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Thoughts from Ron, Spring 2021 Newsletter

I took Madison out for her morning walk the other day and felt the crispness of spring giving way to the warmth of summer. The turning of the seasons made me think about the circle of life, the springtime of youth giving way to the summer of maturity, flowing into the responsibilities of the fall season and circling around to the elder years of witnessing and blessing—the winter of our lives.

For my friends living with ALS, the progression of life has been accelerated. The years associated with the seasons and phases become compressed. Therein lies the mystery of our individual dances here on this earth.

My friends living with ALS sign up for various trials, filled with optimism that this one is “the one” and the nightmare will be over. I’ve been watching this drama unfold for nearly 25 years now, and keep that hope alive as well. There is progress, no doubt, and the search for a cure must continue. And still, the needs of those people whose journey around the hoop of life just got sped way up must still be met in the here and now.

It brings me solace that we restarted our Cultivating Compassion Education Series in March of this year. These weekly gatherings take place under the titles Caregiver to Caregiver, ALS Family and Friends, Men of ALS, Women of ALS and Beyond ALS. These events—online during the pandemic—are one of the ways CCALS serves our community in the here and now, on a heart and soul basis, with deep listening at the core.

I very specifically do not call these gatherings “support groups” because, in my experience, support groups very quickly devolve into advice-giving and a loss of safety and equanimity. There’s a lot of interrupting, among the worst of which is the handing of a tissue to somebody who is crying. What happens when that tissue shows up? The person sits up, wipes away their tears, blows their nose and the emotion is pushed away. No time or space for feelings to naturally emerge, be witnessed and become part of healing. At our gatherings, we want to just let it be. Let the person have their feelings. Let it percolate within you. In that way, another person’s emotions freely expressed can be a lens into our own heart, to the wounds and losses of our own that still need tending.

I love it when caregivers and those living with ALS come together at our gatherings. It provides another chance to view our circumstance through someone else’s lens. Speaking or hearing truths between those being tended to and those doing the tending can be hard to come by. Those truths, spoken by another at one of our gatherings can be incredibly illuminating. Then both carers and those being cared for can leave the gathering a little more open hearted and understanding.

I spoke with a woman the other day who attended our Women of ALS gathering. She said it was the best thing she’d done since her husband’s diagnosis.

“What was it about the gathering that had so much meaning for you?” I asked.

“One of the women living with ALS had such a wise perspective about her situation. I had never thought of it in that way. It helped me understand what my husband is going through in a whole new way.”

The other thing we’ve been doing more of—and I think it’s really important—is providing more council time and deep listening to our staff. I call it caring for the carers. It is something sorely lacking in our healthcare system. How can people be expected to show up fully for others when no one is showing up for them?

Someone said to me the other day, “Ron, what you do is not normal.” What we do—working around death and dying every single day—is not normal. It’s a lot to take on for our staff. One of our senior members put it well the other day when he said, “It’s relentless.” Is it ever. All the more so for those families navigating the twists and turns of ALS every day.

We all need tending. I can’t emphasize it enough. We do not have the resources on our own to handle the relentless demands of ALS. We need each other. We need counselors and therapists and faith leaders. We need to gather together in council and simply be together, open our hearts, bear witness, hold space and listen. We need to relieve ourselves of the burden of having to figure it all out, come up with the perfect answer or play the savior.

Come to our gatherings, friends. Relax and be together in our shared humanity. Take advantage of the refuge we are offering. You may find it feels a little bit like coming home.

In Gratitude,

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