I was getting up on the Acoustic Neuroma patient forum today and came across a link for a very well-written essay on single sided deafness. I think this is a good read for anyone who is SSD, as well as those who have the pleasure of living with those of us who are SSD. Enjoy...
http://tribalvillages.org/deaf-essays/single-sided-deafness.html
Tuesday, May 24, 2011
Thursday, May 12, 2011
BAHA - Ha Ha
First, let me say that I am very, very happy with my new digital ear! It is interesting that when I am wearing it, I don't even notice that I have it on. By that, I mean that I don't consciously "hear" anything differently. But, there are times when I am struck with the sudden realization that I am hearing something that I never would hear without the BAHA. Case in point - I recently had a group of my girlfriends over and we were all sitting around the dinner table talking. And, let me just say, they can talk a LOT. Well, everyone was talking at the same time, which is usually death for me since all I hear are random words. As I was sitting there, I suddenly realized that I could hear the friend on my deaf side PERFECTLY! That was one of my big (B)AHA moments.
And, of course, as with all things brain-tumor related, there are also funny moments... I was recently putting some things in the back of my little SUV and as I was leaning in to set something in the back, my head made contact with the door of the car and - WHAM - off my BAHA flew! It hit the pavement and rolled under my car which triggered some extremely colorful and inventive language from me. Down on my hands and knees, I retrieved the little guy and, with heart in throat, attached it to my head. Success!! It was none the worse for hitting the ground at maximum speed. Now, that said, I don't suggest that anyone start hurling their BAHA around with reckless abandon.
I am currently helping to rehab my in-law's 40-something year old house, which is providing all kinds of interesting balance challenges. The miracle is that I haven't fallen into a paint tray yet. But, there is still time...
And, of course, as with all things brain-tumor related, there are also funny moments... I was recently putting some things in the back of my little SUV and as I was leaning in to set something in the back, my head made contact with the door of the car and - WHAM - off my BAHA flew! It hit the pavement and rolled under my car which triggered some extremely colorful and inventive language from me. Down on my hands and knees, I retrieved the little guy and, with heart in throat, attached it to my head. Success!! It was none the worse for hitting the ground at maximum speed. Now, that said, I don't suggest that anyone start hurling their BAHA around with reckless abandon.
I am currently helping to rehab my in-law's 40-something year old house, which is providing all kinds of interesting balance challenges. The miracle is that I haven't fallen into a paint tray yet. But, there is still time...
Saturday, April 30, 2011
Happy AN-niversary!
We are currently in the middle of renovating my in-laws house, after relocating them to Huntsville, AL two weeks ago. So, I woke up this morning aching in just about every part of my body, thinking - "wow, I feel like crap." And, then it occurred to me that exactly three years ago today I was about two hours in to a roughly 6 hour brain surgery. Hm, that makes today's aches and pains feel a little less achy and painy. The TRUE definition of "feeling like crap" is when you wake up in a noisy recovery room in a major NYC hospital, with a tight (really tight) pressure dressing around your head, pink "oops" tray nestled under your chin, another dressing on your belly, head swelled up to the size of the Goodyear Blimp, and tubes and wires hanging out of every part of your body. Yep, that will always and forever define "crap" for me!
Yep, that puts a good perspective things. Three years later, I am adept at avoiding balance-challenging situations, a master at the head-swivel to hear what people on my deaf side are saying, and relatively good at keeping food in my mouth where it belongs. I will celebrate the day by arming myself with paint and spackle and doing battle with "the house." Then, later today, I plan to open up a bottle of something nice (and, no, I'm not talking Coke, folks) and celebrating my AN-niversary! Care to join me?
Yep, that puts a good perspective things. Three years later, I am adept at avoiding balance-challenging situations, a master at the head-swivel to hear what people on my deaf side are saying, and relatively good at keeping food in my mouth where it belongs. I will celebrate the day by arming myself with paint and spackle and doing battle with "the house." Then, later today, I plan to open up a bottle of something nice (and, no, I'm not talking Coke, folks) and celebrating my AN-niversary! Care to join me?
Wednesday, March 9, 2011
Three Years...
It is hard to believe that it has been three years since I heard those fateful words "You've got a brain tumor." I was diagnosed March 4, 2008. Three years ago, I was in a frenzy of researching and discovery. Things like craniatomies, neuro-muscular facial retraining, and bahas were completely foreign to me.
Now I am sitting here with a little digital box snapped on the side of my head, lots of titantium in my skull, a sometimes goofy smile and a few interesting scars. Holy crap. These are the things that come along in life that are completely unexpected and certainly game-changing.
As for me, I've had some ups and downs in the last 3 years, but I'd have to say that the ups outweigh the downs by quite a lot. When things like this come along in life, you really only have a few choices: you can adjust and find things to love (or at least like) about your new life, or you can sink into a vat of endless depression. Well, when I put it like that, not really much of a choice, is there? Those vats of depression are actually pretty boring. So now I just chuckle when I suddenly stumble or when I think the host of American Idol said "stink bombs" when he actually said "stage moms." And, when I get frustrated that I can't do everything I could do PBT (Pre Brain Tumor), I remind myself of all the wonderful people I've met along this journey, about the lasting friendships I've made, and about all the little things in life that have changed in good ways.
And, hell, if all else fails, I can always have a nice glass of something red - and I'm not talking fruit punch!
Now I am sitting here with a little digital box snapped on the side of my head, lots of titantium in my skull, a sometimes goofy smile and a few interesting scars. Holy crap. These are the things that come along in life that are completely unexpected and certainly game-changing.
As for me, I've had some ups and downs in the last 3 years, but I'd have to say that the ups outweigh the downs by quite a lot. When things like this come along in life, you really only have a few choices: you can adjust and find things to love (or at least like) about your new life, or you can sink into a vat of endless depression. Well, when I put it like that, not really much of a choice, is there? Those vats of depression are actually pretty boring. So now I just chuckle when I suddenly stumble or when I think the host of American Idol said "stink bombs" when he actually said "stage moms." And, when I get frustrated that I can't do everything I could do PBT (Pre Brain Tumor), I remind myself of all the wonderful people I've met along this journey, about the lasting friendships I've made, and about all the little things in life that have changed in good ways.
And, hell, if all else fails, I can always have a nice glass of something red - and I'm not talking fruit punch!
Tuesday, March 1, 2011
(B)AHA Moments
So, not quite a week into the BAHA experience and so far, I'm loving it. Yes, I'm the woman with a finger in one ear, snapping her fingers next to the other ear. It's just SO cool to be able to hear those sounds!
Today, I'll really get to put it to the test. I have to take our conspiracy theorist cat, Rocket, to the vet. Now, just as a bit of background, this is a 12 pound cat who requres two burly technicians to hold him down for a simple exam. And, did I mention the screaming? Him, not me, by the way, although maybe I ought to consider screaming myself. Anyway, I anticipate reaching up and turning the BAHA off at some point during what promises to be a very "lively" experience.
And here are few other pictures, just for fun.
Today, I'll really get to put it to the test. I have to take our conspiracy theorist cat, Rocket, to the vet. Now, just as a bit of background, this is a 12 pound cat who requres two burly technicians to hold him down for a simple exam. And, did I mention the screaming? Him, not me, by the way, although maybe I ought to consider screaming myself. Anyway, I anticipate reaching up and turning the BAHA off at some point during what promises to be a very "lively" experience.
And here are few other pictures, just for fun.
Friday, February 25, 2011
Gotcha Day!
In the acoustic neuroma, single side deaf community, "Gotcha Day" is code for "I got my BAHA!" So, yes, I now officially look like a Borg.
After last week's snafu with the processor, the people at NYU Med and Cochlear jumped through hoops and got my processor shipped out and squeezed me into the schedule on Wednesday. So, bright and early Weds morning I headed to the train station to make the long trek into NYC and across town
to NYU. The audiologist went through all of the instructions for the baha, including how to get the thing snapped onto my head (easier said than done, my friends!) After arming me with as much knowlege as possible, she sent me on my way with a warning to remove the device if I felt that the sensory input was too much at any point. She reminded me several times that my brain has had 3 years to get used to NOT hearing on that side, so it would need longer than 15 minutes to acclimate to the BAHA.
I am happy to say that I walked across town (about a mile on the noisy streets of NYC) to the train station and took the 2-hour train ride home without incident. Then, I insisted that Willie take me out for dinner just so that I could take the BAHA for a test drive in a restaurant situation.
I must say that this device is exceeding my expectations! It is really amazing how well it works! I find myself plugging my "good" ear at odd times during the day just so that I can hear things through the BAHA. The sound is different, quite tinny. But the kind of amazing thing is that as soon as my good ear kicks in, I don't hear the tinniness of the BAHA anymore. Had lunch with a group of friends yesterday and kept surrepticiously reaching up and blocking my good ear just so that I could revel in the sensation of hearing everyone from my digital ear. Very, very cool!
On the down side, my hair doesn't hide it quite as well as I would have liked, but what the hell. I went around with a half paralyzed face for quite a few months, so walking around with a Borg-like device snapped to the side of my head isn't such a big deal. If anyone has school-aged kids, I am the ULTIMATE Show-and-Tell prop.
So here are some pictures, for those of you who aren't acquainted with the baha... First shows the processor through my hair (I pulled my hair aside for this, usually it wouldn't show), the next gives you and idea as the size, compared to a US quarter, and the last is just another close look at my nifty digital ear...
After last week's snafu with the processor, the people at NYU Med and Cochlear jumped through hoops and got my processor shipped out and squeezed me into the schedule on Wednesday. So, bright and early Weds morning I headed to the train station to make the long trek into NYC and across town
to NYU. The audiologist went through all of the instructions for the baha, including how to get the thing snapped onto my head (easier said than done, my friends!) After arming me with as much knowlege as possible, she sent me on my way with a warning to remove the device if I felt that the sensory input was too much at any point. She reminded me several times that my brain has had 3 years to get used to NOT hearing on that side, so it would need longer than 15 minutes to acclimate to the BAHA.
I am happy to say that I walked across town (about a mile on the noisy streets of NYC) to the train station and took the 2-hour train ride home without incident. Then, I insisted that Willie take me out for dinner just so that I could take the BAHA for a test drive in a restaurant situation.
I must say that this device is exceeding my expectations! It is really amazing how well it works! I find myself plugging my "good" ear at odd times during the day just so that I can hear things through the BAHA. The sound is different, quite tinny. But the kind of amazing thing is that as soon as my good ear kicks in, I don't hear the tinniness of the BAHA anymore. Had lunch with a group of friends yesterday and kept surrepticiously reaching up and blocking my good ear just so that I could revel in the sensation of hearing everyone from my digital ear. Very, very cool!
On the down side, my hair doesn't hide it quite as well as I would have liked, but what the hell. I went around with a half paralyzed face for quite a few months, so walking around with a Borg-like device snapped to the side of my head isn't such a big deal. If anyone has school-aged kids, I am the ULTIMATE Show-and-Tell prop.
So here are some pictures, for those of you who aren't acquainted with the baha... First shows the processor through my hair (I pulled my hair aside for this, usually it wouldn't show), the next gives you and idea as the size, compared to a US quarter, and the last is just another close look at my nifty digital ear...
Wednesday, February 16, 2011
B DAY
Well I just got done writing a post about how tomorrow was my long-awaited BAHA day. Unfortunately, the stars are not aligning for me this week. I just got a call from the audiologist's office basically saying, "oops, we screwed up and we don't have your BAHA processor after all.". (Insert long string of curse words here.) And, of course, they don't know how long it will take to arrive, so I have no idea when I will be able to reschedule. So, it looks like it will be awhile longer before I have a shot at stereo hearing.
Stay tuned...
Stay tuned...
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