Practicing radical acceptance is difficult for me in life with ALS

In a recent episode of the “Hidden Brain” podcast, behavioral scientist Dave Evans discussed radical acceptance. He described his 69-year-old wife, Claudia, receiving a terminal cancer diagnosis and how they chose to skip the denial, anger, and depression that often come with grief. They moved straight to acceptance, allowing them to live well for her remaining nine months.

Wow, I thought. That wasn’t my experience when my husband, Todd, was diagnosed with ALS. Nearly 16 years later, I still don’t feel like I’m always in that place of acceptance. Although I find small joys in our life, at times I still feel angry that this is our reality, especially when I’m exhausted or we don’t have enough nighttime caregiving help. And I feel sad watching Todd’s health continue to decline.

One thing that helped the Evanses was that they had already been through hard things and had worked on being good accepters. They both had been through failed marriages and had raised a son with bipolar disorder. And at 69, Claudia felt she had lived a full life.

Recommended Reading

June 13, 2025 Columns by Juliet Taylor

What I can’t accept about ALS, despite years of processing it

In contrast, I was 32 with a 9-month-old and a 4-year-old when my 39-year-old husband was diagnosed with ALS. It was the first really hard, unexpected grief I had faced. I didn’t feel like Todd had been given the opportunity to live a full life, and I didn’t want to become a widow raising two young children alone.

So I fought against our new reality. I pleaded with and screamed at God. I scoured the internet for anything that might slow the disease or stop its progression.

However, Todd came to terms with the diagnosis and was determined to make the most of the time he had. In our memoir, “Heavy,” we described our first year with ALS. Todd wrote, “I have time to build memories, to live well. My children will see a man who lived to his last breath. Though I have limited physical strength, I can demonstrate mental toughness. So much of life is out of my control, except for my attitude. Shouldn’t this be how we all live, whether we have six years or sixty? I’ve decided to live well.”

We shared parts of “Heavy” at an ALS support group, each of us reading our own words. The social worker who led the group said it was interesting to see our different levels of acceptance.

“I want to fight this disease,” I told my therapist months after Todd’s diagnosis. “I want to try alternative therapies that won’t do harm.”

“If you’re fighting, then how do you define winning?” he asked.

I pondered the question. “Fighting is winning,” I said. “We win if we don’t give up.”

I don’t know if any of the supplements Todd took helped slow his progression, but some of them did make him feel better.

Continuing the fight

I have fought for equipment and services. When Todd’s head array was denied by the wheelchair company, I called their headquarters and explained that it was becoming dangerous for Todd to drive with a joystick and that someone could get hurt. They ordered the head array.

A few years into the disease, I tried to get Todd into the NurOwn clinical trial, but he was rejected because he had ALS for too long. After hearing that some people with ALS showed improvement in the trial, I wrote letters advocating for the U.S. Food and Drug Administration to approve NurOwn as a treatment. That hasn’t happened yet, but I believe it was, and still is, worth fighting for.

I still look for ways to make caregiving easier and safer. If I were more inclined toward acceptance, I might accept the strain on my wrists and back as part of being a spouse caregiver. But it’s better if I can find ways to care for Todd without injuring myself.

He’s needed so many manual assist coughs lately that my wrists were getting sore. I asked a medical professional for ideas and searched online, but I couldn’t find a solution. So I made one — I stack an empty Gatorade powder canister and a throw pillow over a small hardcover book on his belly, and then lean in with my torso. No more strained wrists.

I’ve seen how differently people respond to ALS, both those with the disease and their spouse caregivers. Those who have radical acceptance, like Todd, seem to struggle less emotionally. But it’s often those of us who struggle with acceptance who question the status quo and advocate for resources and change.

When I told Todd about the podcast, he said, “Successful people need a certain level of disagreeableness — which you have in spades.” He smiled.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.