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)

A Survivor’s Reminder April 14, 2011

Like most survivors, I am terrified of being diagnosed with cancer again.

Every weird feeling, illness or overtired day makes me think that something is seriously wrong with me. Facing these fears head on provides an opportunity to learn to stay present in the process when the fear of “what if” keeps you awake at night.

First, we must awaken compassion for ourselves.  We must treat our scared selves with the same love and caring that would give to our children or our dearest friend or lover.  Secondly, we need to clearly name the monster under the bed. Denying our inner experience and turmoil is not the solution any more than avoiding the situation is. By identifying our fears and what we are feeling, we gain the power and insight with which to deal with them.

We all have choices to make in how to view and react to the events going on around us or within us. Sometimes the choices we make about our responses are the only ones we get to make in the middle of the challenges we are facing. We can wallow in grief and confusion; be in denial, or ignore our level of fear and trauma.  We can be angry at cancer, at ourselves and at everyone around us. We can try to just get on with life and put it behind us and go back to “normal”. However, in learning to embrace our fears as part of our inner make-up and not deny their power allows us to create a deeper understanding and compassion for ourselves and ultimately for others as well.  By continuing to engage in life fully, even when we are scared, we grow richer in our ability to love and to heal ourselves and those around us.
- Robyn Lynn, Everett, WA

(Published  in the American Cancer Society Volunteer  HOPE newsletter April 2011  –   excerpted from a previous post: Warrior Training)

How do YOU define support? February 24, 2011

sup·port (s-pôrt, -prt)  tr.v. sup·port·ed, sup·port·ing, sup·ports

1. To bear the weight of;  hold in position so as to keep from falling, sinking, or slipping
2. To give moral or psychological support, aid, or courage to
3. To be capable of bearing; withstand
4. To keep from weakening or failing; strengthen
5. To provide aid in battle

How we ask for and receive support in times of trouble is a critical piece in our healing and progression towards a more fully and compassionately lived life. Even taking a closer look at how we refuse help provides clues to what we really need if we bother to pay attention. Learning to identify what is helpful in how we want to be taken care of by ourselves and others, is challenging as we tend to either say YES or NO to help without much other thought. Much deeper soul level healing can be achieved by taking time to investigate what we really want and by being brave enough to ask for and accept it.

Facing a world full of challenges that are enough to take the wind out of even Pollyanna’s sails, we all occasionally need the assistance, care and support of the people around us. Our friends and family have perspectives that enable us to gain an alternative viewpoint than the one that clouds our view when we are feeling weak or troubled. Giving ourselves the chance to rest and let other people take over some of the physical work speeds our healing and gets us back on our feet sooner. Accepting the physical and emotional help of people who are not entrenched in whatever our current drama is gives us assistance, perspective and room to breathe — if it is really the sort of help that feeds our soul.

But sometimes being able to talk to someone, or having loved ones who are trying to be helpful by getting things done, is not conducive to us moving through our current troubles. We are supposed to be (and want to be!) grateful for what is offered to us but we don’t pause to analyze if it serves us or if it just makes our “helpers” feel better because they did something.  Sometimes receiving “support” results in us feeling empty, unfulfilled and misunderstood instead of rejuvenated and loved.

We often try so hard to not be “needy” that we often cannot even identify what would even be superficially helpful – mush less what keys would unlock room for genuine healing for us. We are afraid to ask for what we desire because we fear being seen as selfish or ungrateful for what is offered.  But rather than being selfish, effectively utilizing the resources around us shows respect for the people who are trying to be helpful and respect for ourselves as it enables movement towards healing.

How we individually define support will change – sometimes rapidly – based on what is going on internally and externally. Sometimes support may look like having people call us for a chat or coffee date; other times it will mean being left alone for awhile – knowing that someone will check to make sure we haven’t gotten buried under a pile of old magazines after a week or two. Support could look like a bottle of wine or a movie or a gift certificate for a bookstore or some housecleaning. Sometimes support extends beyond what our loved ones can offer and we must accept their limitations and support our own healing by getting professional help.

Often times the hardest thing is simply saying YES to offers of meals, childcare, a ride someplace or household help. While these things may not have been high on our list of things we knew we needed/wanted, the fact that someone else took care of them will enable us to put our attention elsewhere. Set boundaries about times for visits/help, assign someone else to organize mass assistance offers, respond by emails instead of phone calls so that you can control when and how you communicate, make wish lists of things you would like to do/have accomplished/or need.  Most of all: LET THE PEOPLE WHO LOVE YOU SHOW YOU THAT THEY DO. In allowing the people around us to care for  us, we begin to see ourselves through their more compassionate eyes allowing ourselves to heal inside and out.

Many of us are raised to be fiercely independent and it can be an incredibly hard thing to ask for assistance much less to accept offers of help. Whether we are in need physically or emotionally, paying attention to what would help us feel better and asking for that from our loved ones allows them to feel connected to us. Receiving assistance can enable us to dedicate time and energy to the deeper healing that only we can do for ourselves. Rather than seeing us as a burden, people will surprise us with their wiliness to lend a hand, and ear, and open heart. We all go through times of needing to be set back on our feet.  If you simply cannot take for yourself without guilt, pledge to “pay it forward” and accept what is offered with gratitude and humility knowing you will have an opportunity to help someone in the future.

But likewise, support should not be something we ask for, or whine about not getting, because we are too lazy, unwilling or resistant to change to pick ourselves up. We need to clarify our personal definition of support and our motives for claiming need of it in order to accept what is offered in a way that helps us gain strength instead of enabling our difficult situation. We cannot bury our heads in the sand and then cry about how no one cared enough to dig us out. We cannot hold ourselves back from healing and growth because we are scared and then place blame on the people around us that they didn’t do enough for us. We cannot use the fact people are stepping in to help us as an excuse for not stepping up to the plate and taking our turn at bat.

People often think that “support” is like a bra — something that holds you together. Based on this errant belief we may desire support because we want someone else to be in charge or reject it because we think we should be tough and not involve anyone else. While we all may go through a time when we need a friend to help hold us together, support is more like a climbing harness – something to catch us when we fall rather than something that we stay in to keep us from flopping around. It is the backup plan for when things are unpredictable, surrounding us with protection that we have put together for ourselves. Now and then we have put more weight on it in order to make our next move, and sometimes it catch us when we lose strength or the unexpected happens. But it is understood that you can’t keep climbing if you just hangout in it.

Sometimes we claim that we are need of support – or we are angry we are not receiving enough of it – when the reality is that “support” is not what we are really most in need of. One of my best friends was going through a divorce with a someone who claimed he never supported her. The problem wasn’t the lack of support – it was that he held her up so frequently that she no longer had legs of her own to walk on. In his love for her, he allowed her to wallow in her depression, anxiety and self-pity instead of kicking her in the butt. She wanted someone else to take control of her life and for awhile he did, even though he had no way of knowing if that was really right for HER. She cared little about herself and her apathy created barriers to helping herself or receiving real assistance. She was in a hole and wasn’t putting a lot of thought into how to get out herself out – much less how to ask someone to help her find a shovel. She, like all of us sometimes, had to hit bottom to realize it is time to stop hanging in the climbing harness and resume the journey.

Sometimes we simply must fall — it is often at bottom that we suddenly realize how much of ourselves we let go of and how distanced from our hopes and dreams we have gotten.  Hard times give us an opportunity to put some thought into what we really want. We can ask whether the standards we have set for ourselves are good enough – or are too high; if the things we thought brought us joy really do and how we really want to live our lives from this place forward. We can begin to investigate what WE want and need, instead of what we think we need to do or be for other people.

We are not alone in these times….our friends and loved ones are standing in the wings ready to offer a hand once we make the decision that we – and our lives – are worth working on and ultimately saving. This is not about anyone taking over for you for the long term – it is about a lift over a mud puddle-or a chasm-until you get your own wings back. The people who care about us hand us a mirror to see who we have been and the potential of all we really are. They can remind us of what is important – and what is not – providing valuable clues into creating a supportive structure around us that enables us to become the best we can be. But it is not up to them to figure out how to fix things or to save us…we must actively investigate what kind of help will enable us to grow, heal and provide insight into what our next steps must be.

As we take the time to ask ourselves what real support looks like for us we learn more about our own inner life and provide compassionate room for ourselves to heal and incorporate the changes that challenges can bring. We can more effectively take advantage of the generosity of others and use our own experience to better serve our loved ones in the future.  Whether it is an illness, a divorce or other times of trouble, the challenges we face give us an opportunity not only to see how we push through, but how we care for ourselves. Listening to and acting on our own needs – instead of being an act of selfishness – enables us to gain strength to heal and ultimately to give back.

How We Became Breast Cancer Thrivers October 5, 2010

I am thrilled to be one of 43 remarkable women and 1 man whose lives were changed by a breast cancer diagnosis.  We have written our stories of courage and struggle, hope and compassion and are sharing them with you for free in the new e-book “How We Became Breast Cancer Thrivers” .  Please click on the link to download the free book and share it with your family and friends.  It is our hope that through sharing our challenges and successes that other survivors will know that they are part of a vast network of support and sisterhood.

Publisher Beverly Vote writes:

This free book was created out of our need to give back after our lives were strengthened by others reaching out to us when we needed help for our next step forward. It is now our turn to reach out in hopes of making a difference for others.

In the 44 chapters, we candidly share the experiences that changed us from being scared and helpless to living an empowered life. You will read about choice, advocacy, support, advanced stages and recurrence of breast cancer, divorce after breast cancer, new careers, new love, life lessons, and life purpose. Many chapters include messages how their Faith and a higher spiritual power played a role in how to thrive. Others learned how to believe in themselves and that their life mattered. Some of us believe that our diagnosis of breast cancer wasn’t meant to be a death sentence as projected by the medical experts, but a calling to heal not only our body but to heal our life and to show us a new way of life.

Feel free to forward this e-book to anyone and as many others as your heart desires, and invite them to forward to others. Just as others freely and compassionately gave to us, it is in that spirit we we felt a need to give back, and to give forward.

CLICK HERE TO DOWNLOAD!

Namaste September 22, 2010

At the beginning and end of every yoga class as well as multiple times throughout we are asked to bring our hands together in Namaste.  For those non- yogi’s, the “Namaste” gesture, or mudra,  is placing your hands in prayer position with your  thumbs resting on your sternum next to your heart /at your heart chakra.  Namaste is a gesture of greeting or honoring that roughly  means  “I bow to you”.

Ram Das translated Namaste to mean:   “I honor the place in you in which the entire Universe dwells, I honor the place in you which is of Love, of Integrity, of Wisdom and of Peace. When you are in that place in you, and I am in that place in me, we are One.” (Wikipedia).

Aadil Palkhivala, founder of Purna Yoga and the yoga studio I attend, says this about Namaste:  “The gesture Namaste represents the belief that there is a Divine spark within each of us that is located in the heart chakra.”

The simplest translation is what really gets me: “I greet the Divine within.”

I have struggled regularly and deeply with this concept of honoring the Divine in me –  especially over the past year.  As if the action of honoring myself as important weren’t hard enough, I also am being asked to recognize myself as part of the perfect wholeness of the Divine. This is a difficult concept to embody for anyone – stupid mistakes, wrong turns, and tragic events make it hard to see ourselves as intimately connected to the Divine, much less to understand that we are all the embodiment of the sacred.  A year after being told I had cancer, I certainly did not feel do not feel whole or divine. So, warrior that I am, I engaged in earnest in the learning to honor the Light within and view myself, and my journey as the embodiment of Spirit.

Restarting a lifelong passion of yoga 6 months after finishing a mastectomy and cancer treatment, I had deeply emotional body image issues that followed me to the mat. The first part of every class starts the same:  we sit quietly with our hands in Namaste. This should have been the first opportunity I had to connect with the sacred and really melt into a little bit of precious “me time”. However, when my hands were in Namaste, I was acutely aware of one “real” boob and one “fake” boob and immediately became absorbed in thinking about my chest. I noticed the lack of energetic symmetry, mourned the loss of having two soft breasts, cringed in pain from the nerve damage from surgery, and worried that my prosthesis was going to fall out of the inadequate shelf bra of my yoga top. How was I supposed to honor the divine when I was angry, hurting, exhausted and frustrated by the changes cancer wrought on me? How do any of us  come to terms with  the perfection that we are in THIS moment – perfection that is not separate from God regardless of our flaws or issues?

The word yoga derives from the Sanskrit root “yuj”, meaning to unite. Yoga it is at its heart a discipline that involves uniting physical, spiritual and mental elements – something that is largely ignored by today’s pop culture versions. In the tradition that I follow, emphasis is placed on filling oneself with the Light of the Divine in order to expand not only our view of who we are, but to move in the world from a place of compassion and love.  While moving through the various yoga positions we are asked to breathe in the light of the Divine and fill our bodies with it. And at least once in each class we do a meditation designed to bring us to a deeper connection with our own sacredness. Starting with our hands in Namaste, we imagine a flame of Light, (or love or Divine) in our heart. We slowly raise our Namaste to our throats with the intention that the words we speak be fill with Light and love. Next we move to our eyes, that we may see ourselves and others surrounded in Light and Love. Then on to our foreheads to facilitate thoughts filled with Light and Love. And finally up to the crown of our heads and cascading down around our body, so that we are sealed in a cocoon of Light and Love.

If having my hands in Namaste was challenging to me, this concept of filling myself with the love of God/dess was nearly impossible. While I understood that the idea was that I learn absorb to the unending love and compassion of Spirit already residing in my heart, I had a hard time actually believing that this was available to me. My relationship with Spirit was never one of being bathed in gentle golden light, but rather of lightning strikes and tumultuous change! So I changed it up a bit. I knew that I lacked compassion for myself regarding the challenges I have faced so I began with imagining compassion in my heart for myself and for others, compassion in my words, compassion in my thinking and compassion in my actions.  I varied that day to day with forgiveness, of my body, in the words I used, in the thoughts I had and in my treatment of myself and others. Some days the best I could do was acceptance.  And eventually I began to see the flame that John, my yoga teacher, spoke of burning in my heart – a tiny little golden flame of Love and Light – a Divine spark all of my own.  And, what filled me  with wonder was the realization that this spark did not exist in spite of the challenges and hardship I had faced and the anger and grief I was still working through, but because of them.

As I work on the cocoon meditation, it brings me closer to being able embody the concept of  Namaste and grow within myself the spark of perfection, love and compassion that is me as well as a part of God/Spirit/the Divine/the Universe. Sometimes as I sit on my mat and “assume the position” I do so with a huge sigh of relief as I remember that connection. Sometimes the sigh is one of resignation that I am there, making the attempt again. Often, tears well under my closed eyes as I breathe in the idea that I am a perfect part of a large whole. As I sit and nestle my hands into position against my lopsided chest, I learn to forgive myself for having had cancer, for having had angry and resentful thoughts about by body’s looks and abilities now, and for not being perfect somehow.  I learn to treat myself with the respect, love and compassion that I would show to another beloved person.  I am learning to love the body that I still have, in all its’ imperfections. I breathe in deep gratitude for the fact that I am still here to sit in my yoga class and struggle with learning to greet the Divine within.  As I  learn to live Namaste in my daily life as well as when I am practicing  yoga I begin to see that the Spirit does indeed  reside within me.  I see the flicker of the  flame of  the Divine  that resides in you.  And when you and I are in that place in which the Great Mystery  resides within us we are One. In  that Oneness we are whole.  NAMASTE.

Saying Goodbye August 29, 2010

I recently attended the “funeral” of my beautiful friend Leslie who is in fact still living. This may seem like a shockingly bizarre thing to hold, much less attend, but her life changed abruptly and dramatically in an instant, leaving her with little resemblance between the “before” and “after” Leslie. While coming home from work one day on her motorcycle she stopped at a traffic control light to get on I-5 and was hit from behind by an SUV.  She is a very small person and flew through the air – the impact from the crash rattled her brain causing a traumatic brain injury that has changed her life beyond measure.

When I first met her, Leslie was an athletic and stunningly gifted dancer.  She was an avid martial arts practitioner, a teacher in self-defense, a warrior in all uses of the term.  She was beautiful, sexy, intense, focused and intimidating.  She was smart, sharp witted and a powerful and extraordinary friend and teacher. She was a force to be reckoned with and there was no question about her capability to take on anything.  While she is still many of these things, her injury left her walking with a cane to combat dizziness and spacial disorientation and she needs to be asked if it is okay to hug her since people can become easily overwhelming.  Her coordination is sometimes lacking, her focus wobbly and her spirit confused.  She has had to learn to ask for help she never would have imagined needing and has had to swallow her pride more times than I imagine she admits to. In all probability she will never dance the way she used to, ride a motorcycle again or tackle life with the same “in your face attitude” she once was queen of.  While we, her friends and loved ones, still see aspects of  the goddess we loved, she does not recognize the person  she has become and though it has been a couple of years, still mourns the loss of all that she was.

I was diagnosed with cancer and had a mastectomy several months after Leslie’s accident.  The suddenness of my diagnosis, surgery and follow up treatment left me feeling as if I too had been hit from behind while I was minding my own business, obeying all the laws I was told would keep me safe.  Who I knew myself to be as a woman was taken away leaving me with a disorientation so severe  that I could still feel the missing breast and was newly shocked each morning when I glanced in the mirror.  Since I did not have chemo (thus keeping my hair) and I wear prosthesis, other people didn’t necessarily realize that I had changed physically and internally in unimaginable ways that made me a completely different person than I was before. In addition to  the exhaustion, physical changes from meds and mental overload from the whole process, having an amputation of such an  essential part of womanhood at the age of 39 left me in a tailspin of “who would want me/love me?” and “how is THIS beautiful?” . While I don’t mean to minimize the challenges Leslie faces to this day with a permanent brain injury, I know that when you dig past the layers of physical limitations, she too is left to face the questions of “who am I?” and “How I am still lovable/ acceptable/beautiful when I did not choose to be the person I have become?”

In keeping with the tradition of the community of women we belong to, she called her loved ones together for a ceremony to honor her transition. Her need to say goodbye to the person she was and to breathe into the person she has become with gratitude and love instead of resistance was critical to her healing.  There was little difference in the intention and proceedings from other funerals or memorial services I have attended. The ‘old’ person was honored and released, many beautiful words were spoken and much love expressed.  Stories, photos and anecdotes from a life well lived were shared.  She was assured of the love of her family of choice and community and we welcomed her new self into being.  Yet I noted from the words and attitudes of many people present that there remained a profound resistance to the grief, anger, frustration and confusion she felt over the unasked for changes in her life.  Many of her friends were so glad that she was alive that the cost seems to be minimized.  They have gone back to their lives and believe that somehow she too is going to be much as she was before the accident . Well meaning though they are, and as much as they love her, it is difficult for them to let go of who she was in order to fully accept who she is becoming.

As a survivor of a different sort I have talked to Leslie many times about how difficult it is to carry on a life that is so dramatically different in ways that may not be readily apparent to the people around us.  In our society our identity is defined by the things we do, and the external person we are; it is easy for those around us, and ourselves, to believe that IS who we are. To have that identity suddenly removed from us leaves a gaping hole that is hard to come to terms with. The person we were may not have been perfect, but they were much loved by us;  we had put a great deal of effort into maintaining them and what is left when they are gone is small, raw, uncertain and tentative in a way can make the people around us uncomfortable.

I am not speaking about an unhealthy lack of understanding regarding what lies within us; only that as women the dancer/ healer/ teacher/sexy woman/motorcycle mama/full-breasted womanhood image that we wrap ourselves in is such an integrated piece of who we are that the loss of any of those pieces, much less most or all, is catastrophic to our emotional bodies.  Our loved ones deeply wish for our healing and well being and yet often fail to understand that we have suffered a death and those pieces will not come back in the same way, if at all.  It does us no good to be told that we are “still___________” (fill in whatever adjective or title) when we know deep down inside that it is gone from us – or at least, our ability to relate to that is gone. The struggle to get others to understand  and accept, when we are just barely doing so ourselves,  creates even more stress and often we just choose to pretend to go on living the same life, further burying our loss and grief.

There is a surprisingly elevated level of relationship difficulties in women who have had a cancer diagnosis.  While studies surmise this is due to men not coping well with the additional responsibilities of being a caretaker, I would guess that some of this is due to the  “identity crisis”  resulting  from the survivor no longer being the person internally AND externally they once were.  The frustration of not being seen and heard in their  grief over what once was, and their inability to move on because of the lack of support and acknowledgement for the deep feelings of loss  and “who am?”  “What is next?”  leaves couples no longer able to relate.  Who are we if we are not ____________ ? (fill in the blank with whatever comes to mind).  For survivors of many types, the hardest work is not that of the battle to survive, but that of defining who we are at the end of it all.  That is a battle  waged  internally under the hardest conditions. The people we most need to help us through the darkness believe the work is done because we are “healed” and have moved on, leaving us alone knowing that we are not our old selves any longer but are unsure about who exactly we are now.

I once spoke with a woman whose step mother had a mastectomy 2 years ago who told me “….boobs really matter to my dad” then went on, “My step mom has had a really hard time and has never gotten over her diagnosis  and treatment and I don’t know why. We are just so glad she is alive”.  I felt great compassion for her  but  I wanted to shake her.  Do you realize what you just said, I wanted to scream?  Instead I said, “Our breasts our womanhood.  I am sure she is happy to not have cancer, but when she looks in the mirror she doesn’t know who she is.  She knows that her husband thought they were important and she probably feels he misses them too and wishes she were different. The fact everyone else has carried on their lives only makes it worse…..no one understands that EVERY DAY she has to face the fact that she feels cancer robbed her of her identity (and maybe the love of her husband). Everyone carrying on as if being alive is good enough doesn’t help her heal.”  This daughter looked at me in shock and horror.  “Oh my god, I never thought about that.  I was so glad she wasn’t going to die….”  Like Leslie’s community before her ceremony, her family was so glad she wasn’t dead that in their love and commitment to helping her carry on living, they may not realize that something truly died and is being mourned daily.

As survivors, we need to take the time to thoroughly acknowledge what was taken away from us.  Our innocence, our physical selves, our self-identify, our health suffered a blow that will not ever heal.  This time to grieve our losses is not wallowing….it is a deep examination and farewell  to that which no  longer exists in order to actively and consciously choose what we want to create for ourselves. This is a gradual crafting of something precious and valuable and it deserves our love and attention.  We will never understand the “why me” & “why this” questions, but we can begin to grasp “who am I” if we allow ourselves the space to see all the ways we are the same and different.  This is an opportunity for the lovely aspects of ourselves that have always grown in the shade of our dominate image to have light, love and attention shed on them.  Each person must decide what this looks like for them – there is no right or wrong. The acknowledgement of all that we were, and honoring the process of death, creation and healing we are going through now is critical to fully accepting what the wheel of life has spun our way.  Acceptance is not necessary to continue as a survivor, but it is critical to reaching the potential of all that we may be and to truly heal from the trauma that was dealt us.

Leslie’s ceremony/funeral/memorial service was a beautiful and extraordinarily self aware process for her to let go with the support of those who love her. By including her community, she helped all of us begin to understand the depth of her loss and better enabled us to see the places she may need a helping hand to pass through on her path. As survivors sharing our grief, anger and confusion with our loved ones and support people, we nurture healing and understanding of the changes we are going through in order to bind us together instead of drive us apart. This is a gift not only for ourselves but also for our society as we heal the deep divisions we have created in our human family.

We need to understand, as did Leslie in her ceremony, that this loss is not leaving an unfertile void, although it may often seem so.  It is an opportunity for growth and we do ourselves an injustice when we hold onto what was instead of seeing what is growing within. We need to actively, with great compassion and curiosity, explore our new selves, shedding the layers that no longer fit and welcome in the new.  As we change, we allow the people around us to change and grow as well.

As loved ones and support people we need to ask ourselves if we are REALLY hearing, and acknowledging how incredibly difficult it is to have so much taken away. Or  instead are we just brushing off the uncomfortable feelings of rage and fear of change because we don’t know what to do or say in the face of such devastation?  Are we ignoring the challenges and changes and diminishing their impact because we are so glad the people we love are still alive? We strengthen the bonds of love between us with every time we choose to listen instead of talk, every time we reach out a hand to help instead of pushing through or worse – expecting them to push through, and every time we give them honesty in the face of theirs.  This is an opportunity for all us to learn to live a deeply authentic life by learning to accept what IS, instead of what we wish would be within ourselves and within our loved ones.

(This is written with much love and gratitude to Leslie who has shared her story with me with such honesty and clarity. You remain a teacher of enormous depth and wisdom for me and I love you dearly.)