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?
Jack · October 17, 2018 at 2:29 pm
Such a heart-felt ,incredibly candid history Melanie has given. My full respect & admiration goes to her!
Ginny Sims · October 17, 2018 at 3:16 pm
Thank you, AND…welcome, Melanie!
Melanie Gruenwald · October 17, 2018 at 9:55 pm
Lee Weisbard · October 17, 2018 at 3:30 pm
You are always so real and authentic I love reading what you have to say
Melanie Gruenwald · October 17, 2018 at 9:55 pm
Robert O Corn · October 17, 2018 at 4:36 pm
Melanie, I am so in awe of your spirit, courage and openess. There are so many outstanding qualities and character traits which you are modeling for all others. Thank you.
This is a beautiful message for all survivors. Thank you Melanie for sharing · October 17, 2018 at 4:51 pm
This is a beautiful message for all survivors. Thank you Melanie for sharing
Rhonda Kaye · October 18, 2018 at 7:19 am
The mask continues- as no one else can truly understand the depths of pain – life forever changed, whether breast cancer, other body changes caused by medical issues, or a traumatic event. If people understand you have to wear that mask, some might actually”hear” you when they ask how you are doing. So many ask and then give their own answer-one “they” can handle. We can all do better with our empathy. Thank you for sharing what so many live with.
Anita Khaldy Kehmeier · October 20, 2018 at 8:36 pm
Let this darkness be a bell tower,
and you the bell.
As you ring, what batters you becomes your strength. Rainer Rilke.
Roseann Pascale · October 21, 2018 at 5:24 pm
A question so full of meaning. What is Self? Who sees the body? Who watches it all change. Thank you for sharing your vulnerability and experience so honestly with us. Much love <3
Anita Khaldy Kehmeier · November 1, 2018 at 7:49 pm
Dear Melanie – I want to share with you a book by Mirabai Starr – I met her at the Sand conference in CA. I too have had so many challenges to face. Mirabai nails it in her book – “Caravan of no despair”…I have added the synopsis of the book for you to read and get nourishment from. I too was writhing in agony, over the dangerous illness of my son, and the callousness for my health insurance company who would pay zero of the $120,000 yearly medical bill to keep my son alive… She really speaks to the depth of the anguish I felt and the resulting PTSD that I live with…On the day her first book came out-a new translation of Dark Night of the Soul by Saint John of the Cross-Mirabai Starr’s daughter, Jenny, was killed in a car accident. “My spiritual life began the day my daughter died,” writes Mirabai. Even with decades of spiritual practice and a deep immersion in the greatest mystical texts, she found herself utterly unprepared for “my most powerful catalyst for transformation, my fiercest and most compassionate teacher.”With Caravan of No Despair, Mirabai shares an irreverent, uplifting, and intimate memoir of her extraordinary life journey. Through the many twists and turns of her life-including a tangled relationship with a charlatan-guru, her unexpected connection with the great Christian mystics, and the loss of her daughter-Mirabai finds the courage to remain open and defenseless before the mystery of the divine. “Tragedy and trauma are not guarantees for a transformational spiritual experience,” writes Mirabai Starr, “but they are opportunities. They are invitations to sit in the fire and allow it to transfigure us.”
On the day her fist book came out?a new translation ofDark Night of the Soul by Saint John of the Cross?Mirabai Starr?s daughter, Jenny, was killed in a car accident. ?My spiritual life began the day my daughter died,? writes Mirabai. Even with decades of spiritual practice and a deep immersion in the greatest mystical texts, she found herself utterly unprepared for ?my most powerful catalyst for transformation, my fiercest and most compassionate teacher.?
With Caravan of No Despair, Mirabai shares an irreverent, uplifting, and intimate memoir of her extraordinary life journey Through the many twists and turns of her life?including a tangled relationship with a charlatan-guru, her unexpected connection with the great Christian mystics, and the loss of her daughter?Mirabai fids the courage to remain open and defenseless before the mystery of the divine. ?Tragedy and trauma are not guarantees for a transformational spiritual experience,? writes Mirabai Starr, ?but they are opportunities. They are invitations to sit in the fie and allow it to transfigure us.?