The Day I Was Reminded of SMA’s Unpredictability

Can I get a show of hands of all the folks who agree that living with SMA can be incredibly unpredictable?

OK, maybe that wasn’t the best way to take a poll. However, I imagine you’re nodding your head in agreement. You probably raised your eyebrows when you thought about the validity of the question because, seriously, it’s SMA we’re talking about here. And your brain probably just quickly scanned at least a dozen times when your life went from predictable and mundane to an ever-downward spiral of unpredictability.

To all the ladies and gentlemen who have been affected by SMA one way or another and find the aforementioned words to resonate, I feel you.

Life, in general, can be rather unpredictable, but I always find this to especially be the case when it comes to our physical well-being. What starts as a tickle in the throat suddenly turns into the flu, which turns into rigorous treatments and added care to barely stay afloat. Chewing on your favorite snack turns into aspirating on a crumb that, at times, turns into a serious case of pneumonia. Although I’m a big fan of making lists, I’m going to stop here as you can probably assume this list is endless.

At times, our lives can become messy, and the unpredictability of living with a disease as fragile as SMA can sometimes be daunting. One minute we seem to have control of everything happening in our own little worlds. We’re taking the reins of this whole life thing, and we’re showing SMA that we’re the ones in charge. But in the next minute, these little worlds of ours crumble, and reality hits as you realize the fragility and uncertainty of each moment. A few weeks ago, this hit me hard.

Interested in SMA research? Check out our forums and join the conversation!

It was a Monday night, and I had been experiencing some stomach pain. This was nothing new. For 15 years, I’ve battled acid reflux. Between being on a high dose of proton-pump inhibitors, never leaving the house without Tums in my purse, and always having a bottle of Mylanta in the refrigerator, I’ve kept my acid reflux at bay for the most part. But let me stress that last portion of the sentence for you.

For the most part.

There have been plenty of times in which stress or poor eating habits have brought upon severe acid reflux episodes, but they always subside after 24 hours. So, when I was experiencing some discomfort that Monday night, I thought it was just another episode. I took some Mylanta, ate some crackers, and went to bed feeling better. After all, I had done all the right things.

The next morning, I woke up with the most unexpected and intense pain in my stomach. How could this be happening, I thought. I did everything right. As I lay curled up in a ball, that reality of unpredictability swirled around my head. Sometimes, we can do all the right things and still have them not be enough. Sometimes, the only predictable circumstance we can rely on is unpredictability.

Soon, matters grew worse, and it wasn’t long before my mother and brother were taking me to the hospital. By the time we arrived, my body was fading. I was so weak my brother had to carry me in, and nurses immediately rushed to my side to bring me into a room. Moments later, they discovered my sugar had dropped so unexpectedly low that I was on the verge of a coma. The team of doctors sprang into action and, in a matter of several minutes, my glucose infusions brought me back to life.

As I type this, it has been three weeks to the very day, and almost to the exact minute, when this occurred. In just a matter of a couple hours, my body went from stable to lying on a stretcher in the trauma center of the top children’s hospital in the world. I spent the next two nights in the hospital recovering and nursing a bout of gastritis. As I still try to wrap my head around all of this, I reflect daily on the unexpected turn of events that took place. I had never been in a predicament like that before. I had never known what it felt like to be trapped in a body that was letting go and a mind that still remained sharp but unable to speak. I had never anticipated on matters unfolding the way they did.

But then I remember it’s SMA I’m dealing with, and the sooner I can embrace all of its unpredictability, the sooner I can learn to be at peace.

***

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.