiety at the
time—but the biopsy turned out to be negative, and there was no cancer found
anywhere else in my body!)
Same Day: 10 p.m.
Dying seems easy—it’s living on now that is
so hard! I want to let go—am so tired—but there is a lot of work to be done:
the Anthology of the Seven Poets, my own work, and more. And there is my family:
Lydia needs me for as long as I can stick around, and my sister Edith needs me,
and my mother, at seventy-five, is my child though she will have to tend to me
later on is this illness, and no parent should ever loses a child, no matter
the age.
My family of
choice is counting on me too—all those devoted women—I can’t let them down…I am
frightened by the pain I have to suffer, and don’t want my loved one having to
watch me go through that pain! But—the reward will be time in remission!!
No choice here: I
have to keep plugging.
Am exhausted from
visitors all day—but Toney gave me a crises session in co-counseling and it renewed my strength. I’ve loved her
ever since we took the co-counseling class together. Toney was the only one who
wore skirts all the time. I thought that was peculiar—but of course nothing
will ever get me into skirts or dresses again—now that pants are acceptable.
Anyway, after Karyn and I broke up, I let go of the sisterhood of
co-counselors.
I’ve been here for
nine days—thirty-five more to go! Am drawing inward—letting go of the outside
world—and creating a special environment here at Mount Sinai. It’s stormed all
week: been bitter cold and icy-winded, and friends have still been coming.
Inside I am warm
and comfortable and feel secure, knowing this is where I need to be. I use the
pantry at will to fix coffee and tea; I have my little refrigerator that Deb
said was so full it would feed an Amazon army—but before it could explode she
cleaned it and threw away all the squirreled stuff that had spoiled.
I feel quite
Proustian—admitting only that part of the world I want and need—shutting out
the rest. Am turning inward, preparing to do battle once again with this
monstrous disease.
I decided to
enter the experimental program (as if I had a real choice: there’s nothing else
going on the whole country) so I’ll take a tour of Klingenstein Clinical Center
and 6 North, where the program is usually administered, and I’ll meet Dr. Roy
Jones on Monday.
Marilyn H. was responsible for me call from
Bertha Harris. After she visited me, Marilyn called Bertha and her lover,
Camille clay. (Camille, after thorough research by them both, went through
treatment for breast cancer in Texas, far away from friends and supporters. But
she’s doing well now.) Bertha and Camille contacted me to talk about choices.
We’ll talk more.
Yay for
Marilyn—she came through for me.
Am too tired to
write anymore, though there’s so much I want to record that has not seen pen
and paper. Must get to bed and try to sleep or at least flake out!
