Note: This is the second installment of Sonny Wainwright's book, described by Audre Lorde in this way, "Sonny's voice is here, speaking words I am compelled to hear--an enduring story. Sometimes painful, sometimes soaring, always specific and essential. An honest, courageous and sustaining book." I know there are many typos in what I have done and I will fix them after I have entered the text. As Sonny's literary executor, I have taken this step to preserve Sonny's voice in another time. You will have to scroll down to read the text in the order it was written. So many years have passed, but as I sit typing, touching Sonny's words, it all comes back. All we tried to do, so many. Here is a history of one woman, one lesbian, one mother, one Jewish woman, one cancer traveler, one teacher, one lover, one friend, one member of the Lesbian Illness Support Group, on co-founder of the Feminist Writers Guild, one writer--and yet in the way memory and writing work, the layers build up into the history of a community.
Sunday, March Thirteenth
Couldn’t write
last night. Was too tired from a hectic day of calls and visitors, but here is
the recollection:
Deb came, at eight
in the morning, with fresh bagels and cream cheese. I had told her about the
blood clots coming down my throat, and waking with one in my mouth. I’m sure
she wanted to comfort me, and coming here despite her hectic schedule at the
Archives, is such a loving act each time.
A phone call from
a friend who cried. How could I help her when I need so badly to do my own
crying?
Rosemary came at
two-fifteen. Very good session—she stayed until four—would not take money and
said she’d be back next week.
My sister and
daughter were right on schedule. At five, a call from home on 95th
Street: “Hello—we’re here and May Sarton called! Call her collect!”
(There was a
problem with the Columbus Day weekend scheduling, but May, who has had a
mastectomy, was wonderfully caring on the phone. And she wrote A Reckoning before hser experience with
cancer! (1) I’m looking forward to her reading for the Seven Poets Anthology
Fund-Raiser, and at the same time I’m
anxious as hell to get the whole thing safely and successfully over with!)
At six-thirty,
Edith and Lydia walked in. No tears, and Lydia climbed on my bed and turned on
the TV just as Rosemary had predicted! A text-book case! Later, Joan, Deb and
Karyn came in, and the most amazing thing happened. We started talking about my
illness and our feelings about it, and suddenly Lydia got involved and off went
the TV, and out came her fears, terror for my life, and all that love for me,
and we hugged and cried. Joan and Deb hugged each other tightly, and so did
Edith and Karyn. I cried for Lydia and myself, for all that should have been there in the past and
wasn’t. I cried for what I would be missing in the future, not being able to be
with her on a daily basis. I cried from the pain of our separation, because she
was flesh and blood in my arms now, but not for long. And then I cried from the
relief of knowing that she was in good hands with Edith and couldn’t be with me
realistically through this terrible time. She needs to be taken care of, and I
can’t do that now. And she must be frightened out of her wits by what’s
happened to me, and must rather want to be 1,000 miles back in Kansas and at
her horseshow!
When others went
home, Karyn stayed over, and we talked until three in the morning—a cot for her
pulled close to my bed where I could reach down and touch her. I can’t remember
all we talked about, but part of what we said to each other was that each of us
has never stopped caring about the other, even though we couldn’t be together
for good times before this illness recurred.
I’m going to be tired today, with only four
and a half hours sleep, but it was worth it!
This morning, Batya Bauman, my tall and
solidly built peer, came at eight—woke us, and Karyn took off. Batya and I had
breakfast together—shared my bagel, cream cheese, eggs, roll and sausage while
we talked up a storm about ourselves. Wonderful! I love her, and all is OK with
her lover and herself—hope they make it!
My room looks like
a garden. Karyn’s parents sent flowers. And I got three plants and more flowers
from others.
At eleven this
morning, Gladys and Karyn caucused on some questions for the doctors. Roz
showed up at eleven forty-five, and then Edith joined them soon after. Roz was
helpful and great, but obviously having trouble dealing with my illness. We
didn’t get time together after the meeting, because Cora came in and cut off my
beautiful hair. I’ve been rather proud of the fact that there is no gray at
fifty-three. At the same time, I’ve been hoping for that wonderful, mature look
that comes only with the graying or whitening.
The haircut turned out OK after all: very butch with a little over an
inch of hair left over my head—but it looks good.
It occurred to me
some time ago that I’ve got quite a team out there doing all the work for me.
Deb is handling scheduling of visits: that’s a full-time job—I would say a
vagina-breaker. She and Joan have worked non-stop on my behalf, since I first
got sick in January! Marge has been scheduling visits (talking constantly with
Deb to coordinate it all), giving the latest bulletins and answering queries
over two her phones. Gladys is handling my medical forms and the red tape of
the NYC Board of Education. She’s been knocking herself out, since I called her
in February! Karyn has been a whirlwind of help—every thing from picking up my
mail and even watering my plants (which she hates to do), to being here every
day and often more than once or twice a day, and even to opening a joint
checking account, so that she could pay my bills for me while I’m incarcerated
here. She has turned out to be the biggest “secondary” gain” of this illness:
it’s wonderful to have her in my life again! And there are all the others who
are visiting me regularly, bringing all the small things I need. I am terrible
selfish—want EVERYONE here at my request—no at my demand, and they are all putting up with me and giving me what I
want! And no Edith and Lydia are with me, and my mother, too. I’m not battling
this illness without getting an unimaginable amount of support. If I get half
the help from my medical team, I’ll make it!
(Oranges and
grapefruits taste too acid, and I’m disappointed because Gladys brought a load
of the first Tangelos of the season and I can’t eat them.)
Monday, March Fourteenth
Do
NOT write me off yet—the obits are in for Joan Kelly and Jane Chambers and
close for others of us across the nation: a country destroying itself for money
(I think to myself that there are husbands and fathers in the Pentagon whose
wives are getting cancer and whose children are coming down with diseases
related to the polluted environment we live in. Even industrialists suffer
cancer: how can they keep selling products and putting poisons into the air and
atmosphere that kill twenty years later?) For me, life becomes the battle—and I
chose it with a passion—with a purpose beyond myself—with pride in the army
that supports me—an army of women in my community and across this nation. Not
one of us is free the shadow of the monstrous multipliers—cutting us down in
the prime of or our lives—getting so little attention or money (except when it
generates more profit) from a society which stockpiles death and is stingy on
life. I am choosing an option that may allow me to continue my life. An
experimental program that offers some hope for me now—and perhaps later—for
others.
So today I walked
outdoors, for the first time in ten days, to visit the special unit. The
weather was mild and Gladys and Edith were with me. It was wonderful to feel
the breeze on my skin and see trees in Central Park with buds on them. The forsythia
is ready to burst into bloom: a harbinger of springtime.
Karyn joined us,
and we took the tour with Monica-Caravella RN the administrator of the unit.
KCC 6 North is a special unit with specially trained staff to handle the
chemotherapy patients. It’s small and the rooms are cramped, but it looked fine
to me! It faces west, so it’s stuck behind the huge new Annenberg building,
except for a few rooms that jut out past the edge and look into Central Park.
Another unit on the east side was used in special experiments that Holland did
with isolation patients, and it’s used for chemo patients now, but we didn’t go
in there. These units are funded by an arm of the Robert wood-Johnson
Foundation, where Linda M. works as Assistant Director. (She and David have a
house in Princeton, New Jersey full of both their kids from first marriages. I
like her so much: she is a feminist in so many ways, and David has changed a
lot since he met and courted her.)
So we checked out
the facilities and found out a little more about how the Adriamycin will work.
Basically, it’s designed to kill cancer cells in a highly toxic treatment: it
also gets a lot of healthy cells along with them, but the normal cells
regenerate more quickly. They’re smarter than the confused, mutant cancer
cells. If needed, I’ll get blood transfusions and/or massive doses of
antibiotics to fight the danger of infection caused by the temporary lowering
of the body’s immune system. At the end of the first treatment cycle, I’ll go
home and continue as an outpatient through Jones’ office on 98th
Street and Madison Avenue which is just across the park from my apartment. So
ironic that the hospital is close to my school on 106th Street, but,
of course, I chose to live near where I worked for Lydia’s sake. Having Mount
Sinai so close was a lucky coincidence.
I have never had chemotherapy, and I’m
terrified. I’m also frightened by a standard treatment which keeps the hair
intact but isn’t strong enough to kill all the cancer cells that are
multiplying in the marrow of my bones.
For me, cancer is not the kind of
disease that I can live with as one lives with a chronic illness. With this
spread, the statistics are just too rotten, and I want to take the risk—for
possibly higher gains.
I’ve lived these
past eight and half years knowing the disease could recur at any time—in any
part of my body. There was nothing to be done, except that soon after the loss
of my second breast I opted for living my life differently: on MY terms! I
entered the lesbian/feminist community (after early years as a lesbian who
lived with her lovers in the middle-class lesbian closet); started writing again;
met and courted Karyn and came out to everyone, everywhere except at work. I
don’t regret any of it—I just want more of the same! And I refuse to think that
I won’t get it.
When we were done
with the tour, Karyn, in her hooded red down jacket, and I, in my brown wool
Evan Picone pantsuit, went to the women’s room. We were standing at the
washbasin when a woman came in. she looked at the two of us, and then blushed a
deep red. “Excuse me,” she said, “I must have come into the wrong bathroom.” She
turned and hightailed it out of there and we didn’t see her again. For a moment
we didn’t understand, but when we did, we howled! She thought we were two guys!
This hadn’t
happened to me since I was lovers with Karyn, but I guess it happens to Karyn a
lot, thought probably the woman speaking would be rather indignant, saying
something like, “You’ve made a mistake—you’re in the wrong bathroom, you know.
I’ll just wait outside until you leave.” Then Karyn has to say, “I’m not a man. I’m a woman.” Her lovely
voice is a woman’s voice—but I don’t know if it would help the hapless stranger!
Tuesday, March
Fifteenth—6:40 a.m
Yesterday was one
of the worst I’ve had since entering the hospital: I think I needed to deal
with despair, after allowing so much hope. Small aches and pains keep me
miserable, and I gave into them as well as the bigger life and death issue.
Last night, the
Lesbian Illness Support Group met here in my hospital room. Karyn (after all these
years of keeping a place for her, she is finally claiming it) and Nancy, our
resident healer, and Joan and Deb (somehow couples get locked together, even in
writing their names), and Linda T. I had hope Ava would make it, but she
couldn’t come. She’s been working, and her job as a lawyer saps her energy—not
too high to begin with!
I was given the
time to release a lot of anger and pain, and it was helpful. I know there’s
more to go, but after the terrible day, at least, there was a verbal outlet: I
cried and raged, and had the ears and attention of women who understand and
have known me for years.
(The Lesbian
Illness-Support Group was started five years ago by Joan and Deb after a
workshop with Audre Lorde, and I was invited to join them. The Group works well
for many reasons. First, it meets no more often than bimonthly which prevents
burnout. Second, it has supporters: temporarily-abled lesbians, whom we call
our “healthy” members as well as the ill people in the Group, and these have
often been the same women changing roles. Third, there are some very strong
characters in the group, myself included, who can and do take leadership at
alternating times. Fourth, we deal not only with personal details, but also
with issues. Fifth, we have been able
to change and grow: members have come and gone, but the Group flourishes.
Use of the word
“Lesbian” in our title has allowed us to exclude straight women from the group,
keeping us from having to deal with male/female relationships. We have limited
the group to lesbians who are suffering from an onset of illness in our adult
lives. Certainly groups are also needed to support women who share common
concerns around such areas as chronic disabilities, birth defects, and
emotional disablements, but we have learned from experience how to keep the
group intact and helpful to each of its members. This group is where I can
trust others and myself to face the pain and horrors of illness—so that I am
free the rest of the time to be productive.)
After the group
left, I couldn’t sleep. Went out into the hallway and past the nurses’ station,
stopping to talk to one of the night nurses: this night nurse who describes herself
as “nasty, all my life” is, to me, a handsome, dark-skinned dyke.
Wednesday, March
Sixteenth
Judith Horam is making me a sign: THE
RED DEVIL LIVES HERE!! She hasn’t been able to visit me, but she has taken care
of Sunshine and the plants. Has trouble coming into a hospital, as do a lot of
other people. Neither has Kate Brandt
been able to come. She is moving to San Francisco soon, but has kept
calling and sending me funny cards. And Amina Munoz is busy having her baby. So
out of the Seven Poets Anthology women, only Anne Corey and Linda Grishman have
been able to visit.
Tonight will be my
first Adriamycin treatment. Still here in Guggenheim 6, not KCC 6 North where I
want to be. I get the first dose of “The Red Devil,” which used to be called
the “The Red Death,” because it was first used on patients who were dying. They
got the Adria, and then they died, anyway. It took the doctors a while to learn
how to use the drug. Jones told me this. I was also impressed when he told me
he was related to Eudora Welty. (He had noticed the poster on my wall.) He
leans his young, beautiful body against an available wall, runs his fingers
through his bright red hair and talks lovingly, thoroughly, commandingly and
convincingly.
Saturday, March
Nineteenth—3:00 p. m.
Dream: How silly! They were bombing my house to get rid of the rats,
when all they needed to do was put out some poison!
The treatments
themselves were not too bad. I was frightened of them, and so there was a lot
of tension involved, but I haven’t vomited at all. The Compazine used to avoid
nausea is worse than the actual treatment: it spaces me out and I hate the feeling.
And they kept in an unnecessary IV the first night. Otherwise, the routine was
the same. The PA (Physician’s Assistant) came after nine and gave the
medications. I went to sleep, waking a lot to pee, but going right back to
sleep again, after a suppository of more Compazine administered by Claudette
Bentley, my private duty nurse. And in the morning, I was fine. Had company
each of the three days, and Edith was with me each night until I fell asleep.
There was quite a
flurry of activity and anxiety over the start of these treatments. The thickest
part of the storm centered over the three old folks vacationing down in
Florida. When and how should they be told about my recurrence? Who should tell
them, and who should meet them at the airport? When should they come back to
New York?
The decisions
made were based on the “protocol,” a detailed medical explanation of all the
possible things that might/might not happen to me. Edith, Gladys, Deb and Roz
all did a lot of consulting—some of it, long distance, as far away as
California. The treatment sounded as bad as the disease itself! “They” would
just about “kill” me and then bring me back to life with transfusions.
Based on this
frightening description, Edith and Gladys decided that Mom, Dad and Tante
Tillie should see me before the first
treatments started, just in case. Edith called Mom and broke the news; she and
Gladys spent a lot of time and trouble finding a limousine to pick up the
family at the airport. Both of them took the limo out to Kennedy, and everybody
then came straight to the hospital. I saw my aunt and parents at about
five-thirty Wednesday evening, and though I was very upset that they had to
come back home for me once again, I was happy to see them. For my Mom, the only
mitigating circumstances were seeing her granddaughter Lydia and her younger
daughter Edith so unexpectedly! And seeing me quite alive and looking good.
Afterward, Karyn,
Anne C. and Linda G., and Connie Signor came and stayed through the first
treatment. I’m glad Karyn wasn’t alone with me, and I know Anne and Linda spent
the night together—needing each other. Connie is a nurse, but I don’t think it
was easy for her, either….The fear of death is ever present for us all.
Monday, March
Twenty-First--11:00 a.m. [1983]
Trouble on the
front lines! They wanted me to move this morning to convert my room to a
semiprivate. It took the hospital administration—and Holland and Jones—trying
to make me feel like a bad, selfish girl (but I do not)—to get me to move to
other that KCC 6 North.
Now it’s hard to
explain what triggered my active resistance—but let me try. My stubborn streak
won out over reason (How can one person hold off an army of carpenters and “The
Administration?” I did, until my doctors were called.) I was feeling weak,
exhausted, nauseated, apprehensive about my future, stuck like a pin cushion
and depressed about not having got that KCC 6 North room before the first,
frightening series of Adriamycin treatments. Now I was being told, not only
that the special unit was still unavailable, but that I had to more out. That
meant two moves a few days apart—so difficult for me—so carelessly inflicted
for the convenience of the hospital. It was the last straw!
Feel depressed
because I could not turn it back on them! I had to yield to Holland. Jones
argued that I was keeping him from an emergency cake—NONSENSE—here it is money,
that is, the making of money, that counts.
NO NOTICE, NO
EXPLANATION:
A guy walks in and
says, “You’re moving.”
An IV appears and
no one tells you that you’re going to get a transfusion.
My doctor has a
caseload of seventy-two patients plus research work two days a week. And there
are far too few beds in the KCC unit. I don’t know when I’ll get out of there.
My symptoms now:
sore throat, dizziness, fever stated as 102.2 when the chart I looked at reads
100.2. I’m given Tylenol (no more aspirin for me—danger of internal bleeding
too great.) but was it necessary?
The PA says I might need platelet transfusion today and wants to start an IV for her conveniece just in case—I wouldn’t allow it. Time enough if I need platelets.
And Jones tells me
to “trust the team!” TRUST? Yes, I trust you most of the time; you have told me
the truth in all except this ridiculous statement. The truth for me is that I
don’t trust ANY of you!
A nurse comes into
my room who knows shit about chemo. I can tell she is scared to death by it.
She asks me all sorts of question.
PA knows nothing
about my case, and he’s ordering a transfusion! Then he tells me there’s a
death at KCC 6 North—maybe I can get that bed. I have to walk down the hall.
Thank the Goddess I wasn’t moved before the three treatment days.
Tuesday, March Twenty-Second—4:10
a.m.
From that which we can never escape—the
boundary of our bodies—comes rapt and compelling attention to a mountainous
cavern of pain from simple heartburn on the right side of my chest.
Mylanta helps,
but food hurts going down and is absorbed, it seems, into my lungs instead of
my stomach….I marvel at how I remain alive.
Holland came back
tonight, ostensibly to tell me about a TV interview he had on Channel eleven,
but actually to make peace, after I had complied with his orders to move. I
have a mixture of feelings for him—respect for his work and good results, yet
anger at his lack of sensitivity to, or even knowledge of, his privileges both
as a man and as a doctor, and fury at his words to me this morning (already
yesterday morning): “You are a narcissistic, egomaniacal neurotic.” I felt
there was quite a bit of projection there. Without a strong ego—how could I
survive this ordeal?
Roz—we
are attracted to each other again. Talked about how, despite tow break-ups in
as many years, there is still so much feeling between us. Talked about
Karyn—Roz feels we’re courting danger. But, Oh—I need Karyn now! And how
wonderful she has been during this crisis.
Jewelle visited.
She and Cheryl Clarke and Peg Bryon tried to donate platelets for me. Seems I’m
getting a big response to calls for platelet donors, so that I can have them
available without having to use the blood bank, which need medication along
with their infusion.
There go the WOMEN
again! I’d better get well fast or my closes friends are going to have to join
me here from exhaustion!
Marilyn H. came
after Jewelle. She is in a hectic period what with kitchen renovation and a
trip to Brazil on Wednesday with her young daughter Iva. Her poem Iva’s Pantoum
(3) is a favorite, and I wrote one for my daughter:
Lydia’s Imperfect
Pantoum
Mothers and daughters
play dangerous games
There is the gift I
fashioned for her
Carried for hundreds
of hand-me-down years
Through impoverished
Jewish ancestors.
I fashioned this gift
for her. There is
Love of studying,
books, reverence
of Jewish ancestry.
Impoverished,
the men gave their lives to love of learning.
Revered books and
love for studying
Are rejected for horseback riding.
Her life is not given
to love of learning.
She hates school and
leaves me diminished.
My values are rejected for horseback riding:
My child is not me.
Running in place
She hates school and
leaves me diminished.
Physical pain does
not hurt as much.
I am not my child but
I am running in place
Marking time with the
impatience of the young.
What hurts as much as
physical pain?
She is diminished by
hating school.
This impatience with
marking time. She is young
And fighting for
separations some too soon and others late.
Physical pain does
not hurt as much.
I wish she were not
Episcopalian on her father’s side.
Some separations are
sought too soon. Others late,
Carried for hundreds
of hand-me-down years.
Physical pain hurts
neither of us as much as
Mother and daughter playing dangerous games.
I sent Marilyn H.
my poem, “Dispossessed” for the Working
Class Issue of 13th Moon.
“I never give up,”
I said.
“Good,” she
replied.
…Well, if she
takes it, it won’t be because she feels sorry for me. You can be sure that
Marilyn accepts only what she considers good poetry, and good work.
Dispossessed
Neighbors crying on
the sidewalk
Their belongings
piled upon
Each other. Chairs,
tables,
Isinglass lamp and
cast iron pots.
Clothing in boxes and
Paper bags filled
with photographs
And letters. Sewing
stuffs
Spilling on to old
cardboard suitcase
Wrapped by khaki
belts.
My mother passes by
and
Stuffs the sewing back into the bag.
She shakes her head
and murmurs words
Her four year old
can’t hear across the street
Then puts her arms
around the
Crying couple disappears.
This child felt pain
blotted out
By focusing on
things.
I see a headboard
made of brass its mattress
Standing up against
an underframe of metal
Diamond-laced
companion to a fern
A maidenhead in
claypot. All as strange
Upon this sidewalk of
the Bronx
In nineteen
thirty-four as my
Nightmares of a fire
repeatedly
Consuming the
tenement we live in.
Anna Moskowitz my mother comes out
With coffee pot spilling loud words
Makes them laugh
Her Jewish curses interspersed
with
Consolation. No
shande* this
They could not pay
the rent it
Might be us there on
the sidewalk
It might be anyone
Someone would find a
place for them.
She tucked me in that
night
I listened to
Her lullaby then slipped into the
Nightmare of the
burning.
…I am smoking pot to help the “indigestion” which I found
out is a side effect of the Adriamycin treatment. Maybe I can get more sleep
now, it’s still early.
Later—A Fragment of
March 20th
Karyn slept over
and was with me for the first day of official Springtime. I wanted to write
down the wonderful experience we shared in the morning: a nurse, who has two
feminist daughters, when KAryn and I went in for a shower together, not only
approved, but was enthusiastically encouraging and supportive. The revolution
makes itself known in many differing and wonderful ways! Perhaps her daughters
were more than feminists…
This helped me to
get through the terrible day of
confrontation and moving that followed!
I keep thinking of
Audre Lorde—wanting to hear her voice—wanting to get through the barriers that
keep us from real communication. Will that ever happen? She’s at McDowell (Writers’ Colony).
Thursday, March
Twenty-Fourth
An unsent letter to Audre Lorde
Dear Audre,
How angry I am that we never got past the
outward barriers to talk about commonalities underneath. Difference? Oh, Yes!
So many, but within them, the body of differing experiences lie some
similarities—not to be dealt with now—rather the pain—that after that initial
visit at your home—instead of continuing, cultivating, chewing, considering,
cancelling, ect., ect., there was limited contact, nothing more. You were
wonderful. You agree to read for “thisa and thata” until some, probably racial,
misunderstandings, separated us, so that there was nothing in the flesh between
us. Another truth could be that your life was already quite full, but somehow
we always make room for what we want in our lives. Pity!
Because now that breast cancer has spread to
my bone-marrow—eight and a half years later (meeting the statistics) and after
six good cancer-free years—here I am back in the hospital dealing with the
unmentionable—chemotherapy—The Red Devil Adriamycin with its terrible
after-effects of self-chosen (??) nuclear-like attacks into my body. It is
something which may be terrifying for you, or perhaps not: I should like to
know.
So—my amazon sister—can we eliminate the
artificiality that separates us---will you forgive my constant stupidities—and
will you support me in my struggle—which, damn it, is also assuredly yours?
In struggle but
with the deepest regard and affection, Sonny
Sunday, March
Twenty-Seventh—8:20 a.m.
Have lost a couple of days: moving rooms
again took a lot of energy, and I’m in my tenth day, which is crisis time
through next week.
My new room at
KCC 6North is in the back area that I didn’t visit “on tour.” It’s better than
the cramped double rooms—has a window facing another building of the hospital
on the north side—but it’s laid out very peculiarly. There are four rooms back
here, all of which were once isolation cubicles.
I watch pigeons
on the roof crawling in and out
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