On the Road Again…

Denise and Chloe at Covenant College
Chloe enjoyed visiting these colleges, and "tolerated" the long drive.

This past Thursday, my daughter and I headed out on a road trip to visit two colleges on her “short” list. Bryan College is in Dayton, TN, and Covenant College is on Lookout Mtn, just over the TN border in Georgia.

Traveling with a hearing loss can be intimidating, but honestly I’m not new to this! Not to hearing loss, and not to traveling with one. In the past, knowing I had to travel would keep me up nights and worrying about the details weeks in advance. Hearing loss is such a part of my life, I do not really remember life with normal hearing.

Things that Help

I think one of the more obvious things that help me when traveling with a hearing loss is that I make my invisible disability – visible. From wearing bright “bling” on my cochlear implant (currently sporting Christmas “bling”), to wearing a bright red ear mold on the hearing aid in my other ear, I really try to make my hearing loss noticeable. I wear my hair up, and I pay attention. I hear really well with my CI, but I’m also wise enough to understand that late at night after I’ve become fatigued and am standing in a large cavernous, echo-producing foyer of a motel, I may have difficulty hearing! So the reliable, noticeable reminder of my disability only comes to my aid when checking in and reserving a room. Almost instantly, front desk employees “change tactics” and are careful to point out where to sign, wait for me to look up to continue speaking (although I actually hear well when not looking now), and are careful to point for directions instead of simply telling me where to go next.

People must travel with assistance dogs regularly enough now that I never am asked what Chloe does or why she is with me. She is less trouble than “some people’s” kids, so she is only help to me when traveling! Thankfully, at Fidos For Freedom, puppies travel with their trainers quite a bit to expose the dogs to motels, airplanes, etc.

hug
Kyersten and Chloe at Rock City for a short "break" to visit a tourist attraction

When stopping for gas, thankfully one can easily pay at the pump. The few times I had to go inside to grab a bottle of water for Kyersten or Chloe, the “visible reminders” served the same purpose at these places as well.

Why do I Believe Visible is Better?

I know plenty of people who choose to keep their invisible disability hidden. That is certainly their choice, and I am very supportive of “whatever works” for each individual. It is my personal opinion, however, that being up front about your hearing loss is only in your best interests. I have heard some folks say that they keep their cochlear implant or hearing aid hidden because they do not want to be treated differently. However, it seems these same individuals are very vocal in their criticism of people who continue to forget to get their attention before speaking, failures to set up assistive listening devices in conferences or meetings, or in disdain rebuke those who have accents, are gum chewers, mumble, or are soft spoken. I believe that in keeping a visible reminder that you do not hear the same way others do (with amplification, speech reading, or cochlear implant technology), others are reminded to communicate more clearly and with better speaking skills than they might otherwise employ.

chloe1
Chloe at Covenant College waiting for the Admissions Office to open.

I believe that by being visible, I have in many ways become more approachable to others and are more accepting of who I now personally. The moment I decided to become transparent about my hearing loss, my blood pressure numbers began to come down and I became more relaxed and at peace with who I am. Think about it this way… what is your demeanor, attitude, and feelings when in the process of trying to hide something?

loved the wildlife
Lots of critters in the mountains of Tennessee! I had to keep Chloe "tight leashed" to keep her from forgetting her job when on a trail!

Hoping mom doesn’t notice a missing cookie from the cookie sheet that just came out of the oven and are desperately trying to lick the last bit of chocolate chip from your fingers?

Have you ever lied and hoped no one would ever discover the truth? One often has to cover one lie with another… and then another.

Have you ever played hide-and-seek? Your heart accelerates as the person who is “it” draws closer to your place of hiding. You may even hold your breath in an attempt at keeping your hiding place from being discovered!

I believe that deliberately trying to hide something like an invisible disability eventually produces anxiety, unease, and produces a fear of discovery. These are all negative feelings! They do not provoke positive change and influence.

In spite of my bling and wearing my hair up, I still take some folks by surprise. Let’s face it… not everyone pays attention to detail. My husband is one of those people who I can greet at the door when he gets home from work and he will never notice I cut my hair 5 inches or am wearing a new outfit. (I don’t buy new clothes very often either!). Terry just doesn’t pay attention to visual detail. It always gives me a bit of a thrill to see the look on someone’s face who did NOT notice my visible reminders, when I’ve finally had to point to my mouth and say,

“I’m sorry. I missed the last part of what you said because of all the noise in here. I’m deaf and hear with a cochlear implant and just could not make out what you said. Could you repeat that please?”

The person’s mouth drops open and they totally FORGET what they said. Instead they exclaim, “Wow! I would have never known you were death! (Intentional mis-spell here in loving attention of all the times I’ve heard this instead of the correct identification). You are so… So… NORMAL!”

Another reason why I do not want to try to hide my invisible disability, is because I tried “the other way”. Do you know what I felt when something I tried to keep hidden became known to someone? Shame. That shame and embarrassment led to poor self-esteem and anger.

Again, I’m not “preaching” at others to adopt what I have done in order to bring awareness to their hearing loss. I really do believe that each individual must do what work best for them.

This is Who I Am

I am comfortable in my own skin. I don’t believe God reached down and caused me to become deaf. I also don’t believe God is “hands off” and set the world in motion just to sit back and watch everything happen. My life is not God’s Youtube. I believe everything has a purpose. Every good thing, and every bad thing happens in order to grow me. I really believe that! I make choices every single day. Sometimes the choices are small and may only involve what kind of tea bag to grab in the morning. However, many choices involve shaping and molding our character to produce a unique individual equipped to make a difference where I happen to be planted. My choices affect my attitudes and future decisions.

Sometimes our decisions are processes. For example, I did not “wake up” a secure and confident late-deafened adult. I “messed up”, acted out, hid, grieved, griped and smacked people. This was a process God allowed me to experience. The process grew me. I don’t regret the process even though I shed a lot of tears.

I’m still a work in progress! Just because I’m 43 and have been an “adult” more years than I was not, I continue to grow, mature and evolve. I don’t care how old you are, you still have a great deal to learn! We are ALL works in progress. Heck. If I was a “finished product”, God would just take me home!

Denise Portis

© 2009 Hearing Loss Journal

chloe2

P.S. If you do NOT like attention being drawn to your disability, I do not recommend being matched with a hearing assistance dog! People notice the dog as if it were a flashing neon sign!

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6 thoughts on “On the Road Again…

  1. Interesting take on “promoting” our disability – as a teenager I used to be mortified if people spotted my hearing aids and so I deliberately left my hair down. Now I tend to leave my hair down because that is the hairstyle that I have so this is one of the reasons why I have applied for a hearing dog myself – to be more visible and stop people from thinking that I am being rude – but at the same time to encourage people to ask those questions that may not have wanted to ask in the past – to be more social!

    Anyway – still on going through the application process at the moment 😉

  2. What an absolutely phenomenal post! This is a fantastic and must read piece for anyone who wants to know what we all go through on a given day. I am so thankful that I know you and Terry. And I hope that someday, we will meet.

  3. What a very persuasive post on being “visible!” I am one of those who doesn’t like to make my CI visible. As a child and teenagers, I was ridiculed about my hearing loss when I wore my hair up. So, as a result, it made me very self-conscious and still does.

    I still break out in a sweat with clammy hands, accelerated heart rate, etc. when I have to talk on the phone….mainly because of some very bad experiences.

    But, the older & wiser I get, I realize that it doesn’t matter anymore. I am not embarrassed by my hearing loss and came out of denial years ago. I wear my hair up and down now but keep it down for the most part.

    I, too, am in the process of applying for a service dog for several reasons. And have my hair up as I type this comment. 😀

    Laurie

  4. “My life is not God’s Youtube”. Can I use that as my status tonight, please?
    Gosh so many things: visibility, accountability, choices, DEATH (haha! I thought I was the only one who heard people say that and yes folks do, it’s not us mis-hearing!)
    I wore my hair long for much of the time that I’ve had CIs, and only recently stopped with the color (… Read Moreloving the salt and pepper) and chopped it quite a bit and I really love that the processors show more. I always felt like it seemed I was intentionally hiding them. Maybe I was. I started to realize that I wanted people to see them, because I think to begin to know and understand me fully is to know that they are a part of me. Most of the time people look, but don’t ask. I love the looks I get when I’m “ported”; that is, one or the other processor is connected via the proprietary cord that plugs at one end into my processor and the other iinto my iPod or shuffle. So I’ve got these goofy things hanging off of my ears, wire(s) hanging off of them, and a shuffle clipped to my jeans. Ha! I find that only kids, and teens, have the guts to ask what is all that? and then I whip off one and show them all about it. OK I”ll stop now. 🙂 Thanks for a wonderful post!

  5. Good words, Denise :0)

    Tate has always chosen bright blue HA’s, and blue or green or even neon orange earmolds. With his short hair, his aids are pretty obvious.

    As he gets older, he may change, but I agree that making his disability visible helps. He doesn’t mind answering questions about his hearing and his equipment, and it sure helps other people remember his ‘situation’.

    His soccer coach commented to me that Tate has helped him slow down in his coaching style, and in how he relates to the boys on the team :0)

    Julie

  6. You’ve written another great post! You ave been a real inspiration to me and have inspired me to stop trying to hide my hearing loss and my hearing aids. Now I often wear bright covers on my hearing aids and my new ear molds have gold glitter in them. The reactions that people have range from puzzled to tickled. Complete strangers have come up to me and asked about my hearing aids. I’ve had some great discussions with people. Thank you!
    Sonya

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