The blessing and burden of relying on medical machines

There aren’t many guarantees in life, but if you live in New England, you can always be sure there will be a winter nor’easter. With these storms come snow, wind, and power outages. The local news outlets remind everyone to get their bread and milk before the shelves are cleared, and people get their shovels, plows, and candles ready. For most New Englanders, a nor’easter is just a blip in their week. However, living with spinal muscular atrophy (SMA), storms like these remind me of the blessing and curse of relying on lifesaving medical equipment every hour of the day.

I received my first piece of medical equipment when I was just a year old. After being intubated in the hospital for a respiratory infection, my doctors felt it was best to start me on BiPAP, a noninvasive ventilation device that helps people with certain respiratory conditions breathe. Since then, I have used this machine every night to sleep or when I am sick and need extra airflow into my lungs.

Alas, the list of equipment that sustains my well-being doesn’t stop there. In 2022, I had a nasojejunal feeding tube placed. At the time, my body could no longer keep up with my nutrition. My organs were starting to fail, and life seemed grim. By the grace of God, I miraculously recovered and can say with confidence that my feeding tube saved my life. To this day, my body relies solely on enteral feeding.

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Though my BiPAP and feeding tube are the main cogs in my machine, I also use a power wheelchair. My nebulizer, cough assist machine, and suction machine are never far from reach, either. Today, these technologies are marvels of modern medicine. They are the reason why I am able to live as healthy as I am. With a quiet chorus of hums and whooshes supporting me behind the scenes, I’m reminded of the true blessing these machines are in my life.

But there also is a strange duality in knowing that the technology that keeps you alive can fail. Though I rely on this equipment every day, I simultaneously prepare for the moment it might not be there. That silent anxiety always sits in the back of my mind.

For me, electricity is a lifeline

Recently, New England was expecting its first nor’easter of the season. I watched my dad as he lugged the heavy generator out of the garage, poured gasoline into the tank, and ran it through a test, ensuring that we would be prepared in the event we lost electricity. In our household, a power outage isn’t a simple inconvenience. When the lights go out, my safety shrinks. My emergency preparedness is tested, and I realize how vulnerable living with SMA makes me.

For most people, electricity is a background utility. But for someone like me, who has complex medical needs, it is a lifeline, necessary to my survival. Sometimes, this feels like a curse. During a storm, I have to think in terms of battery percentages and backup plans. I have to know how long my BiPAP can run without power. I have to make sure my feeding pump is charged. I have to trust that the generator will turn over when I need it most. Yet, even in those moments of vulnerability, I am still grateful.

Life would look very different if it weren’t for the machines I have today. They are the reason I wake up rested, nourished, and strong enough to greet each new morning. So while they may give me extra worries from time to time, in the end, my blessings always win.

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.