Holding on to hope allows me to turn setbacks into comebacks

I’ve written many stories about hope, which has enabled me to climb mountains and achieve my goals. Throughout my journey with SMA, I’ve traveled across many mountain ranges.

But what happens if I slip or face an avalanche of problems, causing me to slide back down? There have been times when I’d tumble backward in my progress toward a goal, but my hope didn’t roll down with it.

When I fall down a mountain, I try to climb right back up, with even more determination.

At the end of 2023 and beginning of this year, my spirit was joyful because I was making progress on a major goal: improving my speech. While my real voice is audible, it’s hard for me to speak clearly, and others have a tough time hearing me when there’s a lot of noise. Thus, I would still use augmentative and alternative communication devices, such as my TD I-13, to talk to most people.

However, I’d use my own voice with three or four select people to keep up the practice. My mom and a day nurse could understand my voice, and I was practicing speaking with two new night nurses. I was kicking butt on my way up the mountain.

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Sliding backward without losing hope

In April, however, I got COVID-19, which rocked my world. It horribly affected my breathing, which in turn affected many of my other abilities. For instance, my voice became even softer — so much so that I couldn’t be heard even in a quiet room. Progress toward my goal halted, as I might expect since I was sick.

But even after I got better, my speaking difficulties persisted for months. My breathing felt back to normal, but my lungs still weren’t strong enough to get my voice out. Even my mom and my day nurse could barely hear what I was saying. Thankfully, I could still communicate with my TD I-13 and other speech-generating devices.

Although my efforts to reach my goal had slid backward, my hope remained constant. I had faith that one day, my voice would get back to where it’d been.

Climbing back up

Two weeks ago, I started to make a bigger effort to speak more. I’ve already made huge gains! My voice is returning to the volume it was before COVID-19, allowing me to have full conversations with one of my night nurses. My mom can hear almost everything I’m saying. I still have a ways to go, but I trust that I’ll get there.

When I practice talking, I don’t mind repeating myself multiple times if the other person can’t understand me. It’s important they know that and maintain a can-do attitude. In my experience, people learn to understand me quickly after they tell themselves, “I can absolutely learn to understand Ari’s speech. I can and will master that climb.” The process is much slower when people are skeptical that they’ll ever be able to understand me.

When someone makes an effort to understand me, they’re telling me they’re willing to be patient and help me reach my goal.

That said, I’m glad I have a quicker and easier way to communicate with people who are in a hurry. Using devices like the TD I-13 is like having a helicopter that can fly me to the top of the mountain, which is wonderful!

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.