Ritual for Transitioning to Wheelchair

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.  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 brachot (blessings)/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 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:

 

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 Shehechiyanu that I had written a year ago:

 

 

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.