Untying the Ribbon and Giving Up Hope

August 31, 2012 § Leave a comment

inverting hope and beauty

Inscribed below symbolic pink ribbons, etched into plastic bracelets, the word “hope” has become the catch phrase in the marketing of breast cancer. Having “hope” and wearing the ribbon may signify solidarity, support and sympathy. But does the Pink Ribbon Campaign “pinkwash” of the difficulties of facing breast cancer? Does making a slogan of “hope” “hopewash” the ugly realities behind the disease? Corporations intent on profiting from the cause have been known to misuse the pink ribbon without donating money to charity. Some offer no transparency regarding where the funds are going. Campaigns for cures turn into a market-driven industry of corporate sales-pitch.  Supporting cancer is good PR. The pink ribbon is pretty, feminine and simple  – everything the disease isn’t.

From Pink Ribbon Campaign’s marriage of charity and enterprise have emerged sponsors such as Estee Lauder, KFC and DuPont, all companies that use cancer-causing chemicals in their products. Whilst campaigns like “Race for the Cure” may raise awareness and money for medical research into the disease, according to many critics, it also brands breast cancer in a particularly insidious fashion, blinding the public to the ethics of corporate responsibility and turning people away from the impact of environmental causes on cancer. It offers a confused message on accountability in the market place, as well as turns something deadly and personal into a slogan and a label for marketing purposes. If Estee Lauder were intent on truly supporting women with breast cancer, why would they continue to use endocrine disrupters in their cosmetics? Or if they wanted to show moral support for women suffering from the disease, why not start an advertising campaign using a model that has had a bilateral mastectomy?

And what about this chosen slogan itself: hope.  I have begun to wonder why this word is so often associated with fighting cancer. Google “hope” and “cancer” and you’ll generate a thousand hits. Why is “hope” associated so readily with cancer? Is the word simply another derivative of a marketing campaign?  How much is hope itself a part of healing?

When I think of my own relationship to diagnoses, treatment and to cancer generally, certainly I have relied on states of “hope” – I desired and expected my treatment would work. I wanted grounds to believe there would be a positive outcome. Is hope alone the most effective attitude to adopt?

I am unsure of what to call myself now: a patient or a survivor. Only four months ago, I had a grade 3 tumour in my left breast. With all the tissue in that breast removed, my senital lymph nodes testing negative, and recent blood tests showing no signs of a hormone that would indicate the presence of permanent cancer cells, I often like to think I’ve closed that chapter of disease in my life. But the pages of the book called “Cancer” lie scattered across the floor. I’ve just tested positive for a disease causing mutation in my BRCA2 gene, which predisposes me to the cancer returning. Born with an alteration in my DNA, I had an 85% chance of getting cancer, and now that I’ve had the disease, there’s a 60% chance of a recurrence. Many women in this situation choose to remove both breasts through a preventative bilateral mastectomy as well as have their ovaries surgically removed through an oophorectomy. With those realities hanging over me and with reconstructive surgery immanent, I still feel present with cancer.

The tumour is gone, yet many aspects of living with cancer still linger. In eliminating the toxins that contribute environmentally to disease as much as possible, I perform regular detoxes, take handfuls of supplements, stick to strict diet, and avoid situations where I might be exposed to unnecessary toxins, including second hand smoke. I take regular trips to my doctors and visit a network of holistic practitioners. Above all, I am continuing to experience the mixed emotional responses following the loss of a body part and the experience of having been through something difficult. I experience days of frustration. I miss the days when I didn’t have to think about these things.

I wonder if looking for a escape through hope out of the discomfort of the present situation is a sincere way to confront that frustration. This isn’t to say, I shouldn’t seek to alleviate physical pain through reiki, seek advice on nutrition through a naturopath, or look for ways to return body to a state of optimal health through healing modalities. But in hoping for something that isn’t – hoping my way through illness and loss, hoping for time  of innocence before I was exposed to this kind of pain – am I being violent to the moment as it is now? In adopting “hope” as an attitude, am I unwelcoming to the present circumstances, rather than seeking dignity in difficult times?

Certainly, hope can help in its ways. To illustrate the power of that word, an experiment was conducted whereby cancer patients were divided into two groups. Each group was administered the same chemotherapy drug in the same dosages, but one group was told the drug they were taking was called “HOPE” whilst it was administered to the other group under the name of “EOHP”, an acronym of “HOPE”.  The test patients who were given the so-called “HOPE” drug responded significantly better to treatment. The attitude of those patients made an impact in how their cells responded to the drug. If patients have faith, treatments, under any name, give “hope” – a reason to expect things will be well. They offer a window to look out from inside the isolating room of illness. Alternatively, left without that window, as when a doctor tells a patient she has a shortened life expectancy, a patient is left – hopeless – that is, with sense that there is no way out but death.

In When Things Fall Apart Pema Chodron writes, “if we’re willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation.” She describes how we live with a collective neurosis to seek lasting security. Hope is an aspect of that neurosis, not only in its desire to constantly seek pleasure and avoid pain, but in its attempt to seek escape from the present moment, a moment which may be painful.

Having cancer was inconvenient. Having a mastectomy and hearing I am genetically predisposed to cancer is unpleasant. It’s been a painful few months. However, I sense that part of that pain comes from living with the collective neurosis that life is supposed to come pre-packaged in tidy convenience, tied up neatly with a pretty pink ribbon. Certainly that is what we go seeking for when we shop: neat packages, pretty pictures. Perhaps my pain comes from the expectation that I am supposed to be healthy, that my breasts are supposed to look like the women in Elle magazine. Learning to live in the dharma, or the spiritual teachings of Buddhism in this case, means being able to “relax” as Chodron writes with “insecurity, with panic, with embarrassment, with things not working out”. “Giving up hope” encourages me to make friends with myself, with my situation, to not run away from death, nor believe there is a “gateway to happiness” through a relationship, a drug, or a “cure.”

“Could we just settle down and have some compassion and respect for ourselves?” Chodron writes, “Could we stop trying to escape from being alone with ourselves?” Relaxing with loneliness and pain, mind you, is not easy. I panicked when I heard news my genetic diagnosis. I felt heartbroken by its implications. I picked up the phone and called someone with whom I sought comfort. I wrote an email and reach out to someone with whom I sought resolution, seeking ground from something untied and untidy from my past. I set up a twitter account, for perhaps in 180 words someone might hear me, bridge temporarily the gap of confusion I felt.  I sought distraction in film. I indulged in an argument in my head to find a solution, a ground in what was groundless. And at the end of all that running around, I stopped and saw it was useless. I gave up hope. In that giving up of hope, I could finally hear the words of the Japanese poet Ryokan who says, “If you want to find the meaning, stop chasing after so many things.”

Nietzsche writes, “If you have a why, you can bear almost any how.” And what’s the why? What’s the meaning? What’s the purpose? In this how of cancer, with what why is life encouraging me to live by?  It changes from moment to moment. At times it’s a chance to show courage. At others, it’s a chance to offer sincere empathy with others who are ill. It has given me the impetus to change tack and permission to dance. Whatever the meaning, I’m convinced cancer and whatever it has given me is not all about me. Viktor Frankl in Man’s Search for Meaning writes that “being human always points, and is directed to something, or someone, other than oneself – be it a meaning to fulfill or another human being to encounter. The more one forgets himself – by giving himself to a cause to serve or another person to love – the more human he is and the more he actualizes himself.”

Could cancer be a tool for self-actualization, a push to serve, to love? Could the heartache of disease be reason not to hope but to giving up hope, to throw myself more fully into what is? Could it help me  clarify my own dignity or settle into the loneliness when it arises, befriending the inconvenient and uncomfortable parts of my life, of all life?

Whatever it has given me, breast cancer isn’t wrapped in pink silk, and it’s taught me that neither am I. It’s a heap of crazy uncertainty, groundless hopelessness, painful frustration, inconsolable loneliness and at times real beauty and connections. And in learning to survive what is, I am finding I am just fine with it, hopelessly untied.


The Embrace of Aloe and Lavender

August 30, 2012 § Leave a comment

the embrace of aloe and lavender

When I was a girl and came home with a wound – an abrasive initiation from the new two-wheel bicycle, a scrape from a play too rough with our collie – my mother held me examining my injury with the tender but keen eyes of a physician. If a minor bruise bled against the pale skin of arm, a gentle kiss assuaged the pain; if the fall had opened it, a caress of aloe vera was sure to follow.

I remember my mother walking to this plant sitting in the corner of the room. The aloe vera eyed us like a thick-skinned grandmother.  With a sharp knife, my mother sliced off one of the plants thick spines and squeezed the gel from it as if in sacrifice from an ancestral body, smoothing the cool ointment onto my hot pain. Afterwards, my wound smelled of the greenest of green, taught in the embrace of the aloe’s jelly.

In London, far away in years from that little girl and her mother’s apothecary, I live close to a narrow, brick-laden, hidden gem of a lane on the border of the boroughs of Hackney and Shoreditch called Columbia Road. On a weekday, even with vibrant shop signs of pink and turquoise advertising antiques, hats, handmade clothing and garden gear, it’s a rather subdued corner of town. But on a Sunday, it fills with horticulturists from all over the southwest bustling with their wares.

“Peonies: two bunches for five!”; “Basil, Thyme, Tarrogan: five  herbs for a tener!”; “White lilies for a fiver!” They yell amongst a congested congregation of people and plants.

The ritual of buying flowers here every week is one of the delights of living. Buskers from Scotland play St. Louis Blues. Every once in a while a double bass appears accompanying a sweet sounding songstress. The road packs with tourists and locals; the air smells of jasmine and jade.

The ritual of visiting the market is like healing journey in itself. Rituals, peaceful and non-harming, have the power to alleviate us in their own right. Whether it’s a morning ritual of meditation, a nightly bath with sage, a weekly trip to a café, the pretext of routine creates a space that holds me in its sanctified patterns. In the Sunday ritual of flower buying, I journey to the market by bicycle passing smiling people carrying bright bouquets through London Fields. The scents and sights of foliage and flowers remind me of beauty and of the abundance of life itself. Once there, I choose a flower that fits my mood, one that might refresh my altar; I feel alive and filled with a simple magnificence. I return home humming with a handful of green and rainbow.

Last Sunday I indulged in more than just flowers.   A gardener had intoxicated me with his lavender. He pulled off a shoot, crushed it between his fingers and sprinkled it into my palm.

“Smell that.” He said.

I was sold. “French lavender”, I thought, “how gorgeous that will look in my aqua blue ceramic pot picked up at yard sale last month.”

Reminded of my mother’s ritual of aloe gelling me when I was a child, I invested too in one of those tough-skinned cacti, my own grandmother of healing to settle next to me whilst I sleep. Just looking at the rich lavender and sturdy aloe reminds me how healing the earth can be, how life affirming the mother is that surrounds me daily. The sight of the plants fills me with gratitude for those silent physicians of the garden, quietly cultivated, and sacrificial in their brilliance.

And it’s more than just their scent, their sight, the ritual of their birth, cultivation, roots and blooming. Lavender is an antiseptic and an antidepressant. The scent lifts moods; the oil soothes rashes and anxiety. The ketones in the plant reduce pain and inflammation. Lavender induces sleep, reduces soreness, prevents muscle spasms, fights fungal infections and prevents scarring. Aloe Vera is an anti-inflammatory, astringent, emollient, anti-fungal, antibacterial and has antiviral properties. It soothes sunburns, scalds, acne and eczema. Taken internally, it helps to heal a host of troubles: poor appetite, IBS, diabetes, ulcers, and asthma.

Spray some lavender oil on your pillow for a good night’s rest. Sprinkle some of its dried flowers in a sachet and lift it to your nose every time you feel low. Find some organic aloe vera juice and add it to your morning smoothie to make your skin glow from the inside. Put these plants next to your altar and each time you see them, bow.

A Misprint in the Blueprint

August 16, 2012 § Leave a comment

a genetic mishap

Strange to think a slip-up in the language of my chromosomes would so harmfully influence the constellations of my fate. Fascinating to think that by taking samples of my blood, geneticists could have spotted such a mutation, unstringing my DNA to lay it out like a long poem to scan with the eyes of a meticulous proof-reader. And what did they see? A lack of rhyme. A devious line break. A mistaken letter. A faux pas. “Oops! Look what the gods overlooked!”  I wonder who the editor in the sky was so long ago in my lineage to have made such a fatal error. Maybe he was far-sighted or just too tired and overworked to see the misprint.

Today upon returning to England, I received a letter from the geneticist informing me the results of the tests I had done months ago.  As it turns out, I’m carrying a disease causing alteration in the BRCA2  protein, which is part of a tumour suppressor gene family that helps repair in chromosomal damage.  Along with BRCA1, BRCA2 plays a role in maintaining the stability of the human genome and prevents dangerous gene alterations that can lead to breast, ovarian and other types of cancer. As the letter tells me, it’s like a ‘spelling mistake’ in my DNA.

Unfortunately, while it’s a relief to know the reason behind my cancer, the news is generally distressing. Less than 10% of cancers are genetic. The presence of this alteration increases significantly my chances of developing another breast cancer, ovarian cancer as well as a string of other cancers.  It means the alteration likely runs in the family, feasibly caused my mother’s terminal illness, could potentially lie latent in the genetic code of my brother, my cousins, my uncles, all their children and may be passed onto future generations. The knowledge that I am carrying this alteration does relieve me of the sense that some lack of attention on my part caused my cancer. I did all I could to stay healthy, cancer-aware and cancer-free. And whilst I do carry this genetic faux pas, if I avoid as much as possible all the environmental and emotional influences of cancer, I can still live a long healthy life. The knowledge has increased my motivation to learn more about the disease, how it can be prevented and keep on track with my anti-cancer regime.

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