How my ALS has taught me that change brings opportunity
When I'm frustrated with schedule interruptions, I redirect my focus
How do you handle an unexpected change to your plans for the day? Do you shake your fist in the air and complain, or pause and look for opportunities?
Last week, I was doing a little of both. I have ALS, and even though all of my life plans came to a full stop on the day I received my diagnosis, I also began learning valuable lessons in coping with change, especially the simple disruptions I experience every day that teach me to live with ALS. Here’s my latest lesson.
Last week, I had one of those days that began as normal as can be. I was at my computer attacking a long to-do list that included answering emails, a few moderator duties on the ALS News Today Forums, and finishing up my weekly column so I could turn it in by that evening’s deadline. My work table is near a large window, and that day the sky was blue with a few large storm clouds looming in the distance.
I live in southern Arizona, where the summer months are often called monsoon season. Days of intense heat are interrupted by sudden, strong, “gully washer” thunderstorms. Once in a while, a bolt of lightning will cause the power and internet to go out in our area. While they’re usually back on within a few minutes, occasionally they’re off for several hours.
No connection
That’s exactly what happened to me last week. One moment I was typing away and the next I was staring at a frozen screen. Glancing out the window, I shot the storm clouds a menacing look and waited out the usual few minutes for everything to be restored. But nothing happened, and my patience grew thin. Anger began flooding my body, followed by frustration and finally disappointment that my carefully time-blocked to-do list was now off-schedule. Mentally, it was a shake-fist-in-the-air moment.
Sitting in the silence of no internet, no TV, and no ever-present Alexa voice, I turned to one of the coping strategies I’ve learned from living with ALS and decided to turn the situation upside down. If this was to be a change of my day’s plans, I pondered, I needed to ask the question, “What are the opportunities here?”
My answers ranged from, “Wasn’t I always complaining about how much time I spend at the computer? Didn’t I want to spend more time on projects-in-waiting, such as my knitting or sorting through the stack of catalogs collecting on the corner of my table?” And “Why not enjoy feeling untethered to my many electronic devices?”
And that’s exactly how I spent the next few hours, tending to projects I’d put off for too long and enjoying sitting in peace and quiet. By the time our internet popped back on, I felt calm, relaxed, and fine with tackling my to-do list — the next day.
The big change
In 2010, when I sat in my doctor’s office and she told me I had ALS, deep down I knew that meant a permanent change. I mourned the loss of my life goals, my expectations, and the familiar “me.” Throughout the years since, I’ve learned to cope. And to look for opportunities.
What opportunities have I found? The “opportunity” to go forward with my life. Yes, I push a wheeled walker, wear ankle-foot orthoses, use a thickening powder in my drinks, and pronounce words with great care. Sure, my life goals may have been modified, but I’m still participating in life.
A bigger lesson
I’ve learned that every time I successfully cope with unexpected changes in my daily life — the microchanges — I’m learning to better cope with the macrochanges my ALS brings me.
It takes practice. When you face a change, large or small, try these strategies. Look for opportunities, maintain self-care, ask family members for help, be adaptable, and check in with your feelings.
Let’s 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.
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Comments
Jeannette Rae Dolan
You are AMAZING! I watched my younger sister be diagnosed and quickly progress through ALS. She was gone within a year of diagnosis. She probably had symptoms a few months prior. It was horrific! When I read the word “opportunity” and ALS in the same sentence, I actually dismissed it. Then I thought, I’m going to read it. I’m glad I did. My sister wasn’t as fortunate, and her life ended early at 57, but I’m glad you are doing so well. Are you on a certain regimen for your success? I try to follow updates on ALS in Denise’s memory.