Living with ALS means unraveling my concept of time

Last week I felt sad. I had to unravel a knitting project that had consumed a good part of my summer.

“What’s the big deal?” you might ask. Well, the big deal is that living with ALS has me feeling hypersensitive to time. How I spend my time and how my slowness affects the time I take to get things done are measured against how much time I have left to do things independently, without depending on a caregiver. That also includes my creative time.

Before ALS, that creative time felt never-ending. As a kid, I relished waking up on the first day of summer vacation. I knew I could spend the days ahead doing a million “creative kid things” or doing nothing at all. In college, I lost countless hours meandering through the campus bookstore. The arts, crafts, and historical costume sections were magnets for my attention.

Time seemed endless. Being unproductive felt good.

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But now that I’m living with ALS, being productive has taken a front seat, and I feel the pressure to make every minute count. That’s why, when I found myself holding a ball of yarn that minutes before was a formless but partly knitted scarf, I felt a profound sadness. I’d spent the summer creating it and now had nothing to show for all the invested time and energy.

I think others living with ALS have experienced similar moments, whether it be a creative project gone wrong, a long online document carefully typed out only to suddenly disappear in the abyss of cyberspace, or any number of goals we attempt to complete before ALS robs us of movement.

To save my sanity and restore my confidence, I had to reframe the unraveling of my work. Sitting quietly, I focused my thoughts on my tangled concept of time and why I felt I’d squandered it.

First, I had to admit that the real reason I pulled the project apart was because it turned into a knitting nightmare. The pattern was off, the length wasn’t right, and even though I trudged along and forced myself to knit “just one more inch,” in the end I wouldn’t be wearing it at all. Better to start over with a rewound ball of yarn than to see a never-to-be-worn scarf at the bottom of the drawer.

Then, I reminded myself to let go of the way things are “supposed to be.” To not be rigid about outcomes. To be willing to step back, see the big picture, and adapt. It was time to use my strategy of adapt, learn, and survive. This is how it works:

• Take time to reflect on what changed and identify what accommodations are needed.
• Learn by practicing self-care, reducing stress, and noticing when things go well.
• Survive by staying committed to daily goals and life goals.

I’m always surprised how something simple and totally unrelated to ALS, like a bungled project, can change my perspective about living with the disease.

We all have times of frustration and discouragement, but maybe my mental strategy will help change your perspective, too. It sure did for me.

Let’s continue to help each other learn to live 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.