Friendly competition makes my caregivers strive for excellence

My caregiver held the toothpaste tube in both hands, meticulously squishing it flat from the bottom all the way up to the nozzle. I laughed: “It’s OK, I have a whole new tube ready to go in the closet.” She shook her head and gritted her teeth as she forced a pea-sized amount of toothpaste out and said, “I refuse to be the one to give up and throw this one away. I’m no quitter!”

Because of SMA, my hands are weak, so I need help with fine-motor tasks like squeezing toothpaste onto my toothbrush every morning and evening. There are usually four different caregiving friends in the rotation for my “hygiene routine,” and inevitably, they have developed a challenge to see who will be the last to use a tube of toothpaste before the next one has to give up and throw it away.

This is just one of the many friendly competitions that my care team (about 25 people total) has created to turn tedious or mundane activities into Olympic-level sports. Other notable skills include speed (we’ve been known to use a stopwatch), strength, accuracy, and recall. “It’s my actual goal to be able to use your [ceiling track] lift with no reminders and be better than everyone else!” claims one of these friends. “I know I’m not there yet, but one day!”

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Several would agree that their goal is to have the “Fewest Incidents While Driving Connie’s Van.” While I never tattle on any of them, I know they compare notes and horror stories about abrupt stops or hitting curbs. They also weirdly brag about their extra-wide turning radius, 50-foot braking distance, and 5 mph speed-bump hurdles.

A popular one right now is “Heightened Mind Reading Skills” to anticipate my needs and even my wants without me having to verbalize them. I believe more than one person has actually achieved this accomplishment by paying very close attention to my facial expressions, mood, and body language.

My favorite category is “Most Likely to Wind Up in a ‘Silly Stories With Connie‘ Song.” And while it may seem like it’s cheating, you actually get bonus points if you write the song!

Some friends set their own goals to strive for their personal best. Some tease each other, comparing and trying to one-up the others, all in playful good humor. In a few cases, I am the instigator when I know I have two highly competitive, motivated helpers of similar skill levels. I’ll say to one: “That was really good! But then, you know, so-and-so managed to do it in only 10 minutes and didn’t need any reminders.” I love to see the spark in their eyes as they stand a little taller and boldly accept the challenge.

I’ve found that encouraging this kind of fun among my caregiving team fosters camaraderie, boosts morale, and raises the bar on the quality and excellence of the care I receive. These playful rivalries indicate a genuine and joyful connection — a shared commitment to showing up with energy, attentiveness, and heart. It may look like they are trying to outdo one another, but what I experience is their willingness to keep trying to do a little better for one another every day.

Note: SMA 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.