One of the beautiful arrangements of my teaching schedule this semester, is that I teach ‘Soul: Intro to Kabbalah’ of the Year 1 curriculum immediately before ‘Masks: Who are you?’, its parallel in the second year curriculum. I deeply appreciate the themes that are woven between the classes, and the timeliness of these curricula for me.
This week we were exploring Light in Darkness, in ‘Soul’ and the Masks of our Bodies, in ‘Who are You’.
In Soul we looked at Ohr/ Light and Ohr/ Skin… We explored “enclothements” of light and the Kabbalistic interpretation of the light gazing upon the wicked of the world and hiding itself away (Zohar 1:30b). We discussed the ways we bring light into our lives, and how creating light through candle lighting- as ritual or as a routine- can shift the energy of a home. We explored together- how do we create light in darkness?
My son, Koby (z”l), was captivated by the concept of finding light in the darkness when we studied Kabbalah together. In fact, it became his favorite message, “There is always light in darkness.”
My sweet child, who was developing typically until he was diagnosed with his brain tumor, knew more than most people about finding light in darkness. He knew what it was to be a prisoner in his own body- to have to re-learn how to breathe on his own, eat, walk, and talk again. Five months after diagnosis, he returned to 6th grade part-time, in order to continue his education and be with his friends and DJDS community. Koby learned to dance again, to drum with one hand, to sing with gusto in our community- and with anyone who invited him to sing.
In our Masks class, we watched videos of two young women who were born with disabilities but in the end did not define them.
As Linda Sandin writes, in I am not My Body:
I am my words, my ideas, my actions. I am filled with love, humor, ambition, and intelligence. This I believe: I am your fellow human being and, like you, I am much more than a body.
These words would have resonated for Koby. He knew that we’re all abled in different ways. And also, that we’re all disabled in different ways. He found ways to embrace his abilities- when the rest of the world was mourning what wasn’t. He spoke to the House of Representatives, he rode in race cars, met with the governor, went to concerts, schmoozed with celebrities at Red Rocks and served as a teacher to countless individuals and communities.
Koby was not his body. He was prisoner to his body. But he was not his body.
In fact, I believe, that his disabilities removed some of the masks that we would probably have seen develop into his pre-teen years. Instead, we saw raw sweetness and vulnerability. We saw him fight for resilience, and we saw him rage. We saw maturity that was well beyond his years. We saw him sing to nurses while they accessed his port. We saw him engage with people of all ages. To bear witness to Koby, was to bear witness to his light. And to see his light, brightened the light in all of us.
Koby had a rendition of Leonard Cohen’s Halleluyah, blended with the Hebrew verses of Psalm 150, that became his trademark. He sang brazenly. He sang with de-light. He sang beyond his body, he sang beyond his abilities and his disabilities. When Koby sang, we saw his Ohr/light, shine so brightly.
His body betrayed him, but his soul just shone. He shed the mask of a kid with a brain tumor, and all of our hearts rose to the heavens when we heard his voice and prayer.
This Wednesday, the third of the Hebrew month of Shevat- which falls on January 29 this year- we will mark the second yahrzeit of Koby’s passing. I can’t begin to tell you how much imagining the rest of my life without him hurts. I hold his light closely and connect to it wherever I can.
Even though his body is gone, Koby’s holy and broken Halleluyah remains.
May his memory be for a blessing.