Rare tornadoes prompt us to rethink our storm preparation

My SMA needs must be addressed in case of a weather emergency

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by Alyssa Silva |

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I couldn’t believe what I was seeing on the news. A tornado had touched down in my home state, Rhode Island, for the fourth time in six weeks. Before these, I’d heard of one or two tornadoes touching down in New England in my lifetime. Never were they close to my home. But on a stormy Wednesday in September, things were about to change.

To live in this part of the country is to know we’re notorious for nor’easters, hurricanes, and blizzards. And in these storms, we almost always lose power, leaving me without access to my necessary medical equipment.

Every day, I require machines to, well, keep me alive. Given my SMA, I use a BiPAP machine to help me breathe while I sleep. During the day, I’m hooked up to a feeding pump to get my daily nutrition into my small intestines. I use a suction machine and nebulizer when needed. In other words, I rely on electricity to keep my machines — and my body — running.

So to be prepared for a range of bad weather, we always have a generator and tank of gasoline ready to go. But living with SMA in New England, we should always have an extra layer of preparation for the unexpected twists Mother Nature brings.

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That preparation was put to the test with the recent tornado. I was convinced this one would take a trajectory that would avoid my house and prevent the need to seek immediate shelter. If I was wrong and it touched down nearby, I didn’t know what I’d do. My parents are getting older, I’m getting heavier, and carrying me up and down stairs is increasingly difficult. How and where would I seek shelter if I couldn’t get to the basement?

As I watched the meteorologist zoom in on my neighborhood and warn us that tornadic activity was imminent, my hope dwindled. Suddenly, the emergency alert blared on my phone. A tornado was near.

Stair by stair, my mother carefully carried me down to the basement. With every step, I held my breath. My fear of falling down the stairs with my mother far outweighed my fear of the tornado. But the thought of a tornado ripping through my house while I was on the main floor wasn’t settling, either.

No matter which way we looked, we saw drawbacks. So we made the decision we felt was best for our safety in the moment. This event was uncharted waters for us. It was also a stark reminder that there’s never enough preparedness with SMA.

Two tornadoes passed over my house that day; fortunately, both weakened by the time they reached us, unable to touch ground and cause damage. Nevertheless, these events prompted my family and I to have a discussion about what to do in the event it happens again. We wanted to have a semblance of a plan in place so we could be better prepared and safe in our methodology. Falling down the stairs wasn’t going to be a part of that plan.

Thankful that the storms dissipated, we all took a sigh of relief when the tornado warnings were lifted. The stress and chaos they’d brought created a metaphorical tornado in our heads. But just when we thought the worst was over, another alert came through on our phones.

“A tropical storm watch has been issued for your location,” a robotic man said synchronously on our phones. My parents and I stared at each other in annoyance.

In New England, the wacky weather patterns never end.

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.


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