Just why was I saving some of my old clothes?

Imagine you’re all alone, stranded on a remote island and surrounded by miles and miles of uncharted ocean. Here’s my question: How much time would you let pass before giving up hope of ever being rescued? One year? How about five years? Or are you an “I’ll never give up hope” type, kind of like me?

To me, living with ALS is akin to being stranded on a remote island. And even though my rescuers are still a long way off because the medical experts don’t know the cause of ALS or have a cure, I’m patiently waiting and hoping. My sense of hope gives me the strength and courage to carry on, and sometimes I find hope in the unlikeliest places.

A few months ago, my husband and I began a spring-cleaning project that focused on clearing out clothes that we agreed we’d never wear again. That included a combination of the “gently worn and no longer fitting,” plus items from back when we made the permanent move from Iowa to southern Arizona.

We’d misjudged the Arizona weather, which ranges from hot to living-on-the-sun hot. Along with that, we’d overestimated the dress code of our community; T-shirts, shorts, and tennis shoes seem to be acceptable attire just about anywhere, day or night. So the too-warm and the too-fancy garments ended up in the dark depths of our closets.

Recommended Reading

July 18, 2024 News by Esteban Dominguez Cerezo, MS

Worsening cognitive impairment linked with loss of smell in ALS

Keep it or throw it?

While my husband emptied his closet of button-down shirts and silk ties, I sat on a folding chair and sorted through my fancy belts, fuzzy warm scarves, and sweaters that kept me warm during Iowa’s subzero winters. Having been through two decluttering projects, one involving a cornucopia of socks and the other facing my “someday-itis,” I’ve learned that success lies in making quick, simple decisions. No lingering or bartering allowed.

I was filling my second donation bag and working through a bottom drawer of the dresser when I discovered a carefully folded, long-sleeve top and matching skirt that brought back instant memories. I remember wearing the stylish ensemble in Iowa while attending festive work-related events in the evening. I always felt good wearing it and loved how the skirt gracefully swirled when I walked across a room.

As my fingers caressed the fabric, I conjured up the magic questions of the day: “Will I ever wear this again?” and “Why am I keeping this?”

Immediately, a voice in my mind answered, “I saved it to wear when my ALS went away.”

Oof … I certainly didn’t see that one coming!

The words surprised me so much I slumped back into the chair and took a long pause to think.

ALS islands

That’s the thing about ALS. It forces us to confront our dreams. Was I in denial about my ALS? No, I’m a realist. I know my ALS is here to stay. But I’ll still hang onto my feelings of hope that someday I’ll be rescued through the discovery of improved treatments or even a cure.

Even though every ALS patient lives on their own ALS island, we volunteer for clinical trials, participate in ALS fundraising events, and reach out to each other, sharing emotional support. We share hope.

What did I do with that stylish top and skirt? I thanked them for the happy memories and placed them into the donation bag. I wanted someone else to enjoy wearing them as much as I had. And that gave me hope.

Let’s continue to help each other learn how 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.