Thank you to Rabbi Goldberg and Congregation Shir Libeynu for guiding me and allowing me to celebrate my Bat Mitzvah with you all.
Fortune Cookie Tango
Four years ago I had the honour of giving the d’var Torah on Yom Kippur. I talked about my grandmother, my relationship to Judaism and the moments and experiences I revere. Six months later I was diagnosed with advanced stage breast cancer.
I suspected the biopsy would be positive, so I had brought my agenda and showed the nurse practitioners my away dates, all highlighted. They told me, “You’re going to have to cancel all of your plans. You have to put your health first.” I closed my agenda and said nothing.
I wasn’t about to let cancer stop me from living. At the next appointment, I pushed back.
Between breast surgery and chemotherapy appointments, I took a transatlantic cruise with my daughter and five dear friends. I presented a paper at a meeting in L.A. and then another at a World Health Organization meeting in Gothenburg, Sweden.
When I returned to Canada, my medical oncologist informed me of an incidental finding on a full spine MRI: I had a critical tumour measuring 2.4cm and taking up most of the space in my spinal canal, compressing my spinal cord at the first cervical vertebrae.
My chemotherapy was interrupted for urgent surgery. Without the surgery, the tumour would have eventually stopped my ability to breathe or my heart to beat.
Spinal cord surgery makes cancer seem small.
As the months and years passed, every visit to one of my medical teams brought more bad news: my breast pathology was an outlier and wholly unexpected; it was suggested that I may be chemo-resistant. Next, I was told that my peripheral nerves would not regenerate, as the doctors originally assured me.
The central nervous system was involved, and the spinal cord or spinal nerve was permanently damaged. There is no treatment or cure. I use a cane to keep from falling, because I have no proprioception.
In July last year, the neuropathy, or lack of sensation, started progressing. In spite of keeping active and exercising, I continue to lose strength. My muscles are not responding to my nerves.
Living with two life-threatening diagnoses is a privilege: I get to choose how I spend my time, who I spend it with, and how I use the energy that I have available.
Like any normal 51-year-old single woman, all I want to do is drink and dance and date beautiful men.
Sadly, I can’t dance anymore. The muscles in my feet atrophied in 2014, and all of the joints in my feet are inflamed.
My daily goals are simple:
Put my legs through the right holes in my underwear
Walk out of the house with matching earrings
Don’t piss myself. Or worse.
And don’t fall.
In spite of these challenges, I manage to hold on to the things that bring joyous experience into my life.
No one gets a free pass to a healthy life. It’s a crap shoot, so my number one job is to live a good life.
This sermon, and my belated Bat Mitzvah, is about celebrating, because I chose to keep living out loud, in spite of the inevitable, and it’s also about a fortune cookie from a few weeks ago: A surprise announcement will free you.
I have yet to receive the surprise announcement, yet the idea of being set free appealed to me. However, I was more interested in claiming agency of this future transition to freedom.
I wanted to set myself free.
Recently, I experienced what I call a spiritual transition from concern for my future to a safer and more comfortable place: the present. I have surrendered my worries of the future and take comfort in the moments of pleasure and joy I experience with my friends and family or on my own.
A few days ago, I immersed myself in a Mikvah Bath with Rabbi Goldberg and several friends present. I had three intentions, or meditations, for the Mikvah ritual.
The first intention was gratitude.
I am grateful for the love of so many people, most especially my children, Emily and Solomon.
There are 24 members of my immediate family, from ages 1 to 79. That’s a lot of love in one family.
My friends, who are like family, create an impenetrable bubble of love.
A shout out to Jim Summers, Harold Van Johnson and Steve Roy, who have been uncles to my children.
I am grateful for my abilities, and for my communities. And I’m grateful for the men I’ve loved and left, the men loved and lost, and for the men who keep me smiling.
I am also grateful for a friend who decided to teach me tango even after the neuropathy progressed. When he arrived for the first lesson, I warned him that my condition had changed. “I know,” he said. “I’m going to teach you tango until you can’t walk.”
And he has kept his word. I’ve been learning tango for a year. And in the evening when my feet are on fire, I don’t mind. Tango is worth the pain.
I used to think that what I found holy was the energy created by two or more people, the moments that are never repeated, but remembered.
Now I understand that life is about relationships. It’s all we have. Nothing else matters. We can all choose either to nurture our relationships or neglect them, and we live with the consequences of our choices.
The second intention of the Mikvah ritual was acceptance.
Cancer is not a journey—it’s an acid trip. A surprise at every turn.
In her article entitled Cancer is Not a Journey, Jane Cawthorne xox wrote cancer is “a kidnapping. A hijacking.”
Survivorship is a crap shoot without meritocracy.
Spinal cord injury is also a kidnapping or hijacking. There is no predictable pattern of progression.
My family physician of nearly 20 years, Debbie Honickman, told me early on that I needed to work on the acceptance piece.
That was a tall order! Yes, I was told that central neuropathy tended to progress, but I dismissed the possibility. That was for older patients who weren’t active. I never thought it would happen to me.
My psychotherapist Barbara Brown worked with me for two years before I finally surrendered. I surrendered to the futility of worrying about the future, of wondering what the next stage will bring. It’s a waste of time.
After three years of news that kept getting worse, I found peace in the unknowing: of tomorrow, or next year. I am aspiring to follow the path of the Buddha and live in the now.
The third intention of the Mikvah ritual was release.
My life has been rich and full. I have no complaints. This is the card I was dealt, and the moments and memories overshadow my challenges.
The acceptance piece led to my release of obligations, expectations and responsibilities.
I am also released from fear—because I chose to.
I have freed myself. I will continue to live a good life until I can’t.
My belated Bat Mitzvah was my father’s idea. The importance of the event clearly meant more to him than it did to me. However, I liked the idea of formalizing my place in the Jewish community.
My father asked if I was going to do a Mikvah Bath, something I had seen only in movies. And then Rabbi Goldberg asked as well. I was excited by the idea but did not know how I would feel.
Rabbi Goldberg guided me through the preparation. We worked together on my intentions or meditations to conform to what felt meaningful and authentic for me.
I descended into the warm water. My guests—Harriet Eisenkraft, Rosemary Frei, Barbara Brown and Gary Klein (in another room, able to hear but not see)—were present to witness and affirm the ritual. By candlelight, they spoke, they sang, they watched me immerse myself three times, and I cried.
My tears ran into the living rainwater of the Mikvah Bath.