Audiology appointment today. First time in months. Not what I expected. I thought the CI levels would be "turned up," but -
Okay, this might need a tutorial. See I have a remote that goes with the CI. A currently missing remote which I hope I tucked into a drawer at work and just overlooked Friday while searching for it because I turned my room and both cars inside out and cannot.find.it.
By the way, my sister would NEVER lose a remote this important. Ever. I wish that I had one-tenth her ability to be organized.
Come to think of it, my brother probably wouldn't lose it either. Now. He might have in high school, though.
Whoops. Jumped track there. So on this remote are different levels and situations that my CI can be tuned to, all with the push of the button. Back in September when I was feeling like things were not loud enough (and knew where my remote was!), I actually switched it to setting 3, which was the highest of the settings available at that time.
Turns out setting 3 is pretty dang near normal hearing levels.
When GOA tested me today, I was hearing lower frequencies within the range that someone with "normal hearing" would. Higher frequencies are peskier especially for me since my hearing loss is much worse in the higher frequencies, and he did turn up those just a smidge, but he didn't mess with the lower frequencies.
Nevertheless, what I really need, he said, is just more time. And time. And time.
Don't get too excited about these "normal hearing levels." That just means I can distinguish the presence of a sound at decibel levels that a person with normal hearing can detect, it does NOT mean I am understanding sounds or voices like a hearing person is able to. I'm not even close to that. Read on for a better idea what I mean.
BTW, speech reading = lip reading. I grew up using "lip reading," but as I learned in my deaf ed classes and by working with GOA, the term has shifted to "speech reading" to give a better idea of the depth involved because it is really not just lips that are being read, but many aspects of the face.
Anyway.
GOA tested me with very random sentences. I mean these things were R.A.N.D.O.M. One might be something like, "Her sister struggled with anorexia", and the next one might be "How dare you think I am a spineless wimp!" Yeah. Like that.
He read about 15 or 20 of these suckers under 4 conditions (and the sentences changed with each condition; they were not repeated). First was CI only (no speech reading). Second was CI and hearing aid (no speech reading). Third was CI, hearing aid AND speech reading. Fourth was speech reading only (no sound).
With CI only, I understood 5%.
With CI and hearing aid, I understood 11%.
With CI, hearing aid and speech reading, I understood 97%!
With speech reading only, I understood about 32%.
You gotta keep in mind, too, that words like "I" and "You" counted. They probably made up 1/2 of what I understood with the CI and hearing aid. So that is pretty low, but I guess it might help people understand what is going on with my brain. You also gotta consider that this was a controlled test. You put me in the outside world, with all that background noise, and all the numbers will drop.
So I have a long, long way to go. It is pretty exciting though, when these random noises coalesce into recognizable words without the advantage of speech reading. It's not happening a lot, but it happened 3 times on Friday. Yep, I counted.
I don't really know how I am feeling today. Tired. GOA mentioned how much energy it takes for people going through this to "hear". It really, really does. I'm tired. I'm still struggling mentally, but I don't really want to talk about that today. My last entry was like a mental vomit. I don't want to go there right now.
Monday, October 15, 2012
Wednesday, October 3, 2012
Round and Round
Hard to believe that just about a week or so ago, I was marveling at eggshells plinking into a trashcan. I want to be that Carolyn again. I hate being this Carolyn. This is what bipolar is like, folks. Going from joy to despair in a matter of days. Sometimes a matter of hours.
I was trying to think of a way to describe "this Carolyn" and when "down in the dumps" popped into my mind, it made me think about what a disservice descriptions like that do to people who suffer from bipolar disorder or major depression, as if there is a deliberate wallowing going on.
There's very much a "pick yourself up by your bootstraps" mentality that many people have towards these illnesses, which is as ludicrous as telling a cancer patient to take an aspirin and get a good night's sleep. I'm not making light of cancer here, lest you take it that way. I lost my grandmother to cancer. I lost one of my best friends to cancer. My mom is lucky to be a breast cancer survivor, but several of my good friends have lost their mothers to cancer. I would never, ever make light of cancer. Instead I'm just despairing of the cavalier attitude and ignorance, oh, so much ignorance, that many people have about mental issues.
I read an article not too long ago (sometime in the last year anyway) and I wish I could find it to link to it. This woman had suffered from bipolar disorder for decades and she said, "It's not that I won't be happy or don't want to be happy, it's that I CAN'T be happy. My brain isn't wired that way." I read it and was like, "Yes. This."
I actually felt a feeling of relief that someone out there was able to put it into words. I want to be happy. Doesn't everyone? But it feels like most days it is a struggle for me to even be functioning. The wiring in my brain is screwed up. We don't know how or why. It does not run in my family. We have speculated before that maybe having meningitis could have altered my brain chemistry to that extent. Little research has been done about a possible correlation although I did uncover research that links CNS (central nervous system) infections in childhood to a slightly increased risk of schizophrenia in adulthood. If that is the case, I wouldn't imagine it would be a big leap to bipolar.
All I really know is that it is a terrible way to live. I have bipolar II which is a "softer" version. Lucky me. All that means is I don't have true manic phases, but instead I have hypomania which can manifest in many ways. For me it is usually anger, racing negative thoughts, fear and anxiety. The depressions, though, there is nothing softer about the depressions. They are soul-suckers.
Women with bipolar II are more likely to have substance abuse issues than the average woman. Yep. Women with bipolar II are more likely to have weight issues and obesity than the average woman. Check. It's the self-medicating. For years it was alcohol. When I got sober, it became food.
It often takes years for bipolar II to be correctly diagnosed because it often manifests more as major depression, so psychiatrists are more likely to treat it with anti-depressants and anti-depressants often make bipolar II worse. So years to get diagnosed and sometimes years to get the medications worked out, if you ever do.
And the side effects from the medication are often horrendous. Many days I feel like a barely functioning zombie. I'm so tired all the freaking time. At the same time I'm angry. It's a weird combination as anger implies some sort of negative energy, whereas fatigue implies no energy at all.
My anger usually turns inward and I want to self-harm. I used to be a cutter. I shouldn't say used to be, really, as it has only been a few months and I fight the urge frequently. I know how crazy that sounds to almost all of you, but the best way I can describe it is that it is an external release of internal pain.
I'm scared. Looking back over the last few years, it feels like my depressions are increasing in frequency and strength. For each major depression you have, the odds of having another increase. By the time you have as many as I have had you are just about doomed to have more. Your neural pathways are, pardon my language, fucked.
I remember talking to my psychiatrist in early June. I had a depression from about February to the end of June. He said, "You are going to get through this. You always do." I replied, "Yes, and then another one will come along." He didn't know what to say to that. It's a horrible feeling to speak that awful truth and have your doctor not even know how to reply. He knew I was right so really, what could he say? I will likely have another and another and another until I die.
Don't look at me differently for this. Don't treat me differently. If you see me at work or at the gym, don't look at me with pity. But don't judge me either. Please. I'm doing the best I can.
Wednesday, September 19, 2012
Eggshells
Today at work I peeled the shell off an egg over the top of a small trashcan. No big deal, right? Who hasn't done that with a boiled egg at one point? As I dropped tiny little pieces of eggshell into the trashcan, I realized I could hear the little plink of each piece as it hit the trashcan.
Wow.
Such a small thing, but it was so super cool to me that I listened raptly for each plink. Each plink was like a mini-miracle. I think it is the first time I have not been irked by a boiled egg that was not peeling easily. You know how irritating that can be when you have to practically pry the pieces off the egg millimeter by millimeter? Not this time! I deliberately and consciously peeled off the eggshell and dropped each piece one at a time.
Plink.
Plink.
Plink.
I was completely fascinated that I could hear the pieces hitting the trashcan and I was glad to have more of them to hear.
It's been so long since I blogged about the cochlear implant. I am kinda sad that I didn't keep up with things better so I could better remember the milestones, but the whole process was so much tougher than I ever dreamed it would be that I almost lost my mind. Certainly the difficulties propelled me into yet another major depression. As someone who struggles with mental health issues, this was definitely a trigger. I would caution any adult considering this procedure to be sure you have a support system in place psychologically, too, and more than that, that you are prepared for it to be be hard as hell. I thought it was going to be a breeze.
Nope.
It was pretty bad.
I didn't want to leave my room. I couldn't stand being around anyone. Getting through the day without giving up felt almost impossible. And I don't mean giving up as in giving up my cochlear implant. I mean giving up as in "I can't take life anymore and I want to die."
Let's backtrack and I will share a few of the things I remember most.
Remember I switched to a new audiologist and it was better? It was better at first, but I kept overreaching. When I was sitting in a chair in the audiologist's office with little noise, it was hard to guess how the CI settings would transition to the "real world." What sounded manageable in those controlled circumstances could be intolerable when faced with the myriad of noises that come with reality.
This is how we arrive at a good volume for the CI - the audiologist will play a beep and I indicate at which point the beep reaches an intolerable volume. Then he does it again with another beep at another frequency, and so on.
I had only been through the process of adjusting the CI settings about 4 times, but I already had a tendency to sit in that chair and hear this isolated beep and think, "Oh, pffff, piece of cake! That's totally manageable! Turn it up!"
Naturally I would leave the controlled office environment and be assailed by sound at a volume that was really too much. That isolated beep was nothing compared to being hit with voices, traffic, air conditioning noises, keyboards, printers, footsteps, as well as a ton of random clicks, hums, beeps, whistles, screeches, thumps, yells, babbles and knocks that I couldn't even place.
My brain couldn't take it. For months. And months.
I remember one day at work, the sound of the library security gate was all I could hear. When anyone crosses over the security gate, it makes a clickclickclick sound. For just one day, that clickclickclick was CLICKCLICKCLICK to me. Then just as quickly, it receded.
Now I don't even notice it.
Then for about a two week period in April or May, the clicking of the library secretary's keyboard keys was completely overwhelming. TAPTAPTAP TAP TAP TAPTAP TAPTAPTAPTAP. Argh!! I just wanted someone to Make.It.Stop.
Sometime shortly after that I had a day or two where the background voices of the students was overwhelming. You would think that would be the case all of the time, and yes, crowd noise is often difficult, but this was even worse than usual. I was so overwhelmed by it that I couldn't even lipread. That had never happened before. I've always been able to lipread when talking one-on-one with an individual, no matter what the background situation is. (Well, unless it is dark!) But I couldn't do it and I had to have students write down everything they were trying to say to me and I remember being near tears.
That is what my brain has been doing all these months. So many unfamiliar sounds have been reaching my auditory nerve and my brain didn't and still doesn't know what to do with them all. It often focuses on one sound at a time. I guess that is my brain's way of figuring out where it goes, like a toddler sorting blocks.
My mood lifted enough after school let out for the summer that I felt like I was at least a human being again, but still, as recently as June/July, I didn't think I was going to make it with the cochlear implant.
One night I talked to my mom and told her, "I just don't think this is working for me and I don't know what to do" and then I cried. My poor Mom.
I kept wearing it, partly because I didn't want to feel like a failure, which is funny because no one, no one was putting that pressure on me. I was putting it all on myself.
Part of me kept saying, "Give it a year, give it a year." So I pushed on, mostly hating it, but not yet flushing it down the toilet or crushing it under my shoes as I sometimes fantasized about doing.
Progress felt painfully slow.
Then when I got back to work for the 2012-2013 school year, I realized that sounds were not as overwhelming. That really shocked me. I hadn't felt like I had made much progress at all, but being in the mountains for the summer and having that time to heal physically and mentally did more than I had realized.
And now, mid-September, I am ready for my cochlear implant to be "turned up" for the first time in about 6 months. I want more volume! That's pretty amazing.
I want more eggshell moments. :) It is worth it.
Wow.
Such a small thing, but it was so super cool to me that I listened raptly for each plink. Each plink was like a mini-miracle. I think it is the first time I have not been irked by a boiled egg that was not peeling easily. You know how irritating that can be when you have to practically pry the pieces off the egg millimeter by millimeter? Not this time! I deliberately and consciously peeled off the eggshell and dropped each piece one at a time.
Plink.
Plink.
Plink.
I was completely fascinated that I could hear the pieces hitting the trashcan and I was glad to have more of them to hear.
It's been so long since I blogged about the cochlear implant. I am kinda sad that I didn't keep up with things better so I could better remember the milestones, but the whole process was so much tougher than I ever dreamed it would be that I almost lost my mind. Certainly the difficulties propelled me into yet another major depression. As someone who struggles with mental health issues, this was definitely a trigger. I would caution any adult considering this procedure to be sure you have a support system in place psychologically, too, and more than that, that you are prepared for it to be be hard as hell. I thought it was going to be a breeze.
Nope.
It was pretty bad.
I didn't want to leave my room. I couldn't stand being around anyone. Getting through the day without giving up felt almost impossible. And I don't mean giving up as in giving up my cochlear implant. I mean giving up as in "I can't take life anymore and I want to die."
Let's backtrack and I will share a few of the things I remember most.
Remember I switched to a new audiologist and it was better? It was better at first, but I kept overreaching. When I was sitting in a chair in the audiologist's office with little noise, it was hard to guess how the CI settings would transition to the "real world." What sounded manageable in those controlled circumstances could be intolerable when faced with the myriad of noises that come with reality.
This is how we arrive at a good volume for the CI - the audiologist will play a beep and I indicate at which point the beep reaches an intolerable volume. Then he does it again with another beep at another frequency, and so on.
I had only been through the process of adjusting the CI settings about 4 times, but I already had a tendency to sit in that chair and hear this isolated beep and think, "Oh, pffff, piece of cake! That's totally manageable! Turn it up!"
Naturally I would leave the controlled office environment and be assailed by sound at a volume that was really too much. That isolated beep was nothing compared to being hit with voices, traffic, air conditioning noises, keyboards, printers, footsteps, as well as a ton of random clicks, hums, beeps, whistles, screeches, thumps, yells, babbles and knocks that I couldn't even place.
My brain couldn't take it. For months. And months.
I remember one day at work, the sound of the library security gate was all I could hear. When anyone crosses over the security gate, it makes a clickclickclick sound. For just one day, that clickclickclick was CLICKCLICKCLICK to me. Then just as quickly, it receded.
Now I don't even notice it.
Then for about a two week period in April or May, the clicking of the library secretary's keyboard keys was completely overwhelming. TAPTAPTAP TAP TAP TAPTAP TAPTAPTAPTAP. Argh!! I just wanted someone to Make.It.Stop.
Sometime shortly after that I had a day or two where the background voices of the students was overwhelming. You would think that would be the case all of the time, and yes, crowd noise is often difficult, but this was even worse than usual. I was so overwhelmed by it that I couldn't even lipread. That had never happened before. I've always been able to lipread when talking one-on-one with an individual, no matter what the background situation is. (Well, unless it is dark!) But I couldn't do it and I had to have students write down everything they were trying to say to me and I remember being near tears.
That is what my brain has been doing all these months. So many unfamiliar sounds have been reaching my auditory nerve and my brain didn't and still doesn't know what to do with them all. It often focuses on one sound at a time. I guess that is my brain's way of figuring out where it goes, like a toddler sorting blocks.
My mood lifted enough after school let out for the summer that I felt like I was at least a human being again, but still, as recently as June/July, I didn't think I was going to make it with the cochlear implant.
One night I talked to my mom and told her, "I just don't think this is working for me and I don't know what to do" and then I cried. My poor Mom.
I kept wearing it, partly because I didn't want to feel like a failure, which is funny because no one, no one was putting that pressure on me. I was putting it all on myself.
Part of me kept saying, "Give it a year, give it a year." So I pushed on, mostly hating it, but not yet flushing it down the toilet or crushing it under my shoes as I sometimes fantasized about doing.
Progress felt painfully slow.
Then when I got back to work for the 2012-2013 school year, I realized that sounds were not as overwhelming. That really shocked me. I hadn't felt like I had made much progress at all, but being in the mountains for the summer and having that time to heal physically and mentally did more than I had realized.
And now, mid-September, I am ready for my cochlear implant to be "turned up" for the first time in about 6 months. I want more volume! That's pretty amazing.
I want more eggshell moments. :) It is worth it.
Thursday, February 23, 2012
ToEs, ToAs, and GoAs!
One day after dubbing my cochlear implant a ToE - Thing of Evil - I feel much more benevolent towards it, courtesy of a visit with a new audiologist. (Thank you, thank you, thank you, Kate, for asking me to please get in touch with him and get a second opinion!)
One of the first things Audiologist 2.0, henceforth known as A2, no wait, that is not impressive enough. He is a God of Audiology... Audiology God. GoA? AG? No, not AG, that makes me think of Attorney General, which makes me think of Ken Cuccinelli, which makes my stomach spasm. I like GoA, we'll go with GoA. So, GoA told me almost immediately to put in my hearing aid again! He was a little surprised to hear that the other audiologist told me otherwise. He said, "This is not a race. If it benefits you, use it. This is hard enough without making it more difficult than it needs to be." He told me my brain would eventually adapt to the CI and while it may take longer if I am wearing the hearing aid also, it would also happen more naturally. Or more "organically" as a friend of mine likes to say because it sounds more intellectual and impressive (you know who you are).
GoA said that people with bilateral implants tend to do best, then people with 1 implant and 1 hearing aid, and then people with the CI only. My hearing aid does not need to be my enemy!
I almost swooned on the spot upon hearing that. My hearing aid! Green light! Go! I couldn't wait to put on my hearing aid again!
GoA said that people with bilateral implants tend to do best, then people with 1 implant and 1 hearing aid, and then people with the CI only. My hearing aid does not need to be my enemy!
I almost swooned on the spot upon hearing that. My hearing aid! Green light! Go! I couldn't wait to put on my hearing aid again!
GoA took a lot of time to explain to me what is happening in my brain. I really liked one way he put it - my brain is building a new library of sound. The Other Audiologist ... ToA ha! ... didn't really go over a lot of information with me. I felt like I was pitched into the deep end of the pool without any swimming lessons. Now I still kind of feel like I am in the deep end of the pool and can't swim ... but at least I can tread water and not drown until I learn the freestyle or the backstroke.
GoA also explained that part of the difficulty is that with the CI, my brain is putting familiar sounds in the background and focusing on unfamiliar sounds and that is why noise seems to be all I am hearing.
GoA also said that while being such a good speech reader as I am is advantageous in many ways, that it's probably making it tougher for me in adjusting to the CI because I rely so much on visual cues. He said that people who are good speech readers tend to take longer to adapt to CIs than people who are not. He wants me to try things like watching television without the caption.
He also said that the typical person needs about 3 months before they even start to feel they are adapting. It hasn't even been 3 months for me.
Why the heck was I feeling so rushed and pressured and stressed and like a big, fat failure???
GoA also explained that part of the difficulty is that with the CI, my brain is putting familiar sounds in the background and focusing on unfamiliar sounds and that is why noise seems to be all I am hearing.
GoA also said that while being such a good speech reader as I am is advantageous in many ways, that it's probably making it tougher for me in adjusting to the CI because I rely so much on visual cues. He said that people who are good speech readers tend to take longer to adapt to CIs than people who are not. He wants me to try things like watching television without the caption.
He also said that the typical person needs about 3 months before they even start to feel they are adapting. It hasn't even been 3 months for me.
Why the heck was I feeling so rushed and pressured and stressed and like a big, fat failure???
GoA also did another mapping and turned down some of the higher frequencies. He says the goal is to have them at the same volume as lower frequencies, but that can take longer and that is okay.
I feel SO much better.
Tragically, I could not put on my hearing aid as soon as I got home because as some of you may remember, my sister hid it by my request.
A few hours later I happened to glance at a wooden heart container on the bar in the kitchen and I immediately thought, "I bet Kelly put it in there." I know my sister and she would not want to put it too far out of reach just in case I really needed it. She didn't even want to take it from me in the first place!
I lifted the lid and there it was, nestled among other odds and ends.
Putting on my hearing aid was like sinking down into a warm bubble bath. Throwing on flannel pajamas straight from the dryer when it is snowing outside. Relaxing into a massage chair while having a pedicure. So comforting. I missed it and it felt good to have some familiar sound come back without feeling like I was jeopardizing the future success of the implant.
And as for tacking the television without closed caption ... I feel a Buffy Marathon coming on!
Tragically, I could not put on my hearing aid as soon as I got home because as some of you may remember, my sister hid it by my request.
A few hours later I happened to glance at a wooden heart container on the bar in the kitchen and I immediately thought, "I bet Kelly put it in there." I know my sister and she would not want to put it too far out of reach just in case I really needed it. She didn't even want to take it from me in the first place!
I lifted the lid and there it was, nestled among other odds and ends.
Putting on my hearing aid was like sinking down into a warm bubble bath. Throwing on flannel pajamas straight from the dryer when it is snowing outside. Relaxing into a massage chair while having a pedicure. So comforting. I missed it and it felt good to have some familiar sound come back without feeling like I was jeopardizing the future success of the implant.
And as for tacking the television without closed caption ... I feel a Buffy Marathon coming on!
Tuesday, February 14, 2012
Music To My Ears
On my music day -
Winner of the day (because everything that person sang sounded good) - Lenny Kravitz - Stand By My Woman, Let Love Rule and It Ain't Over 'Til It's Over. Yay Lenny!
Song that was most disappointingly hard for me to hear and recognize because I like to loudly sing along to it when I am driving to the mountains - Take Me Home, Country Roads by John Denver
Songs that were surprisingly hard for me to hear and recognize because I thought their sweet, simple melodies would be easier - Sweet Potato Pie by Ray Charles and Just the Way You Are by Billy Joel
Songs that I rather expected to sound like noise, but sounded surprisingly good - You Shook Me All Night Long by AC/DC, Give It Away by the Red Hot Chili Peppers, and Zombie by the Cranberries.
Song that I must concede to my mother probably is about sex (I swore it wasn't when I was in middle school) - Union of the Snake by Duran Duran.
Winner of the day (because everything that person sang sounded good) - Lenny Kravitz - Stand By My Woman, Let Love Rule and It Ain't Over 'Til It's Over. Yay Lenny!
Song that was most disappointingly hard for me to hear and recognize because I like to loudly sing along to it when I am driving to the mountains - Take Me Home, Country Roads by John Denver
Songs that were surprisingly hard for me to hear and recognize because I thought their sweet, simple melodies would be easier - Sweet Potato Pie by Ray Charles and Just the Way You Are by Billy Joel
Songs that I rather expected to sound like noise, but sounded surprisingly good - You Shook Me All Night Long by AC/DC, Give It Away by the Red Hot Chili Peppers, and Zombie by the Cranberries.
Song that I must concede to my mother probably is about sex (I swore it wasn't when I was in middle school) - Union of the Snake by Duran Duran.
Goldilocks Purgatory
Most of you know I took a leave of absence from work to focus on auditory rehabilitation. I wish I could report phenomenal progress, but it remains slow. Still, it is progress!
I really did enjoy a day of music on Sunday. I drove up to my parents and listened to my iPod playlist the whole way. My good auditory vibes lasted until about 1/3 of the way through the Grammys when my brain shut down. Since then, I haven't wanted to wear my CI as it has gone back to feeling like physical pain. I think I really overdid it on Sunday, just like my body gets sore from a CrossFit workout following weeks of inactivity, my brain was sore from the auditory workout!
When I first took leave, I started off listening to an audiobook, while reading along. I still cannot distinguish words without a text in front of me or lip-reading. It often just sounds like nonsense, babble, even beeps. I haven't done as much of that because a professional I am working with said that is a secondary sound source and would be much more difficult. However, she also said to "bathe in sound" so I may go back to it.
I had another mapping with my audiologist. It felt like it went miserably, like I was trapped in some kind of demented Goldilocks world - but in this one, nothing was "just right," not the porridge, not the chair, not the bed, and certainly not the darned CI processor. Every setting felt either too loud or too soft. I think we were both frustrated and it even reached a point where I felt like what I was hearing and what the computer was telling my audiologist I should be hearing were two different things. She had me on the softest setting and it sounded like the loudest setting to me, but I think it was my brain playing tricks on me. When I got out into the real world, it was better.
The best news from the new mapping was that sound wasn't painful anymore. Yesterday and today were the first days sound felt painful again since my new mapping and I think it was because I was fatigued.
When I say painful, I generally mean when I put it on or have it on and sound hits my brain, it feels like an electrical shock. If you are not a Buffy the Vampire Slayer fan, you won't get this, but I told my sister that I felt like Spike with a chip in my brain that caused physical pain at certain triggers, his being violence against humans, mine being sound waves. I felt like clutching my head and going "AARGGGGGHHHH."
Actually, I think I have done that a few times in the last two months.
That was happening ALL of the time before I decided to take leave. Work was miserable because of it. I couldn't put anything into the background and all these sounds were just assaulting me and hurting me and I felt like I was coming apart. I kept getting sick, I felt depressed, everything felt hopeless and I really wanted to just give up.
Since the new mapping and the CI volume has been adjusted to softer levels, this doesn't usually happen anymore. Keep in mind, that I am still far below normal hearing levels. I don't know how you people stand it!! :P
I also met with a teacher of the deaf named Sabrina who is now working with me regularly. She gave me a spreadsheet of auditory milestones at our first meeting just to lay the groundwork, and I remember looking over the list, which has milestones for babies and toddlers, and thinking, "Pfffft, it's not like I am that bad off!"
Then (drumroll) - reality check!
The first meeting with Sabrina was before the next mapping with the audiologist and when I had the next mapping, the audiologist did a sound test on me which I later learned was the Ling 6 sound check. It is 6 sounds - "Ahh," "Eee," "Ooo," "Mmm," Sss," and "Shh." The sounds are articulated and the deaf person is supposed to repeat which sound was said.
I couldn't distinguish one single sound from the others and it was a shock. I felt like I had been slapped and it made me realize, "Wow, my hearing right now really is just like a baby's."
Maybe that can help people understand what I am going through in this process. It helped ME understand what I am going through, at least after I got over the shock of having baby brain!
The audiologist also tried some colors with me but they all sounded like "blue."
Since then I have worked on the Ling 6 sounds and colors and other closed sets of words with my sister, her kids and my mom. When I went for my first official session with Sabrina, I did a little better with the Ling 6 and we discovered that I do have some advantages over a newborn in that I can detect syllables, duration and even some intensity in sounds. I just have trouble distinguishing what the sound is.
My mom has been working with me a few times a day. I'm making progress with the Ling 6. I can almost always differentiate the "Ahh" sound now, and I can usually even tell "Sss" from "Shh." Oddly enough, "Eee," "Ooo," and "Mmm" sound almost identical to me. What's really weird is that if I am looking at the person and can see the mouth movement, my brain seems to separate them into distinct sounds, but if I am not looking, it can't just yet.
We've also added family names because recognition of my name is another activity Sabrina wants me to work on. The names I recognize the best are Natalie and Jennifer.
I have trouble with my own name, Kelly and Kay. Is it something with those K sounds??
With colors, I have trouble with "red," but last night I got them all! My mom was so excited! I think she was more excited than me.
I had a little bit of a breakdown today because I just didn't expect sound to feel painful again after stringing so many good days together. I cried and my mom held me and told me to stop being so hard on myself and to give it time. I may be almost 43, but there is still nothing like being held by my mom.
So that has been my fascinating life with a new CI. It's hard to believe it has only been about 9 weeks since I was "turned on," Well, actually, I was turned on Sunday watching LL Kool J at the Grammys, but I digress... It seriously feels like months and months and that is part of my frustration, I think. Maybe because I have been "trying to hear," for almost 39 years of my life and I really, really want it to happen. Now.
Oh, and a shout-out to my Aunt Joanne. Love you and Uncle Sandy!
Peace.
I really did enjoy a day of music on Sunday. I drove up to my parents and listened to my iPod playlist the whole way. My good auditory vibes lasted until about 1/3 of the way through the Grammys when my brain shut down. Since then, I haven't wanted to wear my CI as it has gone back to feeling like physical pain. I think I really overdid it on Sunday, just like my body gets sore from a CrossFit workout following weeks of inactivity, my brain was sore from the auditory workout!
When I first took leave, I started off listening to an audiobook, while reading along. I still cannot distinguish words without a text in front of me or lip-reading. It often just sounds like nonsense, babble, even beeps. I haven't done as much of that because a professional I am working with said that is a secondary sound source and would be much more difficult. However, she also said to "bathe in sound" so I may go back to it.
I had another mapping with my audiologist. It felt like it went miserably, like I was trapped in some kind of demented Goldilocks world - but in this one, nothing was "just right," not the porridge, not the chair, not the bed, and certainly not the darned CI processor. Every setting felt either too loud or too soft. I think we were both frustrated and it even reached a point where I felt like what I was hearing and what the computer was telling my audiologist I should be hearing were two different things. She had me on the softest setting and it sounded like the loudest setting to me, but I think it was my brain playing tricks on me. When I got out into the real world, it was better.
The best news from the new mapping was that sound wasn't painful anymore. Yesterday and today were the first days sound felt painful again since my new mapping and I think it was because I was fatigued.
When I say painful, I generally mean when I put it on or have it on and sound hits my brain, it feels like an electrical shock. If you are not a Buffy the Vampire Slayer fan, you won't get this, but I told my sister that I felt like Spike with a chip in my brain that caused physical pain at certain triggers, his being violence against humans, mine being sound waves. I felt like clutching my head and going "AARGGGGGHHHH."
Actually, I think I have done that a few times in the last two months.
That was happening ALL of the time before I decided to take leave. Work was miserable because of it. I couldn't put anything into the background and all these sounds were just assaulting me and hurting me and I felt like I was coming apart. I kept getting sick, I felt depressed, everything felt hopeless and I really wanted to just give up.
Since the new mapping and the CI volume has been adjusted to softer levels, this doesn't usually happen anymore. Keep in mind, that I am still far below normal hearing levels. I don't know how you people stand it!! :P
I also met with a teacher of the deaf named Sabrina who is now working with me regularly. She gave me a spreadsheet of auditory milestones at our first meeting just to lay the groundwork, and I remember looking over the list, which has milestones for babies and toddlers, and thinking, "Pfffft, it's not like I am that bad off!"
Then (drumroll) - reality check!
The first meeting with Sabrina was before the next mapping with the audiologist and when I had the next mapping, the audiologist did a sound test on me which I later learned was the Ling 6 sound check. It is 6 sounds - "Ahh," "Eee," "Ooo," "Mmm," Sss," and "Shh." The sounds are articulated and the deaf person is supposed to repeat which sound was said.
I couldn't distinguish one single sound from the others and it was a shock. I felt like I had been slapped and it made me realize, "Wow, my hearing right now really is just like a baby's."
Maybe that can help people understand what I am going through in this process. It helped ME understand what I am going through, at least after I got over the shock of having baby brain!
The audiologist also tried some colors with me but they all sounded like "blue."
Since then I have worked on the Ling 6 sounds and colors and other closed sets of words with my sister, her kids and my mom. When I went for my first official session with Sabrina, I did a little better with the Ling 6 and we discovered that I do have some advantages over a newborn in that I can detect syllables, duration and even some intensity in sounds. I just have trouble distinguishing what the sound is.
My mom has been working with me a few times a day. I'm making progress with the Ling 6. I can almost always differentiate the "Ahh" sound now, and I can usually even tell "Sss" from "Shh." Oddly enough, "Eee," "Ooo," and "Mmm" sound almost identical to me. What's really weird is that if I am looking at the person and can see the mouth movement, my brain seems to separate them into distinct sounds, but if I am not looking, it can't just yet.
We've also added family names because recognition of my name is another activity Sabrina wants me to work on. The names I recognize the best are Natalie and Jennifer.
I have trouble with my own name, Kelly and Kay. Is it something with those K sounds??
With colors, I have trouble with "red," but last night I got them all! My mom was so excited! I think she was more excited than me.
I had a little bit of a breakdown today because I just didn't expect sound to feel painful again after stringing so many good days together. I cried and my mom held me and told me to stop being so hard on myself and to give it time. I may be almost 43, but there is still nothing like being held by my mom.
So that has been my fascinating life with a new CI. It's hard to believe it has only been about 9 weeks since I was "turned on," Well, actually, I was turned on Sunday watching LL Kool J at the Grammys, but I digress... It seriously feels like months and months and that is part of my frustration, I think. Maybe because I have been "trying to hear," for almost 39 years of my life and I really, really want it to happen. Now.
Oh, and a shout-out to my Aunt Joanne. Love you and Uncle Sandy!
Peace.
Sunday, January 8, 2012
Expectations
Been a long time since I blogged. I haven't felt like it, honestly. A friend of mine posted an article yesterday about expectations and it really hit home for me. Not just my own expectations, but those of others. I had so many people so excited about this and so many people convinced that "with my brain" (I heard those three words a lot) it would be a breeze, that no one, including me, really understood how difficult it would be.
Truth? I don't like wearing it. I miss my hearing aid. It gets better for a day or two and then everything sounds painful again. I often cringe when I have to put it on. Sometimes when I wake up in the morning and remember I need to put it on, I feel depressed and defeated.
I look back and I can pick out two moments when I felt like my progress was measurable - Christmas Eve at my brother's when I felt like I was following the conversation better than usual (which could have been because I was trying so hard) and the night at the reindeer in downtown Richmond when we heard a band playing in the street and it actually sounded like music.
Two moments out of 30 days.
Most of the time, I tell people I'm making progress because I know that is what they want to hear.
Am I hearing more? Yes. Am I hearing better? No. Most of the time, everything hits me in a din of unrecognizable sound. My brain, the brain that everyone thought would do so well, doesn't know what to do with it all.
I hear beeps, clatters, whistles, more clatters, and the hums! Who knew so many things hummed??
And good heavens, when I scratch my head, it's crazy loud!
Truth? I don't like wearing it. I miss my hearing aid. It gets better for a day or two and then everything sounds painful again. I often cringe when I have to put it on. Sometimes when I wake up in the morning and remember I need to put it on, I feel depressed and defeated.
I look back and I can pick out two moments when I felt like my progress was measurable - Christmas Eve at my brother's when I felt like I was following the conversation better than usual (which could have been because I was trying so hard) and the night at the reindeer in downtown Richmond when we heard a band playing in the street and it actually sounded like music.
Two moments out of 30 days.
Most of the time, I tell people I'm making progress because I know that is what they want to hear.
Am I hearing more? Yes. Am I hearing better? No. Most of the time, everything hits me in a din of unrecognizable sound. My brain, the brain that everyone thought would do so well, doesn't know what to do with it all.
I hear beeps, clatters, whistles, more clatters, and the hums! Who knew so many things hummed??
And good heavens, when I scratch my head, it's crazy loud!
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