On Being at the Mercy of Others

I almost accidentally drank chunky coffee the other day.

How’s that for the introduction of all introductions? I thought about easing you into it slowly in an attempt to avoid making your stomach squirm. I explored how I could go about this storyline in a manner that would not involve really questionable coffee and the fact that coffee turned its back on me. But then I realized the only way to begin this column was to express what happened in a way that was equivalent to how I felt in the moment: aghast and a little confused.

My main source of energy, both physically and mentally, is coffee. Coffee has introduced me to a whole new world of productivity that I never knew my weak, little muscles were capable of. I limit myself to one cup a day, and as the day progresses and my energy depletes, I may drink a 5-ounce cup of Starbucks Frappuccino that you can find at any supermarket. (Disclaimer: I also drink other fluids to stay well hydrated.) These Frappuccinos are basically sugar and milk with very little caffeine (or I’ve just built a high tolerance to it. Hey, Ma, I hope you’re proud!), but it curbs my exhaustion, which is enough for me.

Like most evenings, around five o’clock that day I asked my mother for a sip of my Frappuccino. Because I am unable to lift my arms, I am dependent on others to give me food and drinks. She poured some into a cup, grabbed a straw, and walked over to me. I took a big gulp, and just as I was about to swallow, I felt chunky liquid resting on my tongue.

Let me ask you something. If this were to happen to you, what would you do next? Would you lean forward and spit out the drink? Would you run to the bathroom sink to spit it out and scrape your tongue with your toothbrush? Or would you just simply bring your cup back to your mouth to discard what was most definitely not coffee?

Regardless of what your answer may be, you would do something. In my case, I was at the mercy of someone else. My mother hadn’t expected for this to happen as she was in the middle of cooking dinner and on autopilot. She gave me the drink, immediately turned around, and headed for the kitchen.

Because of SMA, I am forever at the mercy of others. At times, it’s a big chunk of reality to swallow. (Pun definitely intended.) This coffee bit is just a menial example of what it’s like to rely on those around me for everything, but that was my intention in sharing it. It’s menial. In the grand scheme of life with SMA, it doesn’t hold a candle to the problems and challenges I face. But it goes to show that every aspect of my life, right down to accidentally drinking chunky coffee and not being able to properly spit it out, is always going to be in the hands of those around me.

I ended up casually spitting my drink out all over myself because I’d rather ruin my shirt than ruin my stomach with something that probably wasn’t coffee. For a split second, my mother thought I had choked but then the saw milky chunks on my shirt. We had a good laugh.

And now I have a good story to tell.

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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.