Tuesday, March 29, 2011

My Day at the Cancer Fair, Part One

Sometime in February I was contacted by Selma Annala, a family friend who works with the Cancer Healing Center at Legacy in Portland, with a request to use something from my blog as part of a presentation to be titled "I Am Not Just My Disease"-- part of a program on metastatic breast cancer.  Of course I was flattered and happy to oblige in any way I could.

A brief email correspondence ensued with Kathleen Moneymaker (who instantly won my heart by signing her emails Kathleen $$-- how adorable is that?) the palliative care nurse who was putting this particular presentation together. I sent her links to my blog entries, she selected The Parable of the Dead Mouse, I was thrilled.

In early MarchI got an email from the Susan G. Komen Foundation announcing the 2011 Breast Cancer Issues Conference in Portland on March 12th.  Could it be this be very same conference I had been asked to contribute to?  Why yes, it turns out it was!  I contacted the Komen Foundation for a scholarship ($60 is $60 after all, and my income is well, less then that...), then told Selma and Kathleen that if I got in, I would be happy to be part of presenting my story if they thought that appropriate, and bodda-boom, bodda-bing, bobs-your-uncle, next thing I know I am driving around the Oregon Convention Center looking for the parking entrance.

In the interim, I had called Selma after talking to a friend of a friend of a friend who was dealing with her first and rather dire breast cancer diagnosis.  I had done a lot of listening during that phone call and, in response to her questions, a lot of sharing my own story of this journey through the other-worldly landscape of being a cancer patient/survivor/patient.  I spent over an hour on the phone.  My heart went out to this stranger.   And yet, when all was said and done, I felt like I was able to be of such little help.  I can not give or even lend anyone my experience, it is mine, and they have to forge their own.  We each have to craft our experience out of who we are and what we are given and what we then choose to make of that.  Knowing that, my question became "How can I help?  How can I really be of service?"

Selma gave generously of her time and accumulated wisdom from years of counseling, being with, listening to, and observing lots and lots of people as they navigate this journey with cancer.  She helped me see the subtle ways in which I was trying-- still trying, in spite of thinking that I knew better-- to get someone else to do it my way, ie,  the way that has worked for me, instead of recognizing that the trick is to help them find, validate, create their own way, the unique way that might work for them.  (Oh, yeah-- she is that brilliant.  And she didn't even make me feel stupid while gently guiding me to see the error of my ways...)

So, it was great to see Selma's face in the crowd at the conference, to eat lunch with her (me nattering away the whole time about how I long to nudge the medical community-- patients, staff, doctors, everyone!-- to incorporate mindfulness into their workdays), and just to know that such a smart, kind, funny, competent woman has our backs as patients.

I enjoyed meeting Kathleen and was happy to join her on the dais for the presentation-- especially after she confided in me that she had pictured a small group of us around a table, and was a bit unnerved at the idea of manning a stage in front of an audience all by herself.  She was smart and funny, thoroughly and thoughtfully prepared, and clearly guided by a desire to serve.   It was a privilege to be seated next to her.

I was also privileged to meet the volunteer/survivor who'd came up with the idea and title for the "I am Not Just My Disease" session, and to read a beautiful poem written by her dear friend about living with stage four cancer.

Looking out into the audience of maybe 30 people, mostly women, who clearly had some intimate relationship with metastatic disease, I could see my story register on their faces.  In some way, it was their story, too.  But of course we each have our own story, just as we must each find our way through our story, and after the session I told Selma that I thought we could have spoken to those women for half as long and spent the other half of the time LISTENING to them.  These people have stories that need to be HEARD.

As patients we are talked to (or more often talked at) All The Time.  That is how this paradigm works:  You come in, sit down, shut up and Someone Does Things To You.  This keeps the cosy barrier of You Are Sick/ We Are Not in place, and no- one need contemplate how alike we truly are in our shared helplessness concerning the great mysteries of Life and Death.

The very idea of a patient questioning or talking back to a doctor is relatively new.  I bet my grandma never did it.  Heck, even my dad went mute in that little room and generally he was pretty free about sharing his point of view!  And I know for a fact (because one of my more tolerant and amused doctors showed me the notes) that some oncologists, in particular, have not taken kindly to my uppity desire to have a say in my own care.

I had talked with Selma over lunch about the Free Listening Project (check out their website!) -- something my friend Janet and I had encountered by accident while walking around Greenlake in 2009.  A woman was sitting with a sign that said:
FREE LISTENING:  NO interruptions, NO judgement, NO advice.   
How wonderful is that?  We went up to talk to her.  And while she was happy to answer our questions, she let us know that talking about what she was doing was NOT what she was here to do.  I accepted a card with the above quote which I have carried around ever since-- along with this remarkable, simple, potentially revolutionary way to be of service.

I asked Selma:  What if, at the next Breast Cancer Issues Conference, where I assume, as with this one, there will be four rooms with different presentations all going on at the same time, there was a Fifth Room set aside for Free Listening.  It could be stocked with volunteers, and at any point during the conference anyone-- survivor, care-giver, professional, patient, spouse, child. parent, friend, ANYONE-- could come in and be listened to.

Imagine that.  Imagine what the mere presence of such a room would say to all the participants at such a conference about the primary importance of the PATIENT'S EXPERIENCE.  Yeah, this may be your career, but it is our LIVES we are talking about.  I am happy for your expertise.  I am grateful for it.  But when it comes to my life, my health, my body, my choice, my experience, the only possible expert is me.  And when I speak from that place, I deserve to be heard.

Shhhhh... yes, baby, I am talking 'bout a revolution.  And I am gathering allies:  Fellow patients, meditators,  yogis, nurses, counselors, social workers, Reiki masters--  any one with an interest in mindfulness and service.  People inside the system and people outside of it.

It is small, slow work, like water wearing away a stone.  But have you seen the Columbia River Gorge?   Whenever I drive to or from the Celilo Cancer Center in The Dalles, I witness first-hand just how powerfully water can sculpt away rock, and what beauty it can leave in its wake.  And I am inspired.  Let me be like water.  Let me be of service.

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