My Friend Sarah

This year I have spent a lot of time in Liverpool. Yes! The Liverpool of Beatles fame in Northern England. I was surprised to learn that Liverpool's climate actually rarely sees snow because it's temperate maritime and the city is a recipient of warm bands of Gulfstream air. So this is why I've seen daffodils growing in Liverpool's parks in February. Spring comes early in Liverpool.

I've meandered down Penny Lane in March and have been a regular visitor to a wonderful public space known as an "allotment". It's a kind of cooperative where the good citizens of Liverpool may rent garden plots to raise fruit and vegetables or whatever their inner gardener desires.

I've clomped around in garden beds and dug for spring onions of all colors, fresh bulbs of garlic, and delicious little new potatoes. I've picked tomatoes and cucumbers and wondered aloud what to do with them all. I've even picked a pomegranate. A tropical fruit grown in Liverpool? Must be that Gulfstream air.

I've strolled down flower and tree lined rows of allotments. I've shaded myself under an apple tree and I've marveled at the bounty of the most beautiful pear tree I've ever seen. I've sat on the deck of the allotment shed, sharing a picnic and catching the last few rays of summer sunshine and I feel like I never want to leave.

Liverpool Cathedral
Image Source: Visit Liverpool

I've been on some delightful walks through the city of Liverpool, and have enjoyed visiting a 16th century synagogue and other historic landmarks. I've been for a ride on the the local bus, to a street market in Granby, a blighted area of town, which the residents hope will soon become an area of urban renewal. I could certainly see its charms the day I was there.

I have ambled through little villages, that are "just what one imagines an English village should look like." Lushly green, cosy little cottages, crumbling graveyards and medieval churches. I've hiked through gorgeous meadows and woods, and I've stopped for picnics at some breathtaking vistas on the miles of the Dee estuary, a short drive from Liverpool.  I've even been camping in a forest and was treated to an impromptu ukulele concert and singalong around the campfire on a trip to Lincolnshire.  And last but not least, who could forget icecream in the seaside town of Wirral. The town that no longer has a seaside, but my oh my the icecream was still delicious and worth the trek.

Readers, I'll stop here.

I haven't really been to Liverpool.  I haven't really been anywhere this year, except in minds eye. This year is littered with cancelled vacation plans due to medical issues. One crisis after another. I just don't seem to be able to catch a break. And with each new medical crisis I lose a little bit more confidence in being too far from the safety of home and my medical team. And as my confidence erodes, and my physical self gets a little weaker, I find myself leaving the house less. My world is shrinking right before my eyes.

And this is why I am so grateful for my friends.  Today I'd like to spotlight my friendship with Being Sarah. We met virtually after reading, and becoming ardent fans, of each other's blogs.  We struck up an email correspondence which has now morphed into regular Skype chats. A real friendship.

Sarah possesses a wonderful creative spirit and a zeal for life which is quite infectious. Something that has been in short supply around my house of late. But really one of the qualities that I love about her is that she has invited me to see life through her eyes. Sarah also happens to be a filmmaker, as well as an artist, author and blogger, so any opportunity she gets, she will send me short films of her adventures around Liverpool. I'll watch the film and, of course, have a ton of questions for her, which we'll cover in our marathon Skype chats. I like to talk about the details you see.  Sarah even came to visit me in June this year, and I had a wonderful time showing her my favorite spots in New Jersey and New York, and in 3D!

The thing that I seem to need most these days is brain stimulation.  My world is so much smaller now.  I spend so much of my time dealing with all things cancer, so I need to hear about the kinds of experiences that don't involve doctors, hospitals, tests, treatment or otherwise.

I hear constantly that people don't know what to say to me, which invariably translates into saying nothing at all. I hear that people worry about not wanting to bore me or somehow seem disrespectful for sharing the "mundane details" of their lives, which again, usually translates into saying nothing at all. But the truth is,  I can't live my life the way I want to live it, including the "mundane details." And who wants to talk about cancer, or listen to platitudes all of the time? I need to hear about other people's lives.  Even the mundane details.  I crave them. What's happening with your job? How's the family? What did you have for dinner last night? Have you seen any good movies lately? What's your favorite color? Details. Please, I need details.

Whilst not everybody is lucky enough to have a friend who is a  filmmaker,  this idea of sharing the "mundane details" of one's life with a friend who is ill,  whether it be via a film (amateur or professional!), photographs, postcards,  email, snail mail, a real life conversation (shock!) or some other means,  is golden.  It goes such a long way in helping to reduce those feelings of isolation, and can expand a person's shrinking world, if only for a couple of minutes. When I consider the friends that are currently in my life, their comfort in being able to share the details of their lives with me is a common thread and Sarah is tightly ensconced in that small circle. There is no insecurity on their part that I don't want to hear about it.  They know that I do. But they're also comfortable in letting me talk as well.

And so dear Sarah I say to you;

Thank you for the gift of your friendship at a time when I truly wondered if making new friends was even possible. Thank you for allowing me to talk when I need to. Thank you for giving me these wonderful glimpses into your life. Thank you for being there for me.
You enrich my life more than you know.

Thank you for just Being Sarah.

And for these wonderful films!

1. Granby 4 Streets

2. Spring Begins

A day of boating on the Jersey Shore with my friend Sarah.

Photo credit: My dear friend Jo, June 2011

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This post is dedicated to  Metastatic Breast Cancer Awareness Day and the friends and family who support us through thick and thin.  There's a blog post for each and everyone of you. 

Miss Pink Elegance

This essay was created in collaboration with a group of writers and advocates who are deeply concerned about the lack of progress being made in the eradication of breast cancer.  We believe that it is time to look beyond the feel-good messages and demand real change.  

You may reproduce this article, in its entirety.  You may not make changes to it and you must include this attribution and a link back to the blog that posted it.  

We encourage you to spread the message and to take a stand.  Thank you for getting involved.   

This post is republished on this blog via Uneasy Pink.

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Recently, a story about an upcoming fundraiser appeared in a Pennsylvania newspaper.

A local Susan G Komen for the Cure Foundation® affiliate is hosting a fashion show, luncheon, and auction fundraiser later this month. In addition, they are crowning the first “Miss Pink Elegance.” Event co-chair Joanne Arduino explains:

"This year marks the first crowning of "Miss Pink Elegance," an honor that will be awarded to the guest wearing the best pink outfit...Guests can come in elegantly or outrageously in pink," she said. "The winner will be crowned Miss Pink Elegance the First. They'll get a sash, a crown and a dozen pink roses. We'll have someone who sings 'Miss Pink Elegance.' And she'll strut down the runway."

On first glance, the triteness of a fashion show and subsequent crowning seems an affront to the seriousness of breast cancer. If that’s all there was to it, this would be a simple matter of taste. Unfortunately, there's more to it. 



Sarah Horton, author of Being Sarah  had some insightful thoughts about fashion shows in her book. She references a blogger, JaneRA, who wrote about the issue of restoring femininity post-breast cancer and about Audre Lorde’s insight into the concerted effort to hide the physical impact of the disease.

"… [I]t’s the message behind this that upsets some of us. Jane refers to the central London offices of a national breast cancer charity, and the photos on the walls of the previous models, all smiling...you can’t miss the point that ‘ultra feminine, attractive, youthful and happy’ is how you’re supposed to look after breast cancer... Audre Lorde calls this a ‘conspiracy on the part of Cancer Inc’ for women to appear ‘no different from before’ and show the world that ‘nothing has happened to challenge her.' "(pg 239)

A lack of gravitas shown by this and many other pink ribbon fundraisers is only the tip of the pink iceberg. Fashion shows, parades and other celebrations are popular because people want to feel good, to believe that they can both have fun and make a difference. Kitschy fundraisers become popular and propagate. Eventually the dominant message becomes that breast cancer is a playful celebration; that women can not only be restored to a societal image of beauty, but that they can be better than before. In this instance, the best assimilated, most fully restored person who receives the most votes will receive a sapphire crown, a pink sash and a happy serenade. 



Harm is done to people who don’t fit this mold, who on top of having cancer receive blame for not surviving correctly. For many, the truth of breast cancer is not pretty. There are women who can’t or don’t have their bodies restored to their former glory. There are women who suffer greatly from side effects of the treatment, physically and psychologically. There are women, many women, who do not survive this disease at all. In fact, anyone who has received a breast cancer diagnosis is at risk for recurrence, for a metastatic cancer that won't be cured. And there are women who are uncomfortable, for a myriad of reasons, with the mantle of triumphant survivorship. For many women the words “guilt, frustration and anger” represent breast cancer; not “pink, fun and elegance.” 



Where do these women go for support? Who listens to them? Consider the words of Kathi from The Accidental Amazon.

"Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover... is that everyone ... seems to assume that you are now the local poster chick...everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you."

Kathi's realities of living with breast cancer do not fit in a festive environment. This "Poster Chick" is supposed to fight cheerfully for herself and for everyone else.

 Gayle Sulik explains in Pink Ribbon Blues.

"Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking. Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear."  (p. 338)

Many of us, the well-intentioned and generous people who have been affected directly or indirectly by breast cancer, want to think that all of the money we’ve spent, all the tears we’ve cried, all the pink we’ve worn has made the world a better place. But few acknowledge the less-than-pink truth of breast cancer: the indignities of a disease that still kills, can happen to anyone and has no cure. The number of people dying from this disease has barely budged in decades. 



Until we change the narrative away from feather boas and pink roses, these petrifying facts won’t change. JaneRA, the blogger quoted by Sarah above, died in 2009. Audre Lord died in 1992. In fact, the WHO says that 460,000 people died worldwide from breast cancer in 2008. In Pink Ribbon Blues, Gayle Sulik states that despite more treatment given and more money spent, a woman "with invasive breast cancer has about the same chances of dying from the disease as she did 50 years ago.” (p. 159)



So where do we start?

Criticizing breast cancer fundraisers can be tricky. After all, what works for one person may not work for another. Empowering people’s authentic selves means making room for a diversity of opinions, but it also means speaking up fiercely against the agents of disempowerment. 



Apart from the complexity of nuance, it opens you up to the risk of being labeled bitter, angry or plain ungrateful. This recent blog post  labels people who question the dominant system “anti-pink.” Gayle Sulik, author of Pink Ribbon Blues.  “Anti-pink is a call to ‘think about pink’–to look at all of the outcomes of how we as a society are organizing around the cause of breast cancer, the positives and the negatives, so that we might recalibrate our actions to make the most of the positives and minimize the negatives.”



We need to make room for the darker shades of color palate. We need to think about pink. Before being swept away by feel-good celebrations swathed in pink, consumers and philanthropists should ask themselves some basic questions.



- Where is my money going?




- What has the organization done to prevent or eliminate breast cancer?




- Does this organization support people with breast cancer at all stages?




- What is the organization’s mission and how well does it live up to it?




- Does the organization use evidence to inform its actions?




- Do I want to support this organization and its messages? 



For more questions to ask, see Breast Cancer Action's Think Before You Pink website.  

The answers to these questions might be uncomfortable and unpopular, but they are the only way to get to the truth and, ultimately, progress.



JaneRA
1949-2009

Consider JaneRA’s final words in her posthumous post.

[N]ot for you are the appearances in Fashion shows…airbrushing the reality of this disease into some designer must-have condition. You will decide on a harder more radical route … a movement will begin to challenge governments, and research scientists, the medics and the charities...



Winding forward to say 2050, I hear you talking to your grandchildren about the old days when breast cancer still killed, and generations of women died years too soon.

Now we have a choice. Will we put our heads in the pink sand and lull ourselves into believing that fashion shows are good enough, or will we stand up and demand real change?

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How Being Sarah Came To Be

Through writing this blog, I've had the pleasure of "virtually" meeting so many incredibly talented, intelligent and interesting women.   Many of these women are also bloggers, and we enjoy flitting around cyberspace and visiting each other's sites, catching up on the latest news, engaging in lively debates, talking about life's highs and lows, appreciating and commenting on each other's writings, despite completely different styles and perspectives, and providing a wonderfully powerful network of support, helping each of us make sense of our cancer ordeals.  Many others visit our sites simply to read, reflect, and perhaps to remind themselves that they are not alone with their thoughts and struggles with this disease.

Indeed Chemobabe just published an amazing post on the power of this virtual community in "Over Our Heads" where she says;

"I cannot overstate the value of having a community of people who understand life under the dangling sword. Yet it’s hard to find companions on this journey. Typical support groups are not a match for me because I am unusually young to have this disease. Other women have different reasons for feeling alone."

One of these women whom I've been able to connect with is Sarah Horton, who writes a blog at Being Sarah .  Sarah has impressed me with the way she is able to articulate and channel her anger at having breast cancer, but also with the beautiful way in which she writes about life's simple pleasures, reminding us of the importance of finding a balance in coping with this hand that we have been dealt.

The other thing that struck me about Sarah, is that only three years after being diagnosed with breast cancer she achieved the tremendous feat of publishing her book, "Being Sarah", a narrative about enduring breast cancer, her anger at having developed it in the first place, her views on the politics of the breast cancer culture, balanced with how she has continued to live her life in the face of this adverse circumstance.

Recalling the ordeal of my first round of treatment back in 2004, after my initial diagnosis, all I can remember is how overwhelmed I felt; the constant struggle against the side-effects of chemotherapy, as well as the physical debilitation of all those surgeries and radiation.  But mostly, I just remember the constant mind-numbing fatigue, and the daily struggle of just getting out of bed and putting on my clothes to be ready to face a new day.  I barely knew my own name.

This begs the question as to how on earth does anybody endure breast cancer treatment AND write a book on top of it all? My mind boggles in thinking about this, which is why I was so interested to hear more about how Sarah was able to accomplish this incredible feat.

Please click here to read 'The Story of Being Sarah", published via my sister blog, Can-Do Women.