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.)
Robyn Lynn 