By Ilene Kaminsky
(Read part 1 here.)
“The more you hide your feelings, the more they show. The more you deny your feelings, the more they grow.” ~Unknown
Sitting with our feelings instead of disengaging or distracting ourselves is work. Feeling pain helps silence that internal critic that says, “I’m not doing enough.”
Healing circles accept we are doing our best without any criticism. It’s a safe space and a container into which we can not only use as a place to understand that feeling is both important and a productive part of the psychosocial spoke in the wheel that holds us up as we pedal the unicycle that is a cancer diagnosis.
There’s a special magic that transpires that’s difficult to put into words.
On Our Own
We’re mostly on our own with metastatic breast cancer especially. Even with the best of caregivers we’re on a very personal journey. On the unicycle we sit on a seat hoping not to fall over and tenuously balancing atop all of those spokes in the wheel - the axel is the diagnosis itself. Did it come as a shock? Did you have a BRCA gene in your family? Were you diagnosed de novo stage 4? Did you go through a primary cancer only to be diagnosed many years later with secondary or advanced metastatic breast cancer?
All of these circumstances create stress, anger, shock, uncertainty, loss of friendship and family relationships, 50% of men divorce their wives. The list goes on as we lose financial and psychosocial stability. Yet who, besides our physicians and counselors can we really be honest with - without judgement, without trying to “fix” or “help,” but just listen deeply and with curiosity?
What I’ve Learned
As Michael Lerner helped me to understand in what I later realized was a healing circle of two - Michael is one of the founders of Healing Circles Global, along with Diana and Kelly Lindsay, helped me to understand when I was a year into my diagnosis:
As a child I began writing poetry at five or six years old. My mother saved my first pencil written verse and gave it to me when I turned 40.
Whenever trauma overwhelmed me, I’d pick up my pen and notebook. I’m now 56 years old and nearly seven years into my de novo (from the beginning) diagnosis of stage 4 metastatic breast cancer with mets to my bones, liver and peritoneum. It’s hormone receptor positive, for which thankfully research has developed many “lines” of treatment, but I’m on my sixth line, including six months on IV chemo. There’s only one more left after the one I’m on no longer works. But that’s the life someone with MBC leads,, at least for now. But I never let go of hope. Nor does the medical team, of which I am the ultimate decision maker. It’s a community of medical professionals who listen and who give me all my options. We decide together what’s best for me.
Yet, after I was diagnosed on March 25. 2015 I had to find a new path to walk, mostly alone or so I thought. I reached out to find online communities I’d never knew existed. People diagnosed with MBC and other cancers. I began to write a blog nearly immediately after diagnosis to share my experiences with others who I thought could benefit from my own. The blogging community led me to social media, which I’d already used in my now retired professional career in high tech. From there I was led to patient advocacy via Living Beyond Breast Cancer, as a Buddy for Sharsheret, co-leading support groups, and doing many podcast interviews on therapeutic writing and it’s psychosocial benefits. It’s a busy life.
So many communities opened their arms and all I had to do was reach out my own. There’s no turning back when you receive a terminal cancer diagnosis. I’ve lost so much that once made my life what it was. But instead of tossing it all away and focusing on the “end,” I found new beginnings where I’d started as a young girl. And my gift keeps giving back into that community in ways that have also paid off in my life.
One needn’t be a poet or an essayist to write through their emotions and experiences. It could just mean keeping a journal that one writes down one thing they found surprised or made them happy that day. After a few weeks of writing for five minutes suddenly one realizes after reviewing their journal that despite a terminal cancer diagnosis we can still so many things in this life to be grateful for.
Many of the poems here are dedicated to people who died from cancer or who are still living but inspired me to write because of the way in which they moved me to be grateful. The first one is dedicated to a man who spent his life helping people with a cancer diagnosis to heal themselves emotionally after the fateful words, “I’m sorry but…”
He said to me after I woefully looked at him and said, “I don’t have a path anymore! When I look down I don’t see where to put my foot to move forward – I see nothing.”
He replied, “Ilene, you’re a writer. Call yourself a writer because that’s what you are.” Such simple advice.
For your information and for finding out more of the kinds of healing circles, including cancer, caregiving, death and dying, for men, for women, and many more, here’s a great link that describes healing circles far better than I https://healingcirclesglobal.org/calling-a-circle/what-is-a-healing-circle/
Poetry’s My Love Language
And finally a poem that describes what I feel after I’ve concluded a healing circle - be it one I host for metastatic breast cancer patients or the ones I co-host on cancer and on writing for healing circles global - and the ones I attend on cancer, and have attended throughout Covid keeping me from becoming unnecessarily isolated using zoom. We gather and I’ve learnt so much from the cohosts of these circles.
I close with a poem because that’s how I can best express myself, to you dear readers. And if you’ve come this far I thank you for reading. Please feel free to reach out to me via my blog at Https://cancerbus.com/ or via Twitter @ilenealizah.
Blessings and deep peace to all.
Live with Your Questions
Live quietly with your questions.
Sit still for a spell,
just for now, put yesterday away
with well-deserved tenderness.
Nurture these moments,
like newborns, feed and
swaddle them. Rock them
in the sweet
rhythm of their
slumbering breath.
In this, the only moment
Ever to become infinity’s
reply to the direction of your green
green path, a path
with new ways to go —
some trodden upon, some unknown.
You think of “Nothing”
much like that infant you
carefully once loved.
Why rush to grow?
Time grows long regardless of your
prodding for politeness or
for prodigy. For they,
in minutes of stillness
will grow into our hours.
The answers reveal
themselves only when you’ve
Forgotten to ask “why?”
These questions over
the course of life become like
gems beaded onto a
necklace, weighing you —
Bowing you down
In prayer or in repentance.
Break its clasp
And relinquish all the
heaviness to the ground.
Lift your head up and
open your mouth.
Catch the blessed rain
on your tongue.
What’s keeping you silent as your
Lungs feed on the breath of freedom?
Cut the stones weight from round
Your neck.
Breathe in time with
your child
who holds no answers.
Not even the coolness
of this second is
hindered by what should be and
will never be again.
The answers you
came here to gather
when you were still innocent,
in your open
hands to grab secretly
Like flowers from
Neighboring garden
whose labors
were never yours to own.
SurvivingBreastCancer.org Resources & Support:
