SMA: A World of Firsts

“Well, Alyssa, I’ve certainly experienced many firsts thanks to you,” my mother said as a nurse untied the surgical gown from her back.

I’m sure we all have our fair share of firsts when it comes to living with a disease in which the unexpected becomes the expected. They are the moments that make us or break us, the moments that always leave us with a good story to tell. We live it. We breathe it. And, at the end of the day, we’re here to tell it. Can I get a show of hands from my SMA people?

Last week, I went to the hospital for a myringotomy which, simply put, is a surgery to place tubes in the ears. I’ve been experiencing a number of issues, or firsts, over the last year when it comes to my ears and sinuses. I’ve sat in countless patient rooms at the otolaryngologist’s office hoping to receive some answers. I’ve spent hours upon hours searching the internet for some type of diagnosis that would fit the bizarre symptoms I’ve been experiencing. But, to no avail, my research fell short.

In the days leading up to the procedure, fear clouded my reality. I was desperate for a solution. I needed something to improve my quality of life, and I pleaded with the doctors, saying how I couldn’t put this off any longer. Even if this procedure did nothing at all, at least I could say I tried. So, they all agreed under one condition: I’d have to do this procedure without anesthesia.

As most of the SMA community is already aware of, anesthesia is a tricky deal for people whose respiratory systems are compromised. There’s always that risk of losing the ability to breathe independently, and for a procedure like a myringotomy, the risk just isn’t worth it.

From a logical perspective, I wholeheartedly agreed. From a fearful perspective, however, it was a completely different story. Hello, most paralyzing fear I’ve ever felt! So, there I was in pre-surgery fully alert and aware of what was going on, nervously going through all the what-ifs while reminding myself I chose to do this. I chose to try regardless of the outcome. And, with shaking hands and a fast-paced heart rate, I chose to take the chance and face that fear.

As I was about be wheeled away, the team asked my mother to accompany me into the operating room where she would help reposition me throughout the procedure. So, with white knuckles and worrisome eyes, she sat by my bedside and intently watched. She watched as a syringe of lidocaine pierced my eardrum to numb it. She stroked my arm as a scalpel made an incision in my ear. She let me squeeze her hand as the fluid was suctioned out and the tube was placed. Best of all, she was there to give me a hug when all was said and done.

That day, my mother and I experienced a first in our little world of SMA: witnessing a surgery firsthand, something many people cannot say they have experienced for themselves. But, that’s just how it goes with SMA. You learn to expect the unexpected.

And, you live to tell it.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.