Improvising to go with the flow while living with ALS
Despite well-laid plans, a holiday buffet put my strategies to the test
I love it when all of my planning unfolds exactly as expected, and at the end of the day, I can pause to exhale, smile, and tell myself, “That went extremely well.” I wasn’t always an avid planner, but I’ve become one. Planning is just one of the many strategies I now use to help me live with my ALS.
Occasionally, however, life throws a few speed bumps onto my path, and I’m forced to employ a different strategy altogether — to improvise!
Fresh in my mind is the holiday buffet we recently attended at a fancy-schmancy local hotel known for its lavish events. My husband and I went there for a Christmas Day meeting with several relatives we hadn’t seen for years. We both looked forward to it, and of course, I dove into a planning frenzy.
My clothes were selected several days ahead, I mentally timed out the sequence of getting ready so I wouldn’t feel rushed, and on the day of the event, it all seemed to be coming together like clockwork.
A musical surprise
Arriving at the hotel, we met up with our relatives and found our table in the big ballroom that was already bustling with other diners. While chatting and sharing family memories, someone at our table complimented me on my speech. They were aware of my ALS symptoms and told me that my pronunciation was very good.
My mind quickly recounted all the months of daily practice I’d put in to improve my ALS dysarthria — all the breath work, posture control, and repetition of sounds and words. Mentally, I gave myself a generous pat on the back.
But then, suddenly, the background music started up. Oh, my!
The lone musician had been on break when we arrived. Now fully rejuvenated, he energetically strummed his acoustic guitar, noisily filling the ballroom with jazzy selections from the ’70s and ’80s.
People around me didn’t seem to mind; they began talking louder, something I couldn’t do, as I was already at my full volume. Dismayed but not deterred, l improvised, adding facial expressions, big gestures, and creative body language to my words.
And you know what? It worked. I didn’t feel self-conscious, and those at my table seemed to appreciate my extra effort.
Buffeting the buffet line
It was soon time to fill our plates with holiday food. I learned long ago that riding a mobility scooter among people in a buffet line just doesn’t work well. It’s better that I stay at the table while my husband kindly fills a plate and brings it to me.
Planning for this event included checking the hotel’s website for its holiday menu and coaching my husband on the various selections I’d like to have.
A well-laid plan. Or so I thought.
The melody of the Eagles’ “Hotel California” filled the room while I patiently waited at our table. But my husband returned with a frustrated expression and an empty plate. “They don’t have any salmon or mashed potatoes or Brussels sprouts, or that other thing you wanted. What should I do?”
Maybe they changed the menu, or maybe they ran out of my choices. Either way, I gathered my courage and promised myself to keep an open mind.
Slowly maneuvering my scooter toward the buffet line, I carefully avoided wayward children and distracted adults. Well-polished toes in sandals came dangerously close to being run over by my scooter’s wheels. As I peeked between bodies hovering at the dishes of food, my husband and I worked as a well-practiced tag team. I’d point to a steaming chafing dish, and he’d dash in to scoop a spoonful onto the plate he held.
And you know what? The food was great. The whole day was fun. As I fell asleep that night, I sighed and said, “That went well.”
That’s the thing about planning. I’ve learned it can help and bring me peace of mind. But I always have to be ready to improvise. It’s the same with ALS. Prepare, but be willing to go with the flow if ALS symptoms change. That helps me learn to live well while living with ALS.
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