Let there be sound!

Let there be sound!

I am officially a bilateral listener! While my activation was not quite as stellar as my first round, it was still quite good. Since I never got into the nitty gritty of activation day here on my lovely blog, I figured now is a good time while everything is fresh in my mind. 

My 2 “ears”. Not exactly symmetrical, but pretty close. Excuse my frizzy hair.

My appointment started with Sylvie (my amazing audiologist) showing me my new processor. Since this is my second one, she didn’t have to spend much time there. Then she checked my incision and I asked her to peek in my ears as my right ear had a perforation since the previous surgery. Her scope couldn’t see the area with the perforation though, so I’ll just have to be prudent and careful to keep water out just in case. Next she checked the magnet strength on the headpiece to make sure it was strong enough. Much better this time as I only needed 4 magnets – for my right ear, I had so much swelling still at activation that I needed 6 (now I only need 3). 
Then it’s time to get hooked up. My processor gets connected to the computer by a special USB cable and then I put it on like normal. You would think with all the practice I’ve had with putting on my right, that my left would be a breeze… Nope, I fumbled with it almost as much as the first time I put on my right one. 
The software then runs an impedance test on my electrodes to make sure they’re all functioning properly. Mine showed all but 2 were fine so Sylvie had to turn off electrodes 6 and 9, I believe. I’m not exactly certain why the two wouldn’t work or whether it is a short term issue or permanent, but I’m sure I’ll find out eventually. The good news is, having a couple electrodes turned off is not a horrible thing. It’s not like I’m missing out certain frequencies, apparently the sound spectrum just shifts to accommodate the missing electrodes. My brother has 4 electrodes turned off due to them causing facial twitches and he hears really well, so I’m sure I’ll be fine. 
Back to the activation process. So after the settings were adjusted to match my right ear (programming wise – the volume was turned all the way down), she had me take off my right processor so I would only be able to hear with my left ear. Gradually, she started increasing the sound on my left. She had given me a numbered chart laid out kind of like a thermometer with numbers from 0 at the bottom to 10 at the top. This is the sound level “comfort” chart ranging from 0 (off) to 10 (extremely loud). My job during this gradual increase in volume was to rate the sounds according to what I was hearing to find my most comfortable level (6). She proceeded to talk to me as she raised the volume. 
At first there was nothing… Just my roaring tinnitus. Then I heard some very faint tones, kind of like the beep test in the sound booth. It was strange to see the tones tied to her speech. As the volume continued to increase, I started to hear a very shrill whistle/squeal, just like the feedback I used to get from my old hearing aids. But I still wasn’t getting anything that sounded like words. 
So we kept moving the volume up and then it happened. I heard words! They were so faint under the squawking sounds, but they were there and it wasn’t as mechanical sounding as my first activation. Sylvie brought the level up a bit more and we all talked a bit to give my brain some time to adjust. The environmental sounds were still squeaks and beeps and there seemed to be a lot of static, for lack of a better description, that overlaid the speech. The amazing thing was that I could differentiate Sylvie’s voice from my hubby’s voice. 
After a bit, I asked if Sylvie could raise it up a bit more and I felt I gained a bit more clarity and while the voices still sounded quiet, the other sounds were pretty loud so I didn’t want to go to far and go crazy because it was too loud to wear. Then came my “test” time. We started with simple sounds: “ah”, “oo”, “ee”, “sh”, “ss”, “mm”. Sylvie then covered her mouth and proceeded to make the various sounds and I had to point to the sound I thought she was making. It was HARD! I still did pretty good though and got most of them right. Then we moved on to colors. She wrote a bunch of colors on a sheet and said them (with her mouth covered) and I had to point to the ones she said. I did really good on this, except blue did not sound like blue and purple sounded like elbow! Part way through the list, it was as if my brain shut down and threw a tantrum like a spoiled 2 year old. I lost all discrimination of what she was saying. It was a really strange feeling. But within a min it came back. I chalk it up to my brain being super confused and not knowing what to do with these sounds. 
After that, we moved on to days of the week and then the months. I’m happy to say, I know them all well, and I did a pretty good job of understanding them too. One cool thing when she grabbed the paper to write the months, I heard the rustle of the paper just like it should sound! 
We chatted a bit more and Sylvie asked if there was anything that I didn’t like about what I was hearing. I didn’t have any complaints. Then I finally got to put my right processor back on and I got to experience stereo sound for the first time in ages! What a sensation… Almost instantly I gained the clarity from my right ear. My tinnitus quieted down (oddly, I noticed it more in my right ear) and while it was still very much there, it was far less prominent. 
We chatted some more so I could get used to the two ears and make sure they sounded balanced. It was very cool to be able to hear from both sides. I can certainly see how bilateral users tend to not rehab their second as much as their first. It sounds SO good with the two together and very lackluster with just the new one. However, I’ve promised myself that I will commit a couple hours a day to train my left ear alone. I figure I owe it that much. 
Sylvie saved my program for my new processor and I got unhooked from the computer. As an afterthought, I figured we should test my compilot to make sure it works with the new ear since that’s what I use for my training. I grabbed my phone and linked to my compilot and started streaming music. WOW!! Blown away!! The sound was AMAZING!! I think that was hands down the best experience of the activation (of course I had told hubby to shut down the camera so we didn’t get my reaction on video). I’m listening to music now. It’s so much richer with two ears and I still can’t get over how clear lyrics are. And the more I listen to a song, the clearer the lyrics become. I’ve been switching back and forth between right and left only and it is wild to see the difference in what each ear is “hearing”. It’s definitely not the same, but the two together really sound good. 
I still have my work cut out for me and lots of mapping and rehab in my future to reach my max listening potential. Even so, I’m convinced and hope that I am proof that two ears really are better than one!

Almost there…

Almost there…

August 8, the day I will experience sound in both ears. Ironically, it is also the date that was initially given to me as my surgery date. If you had told me 3 months ago that I would be hearing in both ears before summer was finished, I would have laughed. Hysterically. I never imagined it would happen at all, let alone so quickly. 
To say I’m excited is a bit of an understatement. I’ve been dreaming of being able to hear out of both ears for such a long time. It’s been an emotional roller coaster to get to this point – from not qualifying 5 years ago when I first tried to get implanted (scored 1 or 2% too well on my speech comprehension – I think I was just a really good guesser); to finding out Ontario only gives one implant to adults; to losing my hearing in my good ear; to my first implant; to losing my hearing in my bad ear; all the while dealing with my demon called tinnitus; to the miracle of being told my other ear would be done; to my surgery date being bumped up!
Whew! Quite the ride indeed. I can only say how richly blessed I feel. I know that I am literally one in a million (ok, maybe not a million, but one of the very few) to be gifted hearing with in 2 ears in Ontario. I hope that I will be able to make a difference here and perhaps my story will help inspire the powers that be to give the gift of hearing to anyone that needs it. It is something that too many people take for granted. 
I still don’t know how well I’ll be hearing out of my left ear, or if it will calm my tinnitus. Honestly, if I have to deal with T until my dying day, I will do so with grace and thanksgiving now as this curse is what brought me access to sound times 2. For some reason, it actually does make it a bit easier to accept. 
The wait to activation is brutal. It’s kind of like anticipating your first day at a new school or job where you don’t know a soul – no idea what to expect. It could be absolutely amazing or totally terrible. My first round, I was blessed with a rockstar activation and was understanding speech from the get-go. However, just because that happened with one ear, doesn’t mean it will happen with my second. In fact, I’m trying really hard to keep my expectations low because the chance of another activation like that will be tough to match. 
Even though I know what to expect this time in terms of the process, there’s just no way to predict the results. That has to be the hardest part of being a CI surgeon or audiologist. They simply cannot predict or guarantee results. Maybe that’s why there are so many that oppose or resist CIs. 
Regardless of my actual results on this one, I’m prepared to do everything I did the first time. I’ll have to commit to wearing only my left processor for a fair amount of the day to force my brain to relearn hearing with that ear. I’ll also have to start back up with the rehab. It’s going to be tougher this time because my hearing with my right ear is so good now, that I’m not going to want to go back to the chipmunk voices, crazy sounds, and awful music. My surgeon thinks it will be less rehab since my brain’s done it once already. Sure hope he’s right and that my ears like to play together nicely. 
As I’m writing this, I’m listening to music from my phone, streamed straight to my brain – no one is wiser to my grooving tunes. The thing that I find myself marveling at is how much better I can understand lyrics now. Before I had no chance of catching lyrics unless I looked them up. Now, I find myself getting a good portion of the lyrics in most songs. Pretty cool, if you ask me. Wonder how things will sound 6 months from now. 
For now I must sign off, a big day is awaiting tomorrow. I’ll report back to let you know how activation #2 goes. 

Benefits of Bilateral

Benefits of Bilateral

It’s been just over a week since my surgery and I’m happy to report things have gone far better this time around. I never even opened my heavy-duty pain meds and managed just with extra strength Tylenol. Don’t get me wrong, there’s still pain & discomfort, but it’s manageable. I also had no problems with my taste buds this time. I think that might be my biggest relief – it really sucked not being able to taste my food for 5 months! This time I took off the nasty crusty bandage on the second day and replaced it with a nice fresh one. That one has since been removed as well since there has been no bleeding/leaking issues since the 3rd day. 🙂 I’ve managed to bathe AND wash my hair (keeping the incision dry) a few times thanks to my totally awesome undercut hairstyle. It’s amazing how much more human you feel when you’re clean. 

I still have to take it easy and have been doing a fabulous job of becoming one with my recliner. Unfortunately, my sleep patterns are totally messed up and I find myself unable to drift off until 3 or 4 in the morning. I’ve been passing the time with Netflix marathons and have almost completed the first 3 seasons of “The Blacklist” among a few random movies/shows. 

If you know me or have read my previous posts, you know how big of a deal it is that I received my bilateral implant. As I mentioned in a previous post, I owe it all to my amazing audiologist. I’ve been spending a lot of time in thought and am continually overwhelmed with gratitude to my audiologist as well as the people at Advanced Bionics. It’s a very powerful feeling of indebtedness (in a good way!) that you get when someone is responsible for giving you your life back. So today I decided I had to figure out a way to show my appreciation. 

I came up with this design (disclaimer, I am not the creator of this concept; I had seen it on Facebook) and decided to have it printed on nice stainless steel travel mugs. Took me a good while to find a place to have them printed but finally did. So, I took a picture of my processor and threw this together in Photoshop. The mugs should be in by the end of the month, just in time for activation day! I really hope they like them and find them useful. The design is significant to me because the 2 processors represent bilateral hearing and the heart shape indicates how much I love the world of sound that they will bring me. I really can’t wait to give them their mugs!

I have also spent a LOT of time thinking of being bilateral this week. Obviously, I’ve been dreaming of this for years, but as the time draws near for me to actually hear in both ears, it has dwelled in the forefront of my mind. 

Hearing bilaterally is natural. That’s why God created us with two ears. There are numerous benefits of bilateral hearing that most people probably don’t even give a second thought to. To start with, there is less “hearing fatigue” and it’s easier to hear in noisy settings as you have two ears sharing the job of listening. Sound location is also made possible with 2 ears. Stereo (surround) sound (capturing sound from all directions) is only available when you have 2 ears. There is an increase in speech comprehension as well, when you have 2 functioning ears. All that stuff comes naturally to those with normal hearing. 

I’ve been severe to profoundly deaf in my left ear since I was a teen so I grew up relying totally on my right ear (even though it was moderate to severe). I would watch people talk on the phone, switching from ear to ear with envy. I had to be positioned on the left side of the classroom so that my right ear was facing the teacher. I always had to think about where I sat at a table to maximize conversation comprehension. Even my friends knew not to talk to me on my left side. When one ear doesn’t work, you also end up with “head shadow effect” which means sounds originating directly on the side of your bad ear are missed because your head blocks the sound. 

Going bilateral will hopefully give me all those great benefits I mentioned above but also a few more. The most important benefit, to me, though is redundancy. I will now have two implants & two processors in the event that one malfunctions or breaks. This single benefit, in and of itself makes the whole surgery worth it in my opinion. It is a huge reassurance knowing that the failure of both devices at the same time is a very slim possibility so I will hopefully always have access to sound. 

With my upcoming activation day, I am doing my best to keep my expectations in check. Because my left ear has always been my weakest ear, the likelihood of a stellar activation like my right is slim. Plus, I have had no stimulation of the auditory nerve for about 6 months where my right only went just over 4 months without stimulation. Neither of those factors are good. However, my surgeon indicated that sequential bilateral implants performed within a year of each other show comparable success to simultaneous bilateral implants and faster rehab in comparison to sequential with more than a year in between. 

You may think that since I have 1 brain and it’s already learned how to hear with a cochlear implant that a second one would be a piece of cake. Unfortunately, that doesn’t seem to be the case. I have to prepare myself for another long haul of training & rehab to hopefully bring my hearing up to par with my right ear. I’ve committed to doing just as much rehab as I did with my right (more if necessary) as I want to maximize my ability to hear. There is also a slim chance that both ears will hear equally well as typically, CI users still favor one over the other. Regardless, there is almost always a marked improvement in speech comprehension, especially in noise, with 2 implants over 1. The biggest hope with all this though is to gain relief from my Tinnitus. At the least, it should help mask the roar, but perhaps with both auditory nerves receiving stimulation, my brain may finally quiet. Only time will tell just how well I will be able to hear with my left ear and I am anxious to find out! Just 3 more weeks to activation!

No Laughing Matter…

No Laughing Matter…

If you read the previous post, you already know that I just had my surgery for my bilateral (second) implant. This one happened so fast that I really didn’t have too much time to obsess over it. Less than a week, really. I have to say, I’m glad it happened that way because on the one hand, I know what to expect; but on the other hand, I KNOW WHAT TO EXPECT! 

The surgery is not a pleasant experience and there are a number of discomforts and side effects we have to go through. Don’t get me wrong, it’s worth going through that a hundred times to be able to hear again, but it doesn’t make it that much easier to jump in to. 
I had a rough go the first time. Starting with loss of taste, a bad reaction to the pain meds, an excessively “leaky” incision, constipation from the meds, and just general overall discomfort for a good week and a half. You can see why I may have had some anxiety going into this one. 

The biggest plus of knowing what’s coming was the hospital routine – I knew exactly what to expect there. Even better, I could actually hear the doctors & nurses this time around since I could wear my processor all the way through. 

Ready for round 2!

My surgery was scheduled for 8am so I had to arrive at 6:15. A bit early for my liking, but I was glad I didn’t have to go the whole day without food since I couldn’t eat after midnight the night before. I made sure to really up my fiber intake and drink lots of fluids in the days before surgery to help combat the horrid constipation I had the first go round. 

I checked in and got decked out in the fashionable hospital gown. Seriously – why haven’t they improved hospital attire after all these years?? Then waited to be wheeled back for surgery. 

Finally my turn came and I said goodbye to my hubby. I answered the same questions to probably 8 different people as I waited outside the operating room. My wonderful audiologist, Sylvie, was there too. It was so nice to have a friendly face there to help calm my nerves. She showed me my AB implant box (I joked that it would not have been cool if they implanted me with a different brand – so actually, I was really happy to see that!) and we chatted a bit to take my mind off things. 

They wheeled me in to the operating room and transferred me to the operating table. As they were preparing to put my IV in, I made mention that I have a slight aversion to needles. Actually, I said I really hate them. They said, no problem! We’ll just give you a bit of laughing gas to take the edge off. Ok – if you’ve never had laughing gas, let me just say that it is no laughing matter! It was the most trippy thing I have ever experienced. As they started the gas flowing, I suddenly found myself trapped in a time loop – a jerky cartoonish replay of the same few seconds, over and over. I was aware of them ripping the tape for the IV – but it was repeated in my mind a multitude of times. Then the feel of the needle pricking me, over and over and over again. During this whole experience, I kept trying to rationalize what was happening in my mind but all I could think of, was I was going to relive the same few seconds for the whole surgery. It seemed like an absolute eternity and I must say, was not a funny experience. I’ll suck up my needle phobia over laughing gas any day!

Thankfully, the laughing gas wore off and then they were telling me it was time to take off my processor so they could put me under. Moments later I was blissfully ignorant of anything happening and the next thing I knew I was waking up to have my head X-Rayed. It took me a good amount of time to really come to, but I wasn’t feeling too bad when I finally woke up a few hours later. It was probably around 3 pm when I became coherent. 

One thing I noticed this time around was that the pain seemed far more tolerable compared to the last round. In fact, I only needed 1 heavy painkiller during the night. Aside from that, just Tylenol was needed to keep the pain manageable. 

My recovery station

I got discharged at 6am the next morning and had my behind planted in my recliner by 7:30am. Since then, I’ve been taking it easy but the overall feeling has been that this has been far easier than the first one. We’ll see how it goes from here, but feeling pretty positive! Oh, and in case you’re wondering, my fiber plan totally worked! My bowels are functioning as they should. Hallelujah!!

Silver Linings

Silver Linings

I’ve been a bit on the quiet side lately as there has been a lot on the go here. The main reason I started this blog was to chronicle my journey to sound through cochlear implantation, but also to create a platform for which to spread awareness for the need for bilateral implants for adults in Ontario. When I began this journey, I went into it fully expecting that I would never be able to hear from both ears but knowing I would fight for the right for all to be able to hear from both ears. Little did I know that God had other plans for me. 

My sound booth scores at 6 months!

Back in May, I had my 6 month follow up appointment and it was amazing. I had my first post-activation testing in the booth and I did really well. In fact, I scored 94% on my sentence discrimination test in quiet and 75% in noise and my sound field puts me in the normal hearing range. Now, I’ve been told that at only 6 months post activation, that’s pretty remarkable. I don’t ever recall scoring that well on any testing in my life! To say I’m happy with those results would be a slight understatement. 

On top of getting great test results, I also received some amazing news that day. My audiologist informed me that the CI team was putting me forward as a candidate for a second implant, due to my debilitating tinnitus. The surgeon just needed to approve it. In that moment, my tinnitus went from the bane of my existence to the silver lining on my cloud. 

About a month after my follow-up, I received word that the surgeon had approved me for the second implant and they had me tentatively booked for August 8th! I was on cloud nine! While I wanted to write about it and tell the world, part of me was reluctant in that things can change so easily with the health care here. I was afraid that somehow I might jinx it and for whatever reason they would take it back. Another part of me felt horribly guilty that here I was receiving 2 implants in the span of just over a year. That’s kind of unheard of in Ontario. I know I’m a unique case; specifically with my recent deafness and maddening tinnitus. It really did make me a prime candidate, but I still feel for every person that is sitting on the waiting list to get their first implant. 

Two weeks ago, I got an email from my audiologist asking if a spot opened up in July, if I would want to take it. Of course, I said yes! Well, on July 4th I had my meeting with the surgeon and he confirmed everything was a go and that they would be bumping me to July 10th. So, as I write this, I am a newly implanted bilateral CIBorg! I still won’t be activated until August 8 (ironic – that was my original surgery date!) It has been an absolute whirlwind of a ride and I am so happy right now. 

Looking good after my second implant! I’m bilateral!!

It just goes to show how God can take a bad thing and turn it into something good. I had resigned myself to living with my jet engines in my head and while this surgery may not take it away (still very much there right now) it will provide me access to other sounds and hopefully with time, will diminish. Ever since I was a teenager, I always wondered what it would be like to hear well with both ears. Sounds like I’ll get to find out after all! I will continue to use every resource I have to speak up for bilateral candidates in Ontario. I hope that one day this surgery will be readily available to all who need it, regardless of age because I truly believe that 2 ears are better than 1. 

For now, I have to give a shout out to my surgeon, Dr. Schramm & his team who took great care of me with both surgeries. To Advanced Bionics for creating the amazing technology that I have in my head & the processors that give me such amazing sound – the people there are nothing short of awesome! Last, but certainly not least, I owe a huge thanks to my audiologist, Sylvie, who has gone to bat for me multiple times to get me the treatment that I needed and to whom I owe my ability to hear as well as I do. She is my hero and I can never thank her enough. Sylvie, you have changed my life! Thank you!!

Life Sounds Good

Life Sounds Good

Yesterday was my 6 month “heariversary”! I can’t believe that half a year has gone by already, and yet at the same time, it feels so natural to be hearing like this. It’s actually easy to forget that I’m deaf, sometimes. That is, of course, until I take off my processor. 

This journey so far has been nothing short of miraculous. To go from barely hearing anything (only the loudest sounds) and no hope to understand speech to be able to watch TV without captions or have a conversation without lipreading is mind boggling. I still struggle at times and certain people will always be difficult for me to understand, but I HEAR!! 

Spring has Sprung!

The sounds of life are so wonderful to experience again. Now that spring has finally come to the great white north, I am overwhelmed with the sounds of the world awakening. From the twittering of the birds, to the trilling of the frogs, to the rustle of the wind through the trees – life sounds so good!

I find myself captivated listening to the beauty around me. For so long I have relied on all my other senses to portray the beauty in nature. Now, I sit outside and close my eyes and just listen; enveloped in the magnificence of spring & life. 

I am so grateful that I can truly appreciate the gift of hearing; for I do not believe one can realize the value in something until they have lost it. Each day when I wake up and put my “ear” on, I feel overwhelming gratitude for the technology that provides this blessing. Music, laughter, birds, rain, frogs… I can hear them all and all I can say is: Life. Sounds. Good. 



I’ve been seeing quite the kerfuffle on a few Facebook groups lately about labels and not the itchy, scratchy kind on the back of your T-shirt. Labels for people. In the Deaf community, as I recently learned, the label “hearing impaired” can be apparently quite offensive. 

Now, I am deaf, but I am not Deaf. This too is another label that I’ve been trying to wrap my brain around. Apparently Deaf, with a capital D, indicates being part of the Deaf community. On the other hand, deaf (lower case d) indicates late deafened or hard of hearing. I also wrongly assumed that deaf meant zero hearing or so little hearing that assistive devices do not help; and hard of hearing (or hearing impaired) means diminished hearing of which hearing aids can provide assistance. It appears that the term “deaf” encompasses all three of those terms. 

Personally, I prefer the differentiation between someone who uses aids and can hear sounds verses someone who is unable to hear any sounds. I suppose my reasoning behind this is to help people better understand the spectrum of loss. Up until the point where I lost all hearing in my good ear, I would have never labeled myself as deaf, but hearing impaired or hard of hearing. 

So this brings me back to the topic of labels. Labels actually serve a good purpose. Consider food labels on canned goods. Without the label, you’d have no way of knowing what is inside and what kind of care/handling that product requires. Likewise, labels for people can serve a good purpose too. They can help people understand in a word or two, what struggles or issues that person may face. Autistic, visually impaired, blind, hard of hearing, epileptic, diabetic, etc. are all labels that get applied to people. Of course, not all labels have to indicate a disease or condition and these are just a tiny fraction of the labels out there, but this is the filter I am writing through. 

What bothers me the most, is the way that some people get offended simply by the terminology that is used. Hearing Impaired vs Hard of Hearing for instance. For some reason, the term “impaired” is seen as offensive. Being that I am such an impaired person, I have difficulty taking offense to that term. If saying I am hearing impaired helps those around me to understand the struggles I face, then why not use it? I am not ashamed of my labels. I may not be exactly proud of them either, but it is what it is. I am deaf, I am epileptic, I am an entrepreneur, I am a wife, I am a mother, I am a daughter… These are all labels that can be applied to me. Each one gives a tiny snapshot of who I am, and none define me completely. 

So while it would be great in theory to remove all labels and see each person as the same, those little labels are what make each of us unique and can help others get to know us a bit better. What we need to do is simply accept who we are and wear our own labels regardless of what terms people try to use. By showing compassion and patience when explaining our labels to people, we will help break down barriers and hopefully provide a deeper understanding of our struggles to those around us. 

What are your thoughts? What labels do you wear?