Learning When to Speak Up and When to Be Silent

Hello there! It was one year ago this month that I wrote my first column for Friedreich’s Ataxia News. I’m so thankful that I’ve been given this opportunity to share my thoughts and feelings as a caregiver. Thank you for reading each month and coming along on this journey with me!

My son, Noah, started having voice issues in his early teen years. We chalked it up to puberty and figured that it would work itself out with time.

Until you live with something day in and day out, you don’t realize how much it can affect your life. Noah sounded like he had lost his voice and was hoarse all the time. It became such a problem for him. He wasn’t being understood, and he felt left out in crowds when he just couldn’t compete with the noise.

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Years later, after Noah was diagnosed with Friedreich’s ataxia (FA), we realized that this was a pretty unique first symptom of the disease. While balance issues and scoliosis were definitely troubling, losing his voice was a blow that was hard for him to deal with.

Confronting systemic accessibility issues

I shared in a column last August how Noah had moved out and transferred to a large university in our area. The move was a transition for us all, and he has since learned and grown as a person.

Noah’s major is journalism, and he aspires to be a sports writer. He’s had the opportunity to join his school’s online publication and report on various sporting events. He has loved sports since he was a little boy, so this has been a dream come true for him.

Noah recently was telling his dad and me about the difficulty he had trying to get into a men’s basketball game on campus. The university’s basketball program has really taken off this year, and students often must wait in a long line to enter the arena.

For this particular game, Noah arrived early and waited in line for hours, which is definitely a challenge for someone who uses a walker for assistance. As the doors to the arena finally opened up, Noah was nearly knocked down in the whirlwind of students trying to find a seat.

If you don’t live with mobility issues, accessibility just isn’t on your radar. After hearing Noah’s story, my husband and I encouraged him to use his platform to speak out about what had happened to him that evening.

Using his true voice

Noah wrote a letter to the university president about his experience that was shared in his school’s publication, and surprisingly, he received an outpouring of support! His voice was heard, and changes were made for the better for all who need accessibility in the arena.

FA is a disease that takes and takes, and just when you get used to what it has taken, it takes some more. Watching Noah has taught me that even though his physical voice has been affected, his true voice is something that can never be taken from him.

I can, and often do, speak up for him, but I’ve learned that it’s much more powerful when he speaks for himself. Noah has lived experiences that I will never have, and while I can empathize, I can never truly know what it’s like to walk in his shoes.

Noah was asked to share his experience on the Paul Finebaum show, a sports talk radio program. He shared that, “It broke me when I had to quit sports because of my disability, but I found a new passion; I found a new way in life. And my disability didn’t end my journey.”

Life often doesn’t turn out the way we plan. When we see changes as new opportunities for growth, we are often surprised by things we come to enjoy along the way. We can use our voices in ways that can change our corners of the world, and sometimes we get the pleasure of sitting back quietly and watching our children do the world-changing.

Note: Friedreich’s Ataxia News 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 another 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 Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.