With summer’s hardships come adventures in appreciation

Summer is a great time to be outside, travel, attend neighborhood gatherings, and spend time with people you love.

But those of us who live our adult lives with chronic illness face challenges in this season, as well as year-round. Still, there are many ways for us to enjoy the warm weather and continue to show society that we’re able to live active and fulfilling lives.

My limb-girdle muscular dystrophy forces me to modify activities based not only on temperature and daily energy level, but also on finding other humans who can help me when I’m out adventuring or simply running errands.

I try my best to enjoy each adventure as if I’m not sure how long I’ll be able to partake in it. Since my limb-girdle is progressive, a trip to the beach is as meaningful to me as a trip to the mall or the grocery store. Each time I leave the house I think to myself, “Someday this trip will no longer be possible.”

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While that thought may cause some readers to think negatively about disease progression, that’s not what I mean. My mind frames it more along the lines of “I’m thankful and happy that I get to do this action right now.” That helps me collect the memories, slow the time down, and appreciate my surroundings. I attempt to keep the same wonderment in everything I do, in the same way I thought and felt as a child before my diagnosis at age 12: that simply living life each day is an adventure and a gift.

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I talk with people I don’t know, and I wave or smile at just about everybody. Why not? It’s easy to be nice, and using a power wheelchair is a treatment that allows me to participate in life more fully than if I were trapped at home.

I roll through my neighborhood in the summer weather at least once a day. I listen for the birds and traffic and see what kinds of plants are growing in everyone’s yard. I tilt my head as high as possible to feel the sun’s warmth. I bottle the feeling so if and when I’m hospitalized in the future, I can call up these times like finding the right chapter in a book or skimming through a recorded movie to watch my favorite scene.

Many online resources list ways that a disabled person can have fun outside in the summer. That’s lovely, but I say make your own guide. Continue to add to your life script, film the movie of your existence in your mind, and celebrate what you can do today rather than what you might not be able to do in the future.

Bring on the summer, and I’ll find wonder as a grownup in my own yard by watching a rabbit munch on grass. While it may not be a huge deal next to the grind of daily life, simple things like that can keep the stressful moments of life with a wheelchair at bay.

I wish all of you happy summer adventures. Grab today and save it forever.

Note: Muscular Dystrophy 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 another 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 Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.