Collision

Pastor Drew Boswell instructs one of his twins, step-by-step through the process of climbing a mountain.

Our church just finished a series of messages called “Yellow, Red, Orange: Imagine the Impact When Church and Family Collide”. Yellow was a message about the church and its place in our everyday lives. Red was about the home and our priorities within it. Orange was a message about the collision of church and home; the result was a new color… orange. Orange is distinctive and the parts mixed have to be “just right”. Orange people have the right balance. The week we discussed the home, Pastor Drew took one of his twins and instructed him on how to safely climb a mountain. It was a fantastic object lesson for doing more than verbally instructing someone.

Not quite to the top yet, but close!

In order to make the biggest difference, in order to have the most lasting impact on the life of another, one needs to commit to hands-on training.

Climbing with someone with more experience makes a difference.

Pastor Drew‘s son made it to the top safely because of the: 1) instruction received by someone more experienced than he was, 2) the strong “spotters” on the floor who were one of the numerous safety precautions, and 3) his dad was stronger than he was and could assist him while also getting himself safely to the top.

Strong Examples

One of the things I like best about attending training sessions at Fidos For Freedom in Laurel, MD, is that teaching takes place between clients as well as client-trainer. There are clients who are culturally Deaf and late-deafened. Some clients use walkers or canes, while others are in wheelchairs or power scooters. New clients tend to gravitate towards other clients who have similar challenges. They are encouraged to ask questions. “Old-timer” clients and newbies both benefit from open communication. Having an assistance dog and a hearing loss is different than having a service dog and mobility challenges.

At the Hearing Loss Association of America – Frederick County chapter, new people attend not really knowing what to expect. An unexpected blessing and support often comes in the form of another person with hearing loss who has more experience. That experience can include things like advocacy, technical advice regarding hearing assistive technology, coping techniques with family and friends, and communication tips. Veteran members are strong examples because they had someone come along side them to assist when hearing loss was new to them.

I love interacting with other people who have Meniere’s disease, have hearing loss, are survivors of brain injury, or have cochlear implants. They are my “peer group”, and we learn from each other and make a difference by sharing our own life experiences as they pertain to these issues. Journeys are much more enjoyable with company.

“Life” Makes Us Good at SOMETHING

We are a sum of our parts; rather, who we are is the result of our life experiences. Not all of those experiences have been positive. In fact, some of those experiences may have been very negative, ushering in a major change in our life’s path. Some of the experiences were very positive. All experiences were used to teach us. I am unique and my life has had plenty of good and bad experiences. My life is only wasted when I choose to selfishly harbor all of those teaching experiences.

Some people think that something must be profound in order for anyone to profit from our sharing. On the contrary – life’s most ordinary lessons can make a difference to someone. This past week someone told me that they “discovered” the culinary pleasure of adding a little Feta cheese to chicken noodle soup. I’ve eaten this new-found delight four times this week! I’ve also had someone tell me that “parenting becomes a spectator sport when your children become adults… they still need you, but not in a participatory fashion”. This shared life experience has helped me as well.

Sometimes people may share something with you that you tuck away as an alternative viewpoint, but it may have only served to strengthen a perviously determined goal or decision. It may have been an opinion contrary to your own chosen morals, standards, beliefs and values. It still served a purpose; if not for any other reason than to strengthen a different decision. Don’t be afraid to share your life, both the mundane and profound experiences.

Imagine the Impact

I have been very up front with others about my faith. I do not believe religion has anything to do with real and lasting faith. At some point in time I determined that I was going to live out my faith. Who I was at church, would be who I was at home. The person my peers see at work, is the same person I am at home. Certainly, I am more “at ease” and comfortable in my pajamas drinking green tea and curled up with Chloe than I am when dressed in a business suit at work. Rather, I am talking about that inner person… the real me. I don’t want to be two-faced in my faith nor in my life.

Imagine how our relationships would change if we allowed God and our priorities that center around our faith, collide with the priorities we have at home and work. We’d all be walking around ORANGE, and more REAL than any past facade we once tried to model for others. If you walk around YELLOW, you have separated yourself from the world to the point you are not interacting or making a difference to those around you. You are very spiritual, but not very faithful. If you walk around RED, you quickly become self-centered and only see your immediate needs and problems. Complete independence isn’t a sign of strength. We were created to be dependent and to need relationships. ORANGE people strike that healthy balance. ORANGE people are influential without even trying.

Denise Portis

© 2009 Hearing Loss Journal

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Operation Christmas Child and Thankfulness

Chloe and I went shopping for items to put into our Operation Christmas Child shoe boxes on Saturday. Armed with the following list, Chloe and I marched into the retail world:

GIFT IDEAS

TOYS
small cars, balls, dolls, stuffed animals, kazoos, harmonicas, yo-yos, jump ropes, small Etch A Sketch®, toys that light up or make noise (with extra batteries), Slinky®, etc.

SCHOOL SUPPLIES
pens, pencils and sharpener, crayons or markers, stamps and ink pad sets, writing pads or paper, solar calculators, coloring and picture books, etc.

HYGIENE ITEMS
toothbrush, toothpaste, mild bar soap (in a plastic bag), comb, washcloth, etc.

OTHER
Hard candy and lollipops (please double bag all candy), mints, gum, T-shirts, socks, ball caps; sunglasses, hair clips, toy jewelry, watches, flashlights (with extra batteries)

As a family, we had agreed to do one shoebox for a girl, and one shoebox for a boy. This year we chose to do items for two children ages 10-14 years old. At some point in the shopping trip, I realized how sobering it was to realize that for some children a pad of paper, pencils, and stickers were considered a luxury item. When I purchased some toothbrushes and toothpaste, the idea really came to settle in my heart and mind. We are so blessed here in the United States. Many items to us are necessities and common staples of our every day life. To children in other countries, those same items may be considered true luxuries and priceless gifts.

For the boy package, we purchased stickers, pads of paper, pencils, crayons, small slinky, small book, pencil sharpener, kaleidoscope, kazoo, skipper jump rope, ball, toothbrush, toothpaste, hand puppet of a triceratops, and some other odds and ends.

For the girl package, we purchased much of the same, but instead of a kazoo we included a set of bells and the puppet was a ladybug.

Perhaps it is because this is the week of Thanksgiving, that I am particular thankful for things I normally take for granted. I’ve often thought about how blessed I am that I live where I do in regards to my hearing loss and Meniere’s disease. I live within “spitting distance” of the Listening Center at Johns Hopkins Hospital, and my cochlear implant surgeon was one of the best in the country. I can easily purchase batteries for my CI, and have access to other assistive listening devices. I live within 65 miles of Fidos For Freedom, who only match assistance dogs with people within a certain radius of their organization. It is one of their commitments to provide follow-up training and support for the life of the dog. Trainers are all volunteers and live locally, so to participate and become matched with one of their special dogs one must live within a certain “workable distance”.

If you are having difficulty finding a way to be thankful this year due to life’s stresses, problems and trials… pack a shoe box for Operation Christmas Child! I think it will quickly help you discover things you are truly grateful for in the end! Plus… you will make a difference to a child who may never know the true meaning of Christmas if not for you! Check out the link and find out where the nearest drop-off location is for YOU!

Operation Christmas Child Link

Denise Portis

© 2009 Hearing Loss Journal

 

Braille Menus

Kyersten has always loved the outdoors... here she is on Lookout Mtn. in Georgia.

Kyersten, my “going on 20” daughter and I, went to Baltimore yesterday. She had a field trip she had to complete in order to earn some extra credit in her 200 level zoology class that she is taking. This has been a TOUGH class for her and she earnestly reasoned with me why she so desperately needed the car to go the National Aquarium. She can be pretty convincing. I had not been in awhile, so invited myself along so that I could spend some one-on-one time with her. Perhaps since we’ve recently visited some colleges on her “short list” that she will be transferring to next Fall, it was still keenly evident to me how precious little time I have left with her before life really changes! She was very willing to endure my company and cheerfully agreed (even before I promised lunch out!).

The aquarium is a great place to be with a CI and working dog. There is SO much to hear, and it can be a great place to practice using some of my special programs like “BEAM” to hear just Kyersten in a din of NOISE. It is good for Chloe, for we do not frequent really noisy places out of habit. It is good practice for her to stay calm and focused amidst all the “merry mayhem”. Towards the end she was wagging her tail at every squealing group of school children, and even met another service dog. Butch was a HUGE black lab that was built like a tank. He was very “lab-like” and friendly. He and Chloe said a brief hello and went on accompanying their partners. Chloe was much more relaxed after that – smile. A harmless moment of flirtation is enough to put the wag in the tail of my hound dog!

A Dolphin Show can be really noisy and tough to hear at with all the echo! Doesn't keep it from being REALLY FUN!

Lunch at the Cheesecake Factory

I gave Kyersten the option of several places to eat there in the Inner Harbor. She gave me one of those “duh” looks that 19-year-old’s are so good at… She loves cheesecake, so I really didn’t need to ask her! She eats a pretty light lunch there in order to save room for what is important. CHEESECAKE. Smart kid, yes?

Even though it was 12:30, we didn’t have to wait in line at all. Perhaps because it was a weekday? The young man asked us to follow him back through the restaurant. The area he led us to looked out over the promenade and one wall was all glass. I made the mistake of glancing around too much and caught site of the ceiling fans in my peripheral. I sort of “toppled” with a decided lack of GRACE into my chair. Kyersten just grinned at me, as she guessed my problem. I situated Chloe under the table, and turned to look at the young man who seated us.

“May I bring you a Braille menu, ma-am?” he asked politely.

I could see Kyersten’s eyes widen across the table.

Without missing a beat, I pointed to my CI and said, “Oh no thank you! I’m fine with this one” (and then pointed down to the regular novel-length menu on the table).

When the young man walked away, Kyersten rolled her eyes and said, “OH BRUUUTHER!”

I just grinned and said, “Hey! He was polite, and I do have a service dog with me. I toppled into the chair… for all he knows I don’t see well!”

Kyersten just looked at me, and looked at the cochlear implant on my head decorated in gold, red and green jewels for Christmas. She then looked at the opposite ear with the prominent BTE hearing aide and bright red ear mold.

She didn’t say another word, but that 2nd eye roll said it all.

Not the first, won’t be the last!

This was not the first time I’ve ever been offered a Braille menu before. I have friends with low-vision or are legally blind. I appreciate the fact that many restaurants have Braille menus!

I also appreciate it when restaurants train their employees “enough” that they have learned to recognize someone with a special need. Oh sure! They might not identify the need correctly, but I truly believe it is the thought that counts! When I have students in my ASL classes do projects like “go to the mall” without your voice and only sign, (“Deaf for a Day“), many come back to class and tell me that they were offered a Braille menu at the food court at various places. We discuss how they handled this and what this may mean.

Hearing Loss is Unique to Each Individual

Hearing loss itself is unique to every individual. The disability is not a “cookie cutter” change in hearing. I get some responses from people sometimes that do not like that I use the “disability” word. I’m OK with that, and respect their opinion and choice to not identify with that word. Personally, I am OK with admitting that I have a disability. I believe it does not strip away any power, self-esteem or pride to admit that. I am NOT, however, disabled. Yet, my disability may not be anything like that another person with hearing loss experiences.

I have Meniere’s disease. I do not meet many people with hearing loss who have Meniere’s. I am bi-modal (one CI, one hearing aid). I am more likely to meet bi-lateral people if I meet someone with a cochlear implant now! (Which I think is JUST TERRIFIC!) What they experience in their hearing loss is different than what I experience. Some people use a “bit of sign”, while others are culturally Deaf and do not use their voice at all. Some people have hearing aids that they do very well with, while others put their own in a drawer and “fake it” through life. I hear very well in quiet to “medium-noise” environments. I don’t even have to speech read anymore thanks to the wonderful technology of my Nucleus Freedom! However, in really noisy environments I do have to speech read even when using special programs. Other people with cochlear implants may do better in noisy situations.

I have had the privilege of participating in various forums, workshops, conferences and conventions. I have seen people with hearing loss really become defensive with other people with hearing loss. You know? (scratching head and really ponderin’ on that) I just don’t get that! So what if someone hands you a Braille menu! Were they genuinely trying to help? Does it matter that they don’t realize your hearing loss is different than their own? Perhaps they do not understand that what works for them may not work for you. Why come unglued and act defensive?

Here are a few real-life examples I have observed:

1. A person with hearing loss walked up to another person with hearing loss and pointed to their wires connected to their body-worn processor for their cochlear implant. “Why on earth would you wear something like that with all those wires showing?” Oh yeah… that produced a positive response!

2. “Bling” on cochlear implants and hearing aids are often disdained by other people with hearing loss.

3. “Why would you go with THAT company for your CI? The one I went with is so much better and their success rate is much higher!” (Should we just be happy someone is HEARING AGAIN?)

4. “I’m sorry, I didn’t catch the last part of what you said”. “What? You have a cochlear implant now, shouldn’t you be hearing better than I am with two hearing aids?” (Yeah… as long as you aren’t talking while crunching raw broccoli, bozo…)

Let’s face it! We will likely meet someone else with hearing loss who has chosen different techniques, coping mechanisms and technology in order to live life to its fullest. They may hand us a Braille menu. Our response should be positive… and let them know we genuinely appreciate their attempt to be helpful. An angry retort, thrown “menu”, defensive attitude and “hearing loss sermon” will not bring anything positive out of their mistake. Relax. Smile. Educate in a positive way.

Denise Portis

© 2009 Hearing Loss Journal

 

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!