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Why Fireworks Are Difficult as a Person With Cerebral Palsy

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Ordinarily, I forget. I forget about the fireworks. I forget about the sudden bursts of noise. I forget that the Independence Day festivities begin before July 4th and last for days after.

I forget about the effect unexpected sensory stimulation has on my jangled nervous system.

Every year in early July, I am jolted awake from my denial with a bang. A pop. A boom. I have cerebral palsy, and thanks to my idiosyncratic neurological wiring, I also have a sensitive startle reflex.

I flinch at unexpected, loud sounds. I jump. My body tenses. A seemingly unquellable surge of anxiety rushes through my heart.

It was just after midnight on the morning of July 4 when I heard the earsplitting, telltale sound of celebration. A burst of noise so loud, it seemed to shake every fiber of my being. Immediately, reflexively, my left leg tensed and jumped. A stabbing, piercing pain gripped my heart, and my breathing felt shallow. The music I had been listening to seemed to fade out, growing increasingly distant as it became overtaken by my frazzled nerves. I willed myself to relax, but I felt perpetually tense.

In that moment, my mind flashed to the millions of Americans sleeping soundly, dreaming in red, white, and blue of sunny beach days, backyard barbecues, Pinterest-worthy parties, and the very fireworks that rocked me to my core. In that moment, as I lay awake fighting to stave off my anxiety while the majority of the country waited in gleeful anticipation for the highlight of Independence Day — the fireworks — I felt completely alone.

But I am not alone.

The startle reflex (also termed “Moro reflex”), an involuntary physical response to unexpected sensory stimuli, is exceedingly common in children and adults with cerebral palsy. Although the Moro reflex typically lasts from birth to 3 to 6 months of age, this response generally remains into adulthood for those with cerebral palsy, due to the neurological differences present in those who live with the condition.  The stimuli that can evoke this response include loud or unexpected sounds and abrupt environmental changes — making unexpected fireworks a prime trigger for the startle reflex in those who are living with cerebral palsy.

Nearly 800,000 Americans live with symptoms of cerebral palsy. Nearly 800,000 Americans may grapple with jumpiness and muscle tension at annual firework displays. Nearly 800,000 Americans may struggle to relax after fireworks are unexpectedly launched in their neighborhoods, not solely on the 4th of July, but for days prior and days following.

So today, I remember. Today, I remember that many Americans struggle with loud firework displays and hissing sparklers. Today, I remember those who are jolted awake by late-night festivities, trying to quell the sudden tension, the jumpy muscles, and the sharp onslaught of anxiety brought on by the startle reflex. Today, I remember that I am not alone.

Today, I hope you remember, too. I hope you remember to show respect, care and empathy for your family, friends and neighbors who may be grappling with the extra sensory stimulation the month of July brings. And if you struggle with the startle reflex, I hope you remember that you are not alone.

I am not alone.

You are not alone.

We will conquer this month together.

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Thinkstock photo by Yayasya.

 

Originally published: July 11, 2017
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