Monday, December 1, 2014

"The power of staying with awful feelings - lessons from my 8-year-old patient" by Dr. Rob Rutledge

Many years ago, as I walked onto the children’s cancer ward, I was taken aback by the scene of a young mother holding her daughter tight to her chest. The mother was sobbing uncontrollably and the little girl was saying softly, “It’s going to be OK, Mommy. It’s going to be OK.”
Tara was 8-years-old and had been trying to comfort her mother during the hours it took them to travel from their First Nations community to the neurosurgery ward.  Unfortunately Tara had an advanced brain tumour which had spread throughout her brain and spine.  I soon found out I would be her Radiation Oncologist.  Meeting Tara officially was no less remarkable than when I saw her from afar on the ward. Looking into her dark brown eyes for the first time, I felt the world fall away and time being held completely still. My mind seemed to expand with a sense of peace and joy. 
Kids getting radiotherapy for this type of cancer need to lay face down in a mask alone in the radiation room for about twenty minutes daily for six weeks. We bribe them with toys from the ‘Tickle Trunk’ to help encourage them to stay completely still.  However, Tara was not interested in receiving toys. Instead, she regularly went shopping for gifts to give to the Radiation Therapists. At Walmart she had created a picture of herself in a wedding gown to give to the staff. Her smile was beautiful, a white veil framing her dark hair. My heart ached when I saw that picture – her chances of living to adulthood were so slim.
On the last day of radiotherapy we give the kids a certificate signed by their treatment team to celebrate their bravery. However, Tara seemed more excited to give me a gift instead. She presented me with a dream-catcher (a web-shaped lattice garnered with a feather that, according to native tradition, wards off the bad dreams and helps us remember the good).  I was so touched by  this gift the tears welled up in my eyes.  How can an 8-year-old know that I watch my dreams closely – listening for messages from God to guide me on my path.   
I continued to see Tara in follow-up – and I was not happy. I had chosen a dose of radiation that was too high which caused her more than expected side effects. She was struggling in school, and I felt she had lost her shine. But Tara and her mother seemed happy in their lives. The time was rolling on and Tara had gotten through the first four years of follow up when these tumours are mostly likely to come back.  Tara’s Mom smiled more and more with each visit.
Tara suddenly died. We were all crushed.
We began to question why she died. I believe she had had an uncontrolled seizure caused by radiation scarring. An autopsy was planned and I was invited to attend. I knew from deep within my soul that I would not  walk away from the pain of this experience. A few days later I held Tara’s brain in my hands.  It was the strangest experience. But there was no reconciliation. No brilliant reflections. No moment of meaning. Just one big ‘DON’T UNDERSTAND’.
I have learned a lot about the power of staying with the difficult emotions since Tara died. I knew I could grow and heal by staying open when I was feeling most vulnerable. I remember standing outside the door of a young mother whose tumour had just come back in her brain. As I reached for the doorknob I didn’t know what words I would use to tell her this terrible news. I was scared and upset by how it might go. But I knew again, I would not run away. I would be completely present to her and the awful feelings coming up in my gut.
As the years go by and I continue to stay with my anxiety it seems that the awareness I bring to the act of breaking bad news has grown. I believe I create a space of peace and connection that people can palpate at some level even if they completely break down.  In those times we are sharing life’s wholeness – we can hold both the terrible implications of the news and the preciousness of the moment. The person in front of me seems to sense that I’m not scared of dying or being with people who are going to die, and it gives them permission to enjoy their lives now. 
My understanding of the healing process and the power of staying with our difficult emotions has evolved over the years.  I work with a brilliant Mindfulness Teacher, Dr. Timothy Walker, in offering weekend retreats for people affected by cancer.  Tim describes certain types of emotional pain as a knot or an entanglement of psychic energy.  The steps to transforming the energy is to first recognize when it comes up as a physical or emotional sensation – then to simply stay with those feelings (and to temporarily drop any storyline we are telling ourselves about what is happening).  When we stay present it seems the emotional tangles begin to unravel by some unknown process, and the blockage can be released. When I practice this technique in daily life I feel more alive, like the stuck energy has been liberated to help me be present to the next person I will see. 
Part of the ‘work’ of spiritual growth is to look more carefully at the storylines and assumptions that cause our distress. For instance, I had to clearly question why I felt so awful breaking bad news.  The thought “this shouldn’t happen to young mothers” was changed to “this is happening now - how do I want to respond?”  and “how can I bring love into this terrible situation?” 
I also found that seeing a therapist was invaluable in transforming feelings and issues I couldn’t figure out on my own or that were just too overwhelming to contemplate (like the fear of death). The feeling of not being good enough is not so dominant in my life because I worked with a therapist, and I have learned to reframe immature core beliefs.
Remarkably the process of staying with the difficult feelings somehow facilitates conscious understanding.  It seems to me there is something within us that wants us to grow and heal.  When we sit with our pain, and allow the emotions to shift and change, the miracle of new insights seems to be released from within.
Tara’s dreamcatcher hangs on my office wall.  And on the days when I’m feeling like I want to run away from my awful feelings, it seems to whisper to me “Stay. Simply stay”.