I was in Ashland at the Oregon Shakespeare Festival when Rabbi Margaret asked me to prepare a reflection (or something like one) for this afternoon. So Shakespeare was on my mind, as are so many other things as I prepare to retire from my job as a full time change agent in the world of breast cancer and as I confront what seems to be a medical condition that is hard to define.
So I guess you could say that the theme of this reflection is change and uncertainty and how we deal with it.
Maybe the only thing that's not uncertain about change is that it's inevitable. You probably know that. But it seems to me that change happens to us in ways we expect (like Rosh Hashanah or choosing to have a child), in ways we don’t expect (like illness or accident) and in ways we work to make happen (like going on a weight loss diet, or in my case, pushing for changes in cancer policy).
What’s less inevitable is how we respond to the changes we don't anticipate: we can embrace them; we can be paralyzed by them; we can learn from them, and, sometimes, we can respond in all these ways at the same time
All change brings uncertainty. Some types of uncertainty are worse than others. The uncertainty that accompanies the possibility of having a dreaded disease ranks in my world among of the worst of all.
When I was diagnosed with breast cancer at the age of 41, I quickly learned that there was little I could do to change the outcome of my illness. I’ve had all the treatments, and time will tell. So all that there was to do to affect that outcome, I did.
Then I found myself thinking about the hundreds of thousands of women who would be diagnosed after I was, and what might be done to create a more certain future for them, and a different future for the generation of women and men that will follow after them. These thoughts led me to my work as a breast cancer activist.
I've done this work for 15 years. I know that my activism has taught me a great deal. Keeping my ears and heart open to the many wonderful– and some not so wonderful -- people I’ve met doing this work has fueled my work to change the direction of breast cancer treatment and prevention. And I can honestly say that I have had an impact – on the lives of people I've touched over the years, and the policy decisions that are being made about cancer in this country and beyond. Now that I've announced my retirement, people I don't even know are writing to thank me for things that I did, some of which I don't even remember doing. It's touching, and a little embarrassing.
One of the reasons it's a little embarrassing is that no one works alone, and often people with the biggest mouths or those sitting in the chair nearest the camera get the most credit for the work done by many, many people.
Reflecting on 15 years of activism has reminded me that the kind of change that we work to make happen takes a long time, often longer than we have the time or energy for. So deciding to step aside so others can lead leaves me thinking about the uncertainty of what lies ahead for the things I have spent so much of my life working on: the work of challenging peoples' assumptions, getting them to think in new ways about things they think they already know, and inspiring them to act in a way that will have benefits for all of us.
And uncertainty is no small thing. Shakespeare said it best in Hamlet. Hamlet makes a famous speech in Act III that starts out "to be, or not to be." But the part that actually talks about uncertainty comes later on, and goes like this:
But that the dread of something after death,
The undiscovered country from whose bourn
No traveler returns, puzzles the will
And makes us rather bear those ills we have
Than fly to others that we know not of?
Thus conscience does make cowards of us all,
And thus the native hue of resolution
Is sicklied o'er with the pale cast of thought,
And enterprises of great pitch and moment
With this respect their currents turn awry,
And lose the name of action.
I saw Hamlet twice recently at the Oregon Shakespeare Festival, but this quote had been sent to me several years ago by a young woman named Julia. Julia's breast cancer had been mis-diagnosed for a long time, and, by the time it was found, her disease was very far advanced. Julia is an artist, and the action she took was to turned her experience into a very powerful exhibit of photographs about what it means to be Julia. I met her at a symposium at which we were both presenting talks on the ethics of breast cancer. We made a fast connection, and spent many hours talking, first in person, then by e-mail and phone, since we live on opposite sides of the country.
Julia is not yet 40 and she has two pre-teenage daughters. She wrote to me recently that has decided to stop treatment for her advanced breast cancer, and accept palliative care. She wrote, "I feel like I have made the right choice. And, as Bernard Shaw says, 'the world belongs to the masters of reality.'"
For Julia, this change in her life is about both learning from and embracing change in the face of great uncertainty about, not what the future holds, but how it will unfold for her.
In the words of Shakespeare, it seems to me that Julia has not let her will be puzzled by the dread of something after death. And I think that, maybe, just maybe, it's that kind of courage that gets each of us through another day, and – God willing – another year. Keeping our eyes open in the face of uncertainty is one important way to not lose the name of action.
© Barbara Brenner 2010