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Listen | Own the Equinox, Day 24, Part 1

September 17, 2015

By Caroline Kaczor

Caroline Kaczor’s best friend, Rebecca Alexander has Usher syndrome type 3. Caroline is a Licensed Master Social Worker at a city hospital in NYC, a group fitness instructor and serves as Rebecca’s travel guide on many trips. She lives in New York City and is the proud aunt to a mini golden doodle, Olive. To read more about Rebecca and Caroline check out Not Fade Away: A Memoir of Senses Lost and Found published by Avery Book Paperback releases Tuesday Sept 15th.

Rebecca and Caroline posing and smiling in front of firetrucks
Rebecca and Caroline

I love a good solution. Can’t find something? Let’s put reflective tape on it so you can find it more easily next time. Can’t hear me? Let’s try a different hearing aid, a new battery. Does this thing need to be charged? This restaurant is dark and noisy? Let’s practice our tactile sign language. Just in case.

I see how my best friend strains to follow conversation, how her eyes dart around to gather information. It's hard to see people we love struggle, get physically injured or to be misunderstood by strangers. It’s even harder to know we can’t prevent life from happening.

Usher syndrome can make life messy, unpredictable and exhausting. Usher syndrome has taught me many lessons. One of the most important I’ve learned is the power of listening, of just being there. When my best friend comes to me with a problem or challenge related to Usher syndrome I have options for my response.

I could tap into my box of concrete solutions. I could say, “Did you tell them you wear hearing aids?” “Were you using your cane?” “That's a bad route to take, there is always construction."

You'll never hear me say, "I totally get it" because I don't. I don’t have Usher syndrome. I’ve never depended on a cane for mobility or hearing aids to discriminate what’s been said. My experience is different.  

So when I carefully craft my response I try to think of what is going to best serve my friend in the moment. I aim to say, “You know what? That was a really tough situation” or “You handled that really well.”

I should let you know I’m a planner. While my best friend prepared to embark on a national book and speaking tour educating others on Usher syndrome I tried to plan for every possible situation. There are many 'what ifs' when traveling to new environments. I’m happy to report she did just fine. She went with the flow, rolled with the punches and thrived. We’ve had the opportunity to meet so many incredible people in the Usher community.

As Rebecca and I put in our miles each day to Own The Equinox, mostly separately but sometimes together (when our busy schedules allow) we reflect on our lives, how fortunate we are in so many ways. But most importantly we laugh. We have a blast together. 

As a fitness instructor I appreciate the physical benefits of exercise. But now, I love how it grounds me, slows things down and puts everything into perspective.

This isn't a race. We're in this for the long haul. I want to find a cure for Usher syndrome in the worst way but I also want to stay present and enjoy the small, special moments of daily life.

We can plan all we want, pack every item of technology we own but life happens in real time. Sometimes the best thing to do is just be there.

Caroline and Rebecca at book signing. The book is titled Not Fade Away

Learn more Usher Syndrome Awareness Day and how you can Own the Equinox.

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