Grieving Over a Spoon and Fork

Who would've known that a seemingly simple pair of utensils could carry such emotional weight? The other night, my sister invited us over to her house for dinner. This wasn't an unusual occurrence; in fact, it was a common routine for us to share meals two to three times a week, taking turns hosting. This time, we had planned to enjoy one of my all-time favorite soups, a recipe I had actually taught my sister to make.

A wave of emotions when reminded about SMA's progression

As I mentally prepared myself for the upcoming meal, a wave of emotions hit me as I decided to bring my own favorite spoon and fork from home.

It might seem like an unimportant detail, but the act of bringing my own silverware to a dinner party brought unexpected sadness. It was a reminder of the relentless progression of this disease.

This spoon works for me now

So why this particular spoon? I have found a spoon that is extremely thin and lightweight. It also is wider and shallow, so it fits in my mouth without spilling the contents of the spoon all over me.

A reminder of my loss of independence

I couldn't help but reflect on the days when I was able to go on dates with my husband, effortlessly lifting a glass and cutting my own food, enjoying the simple pleasures of independence. However, lately, I've noticed my arm strength weakening, and it's a bitter pill to swallow. Despite faithfully taking the medications aimed at slowing down or halting the progression of the disease, the daily realities of living with it persist.

I quickly remember a time when I was in my early teens, and I had gone out to dinner with some friends, one who was about 10 years older than me, and also lived with spinal muscular atrophy. He had his friend pull out a container of silverware from his backpack. I thought it was so strange and didn’t fully comprehend why he would bring his own silverware to a restaurant. But now being in my mid 30s, I fully understand. It was a sad moment of grieving when I realized, just how helpful this simple spoon and fork would be.

With my special spoon, I can still feed myself

As I sat down for dinner that evening, my familiar spoon and fork in hand, I had a quick moment where I felt silly, pulling it out of my purse. But as I easily lifted this lightweight utensil to my mouth and was able to feed myself I realized it was all worth it.

Through my own experiences, I've learned that it's okay to be creative, to adapt, and to find new ways of doing simple or complex tasks.

Though initially embarrassing, the practice of bringing my own utensils has given me a newfound freedom – the ability to feed myself on my terms. This seemingly small act has transformed into a powerful assertion of my independence, a reminder that I can still make choices that empower me despite the challenges I face. And it's a lesson that applies to every aspect of life with spinal muscular atrophy.

A reminder of my resilience

So, as I continue on this journey, I'll carry my cherished spoon and fork with me – not just as utensils, but as reminders of my strength and resilience.

If you found something that works don’t be ashamed of it. Just like I use my wheelchair as a tool for independence right now I’ll bring along my spoon and fork as another tool to independence and continue to feed myself.