What time well spent looks like in life with ALS
After auditing my daily schedule, here's what I've learned
One of the interesting mental challenges I continue to experience as I live with ALS is its effect on my perception of time. The predicted prognosis of living only two to five years after symptom onset is a shadow that hangs over every ALS patient. Even though I’ve broken that prediction and am in my 15th year of the disease, I still feel obligated to make every minute count.
I often blame my ALS symptoms for standing in the way of me spending my day productively. Recently, my frustration reached a tipping point, forcing me to conduct a mini-intervention with myself to reorient my relationship with time. Here’s what happened.
I’ll admit that most days I set myself up for disappointment by creating an overly long to-do list. I know it’s a carryover habit from my working years when I took pride in my ability to multitask, be on time, and meet deadlines with ease. But with the onset of ALS, more often than not, my projects kept getting carried over from one week to the next. The simple answer, I told myself, was to put pen to paper and write down what I did each day and how much time each activity took. Then it would be easy to carve out the unnecessary time wasters.
The surprising results
After deducting time for sleeping, eating meals, dressing, bathroom breaks, mini-exercise sessions, and after-dinner winding-down activities, I discovered I had only four hours left over for solid, serious, sit-down computer time.
Would I give up one of the short exercise sessions that I spread throughout the day? No. They’ve been too valuable in helping me maintain my physical strength and skills. For example, just a few weeks ago, while walking with my rollator, I began lifting my knees higher with each step and no longer dragged the toes of my shoes. That is certainly an accomplishment I don’t want to lose.
What about meals? Should I try multitasking while I eat? I could catch up on my reading or write down notes for my next column between bites of food. Nope, not an option. My habit of mindful eating — paying attention to my posture, chewing carefully, and avoiding distractions — has helped me avoid choking. I’ll leave that habit be.
How about I gain time by skipping getting dressed up for a day at home and spend the day in pajamas instead? Again, no. It’s important for me to practice showing up. Getting myself ready for the day tricks my mind into feeling better, no matter how I felt when I woke up.
Mulling it over
Reflecting on my list, I realized I had indeed made accomplishments. At my age and living with ALS, even with my slow symptom progression, I am doing enough.
That’s the thing about ALS: It is what it is. It teaches you about what you can change and what you can’t.
I decided not to change a thing. I’ll continue to do what I can, know that what I do has value, and be satisfied with how I’m spending my time. In other words, I am learning to live well while living with ALS. And I believe you can, too.
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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