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Ron Note, Fall Newsletter

Not long ago, I was reading a post from a prominent advocate in the world of ALS and he was speaking about his caregiver in terms I found troubling. It was as if he was totally different from his wife because he had ALS, and he was somehow powerless to know her needs or struggles or be of service to her. He was the one in the struggle of a lifetime, not her.

This is a perspective that I find all too common in the dynamic between caregiver and the one who is ill. There is an incredible imbalance often present that diminishes the humanity of both people involved. I speak of this in terms of a couple, married or otherwise, which is usually at the core of the ALS picture. The imbalance I am referring to becomes a one-way circuit, a taker and a giver. What I think we’re looking for—and what I have seen work beautifully well at times over the years—is something with mutuality, going both ways. In the best of circumstances, what emerges can be called a blessing circuit. A blessing circuit is much more like a circle than a straight line.

This idea of a circle, a system in which reciprocity is at the core, is what I would call “co-caring.” One person gives something; the other person receives; he gives something in return, the previous giver receives the gift, and so on. It’s not like a tit for tat or quid pro quo. Sometimes many gifts are given by one person before something returns. When co-caring is in place, a quality of trust and peace can become the norm. A knowing sets in that I too will be cared for, even though I’m doing a lot of giving right now.

I saw this illustrated incredibly well by my good friends, Ron and Mariah, during Mariah’s 37-year journey with ALS. Ron made it clear to Mariah that he would be there for her when he proposed marriage the same day she received the diagnosis. Talk about a statement of caring and love. Along the way on their long journey with ALS, Ron hit some tough patches, times when things got way too hard.

He had thought he could do it all, that he was the rock, and he didn’t have needs and should be able to do everything himself. Mariah was a gestalt therapist, a sensitive and intuitive woman. She could often tell when Ron was struggling, and she went into co-caring mode, encouraging him to be gentle with himself, to show self-compassion when he wasn’t at his best.

She also encouraged her husband to develop his capacity to receive, to really let it sink in when someone affirmed him for the selfless care he was giving, or when she or someone else told him that they loved him. “I learned to really pause in those moments and receive the blessing,” Ron says, “to really let it sink in.”

These acts of self-compassion and co-caring are so very essential for anyone who wants to navigate life with ALS in the most imaginative and joyful way possible. Otherwise, it’s easy to get consumed by the relentless pressure of a sometimes rapidly developing disease. It’s easy to fall into the trap that Ron describes, of feeling like the rock, and we will do it all ourselves. All too often I’ve met a married couple that is going to take this on without any help. They send me on my way and maybe I don’t see them for a couple of years. No question the person living with ALS has changed, but what is often chilling is how devastated the caregiver sometimes is. They have honestly become but a shell of their former selves.

It’s nobody’s fault. There’s nobody to blame. This was just what they were comfortable with and how they had done it before ALS. That’s why I continually harp on the importance of seeing an ALS diagnosis as a challenge to live our lives in a different way. What used to work will not be enough anymore. The go it alone, rugged individualist is a way of being that isn’t capable of addressing what lies ahead. And honestly, there’s little to be gained even if you could.

I’m remembering another couple, Doug and Patty, who did co-caring beautifully during their journey with ALS. Patty is currently on our board, and Doug served with us while he had ALS. He was very determined to care for Patty throughout his illness. I marveled at how he tended to his wife. He made sure she was cared for and had the help and support she needed. He made sure to hang out with his friends, take his time away so she could have her time away from him to do what she wanted to do. That, to me, is love. That’s co-caring.

It’s learning how to consciously carve out those times of solitude for one another, whether it’s taking a walk or a roll in your chair, finding a beautiful spot in nature to be in and observe, or listening to music you love or reading a book or being in a place of prayer. These are the ways we co-care, by encouraging our partners to find these sacred times and places. So too, we look for those special times we can share as well. Sometimes that means leaving the words and ideas behind and simply being together in a place that you both love. Just feel the love flowing between you.

2 Comments

  1. Linda Matchan on October 20, 2022 at 7:47 pm

    Beautiful column, ron.

  2. Bob Rottenberg on November 4, 2022 at 5:02 pm

    Hello Ron —
    This post conjures up memories of the final year in my wife Karla’s journey with ALS — which ended on April 30, 2001.
    We were definitely a team effort, and learned so much from and about each other throughout our life with ALS — and with you.
    I want to share two incidents that speak to your post:
    First, there was s time when Karolka was on her way to the toilet — using the hoist and track system you provided — when her bowels simply let go.
    There we were, surrounded by the outflow of her bowels, me standing there, Karolka suspended on the hoist. We just looked at each other — and in that moment I understood that NOBODY would ever know what we had been through TOGETHER — nobody, perhaps, except G-d. And, I realized, that was absolutely OK: I didn’t need for anyone else to know, because I felt so at peace and so at one with Karolka in that moment.
    What could possibly be better than that?
    And second, as her time to let go came closer, and the activity in the house increased, she turned to me and mouthed this message:
    “After I die, I hope things slow down.”
    What a wonderful woman she was — and we were both so appreciative for all the help and support you provided!
    May you go from success to success, my friend!
    Bob Rottenberg
    Arcata CA

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