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ijustcantsaythatword

mayu and vic's artistic response to mayu's diagnosis and treatment of breast cancer

A Radiation Christmas

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We don’t pause disease for a public holiday or forget about treatment ’cause there’s turkey to be eaten. The schedule continues and for Mayu that means daily radiation therapy. For me that means that in between traveling the east coast to visit family, I visit Sydney to spend the day with Mayu documenting her radiation therapy. Recording its sounds, and experiencing the process with her.  Even joining her as she has a consultation with a specialist.

Beforehand, when I asked Mayu what her radiation therapy was like, she told me it was like a disco with lasers, coloured lights and rotating “mirror balls”.  She didn’t talk about pain or fear, she talked about a disco and asked me to come in and film it.

Arriving between Christmas Day and New Years Eve, I sense something that I might even call “hopeful” in the hospital corridors.  It is Mayu’s second last day of radiation therapy, It’s not the end of treatment though.  Hormone therapy is next and then we will see.

But there is something hopeful which I can’t quite put my finger on.

The next day, after Mayu’s final radiation therapy, I receive a text from her telling me that her final treatment is done and what a milestone it feels like.  She signs off by thanking me for being there during this process.

To me, this project isn’t about Art Therapy, just like other projects where I have worked in hospitals and/or with people undergoing various traumas.  It is about human connection, about a shared experience giving strength to someone.  About not being alone when facing fear and about maintaining the essence of who you are, even through major illness.

In 2017, Mayu’s next stage of treatment will begin and we will continue to make work together that explores her journey, navigating the unknown and hopefully the sharing of this journey along the way gives strength, occasionally.

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Playing Chemo

Mayu: I just can't say the word Macquarie University Private Hospital 27 September 2016 2nd round of chemotherapy Photo ©Michele Mossop
Mayu: I just can’t say the word
Macquarie University Private Hospital
27 September 2016
2nd round of chemotherapy
Photo ©Michele Mossop

It’s a shocking thing

Bashed and beaten and bruised

From cell to molecule to atom

Bent over, barfed and bled

In an edgy orgy sort of romance

Heal me, repel me, tell me, I yell

And I’m still laughing silly

Fuck me with your drugged out mind

Flying trip on a steroid high

And go, go, go, throughout the night

Nab me, grab me, jab my tit

Poison me with drips in my vein

And maybe I like it, want it, need it

A bit of rough tough play

With you by my side

Mayu: I just can't say the word Macquarie University Private Hospital 27 September 2016 2nd round of chemotherapy Photo ©Michele Mossop
Mayu: I just can’t say the word
Macquarie University Private Hospital
27 September 2016
2nd round of chemotherapy
Photo ©Michele Mossop

Repetition Draft

Repetition.
of what?
of waiting.

It’s only a draft,
because there’s more repetition to come.

Repetition in full words
in sentence or
just in slithers.

Monumental repetition
and small insignificant repetitions.

This exercise is called Wall Crawl,
Prescribed after surgery to help facilitate movement.

Crawling the wall,
is a good thing.
It aides mobility.

We expect you to
crawl the wall,
everyday.

In outer space, in inner space.

Repeat after me…….

by Vic McEwan

danpatsu-shiki (hair cutting ceremony)

After several days of severe hair fall out during the end of my first chemotherapy cycle, accompanied by my two very close friends, dancer Tess de Quincey and photographer Michele Mossop, I underwent a danpatsu-shiki. Tess ceremonially cut and shaved my hair. Michele documented the process. We ate together afterwards.

Photo by Mayu Kanamori
Photo by Mayu Kanamori

Upon retirement of sumo wrestlers, samurai becoming a ronin, commencing Buddhist priesthood, entering middle school, becoming a member of a sporting team, military service and much more, danpatsu-shiki, or the hair cutting ceremony, carries a special significance in Japan as a rite of passage. In the present day, YouTube is full of videos of pimply teenagers shaving each other’s hair before joining a club, drunk salary men shaving their boss’s hair for his retirement, and teenage idol holding a danpatsu-shiki with a trendy hair dresser to declare to their fans they are now to become an adult artist.

Photo by Michele Mossop
Photo by Michele Mossop

Here in Australia, there had been couple of danpatsu-shikis I have personally attended. During the farewell party for Japan Foundation, Sydney’s then director Koji Okamoto, his deputy Masaki Baba invited his boss’s 70 or so surprised party guests at their former gallery in North Sydney to take turns ceremonially cutting and shaving his hair inch by inch. When Japanese butoh group Byakko-Sha performed at Melbourne’s Spoleto Festival in the late 80’s, they began their show every evening at the Playhouse in Melbourne Arts Centre with a haircutting ceremony of an Australian volunteer on stage.

Despite having shaved my head for looks, fashion and attitude in my mid 30’s, this time I didn’t want to lose my hair. It annoyed me every time someone said I could try shaving my hair instead of losing it. If you think a shaved head is going to look cool, why don’t you try? I’ve been there, done that, and I remembered the extreme reactions it produced. I didn’t like it.

Loved by heterosexual women who on some level saw it as liberation from the heterosexual male ideal of woman with long hair; hated by people who avoided eye contact because they thought I was a skin head or Neo Nazi; and marginalised by people who averted their eyes because they thought I had cancer and they either felt sorry for me or were confronted by the potential of a life threatening illness.

Photo by Michele Mossop
Photo by Michele Mossop

Until I was in the position myself, I didn’t know, and I would have probably said similar things to anyone else facing losing hair with chemotherapy. But I now know that it angered me every time someone said to me that my hair would grow back. I knew it was said in a supportive spirit, but it didn’t acknowledge the fact that I was grieving. Instead, it belittled my grief, and suggested I was fussing over nothing.

… and if you are one of the many other close friends, who told me my shaven head I looked wise, peaceful and serene like that of a Buddhist nun, I thank you for the compliment, but I must say… I don’t want to become a nun. I want to be hot red blooded and with passionate uncontrollable indecent desires!

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Photo by Michele Mossop

As it is, it took me nearly 5 weeks to make this post, because it troubled me to look at Michele’s photographs and video rushes. My apologies to Michele – her images are beautiful; and my apologies to Tess – her artistic direction and treatment of my hair was exquisite and gentle; yet I couldn’t bear seeing myself going through this ceremony. To me seeing the images felt brutal and harsh.  So I asked my collaborator for this project I Just Can’t Say That WordVic McEwan if he would like to do something with the video footage, but he said he found it too confronting to make something out of it without us both spending substantial time together.

Another close friend of mine, anthropologist Dr Keiko Tamura from ANU, who I stayed with in Canberra whilst researching on my other art project (Butterfly Project), sent me an encouraging email:

Do you remember when you were in Canberra in February, when we discussed the process of metamorphosis on our verandah whilst the three of us had dinner? Could you not think of your current state as a metamorphosis? It maybe at a time similar to when the butterfly is born out of a chrysalis or a snake repeatedly shedding its skin to grow; it must be worrisome to see your body undergoing change, but there is another stage to come. You will be able to withstand these difficulties and grow even further.  – Keiko

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Photo by Michele Mossop

I still dislike the way I look. I wear various wigs (courtesy of De Quincey Co, Liz Stokes and Ken Cleveland) in public instead of showing off my brave new shaven head. I am still coming to terms with the meaning of the rite of shaving of my hair and the passage of this stage in my life. I also know that a rite of passage in some cultures can be scary, even violent.

All I can say for now is that something has definitely changed since the danpatsu-shiki. For a start, I’m not afraid of writing the truth… even if it isn’t all positive and upbeat… which means I am stronger.

Photo by Michele Mossop
Photo by Michele Mossop

Watch this space.

 

this morning, like lovers

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gently falling softly
at turn of every season
like liquid amber leaves, fall
powder snow flakes, winter
cherry blossom petals, spring
cicadas nymph skin, summer
like lovers in each other’s arms
this morning i awake
in my mind
in your embrace
i am falling for you

—- a love poem from my hair to me

 

Am I vain?

Am I vain?

I am scared of losing my hair.

I am frightened of waking up in the morning and seeing my pillow covered with my long black hair or finding a tuft of uprooted hair in my hands in the shower.

You don’t need to tell me. I know it is only hair and that it will grow back.

Why does all this breast cancer stuff make me feel I’m so vain?

Would I keep my boobs? Would I lose my hair? Would I get a free brazilian?

  • Photography by Michele Mossop
  • Wigs, courtesy of Tess de Quincey (De Quincey Co), Liz Stokes and Stella Topaz
  • Digital consulting by Sarah Waterson

sweet nothings and sticky everythings

My cancer has been sent down to Melbourne for a test to see if I need chemotherapy next. I am waiting for the test results.

Video, text, voice, breathing, my left breast mammogram, cogs and wheels in watches.

i am waiting

still, silent, sensual waiting

i am waiting for something to happen

to hear a whisper

heavenly messages from angels

or you in my ear

sweet nothings and sticky every things

i am waiting for a sign to turn left or right

slow down, hearken

my each cell

my each atom

listening

i am waiting for you

to come closer

in wonderment

what will happen next?

i am waiting

Taboo Avoidance II: beautification of the difficult

Beautification of the difficult: collage of my left breast mammogram showing calcification, moon-like outdoor lamp, and setaria grass
Beautification of the difficult: collage of my left breast mammogram showing calcification, moon-like outdoor lamp, and setaria grass

As part of my breast cancer treatment, I am seeing a psychologist. Theoretically, she is there to help me through the challenges of being diagnosed with breast cancer and the treatments to follow. In practice, I think she is helping me with a whole range of other issues preceding the diagnosis, going back to traumatic memories as a child. One of the things that came up in my last session with her was that when encountering negative emotions, instead of acknowledging and releasing it, I had a tendency to internalize them by dissociation, often by talking myself into viewing the situation that caused it and or its effect in the best possible light.

When Vic and I first discussed this project, I confessed to him that I was sick and tired of making ‘nice art,’ because my efforts to do so was blocking my creativity. What I meant was that over the years I had developed a false sense of a higher self, which prevented me from making art that exposed my raw, unprocessed emotions. Not that I was afraid of exposing my weaknesses; I could quite bravely do so, as long as it had been worked through, and I was reflecting back on my less wiser self after a positive transformation had taken place.

Sometimes I encounter art that uplifts, energizes and inspires. They are the kind that makes me want to shake the artist’s hand, like a first year college student, and relay my wish to make art like them. On the other hand, sometimes I encounter art that drains me, makes me shake my head, and mutter to the artist under my breath, “Keep your problems to yourself, I’ve got plenty of my own without having to deal with yours.” I am now wondering if this reaction to the latter had been unfairly judgemental, and lacked empathy for a fellow artist. And like all critical judgements, it had been a response to my inability to face my own demons.

This project has become a way forward for me; to break through those self-imposed creative boundaries, and allow myself to take risks again, because it doesn’t allow the luxury of reflection, processing and refinement. It is unfolding in real-time. It is unruly and unpredictable in a sense that we are creating art in response to events that unfold, and through social media, we are sharing some of the resulting artworks and writing our thoughts as it happens. The work goes out there before I have a chance to edit, re edit, consult, workshop, reflect, edit, and re edit.

Having said that, Vic and I do discuss our work. And our collaboration is truly unique. It can only happen the way it happens because of what we have experienced together as collaborating artists and friends for many years. So I was reassured when Vic said that he would clean up after me if I spewed out my yucky stuff to the world and regretted it later.

So here we go… see where this process takes us.

 

Taboo Avoidance

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The word pet is a signifier that evokes emotions of companionship, love and caring.   But that’s the thing with serious illness,  it changes everything.  The word pet no longer stands for a memory of those warm emotions, in the case of someone undergoing treatment for cancer,  it now stands for  Position Emission Tomography  (pet) scan.

Even our language and our emotional response to it is altered by our illness.

There is both a comfort and a static to be had in succumbing to the process of disease and treatment and the loss of control that evades not only our daily decision making but also our grasp and control of language and memories.

As we explore issues that are somewhat taboo,  we often reach a point of caution “can we say that in public”, “is that ok?” The term “political correctness” has even popped up in our conversation.

I remember the initial discussion Mayu and I had about working on art making during her treatment,  she talked very passionately of wanting to make art from the heart that wasn’t second guessing the concerns of community.  Pure expression from her that might not only be beautiful art but sometimes might be ugly or horrendous.

Sometimes, I watch Mayu and myself second guess thoughts that we have “what if that upsets someone”, “can we actually say that”? It is cancer after all, serious stuff.

I am very committed to the ugly and difficult stuff being said through this project, if that’s what Mayu wants/needs. Redefining social boundaries in terms of disease as we fulfill our desire to express honestly and sometime painfully and to navigate that with a remembrance that this very subject matter is an emotional trigger for lots of people. How do we negotiate it with responsibility to ourselves and with the responsibility that we have to others purely from the fact that we are making things that have a public life.

If we avoid saying something that we wanted to say, because society deems it to be a taboo, is that just another form of taking control away from Mayu?  If we can’t have complete control of our outpouring at a time of disease and treatment, when can we have it? And what then is the purpose of self expression if we can’t use it when we need to in both defence (to protect) and in attack (to protect) from the effects of disease.

Taboo avoidance/taboo embracing.  Deciding whether to whisper or whether to scream, often wanting to do both simultaneously.

by Vic McEwan

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