Every woman recalls the date of diagnosis.She’s memorized the sledgehammer wordsthat pulverized life’s familiar patterns.Exact phrases vary, but four words carrythe pronouncement nobody wishes to give:You.Have.Breast Cancer.Shock catches the breath.Disbelief stuffs the ears.“I have WHAT?”Outside, the world continues serenely in its maddening normalcy.Within, the mind struggles to wrap around this inky nightmare.Her entire world has blown apart.If or when she glues the pieces back together,the image is never the same.
I know I will forever avoid mirrors
and can't stand to be touched.
At least, not there
the image is not the same.
January 2007
Almost daily we are inundated, by the media, with the victorious, happy smiles of “survivors”. Having worked the special Olympics for many years, running the first successful program for mentally and emotionally disabled cub scouts in Pensacola Florida, working with AIDS patients, and being and activist for Epileptics, I myself have been caught up in the happiness of “overcoming disability or adversity”. I loved seeing the happy faces of each and every survivor and the tears of happiness in the parents, relatives, and friends and on lookers who urged each one forward to the “winning line”.
I have cheered as I have watched amputees run in marathons, felt encouraged by the sight of the wheel chair Olympics and parapalegic basketball games, helped to lead horses who bore the precious burden of a child with spina bifida or autism, and felt overwhelming gratitude and pride in a service member who gave a part of him or herself so that we, as American’s could continue to be free.
I have held the hands of AIDS patients, brought to their knees by the specter of death who, to the world, showed that they were strong but whom at night cried into my lap or just sobbed as I held them against my chest and gently rocked them as we spoke of a life ahead and beyond. I have taken care of bypass patients and transplant patients who face(d) each day with great strength while inside they were/are pools of pain and tears. I have witnessed the pain of those with rectal, colon, prostate, liver, and pancreatic cancer as they move through each day trying to be normal but inside knowing they cannot be normal again; while the outside world admires their courage and urges them forward. And now I know the reality of how superficial we as a people truly can be… for we see only the outside of the “survivors” and I think that is because most of us truly can not bear to see what is occurring to them within. Perhaps, that is because each of us knows that "there, but for the grace of God, could go you or I”?
I have walked through this world with epilepsy, aplastic, various immune diseases, and never let it see that I was ill… and everyone applauded when they found out or learned; because I never showed a sign. I survived years of childhood physical and sexual abuse and have tried to remain peaceful and loving and giving and forgiving. I love the people who raised me and hold no anger. I know that, they too, had their own pain. Hopefully, I have helped other such survivors learn to do the same? I have been called an inspiration because I could get down and break dance with the floor and get back up and do a full days work like nothing had ever happened. Or faced untold transfusions, never knowing if when I went to sleep at night I would wake up. I have never regretted these lessons taught for they are what made me who I am today but I am no inspiration and never wanted to be.
I was diagnosed with cancer three times back in 1993 (blood), 1995(throat) and 1997(breast) and never felt daunted. I was diagnosed with breast cancer, again in 2006… losing both breasts in 2007. I have fought throat cancer again, melanomas on my face, and a new growth near my liver. The reality of what is occurring both inside and outside has taken a tenacious and vicious hold and I can’t shake it lose and I am ashamed of myself for the weakness and what to me is self serving sorrow.. I have struggled to hide it and am failing... growing ever more despondent. But why?
We here so many stories of the strength of survivors; but we don’t want to hear about the weakness. Who of us would actually turn into a “Life Time” or “Hallmark” movie entitled “How I wished for Death After My Mastectomy instead of “Why I wore Lipstick to My Mastectomy”… or “Phantom Pain of Lost Limbs is Eternal and Drove Him Insane”, or “Suicide after Miscarriage?” NO ONE. We only want to hear the positive outcomes… we don’t want to hear or see the negative impacts of life’s tragedies. We want, no we NEED happy endings. We are a superficial society hell bent on stripping people of emotions that are destroying them inside because they might cause others pain and that would be selfish… We are a society that tolerates grief but puts a time limit on it.
Prior to going through this mastectomy, I was one of these people who did not want to really “see” or “hear” (DESPITE having worked with real life people who could no longer hold up the façade in private with their caregiver that they could hold up with others in the outside world.) I went along with the pattern of “surviving with grace and class" as the ultimate goal and look how it is done with such courage and strength. Fucking Bullshit!
Yes there is courage and grace in surviving (I have experienced it, witnessed it and rejoiced in it) but there is also abject loneliness, loss, and pain which we as a society do not want to acknowledge or simply leave in the hands of our mental health professionals; and as a once upon a time PAC Care Giver and now a post mastectomy/reconstruction patient, let me tell you they are doing a piss poor job! We want to put the negative and the painful in a dark closet somewhere and not see it except for those rare times when it finally beats down the door and comes out screaming and raging like the wounded animal it is. Personally, I am too worn out to scream and rage. (aren’t we all breathing a sigh of relief for THAT )
Now, we may catch a glimpse in those made for TV docudramas about some of the pain that is behind the survivor but they don't even touch the surface. Just as a war veteran never leaves behind the war, post traumatic stress is a constant part of these people’s lives as well and in some cases will prove even more destructive then the disease which impaired or maimed them from the beginning. And this, as I have learned, does not just pertain to the patient but to the families and significant others that try to help them but honestly can’t handle the pain ; many are in pain themselves. Perhaps that is why Hospice has become such a wonderful agency for the terminally ill as it alleviates the pain of the dying and their loved ones?
I wonder if we could set up such an agency for those living with permanent disabilities or disease? An Agency, staffed with people who provide emotional support, who will not come and deny the pain, the loss of self, the loneliness, or the spiritual wasteland. Who won’t try to make the patient feel better because they feel they have to fix the pain when nothing really can. Just someone who will let the pain and unhappiness exist and not be judgmental or superficial. Who will see the scars and see they are UGLY; they ARE UGLY and that is okay for they are a road map of survival. Who can understand the phantom pain that reminds the patient of a lost limb now buried somewhere or incinerated in some hospital basement. Who can deal with the emotional let down from constant discomfort that wears on the nerves daily. Who can hold the hand of those now physically or sexually dysfunctional and allow them to be mournful of the loss of a part of their humanness, their sensuality, their independence; their sense of being capable and grownup and responsible, desirable, and viable.
What would we call such an agency? How would we set it up? To be used, not like a support group (with other’s of a kind) but as an honest refuge with people not afflicted with a similar “survivor issue” but who can accept those afflicted for the real them. Where the superficial holds no weight. Where it is not how you appear to the outside world that counts but how you appear to self and spirit that holds the meaning. Where you can go to cry and people will be there to listen, knowing they can’t fix you but that it is okay to not like what you have become. It is okay NOT to be strong. Kind of like a PAC care giver… who can be called at the drop of a hat and be there. Just be there and NOT try to fix it. Who will accept the person's feelings and not chastise them, or call them dramatic, or add to the pain by telling them to get a grip or by pointing out how "good they look" or quoting religion. Difficult prospect..
In dealing with this mastectomy, I learned that I am not a strong person at all… but a lonely, frightened, child who needs a refuge from the world. My sense of self was stripped away in its entirety. Yes, I tried preparing myself for all of this prior to going through the surgeries and reconstruction; but nothing prepared me for it. Nothing! I have struggled for 10 months to accept what was done to me, kept up the walls and am now crumbling at an accelerating rate.
I have learned that people don’t truly write about the realities of the pain, that the loss of breasts is handled as well as it can be, in this day and age, but still seriously glossed over and treated superficially (let’s not even discuss the lack of support for male breast cancer patients). I am certain that this is felt with every journey between medical saviors and the survivors of their mediations but I can only understand it through the loss of breasts and the reconstruction with silicone that is hard and unforgiving and burns like a smoldering fire.. Knowing that there is no way out of this body now or away from this disfigurement and discomfort which will be with me until my death, I think I shall try to write about the reality of it from BOTH sides, and most of it is NOT pretty or comes with a Happy Ending of living happily ever after. I know there will be no happily ever after and just have to deal with it minute by minute. The truth is surviving for some simply comes with living and trying to get through each day the best you can with hopefully someone holding you at night and letting the real you show (tears, bitterness, sorrow, and all)… the real you that is not superficial and does not give a damn what the world sees but how the: survivor” feels inside; in the heart, the mind, and the soul. An honest, non superficial journey through breast cancer. Perhaps I will find a publisher?
Reality shows us that we are not just bodies … there is more then just surviving to the outside world. My eyes are opened and I shall also treat these people (who are now my peers) even more tenderly, more openly and with much more patience then even I once did before January 18, 2007. I now know what they feel like when they get up each morning, greet the day with thanks, and face an unforgiving world. I know what they feel when they get home and shut the world out behind their living room or bedroom doors. I have now walked a mile in their shoes; the problem is, like the “red slippers” of fable, I can’t take the shoes off and I am dancing as fast as I can.
The one thing I know for sure, and that I shared with my only daughter a few months after the mastectomy is this: if she came to me tomorrow and said "Mom, I have breast cancer and they want to do a mastectomy." I would tell her to run like hell... and live her life as a whole woman and enjoy the time she had in the body the Universe gave her. I will never condone mastectomy to anyone after dealing with the realities as I know them...I just have to learn, some way, to live with it myself now until the Goddess calls me home. I have to find that path that leads me back to those I love as complete as I can... and not cause anyone harm. "First Do No Harm"... the path of a pagan.
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