The month of October is Patient Centered Care Awareness Month. It is a time to allow us to reflect on how we can be better partners with patients and to strive to understand their needs and hear their stories. A key component in becoming patient centered is listening.
In September we held our first Book Tasting, events where different members of HSC select an item to read from and engage in conversations around. The works that are being engaged with during this series are The Cancer Journals by Audre Lorde, My Grandmothers Hands: Racialized Trauma and the Pathway to Mending Our Hearts and Bodies by Resmaa Menakem, The Hidden Life of Trees: What They Feel, How They Communicate by Peter Wohlleben, Braiding Sweetgrass by Robin Wall Kimmerer, God Help the Child by Toni Morrison, and more. These narratives give perspective on the experiences, needs, and stories of many types of people and can be informative looks at what patients experience.
On October 31st from 12-1pm we have our next reading by Dr. Lisa Taylor. She will be reading from My Grandmothers Hands: Racialized Trauma and the Pathway to Mending Our hearts and Bodies. You can find more information and RSVP on our events calendar.
With our discussion on The Cancer Journals by Audre Lorde we engaged with a reading, but also with media about her life and a poetry reading she did only two months before her death. We began with a PBS video that explored her Lorde's life and legacy. From there we moved onto our reading.
“The Transformation of Silence into Language and Action”
Nobody wants to die on the way
Caught between ghosts of whiteness
And the real water
None of us wanted to leave
Our bones
On the way to salvation
Three planets to the left
A century of light years ago
Our spices are separate and particular
But our skins sing in complimentary keys
At a quarter to eight mean time
We were telling the same stories
Over and over and over.
Broken down gods survive
In the crevasses and mudpots
Of every beleaguered city
Where it is obvious
There are too many bodies
To cart to the ovens
Or gallows
And our uses have become
More important than our silence
After the fall
Too many empty cases
Of blood to bury or burn
There will be no body left
To listen
And our labor
Has become more important
Than our silence.
Our labor has become
More important
Than our silence.
I have come to believe over and over again that what is most important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood. That the speaking profits me, beyond any other effect. I am standing here as a Black lesbian poet, and the meaning of all that waits upon the fact that I am still alive, and might not have been. Less than two months ago, I was told by two doctors, one female and one male, that I would have to have breast surgery, and that there was a 60 to 80 percent chance that the tumor was malignant. Between that telling and the actual surgery, there was a three week period of agony of an involuntary reorganization of my entire life. The surgery was completed, and the growth was benign.
But within those three weeks, I was forced to look upon myself and my living with a harsh and urgent clarity that has left me still shaken but much stronger. This is a situation faced by many women, by some of you here today. Some of what I experienced during that time has helped me elucidate for me much of what I feel concerning the transformation of silence into language and action.
“Breast Cancer: A Black Lesbian Feminist Experience”
October 10, 1978
I want to write about the pain. The pain of waking up in the recovery room which is worsened by that immediate sense of loss. Of going in and out of pain and shots. Of the correct position for my arm to drain. The euphoria of the 2nd day, and how it’s been downhill from there.
I want to write of the pain I am feeling right now, of the lukewarm tears that will not stop coming into my eyes - for what? For my lost breast? For the lost me? And which me was that again anyway? For the death I don’t know how to postpone? Or how to meet elegantly?
I’m so tired of all this. I want to be the person I used to be, the real me. I feel sometimes that it’s all a dream and surely I’m about to wake up now.
December 29, 1978
What is there possibly left for us to be afraid of, after we have dealt face to face with death and not embraced it? Once I accept the existence of dying, as a life process, who can ever have power over me again?
This is work I must do alone. For months now I have been wanting to write a piece of meaning words on cancer as it afects my life and my consciousness as a woman, a Black lesbian feminist mother lover poet all I am. But even more, or the same, I want to illuminate the implications of breast cancer for me, and the threats to self-revelation that are so quickly aligned against any woman who seeks to explore those questions, those answers. Even in the fact of our own deaths and dignity, we are not to be allowed to define our needs nor our feelings nor our lives.
I could not even write about the outside threats to my vision and action because the inside pieces were too frightening.
Whatever the message is, may I survive the delivery of it. Is letting go a process or a price? What am I paying for, not seeing sooner? Learning at the edge? Letting go of something precious but no longer needed?
I seem to move so much more slowly now these days. It is as if I cannot do the simplest thing, as if nothing at all is done without a decision, and every decision is so crucial. Yet I feel strong and able in general, and only sometimes do I touch that battered place where I am totally inadequate to any thing I most wish to accomplish. To put it another way, I feel always tender in the wrong places.
A Burst of Light, from the Selected Works of Audre Lorde
Twenty-two hours of most days I don’t believe I have liver cancer.
Most days. Those other two hours of the day are pure hell, and there’s so much work I have to do in my head in those two hours, too, through all the terror and uncertainties.
I wish I knew a doctor I could really trust to talk it all over with. Am I making the right decision? I know I have to listen to my body. If there’s one thing I’ve learned from all the work I’ve done since my mastectomy, it’s that I must listen keenly to the messages my body sends. But sometimes they are contradictory.
Dear goddess! Face-up again against the renewal of vows. Do not let me die a coward, mother. Nor forget how to sing. Nor forget song is a part of mourning.
From here we watched a reading by Audre Lorde and discussed the questions:
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Distance alters our perception so radically - Do we have too much distance from patients and their experiences?
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“There is a timbre of voice that comes from not being heard and knowing you are not being heard which is noticed only by others not being heard for the same reason” - As healthcare practitioners what does this make you think of? How do you feel you can hear your patients better? How could you work on possible biases?
So take some time this month to engage with these materials, think about how we can be active partners in the patient experience, and engage with stories that you might not have been able to engage with before.
