Whose shoulders do you stand on while living with illness?

If you’ve been reading my blog, you know that  I explore my thoughts and experiences of living with illness and the impact it has on a person’s life — professional and personal.  That said, I’ve decided to push that boundary today and share something that I wrote in the context of my religious life. I do this in the hope that the message in this piece might resonate with you and help if you wrestle with similar challenges.

First, let me give you some background so you can understand where this comes from. Since the start of the Pandemic, I’ve attended a daily Jewish morning service. According to the Jewish calendar, we are in the month of Elul, the month prior to the Jewish New Year that starts this year on Sept. 26.  Elul is a time of introspection and taking stock. It is referred to as a time for “an accounting of the soul”.  That’s my cuppa’ tea.

Recently, I was asked to talk about what this time of ‘accounting of the soul’  means to me. I found myself gravitating to a dominant theme in my life, living with chronically difficult health.

In researching Elul, I came across the pamphlet, “On the Shoulders“, Jewels of Elul, published by the Pico Union Project.  Thirty two very short essays by a wide range of folks in the Jewish community about the shoulders that lifted them up. The editor wrote, “I hope these Jewels motivate you to look back, look in, and look forward.  It’s by telling and listening to stories that we remember how we got here, and who we are.”

Reading these essays led me to think about my own story. I remembered an event when I was 14.  I was packing my trunk to leave for a Teen Tour the next week when my mother came to my bedroom. She told me that she was very sorry, but I couldn’t go. The trip had been her idea, but now my parents realized they couldn’t afford to send me.

Looking back, what strikes me is that I was only slightly surprised. On reflection, my parents never made choices while thinking about the future ramifications.

As their child, my behavior mirrored theirs. I pursued what came into my orbit without thought to the consequences. I recall organizing a student walk-out in high school when a teacher whom I respected highly asked me if I’d thought about how my actions could affect my college applications. It was the first time anyone suggested this idea. It didn’t change my actions but her words stayed with me.

I remember a similar experience during my 1st multiple sclerosis event. I was 29, had lost vision in one eye, and was unable to walk for 3 long months. When my neurologist, who was at least twice my age and nearing the end of his career, gave me the diagnosis, he said, “You know, Rosalind, you can’t see it now but this is an opportunity. You have the chance to learn to smell the roses early in your life. You get to realize what really matters to you and make choices based on that. For most people, this doesn’t happen until they’re old and can only look back with regret.” 

Wise words but I had no idea what he was talking about.  I went on reacting and responding to what was in right front of me, believing that to be enough.

In my mid 40’s, struggling mightily with a 2nd autoimmune disease, ulcerative colitis, I was unable to take care of myself or my family. I had no choice but to leave the workforce.I was sad and angry. I could see that being fearless wasn’t cutting it. The choices I made on a daily basis had serious ramifications on my family and all whom I loved. But I was at a loss. How could I think about this any way — other than denial?

Luckily, a wise therapist helped me to shift my thinking and build on my resources. I found teachers who spoke of the wisdom that came from setting intention, and I soaked it up. I studied techniques and strategies to help me create a working relationship between my mind, body, and soul.

Through this effort, I developed the capacity to redirect my focus from going into immediate action toward making the best possible choices, choices based on what mattered to me and my capacity. I developed this mantra:  I can’t control my body but I can take charge where it is possible. Over time, with trial and error, I gently adapted this to all the aspects of my life. I knew it was the only way I could hope to attain the life I wanted to live.

I found mentors who helped me create work that I could do and that continues to motivate me daily, no matter how sick I feel. I learned to think carefully about my choices, to prioritize, and to say no to myself and others. Yes, I miss the mark – – often. And, when I do, I try to practice compassion for myself. It’s a lot of work.

So what does this have to do with Elul? A few years ago, I decided to set an intention for my wellbeing at the Jewish New Year.  More recently, Elul has become a month of exploring and practicing intention for me.

In the words of one of my social justice mentors, Rabbi David Jaffe, “One of the most important things one can do for their spiritual health is Just Stop. Stopping is a radical act of freedom and is essential to the spiritual practice of Elul.  As we work to create a more just, liberated world, the practice of stopping reminds us of the world we are trying to birth”.
 
And so, this Elul, with the prospect of the birth of my 1st grandchild in a few months, I set this intention. I will allow myself to STOP, to NOTICE the fears of what I won’t be able to physically do for her – and to ALLOW myself to remember that I can and will be there to carry her (figuratively) on my shoulders.