“Family”

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8″.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

“I See Him as a Friend”

Hearing Elmo welcomes guest writers! (I figure you get tired of only hearing my point of view!) Today I welcome a distant cousin, Ted. Ted and I “met” on Facebook, connecting with family and friends in a way only Facebook seems able to do. It is great fun to talk to him because we grew up in the same small town, “middle of nowhere”, farming community. Ted works with a non-profit called “Aids – Out of Africa” (http://www.facebook.com/pages/AIDS-Out-of-Africa/109654919088134) and is also active in his community, helping to dispel myths about people with disabilities. How? By being their friend…

Hope to hear more from Ted in the future!

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When my cousin was asking for stories for the web site about disabilities I was a little confused.   But I walk around in a state of confusion anyway so it didn’t bother me.  I did however start thinking.  Disability is all around us every day.  Sure we recognize the Disabled Vet in the wheelchair or the blind with the service animal, but we miss many of the other truly disabled.  Disability comes to many in all forms.

Having been associated with the Veterans Hospital for the past 30 some years, I have become accustom seeing “Disabilities” and don’t stop to stare or wonder the why’s or what’s of this concentrated elite group of America’s often forgotten service men and women.  Some are missing arms or legs, some are blinded, some in wheelchairs.  But many have hidden  “Problems” that we don’t see.  They are legally blind but do not require a service animal or the typically white cane.  Some are deaf but with the miracles of new hearing devices are able to communicate without being obvious.  When I walk into the audiology clinic, the receptionist, Peggy, greets every patient looking directly at them, speaking clearly, just a touch of volume, and a little slower.  Suddenly I realize that she cares.  That means a lot.  And when scheduled for the optometry clinic the doctor personally called my home to reschedule an appointment because she was being transferred and wanted to personally follow up on a surgery.  I take that kind of service very serious.  I appreciate those who care to go that little extra distance.

Now for the purpose of this writing and the  personal note.  Charlie is a friend, I call him a friend because he always takes the time to come over and speak to my wife and I every Monday at the weekly auction we seem to always attend.  He jokes with us and tells us what has happened during the past week.  If Mary is not with me, he will ask about her and the same if I am not in attendance.  He pats me on the back and makes me happy.  I see him on occasion at different locations all over town.   He is the kind of friend that never complains about his personal problems.  If his personal transportation broke down, I would help him replace or repair as necessary.  However he has a disability that many shy away from.   Charlie is limited mentally.  His appearance also makes many uncomfortable.  His teeth were not taken care of but that is in a stage of repair now.  Most people see him as a nuisance or embarrassment.  I see him as a friend.  I have asked myself what is there about Charlie that makes me proud to be his friend?  It is because his “Disability” only exist in the minds of the “Normal” people around him.  Charlie is seen all over town because although he is not allowed to drive, rides his bike pulling a trailer, around to selected locations to do odd jobs.  He is at the auction because he helps load items for buyers for whatever “Tip” they might give him.  During the night he sometimes shows me how much money he has taken in from his work that night.  In his mind he is not “Disabled”.  He is however truly challenged.   He lives alone, and pays his rent.  He wears clean clothes, and is showered and shaved.  I cannot compare him to all the people that thinks the world owes them a living because he makes his own lemonade out of the lemons that nature has dealt him.

So as we walk past people at Wal-Mart, or set beside them on a bus, we don’t really understand the limits of their “Disabilities”….. Perhaps better yet we do not understand their unlimited  “Abilities”.  Maybe the person just needs a friend.  I don’t think the word “Disabilities” is a true description.  I think that the word Challenged is better.  But neither fits my friend Charlie for in his mind he is not challenged nor disabled,  he is making a living the only way he knows how.  If he receives a little help along the way, that’s great.  But he would rather be accepted as is, where is.  So when you are asked to repeat a statement because the person could not hear or more likely not understand you, don’t get angry or say, “Forget it” for they can’t forget.  Try to be more like Peggy, louder, slower and facing them.    If the vision impaired need a little assistance, offer to help.  Just a, “Need some help with that?”, can make a person’s day.   It might even make your day.  An older person might be struggling to reach an item off the shelve.  When you hand it to them, there is a moment where you feel like you have really done something great and you have.

Ted C. Burhenn.

Sex and Hearing Loss

When preparing to write this post, I went back and forth about providing “hard and fast” FACTS about gender differences in hearing loss and writing about personal observations. Because I can easily provide links to documents, research and scholarly articles about the topic, I decided to write about personal observations. Before I do that, let me provide those links!

A wonderful article about gender and race differences can be accessed HERE.

How hormones can have a part in the way hearing loss manifests in individuals can be read about HERE.

An article about why men are more likely to experience hearing loss can be accessed HERE.

An article by ASHA and Cochlear Americas can be accessed HERE.

Personal Observations

I realize that personal observations are somewhat limited by the experiences of the individual themselves. However, as I have had the opportunity to be a part of a number of hearing loss organizations, and have had the privilege of speaking to groups of my peers and professionals across the United States, I have a lot of faith in my own personal observations about gender differences. Sometimes new information was gleaned as the result of attending workshops, conferences and meetings; listening to experts on hearing loss discuss gender differences was very informative. However, I also happen to be a terrific “listener” in spite of my own profound hearing loss. Corresponding with people from across the United States that I may have met in my travels, or are frequently visiting “Hearing Elmo”, I have drawn some conclusions about how hearing loss affects the different sexes. Please allow me to share my observations with you!

Men with Hearing Loss

1. Men are more apt to be pushed into getting help. Perhaps men stay in a stage of denial longer than women do, but men are usually encouraged to do something about their hearing loss as opposed to taking the initiative to doing it themselves. I don’t think it is because they are unable to make decisions about their hearing health; rather, men are more likely to “fake” their way through life pretending they don’t really have a hearing problem. This does not mean that women do not “fake it”, nor does it mean that women are not ever pestered to visit an audiologist. I just believe that men are more likely to be badgered into going to a hearing health professional than women are.

2. Men do not usually seek support from peers until hearing loss has reached a critical point. I believe that men are more likely to “go on about their life” and “making do” after getting that first hearing aid than women are. If assistive technology allows a man to continue working, interacting, and living life, they will be unlikely to join support groups or advocacy groups compared to women with hearing loss. If hearing loss is progressive, men will also begin to seek out information, support, and peers once hearing loss interferes with communication and relationships. On the positive side, men with a stable, mild to moderate level of hearing loss are more likely to not let hearing loss define who they are. Hearing aids and assistive devices are merely tools. I think men may equate support groups with “talking about your feelings”, and as a result miss opportunities such as learning more about advances in technology, discovering legislation that may have an effect on hearing loss populations, and learning valuable communication strategies.

3. At the severe to profound level, men are more likely to shut people out. I can’t tell you the number of times men have told me that they alienated everyone that cared about them when their hearing loss really began to affect their lives. Perhaps it is a coping mechanism? One man wrote to me and shared, “I filed for divorce from my wife of 11 years. I felt in a panic to do it before she filed for divorce from me because I wasn’t the man she married”. One man came up to me after a workshop and said, “It’s easier to be be cranky and belligerent than to discuss with my family how my hearing loss makes me feel”. Still another shared, “I’d rather be accused of being distant than to talk about my hearing loss with her”.

4. Men are less likely to use hearing assistance dogs. Of all the people I know who chose to be partnered with a hearing assistance dog… most are women. Yes – there are some men… but my experience is that they are the minority. I believe if you are partnered with a hearing assistance dog, you have shouldered the responsibility of knowing that by doing so you will be making a potentially invisible disability very visible. Perhaps men are less likely to place their safety and trust in a canine partner? That doesn’t mean they are less likely to like dogs. (On the contrary, I am asked by more men to pet Chloe or field questions about what she does for me). The budding psychology student in me believes that men are more likely to strive to be independent of help from any avenue compared to women. What I find ironic, is that my own hearing assistance dog actually PROVIDES independence to me rather than a new dependent relationship. I think men and women simply view this very visible “assistance” in different ways.

Men in the Supportive Role

I believe men are supportive of those they care about that may have hearing loss. Many husbands attend HLAA, ALDA or AGBell meetings, conferences and conventions in support of someone they care about. However, I have heard women make complaints such as:

“He gets so frustrated that I’m still so SAD about my hearing loss!”

“He is supportive of MY problem, but does not acknowledge it is OUR problem.”

“He doesn’t mind making phone calls for me, but I can tell it frustrates him sometimes”

Women usually welcome a “helping hand” with something as intensely personal as hearing loss. They normally welcome a shared role in learning to live with the acquired disability.

Women with Hearing Loss

1. Women are more likely to “grieve” hearing loss. I think both males and females go through stages of grief when they experience hearing loss. However, I think women tend to get bogged down in depression and experiencing feelings of grief than men do. Perhaps it is because women are usually living more with their “feeler” than men do? I just know that I have heard countless testimonies of women who experienced real grief about their hearing loss. Maybe women are more likely to admit they feel sad about their hearing loss in comparison to men.

2. Women seem to need peer support groups even early in hearing loss. Not all hearing loss is progressive. However, I have been a part of a number of hearing loss support groups and traveled to visit groups across the country. Many hearing loss support groups have women who attend that have a moderate to severe hearing loss. Most of the time, the men I meet who attend these groups have a more significant loss. I think women rely on communication more than men do as a part of what holds their relationships together. When women see a threat to their relationships, they are spurred to action to seek out assistance from their peers. Women tend to flood the workshops on communication tips and will be the attendees who are taking copious notes.

3. Women tend to care about how their hearing loss affects others more than men do. Yikes. I may get “grief” for this one. Fellas? Before you send a barrage of emails to my INBOX, please note that I am not saying men do not care about how hearing loss affects the “others” in their lives. It has been my experience that women seem to be more concerned about how their hearing loss affects others… to a fault. Women can actually become bogged down in worrying about how their hearing loss is changing the lives of those around them. They may worry more about being a burden and how others “feel about them now”. A positive reaction, however, is that women are more likely to actively discover how the “others” in their lives are doing, and in the process adopt or modify communication strategies.

Women in the Supportive Role

I think communication is so important to women, that they may become NAGS to the men in their lives who have hearing loss. It is important to learn “HOW” to encourage the male in your life to seek help. Women may resort to desperate and negative measures if they see that communication has been influenced by hearing loss.

Men may attend support groups with their significant other with hearing loss as an ongoing part of their “protective/provider” role. When the male is the one with hearing loss, however, women should understand that the men in their lives may not necessarily welcome a partnership view of hearing loss. Men (especially at first) may prefer attending support groups alone so that they may continue in what they view as being independent in their role. Women should carefully choose how to discuss that support groups provide them with important information and tools as well as peer support from others who love someone with hearing loss.

As always, I welcome your input and own experiences as they relate to sex and hearing loss!

Now… for all those that saw the title of this post and thought I was going to write about something much different? You have an assignment:

Denise Portis

© 2010 Personal Hearing Loss Journal

Not-So-Fun Life Lessons on Vacation

A little morphine will put a smile on the face of most anyone!

Kyersten is a frequent guest writer at Hearing Elmo. She is a KODA and has participated in HLAA, Walk4Hearing, and Fidos For Freedom activities most of her life. She is a junior in college and is majoring in Psychology.

Okay, I’m really, really stubborn

Being someone who hates doctors and hospitals, I pretended nothing was wrong for almost a week. After all, if you pretend it isn’t there, it doesn’t exist right? Besides, you’re not supposed to get sick on vacation, that’s no fun.

But pretty soon I knew that I had, I decided, the stomach flu. So I went to the urgent care in my grandparent’s town. Or rather, one of them, because being a city of retired folk, they have about a million urgent cares.

After running a urine test and blood test (blech), the doctor discovered my white blood cell count was dangerously high. SOME stomach flu. They decided to give me an IV. Or, at least they suggested it…at first.

“No thanks, I don’t want an IV,” I smiled.

“Well, we need to give these medications, and it’s best through the IV,” explained a nurse.

“No, I’ll just take a pill,” I replied, smiling but firm.

“No, we’re going to have to put an IV in there,” said the nurse, smiling but firm.

“No I really don’t want it, just give me some pills, I’ll go pick them up at the pharmacy,” I said, slightly more desperate. The nurse pursed his lips. He was cute and a fireman…but married with twins, so a total loss there. He was just the enemy who wanted to stick the needle in me.

“Okay, well, you have to go get my grandma first. NOW.” I said. (All of my 20-year-old independence was out the window when it came to a needle!) I needed grandma, and I needed her NOW.

Thankfully my practical grandma calmed me somewhat and they were able to give me an IV, into which they slid medications and fluids into my body. Ooooo morphine. The world looked more amusing and less painful. But the morphine didn’t keep me from panicking somewhat when they decided to send me for a CT scan at a local imaging place. SOME stomach flu this was!

Deciding that perhaps I was wrong about the whole stomach flu thing…

After drinking 2 large bottles of nasty poisoned Gatorade (they claimed it was because of the dye mixed into the Gatorade), I was led to a back room.

The technician looked about my age. I was slightly suspicious how much experience he had. He led me to a room to change into some unflattering and itchy clothing. After waiting for a bit, I was led to the Machine.

“Now, this machine is going to take pictures of your insides,” he explained. I wondered how old he thought I was….I was getting a lot of “you look 16” comments recently.

“Oooh, can I put them on Facebook?” I asked, trying to lighten the mood.

“I supposed you can request a CD of the electronic versions of the pictures,” he replied seriously. Okay-y-y. (No sense of humor!)

The CT scan was boring and the technician bossy.

“Breathe in…hold your breath. Breathe out. Breathe in. Hold your breath. Breathe out”. Over…and over….and over….and over. I wondered if this really was taking pictures of my insides or was trying to calm me down from the harrowing IV experience (which, if I may say, was still in my arm. I was pretending it wasn’t there though).

I was sent to the waiting room. They called the fireman nurse and doctor. Pretty soon they called me up front. The fireman nurse was on the phone.

“You’re going to have to go to the hospital immediately. I was able to get a bed for you,” he said. He explained the process of getting there.

I nodded obediently as if he could see me, my rebellion rather withered. I assumed at this point it probably wasn’t stomach flu.

“Okay, I’m going to go get some stuff first,” I said politely.

“No…you need to go NOW,” Well okay then.

Well, this is all very…new…and…well, uncomfortable

So I went. I called my parents, who I had been keeping updated. I texted my brother to tell him I loved him. And I mentally prepared myself for surgery.

And then I waited.

And waited.

And waited.

They decided they needed to do more tests.

The first test they decided to do they quickly concluded they could not do because I am a virgin. They were very peeved. I almost apologized even.

“I’m really sorry I’m not like so many other young people nowadays and haven’t lost my virginity several times over by now!” On second thought, no, I was proud of the fact I was a virgin.

So instead they did an ultrasound. Wait just a minute, didn’t they just establish I was a virgin? So why exactly are they doing an ultrasound? But no, there are apparently other reasons to do an ultrasound. Grandma was completely fascinated. I was just uncomfortable.

Late that night Mom and Chloe arrived, both were tired but very happy to see me. My grandparents went home and I was knocked out by some sleep medication while Mom kept watch by my bedside in the hospital.

I was comforted by her presence and she said I kept reaching out towards her in the night, to reassure myself she was there. You’ll always need your mom.

Tests, tests, and more tests…and I never even got a grade

Kyersten needed a "Chloe hug" once the morphine kicked in...

The next day was filled with more tests, including an MRI. The MRI was probably the highlight of my hospital stay… if there could be a highlight. The MRI technician looked like a mad scientist and he was absolutely hilarious. The MRI itself was kind of cozy, and he actually had to wake me up once. I felt rested after the scans.

After all the tests, including so many blood tests that I lost count, it was time for them to consider what to do, because they were really not sure what was wrong with me. They did another blood test to once again confirm that I wasn’t pregnant (as though the two ultrasounds, the urine test, the blood tests, and oh yeah…the fact I am a VIRGIN, wasn’t enough to confirm!)

Wednesday was the day. I wasn’t scared of the surgery, I was in too much agonizing pain to care. I had never before felt such pain and I hope I never do again. A terrible migraine hit me on top of my stomach pains. Then, my IV decided to try to burst my veins; thankfully, the skilled nurses got it out in time. Unfortunately they had trouble finding a new vein and dug around in my left hand for awhile before moving to my right arm.

A story of being in a whole buncha pain…oh and experiencing being “high”

That time was the worst part of the hospital stay, all I could do was lie on the bed and sob, feeling like a complete baby and wanting so so so badly to be home. My amazing Grandma and Mom were there, answering tears in their eyes. At one point Mom left to talk to a nurse and my Grandma prayed for me…which I needed to hear because all I could pray was “please God please please, please God”.

The nurse, in desperation, gave me a new medication which made me very….well….high.

“I think my words are messed up,” I gasped. I stumbled, shaking as if I was having a seizure to the bathroom and back to the bed.

“I can’t talk, my words are gone,” I moaned in confusion. Mom and Grandma were whispering, used to trying to keep quiet because of the migraine.

“Please don’t whisper….your lips smack together more,” I complained. My poor long-suffering family!

They finally wheeled me down to be prepped for surgery and I did feel a bit nervous. The pain, however,  was over-riding everything else again. The weird pain medicine had worn off. A nurse’s humming drove me insane, as did the loud talking of the nurses around. I really wanted to be in a quiet hole somewhere. Mom asked the nurses to quiet down (bless her wonderful, protective heart), and most of them did, except the loud humming one.

She gave me papers to sign. I apologized for my clumsiness, saying I was not left-handed (the IV and various wires were on my right arm). She snapped at me to use the other arm then. I meekly admitted I needed to use the bathroom.

She ripped the different cords off me (I had spent some moments trying to see if I could change my heart rate, before the headache returned…it was fun!) and took me to the bathroom, hooking my IV on the door, and leaving me. I was terrified someone would open the door and pull the IV out, so I hurried. Barely able to even lower myself to toilet by myself, I half-crawled to the door and yelled for help. I was definitely learning humility! Another, kinder, nurse came and helped me.

Going under the knife…and having little cameras looking inside my body….weird

Then it was a blur, I was wheeled to the room, and after prepping me a little more, I waited for the countdown.

And woke up in recovery.

“I have to pee,” I cried. I was assured I didn’t need to. I sat there whimpering for a few minutes about not being able to see (my eyesight was blurry) before I gained control of myself and calmed down. I felt kind of silly when I realized how much I had been crying. Now I was just confused. I squinted around me. I had no idea what happened in the surgery. The hospital doctor came by and seemed truly pleased to see me. He explained that my appendix had ruptured, they removed it, and cleaned up the infection. Ewwww. Eventually I was wheeled up to my room, I was happy to see my nurses and family, in a very drugged-out foggy way.

The time where I felt like Frankenstein

After another couple of days of recovery, which all seemed like a blur, a surgeon came in to look at my wounds. I watched them uncovered the bandages.

“Oh it looks so good!” he said. I almost screamed…or passed out, I was still deciding which to do before he left. Nine terrible looking staples were stuck in my stomach. I decided I was having a nightmare.

“What is that?”, I whimpered. My mom comforted me and explained the fact I had staples, not stitches. I felt absolutely horrified. I decided to pretend they weren’t there. (I was getting good at denial. It can be psychologically healthy sometimes).

The drug-induced blurred ending of the story…they put me on a lot of medications

The next few days consisted of different milestones. Leaving the hospital… sleeping a lot at my grandparent’s home… going to the airport… setting off the metal detector with my staples… flying home… being pushed through the airport by a speed demon wheelchair “pusher”… and finally arriving home alive. (All of course in a drug-induced stupor).

What I Learned…oh the joy of life lessons

Yes, it wasn’t the best vacation but my pain and suffering eventually stopped. There was a fix. It eventually slowed and I became stronger and felt better each day. In spite of the trauma of events, it was just a “blip” in my life.

I was forced to think about my friends and family who do NOT have a “fix” for their physical problems. I thought of how the doctors at first were skeptical that something was terribly wrong. During the exploratory surgery, I finally had proof something was wrong. (Even though my appendix wasn’t where it was suppose to be… I knew I was special).

I have friends with Lyme disease who do not have “proof” of their illness and are treated with skepticism. I can now understand … in a small way… what they go through and not having a doctor listen to you. It made me appreciate those emotional trials they go through in addition to their physical ones.

I thought about my friends and family with disabilities and illnesses that have no cure. At the times I was tempted to feel sorry for myself (and yeah! I may have given in and had a pity party or two), I thought of the fact that there was a light at the end of the tunnel for ME. It made me appreciate the bravery of those who live each day with no “light at the end of the tunnel”. They still live life to the fullest. I know they have times of weakness and maybe a pity party or two. But they live each day with the strength and bravery that I can never imagine having myself. Pain and helplessness (doing simple tasks like using the restroom), makes common life tasks more challenging. I never fully appreciated what those with chronic illness and disabilities go through each and every day. It helped me go through my small trial of physical pain and helplessness…I thought of these people and felt motivated to keep at it, to be strong. I am awed by their strength. From this experience… I now have new heroes. Those who overcome physical challenges every day.

Kyersten Diane Portis

20-year-old Guest Writer to Hearing Elmo

© 2010 Personal Hearing Loss Journal

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/

You 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

Nightmare Trip

Trip home:  Chloe kept making sure Mom was ok…

Kyersten Portis often writes for Hearing Elmo. She has only known “Mom” (Denise) as a late-deafened adult. Hearing loss affects the entire family unit, and my disability has made it possible that all members of my family are incredibly “ABLE”.

The scene was already something from a horror movie. It was late at night on HWY 501, and we didn’t know where we were going.  The road was out in the middle of nowhere. The mountains loomed around us and the road showed little sign of life apart from a few abandoned looking buildings. Off in the darkness one could see the dark emptiness of a valley. The road was winding, narrow, and the top speed limit was 20 mph in most places.  Your mind could conjure up pictures of Ax Murderers wandering along the road to murder and terrify… and umm – AX people.

We didn’t run into any Ax Murderers. Still, it was quite a scary trip.

We were traveling to visit a college I’m interested in transferring too in Virginia. It was up in the mountains. As the road became increasingly curvy, Mom became increasingly car sick.

“Why are we here? I have a balance disorder! I feel sick! I hate you, Terry,” she moaned from the backseat where she sat with Chloe. Dad at first defended himself, but then meekly apologized as she continued to pipe up at rather random moments that she “hated him”. (He said later she said the same thing when she was giving birth to me, so he figured she was just in pain and didn’t mean it).

Poor Mom. I offered to switch seats with her as I was in the front, but she refused. She finally started crying. After a couple of minutes, her crying stopped. I was relieved and glad she was feeling braver. I glanced into the backseat…

“Oh my gosh! She passed out!” I gasped. Dad flinched but kept driving. What could we do? We couldn’t stop, no civilization was in sight. (Besides, the Ax Murderers are out there!) Mom came back to consciousness finally.

She moaned, and asked if we were there yet (to which we lied and said, “almost”).  She asked Dad to turn out the headlights. When he said he couldn’t, she told him she hated him, and asked for me to help her find her cochlear implant (which was actually attached to her head) and passed out again. This time she hit the window. I yelped for Dad to pull over. I crawled to the back to where she was at poked her gently. Chloe came up to bark at shadows (perhaps Ax Murderers) and it seemed to bring Mom back to consciousness.  She asked why Chloe was barking and then basically repeated what she had said the first time she passed out. So… I sat in the back and held Mom up as she passed out another few times. I tell you what… there is nothing quite as scary as seeing your mom pass in and out of consciousness. I held my hand up to feel her breathing in and out, worried about how still she was.

We finally made it to our hotel. And Mom? Mom didn’t recall any of the events and felt bad about telling her husband she hated him a 100 times.

I was definitely thanking God she was okay and amused more than anything. She felt dizzy the rest of the night. I listened worriedly at the bathroom door when she took a shower, waiting for a “thunk” if she passed out. But she seemed to sleep it off and felt better the next day and was good on the way home.(We took a different route, and it was DAYLIGHT!)

Actually, the whole car trip could be seen as “life with someone with a disability“. As life became twisted and dark, Mom felt isolated from the world. But even in her isolation, her family was there. She was isolated from civilization, but we were there in the space (aka, car) with her. She may not have wanted to accept our help, but we were there for her. We held her up, encouraged her, and traveled to the end of the road with her. With God’s help, we brought her out of the depression and darkness and into contentment. Dad didn’t let her push him away, even when she said she hated him. He tried to fix it and carry her to safety. Chloe, didn’t know was going on honestly, but barked at the shadows that crept upon Mom. She stood over her in the dark, worried and trying to help. Many times Chloe helps chase away any gloom that Mom feels just because of her unconditional doggie love. I helped support her, and Chris prayed from home after getting a hysterical text from ME. Mom endured. And we arrived at the end of the road, to peace. We knew there would be other trips and roads, but we enjoyed the oasis of peace and look forward with the knowledge we’ll be okay. God is always there with us. And we always have each other =)

Kyersten Portis

(10 days shy of 19-years-old)   

Denise Portis

©2009 Hearing Loss Journal

A Disability May Keep You From WANTING to Come… but I NEED YOU TO COME!

Kyersten (18-years-old) is a contributor to Hearing Elmo. She has only known her mother as a person with hearing loss. Recognizing, supporting, and loving a parent with hearing loss and balance problems, does not mean that sometimes it is acknowledged that the disability GETS IN THE WAY.

On October 25^th, 2008, my Dad, Mom, and I woke up at “4 something” in the morning. The horror! The earli-ness! With bleary eyes and a lot of yawns, we stumbled to the car in order to drive about three hours to visit Waynesburg University.  Waynesburg is the first on my list of colleges to visit. I am currently trying to decide where to transfer, and my parents are supporting me in my quest for the Perfect Fit.

The trip was uneventful, but rainy and foggy. We were rather glad to finally arrive.

We arrived a bit later than we had hoped, so Dad dropped mom and I off and went to park. Mom and I stood patiently (okay… impatiently) urging Chloe to “hurry up” (go to the bathroom). It was very wet and she was stubborn, so we went inside.  We were greeted by a very sweet “student ambassador” and I was given a packet of information.

Mom and I then went to “hurry up” ourselves.  Next, we walked into the main room, with Dad, who had arrived rather “wet”. A lady gestured us toward some seats and we sat down, only to stand up ten minutes later (having missed most of the introduction remarks).

Mom went outside to encourage Chloe to “hurry up”, as she still had not yet gone. She went ahead of us, so Dad and I lost track of where she was. I told Dad to go look for her, and continued on with the group. I felt a little awkward being the only student in the tour group without parents, but, I told myself I was learning to be independent.

Dad texted me and soon found me with the group. He was by himself. Mom had stayed in the van with Chloe.

So, Dad and I continued on the tour. I got a text from my mom. Her texts always make me smile; they are full of the shortened words associated with someone wanting to get a message to someone in as little time as possible, “Do not worry about me. chloe and me r hangn at van. tell dad 2 stay with u. am dizzy nyway!” I didn’t know until later that she had cried for a good twenty minutes as she texted that.

Dad and I continued the tour, which was very interesting. I really loved the small, yet beautiful, friendly college. Despite the rain, you could see the beauty of the architecture of the buildings, as well as the small-town charm of the city surrounding it.

After the tour, my Dad and I walked quickly back to the van to fetch Mom. She was surprised to see us and a little hesitant, but she “dressed” Chloe in her vest and accompanied us as the rain had stopped. We went to find the classroom where our meeting with a psychology professor was being held.  (My chosen major is psychology). The building was at the bottom of a flight of stairs. Mom wasn’t sure she could make it, and hesitated. A helpful woman saw us and showed us to another floor, from where we took the elevator down to the floor where our meeting was located. After that meeting, we made our way to the bookstore.

Mom and I had a small argument about colleges on our way to the bookstore. Frustrated, I went to search for a sweatshirt. Mom came into the store.

“Hey, want to help me find a good color?” I asked.

“I’m really dizzy, I am going to stand here,” she answered. I clenched my teeth and continued shopping. I felt selfish for being aggravated at mom for not coming to help me.

We then made our way to the cafeteria, everyone’s tempers now on edge. A woman stopped us as we tried to go into the cafeteria.

“Is that a seeing eye dog?” she asked suspiciously.

Mom looked surprised and offended, “I am not blind,” she said quickly. She then launched into her speech about what Chloe did and the law that allows Chloe to accompany Mom anywhere. Mom then offered to give the lady literature. The woman refused, saying she”just hadn’t seen something like Chloe before”.

We went to find a table. Dad went to go get his and mom’s food as it was a buffet-type of cafeteria.  Handling an assistance dog at a buffet is NOT easy business!

“Do you think I should give the lady literature about assistance dogs on our way out?” Mom asked.

“No, she said she didn’t want it,” I answered.

Mom and I are A LOT alike in many areas, but when it comes to conflict, we handle it differently. Admittedly, mine is probably a worse way to handle it. I withdraw and avoid conflict. Mom isn’t scared of it, and wanted to make sure the woman didn’t bother other assistance teams in the future.

She said as much.

“I just shouldn’t have come; I’m obviously not doing any good. I wish to God y’all had left me in the car,” Mom said.

I started crying.

Now ANYONE who knows me knows that… a) I am not a crier  b) I dislike crying, and c) I never, EVER cry in public.

The meal went downhill from there. I refused to eat, so Mom refused to eat. Dad had a concerned look on his face, but it didn’t stop him from eating his plate of food and Mom’s. Such a man.

I went to the car to get away from everything, Mom following behind, Dad finishing the meal and then coming after us.

We worked it out. That’s what a family does after all; you HAVE to live with each other, so HAVE to resolve issues.

Mom was upset because she felt like I was purposefully disagreeing with everything she said.

I was upset because I felt like she didn’t want to be involved anymore.

I know my mom has a disability, two actually, if you count her balance. I know that there are some things she can’t do. Dad and I mentioned a couple of times on the tour that it was good she didn’t come. With the slippery sidewalks, lots of stairs, and a tour guide he and I couldn’t even hear sometimes, she would not have enjoyed it. However, I want her to be as involved in my hunt for the Perfect Fit as much as she can. She’s my mom.

She and I are a lot alike. And she knows me better than anyone. Dad’s advice I greatly appreciate and value. However, he has more of a Type A, competitive personality, whereas I have a quieter personality. His idea of the Perfect Fit would probably not be the same as mine.

To me, this is one of the last things in my life that I will need my parent’s involvement. It’s a huge step into the world of adulthood and responsibility.

I don’t want Mom to let her disability keep her from being my Mom. I realize she may not be able to do everything or may have to have special accommodations to be able to do some things. But the extra work to allow her to come along is worth it, because she is my mom. I need her… just the way she is.

Kyersten Portis

—————-

Denise Portis

© 2008 Hearing Loss Journal

A Night in the Life of Our Family

Kyersten is a guest writer on Hearing Elmo and does a fantastic job (in THIS mom’s opinion) of relating what it is like being a CODA (child of deaf adult) or as she prefers it: KODA (Kid of deaf adult).  I think it’s important that readers “hear” the OTHER opinions and thoughts about how deafness affects a family.  Sometimes those thoughts are sad.  Sometimes those thoughts are angry.  And sometimes?  Sometimes it’s just really funny…

It was very impressive.

We watched as mom sailed over the gate. She flew gracefully in the air and landed rather ungracefully on the ground.

It’s not the fall that hurts, it’s the landing.

There was silence.

This is what she looked like:

Chloe, half asleep, sat up on the couch and peered down at Mom. This is what Chloe looked like:

(… well what she’d look like if she were a cat)

Mom said “ow”.

Chris stifled a laugh, quickly changing his face to the look of a concerned son.

I expressed casual worry, “You okay, Mom?”

Dad asked what happened, unfortunately having missed the dramatic gliding over the gate.

While worried about her, we were starting to get used to her lying on the floor, embarrassed and dazed.

Dad went to help her up. They looked for serious injuries. He helped her back to the couch.

And so we resumed our evening.

Kyersten is eighteen years old and lives with her dad, late-deafened mom, and 6’3″ “baby” brother in Maryland.  To leave out mention of the menagerie of animals living there as well would be… wise – as she wanted this short.

Denise Portis

© 2008 Hearing Loss Journal

Does Hearing Loss Change or Affect Your Personality?

Dr. Terry Portis a counseling psychologist with 20 years of experience as an educator, education and non-profit executive, speaker and writer. His interests include history, leadership, technology, disabilities, family and faith. His wife Denise has a profound hearing loss and has a cochlear implant. They have two teenage children and have lived in Maryland for six years. They moved to Maryland from North Carolina, and Terry is still a huge UNC basketball fan, even when they are having a bad year (which almost never happens). He is a co-writes for Hearing Elmo, but has his own blog as well.

Terry with our ancient Pom, Ebony at Harpers Ferry 10/19/08

Does Hearing Loss Affect or Change Your Personality?

There are many ways to describe personality and to use the study of personality to help us understand people’s tendencies when faced with opportunities and challenges. Each person is a unique individual, and we must be cautious not to put people into neat little boxes. However, understanding how people tend to operate in comfort zones will help us understand ourselves and the people around us. In fact, personality assessment and skills assessment are the two primary ways businesses and organizations are organizing work teams and project leaders. So, personality theory is again on the cutting edge of management and human resources.

One of the most basic and easy to understand models of personality identifies 4 major personality types. Almost everyone has a “primary” personality type, but most people are a “blend.” If a person has questions about their own personality type, a short survey of family and friends usually provides the needed information.

The Choleric personality is an extrovert, “the doer”, and optimistic. They feel like they must correct wrongs and injustices, and also have a compulsive need for change. Their strengths include: goal oriented, sees the whole picture, organizes well (in a big picture sense, not details), thrives on opposition, excels in emergencies, and focuses on productivity. Their potential problem areas: can be compulsive workers who can’t relax, has an inner need to be in control, may run over people to get the job done, frequently pressures other people who are not moving at a “full-steam ahead” pace, and sometimes look down on others who are not choleric or who have different leadership styles.

When hearing loss occurs, the Choleric will “attack” the problem and will go to get help right away. However, once fitted with a hearing aid or cochlear implant, they may never interact with other hard of hearing people again. To them, the challenge has been addressed, and the various tasks of this “project” have been completed. Those who DO get involved with hearing loss issues, usually become major advocates and leaders. Hearing loss does not usually affect the choleric unless it negatively affects their job. This will damage their ego and self-esteem, and they may retreat and give up. For most Cholerics, their “job” and vocation is WHO they are. If hearing loss affects their ability to do their job, they can be extremely traumatized.

The Phlegmatic personality is an introvert, “the watcher”, and pessimistic. They want peace at any price. They love stability, and people have trouble finding something bad to say about them. Why? They hate conflict and rarely “cross swords” with anyone else! Their strengths are: competent and steady, peaceable and agreeable, mediates problems, avoids conflicts, good under pressure, and finds the easy way. Their potential problem areas: can be resistant to change, may have a problem with procrastination, do not like to communicate their feelings, often have difficulty making decisions, and may appear lazy or unmotivated.

When a Phlegmatic has a hearing loss, they may “bluff” for some time. “I don’t have a hearing loss”, they may say. When the hearing loss gets to where they cannot “bluff” any longer, then well-meaning family members or friends can finally talk them into going to get help. They may attend meetings and advocacy groups, but usually because family members with a different personality type want them too! To avoid conflict, they get involved in these groups to keep the peace. They will eventually be involved in many “behind the scenes” activities. They will more quickly recognize another phlegmatic with hearing difficulties. A phlegmatic without support during their hearing loss crisis, may be the most prone to isolate themselves. They may quit their jobs, church, social groups and LIFE.

The Sanguine personality is an extrovert, “the talker”, and optimistic. Their relationships are more important than any of the other personalities. Even at work, their co-workers are more important than the work itself. They are usually curious and expressive. Their strengths include: ready to volunteer, love to think up new activities, look great on the surface, creative and colorful, energetic and enthusiastic, can inspire others to join in, and they can be very charming. The potential problem areas: can talk too much, are sometimes good at starting things, but weak in finishing them, avoid negative situations even if they should work through it, can barge ahead without counting the costs, and are quick to give simplistic answers to every question.

When hearing loss occurs in a Sanguine personality, they will usually get help right away because they cannot communicate well with people. Communication and relationship are everything to them! They many times will be involved with hearing loss issues and groups because they love to interact. They can be negatively affected by hearing loss if it seems to hurt their relationships… divorce or loss of a partner who cannot accept the hearing loss, or children and/or parents who give negative feedback about their new communication “issues”. This can devastate a Sanguine and send them into depression, which rarely happens to this personality type.

The Melancholic personality is an introvert, “the thinker”, and pessimistic. They are content to stay in the background, love orderliness and organization, and are analytical. Their strengths are: detail conscious, schedule oriented, persistent and thorough, economical, likes charts, graphs and lists. Their potential problem areas are: can spend too much time planning, expect perfection from themselves and others, often have low self-esteem, can be gloomy, and may be prone to look for trouble.

When a Melancholic experiences hearing loss they are the most likely to be depressed and extremely emotional about it. If friends and family members can “rally” them out of their “blues”, they will usually seek help and then become very compassionate advocates for hearing loss issues. They also enjoy behind the scenes work and are great “listeners” to someone new to hearing loss.

Hearing loss does affect all personalities differently. Although equally traumatic, different personalities may adjust more quickly and readily to coping mechanisms and technology. Personalities do not change, but strengths that may not have been utilized before hearing loss may manifest themselves. Also, weaknesses that may not have been as apparent and more in control before hearing loss, may become real problem areas for the person after hearing loss. It was also noted that adjustments can be made, but then additional hearing loss might occur. Some personality types might simply adjust AGAIN, while others may have a much tougher time “rallying”.

Dr. Terry D. Portis

© 2008 Hearing Loss Journal

Are you too sensitive?

For curiosities sake, I went to my favorite hearing loss forums and discussion boards and counted the number of topics that had to do with “hurt feelings” and being “too sensitive”.  I knew the subject had come up in one form or another on every site I’ve been too, yet I was surprised to finally give up counting after 75 “finds”!

Just like people with “normal” hearing, people with hearing loss can be too sensitive.  This subject has been discussed a great deal in my household lately, and you’ll note my daughter recently posted on this topic.  What does being “sensitive” even mean?

According to one source, (as it pertains to feelings and people), it can mean:

Of a person, easily offended, upset or hurt.

This is different that being sensitive to the burdens, worries, and problems of others.  That type of sensitivity stems from an empathy that leads you to step in and make a difference.  (Something ALL of us should learn to do better!) When you have this kind of sensitivity, you are in high demand as a friend.  Your sensitivity is towards OTHERS, not self.

But people with hearing loss can be too sensitive to the comments made by others, or even facial expression and body language.  I know this because I AM a person with hearing loss, and I can BE this way sometimes!  In the beginning especially, I found it very hard not to react in a really defensive way towards others.  Through observing the examples of those who modeled genuine acceptance for who they are, I too, have learned to appreciate the good and bad of hearing loss.

How can you know if you are highly sensitive?

Psychologist Kyra Mesich asks the following questions:

Do you feel emotions often and deeply?

Are you keenly aware of other people’s feelings?

Are you easily hurt or upset by insults or unkind remarks?

Do you avoids conflicts and confrontations?

Can you not easily release sad or upset feelings?

Do you feel deeply for others’ suffering and pain?

Are you prone to recurrent depression?

Are you keenly aware of and affected by beauty (art, music, nature)?

Do you feel overwhelmed or depleted by too much stimuli (large crowds, loud noises, hectic environments)?

Were you sensitive as a child?

If you answer “yes” to some or many of these questions, chances are you are very sensitive.  You’ll note that some of things things are POSITIVE!  Some of these are considered to be a strength and add to your character.  Some types of sensitivity create problems, however.  This negative type of sensitivity can alienate the people who love you, and hurt your character.

I believe that many times an acquired disability creates new feelings of sensitivity that perhaps were not there before. Some people feel like their entire world has changed, and nothing is as it was! They become “hyper” sensitive as they re-learn how to interact with their world now that one of their major senses is missing.

What are some things that can help you become less sensitive? (When I say this I do not mean that we should become “hardened” towards the needs of others!  I mean that we become less defensive, and overreact “less”!)

I’d love to hear from some of you!  Feel free to email me your own ideas, or post a comment of some tips of your own! (Check/click “comments” as needed as some will likely post their own ideas in this section instead of emailing.  Emailed comments will be cut/pasted at the end in RED. )  Some things I have thought of…

1.  Learn to give the benefit of the doubt.

This is not easy to adopt, yet we really can change our way of thinking and learn to give the benefit of the doubt to others.  We should start with those close to us, and trust their hearts that they meant no harm in what they said.  Don’t try to tell me that you can’t ignore what your heart and “feeler” is experiencing!  Take it from someone who use to wear their feelings on their sleeves!  You really CAN change the way you think!  Deliberately choose to “believe the best”, time after time.  Eventually it will become a habit, and you will find that you assume the best in a natural way.  At first, however, you may have to consciously CHOOSE to think in a positive manner.  (Phil. 4:8)

2.  If unsure, immediately ask for clarification.

Especially in the beginning, you may need to do a lot of this!  After all, you are trying to break a bad habit of over-reacting to people’s comments or expression! If you are left puzzling (or “smarting”) over something someone said, hold up your hand and ask!  Something as simple as… “Whoa!  Wait a minute!  You ARE teasing, aren’t you?”  Don’t sit around stewing about it if you aren’t sure!

3.  Learn to notice the “silliness” too… and notice it FIRST!

What a revelation it was to me to learn that the tension in a situation could be easily diffused by being the first to notice how silly it was!  If I mishear something, I have learned to stop and parrot what I thought I heard.  Sometimes it is hysterical! I believe this helps others in two very important ways.

1) Others learn HOW you sometimes hear something.  It may cause them to choose their words more carefully in the future.

2) They learn that you are a “safe” person.  You can see the “funny” in life and look at things in a positive light.  If you are comfortable with your disability, chance are they will be too.

4.  Recognize that being “sensitive” is not a positive trait.

I’m always amazed when people brag like it’s a GOOD thing to be a really sensitive person!  Certainly if we are sensitive to the needs of others, we can really be used to make a difference!  But if your sensitivity is in how you respond to others, then it has become all about “SELF”.  We become so intent on how WE feel or were made to feel, we totally miss looking to others.  By realizing what a negative trait it is to be highly sensitive, we can better change a behavior we have developed or inherited.  If you don’t first see how this is hurting who you are and what you can be, it is unlikely you will be stimulated to change!  “Own” that you have a problem and need to change.

5.  Determine if the real issue is SELF-esteem.

It was very liberating for me to realize that one of the reasons I over-reacted to everything was my own poor self-esteem.  A phrase often used to describe me was that she “makes mountains out of mole-hills!”  (I still have my mole-moments!  Smile!)  It may be that you need to work on YOU, before you can get past being overly sensitive to others.  Find some good books or devotionals on self-esteem.  One CAN improve their self-esteem.  If we have a poor opinion of ourselves now that we are deaf, chances are we think everyone else feels the same way.

In the end, what helped me the most was that I wanted to be surprised when someone WAS deliberately trying to hurt me.  I had been living as though people meant something in a mean way, and was surprised to discover they did not.  I desperately wanted to change that around.  I wanted to live and respond in such a way that it was normal for people to mean well.  The only surprise I wanted to experience was when someone WAS intentionally trying to hurt me.  I’ve found that I’m rarely surprised.

Denise Portis

© Hearing Loss Journal

(From LB) I was once told “We only tease those we love”. After I became super sensitive about things, people quit teasing me. I looked around and noticed that there were very few people who loved me enough to trust me with good-natured teasing. That told me a lot. I vowed to change my ways!

(From TTU) Your quote about being a “safe” person reminded me of a great book entitled: “Safe People: How to Find Relationships That Are Good for You and Avoid Those That Aren’t” by Drs. Cloud and Townsend. People who are overly sensitive are not “safe”. I didn’t want to become one of those people after my hearing loss!

(From Vicki) I know that I am sensitive. I am learning in ways how to deal with it. This does not always have anything to do with my hearing loss. Some people tease me in a friendly way and at first I did not take it that way until one person pulled me aside and said that others were just trying to lighten the mood around me as I can be too serious at times. When I started commenting in a friendly teasing way back to them, they were pleased that I was coming around and included me in more things. I am now learning to listen to how the comments are said and who is saying it. This can make a difference into who is stating it. I am also learning to take things one day at a time. I am also learning to be more positive in the way I handle things as the more I do this, the more people has been responsive and truly trying to help me out. This is a step by step process and I was fortunate enough to have a friend who took the time to work with me. I still have a long ways to go.

Thanks for sharing this with us Denise and enlightening us with such a wonderful way of opening us up to how we need to learn to face all this.