How the Light Gets In

These days I am constantly surrounded by people touting philosophies like: “The Power of Positive Thinking”.  A lot of cancer programming, especially for young adults is centered around this rhetoric.  This type of programming is often done completely under the guise of good intentions.  It’s not that I disagree with the fundamental ideas of positive thinking.  I think being able to embrace the good in life, fostering loving relationships and finding beauty in the everyday can be very empowering.  For me the difficulty begins when positive thinking becomes rhetoric.

I believe this type of philosophy can be extremely loaded with real and serious consequences.  There is a big difference between trying to live a happy and fulfilled life by coming to peace with one’s diagnosis and, the suppression of feelings in favour of positive thinking.  The desperate need to sugar coat one’s life experiences can be extremely harmful and damaging.  This is where I feel positive thinking rhetoric goes very wrong.

Cancer has a way of pulling the rug out from under you. It shatters the confidence you may have had with your body, your mind and spirit. The comfort and conviction that once surrounded your goals and dreams is instantly thrown upside down the moment you hear, “you have cancer”.  I have personally spent a lot of time struggling with defining who I am now that I have metastatic breast cancer.  I have gone from planning a full life of accomplishments and dreams to an unstable life of frequent scans, toxic treatments and changing health.

The mantra of my past was centered around an aspect of positive thinking. I believed that if I was patient, everything will work out in the end.  This is no longer my truth.  I have had to come to terms with the realization that things will not all work out in the end.  This reality will not change with any amount of positive thinking. Right now I have no idea how I will come to a place of peace and acceptance. The idea of dying before I have really have had a chance to live is devastating for me. Somehow I hope, when my time does come, I will be able to accept and embrace it for what it is.

To be real, I have to face the fact that my situation is tragic.  I am constantly juggling a mixed combination of emotions: anger, sadness, fear, guilt, and happiness.  The list could go on.  As each feeling comes up I work hard to try to face it, understand it and learn to live with it.  One of those feelings I struggle with is anger.  I think anger has a bad reputation.  Often anger is thought of as destructive and dangerous.  Its true, anger can be both, but anger also has a magnificent life force to it. It can be a motivator. It can inspire a revolution.

The AIDs movement, that changed the fates of thousands of dying people, was not driven by positive thinking.  Change happened because people were angry. Access to drugs came about because people stood up and said “this is not acceptable”. It is not acceptable that those of us with advanced cancer cannot access the drugs we need because of bureaucracy and a screwed-up drug trial system.  It is not acceptable that as an act to save our lives some of us have to travel many miles to participate in up and coming drug trials.  It is not acceptable that incurable cancer patients have to face the dilemma surrounding quality of life verses quantity of life.  It is not acceptable that we are dying. Empowerment and positive thinking is important but so is addressing the dark side of cancer.  This is my reality.

I believe positive thinking is entrenched deeply in our society.  I think people in general will try to help others by sugar coating negative experiences.  This can result in feelings of isolation and guilt for the individual who is trying to process real feelings.  I think part of the problem comes from the fact that for the most part, everyone loves a happy ending.  Facing tragic outcomes is a difficult task.  We so desperately want to protect our loved ones from pain and suffering, we instinctually try to grasp at statements and ideas that reinforce positive thinking.  I have been guilty of this as well. For me, dealing with a terminal cancer diagnosis has forced me to look at how this way of thinking affects the individual who is struggling with adversity.  Too often people who are simply trying to face the reality of their situation are dismissed and reprimanded for being negative.

Most of the time I think I have come to accept the roller coaster ride of the complex feelings that come with a cancer diagnosis.  But then, suddenly from no where, deep in the depths of the my surroundings, the rumblings of positive thinking starts to rear its ugly head. People will come up to me and tell me, “just think positively, you can beat this”.  People will also say well meaning things like “wow your strength and positive attitude is going to bring you through this”.

I’ve had loved ones tell me to, “take what you can get,” when I explained that my stable results were actually okay news not fantastic news.  By doing this my loved ones unintentionally turned what I had said into something negative. The lingering implication being that I wasn’t accepting the good news and I was focusing on negativity.  This is not true.  I am not a negative person because I am keenly aware that stability is fleeting.  I have watched numerous men and women die within months of being declared stable.  Fantastic news would be to hear “you are cured”.  Being told that you will live another two months, this is just ok.

Early in my journey I met a woman who I will call Betsy.  I met Betsy in an art therapy class for people dealing with cancer. Betsy was a striking woman in her mid thirties, who was recovering from early stage breast cancer. I could see in her eyes that she was struggling. In every class she would describe her art piece in language that would reaffirm her belief that through positive thinking, she could conquer cancer. She drew beautiful pictures of landscapes and flowers and talked about how cancer had given her a new eye on life.

Through descriptions of her drawings she would state her intent to rid her life of any negative feelings.  It would come out time and time again, how desperately she was trying to cling onto her mantra of positive thinking. She seemed to struggle daily with pushing out her feelings of fear, anger and sadness.  By shear will she would breathe in the good and breathe out the bad. Her struggles were written all over her face.  You could visibly see in corners of her mouth the remnants of her hidden emotions as she would happily talk about how she was doing.  If you looked deep into her eyes and you could see her struggles with fear and guilt.

Near the end of the program, we were exposed to the real torment of Betsy’s struggles. One day, Betsy came to class and relayed that her mother had just been diagnosed with terminal and inoperable lung cancer.  She was visibly shaken up by the diagnosis. She described her mother’s emotional state as negative. So negative that she could not handle being near her.  She voiced her mother’s fear of dying, her mother’s anger at her diagnosis, her mother’s struggles with depression.

Betsy began to described her own fears that were centered around the pressure she felt to think positively.  She declared with shaking hands that if she went down the path of anger, fear and sadness her cancer would return.  Her fear of what she perceived as negativity had made it impossible to support and to be with her mother.  I don’t know what became of Betsy and her mother.  I’d like to believe that she let go of her fear of negativity and accepted her mother and all of the darkness that can surround a terminal diagnosis.  I hope that doing that allowed her the freedom and the space to experience all the complex positive and negative emotions that are part of being human.

Unintentionally the rhetoric of positive thinking creates a enormous trap. It systematically takes away the empowerment of the individual while simultaneously placing all the responsibility of their fate on their shoulders. Positive thinking can create lonely scary holes that individuals have to fight constantly to be in or to get out of.  It can feed harmful cycles of guilt and depression as one tries to suppress the reality of what they are feeling under an unrealistic facade of positivity.

So why is this?  How can something with all the best intentions be so damaging to the people who it’s meant to help?  Why do a lot of organizations and support groups cling so hard to something that can be so harmful?  Why is it that when I stand up in a group of cancer survivors and try to talk about the importance of allowing yourself to feel both the good and bad of a cancer diagnosis, I am taken aside and reprimanded for being angry and negative?

I do understand the need that Betsy had to feel that her cancer experience had been a positive life changing event.  I believe that this can be a reality for some people.  I also understand her need to cling to the positive aspects of life; to find the beauty in the everyday.  I think this is important.  What I want to dispel is the myth that positive thinking is the only solution.  That positive thinking can result in medical miracles.  That you can change your fate if you only think happy thoughts.  There is no truth to that.  I think there needs to be space for real feelings.

There needs to be space for an individual’s struggles and challenges.  The cancer community needs to create room for anger,  fear, sadness, real feelings.  I think we as a society needs to be aware of the traps that surround positive thinking rhetoric.  I think we need to spend our time and focus addressing people’s real feelings instead of feeding our need to sugar coat and to seek a happy ending.  Cancer can not always be tied up in a pretty ribbon. It can be ugly. It can be scary and it can earth shattering. The best we can do is to try to face and address our feelings and hope that with a lot of work and effort we can come to a place of peace and acceptance so that just maybe, one day we can embrace both good and bad and be free to be human beings. As in the words of Leonard Cohen’s song Anthem, “There is a crack, a crack in everything.  Thats how the the light gets in.”

9 replies »

  1. Heartbreaking, sorrow is part of it as you clearly show, but the body needs the to be focussed for the most part of healing and wholeness regardless of the possibilities. Without hope, life is intolerable sometimes.

  2. This is a very well written article. I agree that there is pressure put on everyone, but especially those who are ill, to just stay positive and then all will be fine. The trouble is, a person, ill or not, cannot always be positive – if that were the case, wouldn’t that be living in denial? And in the end, tamping down genuine feelings can potentially be harmful. I don’t get the sugar-coating that goes on all the time in Cancerland. And this does not mean I am a negative person either. I always say I’m a realist. I prefer realism and truth over sugar-coating or pretending any day. Each of us is entitled to live and speak our truths, cancer or no cancer. Each us should be allowed to feel our real emotions, whatever they are. Thanks for writing about this so eloquently.

  3. Ms. Craig, a refreshing and clear-eyed response! Good to hear someone debunking the Disney-fication of our feelings when confronted with cancer. Your writing will help many others struggling with the “darker” emotions – especially, I’m sure, younger people who’ve heard the words no one ever forgets hearing and knowing exactly when heard: “It’s malignant.”

    To me, what you emphasize in your writing is that cancer is not caused by one’s emotions, and is not affected by one’s emotions. Human beings are not in total control of our health. We can, of course, choose healthier ways of eating, etc.; not use any tobacco products; drink moderately, etc. However, there is a limit to our control.

    I am a longtime survivor of stage 1 breast cancer, but negative, even dire, images erupted during and long after my initial diagnosis and treatment, and still do. I know that, with breast (and many other) cancers, metastasis can occur or be discovered decades after the initial diagnosis.

    Sorry for going on and on. I wish you all the best – Carol Radsprecher

  4. I 100% agree. Once I stopped hiding my anger and allowed myself to be angry, it started to go away. I realized that maybe part of my anger (and all other so called negative emotions) at cancer were only partly about having cancer–and not just a little bit about having to fulfill what I think is a stupid role for cancer patients.

  5. Do you mind if I share this with my cancer support group? We talk about this often and you’ve described it so well. Also the feeling that others want you to be a cheerful motivational poster child, when really, our hands and hearts are stressed with just walking through the complexity of this path.

    • Of course share away.

      Yes this is a very complex journey. I find that there is a huge amount of pressure to reinforce the positive story and face of cancer. I struggle with it all time.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s