My summer as the ALS bag lady taught me how to ask for help

For the first few years after I was diagnosed with ALS, I followed a daily routine of walking laps in the shallow end of our neighborhood outdoor pool. I soon became friends with a group of women who used the pool at the same time as me. I’ll always remember the summer they taught me a lesson in generosity. However, that lesson came with a caveat: that I always need to be specific when asking someone for their help.

Here’s a quick story of how the lesson unfolded.

Even though I had shared with my pool friends the news of my diagnosis, I couldn’t answer their simple question: “What can we do to help?” I was in a state of turmoil, navigating a jumble of emotions, including uncertainty about what I needed help with as well as embarrassment at the thought of having to ask.

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The spark that got the ‘plyarn’ rolling

One day while at home, I watched a YouTube video of a woman demonstrating how she made yarn out of a plastic bag; she called it “plyarn.” Since I love to knit and crochet, discovering a unique project that was good for the environment was all I needed to dive in. One plastic grocery bag produced 10 yards of plyarn, and I quickly crocheted a small purse, followed by a matching sun hat that I wore to the pool.

A few of the pool ladies asked how they could make their own hats, which led me to give poolside lessons. I casually mentioned that because I had ALS, crocheting helped me keep my hands nimble, and I hoped to crochet many more plyarn items. They offered to bring me their saved-up plastic bags, which, at the time, I happily agreed to take.

As the weeks passed, I quickly amassed far too many plastic bags and kindly asked them to stop. But the word had already gotten out. It was a mini-viral moment. Donated bags kept coming and coming!

I’d park my rollator near the pool’s steps, get into the water, and by the time I turned around, three, four, even five brightly colored bags had been secretly attached to my rollator, dangling like happy Tibetan prayer flags flapping in the mountain wind.

My final strategy to end it all was simply not to show up at the pool for a while.

A surprise handoff

Following a couple weeks’ absence, my husband and I returned to the pool. As we neared the entrance, a man nervously approached us. “My wife can’t make it today,” he said, “but she sent me to give you this. You are the ALS Bag Lady, aren’t you?”

I stared at what he was holding. It was a big, white garbage bag packed to the brim with plastic bags!

In a state of shock, and with my hands firmly clasping my walker, I could only muster a polite smile. Not knowing exactly what to do either, my husband reached out and took the bag from the man who just as quickly turned and walked away.

“What do you want me to do with this?” my husband asked.

“Toss it,” I replied, pointing to a nearby recycling bin.

And that was that. My summer as the ALS Bag Lady officially came to an end!

I learned many lessons that day, but the most important one was that people enjoy helping — and if it’s for a good cause like ALS, they’ll help even more.

But helping someone who has ALS can be a new experience, for both the patient and the friend. In my column “How to Help Your Friends When They Ask to Help You,” I include a list of suggestions that have worked for me.

Teach your friends how to become your circle of support. By working together, we can learn to live well while living with ALS.

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.