I was hanging out on the Cochlear site, specifically on the BAHA section this evening and came across something that really resonated with me. Hopefully Cochlear won't be irritated at me for copying this verbatim...
For people who suffer from SSD, the limitations presented when this loss occurs are life changing. The reality is that many with SSD have to make very significant life changes. Simple everyday activities, such as those listed below, can become stressful and challenging:
* Crossing the street
* Attending professional meetings
* Going to restaurants
* Interacting with friends and family at social gatherings
* Bicycling
* Jogging
* Driving a car
In group situations loud sounds can be overwhelming and the simplest things in life can become major obstacles. In many cases this leads to the individual with SSD isolating him- or herself - both socially and professionally.
This is probably the best and most succinct piece I have ever seen about being Single Side Deaf. In fact, there is nothing I would add to this. Everyone who lives with, or knows someone who is SSD should take a look at this - it will help you to understand what life is like for us. Not looking for pity here, by the way.
I am in the beginning stage of getting a BAHA. If it can mitigate or eliminate any of these issues, I will consider it completely worth it to have a bolt in my head. And, as Willie pointed out, if I decide I don't like it, I'll still have something to hang my dirty clothes on...
Tuesday, October 5, 2010
Thursday, September 30, 2010
Progress Report
I just got back from my 2-day follow up with Jackie Diels in Madison, WI. If you don't remember, I went to see Jackie for 3 days this past February to start the rather arduous process of neuromuscular facial retraining. Which is doc-speak for facial physical therapy. I have spent many, many hours doing very specific exercises and stretches to help manage the synkinesis that resulted from damage to my facial nerve. Synkinesis, if you don't know, is when the nerves heal wrong and send the wrong message to muscles in the affected area. For example, when I smile, my right eye tries to close and my right lip pulls up. Weird stuff like that.
Rather than try to write about the improvements, I am just going to post a couple of pictures that will illustrate the progress more than any 1,000 words. So, take a look...
First picture was taken in February, when I first went to see Jackie. This is my face at rest with eyes closed. The second picture was taken this week after working with Jackie for 2 days. Notice how my lip pulls up in the first picture, and then look at how symetrical it looks in the second picture. It is a little hard to see, but also notice that my right eye does not fully close in the first picture.
Okay, so here is another before/after with me compressing my lips. In the first picture, you can see that my right eye is half closed and the chin is all dimpled (also synkinesis) whereas in the second picture my eyes are symmetrical and there is minimal chin movement.
I am sure that the photos do not do this process complete justice since part of the improvement has to do with sensation and lack of pain which, of course, you can't see. However, I think these pictures do give a good depiction of the visible changes that have occurred. Stay tuned...
Rather than try to write about the improvements, I am just going to post a couple of pictures that will illustrate the progress more than any 1,000 words. So, take a look...
First picture was taken in February, when I first went to see Jackie. This is my face at rest with eyes closed. The second picture was taken this week after working with Jackie for 2 days. Notice how my lip pulls up in the first picture, and then look at how symetrical it looks in the second picture. It is a little hard to see, but also notice that my right eye does not fully close in the first picture.
Okay, so here is another before/after with me compressing my lips. In the first picture, you can see that my right eye is half closed and the chin is all dimpled (also synkinesis) whereas in the second picture my eyes are symmetrical and there is minimal chin movement.
I am sure that the photos do not do this process complete justice since part of the improvement has to do with sensation and lack of pain which, of course, you can't see. However, I think these pictures do give a good depiction of the visible changes that have occurred. Stay tuned...
Friday, September 17, 2010
Viva Ireland!
Okay, I know I've been off the grid for awhile (hey, like that? I learned it from watching way too much "24"). Willie and I had a fantastic 11 days in Ireland. A highlight of the trip was meeting Lorenzo and his wife - finally! Lorenzo and I have shared stories, recipes and laughs for the last few years over the internet, but this was our first face-to-face meeting. And what fun!! We had more laughs, ate lots of great food and shared some funny brain tumor war stories. And Lorenzo and Sheila pointed us to some great spots as we continued our travels around the southwest coast of Ireland. 
So, what are the other highlights? Well, driving on the "wrong" side of the road is a thrill. And when you add twisty one lane roads that are meant for 2 lanes of traffic - well, can you say "WHEEEE?" Willie said that he spent the entire time in a state of terror (which is par for the course for all of our vacations.) As for me, I was screaming that he was too close to the left side of the road.
Okay, but seriously ... the coastlines and countryside are breathtaking. You can easily understand why people call it the "Emerald Isle." The coastline is a stunning combination of immense sandy beaches and rugged rocky cliffs. Really, it is just amazing. And, did I mention the sheep? OMG, sheep everywhere, including right in the middle of the road. I was ordering Willie to stop the car every two minutes so I could get out and look at the sheep. Yeah, I know - that was a little something that he didn't know when he married me 10 years ago. I am fascinated by livestock. Really. We will definitely return to Ireland. There are more sheep to see, more food to be eaten, and more breathtaking sights to discover.
Sunday, August 15, 2010
Ba-Ha-Ha-Ha
That is the sound I like to make just before I head out for vacation! But, today, it has another meaning...
You might recall that I am deaf on one side thanks to the Big Brain Tumor Adventure of 2008. I must say that the first year after surgery I was dealing with so many other things (like a paralyzed face) that I didn't really realize how frustrating it was going to be to have impaired hearing.
Most people equate this to a hearing loss, as in diminished hearing. It's actually quite different. My hearing on the Left side is excellent - really, I can hear a mouse fart in the woods. Unless there is any sort of background noise ... lawnmowers, air conditioners, people talking, music, wind in the trees, etc. And you'd be amazed at how much background noise exists in our normal, day to day lives! The more sources of noise there are, the more strain it puts on my "good" ear and my brain. You see, when you have a total hearing loss on one side, you lose the ability to be able to filter noise effectively. All the noises arrive at the good ear at the same time, which makes it quite difficult for your brain to process each noise individually. What frequently happens is that all you really hear is a blast of noise - voices tend to run together, background noise overrides other noises that you would normally be able to isolate. All in all, it is frustrating and it is also very tiring. So, why am I talking about this? (And, no, I'm not whining...)
Well, several weeks ago I went to get my hearing checked in my good ear (a yearly occurrence now since it is the only ear I have left). While I was there, I had them evaluate me for a Bone Anchored Hearing Device (Baha, by Cochlear). This is a pretty cool thing that allows your skull to conduct sound waves to your "good" ear. It is also a pretty major commitment. It involves having a titanium "abutment" (think screw) embedded in your skull above the deaf ear. Once the screw has been occified into the mastoid bone of your skull (which takes about 3 months), you can then snap a small sound processor onto the abutment and ... voila, you have some degree of bilateral hearing! Of course, once the screw is in there, it is there for life, so you kind of need to be sure you are okay with that. If you can embrace your inner Frankenstein, though, it seems like a good way to simulate some sort of normal hearing.
Like all things, it has some limitations. Friends who have a Baha tell me that it doesn't "sound" like regular hearing, it has a bit of a tinny sound to it. And, most people still can't tell where sound is coming from (directionality, or localization.) But, it does allow you to know when someone on your deaf side is talking. And, it does allow you to filter some of the background noise which makes it easier to comprehend words. It even has a little adapter so that you can plug in a device like an iPod.
So, over the next few weeks, I will be making a decision to whether I want to become a "bolt head." And, if the decision is yes, then I will start what will surely be a battle royal with the insurance company to cover the operation and device.
If you'd like to know more about the Baha, you can check out their website at
http://products.cochlearamericas.com/baha/introduction-to-baha
You might recall that I am deaf on one side thanks to the Big Brain Tumor Adventure of 2008. I must say that the first year after surgery I was dealing with so many other things (like a paralyzed face) that I didn't really realize how frustrating it was going to be to have impaired hearing.
Most people equate this to a hearing loss, as in diminished hearing. It's actually quite different. My hearing on the Left side is excellent - really, I can hear a mouse fart in the woods. Unless there is any sort of background noise ... lawnmowers, air conditioners, people talking, music, wind in the trees, etc. And you'd be amazed at how much background noise exists in our normal, day to day lives! The more sources of noise there are, the more strain it puts on my "good" ear and my brain. You see, when you have a total hearing loss on one side, you lose the ability to be able to filter noise effectively. All the noises arrive at the good ear at the same time, which makes it quite difficult for your brain to process each noise individually. What frequently happens is that all you really hear is a blast of noise - voices tend to run together, background noise overrides other noises that you would normally be able to isolate. All in all, it is frustrating and it is also very tiring. So, why am I talking about this? (And, no, I'm not whining...)
Well, several weeks ago I went to get my hearing checked in my good ear (a yearly occurrence now since it is the only ear I have left). While I was there, I had them evaluate me for a Bone Anchored Hearing Device (Baha, by Cochlear). This is a pretty cool thing that allows your skull to conduct sound waves to your "good" ear. It is also a pretty major commitment. It involves having a titanium "abutment" (think screw) embedded in your skull above the deaf ear. Once the screw has been occified into the mastoid bone of your skull (which takes about 3 months), you can then snap a small sound processor onto the abutment and ... voila, you have some degree of bilateral hearing! Of course, once the screw is in there, it is there for life, so you kind of need to be sure you are okay with that. If you can embrace your inner Frankenstein, though, it seems like a good way to simulate some sort of normal hearing.
Like all things, it has some limitations. Friends who have a Baha tell me that it doesn't "sound" like regular hearing, it has a bit of a tinny sound to it. And, most people still can't tell where sound is coming from (directionality, or localization.) But, it does allow you to know when someone on your deaf side is talking. And, it does allow you to filter some of the background noise which makes it easier to comprehend words. It even has a little adapter so that you can plug in a device like an iPod.
So, over the next few weeks, I will be making a decision to whether I want to become a "bolt head." And, if the decision is yes, then I will start what will surely be a battle royal with the insurance company to cover the operation and device.
If you'd like to know more about the Baha, you can check out their website at
http://products.cochlearamericas.com/baha/introduction-to-baha
Tuesday, August 10, 2010
LaZ Boy
Okay, first let me fall on my own sword. I can't believe it has been nearly a month since I blogged. Mea culpa. I will use the excuse that I've been busy, but that's pretty weak.
So, what inspired me today? Well, actually it is something that I've been driving past for the last year. And, every time I see it, it bothers me. What am I talking about? The LaZ Boy.
There are a couple of things here that are concerning me. First, and perhaps most obvious, is the fact that this cloth recliner (LaZ Boy, if you will) sits out front of this store on NJ State Route 206 day after day, rain or shine. Think about it. Can you even imagine how nasty it must smell? Euw. And how many mice call it home? It boggles the mind. Frankly, the reason this picture isn't great is because I was afraid to get out of my car and approach the damned thing. There is nothing that would induce me to buy a recliner from this place. NOTHING.
But here is the thing that really concerns me, and something I think you men should rise up and fight about. LaZ Boy. Why not LaZ Girl? Or, even better, how about a gender-neutral LaZ Person? Men, if I were you, I'd be plenty pissed about this! And, I wouldn't stand for it!! Rise up and revolt! Don't let the recliner people imply that you are lazy, or that you are boys. Enough, I say!
So, what inspired me today? Well, actually it is something that I've been driving past for the last year. And, every time I see it, it bothers me. What am I talking about? The LaZ Boy.
There are a couple of things here that are concerning me. First, and perhaps most obvious, is the fact that this cloth recliner (LaZ Boy, if you will) sits out front of this store on NJ State Route 206 day after day, rain or shine. Think about it. Can you even imagine how nasty it must smell? Euw. And how many mice call it home? It boggles the mind. Frankly, the reason this picture isn't great is because I was afraid to get out of my car and approach the damned thing. There is nothing that would induce me to buy a recliner from this place. NOTHING.
But here is the thing that really concerns me, and something I think you men should rise up and fight about. LaZ Boy. Why not LaZ Girl? Or, even better, how about a gender-neutral LaZ Person? Men, if I were you, I'd be plenty pissed about this! And, I wouldn't stand for it!! Rise up and revolt! Don't let the recliner people imply that you are lazy, or that you are boys. Enough, I say!
Tuesday, July 13, 2010
Scarred For Life
No, I’m not referring to the scar on the side of my skull, although to tell the truth, it's pretty impressive. I’m talking about some of the things I am forced to look at as I go about my day. Take, for example, the guy I saw strutting down the side of a busy country highway – no shirt, big furry belly. Euw. Will I ever be able to get that image out of my head??
And, that got me to thinking about some of the other things that no human being should ever have to see. Let’s start with big girls in skinny jeans and tube tops. Whoa. That paints a picture, doesn’t it? I take small comfort in knowing that these girls are paying attention to the “tanning is bad for you” message, which I know to be true by seeing the expanse of lily white flesh flowing over the top of said skinny jeans. I ask you – how is it possible that anyone actually think that this is attractive???
And, while I am at it, let’s talk about Spandex. I was going to suggest that no woman (or man) over the age of 16 should be allowed to own spandex, but maybe I am being too generous. I say we outlaw it all together. I can’t think of a single person whose looks improve with spandex. Can you?
Finally, what about butt cleavage??? You know what I’m talking about – don’t pretend like you’ve never seen this. Because I know that once you’ve seen butt cleavage, the image is burned into your retinas for life. And, ladies, I’m not just talking about the guys here! Butt cleavage on ladies isn’t very attractive either. Seriously, get a belt or suspenders, or pants that fit. We don’t want to see your but – period!
I am sure some of you will have more suggestions to beautify our world, protect our eyes, and prevent us from undue trauma. Right?
And, that got me to thinking about some of the other things that no human being should ever have to see. Let’s start with big girls in skinny jeans and tube tops. Whoa. That paints a picture, doesn’t it? I take small comfort in knowing that these girls are paying attention to the “tanning is bad for you” message, which I know to be true by seeing the expanse of lily white flesh flowing over the top of said skinny jeans. I ask you – how is it possible that anyone actually think that this is attractive???
And, while I am at it, let’s talk about Spandex. I was going to suggest that no woman (or man) over the age of 16 should be allowed to own spandex, but maybe I am being too generous. I say we outlaw it all together. I can’t think of a single person whose looks improve with spandex. Can you?
Finally, what about butt cleavage??? You know what I’m talking about – don’t pretend like you’ve never seen this. Because I know that once you’ve seen butt cleavage, the image is burned into your retinas for life. And, ladies, I’m not just talking about the guys here! Butt cleavage on ladies isn’t very attractive either. Seriously, get a belt or suspenders, or pants that fit. We don’t want to see your but – period!
I am sure some of you will have more suggestions to beautify our world, protect our eyes, and prevent us from undue trauma. Right?
Tuesday, June 22, 2010
WHAT???
Usually when I utter the word "What" it means that I didn't hear something (that whole single side deaf thing.) However, today's "What" is about something entirely different, something I've been having an internal rant about for some time now. The "What" I refer to is the absolutely ridiculous signs that I see being proudly displayed as if the owner didn't have a single working brain cell. Yep, I'm getting wound up! Get ready!
The latest "What" sign is this one. Take a good look at it. Consider it. Ask yourself these questions:
1) Who is "We"
2) What is "We" renting?
3) Assuming that I actually wanted to rent whatever it is that "We" is offering, how in Hell would I contact them?
Seriously. This sign (We Rent) is sitting on a vacant lot with only dirt and boulders - nothing else. It's killing me. I want so much to meet whatever Einstein put this up and ask them the compelling question - What were you thinking???
Frankly, this sign is even more confounding than the one at the local convenience store that says "Free Coffee with Bait." Huh? Does that mean that the coffee has small fish in it? What if I don't want bait with my coffee? Can I get coffee sans bait?
Seriously...
The latest "What" sign is this one. Take a good look at it. Consider it. Ask yourself these questions:
1) Who is "We"
2) What is "We" renting?
3) Assuming that I actually wanted to rent whatever it is that "We" is offering, how in Hell would I contact them?
Seriously. This sign (We Rent) is sitting on a vacant lot with only dirt and boulders - nothing else. It's killing me. I want so much to meet whatever Einstein put this up and ask them the compelling question - What were you thinking???
Frankly, this sign is even more confounding than the one at the local convenience store that says "Free Coffee with Bait." Huh? Does that mean that the coffee has small fish in it? What if I don't want bait with my coffee? Can I get coffee sans bait?
Seriously...
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