Nucleus Freedom – Page 5

B.L.I.N.G and Invisible Disabilities

Published on July 21, 2009July 21, 2009 by hearingelmo9 Comments

My 19-year-old daughter came up with the witty acronym of B.L.I.N.G. (B asically L iving I nvisible is N ot G ood). It can be tied to a variety of life lessons.

Cochlear implant “bling” and Assistance Dogs

I am a late-deafened adult and I also have Meniere’s disease. Being “late-deafened” is a fancy way of saying that I lost my hearing after I learned oral language. Hearing loss can be mild, moderate, severe or profound. Although all levels of hearing loss affect the way in which a person freely communicates, a person obviously has more serious problems the more severe their hearing loss is. I think part of the reason that HLAA (Hearing Loss Association of America), ALDA (Association of Late-Deafened Adults), and other non-profit organizations for people with hearing loss have trouble attracting new members is that for most people, hearing loss is a nuisance and not a life-changing disability.

According to NCHS (National Center for Health Statistics), there are 37 million Americans who have trouble hearing (NCHS, 2006). A study done by Gallaudet in 2001 reveals that 8 million Americans have difficulty hearing even with the use of a hearing aid (Gallaudet Research Institute, 2007). This leaves approximately 29 million Americans who communicate effectively in spite of a hearing loss. This vast majority of people with hearing loss enjoy the invisibility of their disability as they function well “in spite of”. They “look” like everyone else. They do not have a need for support groups, advocacy or a connection to a non-profit organization because they have no need to identify with the hearing loss group. (I discussed why some people choose to not seek help when they DO have a significant loss here.)

When it became obvious that my own hearing loss was progressive, I began to realize how difficult it is to have an invisible disability. Prior to my cochlear implant in 2005, you would never know I had a disability unless I opened my mouth to speak to you. My speech was beginning to deteriorate just a little bit due to the fact I had not heard my own voice in a number of years. I may have interrupted conversations, not realizing someone else was speaking. I had trouble balancing the volume of my voice and more often spoke to softly than to loudly! Meniere’s disease kindly bestows noticeable symptoms for me when it’s a rainy or overcast day. You would never know it, however, unless I tried to walk a straight line or go up or down steps!

Being surgically implanted with a cochlear implant felt a little bit like a miracle. I could hear my own voice again in most environments and my speech improved dramatically over the period of only a couple of months! Having a cochlear implant does not mean I hear perfectly, however. There are some situations with a lot of background noise or poor acoustical environments that I may have to ask for a “repeat”. I may have trouble following conversations if I’m extremely fatigued. Prior to my implant, I had already adopted bright colored ear molds for my hearing aids and wore my hair up. I found out through a great deal of “trial and error” that it was in my best interests for people to know that I have difficulty hearing. After I received a cochlear implant, I didn’t see the need to change my adopted visibility. I wear “bling” on my CI, and it does draw attention to the fact that I hear but not in a normal way. It allows people to quickly identify that they may need to be sure to face me when they talk, or be aware that if I ask for a repeat it is not because I’m not paying attention. I really believe my “bling” helps other people as much as it helps me.

Having a hearing assistance dog who also does balance related tasks for me, brings attention to my disability as well. If you’ve ever thought about having an assistance dog, but do not like to field questions or have people notice you, then you may want to reconsider. Chloe comes from Fidos For Freedom in Laurel, Maryland. It’s not her bright red vest that gets attention. What makes people notice is simply the fact that she is a DOG! It’s not very often you see a dog in a store, restaurant or even church!

B asically L iving I nvisible is N ot G ood

Recently, God allowed a very mean person to be a part of my life for a short time. I say that GOD allowed this person, because it actually served to remind me that there are bigoted mean people who not only do not understand disabilities, but choose not to understand. Through FaceBook, I ended up “accepting a friend invite” because they were involved with someone I trusted. It didn’t take very long for this person’s true colors to be revealed. Comments left on my uploaded photos or “Notes” and eventually conversations between this person and myself and my husband through “instant messaging”, all revealed how there are still people who don’t “get it”. We received over 45 comments and messages from people astonished that there were still people like this out there! Some people do not realize that disabilities are often invisible. They do not understand that there are good reasons to make an invisible disability… visible! Some people do not understand that disabilities are not chosen. There are some that do not understand that disabilities may not only be life changing, they can be terminal. Many diseases and disabilities are those that shorten a life. God used this person in my life to remind me that some people are not only uneducated about disabilities, but they may willfully choose to believe the worst about those who have them. (It’s a great relief to not have to put up with this person anymore, but I do thank God that it was used to open my eyes!)

For me… basically living invisible is not good. There may be other people with Meniere’s disease or deafness who choose to live another way. I respect that! “Bling” works for me. It reminds even those I know well that in spite of my speaking perfect English (with the exception of a southern accent), I do not hear normally. It reminds them that if I repeat part of what I heard and wait for a repeat of what I didn’t… that it isn’t because I chose to stop paying attention. If I say, “whoa” under my breath and touch the wall in order to snap my visual field back into focus, they are reminded why I have a dog who picks up things for me and “braces”.

“Bling” and an assistance dog both serve to allow me to live with some independence. I don’t have to have family members with me now just to go to the post office or a store.

Invisible Awareness Week

There are others who know what it is like to have an invisible illness or disability. September 14-20 is “Invisible Awareness Week“. If you or someone you know have an invisible illness, I encourage you to check out this site!

If you do not have an invisible disability, chances are you know someone who does. Do you know some of the strongest advocates for people with disabilities are those who do not have one? Think about it… who will get further with a person who misunderstands the needs, reactions, or communications from a person with an invisible illness or disability? Certainly people who live with invisible illnesses or disabilities should learn to advocate in a positive way. Their ability to do so helps us all! However, if you take a person aside and teach them… explain to them a little bit about another person’s disability or illness, it may mean even more! Every person can be a strong advocate for others.

Denise Portis

Falling on STEP 2

Published on June 23, 2009 by hearingelmo4 Comments

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

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

Hearing at the GYN

Published on June 19, 2009August 28, 2009 by hearingelmo2 Comments

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

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

Published on June 15, 2009June 15, 2009 by hearingelmo6 Comments

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

Learning NOT to be Afraid

Published on June 3, 2009June 4, 2009 by hearingelmo2 Comments

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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

What’s Mine is Yours – What’s Yours is Yours (Most of the Time!)

Published on May 28, 2009May 28, 2009 by hearingelmo1 Comment

Sharing some things is not difficult for Chloe

Sharing “Stuff”

Having an assistance dog, means that I should strive to understand the “pack” in which I’ve brought Chloe to live. An assistance dog is not ever suppose to be “pack leader”. That’s my job, and the hierarchy trickles down through various family members until the canine members of the pack are finally represented. I’m not sure an assistance dog should be “head honcho” of the canine crew, but frankly the dogs in our family could never be “leader”.

Tyco, our Elkhound adolescent and family dog, is a major pushover and adores the ground on which Chloe treads. He follows her around with major PUPPY LOVE written all over his face. It practically oozes from ever pore of his wiggle, curly-tailed body. He’d let her eat his food, and sleep in his bed and simply lick her with infatuation while stepping aside to let her do so. I have to keep an “eye on it”, as she would take advantage if I let her!

Gingery’s Baby Pegasus (or Peg for short) is a naked juvenile ex-show dog with a shock of flashy white hair in all the right places. Frankly… I don’t think Chloe is completely certain he even IS a dog. When he barks, all the dogs stop dead in their tracks to turn and observe. Chloe will share her bed with Pegasus; after all, who can say no to a shivering “ain’t got no hair”, pack member?

Ebony is an ancient, black Pomeranian who sleeps 22 hours a day. When she walks I can hear her bones creak, and folks? I’m deaf. She has an enlarged heart, cancer “somewhere”, collapsing trachea, alopecia, kidney disease, and she’s deaf and blind. One drops like a rock if the “little bit” should happen to breathe on you. Chloe doesn’t have any problem sharing with her, for frankly she rarely sees her.

Chloe shares with the other dogs very well, and she shares with one of the three cats like Kiki is her best friend come over for “milk and cookies” and girly talk.

One thing Chloe will not share is the loveseat in the family room, and her walks with me. The latter I don’t mind, for honestly I haven’t a clue how I’d walk yet one more dog as I have enough problems walking with just Chloe on really bad balance days. The “MY LOVESEAT” in the family room gets a little old sometimes. I watch television (thanks to TIVO’d programing) about twice a week. When we go to the family room, Chloe knows I’m there for an hour or two and I give her a major “love on” scratch, massage, and belly rub the entire time we share that seat. It’s a wonder I don’t have carpal tunnel. If any dog even comes close to the loveseat she growls a threat and a row of hair stands up along her spine that has my daughter convinced she’s part Rhodesian Ridgeback. I let her know that growling is simply not allowed. I can’t very well fuss at her for giving a “look” if any dog creeps too close, but by golly they have sure learned to respect that knowing LOOK. As there are plenty of comfy and warm places to curl up all over our family room, I don’t worry to much that anyone is being neglected.

People normally have a fairly good idea what can be shared. It normally begins long before kindergarten, and we learn that sharing is “nice” and it makes mama happy. As we get older, sharing is still one of those ingrained rules but we do draw the line at items regarding hygiene, or perhaps requested Double-Stuffed Oreos when one is responsibile enough to write it on the list. (I added that last part for a 19-year-old daughter that rarely requests anything, and even more rarely writes it on the list to be purchased and then practically HIDES her stash!) People who share are defined as “giving, generous, considerate, charitable, unselfish and magnanimous”. (Actually, that last word has never actually crossed my lips, but it certainly looks appropriate!)

Sharing Feelings

Dogs just do not seem to have any trouble sharing feelings. If their entire body has gone “all a-wag”, you know they are happy. If they avoid eye contact and look away, they are feeling nervous and uneasy. If they stick their hind end in the air they want to play. If they bring you their leash and sit and stare at you until you “notice”, they may be trying to share their joy of exercise. Dogs rarely have trouble opening up, and if you are really good at it, canine body language can really help you get to know your dog. (Thanks to trainer Tracy at Fidos For Freedom, I’m a big fan of Canine Body Language – A Photographic Guide by Brenda Aloff).

People are more difficult to read, and often have trouble sharing feelings. People have to practice being vulnerable and readable. I’ve been reading the daily journal at Caring Bridge from a fellow mom who was recently diagnosed with cancer. She doesn’t have any trouble sharing her feelings, and frankly I’m often compelled to sit and reflect after reading what she views as most important on any given day.

I’ve a friend whom I’ve knitted my heart too for simply experiencing disability and life much as I do. (Small wonder THAT being that I cannot knit, but only crochet). She shares her feelings in two different blogs, and for a moment in time I’m sitting along side her seeing, hearing, tasting, and experiencing everything that she is. She’s THAT good at writing.

If you’ve lived enough of life, you know that it isn’t always safe to share your feelings. Tragic that we live in the kind of world that we do where there are situations that warrants keeping your feelings hidden. All of us know someone who is “toxic” to our lives. They’ve burned us so many times, we have scar tissue. When they are around we don a hazmat suit and deliberately hide who we are to them in hopes they’ll simply leave as quickly as possible. If we were a dog, we’d yawn and look away and pant nervously. Since we are people we smile and “play nice”, collapsing against the door in relief after we’ve seen them off.

Yes, we all have people like this in our lives, but something we should stop and think about is, “Are you this person to another?” May it never be said that someone waits anxiously for me to leave because I’m dangerous to their well being.

Sharing Faith

Why is it so difficult to share something that is so important? My faith is the single most important area of my life. Why? It SAVED my life. I don’t use religion as a crutch, for the truth of the matter is my faith freed me from a lot of negative things. I don’t think being a person of faith makes me a weak person, for people who have REAL faith are normally very strong. (Not that I don’t have my weak moments!)

My son loves “The Rebelution” and has read the book, joined the “cause” and challenges himself to make a difference in the lives of those who are IN HIS. A “funny”, yet true video clip posted there recently really made me think. You can view it here.

I hope that when people spend any time with me at all, it doesn’t take them long to learn the following:

1. I have a disability, and am ok with it. I wouldn’t change it if I could.

2. I love dogs, and welcome the addtion of an assistance dog in my life. She gives me independence.

3. I have a cochlear implant and don’t care who sees it. As a matter of fact seeing it will remind you that I don’t hear like you do.

4. I love my family, and joyfully color my hair to disguise all the gray hair living and loving them have brought.

5. I love others, and may unexpectedly throw my arms around your neck to prove it true.

6. I love my God, and do not mind sharing why my faith is so important to me.

7. It doens’t bother me if you believe differently than I do. I respect others, and have found most people respect my views as well.

8. I like green tea, white cheddar popcorn and blackberries.

(Actually I just threw #8 in to confuse you. If you knew this already, then we are pretty TIGHT).

The best kind of faith sharing is that which simply “happens” because you are living life as you always do. I want my faith to be such a natural “side-effect” of Denise, it just naturally creeps up and gooses you from time to time.

Denise Portis

They Grow Up so Fast

Published on March 18, 2009 by hearingelmo2 Comments

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From Puppy to Adult in 2 years

I didn’t know Chloe when she was a puppy. I’m told that she was the perfect puppy and was the brightest “pup in the class”. GRIN. Those of you who KNEW Chloe then, know that I am being deliberately sarcastic. Chloe was incorrigible, and many a trainer wondered if she’d ever GROW UP. Pat J., at Fidos For Freedom told me that, “we just kept seeing little glimmers of what MIGHT BE“. Trainers from the Puppy Program just shake their heads when they see her today. No one was certain she’d make it. Today, she is a mature working dog who honestly loves what she does. Her tail is in a “constant state of wag”.

She and I were walking this evening and I had my cochlear implant on so that I could walk “more safely”. I was amazed at all the birds I could hear, and I could hear a basketball being bounced in the park. I was thinking how “safe” I felt walking with my cochlear implant, when Chloe stopped dead and whirled to face the direction we had come. I looked quickly to see what was up, and there wasn’t anything that I could see to be excited about! Her hair began to stand on end, and she continued to stare behind us. Right when I thought I was going to say, “let’s go Chloe!”, a big black and white pitbull came racing around the corner headed straight for us.

I stepped closer to Chloe and desperately tried to remember which pocket of my pack had the pepper spray. I don’t “remember” very quickly. The pitbull raced up to Chloe and I could hear her growling softly. A boy who looked to be all of 8 or 9-years-old came running after the dog. The dog’s tail was wagging the whole time, but I kept trying to insert my body between the two of them. It didn’t take the boy long to come up and apologetically collect his dog. I continued on my way, but was actually pretty shaken. Here I was thinkin’ I was all of THAT because I was hearing so well! I really would have never known that a dog was coming if not for Chloe. (Something tells me had I been by myself, however, the attraction would not have been so keen!)

Even when she’s not working and “naked” (a.k.a. without her vest), she is a help to me. I really do feel more confident when she is with me. I do not see the “puppy that was” in her big, brown eyes.

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From Baby to Adult in 18 years

Chris is the baby of the family. It is hard to believe he was born over 18 years ago. He barely weighed 4 pounds when he got out of the hospital. Today he is 6 foot, 3 inches tall and is “all growed up”. He goes to community college this fall (as he gets to go FREE thanks to dad), he works part-time and enjoys serving in our church and community.

A couple of years ago, I didn’t know if Chris would “make it” in the transition to adulthood. He lacked the maturity I thought he needed to really succeed in high school. My husband and I kept seeing “little glimmers of what MIGHT BE”. Today, he is a hard-working young adult with a lot of compassion for his fellow man. His tail is in a constant state of… well you know!

Denise Portis

Passing with FLYING Colors

Published on March 1, 2009March 1, 2009 by hearingelmo7 Comments

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Dolphin Show? Nooooo Problem!

We’ve been to the National Aquarium in Baltimore since my “match” with Chloe, but I choose to sit out during the Dolphin Show. We were “new enough” that I did not know what to expect. This past Saturday we met some new friends at the Aquarium. After soliciting the advice and opinions of fellow Fidos For Freedom folks (geesh… say that 5 times really fast!), I decided to take Chloe to the Dolphin Show. I went a little early so I could pick my own seat. I knew I didn’t want in the “Splash Zone”, but I also did not want to sit as close as where the hearing assistive section was situated. I hear “voices” well enough with my CI, so I decided we’d sit where it was best for CHLOE.

This decision meant in the back and up HIGH – grin! With my poor balance, it took some quickly whispered prayers, Chloe’s steady counter-balance, and a husband walking immediately behind my weaving, dizzy, umm…. BEHIND, for me to get where I felt “safe” for Chloe’s sake.

aquarium-005 Most of the time she stayed down on her blanket, and I was not even forced to reinforce the behavior with her treats. She was OK until she heard the dolphins making sounds. I couldn’t hear it, of course, but my husband said they chattered, chirped and made other interesting noises. Chloe would “pop up” to take a look, but would immediately go back down when I reminded her to do so.

At one point, the crowd burst into applause and exclaimed, “OH!” very loudly. Chloe popped up to take a look, and I found her staring in astonishment! A dolphin was doing the “high jump”, where it burst from the water to touch a ball extended high above the water. If Chloe’s jaw could have dropped open, I’m sure it would have. (I did have to ask her twice after that to go back to a “down”!)

Chloe did great at the Aquarium. aquarium-001 I suppose the biggest “chore” was just keeping her from being stepped on by the crowds, and insuring she was in a “safe place”. I had to put her in “place” a couple of times (opposite of “heel”, to the right). I can’t leave her there very long due to…

… As the World Turns

Meniere’s disease is different in every individual. Although symptoms may be similar, they are never identical. Some people develop Meniere’s along WITH unexplained hearing loss, some people have it without any evidence of hearing loss at all! Some people experience tinnitus (ringing, buzzing, whistling), nausea, dizziness, vertigo, blackouts, blurred vision, and much more.

In a simple, layman’s description: my world spins counter-clockwise. With Chloe in “heel” (although a modified one as she is slightly forward of a formal “heel” due to my inability to see lower, left peripherally), she actually provides a “check” to my slowly, moving world. As my visual field and brain cause me to feel as if I’m spinning left, her “brace” in “heel” sort of SNAPS my visual field back to where it belongs. She is standing, or sitting STILL, which allows my focus to re-establish center as I am NOT “sitting still”. When she is in “place” however, her body isn’t in a position where it enters my counter-clockwise “spin”. Confusing? (grin) Try explaining the individuality of Meniere’s someday!

Let’s just say I’m glad she is in “heel” MOST of the time. I practice “place” and “circle right” as they are occasionally needed.

All So “Normal” for Us

We also went to the shops near the Aquarium, and then waited for about 45 minutes to eat at The Cheesecake Factory. I can hear voices in quiet environments at normal speaking levels. I cannot hear voices in places with a great deal of background noise, nor can I hear whispered things. I tend to miss all of the exclamations from the general public when they see Chloe do something for me.

When she rolls her own blanket up for me so that it is high enough to reach, or picks up her own leash to hand it to me, I do not give it a 2nd thought anymore. She picks up the end of my cane until it’s high enough for me to grab, picks up dropped items like menus or pamphlets, and just has a GRAND time doing it! Although my family are also accustomed to Chloe being by my side and “helping”, they hear those comments that I do not when we are in a new place.

What can be really fun is to see the look on everyone’s face when I remove Chloe’s vest outside for a short break. My dog morphs into “Miss Congeniality”.

Something is ALWAYS Learned

Even when everything does NOT go as smoothly as Saturday did, I still learn important lessons. The least significant lesson may be a reminder of what should be worked on with more diligence. “Reality checks” are great teachers.

Having a working dog does not mean that I do not have to WORK at adapting. My cochlear implant allows me to hear, and yet I am still deaf. I use a bright purple cane, but I still fall sometimes. Chloe acts as my ears, but I will still misunderstand even a noise I am alerted to at times! How we react when everything does NOT go “great” is a good measure of how we are “really” coping with an acquired disability.

Tomorrow I may have a different opinion, but right now I think I’m “passing with FLYING colors!

Denise Portis

“Memories… Light the Corners of my Mind…”

Published on February 13, 2009February 14, 2009 by hearingelmo5 Comments

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Look into these soulful brown eyes, and one can believe she remembers those she loves very easily!

“Memorieeesssss… light the corners of my mmmmind…”

Your age will likely influence whether or not you started singing along, and finished the line, “Misty, water-colored Mmmmemorieeeessss… of the way we were….”

Dogs remember

I’m always amazed at what a dog can remember. Not so much “tricks” and obedience commands, for in truth, they remember those types of skills as the result of an owner/trainer who consistently practices and hones those skills. I “smack my face” in shock at times, as to what a dog can remember that is NOT the result of training. (Yeah, yeah, I know! You’d like to smack my face for me? Grin).

Chloe constantly amazes me at being able to remember a “dog” she hasn’t seen in a really long time, and going all a-wiggle at just a glimpse of her “buddy” across the parking lot. She was “rushed” and received a bite from a white poodle once. She still quivers in fear at the sight of one, and it she isn’t even seeing the SAME one. Chloe has a great memory!

Wednesday, I had to rush to the grocery store to pick up a few items to last my family through the week. I carried one of those baskets, instead of choosing a cart. I’m convinced that I need to remember to ALWAYS reach for a cart now, no matter how few items I may need. The cart actually helps me balance some, and it also allows me to block Chloe from “oh I gotta pet you/cuz I can’t read” hands. (Honestly, you’d think her vest said “PET ME PLEASE!”)

I dropped a coupon and was in the middle of asking Chloe to retrieve it for me, when she heard something and dropped the coupon mid-“retrieve”. Actually it was kind of comical, because when she dropped the coupon her mouth still hung ajar! I’ve never seen my “hound dog” surprised by what she’d heard before! I could tell right away she was hearing something, as she became very still, and her head cocked to the side. Her ears perked up and she looked in the direction of the next aisle.

I was able to get her to focus and retrieve the coupon (with a little EFFORT), and we continued down the aisle. She was literally “a-tremble” with excitement, and kept looking at the aisle next to us with her ears all perked up. I was kicking myself for not having a cart, but bravely rounded the corner and headed into the next aisle. I saw some ladies rounding the corner of the aisle next to us. Fortunately, they were going in the opposite direction so we were now going to have an aisle between us. UNFORTUNATELY, Chloe didn’t like that. She barked a high-pitch yelp/bark. I shushed her immediately, and scolded her quietly as wouldn’t you know the end of the aisle was also nearest the cash registers and front-end employees?

I put her in “heel” and headed down the next aisle. She continued to “hop/walk”, listening intently, and still all “a-tremble“. I tried to listen to make sure that as we rounded the end of the aisle, those ladies were not doing so as well. Being that I’m not a lucky person by chance, I of course came to the end of the aisle at the same time they did! Thankfully, this time I was BETWEEN the ladies and Chloe, but she ducked her head and looked between my knees at the ladies.

One of them noticed her peeking between my kneecaps, and said, “Oh look at the beautiful dog! Look how wonderful she is!” Something about the voice made me start “thinking quickly”, but I couldn’t put it together quite yet “why”.

One of the ladies she was with said, “Oh my! She’s beautiful! What does she do?” She stepped closer to read her vest. The closer she got to me, the clearer her voice became. Chloe was attempting to sit in a nice heel position, but was just trembling from head to toe. The lady said, “Oh she’s crying!”

Darn. I can’t hear Chloe whimper sometimes, so I looked down and said, “Chloe… shussh! Quiet!” I turned to the lady standing there and said, “I’m sorry she’s not normally this way. She seems very excited to see you.”

The ladies moved closer and continued to talk to me (as they realized talking to Chloe was making her no longer SIT). Right as one lady was explaining how thrilled she was that dogs could help a deaf person – it hit me. I was so startled by my epiphany, I dropped my basket… on my foot! (At least it wasn’t Chloe’s!) Thankfully, I only had some boxed items in it so it wasn’t very heavy. The ladies were turning away to go, and I in a bold and desperate move, reached out and motioned to them to stop.

“Excuse me. I love your accent, and I think my dog actually recognizes it from a trainer she had when she was young. Can I ask where you are from?”

Although she had lived here for over a year, she and one of the ladies with her were from Vaspy, Sweden. (I’m sure I’ve spelled that wrong, but I’m spelling it like it sounded and HEY! She had a Swedish accent so I was having trouble!).

They walked away from us to finish shopping and I stood rooted to the spot. I think perhaps my mouth was hung ajar like Chloe’s had been after the coupon retrieve. One of Chloe’s earlier trainers had a Scandinavian accent, although I do not know where she originally “hailed” from. Chloe had HEARD these ladies voices, recognized the ACCENT, and thought Jolanthe was in the next aisle!

Perhaps I shouldn’t have been QUITE that surprised by the turn of events. After all, Chloe can hear Pat’s voice (her most recent trainer) from the next room and become really excited. Heaven help us if we ever happen upon Pat in a store now…

My Ears Want to Remember

My cochlear implant is a wonderful miracle really! I never thought I’d be hearing voices as well as I do “this side of Heaven”. But hearing through the miracle of bionics is not hearing PERFECTLY.

Sometimes I hear things and know “something isn’t right”, but am unable to put my finger on the “what”. Take a cat’s purr for example. If I hold one of our cats right up next to my implant I can “hear” the cat purr. They aren’t very thrilled to be dangling from my hands and smushed up against my implant, but they will continue to purr – believe it or not! I think part of it is that I can feel the vibration of the cat’s purr, and this aids in “conjuring up memories” of a cat’s motor. But when I hear one of our cat’s purr, it’s a little “off”… something isn’t quite “right”. I have a memory of a cat’s purr, but what I’m hearing is just a little bit “mechanical” compared to what I remember. My daughter tells me all our cat’s purr differently. I suppose I’ve had a hearing loss long enough to not really quite understand how a cat’s purr can sound different. Even more remarkable to me, is knowing my daughter claims she can tell the difference! I just can’t quite put my brain around the fact that someone can hear THAT well!

I’m coming up on my four-year anniversary of “hearing again”. I still hear things “for the first time” since activation. For example, this past Christmas I was shopping with my husband at Home Depot. Around the base of one of the Christmas trees, a little miniature train chug-chugged along. I stood there in front of God and shoppers and wept. I could remember the sound of my older brother’s electric train set and “hearing it again”, was emotional!

I’ve spent the past summers “remembering” the sound of lawn mowers, and leaf blowers. I’ve experienced autumns remembering how a rake sounds pulling leaves into a pile. If it’s quiet, and the noise isn’t distorted by other background noises, I hear… and REMEMBER.

Something that makes me sad – if I let it – is not having a memory of how my kids sounded when they were little. We’ve a few old VHS tapes, but hearing the tapes triggers no memories for me as I HAVE NONE. I can usually cheer myself up pretty quickly, in simply recognizing the fact that I have amazing conversations with my young adult children NOW. (Reading their lips, “More juice please” was likely more endearing than “Can I have the car keys” though…)

May all of us take the time to REMEMBER. Don’t waste energy remembering negative things (unless they taught you something). Remember good times, good friends, and heck yeah! GREAT DOGS!

Denise Portis

Camera Shy

Published on February 3, 2009February 3, 2009 by hearingelmo2 Comments

The dogs were having such a great time in the snow this morning, I decided to “dash” inside to get the camera. (At least I did a “dash” for one such as I!) By the time I returned, they were still “throwing snow” at each other so I quickly turned the camera on and began taping.

Yeah. You guessed it, I’m sure. My kids tell me the camera makes a beep when it starts taping. Perhaps that was their “cue” to stop acting so darn cute! Regardless of the “how”, they did put an immediate stop to their antics.

Documented Proof

The dogs were having a great time skidding around in the snow – true. But I’ve also been trying to surreptitiously document how incredibly nutty our puppy is in the snow! He’s an “arctic dog”, and honestly I have to force the little booger inside when the temperature drops below freezing. As it is, when he is tired, he tries to find the biggest patch of snow on which to nap!

I thought I had a perfect “Kodak moment” (or maybe candid camera?) when I sneaked the camera outside. Turn the silly thing “on”, and the dogs slid to a halt. Sigh. We adopted Tyco from my trainer who also does Norwegian Elkhound rescue. I’ve also wanted to tape and document how happy Tyco is with our family, and how perfect a “match” he is for our family. Now Pat will have to take my word for it! Grin.

Invisible Disabilities

This need for “proof”… finding a viable way to show something was true above and beyond the value of my “word”, reminded me of my deafness is some ways.

I get some “flack” for wearing my hair up which allows both my hearing aid and cochlear implant to be visible. I’ve had some culturally Deaf folks give me “heck” for not only choosing a CI, but for wearing “bling” on the device as if I were proud of it – as I am! I’ve had late-deafened people question my sanity for choosing to make something visible that doesn’t need to be. Some try to “blend in” and “look like everyone else”, desperately hoping their hearing loss does not interfere with relationships, a job promotion, or other’s perceptions of their abilities.

I suppose in the beginning I was the same way. I didn’t deliberately TRY to hide my hearing aid, but my hair is long and it did the trick without my trying! However, there came a day when my hearing loss changed from “moderate” to “severe” to “profound”. Speech reading is not an exact science, and my hearing aids were no longer giving me any benefit. I was “missing things”. If people were not aware that I had a hearing loss, they did not know to get my attention prior to communicating with me. I said things at inappropriate times (and still do), or missed what the topic was that was being discussed. I decided to try to make my hearing loss more visible. I did this to help both OTHERS, and myself! I wore my hair up, and wore a magnetic badge that said, “Please Face Me. I read lips!”

After I received my cochlear implant, I decided then and there that I was going to continue to make my invisible disability – visible. I wanted “proof” that I had a hearing loss. I was tired of being misunderstood, or labeled as slow, stuck-up, or mean. My CI allows me to hear voices really well (although I still benefit from a person getting my attention first), but I still miss a lot of things to in crowds and big cavernous locations like malls, restaurants, arenas, gyms, etc. I wanted to SHOW my ears and technology, as a reminder that in many circumstances I am still deaf!

For those who don’t know me, my visible technology lets them know I hear differently. A little patience and good communication skills will insure we communicate just fine. Chloe actually “shouts” the fact that there is something different about me anyway! Everyone notices her FIRST. They “mosey over” to read her vest and THEN look up and check out my ears!

For those who DO know me well, I’ve found my “visibility” reminds them I am still deaf “in spite of” my cochlear implant. We had a fire inspector come and test the alarms at our school a couple of weeks ago. My director planted herself right next to me, as I think she was afraid of what Chloe may do. She didn’t want me “falling down” on her “watch” – smile. When the alarm went off Chloe cocked her head and listened. My director explained that there was a voice as well as the alarm. (Evidently, it explains the emergency and instructs people where to go?) I was talking to Chloe to keep her calm (as she was visibly shaking), and I kept an eye on the blinking lights of the strobe section of the alarms set in the hallway.

Later at lunch, my son found me and asked out of concern, “Gee mom! How did Chloe do during the fire alarm?”

I proudly explained how she remained calm and sat in heel during the entire thing. I told him how the director of our school came to stand next to me to “help if needed”.

Chris contemplated that a moment and then said, “It’s a good thing you wear your hair up so those of us who know you remember you still are deaf! You act so normal now!”

(So pre-implant how does that mean I behaved? Gulp!)

Denise Portis