The Longest Blog I've Ever Done

I recently joined an online support group for the Deaf and Hard of Hearing. Lately, I've been feeling down about my HOH problems and I wanted to surround myself with people understand my troubles. One of the members shared the following article written by someone that is able to express exactly what I go through.

I know it's long, and it doesn't fit into my usual anti-TLDR stance, but it's a good read and it will help you (the 3 readers of my blog) to understand me better.


Family Gathering Tips for Hard of Hearing
by Beth J. Wilson

Introduction
The image that many people have of the family gathering is one of laughter and cheer as family members get together with people they know and love to share each other's company. The reality for many people with hearing loss is that these events are frustrating. When communication is a struggle, the hard of hearing family member can be left feeling isolated in a room full of people.

In this article we will examine this phenomenon, identifying the problem that exists for hard of hearing people and the reasons that communication is so difficult. Then, armed with a better understanding of where the breakdowns exist, we can talk about some strategies to make the family gathering a more pleasant experience for everyone.

The Problem
Hard of hearing people often feel isolated in a crowd of people. The first few times the conversation becomes mysterious, we will ask for something to be repeated. As time wears on, though, we become frustrated that we are missing so much and "they" become irritated at having to repeat so many things. This is when the "us" vs. "them" barriers are raised and the problem really begins.

For the hard of hearing person, the blood pressure begins to rise the first time the question "what did you say?" is answered with "oh, it was nothing important." Tempers really flare when the hearing family member asks in frustration, "Are you wearing your hearing aid?" Eventually the once-uttered questions such as, "what did you say," "what are we talking about," and "what was so funny" become silent questions that melt into a state of despair. The only thought that then emerges is, "I wonder what is going on."

This happens all the time for hard of hearing people. Why is it more isolating at a family gathering? One reason is that this is an environment where we should be able to feel relaxed. Resentment builds as we see all our relatives enjoying themselves and having a good time and we have to work so hard to hear so little. Family settings are also a little more forgiving. Usually if we behave badly or let our frustrations show, the family will forgive us. We can't express our frustration as easily in the workplace, for example. When we try out our assertiveness techniques in a "safe" environment and still have troubles, it is even more frustrating.

Bad Coping Techniques
There are plenty of bad coping models we have learned to use. One technique I refer to as the "Bully Method." This is where we insist that whatever was said once for the hearing audience must be repeated for us. We become bitter because we have to be so assertive. We certainly are not able to have a good time because we have to be so aggressive. And don't forget the hearing
people in the exchange. This technique cannot be pleasant for them either. The message is that we are missing the fun and it is their fault that we are missing it or their responsibility to fill in the gaps.

Another technique is the "Me Method." Simply stated, if we are talking then we are not required to listen. Many hard of hearing people don't even realize that they employ this technique. If you monopolize the conversation and do all the talking, then you have some fun for a change. If you happen to be entertaining (we all believe we are…) then the others in the room will also have some fun. The reality sets in when later we find out some news about a family member that we missed because we didn't give anyone the opportunity to share anything with us.

The last technique is the most common and I refer to this as the "I'm Gone Method." This is where we drop out of the event either physically or emotionally. When everyone laughs at a punch line that we missed, we pretend to have heard it and laugh right along. Most of us are pretty effective at the "deaf nod" technique where we pretend the conversation we have tuned out is completely fascinating. Eventually we will leave the room and some of us won't even show up in the first place.

Why Is It So Hard?
Just as people who have no problems walking hardly notice a set of stairs, hearing people do not immediately recognize those elements of an environment that make us miserable. Hearing people are able to focus on multiple conversations. Hard of hearing people cannot focus on more than one conversation and in most cases lose the primary conversation if there are competing voices. Hearing people enjoy music in the background and can ignore a TV program they are not watching. Hard of hearing people cannot block out such noises and cannot understand speech with a stereo or television on. Hearing people understand each other even with their backs turned or from another room. Hard of hearing people need "line-of-sight" communication without obstacles (beards and mustaches) or obstructions (napkins, papers, hands). Hearing people can carry on a conversation with the lights dimmed. For hard of hearing people "mood lighting" is the source of a bad mood.

The solution requires work by everyone. As hard of hearing people, we cannot expect our hearing family members to know what is a problem for us unless we tell them. For many hearing people the first step is recognizing that there is a problem and the remaining steps are trying to discover a better way. With some exceptions that have nothing to do with hearing loss, our family members do not want to exclude us. They just don't know how to include us.

This disconnect is what makes frustrations mount for everyone involved. We feel isolated because we are missing all the conversations. We feel sad because we see how irritated others are becoming at repeating things for us. We feel exhausted because the listening is hard work for us all the time.

It is not easy for our hearing family members, either. They feel guilty when they look over at us and realize that we are missing everything. They feel sad when they realize that we are not enjoying ourselves.

Eventually no one is happy. We become angry because the hearing people stop repeating things. Our hearing family members become angry because they have to say everything twice. Let's face it; the story is never as funny the second time it is told. When we don't find it as amusing as the hearing people did at their showing, we feel cheated. The real insult comes when we hear the common retort, "I told you it wasn't worth repeating."

Understanding Speech Perception
Those of us with a hearing loss know that we struggle to understand speech, but often we don't know why. The answer is in the way that our brains interpret speech sounds. There are many sounds that enter our ears, and spoken words are unique in their structure. Hearing people receive more information and their brains are able to sort through the confusion better. Hard of hearing people receive ambiguous information and it is much more work for our brains to sort out the mess.

Think of speech as a musical chord with 4 notes. The lowest note is produced when the speaker's vocal chord vibrates. This note is lower for men and higher for children. The next note depends on the way the speaker constricts their throat to make the word. The next higher note is determined by what the speaker does inside their mouth (hidden behind their teeth). For example, "n" and "t" have similar 3rd notes. The highest note is formed by the way the sound is stopped (if at all). Vowels are not stopped and have a lower frequency note in the chord. The "s" and "f" chords are identical except that the teeth stop the "s" (resulting in a higher frequency note) and the lips stop the "f".

When someone mumbles they stomp on that highest note in the chord. Even a hearing person will have trouble with a person that mumbles because suddenly a lot of words sound the same. Our brains know that there are supposed to be 4 notes in the chord, so will try to make sense of what information is available. It is kind of like a very fast game from Wheel of Fortune. The
auditory processing sees a phrase with some blanks for letters. Our brains have learned that the "s" and "f" are similar, so if the first 3 notes match the right way, these 2 letters will be on a list to pick from.

Background Noise Makes it Worse
The missing notes from our speech chord are a struggle, but this is made much worse with background noise. Background noise gives the brain too much information. Especially when there are a lot of people talking or music in the room, these frequencies come in with the speech and make it so that many choices are available for all of the blanks.

Some noises are worse than others. A fan or water running is often called "white noise." This means that all of the frequencies in the speech range are being shoved into your ear. The brain doesn't know which frequencies to ignore and which frequencies to put together in a speech chord. A hearing aid amplifies the background noise with the speech and gives the brain a mess to sort through. A nearby conversation is hard, too, because now you are hearing words from different people.

The other part of the problem is that most of us with a hearing loss have a range of frequencies that we hear somewhat with our hearing aids, but not as good as other frequencies. Noise in this range masks the speech and gives us more blanks to work with in our Wheel of Fortune game. Now not only do we have too many choices for all the blanks - we have more blanks to fill!

If we work hard, we might be able to fill in the blanks in one phrase before the next one comes in. Eventually, though, we will get too tired and we won't be finished with one phrase before the next sets of blanks arrive. This is when our brain says, "Forget it, I can't keep up." It seems like all of the sudden we can't understand anything. I know if I keep struggling it will give me a headache.

When Lipreading Helps
Lipreading is one of the most misunderstood skills for hard of hearing people. We depend on lipreading so much, but it can get us in a lot of trouble if we depend on it as the only source of speech information. Unlike the actors in Hollywood, we cannot understand people by just lipreading them.

Unfortunately many people believe that we are able to understand complex conversations by lipreading as if this were a skill we were given automatically to compensate for our hearing loss. The reality is that lipreading is a difficult skill that few are able to master. Another myth is
that lipreading can be an accommodation. When we ask for the television volume to be turned down so that we can participate in a conversation in the same room, our relatives may suggest that we lipread and let them watch the game or movie. The reality is that lipreading is only successful when the speaker never moves, all the words are known, the words are predictable, and the words are visible. That beard or mustache that our relatives find so charming is a real nuisance for us.

The real problem is that lipreading is not reliable. Returning to the musical chord analogy, the highest note is determined by the way the speaker stops the air ("s" with the teeth or "f" with the lips) if it is stopped (vowels are not stopped but are shaped in this note). The three lower notes are invisible. An "excellent" lipreader can only see one of the four notes. In a noisy environment we are guessing at 75% of the conversation. No wonder lipreading feels so hard.

Lipreading does help, though. If you heard the lower 3 notes and could "see" the highest note, you could figure out the chord. Many of us hear lower sounds better than higher sounds, so lipreading gives us the high frequency information we cannot hear. The lesson here is that lipreading is the most effective tool for us only in a quiet setting.

Unusable Volume
There is a well-documented but often misunderstood phenomenon for hard of hearing people where much of the volume range is not useable. The hearing aid industry understands this as a concept where very little of the amplification scale is helpful to us.

The best way to explain this effect is by a hypothetical example. Let's say I was to walk into a room where a hearing person is watching television and they have the volume set on "5." When I sit down and try to watch the program I am struggling and finally will ask, "can you turn that up, please?

I can't understand anything that is going on." The person will have to turn it up to "8" before I can understand the program clearly, but it is probably uncomfortable for them. When the program finishes, I leave the room announcing that I'm going to read the newspaper in the next room. The hearing person turns the volume back to "5" with some sense of relief. A few minutes later I come back into the room and say, "can you turn that down, please? I can't concentrate with that TV blaring." The hearing person looks at me with confusion as they must turn the volume down to "3" before I am satisfied.

As a hard of hearing person, I have to have the volume unbearably loud to be able to understand speech, but I also have to have it unreasonably soft to be able to block it out. On the hypothetical volume control, the range from "4" to "7" is useless to me.

The reason that it is important for us to understand this effect and be able to explain it is that when we ask for the TV or stereo to be turned down it needs to be almost off to be of benefit to us. When we don't understand the concept of unusable volume, we may believe that the hearing person doesn't believe it is difficult for us because they hardly turned the stereo down at all when we asked. When our hearing family members don't understand unusable volume, they think they are helping and become frustrated when we demand more. They may even think our request to turn the TV off is unreasonable since we need it so loud to understand it, the volume in the background can't possibly be disturbing us.

Ideas and Strategies
If anything you have just read is new to you, you can imagine what a revelation it would be to a hearing person. The first coping tip is to be open about our hearing loss. Explain the limitations and offer suggestions. Phrases like "my hearing aid amplifies noise just as much as speech" can go a long way in explaining why we are struggling. Explaining that unusable volume is common among hard of hearing people makes our mysterious dislike of normal volume levels comprehendible. Also, when we talk offer information about our hearing loss we make it acceptable to talk about, ask questions about, and discover solutions for. For some reason people sometimes act as if we don't know we have a hearing loss. It is almost as if there is some social code that prohibits the mention of hearing aids or our hearing loss in case we might suddenly discover it. If we bring it up, then it becomes an acceptable subject and the barriers start to fall.

The second step is to make your needs known. If the television or radio is playing in the room where you are trying to understand a conversation, ask to turn it down or off. If the lights are dimmed for some ceremony or effect, ask that there be a time when the effect is complete and you can be allowed to join the conversation again. The key here is in how you go about this. If you explode with contempt when the lights are dimmed exclaiming, "now I can't hear anything, you must turn the lights back on," the poor person at the controls will feel either guilty that they didn't somehow know it was a problem for you or angry that you seem so negative. A better way
would be something like, "these candles are really nice and what a nice way to start the dinner - if you don't mind I need to bring the lights up a little, though, so that I can rejoin the conversation."

Another coping tip is to be more realistic about what you are able to do. If you will develop a headache trying to follow all the conversation at the dinner table, try to recognize what is within your range. You will enjoy yourself more if you can follow the conversation of the person next to you and across from you and ignore the events at the other end of the table. Identify your sphere of capability and work within that.

The fourth idea is related to this. Sometimes you need to be more selective about where you will participate in the family function. If the television is too loud in the living room, then ask the person you are talking with if you can move into the kitchen where it is easier to talk. Walk around and find a quieter place that is easier for you to understand conversation and talk to whoever is there. If you establish your comfortable space, maybe people will come to you.

The fifth tip is to take time out if you need it. Listening is an active event for us while it is a passive experience for hearing people. Understanding speech is more work for us and sometimes we need a break. There is nothing wrong with excusing yourself for a short walk or a drive or
some time in a quiet place where you don't have to listen. Be honest about what you are doing. If you just disappear your relatives may think you are angry or brooding. Remarking as you put your coat on, "I need to give my lipreading eyeballs a break, I think I'll take a little walk" will put your action in a cheerful framework of coping instead of a tense example of not coping well.

Summary
The important thing is to not try to hide your hearing loss. Explain why it is difficult for you to hear when there is noise in the background. Dispel the lipreading myths and describe your problems with unusable volume. Make the process a partnership between you and the people you want to communicate with. It may be your hearing loss but when you are unable to participate it is a loss for those around you as well. Real solutions in this kind of environment require a partnership where everyone works together to make the communication possible.

You have the best understanding of your hearing loss, so you are in a good position to offer strategies to help you participate. Be firm about your communication needs, but assertiveness does not necessarily mean aggressiveness. The more positive your attitude, the more responsive those around you are to learning about your needs.

Head Scarves & Accomplishments

I'm envious of Muslim women. The don't have to fix their hair everyday. Can you imagine having that kind of freedom? Freedom, bah!

We are almost finished with the upstairs bathroom renovation! Woot! I am beyond excited. We're trying to come up with a project name for our next job. We're considering:

1. What's Beneath the Carpet?
2.Why Would Anyone EVER Put Carpet in a Bathroom?
3. The Thought of Starting Work on the Other Bathroom Makes Me Physically Ill.
4. If I Have to Bust Open Another Paint Can, I'm Gonna Punch Someone in the Mouth.
5. Does Wallpaper Cover Holes in the Ceiling?
6. Will the Cracked Toilet Bowl Hold Out Until We Can Get the House Sold?

Oh, the choices!

2nd Anniversary of the Best Date Ever

On Sunday, David and I will celebrate the two year anniversary of our first date. At that point I had been single for 4 years, and I had gone on countless first dates, but they rarely went beyond that. I really didn't expect this one to amount to anything either. I'm so glad I was wrong.

I arrived at our meeting point and was scanning the room for him. Immediately, the front door opened, and in he walked. If you know me, you know that I have an insane attraction to teeth. David grinned at me and I swooned. He has the BEST gap in between his two front teeth, and he rocks it. Just try and tell me differently.

Every girl has a list of things that she wants to find in a man, but we never really expect anyone to have all of those traits. I found them. Every single requirement on my list was checked off when I met David. I am truly the luckiest girl in the world.

I Can't Hear You in the Dark

Hard of hearing. That's what I am. The older I get, the worse it gets. Most people are generally sympathetic, but no one really understands how isolating it is. And because I don't look physically disabled, people don't get it. A few days ago someone exclaimed, "Wow, you really are deaf!"....ummmm, yes, I AM!!! Did you think I was lying??!! Geez. Maybe I'll get a wheelchair so you can see that I have a disability, telling you doesn't work.

Look me up on IMDB

You may remember a few years ago when I had my breakout role as a movie star. I was cool and collected. There was no nervous laughter and I didn't fiddle with my hair at all. I was a huge star at the car dealership rally convention thing. Thanks, Shaun!




My friend Jason saw my video and realized my incredible potential. Look for me in his movie set to debut next year http://www.thecthulhukey.com/. And in the meantime, check out his first attempt at a music video. Pretty darn good, eh?

Seeds

I need to start a garden.

One Sided Argument

If a tree falls in the forest, and no one hears it, does it make a sound? If two people argue, and one of them doesn't hear the argument, can the damage be undone?
-YZ Chin

Directions

Yesterday, Jacob asked me how to get to Staples. I gave him directions, but I knew that he would call me when he got lost. Sure enough, ten minutes later I received the call. I again explained to him that it was right beside the Target, by the Petco (Petsmart?) in the same parking lot. He hung up.

As expected, he called again. I again, frustratedly explained that it is in the SAME PARKING LOT he was currently driving aimlessly through. He hung up.

He called again, utterly confused. This is typical for him, as he gets lost anytime he pulls from the driveway. Finally he asked the right question, "Are we talking about the same place?" I said "Yes, Staples is in the Target parking lot."

Yeah, he was looking for Blockbuster. I don't know how I got that wrong. Blockbuster doesn't even rhyme with Staples.

Moral of the story: Don't ask a deaf and directionally challenged person for directions. Chances are you won't find what you're looking for.

Lyrical Woes

I love music. But for me, it takes a lot of effort to listen to most songs. If the song is catchy, I want to learn the words. I can't hear the words. That makes life rather difficult.

A few years back, I was loving Macy Gray's "I Try." The lyrics to the chorus are "My world crumbles when you are not here." I couldn't figure out what the words were, so I made up my own. I would drive down the street singing at the top of my lungs "I blow bubbles when you are not here."

I must admit, having a hearing loss isn't all bad. It makes my life much more interesting than the average Jane.

Send in the clowns

No, wait...send out the clowns. I no longer live in the circus tent. Red, green, yellow....gone! There is still a circus upstairs, but whatever. I avoid going up there to save my own sanity and to avoid catching the plague.

Oblivious

This is a pic of a lonely french fry that landed on my dashboard during in a feeding frenzy. I have no idea how long it’s been there. I can’t even remember the last time I ate fries in my car.

Waivering

I have always envied runners. That envy is gone. Running holds no joy for me. If it weren’t for David, I would have quit months ago. I hate being a quitter though. Half finished projects make me anxious. I vowed to end it last night, but now I feel guilty and want to continue….but I really don’t. I’m torn between living up to my commitment and putting the brakes on something that I’ve come to loathe. Not to mention the fact that David has lost almost 25 pounds and I’ve gained 3. Boys are rude.

Frizzies and friends

Does anyone really bother to fix their hair when it has been raining for a week straight?

I hate driving. I'm mostly a nice person, but when I get behind the wheel my patience drops to zero. This morning I was stuck behind a woman going incredibly slow and I felt a bit of road rage come upon me. After what felt like hours, I was able to pass. I glanced at the driver, and for a split second, I thought she was a friend of mine. Whoops. That could have been interesting, eh? I wonder if anyone has ever gone psycho on a friend during a road rage incident.

Thought for the day

I've always been a firm believer in owning up to my mistakes and rectifying them myself. Why doesn't everyone else live by this idea? It boggles the mind. You dig a hole, you fill it.....and if you fall into it and break your leg before that happens, then you get no sympathy from me. Take responsibility and stop blaming others for your problems. Man up.

Buy it or Else!

I heard that with the economy in the pooper, bottled water companies are having a super hard time.

It's true. Back in the day, I would get a phone call a month asking me to switch brands. Lately, it's a phone call an hour. They range from simple boring harassment to menacing verbal tirades. I half expect one of them to be hidden in the backseat of my car when I leave the parking lot. Anything for a sale, right?