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Archive for the ‘Tinnitus’ Category

Miracle Workers

In Hearing Loss, Life, Tinnitus on January 16, 2013 at 7:09 pm

In 1979, television aired a remake of “The Miracle Worker.” I sat on the floor as close as I could get to TV watching this deaf and blind girl who wandered around the dinner table eating handfuls of food from her family’s plates like a savage. Ann Sullivan, the miracle worker, showed up and later shoving Helen Keller’s hand under the water spout and spelled water into her palm. Helen’s face lit up as she understood language for the first time in a long time. From there, Helen became an educated young woman, going to college and becoming an advocate for those with disabilities.

At eleven years old, I wanted to understand her world, to find out how someone who couldn’t hear and couldn’t see could be so much a part of life. How did it feel? I put cotton in my ears but still heard too much noise so I plugged my ears with my fingers. That muffled the world a little more but still wasn’t close enough to silence so I gave up trying to figure out deaf the deaf part.

Pretending to be blind came much easier. Closing my eyes when no one else was around, I walked around the house and yard, learning to feel my way around. Walls, doors and stray shoes or toys made for a few scrapes and bruises but I kept at it. I did it over and over until I became good at getting around without seeing. As long as everything was in its place, I could get around in the house in pitch black darkness. Places and things became a snapshot in my mind while my eyes were open (which is an added advantage the blind don’t have) but darkness felt like a friend. This talent exists within me all these years later.

Fate is twisted. Did some childish and romanticized wish escape to become reality? Or was a tiny seed planted to prepare me for what would come? Instead of an oak it became a maple. The irony of it is I “prepared” for the wrong disability. Blindness wasn’t in my future.

Somewhere in my teens, I started losing my hearing but slid by without detection. With hindsight, there were clues but the adults in my life lumped me into the “typical teenager” category, saying “huh?” all the time and not paying attention. I talked too loud and friends asked me to tone it down. I couldn’t understand people speaking from the front seat of vehicles while I sat in the back seat. Kids at school assumed me to be a snob because I walked right by them when they tried talking to me.

Tinnitus, a sign of hearing loss, was my first real challenge at 18 years old. Phantom sounds like crickets and cicadas invaded the whole of my days and nights along with a high pitched squeal. I almost went crazy from lack of sleep so I went to a doctor thinking he would help me get rid of it. Instead, he crushed all hope. “There’s nothing we can do. Learn to live with it,” he said as he got up and left the examining room without offering even he smallest hint of advice on how to do that leaving me stunned.

Live with it? How? With all sense of peace and hope lost, I laid awake at nights for another month watching the pine tree shadows bounce around on the wall as shrill ringing intruded on my sleep. Long, listless days dragged by until one morning I decided I was too young to let this ruin my life. There’s too much to do and see so determination set in. If I had to listen to noise it may as well be something I wanted to hear so I picked up my Walkman, put on my headphones that night and let it play all night long. I had to learn to sleep on my back but it helped me adapt to the cacophony in my head. It’s not easy making a friend of an enemy but eventually I learned.

Unavoidable signs of hearing loss showed up around 21 years old. I replied to conversations all wrong, stopping all conversation with everyone looking at me with strange looks on their face. I started to withdraw and kept to the outskirts of conversations afraid of making a fool of myself.

More symptoms of hearing loss popped up. Fans, air-conditioners, music and traffic started to interfere with my understanding of casual conversation. Phones weren’t loud enough anymore. People had to repeat all the time. One afternoon while talking to my mom long distance on the phone, she got tired of repeating. “For God’s sake, get some hearing aids!” she exclaimed.

Hearing aids at 23 years old? Really? If my mom finally voiced it, how many other people thought it while talking to me? I told my mom I would and I did.

Hearing aids aren’t called “hearing miracles” for a reason. Wearing hearing aids didn’t automatically correct my hearing as glasses do for vision but I didn’t know that at the time. I thought by wearing hearing aids, fixed the problem but people repeated things enough to ask me, “Are your ears on?” They were in and I showed them. I put on my fake smile, focusing my entire will on them as they repeated once again. If I still didn’t understand, I pretended I had. Nodding my head and smiling, (called the deaf nod or bluffing) I said “really” in such a way to match their tone and facial expressions. Most of the time this worked beautifully for them even if I felt lost. I had moments of pause, pondering Helen Keller and wishing I had an Ann Sullivan in my life to navigate the rough territory of hearing loss. I didn’t exactly need sign language, but I needed some sort of help.

I continued to live in the world between, not quite hearing and not deaf. I got by but I lived in a shadow. I don’t know what Helen’s day to day living was like but I bet no one told her to “pay attention” when she didn’t understand or that she had selective hearing. She lived in the absolute silence and darkness. In my no man’s land, I blundered through noise and conversation I heard but couldn’t understand which is a cruel place to live. Many days I wanted to pick up a sharpened pencil jabbing into my ears so I could be deaf. If I couldn’t hear then give me silence! No one understood hearing loss fully least of all me.

Feeling inadequate, I rarely admitted to my hearing loss. It was a weakness, something to hide and share only with those close to me. Ashamed of it, I created a small, safe circle letting in only a few people. This safety net gave me the appearance of being normal but really I cut myself off from most of the world. I wanted to be more secure, more social with more friends but I didn’t know how.

Helen Keller had a companion to show her the way. I had no one. Living in a small desert town, two hours in any direction from a city kept me isolated. There were no ear, nose, throat doctors in town, no audiologists and no support groups. The closest ones were two hours away. I worked as a hairdresser and a few of the older folk came through with hearing aids but they didn’t seem to know anymore than I did. We smiled and nodded to each other as I blew dry their hair. Many times I wished for some sort of guidance.

Without knowing it, my husband at the time became my first advocate. He constantly told people I couldn’t hear. How I hated that at first! He outed me all the time to others. “She didn’t hear a word you said. She is hard of hearing so make sure you face her when talking.” Or while introducing me to others he would add, “If she walks away while you were talking, it’s not because she’s stuck up, it’s because she can’t hear well.” Hearing loss was no longer a secret, which turned out to be for the better. People didn’t turn away in disgust and most of the time they genuinely wanted to help.

More help showed up on the internet which came late to our small town. The first time I sat down to chat online, I felt like I had come home. It provided an equality I hadn’t felt in a long time. All conversations were typed so I didn’t miss a single word. I thrived in the online world becoming more outgoing there than in real life. I sought support groups, tinnitus being the first where I talked to people from all over the world who also had it. I already “habituated” but it felt good to share my story and find out I wasn’t alone.

Next I looked for online support for hearing loss and I found my ‘miracle workers.’ Guidance from many people of all ages came from across the country in the form of the SayWhatClub (SWC), an online support community for those with hearing loss. All of them struggled in the hearing world the same as me. Many lived in small towns, while others lived in bigger cities who shared their knowledge from local support in other organizations which were Association of Late-Deafened Adults (ALDA) and Self Help for the Hard of Hearing (SHHH). Daily, we shared stories of trial and error, laughter and sorrow. We also shared coping strategies and new technology to aid the hard of hearing. My “Ann Sullivan” finally showed up and I don’t know where I’d be today without all their help and support.

More miracle workers came into my world years later when I moved out of my small, desert town into the city. My hearing had declined further so I went online looking for local support. I found out SHHH had changed its name to the Hearing Loss Association of America (HLAA) and my city had an active chapter. More wonderful people came into my life, teaching me even more. I experienced all the technology I only heard about before, such as CART (real time captioning), FM systems, loops and even captioning at the theaters. In this new world, I heard every word for the first time. Hearing loss started out a long, slow, lonely journey but now I have many companions.

Thank goodness for all my local hard of hearing friends and the SWC. A few years after a grueling period of trying to make others I worked with understand hearing loss, I came home to let all my frustration out in a great big crying fit. My boyfriend tried calming me as I gasped and ranted. Even the past flashed through my mind; ridiculous little me playing at being blind when I should have played at deaf instead. In between sobs, I blurted out to my boyfriend, “I didn’t prepare myself to be deaf!” Not knowing the whole story, he answered, “Who does?” I paused in my misery and thought about explaining my child’s play to him. Embarrassed about it all, the fit and the childhood play, I didn’t tell him but his answer made me think. Life throws curve balls. I could make the best of it or the worst of it and these days I had other hard of hearing companions to reach out to.

My hearing loss is progressive, it’s a long, slow and sometimes agonizing journey. To this day I have not stabbed at my ears with a sharpened pencil though at odd times, the thought still occurs to me. Instead, I keep my patience and my companions around. They are my friends who don’t know they are my miracle workers.

A Natural Disaster by Pearl Feder

In Aging and hearing loss, captions, Closed Captioning, Cochlear Implants, Deaf Culture, Deafness, Hard of hearing culture, Hearing aids, Hearing Loss, internet videos, late deafened, Life, Lip Reading, Miscellaneous Ramblings, Relationships, Tinnitus, Uncategorized on December 3, 2012 at 4:50 pm

20121029_081401High Tide Before Hurricane Sandy

  It was October 29th, 8:30 a.m. Monday morning and high tide had flooded the streets of the Rockaways before Sandy made her entrance.  The City had announced a mandatory evacuation the night before and a full moon was expected to break more havoc for people on the east coast when Sandy made her entrance that evening. My husband and I had initially planned to stay put and ride out the storm, afterall, many previous hurricanes had come and gone without a problem. However, this one seemed different.  The air felt busy, the winds were picking up speed too early before the storm and the ocean was not calm as in the saying, all is calm before the storm.  No, this was definitely different.

My left ear was drowning in sounds of waves smashing against a brick wall along with the typical whooshing sounds I’ve inherited over the years.  I wish I had patented those sounds years ago, they definitely feel as if I own them.  My ear was even warning me this storm was going to be bad and so, my husband and I packed up and left and headed for Manhattan to stay with my daughter and her husband.  Midtown Manhattan felt miles away from Sandy.  It never really felt like a Hurricane where we stayed.  The lights went out at midnight but only because the city decided to shut that part of the city down.  We had no T.V., no elevator and no lights.  The only information we gathered was from our emergency, battery operated radio.

Mandatory evacuations, warnings of storms to come, natural disasters, communication of what’s to be expected, what to stay away from, when to stay inside, when to go outside, can be life threatening and play havoc in our lives whether we are deaf, blind or even hearing.  During the storm, everyone around me was glued to the radio.  Getting repeats and rephrases were short and sweet but nothing like listening to the news yourself.  I paced alot and truly missed my internet connection to the world whether on my phone or computer.  I never realized how much I relied on my connectivity until this storm.  I felt so out of touch with everything and everyone.  No matter how much or how little info I received about the storm, I felt I was not receiving the complete story.

After several days, we returned to our community, only to find, despair and destruction all around us.  Many homes in Breezy had burned down during the storm and approximately two blocks of homes burned down near mine.  My home was hit in the basement and first floor.  To make a long story short, I had to live elsewhere and am still living at a friends in the neighborhood.  Many of my neighbors were without homes and are slowly returning.  Many town hall meetings were gathered to disseminate information but no CART was provided.  I refused to go to any meetings where I would sit helplessly at a time when I already felt helpless with all that was going on.

However, there is a certain reality that comes with all of this.  Is it fair to ask for  CART at a time like this?  These meetings are usually held at a moments notice with people in the neighborhood being notified word of mouth.  I’m usually not the one to back off from asking for what I need but it did not strike me as the appropriate time to ask. Afterall, many of the meetings were held to give out important information as soon as possible and with the roads being blocked, no electricity, no internet access and no public transportation, how realistic was it to ask for CART?  In my opinion, it wasn’t.  I relied on my family and friends to pass the information along to me.  Hopefully, most people have this option to ask their family or friends for the information they are not getting.  I also offered my help to the people in charge (First Responders and Doctors) if they needed anything translated to ASL.

So lets look at what we can do to be alerted and prepared.  There’s alot of good information on the internet to prepare ourselves for a disaster, the problem is, actually taking the action to be prepared.  Most people are NOT prepared.  It is so important to have a plan  and be prepared.  I only recently started preparing a small suitcase with necessities.    The absolute necessities are :

-Keep important documents with you: passport, drivers license, extra prescriptions for emergencies.

-Knowing before hand where you plan to go if a mandatory evacuation ocurrs? Communicate with your friends and neighbors where you plan to be.  It’s totally unfair to the police and fire department if you plan to stay home and then need to be rescued.  You are not only putting your own life in jeopardy but you are jeopardizing those who have to now come in and save you and your family.  During Hurricane Sandy, due to the floods, cars floating in the streets, sections of boardwalk floating, police and firepeople could not even get to many houses to assist people in evacuating.   Several deaths due to people trying to rescue prized possessions from their basements, only to get trapped in the rising water that filled basements in less than a minute.

-Cellphone and charger.  Computer and charger

-Making sure you always have enough medication to take with you, if needed.

-Water.  Enough water for three days.  Canned foods and a can opener. Snack bars.

-Subscribing to websites that notify you of emergencies in your area through email and text messaging.  I am notified of emergencies through my national weather service as well as through my “NotifyNYC” accounts.  They notify me of weather emergencies in my area as well as real time notification of accidents, police activity, Amber alerts, and anything considered to affect you when you are out and about.  However, another system recently put in place is called the Wireless Emergency Alert System also known as WEA.  You will need to contact your cellphone carrier to see if your cellphone is WEA compatible http://www.ctia.org/consumer_info/safety/index.cfm/AID/12082  There is no charge for this service.

-Paper, notebook and pens

-Flashlights, extra batteries for your flashlights and extra batteries for your hearing aids and/or cochlear implant devices.  I had recently stocked up on lantern type flashlights which could light up a room.  I actually like these better than flashlights.  If you have enough hearing for an emergency radio, they are worth investing in.  They can easily be picked up at a Radio Shack or online at Amazon.com.  However, I strongly recommend all items be purchased when there are no emergencies taking place as the stores tend to run out of these items very quickly.

-2 gallon or 5 gallon gas cans.  Never in a million years did I ever think I would witness a gas shortage but a gas shortage is what we had.  I can only tell you that had I had several containers to hold gas, I could have easily obtain the gas I needed.  I spent days not being able to go to work or leave the peninsula due to conserving gas in my car for emergencies.   During the peak of the gas shortage, 5 gallon cans were selling for over $200.   Amazon.com  has  reasonable prices: http://www.amazon.com/s/ref=nb_sb_noss_1/189-8702441-4636440?url=search-alias%3Daps&field-keywords=gas+cans  For those who don’t want to go by way of gas cans and don’t want to it in lines, if you search Craigs List as I did, you are bound to find people willing to bring you gas, right to your car.  You read correctly.  I managed to find a young man willing to travel the tristate area and bring you gas for twice the amount you would pay for it at the station.  I guess I can’t help but wonder how he got access to the gas?

The most important thing to remember is to be patient, make your needs known and be prepared. The level of stress during a natural disaster is high. Keeping a sense of humor always helps and being aware that you are not alone is very important.  Trying to be rational during a very traumatic time is difficult but it will take you alot further than joining the ranks of being irrational and hysterical. Surviving a natural disaster relies heavily on your mental state, your physical well being and your being prepared. Do it now, don’t put it off, BE PREPARED.  I never thought I needed to be prepared.

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Hurricane Sandy 2012

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