Kayaking & Hearing Aids: Si se puede!

It has been TOO long, guys! I’m sorry I haven’t posted but I promise you I will not let this blog fade away. I’m really excited about sharing with you over the long haul. I remember finding a blog written by a pregnant woman with Usher Syndrome and being so disappointed when she stopped posting before the baby was born. It’s like you missed the ending to a good story. So…long story short, that’s not happening here!

So let’s get to it. You may have noticed my title: kayaking & hearing aids! What’s going on here? I have been kayaking 3 times, once in Beacon, NY (my favorite town ever), once in Costa Rica, and once in Inwood. I really enjoy it every time as it’s both a physical challenge and a mental challenge. You really have to strategize your strokes and figure out how to maneuver where you want to go. It requires a lot of effort to go against the current and forge ahead. I’ve always had to kayak without my hearing aids, which presents a challenge. I feel very uneasy about leaving my hearing aids on shore and also about having them in a watertight container on the kayak itself. Neither is ideal for me. My hearing aids cannot get wet and I wouldn’t want to risk losing or destroying them. Something else to consider is that if you’re kayaking with other people, you might not be close to them in the water and it can be hard to communicate.

Yet, when you’re out there on the water, it’s as if you’ve conquered the world. It seems BRAVE and CRAZY to be on  your own in a plastic contraption, rolling in the current. You look around you and the world looks different and shiny and brand-new. Majestic bridges, green trees, picturesque sailboats. It’s life from a different perspective. You’re small and yet you feel large in the moment.

This kayaking high is what brought me to ask my audiologist at Helen Keller about waterproof or water resistant hearing aids. She asked me why I was interested, and I may have oversold my love for water activities (I don’t actually do that many). She was able to help me, telling me about a behind-the-ear hearing aid from Phonak that was highly water resistant. It was really exciting to hear about it. I don’t think this technology was around when I was a kid. I selected those hearing aids and now I’m just waiting for them to come in. I’ll review them once I get them.

I can’t wait to try the hearing aids. I needed them this past weekend when I went kayaking on Sunday at the Inwood Canoe Club’s free weekly open house. Uptowners should definitely check it out. The current was a little all over the place  and I had trouble hearing the leader. But I had informed them I wore hearing aids and someone stayed with me to help me navigate better. It was an absolutely beautiful day and it made me eager to go kayaking again soon. There is a really amazing MTA kayaking getaway deal that I’ve done before and highly recommend- would definitely do it again.

The word “disabled” doesn’t stop me from doing things. I know if there are any challenges, I just need to come up with a solution. I believe that being open about my challenges empowers me. I believe it helps others to better understand me. Asking for help and communicating what I need requires inner strength and confidence. It would be easy to pretend I heard everything or walk by myself (slowly, away from the group) or not go to the bathroom because I don’t want to figure out where it is. But that would be sad and I really wouldn’t be fully participating or enjoying experiences. There’s no shame in asking someone to repeat or holding onto a friend’s arm in the street. I’ve even had a movie theater usher help me find my seat on my way back from the bathroom. It might be a little awkward, but it’s nothing compared to living a life of fear and shame. If you know something that invigorates you, pursue it full force and turn any obstacles into hills you just walk over 🙂

My Eyes

Visual field test results from early 2013

This blog has been a long time coming. I originally set up my WordPress site in January 2012. It was a New Year’s resolution that didn’t get further than that. I think I got stuck because I was afraid to share my story. I wasn’t ready. A lot has changed since then. So let’s dive right in.

Recently, I had a visual field test done for my Usher Syndrome (more about that in the About section). This was done at the Helen Keller National Center for Deaf-Blind Youth & Adults on Long Island.

I can’t really explain how it feels to look at a picture of your eyes and see circles that are mostly black. I knew I was losing vision, but I guess I never wanted to really think that I was going blind. I’m holding on to some central vision and some patches of peripheral, but it doesn’t seem like much. I have approximately 10 degrees of vision (out of a possible 180). Life seemed pretty terrible that morning, and I definitely didn’t want to go back to work after that appointment. But I did. And life will go on. And this blog is part of my way to deal with it all.

I navigate New York City, hold down a great full-time job, work on my own non-profit on the side, and soon I’m going back to school for my MPH. I don’t want to stop pursuing my dreams, EVER. I hope to take you on the journey with me. I want to share my experience in the hope that it will help others and keep me going.