Although I cannot walk with my legs, I can still move forward.
When I was diagnosed with ALS in July 2018, I knew that the disease progression would lead to walking more slowly and for shorter periods of time, then needing the use of a hiking pole (much easier for me to accept than a cane), then a walker/rollator, and ultimately I would end up in a power wheelchair when my legs would be too weak to hold me up.
Knowing what the future holds and then facing that moment when it arrives are starkly different experiences. One day I was using my walker when suddenly both legs gave way; my body wilted to the ground (no injuries) and my spirit dissolved into tears facing the new reality. Given that ALS symptoms can be sporadic, I knew I had a little time to reflect on how I wanted to face and accept this new stage. Throughout my life, rituals have helped me make transitions (creating a new home, ending a relationship, getting married, starting a new job) more consciously and (I hope) gracefully. I decided to create a ritual to help me cross this profound transition.
I wanted the ritual to encompass the full range of emotions I was experiencing – from acknowledging all the gifts my legs have given me till now, the grief of losing leg function and independence, as well as appreciation that there’s a technological solution that will allow me to stay pretty engaged and independent with the world.
Over the past two years, I’ve realized that balancing a loss of function while also acknowledging the blessings from those same muscles for 66 years has helped me move through the grieving process more fully and hold the loss more gracefully. About a year ago I remembered the Jewish tradition of saying 100 berakhot (blessings) per day, which inspired me to write "100 Odes to my Major Muscle Groups." It’s been an amazing process of unearthing wonderful memories and seeing patterns that have stretched over decades of my life, as well as a positive way to do a life review facing a terminal diagnosis. I chose 18 of the most meaningful Odes for this ritual (e.g., Climbing Masada in the dark and seeing the moonset and sunrise simultaneously at the peak, involvement in non-violent civil disobedience actions, getting into/out of my favorite hot springs, hours spent gardening as a spiritual practice, trekking across Nepal, driving my manual car along the California coast).
I wanted to consciously choose and be aware of where and how I took my final steps. I chose the deck adjacent to our living room, which faces west to beautiful sunsets, and where we grow our tomatoes and basil in the summer. I will still be able to look out the sliding door, but it’s too narrow for my wheelchair.
On a wildflower hike last year, someone approaching us on the trail, exclaimed, “What a beautiful chariot you have!” (referring to my manual wheelchair). I loved that re-frame, and given that I’ll be spending up to 16–17 hours/day in my power wheelchair, I’ve chosen to think of it as my merkavah/chariot – referring to Ezekiel’s vision. I hope to be held by the Divine Spirit as I travel with it.
I began the ritual with this reading:
Source of Life, help me realize and graciously accept that although I cannot walk with my legs, I can still move forward. Open my senses so that I may hear, smell, see, touch, and taste the world around me in new ways. Help me realize the value of being still. Allow me to mourn the loss of my independence, but allow me the courage to know that I do not need to walk with my feet to walk in Your ways.
(adapted from “When the Body Begins to Fail: Reaching Out in Prayer,” by Tamara Arnow on Ritualwell)
With assistance, I took my last walking steps out the living room door onto the outside deck. I gave gratitude for 18 ways my legs had provided physical support as well as the emotional/spiritual gifts from those experiences during my 68 years of life, then spent 10 minutes appreciating the view and tending to my tomato and basil plants for the last time. Lots of tears here.
I re-entered my house and with assistance made a large circle around my power chair, blessing it. I had planned on using myrrh and frankincense incense (as used in the Temple for sanctification), but given Covid, wasn’t able to obtain it. I used dried sage I had collected from a nearby nature area.
I spoke these words:
Into this smoke I release
All energies that do not serve,
All negativity that surrounds,
And all fears that limit.
May being in this chair allow me to stay connected with the world; may I have a renewed sense and experience of self-independence, may all my travels be safe, may I find kind ways of interacting with others, may I find ways to help/support others embarking on a similar journey.
Then I invited a few close people acting as witnesses if they’d like to offer a blessing.
I climbed into my wheelchair and made myself comfortable. I ended the ritual with a revised Shehekheyanu that I had written a year ago.
Barukh Atah Adonay Eloheynu Melekh ha'olam shehekheyanu, v’kiyimanu, u’t’mikhanu
Blessed is the Source of all, Who has brought me to this moment, sustained me and provided support.
Since the ritual, I’ve been deepening my relationship with the wheelchair – learning how fast/slow it responds to my moving the levers, discovering all the ways I can sit in it (straight up, recline), how quickly/slowly I can safely turn corners and go down ramps.
This ritual helped me transition into this new stage of my life, in this physical body; next steps: what to call my throne and how to decorate her!
With hope that this provides inspiration for others to create healing rituals for difficult life transitions.
Ilana Schatz is the Founding Director of Fair Trade Judaica, a nonprofit focused on building a fair trade movement in the Jewish community. She has been active in Jewish social justice for over 30 years, focusing on community economic development, affordable housing, homelessness and community investing. Ilana was a lay spiritual leader at Kehilla Community Synagogue in Oakland, CA, for 15 years.