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2012-01-02T14:39:00.001-06:00

The Latest in the Battle Over Theater Captioning

2010-12-02T14:37:00.007-06:00

Well, it's about time.

As I've written about on this blog before, I'm among the thousands of Deaf and hard of hearing moviegoers fed up with not being able to understand movie dialogue. Now a group is sueing Cinemark theatres for lack of captioned movies. This is a theater chain that hasn't yet embraced captioning technology like other theaters have. For a listing of theaters currently showing captioned films, visit Captionfish.com.

I thought it would be interesting to compare Cinemark with two other theater chains: AMC Theatres and Regal Cinemas. Unlike Cinemark, the latter two show captioned movies at some of their locations.

Cinemark - The Lawsuit

A lawsuit brought on by the Association of Late-Deafened Adults (ALDA) and two individual plaintiffs claims Cinemark discriminates against hard of hearing and Deaf communities by failing to provide any captioned films in its Alameda County, California, theaters. The suit sees this oversight as a direct violation of the Americans with Disabilities Act (ADA) and California's anti-discrimination statutes, the Unruh Civil Rights Act and Disabled Persons Act.

ConsumerAffairs.com reports that about 85 percent of first-run movies are captioned and compatible with the rear window captioning system when they arrive in theaters. Each individual movie theater has the option of whether or not to install the $10,000 captioning equipment.

Apparently, Cinemark opted to save money at the expense of being accessible to the Deaf and hard of hearing.

AMC Theatres

AMC has nearly 160 theaters equipped with rear window captioning (RWC) units. RWC involves a reflective cupholder device that reflects captions emitted from a LED screen at the back of the theater. Some locations show open captioned (OC) movies, in which each movie has captions printed directly onto the film.

The theater chain provides an online search by zip code service of locations playing movies that are open captioned, closed captioned (rear window captioned) or with descriptive video.

Although AMC has been showing few captioned movies recently in its headquarters of Kansas City, the local Hearing Loss Association of America (HLAA) Chapter is in talks to expedite the return of captioned movie showings. A Kansas City HLAA rep is in twice-weekly contact with AMC to encourage the theater chain to expedite showing captioned digital format movies. AMC's Olathe, Kansas, theater is expected to be the first AMC location in the U.S. to show digital format films with rear window and open captions.

Regal Entertainment Group
Here is the latest on the theater chain's captioning efforts as stated on its Web site:

"Regal Entertainment Group, the National Association of Theatre Owners ("NATO") and the Inter-Society Digital Cinema Forum (ISDCF), film studios, manufacturers and technology designers have agreed and implemented a goal to have all digital standards associated with closed captioning and descriptive audio available for digital servers and projectors in the near future.

"The primary intent behind these efforts is to have 100% of all digital cinema systems being manufactured for theatres contain closed captioning and audio described technology that is accessible to theatre patrons in the near future.

"We also are working directly with manufacturers of closed caption systems that will be able to plug into compliant digital cinema servers.

"While there remains much work to be done, and while we are dependent on third party manufacturers, we are optimistic that acceptable personal captioning system will become available in the near future."

What the Cinemark Lawsuit Means

While the Cinemark lawsuit has captured media attention and has fired up those of us with hearing loss, what difference will it make in the long term? If Cinemark, the third largest U.S. theater chain, can be sued over captions, how quickly will other theater companies heed the warning and make their films accessible to everyone?

I'd like to imagine theaters packed with people with varying levels of hearing, deafness, vision loss and other (dis)abilities. I'd like for 2011 to be the Year of Theater for Everyone.

Join me on Facebook, Twitter, and my new blog LipreadingMom.com as I monitor movie theater captioning.

Advocating with Kids

2010-11-22T15:26:00.002-06:00

Originally posted at LipreadingMom.com

Advocacy is always a work in progress… for everyone. That’s why I decided to include my 9-year-old son and 6-year-old daughter in a Deaf and hearing loss awareness 5K walk/run this past weekend.

We walked with leaders from our local Hearing Loss Association of America (HLAA) Chapter. I use the work ”walk” loosely. My son decided to speed walk the entire time while my daughter followed several steps behind her Lipreading Mom. While walking and signing with fellow walkers, many of whom are Deaf and use American Sign Language (ASL), I used my “third eye” to keep track of my precious children.

After the walk, a Deaf and hearing loss resource fair was set up on the park grounds. I was supposed to assist with the HLAA table, but spent most of the time chasing after my curious kids. I first chased them into a tent set up with an ASL storyteller, who signed the words to popular children’s books. My daughter has always been fascinated with sign language, since she was a baby. At age 8 months, she and I attended a baby-mommy sign language class, and since then she’s taken to the language like a kid in a candy store. So the ASL storytelling held her attention. As for my son … Let’s just say I had to keep chasing after him.

Our next stop was an ASL arts and crafts booth, put on by the local school for the Deaf. My kids transformed two foam handprints into clever magnets depicting the sign for “I love you.” I’ll add these magnets to our eclectic collection of refrigerator magnets holding all their artwork at home.

At the next booth, we learned about a local church starting a ministry program for Deaf and hard of hearing people. Beginning next month, the church’s Sunday night services will be CART captioned (Computer Assisted Realtime Translation) and sign language interpreted. What a Godsend. This would allow Lipreading Mom to attend church with the family and finally understand every word spoken, sung and preached. Hallelujah!

Our favorite stop was the food booth, where we gulped down Sunny D and munched on fruit, donuts and crackers. Entertainment was provided by a very loud guitarist and drummer with a local Christian band. Thank goodness for the ear plugs given away by an audiologist at another booth. Lipreading Mom does everything she can not to expose her little ones to noise that could harm their hearing and turn them into Lipreading Kids.

After 20 minutes of songs and snacks, we ventured to another booth giving away free books and stuffed animals to promote hearing aids. The book “Oliver Gets Hearing Aids” tells about a little hard of hearing elephant getting his first set of behind-the-ear listening devices. Lets just say that Oliver’s hearing aids were bigger than Lipreading Mom’s head. The animated book came with an Oliver the Elephant puppet that storytellers can wear and wiggle their fingers in. Guess who got to wear the puppet and read the book in a silly Oliver voice at storytime that night?

I’m thankful for opportunities, like this walkathon, to share in hearing loss advocacy with my children. Although they always see me wearing hearing aids and sometimes signing to friends, it’s eye-opening for them to see lots of other people in the same boat as Lipreading Mom.

What else can I do to teach them about advocacy?

~*~*~*~*~*~*~*~*

Follow me on my new blog, LipreadingMom.com!

Hard of Hearing at the Holidays

2010-11-18T12:10:00.002-06:00

What are your tips for surviving the holidays with a hearing loss?

Examples:

* Coping with loud family gatherings

* Handling stress

* How to give your ears a "break" during the holidays

* Communicating your special needs to family members

This is for an article to be published here, at LipreadingMom.com and possibly elsewhere. Post them here by December 1 or e-mail me!

The Role of Hearing Helpers

2010-11-17T13:54:00.002-06:00

Meet Emilie, Cody and Jill... my special helpers at church. Without them, I wouldn't be able to teach my six-year-old daughter's Sunday school class at church.

Because my sensorineural hearing loss makes it difficult for me to understand a child's delicate voices, someone must come alongside me to repeat or explain what the child has spoken. I call this person a hearing helper. Some of the ways in which this person helps:

* Pulls me aside to slowly repeat a child's comment or question

* Writes down information spoken by the child, such as their name if a new student

* Assists with behind-the-scene tasks, like gathering supplies, so I can focus on each child

* Reminds children to use quiet voices and hands to prevent unnecessary background noise

* Encourages children to face me when speaking so I can lipread them

* Gives one-on-one attention to special needs children who are mainstreamed in the class

Two Sundays a month, I volunteer with Emilie, Cody, Jill, and a rotating base of other hearing helpers. Usually there are three or four assistants with me in each class. While their primary function is to assist with Sunday school class preparation and hands-on instruction, they are so much more to me. Hearing helpers are my ears, hands, lips, and feet. They allow me to be involved in my daughter's classroom and get to know her friends. Without them, I would struggle to understand everything my students say.

As I shared with one of the parents when she picked up her son last Sunday, it takes a team effort to lead a class.

"You're a great teacher," the mom said.

I shook my head. "Without helpers in this class, I wouldn't have a clue what any of the children are saying."

The mom knew a little about my hearing loss but not the whole story. "Really? How is your hearing these days?"

I raised my hand then swooped it down. "Like this. Going down like a ski slope."

After a short pause, I added, "Without these helpers, I wouldn't be a good teacher."

I made sure to point out Emilie, Cody and Jill.

~*~*~*~*~*~*~

Follow me on my new blog, LipreadingMom.com.

Follow Me on LipreadingMom.com

2010-11-10T22:28:00.005-06:00

I have a new blog!

Go to LipreadingMom.com to learn more about my life as a hard of hearing mom.

Here is the latest post...

LIPREADING MOM'S TOP 15 CONFESSIONS

Time to ’fess up. My ears aren’t as sensitive as they used to be.

I confess that I pretend to hear everything my kids say even when they’re calling each other “stupid” and I don’t know it.

I confess I laugh before a joke’s punch line, not because of a warped sense of humor, but because I didn’t catch the joke’s first sentence.

I confess I wear my hair long to keep my hearing aids from sticking out like Dumbo ears.

I confess that I am unable to hear my telephone ring without my hearing aids in.

I confess that I don’t understand most dialogue on TV without the closed captioned turned on.

I confess that I get irked when the closed captioning isn’t working is turned off.

I confess that most people I haven’t seen in years are shocked when I tell them I have to read lips to “hear” them.

I confess that my older two kids usually act as my ears in the following situations: when a person asks me a question and I don’t respond; when someone knocks softly at my door and I don’t answer it; when the phone rings and I’m not wearing my hearing aids; when my youngest child wakes from his nap upstairs and is crying at the top of his lungs; when anything in the house beeps.

I confess that I have learned to accept my limitations. I will never be successful in making a phone call without some sort of special accommodations (i.e., using a loud-volume phone or speaker phone; asking the person on the other line to repeat themselves 2-5 times).

I confess that being a hard of hearing mom is not my choice. In fact, it can make me downright cranky.

I confess that being a hard of hearing mom makes me smile sometimes, especially when my kids are squealing, whining, moaning, or acting like brats.

I confess that being a hard of hearing mom has changed me. I’m not as quick to judge others who are different than me.

I confess I’m not as impatient as I used to be. I don’t get as frustrated with having to repeat things to a store cashier, to wait in a long line, or drive in rush-hour traffic.

I confess that being a hard of hearing mom has changed me. And I like how I’ve changed.

Ears to Understand Church

2010-11-04T15:25:00.001-05:00

"When we reach the station, that will be it!" we cry. "When I'm 18." "When I buy a new 450SL Mercedes Benz!" "When I put the last kid through college." "When I get a promotion." "When I reach the age of retirement, I shall live happily ever after!"

Sooner or later we must realize there is no station, no one place to arrive at once and for all. The true joy of life is the trip. The station is only a dream."

-The Station, by Robert J. Hastings

Yesterday, I met with an amazing woman named Lisa Purkey. She is a mom of two little boys and the wife of Jon. Both have just launched Nexus Church in Kansas City. Lisa knows me from Mothers of Preschoolers (MOPS) when I spoke to her MOPS group about my hearing loss experiences. She came to me on a quest for information. After hearing me speak before, Lisa never forgot that there are thousands of people in our city who can't hear well. Her mission now is to find out as much about the needs of people who are hard of hearing or Deaf and somehow engage us through Nexus.

Lisa posted this on the Nexus Facebook page:

"I'm so excited that Nexus Church is going to be taking an active role in reaching out to our deaf and hard of hearing community in Johnson County!!! We have some amazing things in store for reaching these people creatively, and not just setting them in a corner for deaf people! We want them to be a part of every aspect... of our church!!! Details to come!!!!!! Can't wait!!!!!!!!!!"

Something interesting about Lisa is that although she can hear fine, she can't see well. In high school, she was diagnosed with vision loss and began wearing contact lenses. All those years prior to getting help, her world was fuzzy. Words on the chalkboard at school were a strain to see, and she squinted to read words on a TV screen. After getting help, Lisa remembers seeing the detail on blades of grass, how the texture and color popped in the sunlight. Her vision was clear... with help.

I've written articles and spoken before what a struggle it is to hear in group settings. Church is among one of those hearing-challenged settings. Without real-time captions at each service, I miss key words in a sermon. I lose the connection with other able-hearing people during the worship and sharing times because I can't lipread all the moving lips speaking into microphones.

The meeting with Lisa opened my eyes to a mission: I want my ears to *hear* everything at church. If Lisa could see so clearly with help after such a long time of struggling, what is stopping me from being able to attend church where I can hear and understand all that is being said?

Examples Lisa and I discussed about ways Nexus Church could help those with hearing issues:

* Immerse yourself in the Deaf and hearing loss cultures. Visit the U.S.'s only Deaf Cultural Center, based in Kansas City. Get to know the staff and volunteers, many of whom are Deaf. Attend a meeting of the Hearing Loss Association of America. Visit the Kansas School for the Deaf and meet teachers and students. Ask them what their needs are with regards to church.

* Provide interpreters for the Deaf and CART (real-time captions) of all spoken words during the service. Words would be projected onto a screen behind the stage. CART is especially useful to people who do not know sign language and can't hear well. It also can help the entire audience understand everything spoken from the stage.

* Visit audiologists, and get to know their lingo. What is the difference between a behind-the-ear hearing aid and an in-the-canal aid? What is an audiogram? What do the words "hearing assistive technology" mean?

I am encouraged from this meeting with my friend, Lisa. It has opened my eyes to someone pursuing a mission and not waiting for the right time, place or feeling. Just getting on that train and taking it wherever it leads... down a hilly path, or a smooth one, or one with all the lows and highs that come from doing the right thing.

What If You Were the Only Person Who Could Hear in a Deaf World?

2010-11-01T15:02:00.001-05:00

Take a moment to watch this video, and tell me if you don't walk away more informed about the communication challenges I face in a hearing world.

I'm Afraid to Talk to You Because You're Deaf?

2010-10-28T21:54:00.003-05:00

It's sad but true. I've observed friends, family and strangers with perfect hearing reluctant to talk to someone who is Deaf. I've seen this happen in restaurants, libraries, the post office and -- yes, oh yes -- church. (For more on that, blogger Michele Bornert of Deaf Expresssions, experienced this prejudice in her congregation and wrote an empassioned post you should check it.)

Something I've committed to doing is to initiate a sign language conversation with people I don't know. These are people I observe signing and/or wearing hearing aids. Granted, I have preschool-level signing skills, but can get by with signing my introduction...

ME: "Hi, are you Deaf?

STRANGER: (nods head)

ME: (grinning, ear to ear) I'm hard of hearing... My name is (fingerspelled) S-H-A-N-N-A...

(awkward pause as I try to remember my signs)

STRANGER: (signs something to me)

ME: (eyes squinted at first, then pretending to understand) Yes. Okay…

(I pause. Stranger signs. I squint, then pretend to understand again.)

ME: (quickly) Okay. Nice to meet you.

Last week at a drugstore, I tested my *ASL skills* with a woman signing to a girl I observed to be her student. The teacher and young person were friendly and seemed forgiving of my signing mistakes, awkward pauses, and bluffing.

I ran into this teacher and her family again at a gift shop the very next day. They were signing to a teenage girl, who I learned was her daughter. I repeated my "Hi, are you..." ASL introduction to the girl who was Deaf. She seemed pleased (or pretended to be) that I had attempted to strike up my hands-on conversation.

Today at the post office, I yet again initiated a signing dialogue. The woman spoke very clearly and I could lipread her well, so I used more of my voice than sign. From the exchange, I learned she teaches at the same school as the teacher I’d previously met. Small world for this Lip Reader.

I am thankful for these two teachers being patient with my rudimentary signing skills. We engaged in brief, but friendly conversation... with a few silent pauses from me.

* ASL = American Sign Language (the language with which I need to become much more skilled)

Would Life Be Better if I Could Hear Better?

2010-10-28T15:22:00.002-05:00

So... Would life be better if I could hear better?

Would I notice the subtle differences in people's voices, or the tones used in their speech?

Or be able to hear the door bell ring or the microwave beep, or the wall clock tick?

Or distinguish instantly who is calling me by listening to voice, not merely glancing at caller I.D.?

Would all the sounds I am no longer able to hear suddenly become recognizable?

The sound of my two-year-old son giggling in his room when I am downstairs.

The guitar music my husband strums behind closed bedroom doors while I'm standing in the laundry room with a dryer rumbling.

Would I hear the soft voice that doesn't come from anywhere but the heart?

God's whispering throughout the day of promises...

That He would never leave me, that He has a plan for me beyond what I can hear.

Would I listen to God, or pay attention to all the other noises coming through my ears?

Let the shouts from family, television, and radio take priority over holy whispers?

Maybe, just maybe God allowed my progressive hearing loss so I could hear those whispers better.

"The Lord says, 'I will lead (them) by a road they do not know, along unfamiliar paths I will guide them. I will turn the darkness before them into light, the rough places into level ground ... I will not forsake them." (Isaiah 42:16)

I don't hear well, but I know this...

Life is better BECAUSE I don't hear well.

Hearing Aids in the Great Outdoors

2010-10-22T15:59:00.004-05:00

Oh, the joys of owning non-water-resistant hearing aids.

This afternoon, I took the kids to a pumpkin patch for our annual trek through nature. A partly cloudy sky and temps in the low 70s seemed like ideal weather for our country excursion. With a stroller for my littlest tyke and a lunch box in tow, we were all set. My kids frolicked through rows of corn and danced on hay bales. All was bliss.

UNTIL...

A drop of water fell on my head. Then more drops. Suddenly, the partly cloudy sky tranformed into a scene from "Twister" (without the tornado). Rain fell so hard, I couldn't see straight ahead. Where were my kids? The stroller? Then I swatted at my ears.

MY HEARING AIDS WERE GETTING WET.

Everyone should remember this important fact about hearing aids: they are not water resistant. A plunge in the pool or a rinse in the shower or rain falling from the sky can make $5,000 hearing aids die.

Without an umbrella or hooded jacket to protect my listening investment, I panicked. First, I rounded up my littest tyke who was feeding corn kernels to a pen of goats and oblivious to pouring rain. My older two kids sprinted for our mini-van.

Chasing after them while pushing littest tyke in his stroller, I whisked off my hearing aids from behind my ears. I cupped them in my hand and made the most waterproof fist possible.

While nudging the stroller forward with my legs, I used the other hand to reach in the lunchbox. I pulled out the only waterproof item inside: a Ziploc baggy filled with pretzels. I dumped out the bag's salty contents. Bye-bye, pretzels. Then I dropped the hearing aids inside and sealed the bag. The lunchbox sat in the bottom of the stroller and appeared to be the driest spot within a quarter-mile of pumpkin patch mudlands.

"Clunk," went the hearing aid-filled baggy as I tossed it into the dry lunchbox.

Then I ran as fast as I could in muddy flip-flops and pushing a stroller, that lunchbox with my expensive listening device treasures inside going "bumpety-bump" all the way to the car. Oh, the joy.

While my kids didn't get their pumpkins, their mommy's expensive, non-water-resistant hearing aids were kept safe in the great outdoors.

Not Deaf, But Close to It

2010-10-18T15:27:00.003-05:00

Every year, I head to the audiologist for a hearing test. Ninety-five percent of the time, the result is the same: more hearing decibels lost. Ten years ago when I was diagnosed with progressive hearing loss, each ear tested at 20 percent hearing loss. The left ear remained stable all these years. The right ear, however, is now at 60 percent loss. This ear hears some sound but can’t distinguish where the sounds come from or interpret the meaning of spoken words. .

I’m not deaf, but close to it.

A few weeks ago, a double-ear infection wrecked havoc on my hearing ability. Sickness destroyed a decibel or two of what I can now hear in the right ear. Voices seem more mumbled, phone conversations more muffled. It’s as if someone turned the volume down a notch inside my “bad” ear.

My kids must repeat themselves more, their questions often met with my blank stares. My youngest child, who at age two is learning new vocabulary every day, screams his words to me. Late-night conversations are especially difficult with my husband since bedtime is when I go hearing aid-free.

Not deaf, but close to it.

Does the strained hearing ability frustrate me and my family? Absolutely. What mom doesn’t want to hear her little boy’s first words crystal clear, or have a heartfelt chat with her husband without the constant refrain of “Huh? Could you repeat that?”

I suppose it’s easier to add up all the stress-induced moments caused by hearing loss since there are so many. I could also count all the sound decibels lost over the past ten years. Or the conversations hindered by hearing loss. Or the increasingly difficult listening situations. I could count all the times I’ve wished and prayed for better ears.

Would life be easier without hearing loss? Without a doubt. Would my life be better? Hmm…

I guess I should count the many people I’ve met who, like myself, struggle with hearing. Neighbors. Parents. Teachers. Artists. Scientists, Teenagers. Children. Babies. Friends. Every week, most notably through my affiliation with the Hearing Loss Association of America, I connect with someone living with their own lost decibels.

Would I have taken the time to get to know all these people if I could hear perfectly? Or would I have tuned them out, passing them by without any empathy or concern for their unique experiences?

I’m not deaf, but close to it. Life has handed me more hearing loss. Now I must decide whether to count my blessings… or focus on the lost decibels.

The precious people I’ve connected with who have hearing loss are to be counted as my major gains.

Promote Movie Theater Captioning

2010-10-01T14:14:00.006-05:00

"Where have all the captions gone?"

That was the cry of those of us in the hearing loss and Deaf community of Kansas City the past three months. For years, the largest theater chain in town, AMC Entertainment, led the way in providing captioned films here week after week. That is, until the dawn of digial movie formats this year. When theaters discarded the 100-year-old tradition of showing 35-millimeter films to all digital format, captioning those films was an after-thought.

Finally, FINALLY... After a summer-long absence, captioned movies are BACK in my hometown. "Legend of the Guardians: The Owls of G'Hoole" (PG) is showing in rearview-captioned and descriptive video formats this week at an AMC theater down the road.

As co-founder of the Hearing Loss Association of America (HLAA) Chapter in Kansas City, I've recently rallied with other members, most notably Terri Shirley, in advocating for these movie captions. Captions allow those of us who are hearing challenged to understand movie dialogue in a way that headphones and asking the person next to us to repeat something can't. In a perfect world, all movies would come in open-captioned format, with the subtitles printed on the film, instead of rearview-captioned, requiring a reflective device that fits inside your theater seat's cupholder.

Our HLAA Chapter's first effort was a recent meeting with Dan Glennon, manager at the AMC Studio 30 theater in Olathe, Kansas, a Kansas City suburb that has since brought back captioned films. Studio 30 is the first AMC location to provide captioned movies in Kansas City that supports the all-digital format. Glennon said he is on board with providing these captioned film choices. However, the summer-long delay in providing captioning service was out of his hands. Thank movie studios producing and delivering the films, outside vendors providing necessary technology for rearview captioned digital films, and corporate red tape for that.

During the meeting, Glennon was presented with hearing loss and Deaf community statistics, compiled by an amazing advocate for the local Deaf and hearing loss community, Sandra Kelly, executive director of the Deaf Cultural Center in Kansas City. Among Kelly's findings:

* Though no one maintains the statistics on hearing loss of adults in the area, because the Kansas School for the Deaf is located in Olathe (and has been since 1866), there is a significantly larger population of individuals with hearing loss that live in the area.

* It has been estimated that there may be several thousand Deaf individuals in the Greater Kansas City area. This does not include individuals who are considered hard of hearing.

* There is an estimated 34-37 millions individuals in the U.S. with hearing loss significant enough that it affects their daily lives.

* Of these individuals, two-thirds of them are under the age of 65.

* Hearing loss within a family affects everyone, not just the person with the loss. Family members without the hearing loss are very aware of businesses and organizations that are supportive of this challenge. It is not only the person unable to hear that is considered the consumer. It includes his family, co-workers and others aware of the support from businesses.

* Visitors to the Deaf Cultural Center have come from every state in the Union, as well as, many countries from around the world. The numbers have more than tripled from three years ago. It would be difficult to estimate how many of these people have hearing loss, but Kelly estimates at least 50 percent. Again, it is the family and friends of Deaf and hard-of-hearing individuals who often accompany these folks.

* Ninety percent of Deaf children are born into hearing families. Parents of these children are looking for equal access to entertainment.

* Last year Olathe was identified in an online survey with Deaf411.com as one of the most Deaf Friendly communities in the Midwest. This is a "draw" to people around the country.

~*~*~*~*~*

I need all of my blog readers, whether you are hard of hearing, Deaf, or hearing, to contact your local movie theaters and encourage them to show captioned movies. Cite the statistics above, or visit any of these sites for advocacy information:

CCAC for Captioning Advocacy Now

Hearing Loss Association of America, Kansas City Chapter

Hearing Loss Association of America - National Web site

I'm Having a Bad 'Hear' Day

2010-09-21T15:05:00.003-05:00

The alarm clock blared at seven o’clock this morning, but I didn’t hear it. My pillow muffled the sound. Turns out, I had rolled on the side with my “good” ear. The one that hears better than the other. The one that hears the alarm clock. The one that lay pressed into the pillow.

I slept through the alarm at 7:00, 7:15, and 7:30. When I woke up, it wasn’t to the shrill beeping clock or the radio dial cranked to full volume, but to the whine of my sweet little girl.

“Mommy,” she cried, “you overslept again.”

I wanted to blame it on the pillow, which had kept my good ear from hearing a blaring alarm clock. But I didn’t. Instead, I decided that I was just having a Bad Hear Day.

I breathed cool air into my steaming cup of coffee while fiddling with one of my hearing aids in the other hand. I put the listening device in my ear and switched it on. Nothing. Dead silence.

Out came the expensive contraption that looked like a sea shell with wires in it. The wires that were supposed to help me hear better. Could it have been a dead battery? Or worse, a hearing aid clogged with a blob of my ear wax? The most disgusting part of the morning was scooping wax out of this ear shell. After adding the fresh battery and scooping out ear boogers, I put the hearing aid back on. Nothing. Dead silence.

“What’s wrong with you?” I shouted at the expensive device. I threatened to throw it on the floor and stomp it into a mess of wires and ear shell plastic. But I didn’t. I just decided I was having a Bad Hear Day.

The coffee spilled between my pant legs as I drove the kiddos to school. My sweet girl chatted on and on about so-and-so in her class and this-and-that at school. I nodded and smiled, marveling at every word she spoke. (I didn’t have a clue what she said.)

The car A/C blasted, the wipers squeaked against the pitter-pattering of rain on the windshield, and my baby son screamed in harmony with a Hannah Montana song on the radio. Plus, my hearing aid still didn’t work.

Stupid hearing aid.

I wanted to announce at the top of my lungs how much I loathed that hearing aid, to yell so loud, it would be heard over A/Cs, windshields, kids, and whiny teeny bopper music. But I didn’t. I just decided I was having a Bad Hear Day.

Trying to make light of the situation, I interrupted my sweet girl to tell her a knock-knock joke.

“Knock knock,” I said.

“Who’s there?” she asked with a smile.

“”Huh?” I said.

“’Huh’ who?” she answered, sweetly.

I squinted at her through the rearview mirror. “Huh? What did you just say?”

And that’s when I really, truly decided …

A BAD Hear Day.

If I Could Understand Movies

2010-09-16T10:40:00.004-05:00

The trip to my local AMC movie theater was a spontaneous Father’s Day present. My two older kids wanted to honor Dad and catch a matinee showing of Toy Story 3. I tagged along since all the Pixar movies were such a hit with our family. My husband and children spent the next two-and-a-half hours laughing at Woody and Buzz’s banter. I faked a chuckle here and there. Because of my hearing loss and the fact that captioned movies are almost nonexistent these days at local theaters, I didn’t understand a word.

As co-founder of the Kansas City Chapter of the Hearing Loss of America (HLAA), I receive e-mails from people in their 20s, 30s and 40s facing hearing loss. Recent reports link increased hearing loss with teenagers. Aging Baby Boomers make up the largest demographic represented at my local hearing aid supplier’s office. How come a movie theater chain can’t accommodate their need for captioned movies so they can enjoy entertainment like everyone else?

Not long ago, some local AMC theaters showed rear-window captioned movies. It required the viewer to place a reflective-mirror device inside the seat’s cup holder, and captions from the theater’s back walls reflected onto the glass. While not ideal since the mirror device didn’t always work well, I could understand movie dialogue this way. A few years ago, I watched an open-captioned version of Mama Mia!, in which the words displayed directly on the film in front of me. This was my favorite movie-going experience thus far, and it was at an AMC theater.

When a member of the local HLAA chapter asked about the decline of captioned movies in their theaters, local AMC representative Dan Glennon responded, “Rear window captioning that functions with our new digital platform will be installed by the end of the month. Studio 30 will actually be the first theatre among our entire chain to have this upgrade completed. Once the device is installed and functioning as expected you will see the ‘CC’ indicators next to the film titles on the internet as well as in the newspaper.” This was written on July 27, and no captioned movies have returned to AMC. Our chapter will continue to monitor this cause and will feature updates on our Web site at http://hlaakc.blogspot.com.

Write, call, or e-mail our theaters and request the return of captions. If all of us do this, then the Deaf, hard of hearing, and hearing populations can enjoy movies together. And I will be able to understand the next animated flick I view with my children.

Advocacy Begins at the Walk-In Clinic

2010-09-08T13:20:00.005-05:00

After several days of a pounding headache, congested throat, stuffy nose and clogged ears, I was in tears. Having sick ears was like poison with my already compromised ability to hear. Hearing aids became useless; all they amplified was the dull rumbling of fluid in the ear drums. And the pounding head made it difficult to focus on lip reading.

So, instead of a highly anticipated date with my hubby, I headed to the least romantic spot in suburbia: a walk-in doctor’s clinic.

A no-nonsense physician sat with her back to me, facing a computer. Her lips moved and I’m sure she had asked something, but all I heard through my sick ears was, “Wah wah, wah wah.” She’d become the Charlie Brown cartoon character that spoke in annoying monotones.

My inclination was to bluff through her series of questions. Nod, say “Okay” a couple of times, nod again. Become panicked about what I had actually said “Okay” to.

The physician’s lips stopped moving, so this was my cue to begin the bluff.

I stopped. Everything from my neck up ached, and I needed help. That meant saying the four words I’d said to my husband countless times when he mumbled something to me.

“Would you face me?” I said to the physician. “Because I have hearing loss and need to see your lips.”

She swiveled around in her chair. Her questions resumed at a much slower pace. She nodded after each sentence, as if by doing so she hoped I understood.

After writing a prescription for what seemed like a decades’ worth of antibiotics, she faced me again.

“So you’re a writer?” she said.

I assumed she’d read it on my medical chart, although I’d never seen this physician before.

I nodded. “I write about hearing loss issues. And I advocate for the hearing loss community.”

More questions from her allowed me to answer the Who, What, Why, Where, and How of Shanna Groves’ hearing loss story. Who had I advocated for? What kind of advocacy work had I done? Why had I started it? Where could someone get more information about my advocacy work? How can others get involved with this kind of work?

The physician’s curiosity about the Big A made me wonder why it had taken me years to advocate for myself. How many medical professionals before her could’ve benefitted if I’d stopped bluffing and started speaking up for what I needed?

Before I left, the physician shared the name of someone she knew with hearing loss and asked if I could contact her. I took the person’s info and promised to be in touch.

I walked out of the clinic with a prescription in hand and a realization. Advocacy wasn’t just about me. It was about me, the physician, and everyone else.

Lipreading Mom Faces The Chair

2010-09-02T14:38:00.006-05:00

As I sat in the patient’s chair gripping the vinyl armrests, a mask-wearing dentist probed my mouth. Her findings nearly busted my jaw: Multiple chipped teeth, a recessed gum and six cavities. One cavity for each year I put off going for a check-up. I tensed even more as she injected anesthesia into my infected gum so that she could clean my teeth. All the while, my five-year-old child watched from the sidelines. I'd brought my cutie pie along to show that kids need not fear dentists.

Only a mom pretending not to have hearing loss should fear The Chair.

Lipreading dentists was impossible, so I delayed the tooth cleanings year after year. I wasn't about to tell them, "Lose the surgical masks!" I was doing a good enough job wearing my own mask of pretense.

I spent six years delaying check-ups until a more convenient time. When I could learn to lip read someone's covered lips. Or when a dental hygenist learned to stop making small talk with her patients. Or---TA DA!---when my hearing loss miraculously disappeared.

Each delayed check-up resulted in another cavity left undiscovered, another hole that ached and flared my anxiety. These holes caught up with me as I dragged myself to The Chair with my preschooler in tow.

"Have you noticed any problems?" the hygenist mumbled.

"Excuse me?" My nails dug into the armrests.

"I said," she repeated, "do you notice any..."

The hygenist's voice sounded heavily muffled behind her blue mask. I knew this was the moment.

I opened my mouth and blurted out, "Would you take that mask off?"

The words were simple, but it was painful to say them. I felt like sliding out of The Chair and fleeing for the exit. Me with my mouthful of cavities and pride intact.

But then I realized my preschooler was there. If I left now, so would my child. If I avoided dentists, so would my child. If I pretended to be fine (and not hard of hearing), so would my child.

I gripped the armrests tighter as the hygenist dropped her mask. Then I spent the next five minutes telling her the story of my hearing loss.

Lip Reader Fans Raise Nearly $3,000 to Help Young Cancer Survivor

2010-08-25T13:38:00.011-05:00

A MESSAGE FROM REBECCA THESMAN, EDITOR OF LIP READER

What an incredible blessing to see so many people support my son at the Carnival for Caleb! Many thanks to all of you who participated and gave of your time and provisions to add to Caleb's medical account. We felt the love of God surrounding us and represented by all of you. Thank you so much for all you have done. You have made a difference in our lives. In return, we pray God's blessings on you.

Rebecca Thesman
www.stayinginhope.blogspot.com
http://www.linkedin.com/in/rebeccajthesman

PHOTOS FROM CARNIVAL FOR CALEB BENEFIT - AUGUST 21, 2010

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PHOTOS FROM OKLAHOMA CITY LIP READER BOOK SIGNING
AUGUST 7, 2010
*$200 in book proceeds, all donated to the
Caleb Thesman Medical Fund*

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LEARN MORE ABOUT HOW YOU CAN HELP CALEB THESMAN
http://carnival4caleb.blogspot.com

My Editor Needs Help

2010-06-25T14:32:00.004-05:00

Rebecca Thesman

A writer's relationship with an editor is sacred. A professionally published book should be edited before it hits bookshelves and, without the editor, a writer's work is not finished. At least, that was my experience with Lip Reader.

Rebecca Thesman is more than an editor; she is my friend, mentor and prayer partner. She is also the mother of a son who has been battling cancer for the past three years.

Last Christmas, Rebecca was laid off from her full-time job and is now strictly freelance. Without insurance for herself and her son Caleb (she is a single mom; he is in cancer remission), this has been an uncertain time for her. I know Rebecca appreciates all of our prayers.

A group of us is organizing a fundraiser to help with the Thesman family and Caleb's medical fund. Carnival for Caleb will be held Saturday, August 21 in Olathe, Kansas, and I invite all of the readers of my blog to attend. There will be carnival activities for kids and shopping, book signings, and storytelling presentations for everyone. Whether or not you live in the Kansas City area, there are many ways you can help. Sponsors, volunteers, prize donations and, of course, everyone's prayers are needed.

Visit the Carnival for Caleb Web site to find out how you can help my editor and her son.

Rebecca and her son, Caleb

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An Update on the Lip Reader Sequel

Rebecca Thesman and I worked together on Lip Reader for several months, and she is now giving up a small part of her life to help me polish the in-progress sequel book, Take Care of the Birds.

When I e-mailed her the first chapter of the sequel book, I was nervous:

Me: "It might help to read the last chapter of Lip Reader again, since the new chapter picks up exactly where the storyline left off. What I am looking for in this edit is a way to flesh out the plot, dialogue and description. It reads too fast and sketchy. Also, could you please use the Track Edit Changes feature in Word? Thanks so much."

I received her comments and edit changes:

Rebecca: "I've used the track changes as you suggested. I purposely didn't go back and read Lip Reader, because a sequel needs to stand on its own as well as having back story for readers who didn't get the 1st book. You did a great job of back story at the bottom of page 6. Lots of action in this chapter and a great lead. One suggestion throughout: since you have so many characters whose dialect will be dropping the 'g,' you might do a Control Find for 'ing' at the end of each chapter. That way, you could automatically change those verbs and gerunds."

Rebecca and I belong to the same writing group and attend church together. I've attended book signings with her and listened to her fantastic workshops on prayer.

For those of you who have ever worked with an editor, it is like a dance. The writer writes, the editor edits. Back and forth. Two steps this way, two steps that way. Without my editor, I can't dance and my book stays on the computer, unpublished.

Thanks for the dance, Rebecca.

Be sure to visit my editor's Web site, Staying In Hope, designed to provide encouragement for people facing difficult times.

Embracing Life and Loss

2010-04-16T17:20:00.004-05:00

As many of you know, a sequel to Lip Reader is in the works. A blog for Take Care of the Birds has been set up with details on this in-progress book.

The past two months have brought challenges to Take Care of the Birds. Two of my family members and a close friend passed away and went to their heavenly home recently. After a month-long hiatus to grieve and think, I am back to writing the book.

Chapter 9 begins with a character questioning her life. Trapped in a dark place, she confronts the choices she made that got her there. Could she have been a better friend, a better daughter, a better person? "What does 'better' really mean?" she questions.

I have thought a lot about this character as I said goodbye to my three loved ones. One of them longed to be in heaven with his wife of 64 years and passed away suddenly almost a year to the day after he lost her. Another died tragically and unexpectedly in a motorcycle accident at the age of 19. And the other was a young wife and mother of three daughters, who refused to give into her fierce cancer until she took her last breath.

Without giving too much away for those who have read my first book, Lip Reader, one of Take Care of the Birds's character not only loses the ability to hear, but to see. She is isolated, afraid, confused. Where is she, and who will rescue her?

Is her rescue too late?

Shanna's Lipreading Life: Writing Lip Reader

2010-03-01T14:45:00.011-06:00

Q: What do you expect your book to accomplish? Is there an underlying message about living with hearing loss that you'd like readers to take away with them?

One of the myths I’ve found with hearing loss is that it’s only common among the elderly. Hearing loss affects all ages, and Lip Reader offers a multi-generational look at hearing loss and deafness. The grandmother is deaf, the grandpa is hard of hearing, and three young characters have inherited hearing loss.

Q: How much of yourself do you write into your characters?

I like to be able to relate in some way to the story’s narrator or main character. In Lip Reader, the narrator is a 12-year-old girl named Sapphie Traylor. She sees the world through innocent eyes and speaks simply. In order to write with Sapphie’s voice, I had to immerse myself into the world of a preteen girl. What were my thoughts and feelings as a 12 year old? How has my perspective changed since then? Doing these things lent credibility to the character.

Me...years ago

Q: How long did it take you to write it and are you planning on writing another one?

I began writing Lip Reader at the end of 2006. A couple of months into the writing, tragedy and blessings happened in my family. My younger sister passed away unexpectedly, then I learned I was going to have my third child. I put the book on hold for almost a year. In 2008, I began working on it again. For 20 minutes a day, five to six days a week, I wrote. Eleven months later, I finished the first draft. I felt God leading the process of brainstorming, writing, and editing throughout.

The sequel to Lip Reader is currently being written. For updates, go to my Take Care of the Birds blog.

Q: Did any events in your life inspire your ideas for the novel?

My dad’s family has genetic hearing loss that has affected my aunt, uncle and two cousins about my age. Since they were born with their hearing loss and I wasn’t, I am unclear if my hearing situation is genetic, such as theirs.

Me and Aunt Mickey

Q: How much of the novel is realistic?

The novel is inspired by my dad’s family, as well as my own hearing loss experiences. The main characters, such as the 12-year-old girl who narrates and the mom character, are purely fictitious.

Q: Is there a message in your novel that you want readers to grasp?

I hope readers — whether they have hearing loss or not — will gain insight into what a family goes through in dealing with either genetic deafness or late-in-life hearing loss. I also hope they will see the beauty in accepting others’ differences and trying to understand them. Finally, I hope that the book gives the millions of people with hearing loss a sense of purpose and joy with their situation.

Q: If you had to do it all over again, would you change anything in your novel?

I think Lip Reader is written the way it is supposed to; I wouldn’t change anything.

Q: Did you learn anything from writing your novel and what was it?

If a person is meant to do something and commits that plan to God, that plan will succeed. What I mean by “succeed” is that it will have a positive impact on both the person and the audience. Lip Reader is an example of how God saw me through an uncertain time in my life — with the death of my sister and the unexpected blessing of a third child.

Shanna's Lip Reading Life: My Culture

2010-02-15T15:26:00.012-06:00

Q: What would you call yourself—hard of hearing, hearing impaired, Deaf, deaf, a person with a hearing loss, etc? Why?

A: I consider myself hard of hearing. I am halfway between the hearing and deaf worlds. I was raised in a hearing family, and my hearing loss was diagnosed at the age of 27. Thus, I identify most with the hearing world.

Q: How did you lose your hearing?

A: The cause is unknown, although I have a family history of hearing loss on the paternal side of my family (an uncle, aunt, two cousins with profound hearing loss). My loss was diagnosed in 2001 after the birth of my first child. I had developed a persistent ringing (tinnitus) in both of my ears and went to the doctor for a hearing test. Progressive hearing loss was diagnosed.

Q: What has been the biggest challenge for you with your hearing loss?

A: Initially, I had a fear of the unknown future. Would my hearing loss make work and relationships difficult? Would I be able to understand my young children’s delicate voices? Currently, my greatest challenge is knowing when to shut up about hearing loss awareness! I am on a mission to inform, educate and inspire people about what life is like with a hearing loss.

Q: What bothers you about your hearing loss?

A: I have difficulty with speech comprehension in most phone conversations and in noisy face-to-face situations. In a perfect world, everyone would speak clearly, with strong articulation, and would come with a closed captioning device attached to their foreheads so I could understand them completely.

Q: Does a hard of hearing community exist? Who are the people within it?

A: I think it does with my tight circle of hard of hearing friends. The people I’ve met through the Hearing Loss Association of America (HLAA) have become my hearing loss community.

Q: What is the Deaf culture, and what is the hearing culture? Where are you, and why?

A: The Deaf culture is a community of people who consider American Sign Language (ASL) their first language. The hearing culture includes people who have normal hearing and have been raised in a predominantly hearing family. In some rare instances, hearing children are born to deaf parents. Would the children be part of the Deaf or hearing cultures? It would be up to the family to decide.

Q: In what ways have you dealt with the positive and negative aspects of your hearing loss? Give specific examples.

A: I have written extensively about the highs and lows of my hearing journey. I have written Lip Reader, a novel about hearing loss. I blog about hearing loss. I speak to large and small groups about my hearing loss. Anyone who has the time, I will share, through the written word or orally, what being hard of hearing means to me personally.

Q: Can you name an instance of when you were ashamed of your hearing loss?

A: When I misunderstand a waiter, cashier or stranger and bluff my way through the conversation—only to be told by the person that I bluffed—that is embarrassing.

Q: How do you want to educate others?

A: I want to write, speak, perform my writings, and advocate through organizations, such as HLAA, about hearing loss awareness.

Q: What does advocacy mean to you?

A: It means asking people for what I need to function and thrive. It means asking someone to repeat a question because I couldn’t understand them due to my hearing loss. It means suggesting that a place of worship provide Communication Access Realtime Translation (CART) or other hearing assistive technology during its services. It means teaching my three children that they shouldn’t make fun of people for wearing hearing aids, being unable to hear well, or being “different.” It means modeling to my family, friends and those around me that hearing loss is best handled with acceptance and grace, not shame and fear.

Shanna's Lipreading Life

2010-01-11T14:31:00.014-06:00

1. When and how did you realize you were losing your hearing?

Shortly after the birth of my first child, I noticed a ringing sound in both of my ears. I scheduled a doctor’s appointment and was referred to an audiologist for a hearing test. It was determined I had progressive hearing loss, and the cause was unknown. I was 27 years old.

2. What was your reaction when you first discovered your hearing loss and how did you learn to accept it?

I was in a state of shock, then denial. I waited two years before wearing hearing aids, even though an audiologist said that my hearing loss was advanced enough that I needed hearing aids from the initial diagnosis. I remember the doctor telling me that if my hearing loss were vision loss, that I wouldn’t be allowed to drive a car without corrective vision care. In essence, the doctor was telling me I would struggle to hear and communicate well without hearing aids. I was scared about having to wear something that the whole world would see, something that showed I was different...

3. How does your hearing loss affect your relationship with your husband?

My husband has become accustomed to repeating things for me. When we are out in public, such as at a restaurant, a server may ask me a question. If I didn’t hear the question, my husband will assist me by repeating or answering the question himself. We have learned to carry on conversations in rooms where there is good lighting and little background noise, although sometimes he can forget by calling for me from another room!

4. What is it like being a mom with hearing loss?

Since my children are young, I have struggled to understand their high-pitched, delicate voices. They often have to repeat themselves. My two-year-old has a very loud yell and will use it if I don’t respond to him. My nine-year-old is much easier to understand because his voice is deeper. Sometimes the older two children ask why I didn’t answer their question, and I remind them that I have trouble hearing and it’s not my fault. Although sometimes I struggle with guilt because I can’t always understand what they are saying.

5. What is your biggest challenge with hearing loss?

Understanding my children’s voices. I can hear them, but I don’t always understand what they are saying. It makes me sad when they get frustrated with me. With time, I hope all of us will be more patient and compassionate with one another. My kids are getting an early lesson in patience with me.

6. Is there anything you do to help you cope with the daily frustrations of hearing loss?

I have struggled with depression. I have a degree in communication, and I thrive on being able to communicate with people both one-on-one and in group settings. In the past, when I couldn’t understand conversation, I either withdrew from the group or dominated the conversation so I wouldn’t have to listen as much! The depression came from not being able to control the hearing loss, and also the anxiety of not knowing how my hearing will be in the future. Since I continue to lose hearing each year, I have to step out in faith and believe that my life will still be okay, with or without my hearing.

7. How has hearing loss changed you as a person?

It has brought me to my knees, realizing that I need to lean on my greatest source of strength: God. Before the hearing loss diagnosis in 2001, I struggled with being judgmental of people who I perceived were different from me. In the past few years, I have been forced to reexamine my perspective. What I realize is that without people having their unique differences, this world would be a very boring place! I also have more compassion for people struggling with various life situations.

8. What would your advice be to others who suffer hearing loss?

Don’t be afraid to visit an audiologist and get your hearing tested. If the doctor recommends hearing aids, do your research on products and include your family in the buying process. The more you include your family with your hearing loss journey, I believe, the more they will understand what your changing life is like. Surround yourself with people who love you unconditionally. Take the time to understand and accept your hearing loss situation the best that you can. Find support from outside your family, such as with local or online hearing loss support groups. I belong to the Hearing Loss Association of America, which has a chapter in Kansas City. Visit Hearingloss.org to learn more about this organization.

The Trip to Little Paw - Part Three

2009-12-17T13:52:00.019-06:00

The Trip to Little Paw, Oklahoma - Part One

The Trip to Little Paw - Part Two

In John Steinbeck's The Grapes of Wrath, a woman is compared to a body of water---flowing straight or curvy but never stopping until meeting her end. The rivers, creeks and women of my Oklahoma upbringing have woven life into parched earth for decades.

Pearline (McMillan) Bartlett, my grandmother and the inspiration behind Lip Reader's Grandma Bebop, stood less than five feet tall as a grown woman. Her education ended at the eighth grade because the McMillan family farm needed any spare hand. Married at 16, Pearline birthed her first child, a daughter, five years later. Three sons and another daughter followed, the first two born ten months apart. The once physically delicate Pearline matured into a strong-armed, wide-proportioned provider of meals, quilts and homespun patience, known by all of us as Grandma Bartlett. She died in a nursing home eight years ago...

Juanita "Mickey" (Bartlett) Dobbs was Pearline's youngest child and my aunt. Her hearing loss developed at age 11 and continued to get progressively worse. Teenage and adult years benefitted from behind-the-ear hearing aids and self-taught lip-reading skills. She raised a daughter, Aretha, with normal hearing and a son, Lee, born with profound hearing loss. Aunt Mickey has been my strongest family link into the world of hearing loss...

Linda (Webb) Bartlett married Pearline's second son, Jimmy. Born and raised in Oklahoma City, Linda met Jimmy while on a date with his best friend. Linda married at 19 and had three daughters, who all grew up on an 80-acre farm outside of Shawnee, Oklahoma. Her middle daughter's hearing loss was diagnosed at the age of 27 and has progressed over the years. Linda is my mother...

Leasha (Bartlett) Strang is one of Pearline's granddaughters and the first grandchild to serve in the U.S. military. In 1991, Leasha made the difficult decision to leave her newborn in the care of Oklahoma family members while completing required service in the Middle East with Operation Desert Storm. She is a former police officer and a single mom who raised two children while obtaining bachelors and master's degrees in social work. The novel, Lip Reader, was dedicated to Leasha. She is my older sister...

Monica (Bartlett) Martin, also one of the granddaughters, enlisted in the U.S. Army less than six months after high school graduation in Prague, Oklahoma. Upon returning from service in Korea, she retired from active duty and became a mother of identical twin daughters and another daughter. The last years of Monica's life were troubled. A month before her 30th birthday, she passed in her sleep on February 9, 2007. She was my younger sister who loved her girls more than her own life...

Shanna (Bartlett) Groves is me. I began writing Lip Reader as a way to cope with my worsening hearing issues. But as the story developed, I realized it could not be about me or even real-life people. I didn't feel right making the book a factual account of the Bartlett family. I'd moved from Oklahoma in 1997. For the next ten years, I never traveled to Southwestern Oklahoma where most of the family lived. Not for Grandpa or Grandma's funerals.

In early 2001, I went to a doctor with a persistent ringing sound in my ears. I had just returned to work from a 10-week maternity leave after the birth of my oldest child. The diagnosis was progressive sensorineural hearing loss, and tinnitus explained the ringing sound. Explanation for the hearing loss was unknown, and I was told I needed hearing aids. I returned to work in shock and with fear. Was I going to become deaf?

Eight months later, Grandma Bartlett died suddenly of a stroke. The morning of Thanksgiving, 2001, my mother called me with the news. I had trouble hearing her voice on the phone. Four days later, Grandma was buried just outside of her homestead in Washita, Oklahoma. I had spent the entire year living in denial about my hearing loss. I don't know if I couldn't believe Grandma was really gone or if I was being selfish.

The day of her funeral, I had flowers delivered to the funeral, and I went to my job. Later that evening, my mother called. I learned I was the only one of 15 grandchildren not in attendance at Grandma's funeral near Washita, Oklahoma. My absence must have stuck out like brilliant sunflowers growing among the dying weeds of Washita...

Lip Reader is about the ties of family. It is about hearing loss and grief and denial and redemption. It is about strong men and women and their children. It is about acceptance and belonging. It is about pride, black sheep and controversy. It is about a young girl's journey with her Oklahoma family. Lip Reader is ultimately an impressionable girl's story because that's when my memories of the Bartlett family are most clear---from my earliest memory as a child through Christmas of 1994, the last time I visited Grandma and Grandpa Bartlett.

My journey with hearing loss begins with the Bartlett family. Lip Reader is a way of saying thank you to my grandparents and finally telling them goodbye 15 years later...

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The Trip to Little Paw - Part Two

2009-12-03T14:33:00.015-06:00

(Note: Read The Trip to Little Paw - Part One first to get an idea about the real-life story behind my novel, Lip Reader. -SG)

Washita, Oklahoma, the inspiration for Lip Reader's Little Paw, was a place I visited for holidays...

My Grandma Bartlett stood in front of a hot white stove with her back to us in the kitchen that used to be a full-fledged diner in the 20s and 30s. Picture "Ma" from John Steinbeck's The Grapes of Wrath...

With her hard-working arms that were stout but soft, that was Grandma Bartlett working at the stove. The smell of pork grease and baking lard filled the tiny home.

"I reckon you'ns gittin' hungry 'bout now," she said, working the palm-size circles of dough on a baking pan. "We's gonna have supper in a lil' while."

My cousin and I had masterfully decorated the two-foot fake tree that sat on the end table by Grandma's front window. I didn't bother admitting I wasn't hungry because the lunch Grandma fed us two hours before was more food than I'd eaten in two days.

I attended college a half hour from my grandparents, and this was the first time I had visited them since venturing out on my own three years before. Again, this was the tiny home I had spent many Thanksgivings and an occasional Christmas...

My dad loved his parents, but he didn't always accompany us on these trips because he worked odd police hours. Christmas with him was a quick bite at 11 o'clock before he left for his patrol shift. My mom usually chauffeured me and my sisters down the bumpy, hilly roads that led to Washita. That's when I got introduced to Thrill Hill...

In Lip Reader, I write about a fictional hill that is so steep and curvy that the characters nickname it Rollercoaster Hill. While I wrote, I thought about my mom punching the gas pedal and sending us in our car flying down Thrill Hill. The rush I got from that hill and the butterflies that formed in my stomach challenged any rollercoaster experience I had had up to that point. Much of Oklahoma land I had traveled on as a girl was flat and monotonous. Southwestern Oklahoma was about as level and arid as the land chosen for The Grapes of Wrath film version...

Imagine the thrill, then, of this solitary hill near Washita. My ride to Grandma and Grandpa Bartlett's home throughout the years had been uneventful and even boring. Until I got to that hill. Then the excitement of being a ten-year-old with her lead-footed mom at the wheel was infectious. It reminded me of why I went to Washita in the first place.

The old diner house my grandparents lived in, as well as other buildings in Washita, were a fascinating study in Oklahoma Depression-era history. The one-room wood-paneled church across the street, which housed everyone from Baptists to Pentecostals over the years, was different from the cookie-cutter red brick buildings that housed the more affluent congregations I had attended. But the small church was as much a part of my grandparents' lives as their home. They lived across the road from the church, and the front window where I decorated the two-foot fake tree gave me a perfect view. I marveled at this old building that was older than my grandparents, yet continued to hold its services every Sunday. I wondered how many families had been married, buried, saved, baptized, and commissioned in that long-suffering church...

Grandma Bartlett smacked her gums and let out an approving "Mmmm!" of the cooked biscuit she had just sampled. "You'ns c'mon and eat now. 'Fore ever'thing gits cold."

I heard a hoarse grunt coming from the head chair at the table. When I walked into the kitchen with my cousin, Grandpa Bartlett sat hovered over his plate, a mug of hot coffee at his lips. He was from the school of marriage in which the women waited on their men from the first serving until the dishes had been dried and put away. Grandpa sat motionless with that mug in his hands, and Grandma pulled the mug away just long enough to top it with fresh coffee.

Grandma Bartlett didn't say anything when Grandpa let out an enthusiastic belch. That was the only sound he made, other than the smacking of lips at the fork and the occasional coughing up of chewing tobacco into the Folgers can on the floor. I forced a fluffy biscuit into my mouth.

That was the last meal I ate with Grandma and Grandpa Bartlett...

The reason I wrote Lip Reader---a book that is as much fictional as it is living, breathing real-life---was, partly, to better understand my grandparents. In the book, Grandma Bebop is warm-hearted and deaf, and she immediately develops a tight bond with granddaughter Sapphie. Grandma Bartlett was also warm-hearted and good to me, but her ears heard better than anyone in the family.

Lip Reader's Grandpa Bebop resembles a real person more than any character in the book. Grandpas Bebop and Bartlett could have been brothers. In my mind, my actual grandfather was the embodiment of what Grandpa Bebop stands for in the book. My grandfather was proud yet humble, a man of faith and temper, a harsh man with a soft core. His hearing loss developed later in life, yet deafness ran several generations in his family.

Why did I not return to their old diner house when Grandpa died four years later or Grandma two Thanksgivings after him? What granddaughter skips her grandparents' funerals, anyway? I'll be back soon with the answers.

Story Continued Here:

The Trip to Little Paw - Part Three