Bottling up the summer joy that always transforms my life

With August officially here, I feel like I’m in a competition with time, frantically trying to make the most of summer before it’s gone. In doing so, I’m putting unnecessary pressure on myself. I’m measuring my days by how much I took advantage of the warmer weather and beating myself up if I didn’t do anything productive. I’m racing against the clock before life with spinal muscular atrophy (SMA) changes with the season.

Living with SMA, summer is when I feel most like myself. It’s when I feel the most free. At this time of year, the extra daylight energizes my body. My muscles don’t tense as easily in warmer temperatures, and salty ocean air revitalizes my soul. New England summers are fleeting, but while they’re here, they rejuvenate every fiber of my being.

There are an infinite number of reasons why I love this time of year, so I desperately try to hold on to it for as long as I can. Most importantly, during the summer months, colds, the flu, and other illnesses tend not to be so widespread, which works to my advantage.

Given the fragility of my health, I often have to isolate myself when germs run rampant. It’s a personal choice I make every time November comes around. While sacrificing normalcy for home confinement has its own set of complications for my mental well-being, I’d much rather stay healthy than risk fighting off a respiratory illness that could potentially take my life. This makes summertime even sweeter when I don’t have to worry as much about catching an illness.

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I was recently lying on the beach staring at the ocean. Boats were coming and going, my niece and nephews were playing in the sand, and I could feel the contentment in my body as though it were healing every part of me that SMA had tried to destroy. Amid my Zen, the jarring thought hit me that moments like these are soon coming to an end. Soon, colder temperatures will be upon me and illnesses will be everywhere I turn. I will be cooped up inside, isolated, until summer begins anew.

While my love for this season drives the urgency to savor every moment, I must cherish these precious summer days without overwhelming myself with the need to constantly do more. Despite the pressure I put on myself to make every summer day count, I need to remind myself that it’s OK to slow down. No matter how I spend the last few weeks of summer, these are the moments I will bottle up for the colder, lonelier months — the moments that will get me through my most challenging days, knowing the joy that’s to come after a long, dark winter.

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.