I’m speaking at the #LATISM national conference for the second year in a row- very excited about this opportunity. LATISM stands for Latinos in Social Media and it’s a wonderful group of people who are engaged in supporting each other and having an impact. I’ll be speaking on a panel about Latinos and obesity that will focus on the generation of solutions. Our families and children need healthier outcomes, and they need them NOW. I really hope that many people will attend both the conference and this panel. Register here and get 15% off with EARLYBIRD code until August 1st. Yay!
Now on to my other question! Should I bring my cane? Conferences are huge and confusing and you’re constantly navigating in unfamiliar spaces. Since I have been embracing being open about Usher Syndrome, it might be a good personal challenge for me to bring my cane with me. It would open some dialogue and connections with others in a new way. This will be my third time attending the conference, so there will be that awkward moment of “hey, you’ve seen me before but without a blind cane.” There are many repeat attendees who I already know.
One young woman is very inspirational in being open about her disability. Her name is Laurita Tellado and she has spina bifida. She’s an advocate for awareness and has a great blog. Sometimes, she’ll attend an event in a wheelchair and sometimes she won’t. Everyone loves her and interacts with her comfortably, no matter what. It’s a great example to see.
I wonder what it would be like to attend with a cane. It would be easier to navigate the space and the crowds. I don’t have enough experience with it at the moment to feel confident using it, but I am due for more training this summer. I think it takes courage to use the cane as well, since you will appear different and not everyone understands that there are degrees of vision loss other than complete blindness. I will definitely continue to think about this.
What do you think I should do?
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 🙂
You know the feeling. It’s usually a work night. You made plans or signed up for an event but you don’t feel like going anymore. You’d rather go home and veg out. You’re in that moment of whether to cancel or go. Tonight I was in that exact position.
I was scheduled to join a dinner of some old college classmates who all took courses with the amazing Tony Brown.When I left work, it was drizzling. I hesitated for a moment and really considered going home to relax. Why did I want to cancel? It was mostly about my hearing and vision loss. I didn’t want to deal with figuring out where the restaurant was, walking in the NYC crowds in midtown, finding the table in the restaurant, and trying to hear in a group conversation. These small things can be a frustrating challenge for someone like me. Sometimes it feels like it’s easier to just stay home.
However, this blog is one of the reasons I decided not to throw in the towel on this evening. I have been writing about living with Usher Syndrome and being a Latina who overcomes obstacles. I’ve heard some wonderful & encouraging comments from everyone. And I want to live up to my words. Going home would be giving up. There are times in the past when I have probably missed out on great experiences.
So I went. What ended up happening? The crowds weren’t bad (rain kept other people away!), the restaurant was very well lit and almost empty, it was super easy to find the group, I sat next to a friend, and I heard about 70% of the conversation. Who knew? It went much better than I expected- I think I learned my lesson. It’s too easy to stay home, and I know it’s not in my character to do so. I love socializing, enjoying the city, and being active. I don’t ever want to let Usher get in the way of that. Life is short- we have to enjoy it!
Bonus: I highly recommend this Lebanese restaurant, Byblos, to all hearing impaired and vision impaired individuals in the NYC area. There was no amplified music, so it was very quiet. There were no steps and it was well lit with space to move around the tables. Food was delicious and the prices were reasonable too.
When I first got hearing aids at 4 years old, they were NOT cool. I forget what style they were, but I remember wearing something around my neck and a clip on box. Yikes! Later on I got flesh tone behind-the-ear hearing aids. I still felt a little different and a little self conscious about it. But I was a kid, and I adjusted. Eventually, my hearing aids became just another accessory I wore like a watch and earrings.
There are many annoying things about having hearing loss. Sometimes, it seems like you say “What?” ALL the time. But all the annoying and negative things are out the window today. I think there are actually some unexpected perks and advantages to hearing loss.
1. You have an excuse to get close to interesting people- singles, pay attention!
You might be at a bar or at a party or on the dance floor. You might be on an actual date. Since you wear hearing aids, you have an excuse for sitting closer to them and leaning in, or even talking into each other’s ears on the dance floor.
2. You can mute the world at will.
Too loud? Witnessing a relentless argument? Can’t sleep on the plane? Tired of noise pollution? Just take your hearing aids out or turn them off. So simple and easy! Others might actually be jealous of the ability to do this.
3. You can always claim you didn’t hear.
Good for getting out of sticky situations. You were supposed to take out the garbage- you didn’t know! You were supposed to turn in the report today- you didn’t hear that! The discount expired- nobody said it! Who can argue against you?
Do you have any stories about these perks of hearing loss? Any more to add?