Be The Change Part 1: Waving Pink Ribbons December 14, 2011

As I finished up school for the semester, Pinktober came and went along with most of the marketing that goes with it. The prevalence of pink ribbons everywhere reminds me to celebrate my own life, as my breast cancer surgery took place dead center in the middle of October three years ago. Back then, the fact that someone was wearing a pink ribbon made me feel like they were on MY side even though they didn’t know me – or know I was undergoing treatment. I felt a part of a sisterhood instead of a freakshow.  Knowing I was not fighting alone saved my life just as much as my treatment, giving me courage and support to do what I needed to do no matter how hard. That is not a small thing to someone newly diagnosed.

But this October, my email was full of blogs from breast cancer survivors who were fed up with the marketing surrounding Breast Cancer Awareness Month. Tired of Komen’s attempts to copy-write the term “for the cure” and lack of actual dollars spent on finding that cure (relative to furthering Komen brand marketing), these women were justifiably frustrated. As the media portrays survivorship with the effervescent cheerfulness of pink boa’ed women marching, women remain sick, un-cured and looking for away to prolong their life with some dignity. There is justifiable concern that we have glossed over the reality of a disease we barely understand and don’t know how to prevent – one which we can only treat with highly invasive methods, and have not come close to curing. Many women are not celebrating during breast cancer awareness month; they are at home on couches and in bed, frustrated that they are forgotten, knowing they will likely die before a cure is ever found. An unpopular story in the media seeking a positive light on the current “favorite” disease.

I understand.

As we celebrate or survivorship, these women with metastic cancer, who have lost their hair AGAIN, who are suffering from lymphedema and having to display handicap parking stickers before they are forty because they are too sick to walk, must not be forgotten. For them pink ribbons are not enough. Too frequently these women, still fighting long months and years after their diagnosis, get pushed to the background in the “fight”, while we who have survived march and wave pink ribbon flags, and go about our lives more or less as we had before.

I understand the frustration around pink ribbon everything and fundraisers that don’t result in significant change. But, we must start somewhere. “Small” things can make a difference while we also keep pushing for better services, treatments and a cure.

Recently, a breast cancer blogger I follow wrote a blog piece about whether or not it is okay to “indoctrinate middle school kids into the pink ribbon culture” by public schools endorsing a breast cancer fundraiser to “pink the town”. These youth raised significant funds for the program Breast Friends, (a resource for ALL women’s cancers) that provides (among other things) financial resources for women undergoing cancer treatment – a highly worthy cause.  And yet, she felt questions were raised regarding this praiseworthy fundraising event.

The article questions making breast cancer more important than other diseases, and raises concerns regarding the predominance of “preventative” education – inaccurately promoted educational content for a disease we have no idea how we get. Then there is the disturbing prevalence of using a disease to raise money for an organization in which only a fraction of the proceeds go to good use that is tainting even worthwhile fundraising efforts.

But, I think our frustration in how slow a cure is coming about causes some of us to be blind to the good that this movement has done and how  small things have drastically impacted the lives of women. Even the fact we TALK publically about breast cancer now is astounding to me.  All this hoopla has made a difference.

The thing that is most important about pink ribbons, a whole month set aside for awareness or kids saving pennies, is that it empowers people to make a difference in someone’s life.  Small change DOES matter in terms of resources and emotional support for patients and survivors.  And when we look past the marketing, we can choose to see fundraisers and pink ribbons as a reminder that we are not alone. People care about our struggles and want to do something – even children too young to know what the loss of a piece of our womanhood mean or what the reality of fighting for our lives looks like.  Empowering people to make even a small difference doesn’t take away from anyone – it opens our hearts to give more, and also teaches us to receive.

We survivors need to know we are not forgotten – all of us – healed, sick, celebrating or still in treatment. Cancer goes on for us every day, long past when the people around us have forgotten that we ever had it.  We still have to look in the mirror and face our fears in the doctors’ office.  We have been tough, but we still have our moments and people want us to know they haven’t forgotten.

Pink ribbons are not just a marketing campaign by big business, though it may have started that way.  It has morphed into everyday people trying to show support and make some tiny bit of difference. Though  breast cancer is no more important than other cancers,  it just happens to be one that so many of us are profoundly affected by through no fault of our won.  Every day people need to feel empowered – they need to feel like they have something they can do.  And, to the newly diagnosed, this outpouring of love and caring disguised as a pink ribbon, makes them feel less alone in days filled with  grief, uncertainty and fear.

Without a doubt we need to pay attention to how we donate and show support — and there are far more effective organizations than Komen. Funds are needed every month, not just October and not just for breast cancer. But because one organization has used a disease to its own marketing ends, does not mean that we should turn our backs on doing what we can –regardless of our age- to show support and make someone’s life a tiny bit easier.

Though pennies from kids may not find a cure, they will keep the power on in the home of a woman spending her money on cancer treatment. That deeply affects a life, as a does a support phone call from a volunteer or a ride or hotel room while undergoing treatment – all services that are funded by donations large and small by people who care.

Awareness, over-the-dinner-table-conversation, and pennies put into action by every day people are the ONLY way we are going to affect change in any sphere – politically or medically. Choose organizations that provide patient quality of life services or local, community resources. Keep the conversation alive, stay educated and use/donate your money wisely. We absolutely need to hold big fundraising establishments like Komen accountable for how they spend our donated money.  But don’t throw the baby out with the bathwater – donating to the right organizations can make a huge difference in the day to day lives of cancer patients. And showing support to patients goes further than you may think.

There is also a more global reason to not question whether kids doing a fundraiser is a “good idea”. Because those kids felt they made a difference, they will grow up believing in the importance of doing what they can. Our world needs less cynicism and more empowerment. As we teach our youth they can make a difference, they will feel their actions matter. And they will seek out other ways to make a difference.  Someday it could be you that benefits from their unselfishness. Our actions always matter.

This is how we change the world. Change happens through small events -each of us doing what we can – large or small. Ghandi said “Be the change you want to see in the world” . Change, revolution, healing, and a cure start with each of us.

For more information check out:

Breast Friends

LiveStrong

The American Cancer Society

The Young Survival Coalition

The American Cancer Society Relay for Life

“Just use it with some grace….” November 17, 2010

This summer I had an experience that made me question not only my general competency and wisdom but my very right to do the very things I feel so compelled to do.  While the details of what exactly happened would be meaningless to the outsider, it is enough to say that someone I loved deeply had negative things to say about my skill and knowledge doing something that meant a great deal to me.  The fact that I valued this persons’ opinion a great deal intensified the deep feelings of unworthiness and doubt that bubbled out of my soul along with a tide of endless tears.  While the grown up in me was able to recognize that this person had something firmly wedged up her butt and that the issue was within HER and NOT me, the inner child had a meltdown.  And the child’s deep sense of being afraid she might not be good enough and wanting to avoid this pain at all costs saw me retreating into my shell and hiding for weeks.

This is not a new thing for me, although I had thought perhaps the wisdom gained in the past couple of years had caused me to grow out of it.  I am known to be reclusive – that would be my positive spin on what others might call “Robyn is avoiding human contact whenever possible”.  Years of bad personal decisions on my part left me feeling like I should not subject other people to myself except when I was at my best – which was not very often.  I  know a lot of people in my community and the idea that they might see me when I am not living up to the image I wanted to present can be horrifying.  Add to this a history of abuse, the constant physical and emotional contact of being a mom and the shallow, ethereal contact of working retail and you begin to see that any kind, relatively deep connection with an adult can make me squirm.

Yet, the flip side of this is that I am a highly intuitive and deeply spiritual person with a overriding desire to help others find a truer, more deeply fulfilling path for themselves in this lifetime.  I have studied with spiritual teachers who claim that I have a profound “gift” that is not intended to be kept to myself.  So I walk an uncomfortable path  — wishing I could just be left alone in my garden and my writing and not have to deal with anyone  unless they were on Facebook or in my golf foursome – and knowing that I have a greater purpose that requires me to extend myself beyond my comfort zone.

So I wonder what is the matter with me that I, a LEO for crying out loud,  would prefer to avoid attention and unnecessary connection under most circumstances. I know that I know what I know. But how can I be so devastated by what one person has to say about my performance?   Is this a self esteem issue?  So I looked it up……

Wikipedia defines Self Esteem as:

Self-esteem is a term used in psychology to reflect a person’s overall evaluation or appraisal of his or her own worth. Self-esteem encompasses beliefs (for example, “I am competent” or “I am incompetent”) and emotions such as triumph, despair, pride and shame. A person’s self-esteem may be reflected in their behaviour, such as in assertiveness, shyness, confidence or caution. Self-esteem can apply specifically to a particular dimension (for example, “I believe I am a good writer, and feel proud of that in particular”) or have global extent (for example, “I believe I am a good person, and feel proud of myself in general”).

Psychologists usually regard self-esteem as an enduring personality characteristic (“trait” self-esteem), though normal, short-term variations (“state” self-esteem) also exist.

Synonyms or near-synonyms of self-esteem include: self-worth,^[1] self-regard,^[2] self-respect,^[3][4] self-love (which can express overtones of self-promotion),^[5] and self-integrity. Self-esteem is distinct from self-confidence and self-efficacy, which involve beliefs about ability and future performance. (Wikipedia)

So things seem okay here. I certainly don’t feel like what I lack is self-confidence.  If I had to answer the question, I would say that my beliefs (currently) are that I am strong, brave, more or less smart, a decent writer, a loyal friend, a good listener and holder of space to instigate healing for people.  Occasionally I am also smart, beautiful, and fun to be around. My behavior would certainly reflect someone who is confident, strong willed, and out-going. I believe that I deserve good things and am still waiting for my fairy godmother to help me purchase the winning lottery ticket.

But as I write these statements about myself – and indeed, the very act of writing itself — makes the sirens go off in my head and I hear some nasty 12 year old girl start shouting at me about how I am so stuck up  and  full of  myself.  “WHO ARE YOU TO THINK YOU HAVE ANYTHING IMPORTANT TO SAY, MUCH LESS WRITE OR TEACH? YOU ARE SO NARCISSTIC AND SELF-CENTERED!” she shouts as she pokes at me.  She is a nasty little thing, and even though I don’t like her, somehow she latches onto the core of all that I am and chews holes in my soul like a moth in my sweater drawer. So, quietly I try to go about the things that I am driven to do, and hope that I can fly under the radar of anyone who will be the physical manifestation of that adolescent demon bitch in my head.

And so I keep myself to myself more or less. Even while I know I have many fabulous characteristics and loads of wisdom to share, I am acutely aware of all my failures and very public mistakes.  Somehow I am ashamed of being human. For some reason I hold myself to an unrealistic moral standard that I would never expect of anyone. I know this and yet I have a hard time moving past it. Instead, I play an outgoing, self confident person in the real life movie about me. The vast majority of people who know me would be shocked at the level of inner angst they never see. Sometimes I draw strength from the fact that if I knew me only as other people knew me I would think I was pretty cool and would skip over the messed up parts.  It is probably a good thing we CAN’T see each other’s inner lives or we would all be in a cave waiting to be rescued from the crazies!

This is all compounded by the fact that I dated someone who was once, in the new age circles of the 1980’s, relatively well known  and even in the year 2000 was still riding on his supposedly  enlightened mystique. He was essentially a good guy, but he was from an era and a healing approach that was very ego-centric and arrogant. The end of our relationship began when I said I loved him, but I didn’t believe in his therapeutic techniques. Well meaning though he was, he was benignly arrogant and narcissistic, and did not apply the things he taught to his every day life. Which were the very things that terrified me that I would be accused of. Having that mirror in front of me made me quit teaching workshops and my counseling practice, because I felt that since  I was not even close to achieving for myself what I was teaching others,  I had no business acting like the pro.   Even though I knew that the concepts I was talking about worked, and I believed in them, I felt I had no right to teach as I was not “Master”.  Was this a lack of self confidence?  Was I being realistic?  Was I just hiding?

One day I spoke to one of my teachers about this and he looked me in the face and said to me “This humility does not serve you. Who are you to determine to not use the gifts that God gave you?”

HUH? My teacher, a man whom I respect not only for his knowledge but his lack of pretention,  is telling me that I am down-playing myself too much?  Being raised in a religious family, I thought that humility was EXCPECTED of us as spiritual people and especially as a woman. Was he suggesting that I had it wrong?

And so I turn to Wikipedia again wondering what is humility….

Humility (adjectival form: humble) is the quality of being modest, reverential, even politely submissive, and never being arrogant, contemptuous, rude or even self-abasing. Humility, in various interpretations, is widely seen as a virtue in many religious and philosophical traditions, being connected with notions of transcendent unity with the universe or the divine, and of egolessness; by contrast, some schools of thought are sharply critical of humility. (Wikipedia)

Right away I chafe at the idea of being submissive but the rest of it rings true for me.  I want to be modest, reverential, and never arrogant.  Wikipedia goes on to say….from the Catholic tradition no less….

Humility is defined as, “A quality by which a person considering his own defects has a humble opinion of himself and willingly submits himself to God and to others for God’s sake.”

I am brought full circle to the moment in which someone I loved said bad things about how I was doing things that I loved and felt called to do.  Somehow, as much as I rebelled against Catholicism growing up, the very idea that I am submitting myself to GOD/GODDESS/the Divine/Great Spirit for his/her sake gives me courage. I do not write, volunteer, fire-tend, teach, or speak out because I want anyone to feel any particular way about me, or because I have something to gain. I am propelled along this path in the same way the cartoon character Wallace is propelled along by the robotic pants in the cartoon short “The Wrong Trousers”.  I have always felt, deep down inside that I was being called….that I had something to say, in a way that people needed to hear that was completely independent of the person I would identify as ME.

So long ago my teacher challenged me to not think that I should shut off the gifts that God gave me because of my own fears of how I would be perceived.  Now, as I write and stick my neck back out there again with so much fear and trepidation of being judged harshly, I am reminded of the Martha Graham quote:

“There is a vitality, a life force, an energy, a quickening, that is translated through you into action, and because there is only one of you in all time, this expression is unique.”

It is our responsibility as children of the universe to let ourselves shine.  When we get bogged down in other people’s drama about us and in our own hopes and expectations for ourselves we lose sight of what we were put here to do. We may not know what is best for because we do not always see our way clearly through other people’s garbage.  And, perhaps the gifts we are given are not to benefit us…to pay for new cars, expensive toys and houses larger than we need.  Perhaps we all need to look at our hiding, our denial,  and at how we spend our time and energy and try to determine if that is really what our Higher Power intended for us.

Women have been taught for eons that we are to be submissive, silent and non-confrontational in order to have worth and be seen as “good”.  While I would not label myself as a feminist, it would be difficult for any intelligent woman – or man for that manner – to look at our culture and not admit to all  the ways in which the characteristics of a man: confident, aggressive, competitive, business minded – are valued over those of a woman: communicative, mothering, less assertive, negotiator, feeling oriented, intuitive. And when a woman crosses over into the realm of the “male” she is seen as a bitch, a rebel, difficult, arrogant, slutty and more.  No wonder I crumpled into a heap when I was challenged that evening about my right to be an authority – I was essentially being called all the dirty names in the book just because I stepped into my place of power. And this wasn’t the first time I had been silenced by someone’s expectations about what my role should have been….this was a long drawn out pattern that I was determined to put an end to.

I have spent much of my life trying to figure out how to walk a path of knowing and socially and self-enforced enforced submissiveness in order to not look “stuck up” as that adolescent monster would say.  I have dumbed myself down, shrugged off compliments, failed to use the strength and power I possessed and often chose to not act on the gifts I have been given in an effort to be acceptable. Yet my kids, and now my young, predominantly male staff, see me as a tough rebel who will take on anyone/anything in the interest of my moral code.  There is a contradiction in my life that makes me uncomfortable and makes it so that I cannot easily fully embody either aspect.

Recently I watched the move NINE in which Daniel Day-Lewis’s character director Guido Contini struggles with writing a movie script because he is uncertain which aspect of himself seen through the eyes of the women who “love” him is actually him. The positive and negative aspects of each of his persona’s are shown and he agonizes over how much damage he does in his private life while pretending to be the self confident, wise Director everyone expects to see.  He is anxious, unsettled and despondent and retreats to be away from everyone’s expectations. He is discovered in his personal exile by Lilli, a long time friend played by Dame Judy Denche. He tells her that he cannot possibly go back to that life and the only story he has to tell is one of a humble man trying to win back the love of his life.

Lilli says: “There isn’t a single person passing by who hasn’t been touched in some way by one of your movies.  That’s your gift. That’s what you’ve been given. Use it.  Just use it with some grace for Christ’s sake”.

Like Guido so many of us, myself included,  get caught up in the expectations – real or perceived – of the people or society around us, and we neglect our  gifts because of our own doubt and the way we want people to see us. We hide, we play dumb, we tell ourselves that our inner voice is EGO and not to be trusted.  We lack the self confidence to pursue our dreams not because we are afraid that we are not good enough, but because we are afraid of what may happen if we are. We are afraid that if we become everything we were meant to be, say everything we need to say and do everything we know we were meant to do – we will be seen as arrogant, stuck up and ego-centric.

But what if exactly the opposite were true?  What if, like my teacher said to me, our arrogance lies only in our decision that WE think we know better than GOD what to do with our lives?  What if, as Martha Graham stated, we choose NOT to express our uniqueness and therefore it is lost?  What if there is really an intention for us here on this green world and the butterfly effect is so true that in our choosing NO, we impact the entire world negatively instead of positively?

In the end, we simply need to remember what Lilli says to Guido….” that’s your gift. That’s what you’ve been given. Use it.  Just use it with some grace for Christ’s sake”.

Resistance is futile November 5, 2010

One of my favorite bad guy lines of all time is “ Resistance is Futile “ courtesy of  The Borg from Star Trek Next Generation.  The Borg were a collective entity that assimilated their victims in an attempt to reach a sort of computerized all–knowing perfection.  Their standard “resistance is futile” line was the last thing they said to their victims to state that there was no escape from their fate….that struggling only made the inevitable more difficult.

Recently I faced situation at work where I stood the very real potential for losing my job because I stood up to an injustice.  As I waited through the weekend full of anxiety; stomach churning and a constant tension headache from my tight shoulders I began to think about the Borg statement in a slightly different light then they may have meant.  There was nothing I could have done about the situation I found myself in other than to have kept quiet (which was simply not possible if you know me at all!). I did what I needed to do, I was not antagonistic, I spoke my truth and now simply need to face the result of my actions. Resistance to the proverbial shit hitting the fan is indeed futile. And, my relaxing about it might indeed give me the agility and strength to dodge it! My inner struggle with the perceived difficulty of the impending meeting was ruining my weekend. I could not change a single thing about what was going to happen….I could only change my own end of it and let it go.  If I stopped holding myself in such a place of resistance – the fear of the unknown – what would I begin to open up to as a possibility?  And certainly, walking into that meeting tense and agitated wasn’t going to do me any good – I knew I was in the right, but I didn’t need to be all wound up about it or I was going to be the one who lost it.

Relaxing into the struggle looked at in a different light makes me think about learning to swim – something that is still  an anxiety filled sport for me.  Since we owned a boat growing up my parents were determined that I would know how to swim. To make a long story short, their well intended efforts, and those of the swim instructors who employed a sink or swim attitude, did not lead me to a lifelong love of the activity. But learning does shed some light onto the Borg philosophy as well. I was taught that my swimming safety net is to float on my back. In order to float, I must stop flailing about….the more I struggle, the more likely I will end up under water. How often do we accomplish our goals by running around panicking about all the things that might happen?  How much more successful are we when we approach the events in our lives with a calmness that leaves room for positive outcome? How often do we struggle within our own safety net?

The difference between my use of the Borg statement and theirs is that I believe that resistance is futile not because I believe we should give up, but rather so that we can see how and what we are resisting and decide if it is a necessary use of our energy. In between resignation and resistance is curiosity. Examining our places of resistance, fear, defensiveness and avoidance gives us the opportunity to shed light into the darkness of our scary places.  Curiosity steps us away from our habitual actions/reactions  and gives us an opportunity for a new experience. As we pause and look at the path we always take, the actions we don’t even think about, the words that we use without analyzing their future, we become freer in our lives.

We all have a tendency to struggle with a myriad of things that really don’t require all that energy. Usually this struggle is prompted by fear. We are uncomfortable with not-knowing, we are worried we will get hurt, we don’t want to let our guard down, we are preparing for the worst.  We are focused on what MIGHT happen or what HAS happened instead of being present in the moment and gaining strength in that. When we hold ourselves too tightly we hold ourselves back from accomplishing our goals, speaking/acting on our truth and from fully loving and being loved.

Pema Chodron writes:

“… the next time you lose heart and you can’t bear to experience what you are feeling, you might recall this instruction: change the way you see it and lean in…Instead of blaming our discomfort on outer circumstances or on our own weakness, we can choose to stay present and awake to our experience, not rejecting it, not grasping it, not buying the stories that we relentlessly tell ourselves. This is priceless advice that addresses the true cause of suffering – yours, mine, and that of all living beings.” (Excerpted from “Taking the Leap”, by Pema Chodrön)

I often think of Pema’s instruction to  “lean in”.  I most easily see resistance as it manifests in my own body. In yoga as we are engaged in a challenging position – especially if it is a new one to me, I find that my muscles fight every movement. They are bunched up and tight even as I try to stretch them in ways I KNOW they are going to like. My yoga teacher speaks of how we hold stories in our body and how the physical pain and resistance we feel is a piece of our personal story that got lodged in that particular place. He tells us to send light and love to those uncomfortable places – to breathe into the resistance in order to open it up to receive love, compassion and gratitude.   I notice that I am often able to tell my muscles and my brain to let go of the tight grip as I take deep breaths and melt into the discomfort. As I stop resisting, as I stop seeing the pain as bad my body opens and I am able to go more deeply into the pose.  In yoga and in life, as I stop resisting, I open myself up to a deeper experience that transcends my fear of inadequacy, of “what if” and “I can’t and begins to heal those long-held tensions in my body and soul.

I don’t know all of causes the knots of pain and anxiety that my body holds onto.  And I don’t understand how one day they are gone and the next they are magically back.  But I do try to regularly practice the concept of not struggling with the struggle as my friend Carole puts it.  Life is hard, hard things come up, we have hurt places and scared places and resistance within us.  Okay.  So are we going to move forward by fighting; by flailing around and resisting or  by opening to a level of curiosity and seeing what happens when we lean in just a bit.

I wish I could say that knowledge of my resistance to so many aspects of life lessened it dramatically – but no.  Each day in a multitude of ways I am reminded how much I hold myself back. I deal with a chronic anxiety disorder that is controllable with great care and attention without drugs. Keywords…CARE and ATTENTION. A person – or at least me – with an anxiety disorder is exactly like the metaphor of learning to float on ….you must stop flailing around in order to keep floating. The more I resist being anxious/stressed/overtired, the worse it gets. And not only does the anxiety get worse, my brain fills up with negative stories about all the things I SHOULD be capable of, all the way’s I am not successful/beautiful/smart instead of just listening to the tiny voice in me that says “I need a time out…and some chocolate…and a little less business please”.

There are many more ways I hold myself too tightly emotionally and physically. Every morning I bend over to dry my hair upside down so that it doesn’t matt to my head like glue as it dries.  And every morning, no matter how limber or stiff I am feeling I only bend part of the way over. I hold back, for no particular reason. Each time I realize this I let go, and immediately move into a place of greater ease and relaxation as I stop trying to hold myself  Amazingly, the pain in my body eases!  Each time I sit down at my computer to write I find a million other things to do besides write and the voices in my head go on and on about how worthless it is.  I sit down with my cup of tea and BREATHE through the anxiety and resistance. Each time I approach the keyboard, I swear I am going to quit  and then do it anyway.  When I am heartsick about the perceived indifference of my  partner Neil,  I take a step back and open my heart….is it really intentional neglect or  am I afraid  that I will be left or that I am not enough?  As I step into that feeling of fear, and watch how instead of being confrontational being present chances the situation for both of us, we both open deeper and more fully to our relationship.:

So here is a simple experiment to just see how you may be holding yourself too tightly physically:

As you sit here reading this RELAX.

Sure, you think you are relaxed now, but are you? Are you holding your stomach tight?  How about the muscles in your jaw?  Are your shoulders up at your ears as you sit at your computer?  Can you breathe into those places and just let them drop? What are you gaining by holding yourself so tightly?  What feelings come up when you let go?  And more importantly, what are YOU really resisting?

The Borg kind of had it right….and even the concept of assimilating into the collective is not so far off.  It is just that the entity you become a part of when you cease resistance is not evil or of a continuous questing for betterment. It a place of soul filled radiant beauty, of right action for the right reasons. Its physical image is not that of the linear cube of the Borg, but of an open hand, not grasping and ready to receive. It is not about striving, but about being open to what is coming at you with a sense of curiosity. We can continue to hold ourselves back, but on the warrior path it is imperative that we are paying attention so that we may choose our actions and responses wisely. We must not shut ourselves off or ignore the triggers in our bodies, or in the messages our deepest selves send us.  And so, as we walk this path of right action and of soul-filled living, resistance is indeed futile.

Living out loud August 9, 2010

“If you ask me what I came into this world to do,

I will tell you: I came to live out loud.”

Emile Zola

Anyone who knows me would probably tell you I am outgoing, honest, easy to talk to and likely to say EXACTLY what is on my mind no matter how politically incorrect it may be. I have heard “tell us what you REALLY think, Robyn” more times than I can count. I have had the Zola quote posted by my bed for years and have always believed that it was my spiritual responsibility to not “hide my light under a bushel” so to speak. And then I got cancer.

Being the only girl working the male dominated hardgoods department at a ski shop was a source of pride for me, and guaranteed me immediate recognition and, dare I say, popularity within the local ski community. As my mastectomy surgery date came closer, the owners of my workplace decided they wanted to help with the impending medical bills by hosting an auction. Would I be okay with that?  I was amazed and touched that they cared so much. An email was sent to all the ski related sales reps in the Northwestern territory asking if they wanted to donate something because “Robyn has breast cancer”. Now, there are a ton of reps in the Seattle area, most of whom I had a personal connection with, and donations POURED in.  As they stopped by the store to make sure I was okay I realized I had not thought this through very well in terms of my own privacy. More than one person had a complete melt-down in disbelief and sorrow over my diagnosis while talking to me. I was completely overwhelmed by everyone’s generosity and their personal emotions and of course I felt like I should answer their heartfelt questions. Shortly afterwards an email was sent inviting people to the event.  2,000+ people were the recipients of that email. AND it was posted on the website.  AND the staff, in the interest of being helpful in getting donations, told EVERY customer. So the days leading up to my surgery, when I was most insecure and afraid, I spent every day talking to people I didn’t really know about my diagnosis and impending treatment.

I took two weeks off work and returned a week before the benefit. My customers came in to see how I was doing. People sought me out to talk to me. More than a hundred people came to the event and bought auction items or donated cash. On the sales floor eyes kept sliding from my face to my chest and back up again as people tried to process what they knew I had been through and the fact that I didn’t look any different. I was so self conscious and afraid of looking weird…I wore big puffy down vests so you couldn’t see my chest and must have checked myself in the bathroom a million times a day to make sure that nothing had slid out of place. I was exhausted, took multiple naps in the lunchroom every day to just make it through the day and cried all the way home every day.  I was traumatized by my sudden diagnosis and treatment – which I had not even begun to process – yet had to talk to people I barely knew about what I was going through.

Because of having the reputation for being open, honest and outspoken people asked me  many questions ranging from the benign “what type of cancer do you have?” and  “Are you going to lose your hair?”  to the more personal “So are you just flat on that side?”, “When are you getting a boob job?”  “What do you stuff your bra with so that it looks like you have two?” and on to the one we all wanted an answer to “Why you?”. Each time I had to talk about cancer when I was supposed to be doing my job, I took a deep breath and gave them an honest answer. There were times when the questions were flat out rude and a brutal invasion of privacy but more often they were just annoying in their repetition. I thought if I spent my life being approachable, now was not the time to retreat. I saw this as a “teachable moment” for us all.  If people felt they could ask me a question they deserved the best answer I could give them in that moment. Who knew if they were going to have a mother, sister, or lover with breast cancer. Maybe the fact that they had spoken to me would make a difference some time down the road. I think the fact that I did not fit the image of breast cancer patient – I was the wrong age with no risk factors and was an athlete – really shifted people’s perspective about this disease and made them realize that it could affect any of us. At least that is my hope, and that is why I kept talking even when I just wanted to hide.

Gandhi said “Be the change that you want to see”. Being “cancer girl” was incredibly challenging as I was having enough difficulty dealing with my own diagnosis in addition to educating others or helping them cope with it too. I could have stopped at any point – I could have deflected the questions, not been so much of an open book, or shut down the conversations.  But what do any of us stand to learn from closing the doors on education, caring and understanding? A cure for a disease, compassion for people in crisis, acceptance of those that are different, or an end to the terrible acts of violence going on in the world begin with each one of us taking a moment to be a voice for those who do not have one. Using our personal experience, passion and ability to speak up about the things we believe in is the only way we are going to create a better tomorrow. It is our responsibility as children of the universe/God to stand up for the things that matter to us. No one is going to change the world except us.

Nearly immediately following the end of my treatment  I became a local and national Reach to Recovery volunteer with the American Cancer Society. I talk to women of similar age and breast cancer diagnosis about what is REALLY going on with them – one survivor to another. Recently I started publishing my writing about my struggles around body image and what I was doing to cope with the stress, fear and emotions that come up in being a survivor. Many  people tell me that even though my experience may not be the same as their own, reading about my challenges created greater understanding and the ability to look within at ways that similar issues have affected them.

I am glad that my own experience can serve my community in helping them live a more full and aware life. I feel that I am making this disease work FOR me, instead of wallowing in all the ways that it changed my life without my permission. I hope I can help other sister survivors feel less alone and to see their own inner strength and beauty. Each day I talk to people about cancer I grow more committed to the work of sharing my successes and struggles so that people will be educated and those dealing with similar challenges will know they do not fight this battle alone.  Each time I write about my own thoughts and struggles I hope that someone who needs the push, or the hug, feels that coming from me and is able to take the next step towards being their best self – cancer survivor or not. I live out loud not just for me, or for other survivors, but also so that others will know that they are supported in speaking up, for living fully, and for deeply committing to changing the world into a healthy, compassionate and beautiful place.

Fate, God, or whatever you want to call it, took me – a person completely committed to living out loud and gave me the ability to be a friendly, open voice to others who are struggling in private. I have become an advocate for the women who are also survivors and do not have the support or resources that I have had. I am the person they can  ask personal questions of knowing that I have been there and done that. (And gotten the t-shirt!)  I have put a young, athletic face on a disease that primary strikes older women, so that awareness in both genders and all ages has substantially increased. I have been a light for people who may not have had cancer but have faced similar emotional challenges in order for them to know that there is a way out of the darkness. I hope I have also been a role model to my kids about how to live a genuine life – to not believe that you are alone in your struggles, to not be ashamed of the challenges you face and to be watching for the opportunities to be of service when we least may want, or expect them. They are the next wave – it is my responsibility to teach them how to “be the change”.

Cancer handed me a lot of opportunities to “walk the talk”.  Many times I wanted to become a hermit, but as I remind other people they are not alone, so I am reminded that I am not either. I am nourished as much as I give, maybe more so, by the sisterhood this disease welcomed me into. I am changing the world with each word I write, each conversation I have, with each hug I give. By utilizing our gifts,we  heal not only our planet and our human family also ourselves. I challenge all of you that read this to look deep within at what beliefs you hold passionate and think about how you can bring this to the surface in order to create a better world. Can you bring your challenges to the table to let your experience show someone that they are not alone?  Can you use your resources to help another persons’ path become smoother?  Can you be a light for someone else? Can you speak up for those that cannot? Can you give a hug to someone that is in need?  If you are not fully you – if you are not living out loud – who will?

(Thank you to Michael Franti and Spearhead and all the other social activist artists for being such an inspiration in showing us how to use the tools we have to change the world. NAMASTE)