My Journey to Sound

My Journey to Sound

Tomorrow is the big day. Tomorrow I become the Bionic woman, I join the CIborg collective, I get my first (hopefully not the only) cochlear implant. I won’t lie; I’m as nervous as H – E – double hockey sticks. I don’t like the idea of surgery to begin with, but the thought of having wires installed in my head is, frankly, kind of creepy. That being said, the chance to be able to hear again is a huge driving force for me. 

So, what is a cochlear implant, you ask? To put it simply, it’s like prosthetic ears. It’s rather quite amazing in actuality. A cochlear implant is the only technology in existence at the moment that can functionally restore one of the 5 senses. What I find remarkable, is that this technology has been around since the 80’s! In fact, my cousin was one of the first to ever receive a CI. Back then, he had to wear the processor on his belt or in his pocket, like a Walkman (remember those?) and he had a wire connecting the processor to his headpiece. Now, they are so compact, most people won’t notice I’m wearing it. Oh, and by the way – I’m the last in my family to get a CI –  two of my brothers have them (one is bimodal and one is bilateral) and 3 of my cousins are part of the CIBorg collective. I guess you could say it’s hereditary and my family has blazed the trail well for me to follow suit. I even chose the same brand of implant – Advanced Bionics

The way it works is a microphone captures the sound and transmits it to the external processor (looks like a big hearing aid) which converts the sound into digitally coded signals. The headpiece (small magnetized external component) which is magnetically aligned over the implant, receives the signals from the processor and then rapidly sends the signals through the skin as radio waves to the implant. The implant receives the signals and interprets them and then sends a specialized pattern of electrical currents down through the electrical array into the cochlea where the implant emits it as electrical stimulation pulses to the nerve receptors (similar to the work of the tiny hairs in a person with normal hearing) in the cochlea. 

I’ve been profoundly deaf for almost 4 months now. Totally deaf in my right ear with 110db hearing in my left, and let me tell you, that amount of hearing doesn’t do much. Without a hearing aid in my left ear, I hear nothing. With my hearing aid, I can hear some sounds and speech is likened to an episode of Charlie Brown when the teacher is talking. Prior to losing all my hearing in my right ear, I was classed as severe to profoundly deaf. I always struggled, but managed to get by. While I had to rely heavily on speech-reading (aka lip reading), I could still enjoy music and obviously hear things happening around me. Life is so much more different without sound.

It’s important to note that a cochlear implant does not cure deafness. I will always be deaf but the cochlear implant will allow me to hear again, as long as I wear the external processor. I may never gain the fully functional hearing of someone without hearing loss, but with a lot of practice and training, I hope to be able to carry on a conversation without lip reading, enjoy a movie without captions, talk on the phone, and maybe even enjoy music again! That hope is what inspires me to undergo the surgery. 

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What to Expect When You’re Expecting…

What to Expect When You’re Expecting…

Today, I had a lovely meeting with Kimmi (I call her my “trainer” but she’s the Cochlear Implant Consumer Specialist for Canada) and Paul (my first true CI Candidate that I am mentoring) and his wife Jan. Paul will be having his surgery next month and so we spent the visit helping familiarize them with the technology that he will be receiving. It occurred to me that perhaps I should write an overview of what to expect when your expecting… CI surgery, that is! 😉

So, let’s start off with some dos & don’ts.

Do

  • Drink lots of water in the days leading up to your surgery date and immediately following
  • Set up a “recovery” station before surgery so it’s ready when you get home (see below for my RS must haves)
  • Try to be plenty rested before surgery (this is tough and may be beyond your control)
  • Up your fiber intake (anesthesia & pain pills can bind you up tighter than Alcatraz).
  • Familiarize yourself with your surgical follow-up care guidelines.
  • Start a hearing journal – prior to surgery you can list questions you have, concerns, or simply general feelings. After surgery, it’s good to keep track of any issues, symptoms, and again, questions. You can also track your pain pills schedule – it’s kind of tough to remember what time you took your last pill if your head is in a fog.
  • Ask questions! Your audi, surgeon, mentor (if you have one) will all be happy to answer questions for you.
  • Plan on taking at least a couple days off work if possible. My first surgery I needed almost 2 weeks, but my second only about a week. But each of us is different.

Don’t

  • DON’T Be nervous – you’re in good hands, everything will be good!
  • DON’T Blow your nose after surgery and try your best not to sneeze (if you do sneeze, be sure to keep your mouth open and don’t stifle it)
  • DON’T Expect to hear out of your ear after surgery. Even if you have residual going into the surgery, there will be swelling and fluid so you probably won’t know if you kept your residual for a month or so after surgery.
  • DON’T Obsess – over anything. Most things you will experience will be in the normal range but it’s so easy to work yourself up over little things that you are sure mean you’re going to die (ok, slight exaggeration)
  • DON’T – Turn to the “experts” on Facebook/social media when you have a concern. While you can get some very good info from the keyboard warriors, you can also get some downright bad advice. Instead, call your doctor!
  • DON’T Freak out if your taste is messed up or you hear crazy sounds in your head or implanted ear. Both are common side effects and will rectify themselves in time.
  • It’s also a good idea to refrain from standing on your head, spinning around in circles, riding roller coasters, joining the olympics, or taking a parkour class – at least for a month after surgery.

So about that recovery station I mentioned. Plan on spending at least 2-3 days here; maybe more! You most likely won’t be able to sleep comfortably laying down, so a recliner will become your new best friend. If you don’t have a recliner, then gather up TONS of pillows on your bed or couch. Seriously, a mountain of pillows just might be enough. Also invest in a neck pillow – it can make a big difference in getting comfy. Try to avoid sleeping on your implanted side – your pillow mountain is good for pinning you in place.

Stock your station with your favorite snacks (highly recommend soft foods – pudding, apple sauce, jello -my fav-, cheese, etc). Hard snacks, like crackers, may not be well received. I was so disappointed when I cracked open my box of wheat thins after my first surgery only to find out that the crunch was so painful that I couldn’t eat them. I wasn’t able to open my mouth very far either and chewing anything hard really hurt. So plan on soups and mashed potatoes, Mac & cheese, etc. Get lots of bottles of water and juice as it’s very important to stay hydrated. Warm beverages or hard candies to suck on may help soothe your throat, in case of irritation (normal from having a tube down your throat).

Have your favorite things to pass the time within arms reach. For me, it was reading (Kindle), NetFlix (Kindle), and Facebook (phone). Plus I kept the TV remotes close at hand. If you’re into the electronic devices, like me, you’ll also want to have your chargers & a power cord set up and within easy reach.

A few other items to have near – a garbage can; box of tissues; paper towel roll; pain relievers (both OTC & prescription if you can pick your prescription up before surgery); a phone to text or contact someone if needed; a white board, boogie board or notepad to assist in communicating with those around you; extra bandages, wound care, etc to look after your incision as suggested by your doctor; hearing aid batteries, etc if you wear a HA in your nonimplanted ear; and possibly a bucket in case you have nausea (thankfully, I didn’t!).

Most likely, you’ll have your pre-op appointment a couple of days before surgery. This is a great time to ask questions. They’ll advise you about your requirements before surgery. For me, it was no eating after midnight (did they think I was a gremlin??) and only clear fluids to drink; plus I was to drink 2 glasses about 2 hours before surgery.

Be sure to take a comfy button up shirt (or a shirt with a very large neck opening) with you to the hospital as you’ll have a big bandage around your head. Here, at the Ottawa clinic, it’s an outpatient surgery, but they do keep you overnight and kick you out first thing in the morning. Make sure you arrange for a lift home – you will NOT be allowed to drive yourself! I also had a pillow and blanket in the car to keep me comfy for the ride home.

As your anesthetic wears off, gauge your pain threshold and take your pain pills as prescribed. If you find you’re in quite a bit of pain, keep up on the meds the first couple of days. Ironically, I found days 3-5 were the WORST! Once I made it to day 6, things really started to turn around. If you feel you can tolerate the pain, then try just using Tylenol. I discovered the second surgery that my pain was far less than the first surgery so I didn’t even need the prescription pain killers. I think that’s part of the reason why my recovery was so much better the second time.

Your aftercare instructions are going to vary from surgeon to surgeon and how the surgery was performed so this is why you need to familiarize yourself with the instructions and stick with what your doctor says. But generally speaking, you most likely won’t be able to get the incision wet for a couple days, up to 2 weeks; so sponge baths may become your new best friend. If you have longer hair, it’s a good call just to tie it up in a pony tail. You need to keep the incision clean as it heals so again, follow your doc’s instructions. Some minor leaking from the ear or incision is common – but if anything concerns you, call your surgeon. You may also have a stiff/sore neck and jaw; headache/ear ache; sore throat; itchy incision site – all normal stuff.

Rest up as much as you need those first few days. I took lots of naps. If you have someone around to lend a hand, let them pamper you and bring you what you need. Take the time to just relax and heal. It’ll go by pretty fast and then before you know it, you’ll be ready for A-Day (activation)! The bottom line is to listen to your body. If you don’t feel like you can do something, don’t push yourself. We’re all going to have differences in our experience so try not to compare yours with anyone else. We do all have to go through this period of discomfort to get to the prize of better hearing, but it’s a sacrifice that is so worth it!

Take the Red Pill

Take the Red Pill

The other day my son and I watched the original Matrix movie. I’ve seen it several times and it’s one of my favorites. The scene where Morpheus offers Neo the red or the blue pill really struck a chord with me this time though. It was the first time I had seen it since receiving my cochlear implants.

If you haven’t seen the movie, here’s a quick run-down of the scene. Neo is given the choice of taking the red pill and waking up to the real truth and reality of the world he exists in and embark on an eye-opening, life-altering, course. Or, he could choose the blue pill and go back to the world he knows and is familiar to him, but is shrouded in a false reality; a world that he never felt he belonged in.

That scene reminded me so much of the journey to regain my hearing with cochlear implants. When I lost my hearing, I found myself in a world that didn’t seem right. I didn’t feel that I truly fit in it anymore. I knew something was missing, beyond the obvious lack of sound. There was a sliver in my mind, nagging at me, telling me that there was more to the world, more to my life that I was missing.

For me, the “red pill” would take me down the rabbit hole of cochlear implant surgery. This offered the promise of something unknown. The uncertainty of what it would bring, but the hope that it would be better than what I had. My blue pill was to do nothing. To continue to wake up every morning to the world of silence, a world I knew I didn’t belong in.

I chose the red pill. The unknown. The uncertainty. The hope of something better. Like Neo, the journey began with a a bit of discomfort, some disorientation, and a fair amount of training to reach my full potential (and I’m still working towards that!). However, it was the awakening to the new reality of the world around me, filled with sound and regaining a connection to the people in my life that made it all worth it.

My matrix of silence had kept me apart from that. It limited what I felt I could do, it suppressed my potential. I was its prisoner, held captive and powerless within it and I was grasping for anything to get me out. I didn’t choose to be in the Matrix, it was forced upon me, against my will. For me, the blue pill was not an option, not even a consideration. I knew I needed out.

I grabbed that red pill, and yes, there was a tiny hesitation for me too – that brief moment before taking the plunge into the unknown. But then I jumped in with both feet and suddenly the world around me began to transform. Even before I was activated, simply clinging to the hope of shattering my silent world gave me purpose and changed my attitude. Now, to finally be immersed in the world of sound, I feel right again. A part of my world, and not just going through the motions. The change in me has been staggering – from being completely isolated to being outgoing, engaging, involved. Filled with the joy of life and so much happier.

Interestingly, also like Neo, I can still enter back in to the Matrix by removing my processors. It’s a daily reminder of how much better and easier, my life is since I took the red pill.

Are you like me; like Neo? Do you feel that there is more to this life than what you see? Are you struggling in a world of silence and want a way out? Then take the red pill and see how deep the rabbit hole goes.

Mission… Totally Possible!

Mission… Totally Possible!

When I think back and remember what things sounded like when I was first activated, I am simply amazed at the difference between then and now. The brain is really an extraordinary organ!

One of the most common questions I’ve seen asked on the social media groups is “how does a cochlear implant sound?” and “does it ever sound natural again?” As I’ve said before, I can only attest to my own experiences here, but I can say with relative confidence that YES! it does sound normal. Not necessarily at first, but in time.

Some have asked whether it really sounds normal or do we simply get used to things sounding mechanical. Well, I guess I don’t have a definitive answer there, except that; it DOES sound normal now, so does it matter if it’s my brain learning to interpret those electrical impulses as it would with normal hearing or I’m simply accustomed to the way it sounds? Personally, I think that’s a moot point since things sound amazing to me now.

I have to constantly remind myself (and often those around me!) that I am DEAF! Zero hearing. It’s so easy for me to go about my day, answering phones, talking to guests, listening to music, etc. it’s really become a part of me. Every once in a while I do have a little panic attack when I think of what my life would be like without my CIs. It’s not something I want to dwell on and I hope I’m blessed enough to never have to go without both of my ears again. It’s not a pleasant experience.

All this being said, I hope that if you’ve read any of my other posts, that you realize that having a CI is not a quick fix nor is it a cure for deafness. Without my processors, I am very much deaf. It did take a lot of work, training, practice, and patience to get my level of hearing where it is today. Hours each day were spent working through training apps and exposing myself to sound and even now, I still spend time practicing – especially with my new ear. If you haven’t read my previous post “Learning to Listen” You can take a gander at what went into my training regime.

I’m of the mindset that anyone can get decent results with their CI provided they are willing to work at it and give it time. There are the rare exceptions of course, but there are usually underlying complications in those instances. This is why I always encourage people to do active rehab every day – especially if they are struggling with speech comprehension. In my own case I see a marked improvement when I actively train, whether it is speech discrimination, understanding in noise, or music appreciation.

While my mission with this blog began as simply a way to share my story, it has slowly morphed into an outreach for those looking to Cochlear Implants as a solution for their hearing loss. A few weeks back I decided to take this “mission” one step further. I began creating a series of rehab videos to help with the process of learning to listen again. I now have a YouTube channel with a series of short training videos from environmental sounds, words & sentences in both quiet & varying levels of noise, and even pitch perception and music appreciation. They are rudimentary and are very much a work in progress, but I do hope that as I continue adding content that the value will grow for CI users and be another tool they can add to the repertoire of resources for rehab. It’s something that I am very much enjoying and if it helps just one or two people improve their listening, then I will be ecstatic!

Here I am working on a video – my Nadia’s make it possible to wear headphones normally & comfortably!

You can check out my YouTube channel here.

And here’s a recent video I posted – “inspirational quotes” – you can get motivated while you improve your hearing! I know, brilliant, right?!

If you find that video is too easy, there are other videos with varying levels of background noise that pose a greater challenge. If you care to check out my channel, I would really love it if you would subscribe. YouTube has special features that only get unlocked when you have a certain number of subscribers – like the ability to have a custom URL for your channel. I’d love to get to that point, but still need a LOT more subscribers. Also, if you like the videos, please like & comment on them – this feedback is crucial for me to know if I should keep investing my time to make more videos and where I can make improvements. Suggestions are greatly appreciated too! As long as someone out there is using them, I’ll keep at it.

The bottom line is that my ultimate goal is to help you reach your maximum potential in listening. It starts with taking that first step towards a cochlear implant and ends… well, I view this as a lifelong journey so if you care to travel this road with me, perhaps we’ll be traveling companions for life.

The Choice is Yours

The Choice is Yours

This post is directed more towards those who are currently exploring their options and looking in to getting a CI but hopefully those curious about the process will enjoy the read as well.

One thing that most people don’t realize when starting down the road to Cochlear Implants is that most often, the candidate gets to choose which brand of implant they get. Why does this matter? Well, to start with, the implants are not universal; they are not cross compatible with different brands of processors. While each brand has very good reliability & they will all give the recipient access to sound and speech comprehension, they are surprisingly vastly different in their designs and features.

For some candidates, like me, the ability to choose my own processor was a blessing. I’m a gadget freak and tend to be techie by nature so being able to research the different brands to make an educated choice was right up my alley. For others though, this is a highly daunting and scary process with complicated and confusing information. Because the implant cannot be changed without surgery and the implants should, in most cases, last a lifetime or at least 20-30 years; it’s not a decision to be taken lightly and certainly warrants a bit of research. A great place to start is Cochlear Implant Help there’s a great comparison chart and lots of good information.

I will be the first to tell you that there is no wrong choice. This process is very similar with choosing a cell phone brand, or car brand. Every brand will get the job done and perform similarly, but each with their strengths and features. We choose our brand by the one that “calls” to us the most. It’s important to be happy with the choice you make, whatever that may be.

I chose Advanced Bionics for several reasons and I will break them down for you here. Because I don’t have experience with the other brands, I cannot elaborate on any of the others, but I do encourage you to research each brand so you can be comfortable with your choice.

As I mentioned, the implant you choose is with you for life. Processors (the part you wear on the outside) change and improve every couple of years so while it is a piece of the puzzle, I feel it bears less weight than the implant. This was where I centered my research focus. I wanted the best chance of hearing as close to “normal” as I could and wanted to be able to love music again.

When I compared the 3 brands, I learned that AB has the highest max stimulation rate (how fast the electrodes can stimulate the nerves), has the ability to fire multiple electrodes at the same time (each electrode has its own power source), has the fastest data transfer (how quickly it gets the info from the processor to the implant), the widest Input Dynamic Range (the spectrum of the softest to the loudest sounds that one can hear at any given time), and utilizes current steering which enables points in between electrodes to be stimulated in order to provide better pitch perception. This led me to believe that I would have the best chance of loving music again with AB (which has certainly proven true).

AB also has the most listening strategies available to really tailor the way the CI works for each individual, giving more opportunities to find that perfect sound for each person. Our ears are as unique as we are as individuals so what works well for me, may not work well for you. They definitely do not take a cookie cutter approach to hearing and really think outside the box for us.

The other factors that I looked for in my brand choice was the ability to connect to my phone and tablet and power choices. I knew I did NOT want to rely on disposable batteries. Aesthetics, while not a high priority on my list, still played a bit of a role in my choice. I do want my processors to look cool.

AB covered every one of those desires. With the Compilot, I can connect wirelessly to my iPhone, Kindle Fire, TV, laptop, computer, and anything with a headphone jack that I want to plug into like the assisted listening devices at theatres.

The Naida processors utilize rechargeable batteries – and they actually have several power options available. My 170 minis, which are small and lightweight, last me all day without issue. I just pop ’em on the charger every night and they’re ready to go in the morning. I have larger batteries too that will last about 26-27 hours, and even have an optional zinc air disposable adapter and a AAA PowerPak that can be used in situations where I can’t recharge easily (like camping or emergencies or a zombie apocalypse – have I mentioned that I don’t EVER want to be without my AB ears?). Oh – and they have the only truly waterproof processor (Neptune) and waterproof mic (AquaMic) plus a great, rugged waterproof case option for the Naida (AquaCase) so I can hear in the water!

Aesthetically, I think the Nadia’s are pretty slick! I couldn’t believe the color options that were available. It actually was tough to choose, but in the end I went with Petrol – it’s kind of a deep, navy/charcoal/black color. I found it to have a real depth to it that sucked me in. 😍 I also love the shape of the headpiece. I know, they’re all round, but the AB’s have a smooth, sleek contour that I found attractive.

Some other features that I love about the Naida: T-mic!! This feature is totally unique to AB and I’ve talked about it before, but it’s worth mentioning again. The T-mic positions a microphone right at the opening of the ear canal. Why does this matter? Well, have you ever wondered why the ear is shaped the way it is? It’s designed to capture, filter, and channel sound waves into the ear canal to facilitate hearing. This is called the Pinna effect. AB’s T-mic takes advantage of this natural filtering effect and improves listening in noisy settings without having to change programs. It also permits easy usage of telephone and headphones without need for streaming or alternative devices.

The Naida processors also have an on the processor volume and program button. This was important to me as I knew I didn’t want to carry a remote around all the time but also wanted the option to control my own programs & volume easily, wherever I may be.

Finally, I knew AB offered the best bimodal and bilateral features. At the time of my first implant, I didn’t think I would ever have the opportunity to go bilateral, but I was still utilizing a HA in my other ear (even though it didn’t provide much benefit). I wanted the chance for the two ears to work TOGETHER. I was able to try out the Phonak Naida Link HA with my right CI and loved the features it offered. When my left ear went deaf shortly after, I was provided the opportunity to try their Phonak Naida CROS. Now that I’m bilateral, I’m truly experiencing just how well AB enables ears to work together – there is an option for EVERY hearing configuration. No other CI brand offers Binaural VoiceStream Technology – an instant connection between the two ears. It even provides the ability to send sound from one ear to the other in real time. I attribute my ability to perform in noise so well to this feature – the UltraZoom program is amazing.

I know this is probably coming across as one big sales pitch for Advanced Bionics, but that is not my intent. I simply wanted to walk you through the reasonings that helped me choose AB as my brand for life. As one person mentioned on the FB CI group, when you choose your brand, you are marrying it. Its a prudent move to be sure you want to spend the rest of your life with that brand.

It did help me to know people that had selected AB and to see how well they do with their implants. So my advice to you is get out there, talk to people with the different brands, ask to handle the processors, talk to the sales reps from each company, decide what features are important to you and which brands best deliver on those features, and then decide with confidence. After all, the choice is yours to make.

Happy Hearversary to Me!

Happy Hearversary to Me!

One year ago today, my whole world changed. I went from my world of isolating silence to a world of sound. Even though my journey to sound started well before A-Day (activation or “switch on” day), November 1 is the day that I will always celebrate as my “hearversary”. 

To reminisce a bit, I went back and read through my earliest blog entries. It’s funny how time dulls your memories and selectively chooses what it wants to remember. I’m so glad I started this blog, because it reminded me about how nervous I was at the beginning, how uncertain I was of what I would be able to hear. It also gave a tiny glimpse of the utter desperation I was going through, suffering in my world of silence. But it also showed the glimmer of hope that I held onto. 

The final paragraph of my very first post truly summed up all my hopes and fears in just a few sentences: 

It’s important to note that a cochlear implant does not cure deafness. I will always be deaf but the cochlear implant will allow me to hear again, as long as I wear the external processor. I may never gain the fully functional hearing of someone without hearing loss, but with a lot of practice and training, I hope to be able to carry on a conversation without lip reading, enjoy a movie without captions, talk on the phone, and maybe even enjoy music again! That hope is what inspires me to undergo the surgery. 

Looking back at that, I realize just how blessed I have been in this journey of mine. Every one of the hopes that I held have been fulfilled beyond my wildest dreams!

1. To be able to carry on a conversation without lipreading. Done! I was able to do this in controlled settings early on but it has become even easier now. To be clear, it is not perfect all the time and there are situations & certain people that I just can’t comprehend without the aid of my visual “ears”. 

2. Enjoy a movie without captions. Yup! This one too. I’ve now been to two movies at the theatre where I didn’t use a caption device. I did use the assistive listening device to stream the sound via my compilot, but I had no issue with not having the captions. Both movies were cartoons too! I just have to say, lipreading cartoons… Yeah, it doesn’t work! So I really did use my CI ears to keep up with the movies. Pretty cool! I still tend to watch captions at home on Netflix shows and other programs that have them, but mostly due to laziness, not necessity. I still find it easier to have the captions there simply because it’s a habit. My brain still really likes to listen with my eyes. It’s slowly coming around though. 

3. Talk on the phone. Oh yes! I had tried the phone with my audi the day after activation and did remarkably well. Despite that, I still did not gain the confidence to try any unknown caller for almost 4 months. Even then, I wanted to have my hubby close in case I couldn’t hamdle it – he was my safety net! One thing that I didn’t envision though – being able to talk on the phone with BOTH ears!! I’m serious. My whole life I have never used my left ear to talk on the phone because it was impossible. Well, not any more!! Just the other day I decided to try talking to my hubby using my left ear. I did use my ZoomControl feature to stream sound to my right ear as well, but I had a whole conversation without a hitch. I have to say, it was very awkward holding the phone with my left hand! 

So cool to know that now I can be like a hearing person and swap back and forth between ears depending on how I feel. I always looked on that with envy – especially for those hour long conversations when your arm and ear are so tired but you don’t want to stop talking… Now to go have one of those conversations!!

4. Enjoy music again. Amazingly, yes! This was my biggest fear – never being able to enjoy music again – because so many people with CIs said that music sounds awful to them so they stopped listening. If you’ve read my other posts, you’d know how big of a deal this is for me. I NEED music in my life. At first, it did sound awful and I could only make out the beat among a jumble of sounds. Cacophony would be a better word. But I was determined, I persisted, and I succeeded! It took weeks of work to get to the point where I enjoyed it, even though it was still missing a bit of the richness & depth that I once knew; but at least I had music again! However, with the introduction of my second ear, I gained a depth I never expected. Now, music is always in my head! I’m in love again!

For all of this to happen in just 1 short year is remarkable. I had my 1 year follow up with my audi today and was able to put my ear (and ears) to the test. Most people with hearing loss HATE the sound booth because it’s a reminder of what they are missing. For me, I was so exited to go in for validation of what I am hearing!

It started with testing my sound field (like a beep test). Since the appointment was for my right ear, I had to take off my left CI. Of course, my tinnitus spiked which made it really difficult to determine if I was hearing the tones (more like a CHHHHH radio static than an actual tone) or my jet engines. I didn’t think I did very well on that one, but turns out my sound field is in the “normal” range of 10-20 dB!

Then we went into single words at a low volume. Here I thought I did pretty well, but it was kind of tough. I wanted my other processor! Then there was another round of words with the volume higher. I felt I did much better on that one. Turns out I did ok – I scored 62% at the lower volume and 78% at the higher volume. I will be honest – I did expect to do better than that and I felt like I understood better. Especially because I scored lower than I did at 6 mo. But I reminded myself that I’ve been using my 2 ears together for a few months now so my right ear may have gotten lazy. Plus we turned the levels down on my right ear after my left was activated because it was too loud with the two together. 

Then we went into sentences. This is probably the most realistic of the testing in that, the world tends to move in complete thoughts, not random words. That said, the AZ Bio test has weird sentences! Some stuff makes no sense at all so you end up questioning whether you actually heard correctly. I scored 99% on that one! Then she added noise and I went through another round and I scored 90%!! 90% in noise is REMARKABLE! And that was without my noise program (she wouldn’t let me change, lol!). 

Then she offered to let me take a break or we could carry on and test bilaterally. I voted to carry on. So we kind of worked backwards and tested sentences & then words. 

It was an interesting experience and in hindsight, I should have taken that break. I think my left ear needed a warm up because I completely tanked on the first 3 sentences. I mean TANKED! I had no clue what was said. But then, like priming an engine, it revved up and did great. So it certainly skewed my score as I got 94% in quiet and 84% in noise. It was interesting to see that bilaterally I did not score as well but when I figure that my left ear probably doesn’t hear remotely as well as my right yet (seeing as it’s only been less than 3 months) it makes sense. I did so much better on the single words at the quieter level and scored 86%.

My testing scores comparing 6 months and 1 year

All-in-all, it was a good day. Even though I didn’t hit the golden 100% – that 99% is pretty darn close! I never would have imagined a year ago that I would be hearing this well now. What an amazing journey and a tremendous blessing this has been. 

Sweet Nothings…

Sweet Nothings…

Living with hearing loss forces you to do things differently – especially when it comes to communication. Because we rely on our vision to assist our ears, communication becomes an immersive activity. It’s much more difficult to multitask when having a conversation. It requires absolute focus and attention to the act of conversing. Lips must be read, expressions and body language accounted for and extreme focus on the context must be maintained.

Not only does it impact the one with hearing loss, but also those they share their lives with. When you grow up around hearing loss, proper communication etiquette is ingrained in every fiber of your being. Get their attention first, face them directly, look them in the eyes, speak clearly, don’t mumble, don’t pace or move around too much, don’t speak to quickly, be prepared to repeat yourself. Wait for acknowledgement that the message was received.

I grew up learning and so have my kids. My daughter is amazing at following these “rules” and has always been the easiest for me to communicate with. She is probably one of the few that I can converse with, completely deaf, without too much struggle. My son is more difficult, as he paces when he talks and tends to speak quite rapidly but after I lost all my hearing, he got much better at getting my attention before speaking to me and  ensuring I understood him. Even though I think I’m the first hard of hearing person my husband had ever met, he is proof that you CAN teach an old dog new tricks and learned early on not to bother talking to me when I couldn’t see him, not to whisper to me, etc. but he does mumble and that’s something so ingrained, I’m not sure I can train that out of him. 😉

All this training is important because without my processors, I’m still very much deaf. So it’s great that not only do I have the skills to understand them, but they have the skills to make it a bit easier for me. That being said, now that I can hear so well, I don’t NEED those extra concessions all the time. In fact, I rarely need them.

It’s been such a 180 from being completely deaf to having almost normal hearing. I don’t need to be tapped on the shoulder to get my attention. I don’t have to stop what I’m doing to have a conversation, I don’t have to trek into the room where my kid is hollering to me to hear what they’re hollering about. I can hear it all with such amazing clarity.

It wasn’t instantaneous. Old habits die hard; so even when I was hearing and understanding with clarity, I would still find myself asking people to repeat themselves if I wasn’t looking at them. It didn’t take long for me to realize that I was understanding, but my brain seemed to be lagging behind. It was so used to listening with my eyes, that it took longer to register that I did hear with my ears! So I started to pause before saying “what” in order to retrain my brain to use my ears instead of my eyes. It slowly came around to where I finally feel my brain & ears are working well together. Just tonight I was walking down our dark hallway and having a conversation with my hubby who was walking a few paces behind me. I didn’t miss a word! Amazing!

The funny thing is, now I find myself getting irritated when my family follows their “deaf communication” training. My kids will say “mom!” and I’ll say “what?” (While still doing whatever I was doing) and they wait… and wait… until I finally turn around to face them and say “WHAT?!” I then proceed to remind them that I can indeed hear them just fine without looking at them. Or someone will say something and I give a little nod to acknowledge that I understood, but they proceed to wait for me to turn and verbally reiterate that I got what they said. I guess I’ve trained them too well!

As I said, the way we communicate gets so ingrained that you stop doing things that normal hearing people do.  So for instance whispering a secret – the first few years we were married, my hubby would always try to whisper to me – which of course never worked. So he learned to just mouth the words and I’d read his lips. Well, the other day, he came up behind me and whispered “I love you” in my ear and I heard it! This is the beginning of a new chapter in my journey, I think I’m going to enjoy having “sweet nothings” whispered in my ear. 💕

Tools of the trade

Tools of the trade

When I got my last set of hearing aids, some 8 years ago, I was thrilled to discover that they now had Bluetooth enabled streamers which would allow my phone or other Bluetooth enabled devices to send sound direct to my hearing aids. I thought that was the coolest thing. It almost made dealing with hearing loss better than normal hearing. Ok, not really, but it certainly was a nice perk! Not only was it incredibly cool, it was super effective. The clarity the streamer provided made talking on the phone easier (the sound went to BOTH ears) and music or TV shows were great sounding too without all the extra ambient noise. 

Well, a lot has changed in those 8 years and there are even more tools available to help people like me hear our best. With my Advanced Bionics Cochlear Implants I have some amazing tools at my fingertips! My personal favorite is the ComPilot – this is very similar to the streamer I had with my hearing aids. It connects me wirelessly to my iPhone, Kindle Fire, & laptop.  With the TVLink, I can stream the sound from my TV through my ComPilot for crystal clear stereo sound. It also has a remote microphone that I can use if there is a speaker at a distance, like in church or at seminars. The ComPilot has an auxiliary port too, so I can connect to anything via a auxiliary patch cable – this is extremely handy at movie theatres or places that have assisted listening devices where they have a receiver box with headphones. I just unplug their headphones and plug in direct to my ComPilot with my patch cable. Pretty slick, eh?

My ComPilot plugged into the assisted listening device at the theatre.

There are other tools that are available to me as well; the Roger System (similar to the compilot, but with a slightly different approach), DECT Phone (a landline phone that streams directly to the processors), EasyCall (attaches to any cell phone and streams calls to both processors), and the AB MyPilot Remote (allows the remote changing of programs, volume, & sensitivity). I don’t use any of these tools though. Other brands of CIs offer similar options too and the latest processors have just introduced direct connection with iPhones. It still has its drawbacks, but it’s neat to see the progression of technology throughout the years. 

These tools exist to give us a leg up and help us hear our very best and maybe make our lives a bit easier along the way. Early in the process, these were invaluable to me, especially with my auditory training. However, I think the holy grail of cochlear implants is to hear well enough to not need these tools. Well, guess what!? I’ve noticed recently that I have been relying on this stuff less and less. 

I do love to stream music or TV straight to my processors without the need for headphones and no one is the wiser; but realizing that I no longer NEED to stream the TV in order to understand without captions is mind boggling! I can’t really say that this was a goal I was actively striving for either, it just kind of snuck up on me. I would find myself watching a program and not struggling to hear so I didn’t bother turning on my compilot. A while back, I stopped giving my remote mic to speakers because I did ok without. Now I only use my compilot for phone calls when I’m driving in the car since it makes a great hands-free device. It’s been a remarkable progression!

These tools were integral to my training and early listening and are still incredibly handy to have. All this said, I do love my gadgets & tools that help me hear in cool and innovative ways, but I love the fact that I no longer NEED them even more!