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Using Ritual to Navigate ALS Transitions
THE POWER OF RITUAL — My Transition to Wheelchair Life
I was diagnosed with sporadic ALS on July 17, 2018, and I’m sure, like many of you, I was in shock for a few months. We quickly organized a trip to Italy in October, and though I was still able to walk and even hike slowly, I met my first challenge when I couldn’t cross a creek safely; I sat down on the ground and had a good cry while I encouraged my husband to continue on the trail. Hiking was my main form of exercise and spiritual connection, and it felt overwhelming to lose that. I soon realized that living with ALS is an ongoing journey facing loss of function and the resulting experience of grief.
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 started writing Odes to my Major Muscle Groups, statements of gratitude for what they’ve enabled me to do for so long. 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
This understanding has encouraged me to pay more attention to what my body is still capable of doing, being conscious that I may lose that function in the future. It has developed into a gratitude practice (when I remember!) – “Oh good, I can still walk if I walk on flat surfaces, then if I use my hiking pole, then if I use my walker/rollator.
Even with this knowing what the future holds, facing that moment when it arrives, is a starkly different experience. One day I was using my walker when suddenly both legs gave way; my body wilted to the ground (no injuries luckily) 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 navigate this profound transition.
I needed 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 in the world.
Creating the ritual
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.With assistance, I took my last walking steps out the living room door onto the outside deck. I found a prayer someone else had written that deeply resonated with me:
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 live a fulfilling life.I then chose a few of the most meaningful of my “Odes to My Leg muscles”, giving gratitude for ways my legs had provided physical support as well as the emotional/spiritual gifts from those experiences during my 68 years of life (e.g. getting into/out of my favorite hot springs, hours spent gardening as a spiritual practice, trekking across Nepal, driving my manual shift car along the California coast). Lots of tears here. I then spent 10 minutes appreciating the view and tending to my tomato and basil plants for the last time.
I re-entered my house and with assistance made a large circle around my power chair, blessing it. On a wildflower hike last year, someone approaching us on the trail, exclaimed “What a beautiful chariot (referring to my manual wheelchair) you have!” 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 holy chariot. I used dried sage I had collected from a nearby nature area and recited something I had written:
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 to offer blessings as well; they were beautiful and their blessings helped me not feel as alone.
I climbed into my wheelchair and made myself comfortable.
Since the ritual, I’ve been deepening my relationship with my chariot – 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. The ritual helped me transition into this new stage of my life, in this physical body. Now a few months later, I’m inviting close friends to help me decide what to call my chariot and how to decorate her!!
I’m so grateful for the way that ritual has helped me through this transition, and I know that I will return to ritual throughout this disease’s progression. It allowed me to be in control of how I made this change, lessening the feelings of helplessness and powerlessness. It provided me a channel to express and honor the sadness and grief I was feeling. And by including my partner and a close circle of friends, I felt supported moving forward.
I offer this with the hope that it provides inspiration for others to create healing rituals for difficult ALS transitions.
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8 Replies
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Ilana,
Thank you for sharing your rituals for coping with a terrible disease. Instead of being angry at my legs for not working, honor them for all they have done for me! Any situation can be flipped to another perspective.
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Yes, thank you Ilana for sharing your unique strategy. I am sure this will inspire others to do the same 🙂
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Thanks for sharing your experiences in making this journey a spiritual path. I’m really glad it works for you and that you look for ways to reframe what you’re going through. Can you share some of your Odes??
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Thank you Ilana for sharing
It gives me Some hope for the future in regards to handling physical decline
Mary Ann -
hi Mary,
Glad you found it helpful; it’s definitely a journey.
Best,
Ilana
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Marianne –
I was initially feeling like I was drowning in sadness; I’m really learning and appreciating how powerful a gratitude practice is even as I live with this disease. What I hadn’t expected were the wonderful memories over my life that washed over me! I hadn’t thought about how much I loved roller skating when I was young.
Blessing,
Ilana
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Hi Debra –
Happy to share some of my Odes with you; they brought back wonderful memories I hadn’t thought about in a long time:
- Jump roping
- Tending my garden
- Getting into and out of hot springs
- Tide pooling
- Dancing
- Camping and sleeping on the ground
- Hiking up Mt. Sinai
Blessings,
Ilana
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In March of 2020 at the age of 75 I was diagnosed with ALS after months of tests and exams by four different specialists. I had been a very healthy, active physically fit man all my life, so much so that my primary doctor always marveled that I was the healthiest 75 year-old patient she ever met. The disease came on overnight, when awoke and noticed a slight speaking problem, not slurring speech, but rather slight difficulty pronouncing certain words. Months later, when I was given the diagnosis, my wife immediately cried, devastated beyond words, and while I felt so bad for her I myself did not experience a similar response. Instead, I immediately accepted the diagnoses and knew that I was in for a long and difficult journey until the end. It was hard to take, but I knew that grief and sadness would do nothing to change the situation and would only make things worse as the days, weeks and months progressed (I was given 24 to 36 months, tops). The fact that my neurologist explained that there are no reasonably effective treatment options available only made me determined to make the most of every day I have left with my loving wife. At the time I could walk and talk reasonably well, but within weeks the disease proceeded on a rapid pace. Today I cannot speak other than utter a few meaningless sounds, I can eat some solid food (must be soft and not dry) but it’s difficult to swallow and very messy. I need a cane to move about, but I can tell that I am only a few weeks from a wheelchair, something I am not looking forward to but know it has to be. I also know that I am only a few weeks away from needing a fulltime caregiver as I’m barely able to bathe or groom myself. My wife shaved me for the first time this morning with an electric shaver (not bad!). Thank God my loving, caring wife can help me get through it all and make life, such as it is, as comfortable as possible under the circumstances. I do not feel sadness, self-pity or experience any depression because I know none of it will help in any way. I regret that I can no longer drive my sports car convertible around this beautiful Island (Oahu, Hawaii) or swim in the awesome beach across the street, but I relish the many wonderful moments of the past with my wife when I was healthy and physically fit. I have no desire to try various experimental treatments or take what few medical options are out there, but rather I want to just ride it out and hopefully pass away peacefully in my sleep when my time is up. Terminal means terminal, and I fully accept it. I have settled all personal obligations, leaving my wife in reasonably good financial status, and have made preparations for my funeral. I understand that everyone who is diagnosed with any terminal disease finds their own way to cope with it and that’s as it should be. Since there is no reasonably effective way to treat, cure or even slow down ALS, I accept it for what it is and am thankful for the wonderful life I’ve lived. God bless.
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