‘The Wonder Years’ were the ‘worry years’ before my MD diagnosis

I recently found myself rummaging through a very old collection of things from my childhood that my mother had preserved. Raise your hand if you have stuff like this: a box of certificates and trophies that you don’t remember, newspaper clippings of school events, scouting programs, a math paper from elementary school, and some sort of key chain that apparently used to mean something.

And don’t forget the report cards.

Those of us who have a certain number of years behind us can conjure up clear memories of grade school report cards, handwritten by teachers on cardstock or sealed in a manila envelope with the school’s logo emblazoned somewhere. The quarterly report card was presented to us as we nervously waited to be called to the teacher’s desk, and we were instructed to treat it like an original copy of the Declaration of Independence.

“Take it home, have your parents sign it, and return it as soon as possible,” the teacher repeated to each student. If memory serves, we only cared about the section where the teacher left a few lines of comment. I went to primary school in the early 1980s, and the teachers did not hold back the truth as they saw it.

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Worried about getting lapped

I have previously written about how my life before my diagnosis was physically normal, and that I believed I was keeping up with my classmates. But I am learning that my own memory has warped the truth about what really happened.

When I was in the second grade, my diagnosis of limb-girdle muscular dystrophy (LGMD) was still more than five years away, but the more I think about that first decade, the more signs pop out, even though the physical symptoms had yet to rear their ugly head.

On my second-grade report card, my teacher wrote: “Patrick is a worrier. He is uptight during certain times of the school day, and especially on days that the class attends (physical education). I have observed a pattern of missed school on these days, as well as frequent requests to visit the school nurse. Patrick is a bright boy who learns math and reading concepts quickly, but is prone to worrying in more social situations.”

There it was. I had long forgotten what was written on this musty old report card more than 45 years ago. In a flash, I was back in second grade, dreading that one day of gym class each week. I was worried because I couldn’t run or jump like my friends, and nervous about being chosen last for whatever team sport the teacher would have us play. I was a small kid who got cold easily outside (especially during the fall in New England), and at 7, I was trying to make sense of my world by practicing avoidance.

In her reply, my mom wrote that my parents were “trying to relax me,” and that my dad would meet with the gym teacher. As I read that, I recalled that I had complained to them that each gym class began with the class running laps around the outdoor sports field several times. I frequently fell behind and remember being lapped by the fastest kids, who could complete two laps before I finished my first. Not good.

My father went to the school, met with the teacher, and later told me that he enjoyed his visit. The teacher was more than fair and didn’t notice any bullying or problems with my friends. Dad told me to hang in there and keep working hard. All these years later, I don’t blame any of the grown-ups. A few short years later, the truth of my avoidance would turn out to be stranger than fiction.

I wondered, and I worried. As a kid, I was luckily too naive to think anything really bad was happening, but in my little mind, I was already adopting coping mechanisms as my body was throwing off signs that it was weaker than everybody else’s. I wondered why I ran on my toes and lost my balance when climbing, and I worried that I would become a “weirdo” to my peers. When I was 12, I was finally diagnosed with LGMD.

But I was also learning to advocate for myself. I didn’t have many tools in my toolbox yet, but I was already laying the foundation for speaking up for myself. I guess all those musty boxes of childhood memorabilia have value after all.

Now, where did I put my fishing license from 1992?

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.