Storms and SMA: The Opposite of a Love Story

Storms and SMA: The Opposite of a Love Story
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When it comes to storms, I’m a dog with high levels of anxiety.

Don’t get me wrong, I love the rain. A gentle rainfall is the perfect backdrop to at least half of my favorite activities. But storms are a different story. Storms are thunder and lightning and impending doom.

Logically, I know that storms — the kind we get in Minnesota, anyway — are often harmless. The odds of getting struck by lightning are in my favor. (The writer in me wants to include the statistics so I appear knowledgeable and scholarly, while the therapist in me knows better than to Google “how likely is it that I will get struck by lightning?”.) But storm trauma runs in my family.

My maternal grandmother’s house was flooded in the summer of 2008. She retreated to the attic and eventually called the sheriff, who coaxed her out of the attic window into a rowboat. (Yes, the water was that high.) She had to rebuild her house, largely from scratch.

Two weeks earlier, my great-aunt survived a tornado by taking refuge in their basement. As a sophomore in high school, I interviewed her family for my oral history report on natural disasters. I still remember my second cousin talking about the tornado, impossibly loud, whirling above their heads. Their house was razed to the ground, as was most of their neighborhood. You could see for miles — wreckage, family homes ripped to shreds, destruction and ruin and overwhelming, life-defining loss.

Then there’s me as a child, dead asleep. Our county was under a tornado warning — common during the dead heat of summer, but serious enough that my mom carried me downstairs, so we could take refuge in our basement. I was scared for myself, of course, and my mom, but I was primarily scared for my dad, who worked nights at a local restaurant. I had visions of the tornado plucking him off the road, car and all, never to be seen again.

I’m a canine with anxiety. I’m predisposed to whining, to cowering under tables and beds, to flinching at every bolt of lightning. But the SMA doesn’t help. Between my sensitivity to sound and my faulty limbs, storms are designed to drive me mad. If something were to happen, like a fire, a flood, or a felled tree, I would be helpless, unable to duck or flee.

My hatred of storms thrived last week. Rain pelted the window. The house shook with every bout of thunder. I checked the weather to see what was up — severe thunderstorm warning, with a possibility of hail. I was, once again, scared for my dad, who was in Wisconsin and would probably be driving through the worst of it.

I was relieved when he returned home. “Wow,” he said, looking at the rageful sky. “You weren’t kidding about the storm.”

I never kid about storms. After 25 years, you’d think he’d know that by now.

By the time we went to bed, things had calmed down. I was tired of earth-shaking thunderclaps, and ready for an uneventful night.

I woke to a sky scissored with lightning. Rey, my cat, sat on my stomach, looking outside with wide, glassy eyes. The anxious dog in me envisioned windows shattered by gusts of winds, bodies smoked by electrical surges, death, destruction, and impending doom.

Then the power went out and I thought, “This might as well happen.”

My BiPAP runs on electricity, so its alarm immediately began to sound. I’m a quarter of a century old, but I still called for my dad, screaming at the top of my lungs. The apocalypse had arrived, and I wasn’t ready to die.

A few minutes later, my dad shuffled in, impressively alert for 3 a.m. “Looks like you’re sleeping without your BiPAP tonight,” he said, as if the fourth horseman wasn’t whinnying outside my window.

When push comes to shove, I can sleep without my BiPAP, but it’s a distinctly unpleasant experience. I was less than thrilled.

The baby monitor we use to communicate at night — and by communicate, I mean me yelling “Dad!” at various decibels because I want to roll on my side — also runs on electricity, so my dad prepared to sleep on the couch to hear me if I yelled for him. I stared at the ceiling, quivering like a live wire, the dog under the table with soulful eyes and a wet nose.

We tried to sleep and failed miserably. Delighted by the absence of a BiPAP mask, Rey lay on my face. Literally. She practically covered my nose and mouth with her little body. I called Dad in, and we decided to lock her out of my room so she wouldn’t suffocate me in my sleep. Meanwhile, the storm raged on, illuminating my bedroom in sharp swathes of light.

Somehow, miraculously, I fell asleep. Hours later, when Dad came in to roll me, he said he hadn’t slept a wink — Rey kept jumping on his head and playing with his feet.

“Do we have power?” I asked.

“Nope,” huffed Dad.

“This might as well happen,” I thought.

Eventually, the sun rose, bringing with it power, sanity, and a renewed hatred for summer storms.

***

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.

Brianna Albers (she/her) is a crip cyborg storyteller living in Minneapolis-St. Paul. In 2016, she founded Monstering, a magazine for disabled women and nonbinary people; in 2017, she co-founded ZRIE, a private new media collective. She consults as a patient ambassador for SMA My Way and writes the column “The Wolf Finally Frees Itself” for SMA News Today. She recently finished the first draft of her space fantasy, #WaningCrescent, and is in the process of making the book of her heart the best it can be. Find her online at briannahopealbers.com and on social media @briehalbers.
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Brianna Albers (she/her) is a crip cyborg storyteller living in Minneapolis-St. Paul. In 2016, she founded Monstering, a magazine for disabled women and nonbinary people; in 2017, she co-founded ZRIE, a private new media collective. She consults as a patient ambassador for SMA My Way and writes the column “The Wolf Finally Frees Itself” for SMA News Today. She recently finished the first draft of her space fantasy, #WaningCrescent, and is in the process of making the book of her heart the best it can be. Find her online at briannahopealbers.com and on social media @briehalbers.

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2 comments

  1. Teri Taylor says:

    I love how you write. Question – you mention that you have a sensitivity to sound. I have a 10-year-old grandson with Type 1. Is sensitivity to sound a part of SMA???? I’ve never noticed it with him.

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