A friend offers this caregiver a look back to a time before ALS
We were part of a moms' group back when our college-age children were babies
I caught up with an old friend last weekend. We were in a moms’ group when our now college-age children were just babies. She was visiting our small town because her son goes to college here. It’s hard to believe that we met nearly two decades ago — and harder still to realize that more than 15 of those years have been ones in which my husband, Todd, has lived with ALS.
It was refreshing to get together with a friend whom I had known before Todd was diagnosed. It took me back to lighter times, before I lived under the constant cloud of uncertainty that comes with his progressive, terminal illness.
As we walked along the waterfront, we traded updates on what our kids are doing. Of course, she also asked about Todd’s health, and I filled her in on how he’s been increasingly dependent on his noninvasive ventilator.
My friend told me I’m strong.
“You do what you have to do,” I said. “I don’t feel strong. I feel like I’ve been through the wringer.”
On the far side of the wringer
I don’t know if I have used that idiom before, but it is fitting. The old wringer washers squeezed the water out of clothes as they were fed through the machine. It’s an apt metaphor for a life with a crushing disease like ALS, except that clothes that went through the wringer could be ironed until they looked presentable again. That doesn’t happen with ALS. There’s no return to normal, or even a settling into a new normal, because the decline is ongoing, and Todd’s condition never stabilizes.
Even though I’ve been in a long wringing-out cycle, I can compartmentalize. I can feel joy watching my kids grow, and I’m grateful that Todd has been able to co-parent with me these last 15 years.
My friend and I continued to walk as evening sunlight peeked under clouds that hung over the canal. I delighted in her stories about her kids and I told her some of my thoughts on how far we’ve traveled since those days when we had our babies.
The sun sets over the Keweenaw Waterway in northern Michigan. (Photo by Kristin Neva)
Talking with my friend helped me reflect on our ALS journey. One thing ALS has given me is perspective. As someone who once worked in a helping profession — coordinating a tutoring program in Milwaukee’s central city — it’s been humbling to shift from being the one giving help to the one receiving it. Each of us is just one diagnosis, one accident, one horrific event away from needing help.
Our conversation was a reminder that life is fragile, and it’s precious.
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.
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