021912. a view born from harmony.

I knew one thing.
I needed truth.
The question was not
How will I
Feel about this body
OUT
IN
The world.
But rather
How will I feel about
This body,
My body,
My flesh,
When I look in the mirror
Unclothed and
Alone with it.
My answer lies
In truth.
I could not live with
Reconstruction.
Its whispers, taunts and tease.
I could not bring myself to
Further burden my
Flesh.
Cut it.
Stretch it.
Stitch it.
Convict it.
Punish it.
For my flesh to carry and suffer the grief of beliefs beyond its control was unimaginable.
This need to speak for it,
Embrace it,
Honor it,
Give it back its power,
Was a want for harmony.
So that my
Conscience
And my
Flesh
Could live as one.

what it's not. and the gratitude of my flesh.

it's not
a victim
of your shame
or mine

it's not
a symbol
of your fear
or mine

it's not
a reflection
of your arrogance
or mine

it's not
an armor
for your struggles
or mine

it's not
a billboard
for your truths
or mine.

it's not fabric to be stitched
clay to be formed
marble to be carved
a book to be read
a song to be sung
a cheer to be shouted
a code to be broken
a mystery to be solved
a key for a lock
or a
puzzle
piece
without
a
space!

it is simply flesh.

MY flesh.

and it is grateful.

for the things
it
is
not.

tulips and eggshells.

comment to "The Breastless Debate".

If this conservative, oppressive, misguided society in which I live in can get away with shoving it's mainstream-shallow-ideals of how a woman's body should look in my face then I have the right to shove these unmeasured thoughtful words back.

I don’t know how many times I’ve said to myself- “this wasn’t a political decision- a statement maker”. The decision to walk the earth without a fake breast was a simple one based on my own personal ideologies and tolerances. However, I am wiling to admit that I am living in a “sociosexual” bombarded/guided society and that any decision about my body and how I “display” myself in the world is informed by my reactions to the society in which I live. I make every effort to guide my inner dialogue with clarity and honesty and to make sure there are no conflicts within my language. I don’t say things like “I wanted to look, feel normal” like so many women with implants and prosthesis say. I don’t suggest that I “disposed of my vanity after my mastectomy” like I’ve read from a woman under-going breast reconstruction. There is nothing normal feeling/looking or vanity-free about breast reconstruction or prostheses. Socially- yes these bodies look normal because clothing aids as a buffer. Naked and alone with the truth exposed, the trickery fails. If we can’t all agree on that then someone is kidding themselves. There is a massive refusal to admit the raw truth behind what supports our decisions as we design our bodies and socially conscious selves after a single or bi-lateral mastectomy. If there is indeed some degree of a sociosexual statement to be perceived from the simple act of refusing anything fake in/on my body then so be it. But no one should misguide themselves and believe, not even a mere comforting second, that the decision to have an implant or two or to wear a prosthesis is not PURELY a socially and/or sexually driven act.

We must all thoughtfully, truthfully clarify our language and acknowledge the very real pressures that surround the manipulation of our bodies- physically and socially. Until women can look in the mirror and empower themselves with their own deep truths, without prejudice and judgment, the continued deception of who or what guides our decisions will be the fist that pummels us more deeply into the depths of what seems like, bottomless oppression.

I'm sick of the implication that moving forward without reconstruction or a prosthesis is the inferior solution. The medical arena as well as the government makes sure we have complete access to and financial support for reconstructive surgery. Amoena provides a "better quality of life" and Nearly You makes sure that we can get the perfect $300+ prosthesis and all the swim wear and bras our little hearts desire. But try to find one- JUST ONE single cup bra (besides the one I made!) or garment that embraces the body with one or no breast. Mainstream America's obsession to look normal and/or deny our own mortality by acts of deception forces women who don't buy into these illusions to find resolve in granny shawls, over-sized t-shirts, dart-less garments, speedos and/or diving gear. I had a breast removed. NOT my damn sense of style!

It could not be more blatant that society wants to deny that these single or no-breasted bodies exist in hopes that eventually we will join the masses- "faking it" while in the peaceful, quiet folds of a pretty, soft, cozy big fat pink ribbon.

"Prosthesis offers that empty comfort of 'Nobody will know the difference'. But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies become visible to each other. For silence and invisibility go hand in hand with powerlessness."
Audre Lorde, "The Cancer Journals", 1980
(Chapter III, "Breast Cancer: Power vs. Prosthesis")

and mere observations here.

vanity.

it can not be killed
or hidden away
it's a lover
in your dreams
and accused
demon
by day.

as i stepped into our shower for the first time following the mastectomy, i was careful not to bump or snag the drains that dangled and slithered under the flesh of my chest wall- (those magical tubes that created a tunnel uniting the mysterious inside with the out). i remember attempting to methodically sort my thoughts: focus. first things first. cleanse. shampoo. pain. lifting arms too high. careful. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) hum a little tune- that might help distract. what's for lunch? when will i be able to paint the closet door and the kitchen walls? should i condition? no it's too painful to lift my arms again. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) exfoliate. should i shave my legs? no. too much work. (chorus: acknowledge it for what it is. you're alive. no chemo. don't cry. don't get emotional about it. don't look down. don't think about how your body use to look.) nothing left to do. and there's still hot water. looking down. rolling the edges of the bandages to test their endurance. discovering the bony rise and fall of my now visible ribs, which defiantly give form through my skin on the right side. and here's where all hell breaks loose. because in that small space of a shower a mountainous avalanche of issues break through the chorus and the gates of focus fail.

in the solitude of that shower i freaked out. overwhelmed with fear and angered by vanity and the politics that would surround this new body. i wanted to separate it all before this shower was over. but i knew that wasn't going to happen. the water was starting to get cold. i accepted that there was some self-pity in there somewhere. but one thing was for sure. at the base of the avalanche aftermath lay a truth. the truth being that my life was perhaps lengthened a bit by having a breast that carried mutating cells that had not yet spread to other parts of my body had been removed. and while my personal ideologies assist in shaping my vanity i would still have to socially reckon with my decision to not have reconstructive surgery. when i finally turned the water off i realized i was going to have to carefully dig through all of the layers. just me. my vanity. and my truth.

REAL awareness. and truths.

"When I walked into the doctor's office, I was really rather pleased with myself, all things considered, pleased with the way I felt, with my own flair, with my own style. The doctor's nurse, a charmingly bright and steady woman of about my own age who had always given me a feeling of quiet no-non-sense support on my other visits, called me into the examining room. On the way, she asked me how I was feeling.
"Pretty good," I said, half-expecting her to make some comment about how good I looked.
"You're not wearing a prosthesis," she said, a little anxiously, and not at all like a question.
"No," I said, thrown off my guard for a minute. "It really doesn't feel right," referring to the lambswool puff given to me by the Reach For Recovery volunteer in the hospital.
Usually supportive and understanding, the nurse now looked at me urgently and disapprovingly as she told me that even if it didn't look exactly right it was "better than nothing," and that as soon as my stitches were out I could be fitted for a "real form."
"You will feel so much better with it on," she said. "And besides, we really like you to wear something, at least when you come in. Otherwise it's bad for the morale of the office."
I could hardly believe my ears! I was too outraged to speak then, but this was to be only the first assault on my right to define and to claim my own body."

the above words are reference to October, 1978 shortly following her mastectomy and is an excerpt from page 60 of "The Cancer Journals" (Special Edition), 1980, by Audre Lorde

and 22 years later.
May 2000.


and 26 years later.
March 2004.

and 29 years later on a Wednesday.
April 2007.

and in the spring.
April 2007.

and in the Fall.
September 2007.


and 30 years later in the summer.
August 2008.

basics.

it was a few months or so following my mastectomy (january 2004) when i called the hospital "mastectomy boutique" where i had my surgery. i had a no-brainer question (or so i thought) but wanted to make sure my needs could be met before i ventured up to the upper-east side of manhattan from brooklyn. i was ready to acknowledge the quandaries ahead of me. not simply "how will i clothe this body"- but how will i embrace the beauty of my lovely remaining left breast without physically burdening the tender-too sensitive-everything-feels-like-steel-wool-against-my skin-because-of-nerve-damage right side? so i dialed the number to the boutique and the conversation went something like this:

boutique rep: hello.
me: hi. i'm calling to make sure that you carry post-mastectomy bras?
br: um. yes. (sounding confused by my question) that's what we are- a 'post-mastectomy boutique'. did you have your surgery here and how long ago was it? single or bi-lateral?
me: i had surgery in january and i had a single right-side mastect... (i was cut off here)
br: do you already have your prosthesis?
me: oh. what?
br: do you already have a prosthesis? have you been fitted for one?
me: no. i won't be wearing or getting a prosthesis...
br: what? what is it that you need?
me: i'm looking for a single cup bra. you have those right?
br: why would you want that?! NO. we don't carry anything like that.
me: oh. um. thanks. (stunned, embarrassed. jaw now open. feeling naive in a new world that i could not relate to at all)
end of phone call.

in lieu of symmetry.

Meet Rhea Belle. A single right-side mastectomy mannequin. Rhea is entering the world free of fear and self-conscious thorns. In lieu of rules and traditional solutions Rhea plans to embrace her form through thoughtfully designed fashions.

Several months after my right-side mastectomy in January of 2004 and proudly moving forward without reconstruction or a prosthesis I was forced to evaluate my (then) existing wardrobe. It became crystal clear as I dressed that the clothes in my closet were no longer appropriate for my body. Every dawn unveiled a psychological and political discourse within myself to either embrace my new architecture or camouflage it. Philosophically I new the answer. However, socially it was not always an easy thing to do.

As my favorite dresses and blouses fell over my form and rested upon the new landscape the emptiness on the right side was always awkward and apparent- like putting on a pair of three legged pants. I gave up buying anything with darts and began playing with knit t-shirts and sweaters using various texture, pattern and fabric techniques to create visual balance. On the days I wanted to embrace my natural form I'd wear one of my creations. On "camouflage" days I use to swing a silk scarf around my neck to drape and fill the flat terrain.

Occasionally I find garments that work perfectly as they are- asymmetrical designs, cowl necks, blouses with attached scarves, draping and pleated/ruffly fronts will balance out the asymmetry. However, cool ones (and not as in temperature) are few and far between and a huge time investment is needed to procure an up-to-date everyday wardrobe. Eventually I began to examine clothing in a new way. Instead of accepting clothes the way they are on the rack I'll immediately start "renovating" them in my mind to work with my body. If I can technically handle the renovation I buy it- if the price is right that is (on occasion some garments become sacrifices to the cause). A pull-over angora sweater has become an empowered asymmetrical cardigan, the buttons on a blouse have found a new asymmetrical center, ruffles on a blouse have been united to one side while the right side was de-darted, ruching creates balance and "scarfin' it" has taken on a whole new meaning for a black cotton tunic with a draping scarf stitched to it. Rhea Belle garments create visual balance and re-create symmetry. There are many sides to comfort and every day is different as my transformed body gracefully invites buttons, zippers or gathered falling fabrics within new terrain. Necessity is the mother of invention. Wearing garments that are created for, honor and embrace my unique architecture is not only empowering it is necessary and crucial to social acclimation in my post mastectomy world.

"The design and marketing of items of wear for one-breasted women is only a question of time, and we who are now designing and wearing our own asymmetrical patterns and New Landscape jewelry are certainly in the vanguard of a new fashion!"
Audre Lorde, "The Cancer Journals", 1980

See Rhea Belle.

Tribute to Audre Lorde, poet and warrior. (1934-1992)

Audre Lorde- Black lesbian feminist warrior mother poet essayist educator activist- died on November 17, 1992 after a fourteen-year struggle with cancer.

"I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect... for it is not difference which immobilizes us, but silence"
Audre Lorde, "The Transformation of Silence into Language and Action"

"For me, the primary challenge at the core of mastectomy was the stark look at my own mortality. Hinged upon the fear of a life-threatening cancer. This event called upon me to re-examine the quality and texture of my entire life, its priorities and commitments, as well as the possible alterations that might be required in the light of that re-examination. I had already faced my own death, whether or not I acknowledged it, and i needed now to develop that strength which survival had given me.

Prosthesis offers that empty comfort of "Nobody will know the difference". But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies become visible to each other. For silence and invisibility go hand in hand with powerlessness."
Audre Lorde, "The Cancer Journals",1980
(Chapter III, "Breast Cancer: Power vs. Prosthesis")

if i could turn
her words into air
for all women
facing breast cancer
to breath in,
to even consider
their fresh crisp truths
i would.

J.S.
photograph by Jean Weisinger

reflections of a historical mystery.

truth is the impetus for the presence of these words. an honest insight into insecurity and/or a curious battle with philosophy and social politics. either way, i am certain that with the eviction of these thoughts from my head i shall be set free. i am certain...

for forty two years (real close to forty three) i have walked the earth with a body designed by nature. two years ago it was re-designed by it as well. in my mind my body is still normal; i had cancer in my right breast, therefore, the breast was removed, therefore, i no longer have cancer or my right breast. this newly designed vessel that i experience life through- and in- serves me beautifully.

then why are there weekday mornings when i pile my favorite weekend blouses and snug t-shirts on the bed after pulling them on and then off after critically analyzing whether or not the fabric is too telling on the right side. too empty. and finally settling for the long sleeved one that is usually too hot for the season but "puffy" enough in the front to not show off anything... at all. and then there's the scarf-o'flauge (see "scarfless in brooklyn" a few posts back for that story).

i know in my heart that breast reconstruction wasn't for me. geeze- i freaked out when i found out that the surgeon who performed my lumpectomy five years ago chose to place three 1/8" long metal staples onto breast tissue and around the perimeter of the excision in order to see the site better on future mammograms. if the thought of these small pieces of metal under my skin bothered me- i can imagine what a mound of anything that would be literally shoved, crammed and forced under my brutally stretched radiated muscle and skin would have done to my personal psychology. and i know in my heart that the $300 prosthesis that lives in my drawer does more damage than good to my integrity. and all of this to avoid looking normal. or would it be- all of this to look normal?

so. why do my words not reflect my feelings when i'm preparing to step out into the world. well, i'm human for one. and live in a world guided, or mis-guided by misunderstood illusions of beauty. so if it takes daily affirmations like "i'm no clown for your enatainment" (in a joe pesci from 'goodfellas' kind of voice) to assimilate or even protect myself from the world around me- then so be it. at the end of the day or more profoundly- at the end of this journey- it's not about what my body looks like- it's how i've taken care of it and respected it. and best of all that i guide it through the days on my own terms.

re-invention.

it was the first summer after my mastectomy and i soon realized that the luxary of wearing layers was disappearing. One night in that twilight between wake and sleep i decided, without evaluation, to have a henna drawing placed upon the landscape where my breast had once been. it wasn't an effort to veil the history... but an effort to reinvent my perspective, language and relationship with this fragile yet powerful piece of body realestate.

the weight of quiet. the possibilities of night...

this post is a gift to co-survivors... a tribute to their role and their instinctual healing powers when the going gets tough.

nights became difficult when I returned home following the mastectomy. with the apartment quite and dark i would become acutely aware of my physical existance. i'd acknowledge the drains entering my flesh, the flatness and numbness when i searched the new landscape. the sensation that i was literally in the wrong body. living someone elses life. aware that i was embarking on perhaps an exhausting journey of re-invention: of my self, my body image, my perspective, my identity, my faith. inevitably this overwhelming mental journey would turn into an emotional landslide and i would weep. i had started to sleep with my walkman in hopes of distraction. one night my twin lay next to me as david gray sang sweetly and privately to me from a "white ladder". though i can be mesmerized by him most of the time- my nightly evaluations were loud and persistant. i wept through the tunes. and the next thing i knew she had reached for my hand to provide comfort. she didn't say anything. just cried with me under the weight of quiet and the possibilities of night.

winter flowers.

I simply do not like, nor do I understand silk/plastic flowers.
It was the final pre-surgery office consultation with my surgeon when I was escorted to a small office with two nurses to further discuss surgery and possible reconstruction options. The moment I received my diagnoses I knew a mastectomy would be in order. I knew my history. I was no longer a candidate for conservative surgery, also known as a lumpectomy often followed by radiation. I had elected this option three years earlier. I was informed at that time that if cancer reoccurred in the same breast radiation would not be an option and a lumpectomy is rarely performed without some kind of adjunct therapy such as chemo or radiation. So, when the diagnoses hit, I new there were very few, if any decisions to make.
I had just sat down when a huge black binder was pulled from the shelf. Inside were polaroids of women with bodies that were vaguely familiar, they had existed only in my imagination until that moment. Things got a little overwhelming and I began to cry. I asked that my husband be retrieved from the waiting room. He'd want to be in on this, i thought. not the decision of reconstruction. But I know him, he'd want to support me, whatever I decided and the idea of being in that room alone, without him, with these images simply felt lonely. Immediately I was deeply sorry and apologized for my reaction to the photos. These were strong, proud women who were further along the same journey I was now only beginning. My reaction jolted me into a perspective that was both humbling and empowering.
Even before my surgeon explained the procedure of reconstruction to me I was over 90 percent sure that I was not going to have an implant. And after the explanation- I was over 99 percent certain. The idea of stretching my breast muscle with a temporary saline implant for several weeks was alarming. Not to mention that my muscle and skin had a high risk of tearing with slow healing since it had been weakened from the radiation treatments. After three months or so of stretching and repairing the muscle I could've had a nice perky new saline or silicone breast with a tattooed nipple. But the idea of having a brand new perky breast on one side was completely too foreign to me. Philosophically it made no sense.
I have never been emotionally or psychologically attached to my rather small breasts (I don't even know my bra size- medium, 32-34B think). I wasn't necessarily freaked out about losing my breast as I was losing it to cancer- the fake breast would just as easily be a reminder that cancer dared trip into my life as no breast at all. So the attempt to look "normal" as in "never having cancer" or "fake it" factor was not an option for me. To move forward, post-surgery, as a single breasted woman was, I can say with deep honesty, a natural, somewhat gentle decision for me.

an idea for a t-shirt:
"there are worse things than LIVING with one breast".

bridges, drains and bows.

simply unveiling...

when my robe was opened in the recovery room to unveil my mastectomy i was met by these bows. i was told that a breast surgeons wife had designed these surgical bras. an effort to wrap this invasive, breathtaking experience in something delicate i suppose.

i remember the morning i went next door to my sisters apartment and asked her to photograph/document my "bridges, drains and bows". i specifically asked her not to include my face in any of the photos. i don't regret that request. on many levels i am sure i was protecting myself. as long as i didn't see my eyes, my telling eyes, i was safe. i wasn't denying that i was involded in this event, this journey, this hike into often dark hills. but as long as i didn't witness myself "in it" i could keep treading without seeing the fear looking back at me.

i threw the bra away several months after surgery. in an effort to be pratical. embrace the over-and-doneness of it all. i do, however, regret this- for as i reflect- it was an object wrapped in curious metaphors.

sunrise, day 2.

it was early morning, at the explosion of dawn when, as usual during the 3-day hospital stay for my mastectomy, i was awakened by my roommate’s television. she slept during the day and kept her light and television on all night. this actually didn't bother me. somehow i knew she was having a difficult time. other than her occasional, soft moaning she was very quiet. the muffled conversations that i could hear from behind the curtain with her doctors were strained and discouraging in tone. i would gather from them that her recovery (the nature of her surgery remained a mystery to me) was slower than "expected". i never actually saw her.

i awoke with a crisp clarity of my surroundings: seeing my iv bag and behind and above it- the stream of muave country roses that rippled just below the ceiling on the wallpaper border. basically alone in this room i became intensely aware of my presence and being grounded in the moment. metaphorically i would say i was standing on the edge. right then. right there. a clear vivid view of falling apart and staying solid lay before me. i turned to look out of my window and was met by a clock tower across the east river. the sun bore through it to display a sky bursting with burning orange and that icy winter january blue. a silent voice cradled me. it had birthed from my heart, my guts, my soul and deep from my conscience to rescue me. "stay cool. just stay cool" she said.

velcro with white- the color of surrender.

i was warned/informed by my surgeon that following my surgery i would be encouraged to view/acknowledge my mastectomy. so, i was still in a "recovery" room with my husband when a smiling, good spirited woman came in and announced with a smile that "we" take a look at the site. i was in fine spirits, a morphine drip slithered under my skin and so far I had been pretty "matter of fact" about this event. i was now emotionally neutral after the initial shock of diagnosis. pure, simple survival mode. the hard part was over, surgery. i was now on a high- not only morhine, but a psychological high. i was relieved that I had covered this quite unfamiliar, unbelievable terraine so far, and I was still relatively, elasticly sane.

no turning back. no turning it off. no walking out or away.

my robe was opened to unveil the delicate nylon surgical bra-contraption. two things etch my rather peaceful memory of this moment: the expected soft screaming of the velcro and the beautiful whiteness of my skin against the virgin white bandage strips- gracefully bridging the fresh sliver within the smooth, flat, unexplored landscape.