Dear KE Community:
I can think of no better way than to introduce our newest teacher than presenting her in her own words. I have had the pleasure of studying with and mentoring her and learning from her courage and openness.
with admiration, David
In Kabbalah this semester, we are studying “Masks”. What masks do we wear in our lives? And do we wear our masks or do they wear us…?
This is the second level course to Soul, Level 1, which I am currently teaching. It has been terrific to be so immersed in the first year curriculum, preparing for each class, reviewing texts and referencing sources. Pondering themes- how I relate to them, and how I can make them alive for others? And then, once each week, I get to peer ahead, and engage in Soul, Level 2: Masks.
In this week of the Mask class (Who Are You?), we discussed people with body deformities or differences and addressed how their bodies are masks for them. We watched a short video of people with physical differences who elected to have mannequins made in their likenesses to be placed on display in a storefront window- dressed to the 9s. This appeared to be a profound experience for them as they viewed and touched their mannequin-bodies. It made me wonder if they ever viewed their full physical selves before, especially seeing their bodies as beautiful?
My thoughts immediately went to our son, Koby- who was a healthy active 11 year old, and who became disabled overnight due to a brain tumor. He lost use of his dominant hand— and needed to re-learn how to walk, speak and eat again. Getting dressed was an issue, as he couldn’t do it independently. He usually wore sweatpants, so he could have dignity, privacy and independence. Fortunately, we were introduced to a non-profit, Runway of Dreams, which promoted lines of adaptive clothing for children with disabilities. Through them, Tommy Hilfiger created a modern, sharp looking line of adaptive clothing, for kids like Koby.
When we ordered “button-down shirts” without buttons, and jeans with velcro instead of zippers and buttons for Koby, he got his swagger back! He felt so good when he could wear nice pants and a sharp top. His whole self was different.
As we continued along the class- and we saw a video of Erica Becker, a young girl with cerebral palsy and Jen Bricker, an athlete born without legs…We discussed body differences, how we see ourselves and our own differences— and though my thoughts first went to Koby- I came back to look at myself.
I was diagnosed with breast cancer in September, 2015 had a mastectomy 10/20/15.
I remember when I lost my hair (Dec 2015), I was angry, because I felt cancer had stolen my femininity. First my breasts, then my hair. I finished chemo in Feb 2016, and a month later, Koby was diagnosed with Glioblastoma. I didn’t have time to come to identify with a ‘survivor’ label, because I transitioned right into Koby’s crisis. Our family’s crisis.
Three years after my mastectomy, and 9 months after losing Koby… It smacked me right in the face. This was a big deal. This was a big deal because my body has transformed and I hadn’t really had time to deal with it. Internally and externally I was changed- I related to myself in a new way- and others related to me differently, too.
I remember one of the first days my hair fell out, I was meeting a friend for coffee, and I didn’t know how to cover it up- or I was trying on this bald “mask”- and she was shocked when she saw me. It was ‘brave’ to be out in public without my hair. But what was the big deal- wearing a hat, you’d notice I was bald, too.
Now, three years later- I have had reconstruction surgery- so everything looks ‘as to be expected’ on the outside- but under the layers, it’s not the same as it was. Not my body, not my hair. I don’t particularly think about it too often. My muscles are different- and I wonder how it affects my ability to do certain exercises… I’m usually low maintenance with my hair, I always have been- wash and go! Sometimes I’m surprised when I see its craziness in a reflection.
I was getting so triggered over this train of thought in class- I had not spent much time thinking about it before. Thinking about my breast cancer journey…. Thinking about my body as not my body- and do I see it as ‘maimed’ or ‘disfigured’… And what does that even mean for me and my identity?
And then I was thinking about what else made me feel like my heart was in my throat–when I became aware that–Breast cancer was the turning point of my life.
From that point on- ‘something’ was never ‘nothing’. Breast cancer led to Koby’s brain cancer, led to the loss of my oldest child. We were immersed in so much sustained stress, I never had the chance to think about dealing with my breast cancer and my changed body, until now.
And how all of this is connected to our family’s relationship to health. Hannah just came upstairs with a ‘my tummy hurts, I can’t sleep’— and it’s all we can do to treat her with compassion and patience- and not become panicked that something is seriously wrong with her. It’s always like this.
Our turning point. My turning point.
I can grieve it, or I can accept it. Or, yes and…both.
And what does it mean to grieve and accept it? And what is it that I am accepting? This journey? I can live it, but I certainly don’t accept it. Maybe someday I will.
Breast cancer quickly became ‘in the rearview mirror’ once Koby was diagnosed. The only sign of it that I deal with on an ongoing basis, is my hair.
But how have my masks changed as a result of it? And what do these masks represent- is it how I see myself, or how others see me?
“Breast Cancer survivor” isn’t just a label- or buying pink merchandise. Breast cancer survivors have to relearn who they are. Men and women who go through it need to re-examine their sense of identity. This is a physical and emotional journey.
What masks am I choosing to embody? Have I acknowledged all of them that I am wearing?
Or are they wearing me?