ALS and Wellness Blog

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 it seldom rains. But when it does, the day is 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 – but, they’re usually both back on within a few minutes.

No connections

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.

While I sat in the silence of no internet, no TV, and no ever-present Alexa voice, I remembered one of the coping strategies I’ve learned from living with ALS and decided to turn the situation upside down. If this were to be a change of my day’s plans, I pondered, I needed to ask myself 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, 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 have to 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 “micro-changes” — I’m learning to better cope with the “macro-changes” 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.

----------------------------

FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS:

Adapt, Learn, Survive (ALS Stress Management Tips)

ALS got you stressed? Try connecting the dots to calm

Explore more posts HERE