What Our Kids Really Need January 13, 2012

I was recently talking about my (adult) kids to a near stranger, “They are amazing people.  I am so proud of who they are.  I love hanging out with them”.  She was amazed and said that it was great to hear a parent say such nice things about their kids.  It struck me odd that this should be unique – even given that my kids are in the very difficult period of finding their balance between childhood and responsibility as they enter/leave college. They are both deeply spiritual, compassionate people who do the best they can in often challenging situations – we don’t always see eye to eye, but even if they weren’t mine, they would still be my favorite people.

Later I was talking about a management position I held where nearly all of my staff were my kids age  – and how much I loved working with them even though it was often challenging.  Again, this was received with amazement.  I don’t understand why; who wouldn’t want to work with kids who see the humor in a customer named Longe Dong (SERIOUSLY!),  or who required a chalkboard in the bathroom so they could leave doodles for each other? The joy far outweighed the extra work, and the effort of giving them the opportunity will remain with them their whole lives.

Yet, despite our own efforts,  some young people’s lives are easier than others. A friend of mine recently celebrated her magical daughter with an amazing blog post, while another friend has retreated into silence as her adult son is incarcerated for a series of bad choices.  Both are amazing parents, who did everything they could to give their kids the resources and support they needed on their difficult paths to growing up.  The outcome of their efforts will likely be vastly different.

Being young is hard. Loving young people through it all is challenging.  They are our future – and as such deserve our best efforts.

I have not been the parent I wanted to be – we were poor and they witnessed more bad situations than I wanted them to know existed. We were homeless. We were sometimes hungry and often did without things their friends had.  They have known the pain of racism and classism. They have suffered irretrievable losses from a father who is challenged by his role as a parent.  I grieve deeply for all I wished for them that I could not provide or fix.  And yet, they not only survived – but thrived.

I often wonder how they are so wonderful despite all that I did wrong according to psychologists and talk show hosts.  Though there is much they could discuss in therapy, I did much right – the most important things not dependant on money, resources or material goods.  Then and now, I fiercely support and defend their right to carve their own path in the world.  They know, beyond the shadow of a doubt that I have their back, and that I will kick their ass thoroughly if they are being stupid. They know I love them no matter who they are or the difficulties they face. I require them to have integrity, to be honest and compassionate and to remember that the person they are dealing with could be them.  They are free to have whatever hair, tattoos, clothing, music or political tastes hit them in the moment although I do take photos for blackmail later! I do not judge who they love as long as they are treated well. We talk about important and trivial things – nearly every day. My son and I go out for lunch together often to catch up. We have deep and profound connection and respect for one another. I have always thought that maybe they have as much to teach ME as I have to teach them.

I have also had the good fortune to mentor many young people over the years  - some of whom had  trouble  as they fumbled their way through the world.  Many of them suffered abuse, taunting and ostracism from their peers and family for all the ways they were different.  Some of them just needed the big love and strong shoulder of a person who held them to being their best self. I held them all to the same standards I held my own children to, and I was gifted back enduring love and respect.  A hyperactive kid who needed his first job was a handful, but he made me laugh and someday he will have my job. Another young man was quiet and shy, but as I gave him opportunities he gained confidence. He became the one everyone looks up to – the big brother everyone wanted to impress and be like. But another young man took his life when he could not measure up to the standards set for him by others.  I will never be free of the anguish of finding out that he didn’t come home because my love could not erase the pain of a box he couldn’t fit into .

We have gotten too involved in thinking that the “things” are what make us good parents/adults. We worry that if we get a divorce, made a bad decision or fail to provide them with the right opportunities, tools or toys they will we will harm  our children.  Or, we pay for expensive school and buy expensive dinners thinking that matter. Too frequently we neglect the very things that would make a difference for them – to show up and listen and to respect who they are.

Young people look to us for leadership and watch how we deal with our own experiences (good or bad) to learn how to be adults.  They don’t have a lot of tolerance for cover-up games from their role models, they will just find new ones . Who do you want them to learn from? They are smart, they see our mistakes and call bullshit when we expect things out of them that we neglect in ourselves.  Perhaps that is what scares us as adults – they see us for who we are, despite who we project.

Our youth deserve the same attention to relationship that we would give a spouse – just because they are kids does not diminish the level of care we should take in our interactions. They are magic – the younger they are the closer they are to God, and the older they are the more they can see through our thinly veiled façade.  They are our future…what do we want it to look like?

We can make a lot of mistakes as parents and mentors without losing their love and respect. Being a “good parent” is simply a matter of showing up and being real. Our youth don’t need the “right” anything – they need us.  They need us to be honest, to communicate and to support their best selves no matter what.  It might not save them all – each of us comes into this world with karma that often is counter to all other influences – but we can make a difference by making the effort.

Be The Change Part 2 – What We Should Have Learned From Occupy Wall Street December 30, 2011

Occupy Wall Street protests are fading into the past (for better or worse) as tent cities have been shut down and the nations short attention span has moved on to something else.  Whether or not OWS accomplished any of its goals in impacting the way that big business is run and governed in the US, it cannot be taken lightly that this was a tremendous opportunity for the “regular citizens” to proclaim their outrage at the freedoms and benefits a small portion of the population receives.  But OWS’s lack of leadership seemed to be its downfall and the teachable moment never really happened while  the media  focused on police pepper-spraying protesters , fringe group troublemakers and the dollar cost of our freedom of speech.

This was an opportunity not  only for us to voice our disillusionment, but to make small changes that, when undertaken by people en mass, make big differences in our lives, in our communities and in our economy.

We will not change the world without first changing how we are in connection to it.

Here is my list of  10 things we can each do that seem small, but do make a difference: 

1. MOVE YOUR MONEY TO A CREDIT UNION   November 5, 2011 was National Bank Transfer Day…a deadline by which consumers were encouraged to leave for-profit banks and move their money to credit unions.  In September credit union membership grew by 227,000; October by 214,00 and in the first week of November alone, by  40,000 new members.  Now if all of these people ONLY moved $100 each….which I am sure is far below average….well, that means that is over $48MILLION dollars moved from profit banks to local non-profits.  It may have not made a huge dent, but it made a dent.  And it created awareness. But more importantly, it brought your money back to the community – to smaller banks who invest in their communities.  It is easy to do, and don’t forget to move loans, mortgages and credit cards too.
2.  SHOP LOCALLY AND THINK SMALL  Stay out of chain stores as much as possible and shop local, small businesses.  In most cases you will not pay more, and really – even if it costs you a few dollars more, aren’t you glad you dealt with the OWNER???  Most small businesses feature local products so you are making a double impact on the lives of the people in your community.  Find your farmers market.  Use a non-chain store mechanic.  Eat at the local burger joint if you have to have fast food.
3.  GET OUT  Go outside and play. Go for a walk.  Take a hike. Ski.  Get yourself into the outdoors.  You don’t know what is worth saving until you have an experience with it.  Pick up garbage.  Join a trail cleanup crew.  Take your dog to the dog park. When you go for a walk, you meet neighbors, discover interesting new coffee shops, trails and flora and fauna all while you get exercise. People who spend time outdoors are the ones who work to protect it.
4.  TURN OFF YOUR TV  Television tricks us into believing that the lives of spoiled kids from Jersey are important and that we must spend $200 on high heels to be beautiful.  Mainstream media is for-profit, meaning that what they put out there for news/entertainment must be profitable. That means they are trying to get you to believe and to buy. You may think you are immune, but you are not….commercials are designed to subliminally affect us, violence dulls us and images of “beauty” demean us.  Nearly all children’s media is full-fledged brainwashing of our newest consumers with splashy graphics, coordinating clothing lines and stuffed toys.  Purse alternate media sources, listen to NPR, put down the remote and experience your community in person.
5. START A GARDEN It doesn’t have to be big, nor do you need skill, tools or experience.  A pot, dirt and a plant/seeds is all you need.  This is especially important if you have kids.  Growing things  outdoors puts us in tune with the weather, pests and the necessity of care and attention – all of which we forget when out world is so pre-packaged/protected. It is only by having a garden that the reality of global weather pattern changes sink in – I now plant the bulk of my garden almost 2 months later than I did 20 years ago.  And it is still too cold for some plants.  I would never have noticed otherwise except to complain about “bad summers”.
6.  STOP NEEDLESS SPENDING  Stop the consumer debt.  Pay off your credit cards.  Don’t buy the “thing” just because it is a dollar off on sale unless you really need the “thing”.  Stop habitual spending, stop emotional spending.  Pay attention to where your money goes – track it.  Whether you have a lot of it or a little you will be surprised at where it goes.  Cancel catalog subscriptions so that merchants are not telling you what you need and reminding you every month  with sales flyers  on already overpriced items.  You will be more satisfied with what you have if someone is not always reminding you what you don’t have.
7.  VOICE YOUR OPINION  You have a voice – use it.  If a company is treating you unfairly, tell them.  Take your business elsewhere.  Write a letter to the newspaper or to a ratings website or local news agency consumer group.  Don’t blow it off for the next guy to get ripped off or offered bad service.  You are not at their mercy. Vote – or don’t vote, but be politically active not neglectful or lazy.
8. VOLUNTEER You and your talents are needed.  It does not always require a big time commitment – I am a 3 year volunteer for a program that needs me only an hour or two a month – and even that is over the phone!  Volunteering gets you out into the community providing valuable perspective on your own life.  As the economy has suffered, many non-profit organizations have had serious declines in funding and need volunteers more than ever.  Pick your passion and put it to work. People need you.
9.  REDUCE, REUSE,RECYCLE  Ride the bus and get to know your neighbors and come home with crazy stories like I do!  Consolidate chores needing driving, carpool when you can, and take mass transit as often as possible.  Better for the environment and less dollars in the oil company’s pockets.  Don’t waste resources – make sure to recycle, buy in bulk, carry your own grocery bags.  Shrink the size of your garbage can and grow the size of your recycle.  Carry your own water bottle, coffee cup or silverware for takeout food.
10.  BELIEVE IN WHAT IS POSSIBLE  NOT WHAT IS IMPOSSIBLE We become negative when we are overwhelmed and there is much to overwhelm us politically, environmentally and financially.  But manifestation works by focusing on what you don’t want to happen as well as what you do want to happen.  Spend your energy on creating the future you want, step by step.  It is a marathon, not a sprint and your efforts may look small and insignificant, but  I assure you that everything you do with intention is anything but insignificant.

(This post was largely inspired by the book “Small Wonder” by Barbara Kingsolver…..a terrific collections of essays I suggest you find at your local independent bookstore  or through  The Elliot Bay Book Company  which ships!!)

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

Speech given to Cancer Resource Network/American Cancer Society, September 2011 September 27, 2011

Hello – My name is Robyn Lynn. I am a writer, grad student, mom and breast cancer survivor. Not very long ago was I was in the middle of the most difficult thing I could ever imagine going through. I was uncertain, scared and full of questions and someone stepped forward and shared their story. In hearing her words, I took courage, gained hope and knew that I was understood. This is my story.

September 19, 2008 was a day that I will never forget.

I was 39 years old, an avid skier and golfer, ran 15 miles or so a week and had been backpacking at a hundred miles most summers. I had a 19 year old daughter, a 16 year old son and a boyfriend of two years. I was getting my life together and discovering who I was as my children grew to adulthood and needed less of me.

I worked in a ski shop and had a bump on my floating rib, low on the right side of my chest, which I mentioned to my Naturopath at my annual July exam. To say she was concerned would be an understatement. I thought it was weird – clearly the bump was from smashing into something at work – a fairly normal occurrence for the only girl working in a warehouse and shop . It was nowhere near my boob. She insisted on a mammogram and ultrasound immediately. I had never seen her so adamant about anything

Even though my doctor said the tests were urgent, it took a couple weeks to get scheduled. At the clinic, I was shaking and anxious and wouldn’t let my boyfriend and parents out of my sight. It was my first mammogram and the technicians turned out to be customers of mine. We talked about skis to put me at ease. Then it was on to another room  for the ultrasound, but the technician focused on my chest, not where the bump was. I didn’t understand why but I would.

I will never forget returning to the mammogram room and seeing the films up on the computer screen. There was my breast – covered in beautiful tiny little constellations of stars – some so dense you could no longer see individual specks. It took my breath away. I knew it was not supposed to look like that. The nurses were very sweet, they talked about calcifications being normal and that most likely that is all it is. We would do a biopsy to make sure, but since I had no risk factors there was” little to be concerned about”. I was stunned.

I tell people it is slow to get diagnosed and once you are, the wheel spins out of control. It took more time to get scheduled for the next test and August rolled on by. I remember nothing of the biopsy in September, which tells me something about my stress level. I had no idea what was going to happen.  I didn’t want to research online.  There was no one to ask questions of or talk to about my fears.

The biopsy was on Monday and the results were supposed to be back on Wednesday – but no call. Didn’t hear on Thursday either. The waiting was horrendous.  As the end of Friday crept up, I called nurse asking for any information before the weekend came. My phone was in my pocket and around  6 it rang.  Heart in my throat, I waved my boyfriend (also an employee) into the backroom with me as I recognized my doctors phone number. My hand shook as I answered. She wasted no time. “I am sorry to tell you this but you have Ductal Carcinoma Insitu. It is non-invasive, but extensive. Your only option is a mastectomy.” There were more words but I didn’t hear them. I fell to the floor. The air left my body. I thought I would faint. I never thought of myself as being that dramatic, but when told you are going to lose a body part, that the rest of your body collapses in sympathy.

How could this be? How could I – an athlete, a health nut, a mom with no risk factors, have cancer?  Why didn’t I have a lump or something that would have warned me?  How could there be so much of it? Am I going to die of this? WHY ME?

I gave myself a month to come to grips with it, something at the time I thought was possible. Come to grips with losing a part of you? Come to grips with having Cancer? Come to grips with who knows what horrible treatments? Now I know – there is way to absorb it, to let it sink in, to come to grips with it. It doesn’t ever seem real. You don’t get to process it. You never return to normal, or the way things used to be. It is often a nightmare, but more often just IS. You do what you need to do to save your life and as I found out, in the end you re-discover what your life really is.

I had loads of support — the pink ribbon industry had done its job well in educating the masses, but unfortunately no one was my age. I had tons of questions but no one to ask. I didn’t want to sit in a room of 60 year olds, as supportive as they may be.  I wanted someone to talk to me about reconstruction and how bad their scars were. I wanted to know how they talked about cancer when they dated.  How was I going to look? Would I ever wear a bathing suit again? Was I going to ever be the athlete I was? What does this all mean and who am I now??

I knew no one my age that had cancer except my cousin Jody. But hers wasn’t going well. She had also originally been diagnosed with DCIS and had a “breast conserving” lumpectomy thinking that would be good enough and wouldn’t leave her looking strange.  But it wasn’t. Cancer returned in her organs and eventually her brain. At the time I was diagnosed she was undergoing a second round of chemo. She was a single mom my age with two daughters just a little younger than my own kids. We weren’t related by blood, but had grown up together. We didn’t talk much during our ordeals, but she told my mom to tell me to do everything I could do and don’t stop. On my two year anniversary I spoke at her funeral.

Cancer took away my choices. That was what was so disempowering. I did nothing to “get this” – in fact, I had done everything right. I ate organic and had been vegetarian for half my life. I had no risk factors. I felt punished for something I had not done. And lucky me, because the cancer I had didn’t usually get this bad, they didn’t really know what to expect and there wasn’t a clear protocol for treatment. I was an anomaly in unchartered territory and we were hoping for the best.

The only thing anyone could tell me is was what wasn’t a problem – the original bump that got this whole thing started. It turned out to be nothing and completely disappeared the moment I was diagnosed. I tell people it was a message from my fairy godmother ….my angels were watching out for me. If I had not found it right then, it would have killed me by the time I did. That is all there is to it.

I had surgery on October 22. Luckily the cancer really was non-invasive and the lymph nodes they took were clear. But the whole breast was full of cancer and I had less than 1mm of clean margin. I suffered horrible, painful and permanent neuropathy from surgery, my body rejected the sutures leaving a gaping hole in my chest for a month and I had permanent scaring from third degree burns that began on day 10 of 36 radiation treatments. Good thing no one mentioned any of this as a possibility because I would never have thought I could handle it.  I was glad to be alive, but the cost was tremendous. Everything was difficult, new, scary and painful. My life was completely different than I ever would have anticipated and I had no idea of what to expect of my future.

About this time I received a call from I received a phone called from a volunteer for an American Cancer Society program called Reach To Recovery. A Patient Navigator at the hospital where I had surgery had asked me (while I was drugged up) if I was interested in talking to another breast cancer patent and I had said yes (what else would I have said at the time??). I had no idea what life was going to be like in another month or two or six, but I desperately wanted to talk to someone my own age that I didn’t have to be optimistic with.  Someone that just knew what this was like without being told.

The phone call was to change my life. I remember where I was when I got the voicemail she called. I remember where I was when I called her back. I remember sitting on the floor crying because she understood. Really understood. Michelle was my age…with a lot of similar issues She answered my questions about relationship stuff, treatment and reconstruction with deep honesty. She shared herself – very personal, intimate and real. She was the only person I ever saw, or talked to, that was my age and a survivor. She made suggestions, talked about her own reconstruction (which she loved) and scars (which didn’t show) and about how one man in her life didn’t handled cancer  (and left) well and the next on did (and they got married). Talking to her made a huge difference to me. She helped me see what was possible for me at the end of all this. I wasn’t alone anymore.  I knew immediately I wanted to make that difference for someone else.

I had no idea until cancer how strong I was. I had no idea who I was. Being told you have a life threatening disease you had no idea you had is terrifying but  doing what you need to do to get rid of it is the easiest decision to make in the world. The journey is often unbearably hard, and lonely. But my story is not horribly unique and that is why I tell it here in such detail.  It is the story of many women who are diagnosed with breast cancer. In this most private and frightening time, we need to know we are not alone – we need to hear that in the end, we will have received far more because of cancer than we have lost.

Because of Michelle , I became a Reach To Recovery volunteer  for Snohomish County  and now am the Reach Coordinator for my region. I also am part of an small call list of  volunteers who contact  women in remote areas with no other resources or for whom their local division had no match. As Reach Volunteers we provide direct and immediate support to women with a breast cancer diagnosis. I cannot stress to you enough how important this is: DIRECT AND IMMEDIATE SUPPORT in what seems to be the worst time of our lives. At so many moments in my own diagnosis, treatment and survivorship I could have used a phone call.  When it came, I was eternally grateful.  I am now that phone call for someone else.

Reach Volunteers are matched as closely as possible in age and diagnosis to the women we call, providing connection, resources and empathy that cannot be gotten elsewhere. Depending on when the patient is provided with information about the service, support can come quickly – often even prior to surgery or treatment. Even when it comes later, we still talk about long term physical and emotional self-care as women embark on the next phase of their lives as survivors. We answer questions about our personal stories and treatment, give encouragement and listen to theirs.  We have access to resources about treatment and reconstruction options, financial assistances, rides, and more.

I generally speak to women who are between the ages of 30 – 50. A Reach call for me starts off something like this:

“Hi, my name is Robyn and I am a Reach to Recovery volunteer with The American Cancer Society. I understand that you have been recently diagnosed and wanted to speak to someone that was you age about what you are going through – and that would be ME! You can ask me anything, we can talk about anything, I am here to be that been-there-done-that-person. Nothing is off limits. How ARE you????”

The conversation evolves from there. Sometimes they seemingly have had a list of questions they’ve waiting to ask someone. Sometimes they just need an ear to listen to how mad or scared or frustrated they are. Sometimes they cry, always we laugh. I can usually hear a cup of tea, a glass of wine or a can of beer being sipped. Often they are cooking dinner and I hear their family in the background or wait while they deal with a kids’ crisis. But I have been there too.

These women are UPS drivers, garbage truck drivers, business owners, dance teachers, sled-dog mushers, stay at home moms, firefighters.  They are active and have years and years ahead of them in their careers and families. They want to know how to move from disease to wholeness again.

We talk about diagnoses, how we don’t have time for this and frustrations over employers, friends, family and lovers. We always talk about treatment and meds  - always stressing that my story is my own and each woman is different.  In the first 5 minutes of every conversation we always talk about reconstruction. (Which I did not chose to have) .Always they ask how I am doing — timidly, with a question mark, and I can hear their relief through the phone when I say I am doing great. There is laughter and anger, cussing and tears as we talk about fears, love, energy, work, intimacy and families. And about WHY. After an hour – sometimes even more – I hang up after telling them I am completely available to them any time they need it –  in a day, a month or a year –  I am here. Sometimes they call out of the blue weeks later or I run into them at an event. These women are always relived to talk to someone that speaks their language, understands their issues and that they can be honest with. It makes a difference.

I will be honest – I am not always the stellar volunteer and sometimes it is hard to make those calls in the middle of my grad school work and fulltime day job. But when I hang up I ALWAYS feel like I just received a gift – not that I gave one – I RECEIVED one. Making a difference in the lives of women who are scared, tired, frustrated and worried,  MATTERS. I was them not very long ago. Because a volunteer stepped forward, I began to believe that there really was HOPE for a better life after cancer. When I was “trying to come to terms with it all” there was someone there to talk to. Because someone shared who they were with me, I became an inspiration to others.

I encourage you to be an inspiration. As you actively promote ACS patient services like the Reach To Recovery  you change lives. In some cases, connecting someone with a volunteer while they are in the crisis of finding out they make die, reminds them that they still have a life that is worth living.

Reach To Recovery is just one of the many patient specific programs ACS provides. My father is an in-hospital volunteer through the Cancer Resource Center at Providence Hospital in Everett, WA. The Resource Center (an American Cancer Society funded, staffed and trained center) at Providence Regional Cancer Center is an 800 sq ft. room on hospital premises complete with a fireplace and couches and an across the lobby coffee stand. The CRC provides information on all types of cancer and related treatment/medication information, newly diagnosed patient gift bags (hear love bags), wigs and prosthetic fittings, hand knit blankets and hats, scarves  and scarf tying classes, available to patients and their caregivers FOR FREE. Rides to and from treatment can be arranged and the Everett area ACS Road group has 25 + drivers.  Gas cards and hotel stays may be available. Cancer specific support groups and classes are also offered for minimal cost on everything from Body Image to Meditation and Yoga.

Dad spends a great deal of time in the chemo lounge at Providence Hospital in Everett, WA. As a prostate cancer survivor himself, and the father of a breast cancer survivor, he is in the unique position to speak on very personal and intimate terms with patients undergoing the two most common types of cancer. He knows the nurses in the lounge and spends hours each week, wandering through in case someone is in need. He spends much of his time listening to patients talk about what they are going through, providing support resources for patients and their families while they are undergoing treatment. I know for a fact that many of the patients he has spoken with continued their treatment plans because my dad was waiting for them to show up, and if they were late – well, they knew he would call them. Having someone to talk to is important to all of us but when you are afraid, sick or in pain, is especially important to have access to someone who has been there, and has come through the other side. We give hope.

My personal platform is that every woman with a breast cancer diagnosis needs to know that they have the ability to speak to someone who has been in their shoes. I would love to see women getting phone calls BEFORE their treatment, instead of after so they have someone to talk to about their fears from the beginning.  This means we need to develop close connections to doctors and hospitals so that we can get the word to newly diagnosed breast cancer patients that a Reach To Recovery volunteer is available.  And there needs to be a dramatic increase in volunteers like my Dad (although please don’t clone him – I don’t think I could handle it!).  We need survivors to be able to speak with patients at the hospitals while they are undergoing radiation or chemo, so everyone has access to a survivors message of hope and a better life despite cancer.

We must also increase the number of volunteers and actively seek out volunteers who are able to give of themselves. They need to know that it takes only a couple hours of time each month  to change a life – and they can do it their jammies! People think of volunteer work as a huge, rarely convenient,   long term time commitment. Reach is not like that. Most women would give be willing to talk to someone once every month or two if they knew how little it took to give so much. This is not a huge commitment but the result of our efforts is immeasurable.

We have a particular shortage of volunteers  who are outside of the median age of diagnosis. We need to recruit women in their 30’s and 40’s to share the unique concerns of young survivors. ACS needs to put a face on young breast cancer survivors who feel particularly alone in a culture that says cancer happens to your mom or your grandma not you.  My Dad speaks to an alarming number of young men with testicular cancer under the age of 25 who have NO ONE at all to speak to about their diagnosis. It is terrifying to be young and fighting for your life when you are already trying to grapple for control as an adult.  Young survivors concerns are unique and their approach to treatment and to long lives as survivors is also.

Anyone with a cancer diagnosis,  or who has journeyed the road of survivorship as a support person, is in great need  because of their unique understanding the  tremendous toll cancer takes on us all. Non-survivors can understand, but it the person who has really walked that path has more “street credibility” and immediately is able to understand and respond to a patient’s emotional needs.

We have an opportunity to make a huge impact as individuals. When it was determined that the bump on my chest that started it all was nothing, I saw it as a sign. I was saved for a reason, and I believe this strongly. I must make the most of my time here. Because I have walked a hard road, I have great empathy for others who must walk it. Because it is easy for me to speak out, I feel I must because so many have no voice. Because you have chosen to do the work you do for ACS, you must also feel similarly and I thank you for your service. Thank you for giving me, and so many others like me hope. Know that what you do matters to us profoundly.

It is often hard to feel our day to day jobs feed us no matter what they are. We burnout, get lax, forget stuff, and go about our work day a bit grudgingly. But I am here to tell you that WHAT YOU DO MATTERS at the deepest heart level to the women that receive a phone call from a volunteer like me. By your efforts to actively promote the support services of The American Cancer Society, patients are given hope. They are given time in which they feel the matter. They are able to share their concerns and their triumphs with someone who is in the unique position of knowing exactly how they feel. They have some of the weight of being a patient or a survivor alone in the world removed from them as they realize that people really do understand and care. They are, heard, recognized and buoyed up. They gain hope that their lives will not only continue, but they will be better despite cancer. What we do keeps people’s hearts alive in the most difficult moments of their lives. There is no greater gift to give.

Thank you for making a difference.

Honoring Survivorship June 11, 2011

Last weekend was Nation Cancer Survivors Day and this weekend was my hometown’s American Cancer Society Relay for Life fundraiser in which my dad and I were the survivor speakers. As I complete my tattoo and celebrate my acceptance to grad school, I find myself deep in thought about survivorship and what life after cancer means.

As a “cancer blogger” I am meeting women all over the world who are blogging about their experiences. They have opened my eyes to a side of breast cancer that is not about pink ribbons and gratefulness, but includes hard looks at the money machine of cancer fundraising and the social acceptability of the term “survivor”. While I may not necessarily agree with the opinions these strong women bloggers’ voice, I am in awe of what they have accomplished in spite of and BECAUSE they got cancer. Even when they are saying they don’t like the term “survivor” or they refuse to be defined by cancer, their cancer experience has lead them to write, be politically active and to teach the rest of us what they have learned.

Sarah, author of the book and blog titled “Being Sarah” recently wrote in her post “Show Me The Money” about the difficulties in celebrating survivorship when she has friends who very well may not make it which casused me to stop and think ….

“So how does someone with stage IV feel about being called a survivor, when they know that breast cancer will probably kill them?…. A friend sends me a link to a short film, the Pink Well Breast Cancer Survivor Dance Tribute, to celebrate National Cancer Survivors Day in Houston, Texas. Gloria Gaynor sings ‘I will survive’ whilst hundreds of women parade in pink wigs and tinsel, in sparkly pink dresses and feather boas, and smile and dance….

Meanwhile, the same friend is off for more scans for her metastatic breast cancer. She is 40 years old. Scans to see if her weekly chemotherapy treatments are having an effect, if she might get a period of stable disease. And for those of you who haven’t experienced intense medical treatment, we’re talking about every week of your life interrupted by at least one medical appointment, hours of sitting round waiting for treatment, then waiting for results from scans, living her life in three month chunks. It means visits to clinics where other patients hopefully ask her when she’s going to end her treatment. It means serious side effects and unexpected hospital stays due to complications with her heart and lungs. Feeling like a prisoner because her doctors say it’s not safe for her to fly right now, so she has to cancel a short break on a retreat, which is just what she could do with right now. And anyway, her treatment is so intense she can only think about taking a few days away at a time.

Do you think she would like a pink wig or a feather boa? Do you think she feels like dancing and celebrating survivorship?”

Another blogger I follow is Katie at Uneasy Pink who really challenges me to think about my definition of survivor in her post “Celebrating Survivorship”:

“I am conflicted about the term survivor. To me, a survivor is a person who has been utterly victimized, who is powerless and suffering at the hands of something or someone that is about as close to pure darkness as exists in the world. War. Holocaust. Childhood abuse. Things that happen completely beyond the control of the victim. Things that alter the path of a life altogether.

There are parallels to cancer here. I didn’t choose it and it did change my life forever. How is changes my life, on the other hand, is in large part up to me.

The big difference, as I see it, is that this “thing” that victimizes us is our own bodies. I question the wisdom of likening our own bodies to the Nazis or the Khmer Rouge. Strange to me too, that this label only applies to cancer. I don’t hear people calling themselves heart disease survivors or flu survivors. What does adopting the survivor label do to our self image? Cancer become a part of who we are, rather than a disease we had (or have).
Rather than honor people with cancer, I think it cheapens the term. After all, “surviving” is a function of having access to good health care. I saw a doctor. Several, actually. I got diagnosed. Then I got treated. How does that compare to a child molested by his priest?

Second thought is, when do we honor the nameless, faceless billions who didn’t survive?”

These womens words hit home with me and make me examine what I mean when I talk about survivorship.  I don’t disagree with Katie saying that she objects to putting herself in the same box as a holocaust survivor – I know there are people out there who have suffered and lived through horrendous things. But I have listened to many cancer survivors downgrade what they have been through to the point of making it seem as if they had a cold for all the acknowledgement they are willing accept. Chemo patients think radiation patients have it worse and radiation patients think that chemo must really suck. And if you have done both PLUS surgery…well, you REALLY get the prize! Younger people have it worse than older people, blahblahblah. I even had one woman tell me that she really didn’t think she deserved to be called a survivor because she only had a lump. How big was her lump? The size of a walnut. That is huge! It is as if there is a grading system to having had cancer, and it seems that some cancers are worse (or BETTER!) than others. Let me tell you this from someone who had cancer and had a parent with cancer ….if someone tells you that you , or your loved ones, have cancer,  your world changes FOREVER. If you choose to take the bull by the horns, fight it and are a better person in the end for it….you are a SURVIVOR.

For most of us, it is easier to tell other people they are deserving than to recognition for what we have been through. I spend so much of my time speaking to women and writing about the inspirational parts of what I have learned that sometimes I forget how badly it sucked. Today, as I walked past cheering people on the Survivors Lap at Relay, I teared up because these people were honoring the difficult road I had been on. Many of them have no clue – they are only imagining how difficult it can be. It is all of that and more….worse than any nightmare, and yet not so bad sometimes. It is worthy of recognition however you label it.

As immersed as I am in breast cancer culture, sometimes I forget why. When I go to the doctor because it is time for MY check up I am abruptly reminded that I do what I do because cancer happened to ME.  It is disorienting since you would THINK that I think about it all  the time.  In some ways I do…but I have put it into a box that doesn’t allow for much honoring – only coping and moving on.  Sometimes we need to remind ourselves of what we have done in order to see all of who we are.  And we cannot truly and deeply honor others until we do the hard work of honoring ourselves.

Claiming the title survivor is no different than the multitudes of ways that warriors in all cultures have keep track of their victories. And proclaiming kinship to others who have fought the same battle is  the  brotherhood of the warrior that has always existed to honor and respect each fighter. It is not just about who wins, it is about who joins the battle. Not everyone does.

In the speech I gave at Relay for Life I said:

“A cancer diagnosis is traumatic, but it is not the interesting part of our story. The interesting part is how any of us chose to live after it.
Survivorship is rising above and beyond what happened to us. It is about looking at where we were and where we are now and choosing to move beyond both. Though it may seem unjust that we are presented with the challenges we have faced, we are being tested and given an opportunity to rise above. How far we rise depends on each of us.
We can choose to let the disease take our hold of our spirit, or we can become bigger than we ever knew was possible. Survivorship is not about beating or outliving cancer – it is about how we choose to live our lives after being told that we could die.
Whether our remaining time here is 6 days or 60 years, this is our opportunity to clarify what is important to us, and to choose to live with greater presence and commitment to what is worthy of our precious selves and time. We cannot return to the way things were. We cannot waste our time wishing things were otherwise. In order to survive we must re-create our reality and choose to step into a new way of being.”

Cancer is not who I am. But it certainly has cleared the way for me to become who I am. In fighting for my life I found a stronger, deeper, more committed person. I discovered a toughness I did not know I had and reaffirmed a faith in Spirit that I thought I had lost. I uncovered lost dreams and lost friends. Because I was scared and did what I needed to do anyhow, I found out I can accomplish anything.  And now I also have an awesome new tattoo and am about to start grad school to become a better writer.  No, I am not cancer. I am a survivor because I took the lemons and made some REALLY AWESOME lemonade. That is what survivorship is.

(for further thoughts on survivorship please read my post Victim or Survivor)

It Gets Better May 5, 2011

Recently there have been numerous news stories detailing the deaths of young people who were tormented for being different or because they were gay.  While youth is always a time of great change and those who stand out in the crowd have always been targets of others insecurities, the extreme violence surrounding many of these deaths  in  a time in which we believe ourselves  to be so progressive is stunning.  In the past year our youth have been beaten to death, lured to “parties” in which they are tortured and raped, videoed and publically humiliated, and bullied to the point they can no longer bear staying alive.  A recent news story told the tale of two 13 year old girls – best friends – who killed themselves at a slumber party. Their parents suspect they had been planning it quietly all along and they did not want to be stopped . This was not a “call for help” as we traditionally have viewed suicide. In their minds, death was the only way to end the constant abuse they suffered at the hands of their peers .

Closer to home, last month over dinner a young friend of mine spoke of a 13 year girl at her school who was different, never seemed to fit in , had family troubles and who took her own life.  I have seen so many of these kids over the years.  A  young man named Colin stayed with me while he escaped the abuse he suffered at the hands of his extremely religious parents because he was different.  He disappeared one day and his parents found him two weeks later hanging in the woods in their back yard. When I practiced counseling and did crisis intervention my office was full of teens struggling to stay alive, afloat and in one piece.  These kids were rebels, honor students, athletes and GLB teens who felt they did not – and could not – measure up. They were tormented at school and often held to unrealistic standards by parents with deaf ears. Some felt themselves to be so different it terrified them and they could see no way they would ever fit in. Their problems were belittled, the stresses they were under discounted and they sought control by acting out, through self-abusive behavior and ultimately by ending their lives. They did not believe there was help to be had and could only see a lifetime of the same garbage ahead of them.  It is no wonder they chose to close the book.

To my young friends out there:  I want you – all of you,  wherever to you are – to know that YOU ARE NOT ALONE.  And, it does get better.  SO MUCH BETTER.  I PROMISE.  I know what it is like to be bullied, shunned and tormented for being different.  I know how hard it is to shine.  I know all about hating yourself for things you cannot control, and how difficult it is to believe that things will ever be better. I know what it is like to feel so unbearably different but I also know  how scary AND  exquisitely beautiful it is to find out who you really are. There are many people who understand, who will lend an ear and a helping hand.  Believe me when I tell you I know how hard it is to face another day knowing you cannot, and will not,  ever be what they want  and it seems so easy to just disappear.  Looking back, I am so very happy that I didn’t let the bastards win.  Keep fighting the good fight- it will not be forever.  You will find your place, you will find many others like you  – you are not now  — and will not ever be— alone. If you doubt my word…TALK TO ME  — here is my email : becomingamazon@gmail.com – I am ALWAYS available to you.  Please do not end your story before it even gets to the good parts.

To the “responsible adults” around us:  This is a nation founded on the principals of rebelliousness and individuality.  Our country’s founders came here to escape intolerance.  Why then do we as a nation silently condone persecutory behavior when it is directed at the shadows of our societies – those we marginalize due to race or sexual orientation?  Your families were once the very people hiding their beliefs, hiding who they were, running from the religious zealots who said they were wrong and who dictated “gods” word differently than your families believed.  Have we forgotten why we came here in the first place????

We need to instill a tough national ZERO TOLERENCE policy around bullying, discrimination and discriminatory violence regardless of the age of the perpetrator.  Both children and parents should be held equally accountable for acts of terror and violence targeting other youth.  Teachers, principals and school boards should be held accountable for acts of bullying occurring on their campuses  AND  for acts of violence that occur off campus  when the  seeds were planted and word was spread during school time. Family, friends and neighbors need to stand up for our youth; we need to speak out, jump in, notify authorities and stop pointing fingers or saying “it is not my problem”.  IT IS OUR PROBLEM.

Every evening the news carries stories of youth being bullied, after school “fight clubs”, malicious texting and abusive social media interactions and we turn the sound down, throw our hands up and wonder who is responsible.

WE ARE RESPONSIBLE.

WE DID THIS TO OUR YOUTH.

WE CREATED THIS PROBLEM.

AND WE NEED TO PUT AN END TO IT NOW.

 

We need to create more opportunities, both educational and social in which individuality and self-expression are supported, explored and celebrated.  When we foster competition over creativity and when sports teams are funded while the arts are being shut down  we are raising a generation more aggressive and less tolerant of those who are different. We need to back off on the pressures to succeed that we put on our children due to our own adult fears of failure.  Let them be kids, love them for all their crazy glory.  Stop trying to make them little adults imposing on them some weird standard for plastic perfection.  Let them PLAY and explore and create, then ask them to be responsible – not the other way around.   Our priorities need to change.

Our youth are our future.  In a society where adults turn a blind eye on youth picking on those who are unique what does that say about our future?  Where will our creativity disappear to?  Where will our individualism and all the things this country was founded on disappear to when our children are too afraid to stand out? Are we becoming a nation identical to the ones we fled from so many years ago?  Keep in mind that the world’s richest man was a geek – shunned for not being an athlete and meeting some “american standard” for athleticism and aggression.  What if he ended his life at 16  because he was weird and bullied?  What would we have lost?

To the parents out there:  Shame on you to those adults whose own closed minded perfectionism bred such intolerance in our children. Shame on you for closing your eyes, for your lack of accountability and your apathy.  You have forgotten your role.  As parents we hold great responsibility  – our children are not ours  to use as pawns or tools to foster our hatred and biases. They belong to the future and as such need guidance in staying the course of integrity and strength in the face of pressures to follow the easy path of conformity. And though you will never see this, to the parents of Colin:  I will never forget that your child died because you couldn’t love him for who he was instead of who you wanted him to be.  He was an amazing young man — too bad for all of us that you didn’t see that.  You set an example for all  parents to learn who our children really are …you may be pleasantly surprised.

Thankfully many, many more parents work hard to raise conscientious, caring and compassionate kids….THANK YOU.  I have the good fortune to know and work with many of your young people, and I love them dearly for how hard they work to do the right thing. You are teaching them that regardless of your  specific beliefs we all hold a piece of God, and to extinguish that  through demands of conformity or acts of violence, robs us all. I am so grateful for your compromises, your wisdom, your words and  your silence  even when your were scared.  As a single parent of young adults, I know how hard it is….but I also know that the most important thing we ever give our kids is acceptance.  And sometimes, that is a hard thing for us to give without any attachments.

To my fellow warriors, rebels, GBLT rule breakers, artists and creative souls….I love you all.  I honor all that you are, all that you have been and the challenges you have faced.  So many of you hid when you were young waiting for a safe time to be truly you….and I love who you have become!  I am so glad that you stayed here with us as you continue to brighten so many lives.  I wish that these kids could see you then and  now so that they would know what is possible. They so need to know what love and acceptance really looks like.  Thank you for helping all of us step up to being better people.

Please check out the following resources:

It Gets Better Project founded by Seattle’s Dan Savage

Pink  ”Perfect” explicit

Lady Gaga Born this Way lyrics

Light it up March 30, 2011

“Contradiction

I’m conflicted with being a hypocrite

And through these songs you can witness it

The difference is that I admit this shit

‘cause I’m just like you

Walking the fine line between saying it

And living it”

~Macklemore

I have quit writing more times than I can count.  In fact, I have quit many things – and people – more times than I can count.  I have avoided, belittled and stalled on amazing ideas and plans and I have been far less than I could be. I had gone into hiding and shirked my calling. I have ended friendships, jobs and avoided being recognized. I used to think that it was just a “commitment” issue that caused me to be unable to fully engage, but recently I heard words come out of my mouth that told a different story.

I was giving a long list of reasons why I really shouldn’t write to my son the other day.  He got frustrated with the never-ending excuses and said JUST DO IT MOM.  “I can’t” I replied.  “If I do, someone will find out someday that I can’t always live the story I tell, and they will call my bluff and everyone will know that I am a fake and it will be horrible”.  Openmouthed he looked at me and with thick eighteen year old sarcasm he said “REALLY, Mom?????”  Confessing this to a young adult fully in the throes of self-discovery shook me into realizing how universal this fear of being judged is, and how limiting.

The next day I got in the car and plugged in music my son introduced me to from Seattle hip hop master Macklemore in which he talks about the difficulties of being a white, middle class hip hop artist.  He speaks of the need to share your story and of the urge to create that goes beyond your own self-imposed boundaries. He totally gets the paralyzing fear that you are going to be called out on how well you walk the talk.  He challenges us to honor the places we are contradictory so that we are more true to ourselves and liberate our creativity from self-judgment.  Hmmm…..

I am often front and center in leadership roles that mask my own insecurities. I would love to live a quiet life out of the path of action but something keeps pushing me into it.  Destiny, karma, or whatever, has given me the ability and opportunity to serve others even though  I’d rather be unknown .  I have tried, but I can’t fight it. I have this over riding sense that I am supposed to speak up and speak out even as I worry that someday the skeletons in the closet are going to have a big ol’ dance party in front of everyone I know. I still hear the voice of someone I loved challenging me:  “How can you help other people when you are so screwed up?”.  Said years ago, it continues to echo within me.

Writing in particular is a challenging and often completely bipolar exercise. Some days I get up so excited to write that it is all I can do to get through the day until I can sit at the computer.  The words just flow out of me and the connection to a deeper wisdom is effortless.  It makes me incredibly happy and everything is good.  Other days the voices in my head drown out any enthusiasm with their shouting about how worthless it all is, how self-indulgent and arrogant I am. Worse yet….what a liar. I struggle with getting out of bed, much less with how to be my truest self.  I am often not a very good cancer survivor, and frequently can’t find anything positive about who I am now because of it. Most of the wisdom found on these pages was discovered at the end of many a long road of hardship that a truly wise person would have seen coming and avoided like the plague.  While I feel the truth in the words that flow so easily on those magical days, the reality of living them fully is often daunting enough for me to hide not only my gifts, but myself.  What if I am wrong?  What if I can’t?  Who am I to say these things?  For God’s sake, what if someone finds out I am human!???

In my all or nothing life, I frequently judge myself too harshly –if I am not all wise, than I am nothing.  And if I am nothing, well, then that is just how it is so I should keep my head down and maybe no one will notice.  Certainly don’t put myself in front of an audience who will all be there to see me fall.

But,  there it is….I sit with the knowing that I am both wise and stupid, successful and not, and to live this life fully, both sides of the coin must be embraced.  I do walk the fine line between saying it and living it, and am nothing if not a frequent contradiction.

Perhaps I need to remember the day I went to give a speech (for which I had paid a lot of attention to how I looked)  to have my mom tell me I had chicken shit on my stilettos. We laughed it off after a cleanup and I went to the microphone relaxed.  The speech went great -I came off as smart and funny and looked pretty good too.  No one knew about the poop….and maybe it was just what I needed to keep me grounded and focused on what part of me was most important.

It would seem fairly obvious that we all are in process, and we shouldn’t judge ourselves so harshly for where we are not living up to the face we put on for everyone else.  But we do.  I have too many friends that agonize over where they think themselves a disappointment to others, who choose not to love fully or pursue their dreams because they need to keep their carefully developed persona intact.  We are so aware of our own faults and mistakes that we wear them as a shield to protect ourselves from our dreams.  It is an awfully heavy burden to lug around.

I challenge you to look within at the areas where you act as if you are less;  where you don’t stick your neck out, say what you need to say, act on your dreams or love as fully as you would like because someone might see the contradiction in your intentions and your actions. Don’t listen to the people who scoff at how “you talk one thing and do another”, who question the validity of what you know, who hold you back because of what it means to them if you take risks.  If we change ourselves, the whole world will change with us because we are all so connected.  And if we call our own bluff and show the man behind the curtain, everyone will all be affected and called to a deeper place of integrity and honesty that will change all of us.

My confusion about the right path to take and the way I often flail around in my life are the same struggles others face more or less publicly.  We are not diminished by our challenges, but fed by them.  We all live lives of contradiction because we are complex ever- evolving beings.  There is grace in holding both the wisdom and the idiocy, and true depth and meaning come from a heart that has been strengthened by both.

I am sure there will be many more days where I feel like a hypocrite and unable to live with the contradiction in what I am able to do vs. what I write about.  I write this not as an apology or a public exposure of my weaknesses in order to cover my ass, but as a way for me to speak the truth about all that I am so that I can be more.  I have written nearly everywhere in this blog that we must live into what we choose instead of into our fear not because I am good at it, but because I must keep reminding myself.  We hide all we can be because we fear that in showing our brilliance we will also expose our dark.  As the chorus to the Macklemore song goes, we must “light it up to burn it down”.  And so I write today and each day  to light a match for me and for you and you and you and you and you…………..

(Check out this amazing music….Macklemore \”Contradiction\”)

Form vs Function (revised) January 4, 2011

(explicit – sorry mom!)

Form vs. Function

The conversation went something like this:

“It would really suck to lose a body part”

“Yeah, tell me about it”

“That is different”

“How so?”

“A hand or foot is functional.  They serve a purpose.  It would be hard to live without them”

“ And you think losing a breast is any different for a woman?”

WHAT THE FUCK ? Aside from the fact that the purpose of breasts are to be a food producing  body part that is responsible for human babies even surviving to this supposed evolved state…Every girl on the planet knows that showing some cleavage will increase attention and thus potentially get them whatever it is they want….how much less “functional” is that? If men pay twice as much for coffee they could make at home from a stand featuring young women in their underwear  we are going to debate the power and importance of a woman’s body?  The Girls Gone wild guy, Joe Francis, made a $100 million off of amateur video clips of collegiates baring their chests for the camera.  How can you tell me that breasts are less important than a hand?

Let’s look at this from evolutionary theory.  If we were a primitive society and 1 out of every 6 women has some sort of illness requiring breast modification they would be selected against in favor of women with two breasts that showed their health and capacity to feed babies.  No man would choose a woman who was visibly showing something “defective” about her.  While the women showing the results of the illness could be seen as being healthier/stronger/more able to survive for having successfully lived through the crisis, they would be over looked simply on the visual information presented to the males.  In other words, breasts have always denoted the capacity to produce, and production is indeed FUNCTION.

Yet, somehow consciously or not, we throw all this out the window when it comes to breast cancer.  Suddenly the facts of the evolutionary, emotional and social function are completely ignored and it becomes “just a boob” that serves no necessary purpose. We think the cancer problem is solved because we can just cut out/cut off the affected part and then get on with life with relatively little physical aftermath. We survivors are supposed to be grateful to be alive and be quiet about the inner details. There is no counseling offered as a regular course of treatment and frequently reconstruction is rushed by both patient and doctor further covering up the emotional impact of no longer meeting a standard that was unrealistic to begin with.

Even here, in the very medium I have set up to speak my mind, it is far preferable that I speak of the spiritual lessons & the deeper meaning of life as a breast cancer survivor. I am supposed to behave and fit into the pink ribbon box of conformity and go from being a tattooed rebel to walk-a-thon queen.  I will get crap for screaming my frustration that outsiders don’t understand the seriousness of the situation and how deep the diagnosis of breast cancer hits at our self worth and beauty as women.  I will get talked to about how I need to stay positive and uplifting.  But anger can be positive, and knowing that we are understood IS uplifting to women who are struggling with what they see in the mirror.  I CANNOT  FUCKIN  BE QUIET!

I am not angry about having had cancer – it has spurred enormous growth and positive change in my life Nor am I a feminist who blames men for why I shave my legs.  I appreciate beauty when I see it in whatever form it comes in.  I too have played the girl games to maximize my resources, and have a sense of humor about how all of that goes down.  But the hypocrisy and lack of understanding over what exactly I, and other breast cancer survivors live with is often hard to bear.

To be told that my body part loss is not as important as another body part loss is infuriating.  Especially the day after I get home from a work situation in which a very average woman with very above average amounts of cleavage got superior customer service because of what she showed and not because of who she was.  I am afraid to fly next month because which TSA line do I choose?  The one in which they grope me and figure out that one of my boobs feel wierd and so I have to strip?” or the one in which they see that I don’t have a boob when I appear to have one and they make me strip?  Either way I lose the right to have my replacement body part seen as part of my body – and lose my dignity.  Would they make someone take off their prosthetic leg?  Or is that a “functional” and deserves more respect?

If  there was a cancer that effected one in 6 men that the only treatment was  to have one or both of your  balls cut off  how fast would there be a cure or alternative treatment?  How would any guy feel about his dick without the boys?  How easy would it be to live without your balls even if all other bodily functions continued just fine? How would you feel about the form vs. function conversation if this was YOU?

Little Drummer Boy December 18, 2010

It is Christmas, a time of year when as a 20 + years veteran retailer I get lost in the frustration and mania of everyone else’s stress.  It is often hard to remember the hope, magic and promise of the season while I stuff merchandise I cannot afford into the bags of people who seem to not understand that Christmas is about who you ARE, not what you DO.  And so I am reminded of my favorite Christmas mini-movie  from my childhood….The Little Drummer  Boy.

Even though I am not a card carrying member of any particular region, I have always been touched deeply by the story of a man of infinite importance who was born in the most difficult of circumstances and times.  Innocently brought into a world in turmoil, from the day of his birth he is courted by men of power bearing wealth and title to show their importance. In the Little Drummer Boy story, a poor young shepherd boy, angry at the world, runs away and accompanies  3 kings to welcome the baby deemed the “Savior of the world” .  While they present the babe with gifts of magnificent wealth, he only has his drum.  Although he feels shamed by the fact that his is poor and does not have a gift of great importance, the drummer boy, seeing another child like himself, plays a song.  It is his gift from the heart – his simple gift of himself – that the baby Jesus responds to with a smile.

In the beautiful variation of the Drummer Boy song, titled Peace on Earth, David Bowie and Bing Crosby sing:

Peace on Earth, can it be
Every child must be made aware
Every child must be made to care
Care enough for his fellow man
To give all the love that he can

We are reminded by both the movie and the song that the most precious gift of all is our love. So often we think that what we do, how much we spend, what we give/wear/drive or how much we make really matters.  Even the best of us think that we can recycle more, eat less meat, or donate to the right causes in order to do our part to make the world a better place.  But the Drummer Boy shows that it is not what you GIVE that matters, it is showing up and being who you are.  The gift that is most needed in the world is the only one that you can give – YOU.

This is not to say that the presents under the tree that you have thought long and hard about are not valid, or heartfelt or appreciated.  I am sure that they are. But I want you to hear this – the one gift that your family, your children or the friend that is going through a rough time needs is you.  Your attention, your listening ear, your jokes or whatever makes you uniquely you is what the people around you most need.  Even when you think you do not have anything to give – when you feel starved yourself, poor, angry or otherwise not at your best,  you are needed and valued and have a place that can be filled by no other.

You do not know how the ripple of your presence will impact the world.  Each of us has an opportunity, by doing no more than being truly present and who we are, to change the world and make history. Regardless of the circumstances you were born into or find yourself in, please do not deny the world of the gift of all that you are. Give deeply of yourself.  Love freely.  Share your passions with us all.  This is the meaning of Christmas – to share all that you are – so that we all can be gifted by your full and amazing presence. There is only one you – how much greater of a gift is that?

Please, as this holiday season closes and we turn to the new year, consider making one of your new years’ resolutions to be more present with those you love.  And please, share your unique, beautiful, funny and intelligent self with those who need you most – those in hard times, who are alone, sick or in need.  Consider volunteering for an organization that speaks to you and learn the true meaning of what it means to give a gift. Who you are is all that matters.   Your presence could change lives.

(This is dedicated to my dad Bob Banks, a lifelong volunteer who taught me that when you do something for nothing  you gain everything.   You instilled the value in sharing who you are with others  in me as child through your actions not your requirements.  It was your finest moment as a parent and  a lesson I  never forgot.  And to one of my very best friends Jerry —  who as a volunteer and a friend  always gives fully and completely of himself.  I love you both!)

“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”.