When we can’t find solutions, we can still share sorrow

Three years after my husband Todd’s ALS diagnosis, a friend put me in touch with another family who had been dealing with the disease for about a year. I listened as the adult daughter told me how her mom, who had ALS, couldn’t move at all, and how her dad was overwhelmed by caregiving.

I was struggling myself and felt like I had nothing to offer this family, even though we were two years ahead of them in our ALS timeline. How was I supposed to comfort them when I was so sad and overwhelmed by my own life?

“I don’t have any answers — just questions,” I wrote in my journal. “But I guess my heart is more open to others who are suffering.”

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Around that time, I read about Rick Warren, author of “The Purpose Driven Life,” losing his son to suicide. “No one is immune to heartbreak,” I wrote. “Not even the guy who wrote ‘The Purpose Driven Life,’ but he puts his brokenness forward, and it makes him more real.” I noticed that I was becoming more willing to sit with people who were grieving or carrying the heaviness of life, even when I didn’t know what to say.

Twelve years have passed since then, and I still have more questions than answers when it comes to facing suffering.

Shared grief

I’ve learned practical things, such as the different equipment that is useful at each stage of ALS. Todd and I made a YouTube channel titled “ALS 411” where we share some of these things. And I often point those new to the disease to various videos as families try to figure out how to practically manage disease progression.

If I could speak to that family now, I could share practical tips if needed. I’d also tell them to try to get help with caregiving so it isn’t all on the dad — but I also know how complicated that advice is. As ALS progresses and time marches on, helpers often fade away. In the United States, Medicare offers few caregiving hours, leaving many families on their own to fundraise to hire help or shoulder 24/7 care without enough support. And even when funds are available, finding people to hire can be incredibly difficult.

But when it comes to the grief that accompanies each phase of this disease, I don’t have much to offer except agreement. It is a hard disease. I once thought enduring something this hard might make me stronger. I wanted to be able to overcome hardship. Instead, it has broken me, but I also find that my heart is softer. Comfort doesn’t always come from solutions. Sometimes it comes from sharing sorrow over situations that cannot be fixed.

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.