The Story of Being Sarah

Photograph of Sarah Horton taken by Karen Choudhary

Today I’d like to introduce you to Sarah Horton, author, artist, entrepreneur, blogger, filmmaker, activist and an all-round highly accomplished and creative Can-Do Woman.  I had the pleasure of meeting Sarah through my other blog, The Cancer Culture Chronicles, an insider’s view of living with breast cancer in today’s society.  I found Sarah’s story to be so incredibly inspiring, and I am delighted to be able to spotlight her achievements here today on the Can-Do Women blog. Here is a part of Sarah’s story.

In February 2007, at the age of 43, Sarah was diagnosed with breast cancer.  To hear those words uttered is a moment so terrifying and raw, that one barely has time to think, let alone be able to string a sentence together in any cohesive manner.  Yet, that’s exactly what Sarah did.  Despite being paralyzed with fear (or perhaps “despite” should be read as “instead of”), Sarah began to write in earnest.  On the day after her diagnosis she took a leather-bound journal, had her husband Ronnie take a picture of her at their kitchen table, and  began compiling her thoughts, lists of questions for the doctors, research for treatment decisions; anything that seemed relevant to the horrifying road on which she was about to embark.

Sarah, who lives in the United Kingdom, soon realized that in order to secure the best treatment options for herself that she needed to seek out opinions from the country’s foremost experts on breast cancer.  Whilst her initial consultations and ongoing medical care were provided free through the country’s National Health Service (“NHS”), obtaining opinions from the country’s top specialists was going to cost money, and lot of it.  Now, this was money that was not immediately available, but would need to be found if Sarah was going to receive the best advice before deciding on and commencing her next lot of treatments.  By this time, Sarah and undergone two major surgeries with the NHS and was concerned about making the right decisions about treatment from that point on.

And so, Sarah turned to Yes To Life (“YTL”), a U.K. cancer advocacy organization that amongst other services, provides support to cancer patients in navigating their treatment options. In what turned out to be a fortuitous twist of fate, although Sarah could not have known it at the time, YTL suggested that Sarah set-up a website to help with the fundraising needed to pay for her upcoming private sector medical bills.  At the time, Sarah felt aghast and that she couldn’t possibly ask people for money, however YTL helped her to understand that this might just be feasible option, particularly if the fundraising was framed around her story.  And so with some misgivings, Sarah set up her website.

Sarah started to regularly publish an online diary and extracts from her journals, and created links for breast cancer resources as she came across them herself.  She included a “donate” page and despite her initial timidity in commencing the project, quickly gathered an email list of loyal “fans”.  As time went on and Sarah kept up with her diary entries, her following grew and that group of “fans”  began to metamorphosize into a virtual support network, in which real friendships started to develop.  And fortunately, Sarah was able to receive the financial help that she needed to pay for the ongoing medical opinions from specialist cancer doctors during her initial period of treatment, a time when the most important medical decisions needed to be made.  At this point,  no further fundraising activities were needed, and Sarah was able to move on with her treatment, receiving the rest of her healthcare for free under the U.K.’s NHS.  But she still kept writing her on-line diary.

Everything changes when you receive a cancer diagnosis, and Sarah’s experience was no exception.  In her words, “life changed beyond belief”.  Unable to work, debilitated by surgeries, and other medical treatments, feeling unsupported by family and her old circle of friends, Sarah felt a palpable anger bubbling away inside of her.  Surrounded by a breast cancer culture that seemed to be all about pink-ribbons and feel-good survivor celebrations, Sarah began reading about other women’s experiences, notably Barbara Ehrenreich’s famous article, “Welcome To Cancerland”, and came to understand that she “didn’t like pink” and that it was okay to feel angry at what had happened to her.  And so she kept writing, and reflecting, and being angry that control and choice throughout the whole breast cancer ordeal, seemed to be a consistently hard-fought battle for the patient.  And she began to consciously wonder, why she had developed breast cancer, and why at such a young age? And this made her angrier.

Continuing to write her journals throughout her entire treatment, on one hand, kept organized and safe the immense trove of medical information that amasses very quickly with a cancer diagnosis, allowing Sarah to keep control in navigating her treatment and medical decisions, but on the other hand proved to be a highly therapeutic outlet for  what is a lonely, frustrating and bewildering ordeal. By writing, Sarah was able to make sense of her anger and frustration, in the clear and coherent narrative that had started to take shape.  She realized there was immense power in story-telling, and her reflections on the “why’s” of her illness, and so the seeds of a book manuscript were unwittingly being sown.

By the end of 2009, Sarah’s arduous treatment regimen was almost at an end.  She had endured many complications and continued to fight fatigue and other debilitating side-effects of medication and numerous surgeries.  But she was almost there. In early 2010, Sarah began to feel strong enough to think about going back to work in the filmmaking business that she runs with her beloved husband Ronnie, A Sense of Place.  As well, she wanted to start getting back to some of the other activities that she had enjoyed before her diagnosis, like camping, painting, hiking, quilting, and her beloved allotment garden. It was at a meeting with her business adviser that they discussed the possibility of making a film or publishing a book about her experience.  At this point Sarah’s journals had grown to 80,000 words, and there was plenty of film footage shot by Ronnie during her treatment,  but Sarah was still unsure at this time which project would be the better fit.  In making a decision as to which project, Sarah’s business adviser suggested she meet with a local Liverpool book publisher, Fiona Shaw of Wordscapes.

As it happened, in early 2010, from the increasing popularity and visibility of Sarah’s website, Sarah was invited to a live debate on Sky TV, to discuss her views on the culture of positive-thinking that tends to surround the world of breast cancer.  It was a high-profile opportunity, seen by some 14 million viewers, and would be Sarah’s first foray into this kind of media.  As a result of her appearance, Sarah learned that she was naturally able to articulate her opinions and convey her anger, in a way that resonated with an audience.  And she liked the feeling of that.  After that appearance, and upon meeting with publisher, Fiona Shaw, they watched a clip of Sarah’s television debut via Sarah’s website.  Fiona was impressed with Sarah’s resolve and critical thinking in her views on the breast cancer cancer movement, and from there a book project was born.

Finishing the book at Lyme Regis. Photograph by Ronnie Hughes

Sarah took her journals, and commenced the extremely complicated process of completing and editing her journal writings into a format befitting of an audience, and in a way that clearly stated her politics with regard to breast cancer, but ultimately balanced with the story of her life.  A life interrupted by breast cancer. In order to achieve this mammoth task of completing the book,  Sarah and Ronnie took a trip to Lyme Regis, where they holed up in a little beach shack with no phone, Internet or television, and Sarah went to work.  What had started as a diary and a way to navigate her diagnosis and treatment, was at last a finished manuscript and ready for several months of fine editing with publisher Fiona, and finally, setting and design.

Click here if you would like to purchase this book

In October 2010, the book Being Sarah was published, and Sarah was finally able to sit back and catch her breath.  But not for long. Fast forward to today, and Sarah is now back at work part-time in her business with Ronnie.  She also undertakes speaking engagements, where she speaks out on the issues of breast cancer prevention and the importance of control and choice in breast cancer treatment.  Sarah also recently attended and spoke at an environmental summit at the European Union in Brussels on the issue of cancer prevention and environmental policy.  Most importantly, Sarah is finally now getting back to life’s simple pleasures, but she continues to  be an advocacy voice for those dealing with breast cancer who cannot speak for themselves, and passing on the knowledge of her own experience  with the disease in order to engage in debate and motivate future actions in breast cancer treatment  and policy.

I’m sure you’ll agree, Sarah Horton epitomizes the spirit of a Can-Do Woman, in what she’s accomplished so far, and as she continues to set the stage for raising public consciousness of breast cancer prevention and  meaningful debate within the breast cancer movement.  Sarah,  thank you for all that you do.  There is much to be learned from your story, and I am honored to be able to share at least part of your narrative today in this blog’s homage to the amazing achievements of extraordinary ordinary women like you.

If you would like to know more about Sarah, and read more of her writings,  you can purchase a copy of her book at the link above, or Sarah’s blog can be found by clicking on this link: Being Sarah.  I highly recommend you stop by and join in the discussion.

And here is a sampling of some of Sarah’s films.

A short video of Sarah’s book launch.

The Plot is a delightful piece about the Can-Do Gardeners who garden at  Sarah’s beloved allotment.

“What we love, we must protect” is a short film about Sarah’s recent trip to the European Parliaments summit on cancer prevention and environmental policy

Has an event in your life spurred you to greater action? Have you ever considered writing a book?  Fiction or non-fiction? Have you started it yet?

Don’t Call Your Sisters’ Names

Today’s post comes courtesy of my friend Deidra, who grew up the 1960’s and 70’s, in a heavily Italian-American neighborhood in coastal New Jersey, along with her two younger sisters Toni and Susan. On the street they grew up on, Deidra and her sisters were surrounded by relatives fostering a very strong sense of family and community which has stayed with her to this day.

Deidra had often regaled me with the stories of the childish adventures she and her sisters shared, but what I found really interesting, was that she and her sisters had actually written down these stories of everyday life so that they would be preserved for posterity and able to be shared with generations to come. In fact they have enough material for an entire book.

I don’t think we can underestimate the importance of preserving these kinds of memories, because they are a window into a different time and they are an intriguing reminder of how our lives were shaped. In fact just today, a friend and fellow blogger wondered if she should keep writing her blog, fearing that she had nothing interesting left to say and that no one would want to read about, what she considered, the boring details of her life.

But the thing is, history is being written today in the virtual world. And what a wonderful record it is going to be for those next generations, to read about the Can-Do Women of today. For them to be able to read about their grandparents or parents lives from these wonderful online journals is a gift that we can’t quite yet fully appreciate. Think about the thrill of finding some old piece of memorabilia in your attic from your family’s past. A photograph, a letter, a treasured family heirloom, a diary, or whatever the trigger may be, the thrill of remembering another time and place reminds us that these written records of everyday life need to be thought of as valuable time capsules worth preserving and most certainly worth writing.

Here is just one of Deidra’s stories which speaks really well to the bond between sisters and perhaps how child-rearing practices have changed from when Deidra was a child.

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My sisters…Miss Baloney and Pee-u-san. Those were two of my favorite nicknames for Toni and Susan. They were my two wards on most days after school and on weekends. Everything bad that they did was always my fault and well, since I had to watch over them and take the heat, I could at least call them pet names once in a while. It’s a sib thing. Quite frankly, Pee-U-san was an under-the-skin kind of name for Susan to bear, especially in front of other people, due to the explanation (bathroom-related). However, perpetually pleasant Toni wore the Miss Baloney name with pride. It was sort of like her alter ego given her love of all things baloney – or bologna as is the proper spelling. She would take a baloney sandwich on Wonder Bread over a PBJ any day, without question. It seemed like every kid would back then, and did, but no one would admit to it now, years later. Baloney lost is luster over the years. I’m sure during the 1980’s baloney was linked to some illness or to ADHD or because parents today look at labels and now know what is in the baloney product. Today, parent refuse to serve their kids what the kids in my neighborhood thought was a delicacy.

Anyway, my mother was an advocate especially when we were going elsewhere for this mystery meat. “Go to Schmidts” was all we needed to hear before the three of us, with me in the lead, headed out our door, left at the driveway, right after three houses into the “alley” headed for Schmidts. Schmidts — the lone brick building situated in the alley way that connected our street with the street behind us. We thought the alley was haunted even in the middle of a sunny day. The alley was the spot that all the boys in the hood went to hide during hide and seek although they never got found because no one would go into the alley to look for them. But Schmidts – and the promise of free baloney slices – was too much to handle. On a Saturday especially, how could there be anything but opportunity?

So there we went, me and my two sisters heading off to visit Mr. Schmidt and his six brothers – all similarly named Mr. Schmidt – at the meat place to ask for a piece of baloney. We’d walk in, the smell of cold meat on concrete floors on a summer day attacking us at once, and wait until we saw one of the Mr. Schmidts. “Hi Mr. Schmidts,” in unison announced the three of us. “Can we have a piece of baloney?” Mr. Schmidt (they were almost undistinguishable given their similar bloody aprons, white hair and Germanic, weathered faces) would head over to the meat case, take the biggest piece of baloney from it and slice us up three pieces that he would roll up for us. You would think we hadn’t eaten in days the way we watched him approach us with the baloney rolls, Toni getting dizzy at the site of her favorite food. We savored it, we sure did, monitoring our intake and making it last (we’re talking baloney, not ice cream here).

Ahhhhh....The Stuff Memories Are Made Of.

We would linger around Schmidts after our snack but would never ask for another piece. Actually, Toni would since it was equivalent to her “fix” for the day. On top of that, if my mother didn’t have baloney in the fridge, Toni would be very disappointed that she didn’t ask when she had the chance. I wouldn’t take it; I wouldn’t let Susie either for fear that we would overstay our welcome and not feel comfortable going back the next day to restart the entire process.

 

But we would go everyday. It was just our thing. Our mother loved getting us out of the house so she could smoke and gossip on the phone, we got fed and the Schmidt brothers seemed happy to have us there. But here’s the thing, fast forward to today…what mother would let her three daughters walk alone from their home into a possibly haunted alleyway to visit seven identical old men who ran a slaughterhouse? Are there even places called slaughterhouses anymore? I know there are no kids who like baloney anymore.

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How do you preserve your memories? Are you a blogger, do you keep a diary, are you the family photographer or archivist ? Tell us what you’re doing with your stories.

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