Hearing Hail

Last Friday we had a terrific storm that dropped some nice size hail in our area. Normally the big storms come through at night and I’m asleep in my bed oblivious to the sounds of nature as my CI is in the “Dry ‘n Store”. For this storm, I was awake… and really enjoyed hearing it!

Our dogs couldn’t really understand my fascination, but they stood by the front door with me while I watched and listened. I was even able to get my son away from his computer for a minute to “come and listen”!

Denise Portis

© 2009 Hearing Loss Journal

Falling on STEP 2

Chloe on stairs in Leesburg, Florida
Chloe on stairs in Leesburg, Florida

Not All Stairs Are Created Equal

Sunday, my kids were scheduled to help clean up after the service. In an effort to save time, Kyersten handed us her library books that she had planned to return through the book drop. C. Burr Artz Library is only about 1 block from where our church currently meets. Books are often returned on Sunday since we are in the right vicinity. As it was Father’s Day, I was anxious to “shave off minutes” where I could and so agreed to drop them off for her. We were in separate cars, and the plan was that Terry and I would drop off the books and then reserve a table at Outback. Outback normally opens at 4 PM, but on Father’s Day they were opening earlier – a fact Terry was very excited about since the choice was his given the special day. Terry and I left the kids cleaning up the foyer and coffee corner, and hurried to stop by the library before proceeding to Outback.

C. Burr Artz Library in downtown Frederick
C. Burr Artz Library in downtown Frederick

It may be difficult to see from this aerial shot of the library, but the book drop is to the left as you face the main doors. There is a set of stairs you cannot see, and a handicap accessible ramp leading right up to the book drop. Terry pulled into the circular drive in front of the library and the plan was for me to hop out, drop the books in, and hop back into the van. Sounds deceptively simple, correct?

I hopped out after telling Chloe “quiet” and “stay”. She tends to have a cow when I leave the vehicle without her. It rarely happens and only when someone else is in the car. Even so, she behaves as if I’ve left her in a foreign country! In order to keep Terry from having to listen to her belly-ache, I had high hopes my “quiet” would keep her calm for the several minutes it would take to drop the books into the slot. After all, she would be able to see me the whole time, and I would be no more than ten feet away.

There were only 4 big books, and easy to carry under my left arm. I approached the stairs and considered my options. Funny how having a balance disorder forces you to look at something as simple as a short staircase in a new light. The day was sunny and I am less apt to be dizzy on clear days. I was momentarily distracted by the appearance of a young man I go to church with as it seems he walked to the book drop and beat us there! He made a comment about that fact, and I grinned and waved goodbye.

My world tends to rotate counterclockwise. This is actually a huge boon in my humble opinion, as most people walk to the right on sidewalks, stairwells, etc. This means my strongest side… my right side… is closest to the handrail and “checks” my skewed impression of things moving towards the left. I confidently stepped up to the staircase.

Decisions to Make on Step 2

Within one step I found myself sprawled out in the stairwell. I grimaced and pulled myself back up and took inventory of the various scrapes, abrasions and new bruises. I felt an immense relief that I fell on STEP 2! At least I fell “forward” instead of “backwards” and didn’t have very far to fall. If I had been on step 5, it may have been worse as the fall would have been farther. If you fall IN the staircase, your fall is cut short by the slant of the stairs. (Are you grinning? Hey these things matter, believe me!)

“OUCH”, I muttered.

Now as falling is as much a part of my day as breathing, I really do not tend to sit around contemplating the fact that I’ve just fallen… again. I could hear Chloe “losing it” in the idling van behind me. A dog’s bark comes in loud and clear with a cochlear implant. I gathered up the strewn books, made it up the final stairs and dropped them into the book drop. Every time I use the book drop, I’m reminded of the time my son told me that it “talked to you” when you fed it books. I believed this for a number of years until he overheard me talking about our book drop one day and figured he’d better set me straight that he had been pulling my leg. Ornery little booger… anyway, I digress:

I returned to the van, hopped in and buckled up. Before I could say anything, Terry said,

“Good night, Chloe was NOT quiet while you did that. She cried the whole time!”

I sat there contemplating that comment a moment, perhaps hoping he’d notice my bloody knuckles and disheveled appearance. I’m not a patient person and so blurted out,

“Well gee it could be because I dropped out of sight when I fell on the stairs!”

I can only imagine what poor Chloe saw from her perspective inside the van. Wisely, Terry cluck-clucked like a good little mother hen and was appropriately conciliatory about my new “fall down and go boom” scratches.

Stairs are not all the same. A new discovery for me has been the realization that the width of the stairwell, angle of the slope, width of the stair itself, and whether or not the stairwell is “open” or “closed”  has an effect on perception when you have a balance disorder. You can learn the “feel” of a familiar stairwell; for example, I traverse the stairs at home at a pretty good pace and rarely fall even on a rainy day. (I might clarify that I rarely fall on the STAIRS at home… grin!). When I come to a “new” staircase, it is wise to take some time and check out the “lay of the land” so to speak!

We made it to Outback and reserved a table for four. Chloe went under the table and rested her head on my foot. She draped a heavy paw over my opposite foot… yeah I got the impression she wasn’t going to let me get very far without her again!

The Decision is Ours

Sometimes I wish life’s decisions were just made FOR me so that I could get on with living life. However, we all know that making decisions is part of a growing process. I don’t for a moment believe that God forces decisions on us. His word makes it pretty clear that we have a free will. We make the decisions even though He has the power and wisdom to make them for us. God is not a dictator, and much like a loving parent He allows us to make choices that may ultimately cause us pain. Even when it is clear we have made a “poor choice”, we still are able to learn from our mistakes.

I believe we can ask God for wisdom when we make decisions, and that it is wise to seek the counsel of others. In the end, we are left with a choice. Some decisions my family and friends have been faced with in recent days include:

“Do I take this job opportunity, or wait for something better?”

“Do I apply to this college, or another even if it is farther away?”

“What will I major in?”

“Do I buy this used car and clean out my savings account?”

“Do we remove my brother from life support?”

“The company is closing… should I work until the doors close or immediately start to seek a new position?”

“Do I go for a consultation for a bilateral cochlear implant?”

Granted, many of our decisions are not life-altering. I inwardly shake my head in exasperation when I hear people piously declare that they need to “think and pray about” whether or not to make a simple decision. I believe God gave us discernment to make decisions on whether or not to buy Kraft or the ingredients for homemade mac & cheese. Do we take the long way to Walmart or the short-cut and risk heavy traffic? I have heard people who have the time, means and talent try to determine if God wants them to serve in some capacity or another. For goodness sake… just serve! We can’t all be ushers, greeters, or nursery workers, but every individual can be “used” in some fashion. Don’t dare to call something God gives you to do “small” or “unimportant”.

I have made decisions about important things before only to discover rather quickly I have made a mistake. When I make a decision, I try to keep my head up and eyes focused for further direction and confirmation. By staying in a state of awareness, I can more quickly discern if I’m on the right path. If I’m not, I should come to that conclusion fairly quickly. Instead of being bummed about having wasted time, I make necessary adjustments and continue with a new plan of action. I feel an immense relief that I fell on STEP 2!

What is far more difficult is when you discover a mistake after a greater period of time has gone by… perhaps even years! You may feel incredibly “bummed” that you wasted so much time on the wrong path. Perhaps the wrong decision has you bearing new consequences even after adjusting and finding the right path. It’s hard to fall on STEP 5. Taking a fall late in the game, is still a fall “forward”. We can learn from our mistakes. Experience can be a great teacher.

As a parent of an 18 and 19-year-old, I offer advice WHEN ASKED but then allow my children to make decisions on their own. I think we should ask God for advice, for discernment, and for clarity. After I make a decision, my Heavenly Father sits back and watches far more attentively than a hound dog in an idling van. He may “bark” a warning, or alert others that care for me that I am in trouble. He may see me make adjustments and then fine tune my own decision so that I can continue on life’s path. May we all learn to make decisions with more confidence!

Denise Portis

© 2009 Hearing Loss Journal

Hearing at the GYN

chloe at door

Chloe is so accustomed to going everywhere with me, imagine her shock when I put her in her crate this morning to head to an early morning doctor visit! She goes to all my doctor visits with me, but as I’m still recovering from a sinus/respiratory infection I chose to leave her home for this particular visit as it is harder to keep track of her at the GYN’s office. Wouldn’t you know when I get there they all want to know where Chloe is? (I brought her last year).

Hearing at the Front Desk

The women’s medical plaza that I go to for my GYN visit is a big beautiful place. As you walk in the door, you enter a huge atrium and are completely surrounded by glass. It’s a huge, cavernous place and the echo off the rock, tile and marble is frustrating if you hear with a cochlear implant. I normally do pretty good. However, if you factor in that this is a OB/GYN office, there are various newborn babies crying in the waiting room as “mom” awaits a post-natal appointment with her doctor. There is a wonderful medical television service that discusses various “hot” topics among patients and provides nifty “quizzes” while you wait. They aren’t captioned, but I do really well if I’m sitting within 15 feet or so. However, if your goal while standing at the check-in desk is to communicate with the ladies behind the desk, that added background noise is not really “welcome“.

I asked for a couple of repeats as the friendly ladies at the desk … TALK to their desk as I’m checking in and providing responses to various questions. I happened to spy my chart open and so at one point after the lady again asked something of her DESK, I quickly reached down and tapped the card stapled to the front of my chart. I made the card myself and so easily recognized it. It has a picture of my smiling face and my cochlear implant with sparkly BLING above a paragraph explaining that I hear with a cochlear implant. It is very helpful if you face me when you speak so that I can pick up any visual cues and/or read lips if I miss what you are saying. The receptionist read where my finger was still pointed, looked up and beamed a big smile at me.

“Sorry about that!” she grinned.

“Not a problem”, I grinned back.

(They are the grinning’est office I’ve ever been in… )

Calling my Name and the Nurse’s Station

Because I’m concentrating and paying attention, I don’t have any problem hearing my name called. Sometimes I see other people in waiting rooms and they are deeply engrossed in a magazine, book, or their cell phone (grimace). I’m amazed that their name being called can bring them out of their “fog”, and to the realization that it is now their turn. I guess I’ve had a hearing loss so long, I don’t completely understand how people “hear without trying”.

So back to the nurse’s station I go and I get to go pee in a cup! That’s always such a joy (rolls eyes). Next… on to a room and the nurse asks me questions about my paperwork and takes my blood pressure. 128/76 which is VERY good for me when I’m in the doctor’s office. I monitor it at home as well since hypertension runs in my family, but normally when I go to the doctor my pressure is UP. I guess that means that although I’m smiling it’s not my favorite place to be? The nurse then tells me to “undress” and to remember the robe opens in the front and hands me a paper “drape”. (OH JOY). I repeat everything in order to make sure I understood correctly. I mean… who wants to get THIS wrong?

LOVE MY NEW DOCTOR

I have a new doctor because my old doctor of six years left the practice. Her name is Denise, so ya know… she must be pretty good! (smile). Seriously, though she was very thorough and was great about facing me and talking in a normal tone of voice. She asked me about my CI, and was pretty fascinated by the technology. She was very “game” for my request of “how to do this” as I’ve discovered a tried and true practice of how to talk to a doctor when your feet are in stirrups and you have a hearing loss.

I left my email at the check out counter so that that they can email the results to me. The receptionist at the check out desk said “no problem”. I explained that I hadn’t put my email address on anything, and could I write it down for her? Again… no problem, but hey! I’ve walked away before and then they never contact me!

As I was leaving, I felt what I’m sure ladies with normal hearing felt. Thank GOODNESS this only happens once a year.

Denise Portis

© 2009 Hearing Loss Journal

A Strong Bond

Tethered together helps to create that bond...
Tethered together helps to create that bond...

You Want Me to WHAT?

When I first started working with Chloe over two years ago, one of the first things my trainer told me was, “Chloe is to remain tethered to you at all times. Where you go, she goes… for 30 days”.  She was to be at the end of my leash and if I needed my hands free, she had to be tethered to me. No one could pet her, feed her or interact with her but me for 30 days. (It almost killed my family!)

If I did laundry, Chloe did laundry. If I fixed supper, Chloe (on a longer leash and out of harm’s way from the stove) fixed supper. If I went to the bathroom, Chloe came to the bathroom in a stand/stay. (You don’t want a service dog laying or sitting on public bathroom floors – EWWW!). Needless to say, it was probably harder on me than it was her. She was trained to be with someone 24/7. I had to learn to be responsible for this canine at the end of a four foot leash.

It’s amazing how someone could overlook a dog the size of Chloe, but it does happen. People look over her head and come close to tromping on her at times. A friend of mine is training her Great Dane pup as a service dog. I would like to think that Kenai could not be overlooked even in a down/stay!

Now Over Two Years Later

Chloe is rarely out of sight. At home she doesn’t wear her vest, but I still rely on her “working”… her hearing alerts throughout the day. On a day like today (pouring down rain), I need her to retrieve things when I drop them too. I am almost to the point of believing Chloe actually knows to stay a little closer on a rainy day. You wouldn’t think a dog would pick up on that but you never know!

If Chloe loses track of me, for example a squirrel caught her attention outside so she stands to stare while I head downstairs to get a load of laundry in the dryer, she races to find me as soon as she realizes I’m gone. If a gate is up, or door closed she’ll howl her anxiety of the fact. It’s created a rather unique bond between she and I. Honestly, on the days she is in her crate and not at the end of a leash has me feeling like I’ve left my right foot at home by mistake. There are infrequent times that Chloe isn’t feeling well and if I find I have to leave home, she remains in her crate. There have been a few times that she had to stay at home when we were going someplace she could not go safely. (For example, a zoo!) When we are reunited, you would think it had been a month since she saw me last and not a couple of hours! The bond we share serves its purpose, for a service dog and partner should have a close bond in order to establish a healthy working relationship.

It wouldn’t work with people!

Perish the thought should a person have to be leashed to another person for a “30 day bonding period”! I’ve been married for 23 wonderful years to the same man. I wouldn’t dream of attaching myself to him and staying in his vicinity indefintely. We’d strangle each other! (grin) Dogs who have been trained to assist a partner in some fashion do not seem to mind the constant companionship. They thrive in this atmosphere. Perhaps this is why dogs make such terrific service animals… they love to be with their partners.

Two great organizations that you can find more information about assistance/service dogs are:

Assistance Dogs International: Click here

International Association of Assistance Dog Partners: Click here

What the ADA says about service dogs: Click here

Denise Portis

© 2009 Hearing Loss Journal

If I’m Part of a Majority, Then What is Our Identity?

Denise and Chloe sit next to the Potomac at Harper's Ferry, WV
Denise and Chloe sit next to the Potomac at Harper's Ferry, WV

According to data provided by the National Center for Health Statistics (NCHS, 2006)), 37 million adults in the United States have a hearing loss. This is approximately 14.9% (2007) of persons over the age of 18 living in the United States. Gallaudet Research Institute (2007) states that anywhere from 2 to 4 adults out of every 1000, is “functionally deaf”, but of that number more than half became deaf after the age of 18-years-old. (NOTE: this would be after the acquisition of oral language). As many as 22 out of every 1000 adults in the U.S. consider that they have a “severe hearing impairment”. (Their hearing loss affects their lives and impacts the way that they communicate).

Who am I?

I began losing my hearing when I started having children. At the age of 25-years-old when my daughter was born, I have a very vague and fuzzy memory of thinking I may have a cold as speech sounded muffled to me. At the age of 27-years-old, my son had come along as well and at that point my husband and I both knew that something was up with my hearing. I went to an audiologist and was diagnosed with a moderate hearing loss… “did I want to buy a hearing aid for my ‘worse’ ear?”

Although I am deaf (with a small “d” as opposed to the capital “D” for culturally Deaf folks), I don’t consider myself deaf. I don’t think it’s a matter of denial either. I speak with my voice, and use a cochlear implant and hearing aid to maximize what I hear. For me… this is “normal hearing”. My “new normal”. I’m comfortable and happy with what I hear.

I know sign language, but it is highly unusual that I do. I learned ASL in college because I had two friends in my dorm who were culturally Deaf. I’ve been learning sign and taking classes ever since. I don’t use sign language with other hard-of-hearing people because the vast majority of them do not use sign language. Think about it for a moment. If like most people who lose their hearing, you do so after having learned oral language… won’t you try to continue to communicate in a way that more closely resembles the way that you did before your hearing loss? On top of trying to live with a newly acquired disability, would you want to learn a new language including it’s syntax and grammar, only to accomplish being able to sign to other people who happen to know sign? Doesn’t make sense does it? That is why the vast majority of people who lose their hearing turn to technology, surgery and/or reading lips.

Is ASL a bad thing if you are an oral deaf adult?

I’ve been to numerous hearing loss conventions where the attendance was anywhere from 500-800 hard-of-hearing people. These conventions often hire interpreters for the twenty or so people who use ASL as their primary means of communication. CART (Communication Access Real-time Translation using a court reporter) is also usually being paid for and the many workshops and sessions are also looped or have infra-red technology so that people with t-coils on their hearing aids and cochlear implants can hear more clearly. The small nucleus of folks who use primarily ASL tend to “hang out” together at these conventions. I have seen some very strong bonds and friendships develop. However, they are also isolated at times because they cannot speak to the hard-of-hearing majority who do not use sign. Sure! You can write notes, but I’ve rarely seen the effort made.

So should a HoH (hard-of-hearing) person learn ASL? My personal opinion is that learning a little bit of ASL is a good tool to use at home when you happen to have your hearing aids or cochlear implant out… or should your batteries die. Actually, HoH folks tend to learn Pidgin sign language, or exact signed English. They tend to sign exactly as they would speak in English (which isn’t ASL). I’ve been trying to talk my HLAA (Hearing Loss Association of America) chapter into doing one meeting on “often used phrases in ASL”. I believe knowing these phrases at home will facilitate communication in the situations I mentioned above. It can also be fun to learn a “hand full” of sign. However, most HoH people do not try to use sign language outside the home when they are at work, church or in public. They normally read lips, try to set up ideal listening environments, use technologies available, and often have hearing aids and/or cochlear implants.

I get a little aggravated when I make a doctor’s appointment and they offer to set up “Deaf Talk” for me since my chart is flagged with “deaf”. First of all, I’m on the PHONE making an appointment with them! I explain that I use a cochlear implant to communicate and that I speak English and prefer oral language. I suppose my preference is unusual in that I actually teach ASL as an alternative foreign language part-time. However, I do not associate myself with the Deaf (note the capital D) as I use my voice to talk in public. When I had jury duty this last year, the Frederick County court system had a CART reporter for me to use during that time. It was a very positive experience for both Chloe and I, as the courthouse doesn’t get a lot of service dogs either.

Having a CI and meeting a Deaf person

For lack of a better way to explain it, I have been “mistreated” far more often by the culturally Deaf than I ever have been by people with normal hearing. I’m not sure if it is distinctive to our area of the country, or if the attitude is nationwide now. However, it seems the culturally Deaf as a whole tend to feel pretty threatened by cochlear implants. I suppose I make it worse in that I wear “bling” on my CI, and my hearing aid has a bright red ear mold. I wear my hair up in part, because I really am NOT ashamed of my disability, but also because it helps me in the long run should I miss something someone says. They can immediately see that I “hear differently”. Many culturally Deaf are afraid that if those born deaf are implanted between the ages of 10 months and 2 years (indicative of the current trend) that their very culture is being threatened. Nine out of every 10 infants identified with hearing loss are born to hearing parents. These parents are often choosing the safe, non-invasive surgery of a cochlear implant to give their child the best opportunity at oral language. I don’t believe ASL is in any danger of becoming extinct, however,  because there will always be Deaf children born to Deaf parents who chose ASL. The Deaf have worked long and hard for equal access and equal rights and have a rich history and long-term success at being identified as a culture.

I have been stopped in stores and handed notes by the Deaf asking why I would choose a cochlear implant. “What is wrong with Deaf?” I put the notes down and sign to them (making their eyes pop open wide), and explain that I was born with normal hearing and that my choice allowed me to continue to participate in the same way that I was born. Some get angry and stomp away, and some try to argue. Only one or two have ever said that I had a right to my choice and that they respect that. The vast majority of encounters were not “pretty”. Most encounters involve the middle finger! (from them… not me!) I’ll never forget waiting for my daughter at Pet Smart, and a Deaf couple stopped and pointed to me and began signing to their son (who was hearing I believe) that “sad, not right. people embrace ‘who they are’, God finish create – appreciate, accept”. I signed to the parents and little boy, that the only “shame” was when people could not make individual choices that they feel is in their own best interests and that choice be respected by others. (At least they had the grace to turn red).

Don’t get me wrong. I love ASL, and use it far more than many HoH people do. However ASL is not my native language. It is not the language of the group of Americans with hearing loss that I have chosen to identify myself with since losing my hearing.

Why are the oral deaf not as visible as the culturally Deaf?

The culturally Deaf have learned to stand up for their rights and have learned to be proud of who they are and accept it without reservation. The HoH crowd, however, tend to buy the hearing aid, and then refuse to even acknowledge they have a hearing loss. They often try to keep it hidden and rarely admit to someone that they may be struggling to hear in a poor listening environment. They may rarely disclose that they have a hearing loss at work, church, etc. They often do not identify with even having a disability. Why is this I wonder? HLAA and AGBell are wonderful organizations for those with hearing loss. Yet, the vast majority of members are those whose hearing loss has become so poor, that it has really begun to affect their lives. In desperation they reach out for the support and information that they need. I often wonder why those who have a mild to moderate loss never seek out organizations like this? I suppose it is because they “get by” just fine. If their hearing loss is not progressive, they choose to live life without the added help and membership of organizations like this. I cannot cast stones, for I did not seek out help until my hearing loss had reached the point that I needed help.

I was pleasantly surprised a couple of weeks ago, to attend an open-captioned Star Trek movie at our local theater. The room was packed, and I only saw a handful of people signing. I saw plenty of hearing aids and cochlear implants. I think it is so important to support showings of feature films with open-captioning. I always thank the theater manager in person or via email. Many in attendance were the hearing spouses, family or friends. My children have grown up with closed captioning, and actually have trouble watching television without it. I never have to twist arms to get my hearing family to attend an open-captioned movie. When you’ve distinct Russian accents and alien tongues in a movie like Star Trek, you can bet that those with normal hearing got more out of the movie thanks to open-captioning!

Many of the organizations who serve those who have a hearing loss and are oral are in financial difficulty. They’ve been that way for over a decade and with the current economy they aren’t due for a major influx of cash or membership. They often have difficulty obtaining grants. My personal opinion is that they should do a major overhaul in the way they reach out to those with hearing loss. They need to change the way they try to raise an interest in order to gain membership. The majority of people with hearing loss do not have a significant loss. These organizations certainly shouldn’t turn their backs on those with significant hearing loss, but new programs and ideas should center around how to raise awareness among those with a mild to moderate loss. Things like the hearing aid tax credit are a step in the right direction as everyone will appreciate some financial help for the expense of hearing aids. The only problem with this tax credit, is that it will be years before it is available to all age groups regardless of their health coverage. I believe more effort should be in providing information to this largely untapped group. What can be done to provide helpful information to this group? What programs can be developed to help them at work, church, and in public? I think if the struggling non-profits who are membership based reach out to this group, it will help to raise awareness. How could it not? The majority of those with hearing loss (those who are oral), will be finally identified as a cohesive group of individuals striving for equal access, and recognition. How do you help a group of people who want to remain invisible, to see the value in becoming a visible and active group? I don’t know the answers to these questions.

I sign when I misunderstand

Although I identify with the oral hearing loss community, I have something rather humorous to share. If I am trying to communicate with someone who has a heavy foreign accent, or with someone in a very poor listening environment (like a mall or restaurant), I tend to sign while I’m talking. It really tickles my kids, for I have tried to communicate with someone who only speaks Spanish and found that I started to sign and voice when I discovered I couldn’t understand them. My daughter has told me that she can tell it is totally unconscious, that she can see me just naturally start to sign when I cannot hear well or understand someone’s speech. My family has actually learned to step up to help when they see me signing as they know that I read their lips and “hear their voices” better. They know if I start signing, that I’m not hearing very well. Sometimes I sign when I’m really tired… fatigue causes me to not hear as well. I asked my husband (who has devoted six years of his life to the hearing loss community in the past) why he thinks it is that I sign when I’m not hearing well. He’s a psychologist and likes to be asked “what do you think?” He believes that it is not that I am switching identities or loyalties by starting to sign in a “pinch”. He thinks it’s a subconsious decision and acknowledgement that I’m not hearing well. He said that other HoH people who don’t hear well stop and say “huh?” or “fake it”. He said that because I know ASL, I start to sign. He’s stepped up to wide-eyed friends with normal hearing and simply said, “perhaps you should find a quieter place to talk… Denise is having trouble. See? She’s signing!”

I do wish the oral hearing loss community could erase the stigma associated with hearing loss. Would it be that we could develop a positive internal locus of control and believe that we are valuable and viable adults in spite of hearing loss. I wish… I wish we could REALLY find our voice.

Denise Portis

© 2009 Hearing Loss Journal

Lip Reader

lip reader

Who is Shanna Groves?

Shanna Groves was diagnosed with progressive hearing loss at the age of 27 after the birth of her first child. She has written about her hearing journey in Hearing Loss Magazine, The Kansas City Star, MOMSense, and the book A CUP OF COMFORT FOR NURSES(Adams Media). LIP READER is her second book and her first novel. A member of the Hearing Loss Association of America and the National Association of Memoir Writers, Shanna lives in the Midwest with her family. (from her blog at: http://www.shannagroves.blogspot.com/

Shanna_Lip Reader6You know? I can’t remember when I “met” Shanna Groves. I do know that it was online, and if I know my habits as well as I think I do, it was likely in a hearing loss forum or message board for those with hearing loss. Shanna’s story plucked my heart’s strings, in part because I was 27-years-old and had just had my son when I began losing my hearing as well. I think the biggest reason Shanna’s story resonates with me, is that she is like so many young adults who were born with normal hearing and discover they are slipping into a silent world. Her articles, testimony and writing are superb, and I feel like I can easily identify with her when I read her thoughts.

Shanna has written her first novel, Lip Reader. I read the book in two days. It is not simply because the characters in the story have lively personalities. The way they talk and interact are so “real”, so much like “home” that you find yourself wrapped up in the story of this family in Oklahoma. The way that Shanna writes about hearing loss, makes it abundantly clear that she lives with it herself. Only someone who has experienced it firsthand, could write about the frustrations, humor, loneliness and love of those who live with hearing loss.

I recommend buying a copy for those in your life who may not understand what it means to live with hearing loss day in and day out. Shanna poignantly identifies in her characters what it means to live with hearing loss, or to love someone who does.

What is the book about?

When Rea Traylor flees with her children to see her estranged parents in 1980’s Oklahoma, surprises follow. It is up to Rea’s young daughter, Sapphie, to solve the mystery of her mother’s secret life.

Lip Reader features a colorful cast of characters-an unkempt uncle living in a school bus; a grandfather who preaches in a rundown church; a grandmother born deaf; an aunt fluent in sign language but lacking in social graces; and Sapphie, who finds courage and hope despite mother Rea’s unthinkable act of betrayal.

Lip Reader is now available through Amazon, Barnes and Nobles, or Shanna’s website. I’ve listed the links below. This is a small investment in a BIG book.

Amazon: Click here

Barnes and Noble: Click here

Order through Shanna’s website: Click here

Denise Portis

© 2009 Hearing Loss Journal

Rain, Little Debbies, Saving a Turtle and Home & School Connection

Rain. Sigh... what's a dog to do?
Rain. Sigh... what's a dog to do?

Rain

The farm girl from rural Colorado would never complain about the rain. I don’t mind days like today as it saved me from having to water my flowers, and sweep the deck. I do get a bit whiney when it rains day after day, for I’m usually crawling around the house by Day 3. As it is suppose to be sunny this weekend, I find I’m in a good enough mood to write about the rain in a positive way! I “met” another person with Meniere‘s online through our blogs about 2 weeks ago who fears weather systems as much as I do. It seems very little is “the same” about symptoms of Meniere’s.

What to do with a dog when you can’t go outside and chuck balls for them to chase? Our poor Elkhound, Tyco, really looks forward to his daily scrambles after the ball. He and Chloe have been looking forlornly out at the deck.

Little Debbies

I had to make a quick run to the grocery store this morning to tide us over until my bigger grocery shopping trip on Monday. You know how you need one more trip to get the things you forgot? And I shop with a LIST! How does that happen?

A member of my family is going on a picnic Saturday, so I had written down Little Debbies. My dad worked at the factory in Chatanooga that made the creme that goes in the oatmeal cakes when he was in college! How is that for a random tidbit of Intel? Anywho… I bent down to grab the box, and had a major head rush. Everything went black for a second, so I did what any person with Meniere’s would do… I dropped everything and sat. Chloe sat next to me in the aisle and we both looked at that box. She was wagging her tail, I think in part because she knew I was going to need her help. She is always so eager to help out, it is almost comical! I used the cart to stand, and then pointed to the box and said,

“Chloe… fetch box”. She checked to make sure that I was pointing to the box, and went to retrieve it. Little Debbie boxes are kind of heavy (all that CREME ya know?) and the cardboard is cheap so it gives… it isn’t stiff. It took her a couple of tries, but she finally got it up off the ground and into my hand. Her tail wag indicated she knew she had really accomplished something. When I got home, I tried to take a picture of her retrieving the box, but Tyco got in the way. Oh well… you get the idea…

Chloe retrieves the Little Debbies
Chloe retrieves the Little Debbies

Saving a Turtle

I’ve always called Chris, “Eagle Eyes”, because he has always had a knack for spotting things the rest of us seem to overlook. Last night he went out to the front to bring the trashcan back around back. He saw some birds swooping down on something in the grass. He went to investigate and found this turtle. He was covered in thick mud and hightailed it across the cul-de-sac. Have you ever seen a turtle “high tailing it”? Me either! This one could MOVE. Anyway, we carried it two blocks south of us to the creek and set it free. Thank goodness for Chris’s “Eagle Eyes”, for this guy looked in bad shape as he was so far from water!  DSC02869

Home & School Connection

Kyersten has worked at the Home & School Connection for three years. She looks so cute in her little apron! She doesn’t really like to be called “cute” at 19-years-old though. At least… not by her mother. It’s a very cool store. There is one in Hagerstown as well. If you’ve never been, you’ll have to drop by… and at the very least bug Kyersten! They sell some pretty cool things. I almost bought a praying mantis set. They send you some praying mantis eggs and everything! I decided against it when I saw what they ate. How in the heck do you catch aphids for a praying mantis?

Kyersten looking cute in her apron
Kyersten looking cute in her apron


Denise Portis

© 2009 Hearing Loss Journal

Learning NOT to be Afraid

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React with Calm

Last night Frederick, Maryland, experienced a violent thunderstorm. As I remove my cochlear implant at night to sleep, you might wonder how I came to this knowledge? Well… I’m deaf, but I’m not blind. Our bedroom was lit up with light again and again with what seemed like only seconds between strikes. I reached over and tapped my husband and mumbled out, “Lightning”. I think he said something in response, but in the dark I could only guess that it was something along the lines of “no kidding?”

Chloe, my assistance dog, sleeps in her bed right next to me. She acts as my alarm clock in the morning (although there are days I wish she had a snooze button), so her proximity is key. During the storm, I could see from the light bursting into the room that she was asleep on her bed. Not only was she ASLEEP, but she was laying on her back belly up. This is her “I’m very, very relaxed” position. The storm was so violent, the hair on my arm was standing straight up, and eventually our power was knocked out. Chloe slept through it all.

Many dogs are afraid of thunderstorms. I did not know Chloe when she was a puppy but from what I know of Fidos For Freedom, they make certain their puppy raisers know how to use calming signals to help dogs feel more relaxed in stressful situations. Dogs are many times conditioned to be afraid of thunderstorms. Sure, they have terrific hearing and startle at the sound of thunder. However saying, “poor dear” and babying them when they appear afraid will only condition them to continue to feel fear.

Arachnophobia

I have been afraid of spiders as long as I can remember. I have some “stories” to tell, but it would take several boring posts to relay them all. I can’t leave out the one when I almost jumped out of a moving vehicle 7 months pregnant because a spider was crawling up the windshield! Or the time I walked through a spider web and went screaming into the woods only to careen into a tall oak? Yup… I have plenty of spider stories. A post where I discuss it further can be found here.

I have learned in my 43-years of “living”, that if I try to react in a calm way towards things that frighten me, I will be much better off. About a year ago, I caught sight of a spider flying through the air from the top of our old refrigerator to land in the laundry room sink. I screamed one short squeal, and then stood and pointed. My two teens and husband came running to see what had caused me to scream. All I could do was point to the sink. My husband peered into the sink while I attempted to keep my bladder from emptying. As I still was unable to do anything more than point, he turned on the faucet. A silver-dollar-sized, black hairy spider came crawling up out of the drain.

Holy, 8-legged FREAK, Batman!” yelled my husband who watched a lot of old superhero t.v. shows.

Over time, I have learned to react with CALM so that I will not be so afraid (and eliminate the possibility of injury). I can’t go to Catoctin Wildlife Preserve and enter their “creepy crawlies” building to oooh and ahhh over spiders big enough to suck the brains out of your head. However, I can now look at a spider and scoop him up and toss him outside, or find an old shoe if the pathway to the door seems like a “galaxy far, far away”. I’m proud of the progress I’ve made, and I am far less arachnophobic now compared to where I was.

Why Learn?

Life is short. There are a number of very scary things in life. Where I have the will and the power to do so, I have chosen to be more calm and face my fears.

I don’t fear death. I am secure in where I’ll be one second after my last breath.

I don’t fear deafness and disability. I have found support, help and satisfaction in my life.

I don’t fear growing older. The longer I live, the better I like myself.

I don’t fear financial security. God has seen my family and I through tough times already.

I don’t fear spiders. Unless they are on my person.

I don’t fear thunderstorms. I’m “belly up” in blissful ignorance of a storm overhead.

Don’t let fear shorten your life. It will if you let it.

Denise Portis

© 2009 Hearing Loss Journal