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. 

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 have 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 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 still 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 who 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. 

Labels. 

Labels. 

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?

Lucky in Loss?

Lucky in Loss?

A recent facebook post on a deaf community group went something like this: “Do you feel lucky to be deaf?” A rash of comments ensued including many heated comments from both sides of the argument. I stayed out of the conversation, but it did get me thinking. Do I feel lucky to be deaf?

My first initial reaction is, “Heck no! It sucks!”. I live in a hearing world and to suddenly take away the access to sound makes life very difficult. I am not a part of a deaf culture (there is no deaf community where I live). I don’t have deaf friends. I have deaf family, but they’re half-way across the continent and they all have CI’s and live in the hearing world as well. Being deaf in a hearing world can sometimes feel like being stranded on an island, completely cut off.

Technology certainly makes being deaf today far easier than it was 20 or 30 years ago. So much communication can occur through text now. Emails, texting, TV captions, and voice to text apps have been lifesavers. Of course, my cochlear implant being the greatest tool allowing me to be immersed in the hearing world despite my loss. But that’s certainly not enough to make me feel lucky to be deaf. Luckier to be deaf in this day and age; sure, but NOT lucky to have lost my hearing so that I HAVE to use these tools if I want to communicate.

Dealing with tinnitus certainly doesn’t allow me to enjoy the sounds of silence as I have never experienced what that really feels like. Perhaps I would feel lucky if I didn’t have lawnmowers constantly running in my head. I can see how momentary breaks from the noisy world could be nice. There are instances where I enjoy taking off my processor to break away from the noises of the world, only to have the noises in my head come in full force. Sure, I don’t get awakened in the middle of the night by my hubby’s snoring, but I also wouldn’t wake to the sound of a smoke alarm, intruder in my home, or my child crying either. So, no, not really lucky there either…

With all that said, I don’t really believe in “luck” anyway as it makes life feel so random and inconsequential. I honestly avoid using that word at all costs. I never say “good luck” but instead “best wishes”. I believe that there is a God that is very patiently weaving the threads of my life together. Being deaf is just one small thread in the tapestry of my life. There are a lot of threads being used and perhaps a number of them could be viewed as “unlucky”. I also have epilepsy, had breast cancer, grieved 2 miscarriages. I could go on.

However, when I stop looking at these individual threads and step back and look at the entire tapestry that is still being woven; it’s a beautiful picture. An amazing husband and two wonderful children; friends and family that mean the world to me; a (mostly) thriving business; a fabulous community; and a rock-solid faith. On and on it goes. I am so blessed beyond measure and every part of me, every event that has happened in my past has brought me to who I am today. So no, I am not lucky to have lost my hearing; but I am certainly blessed that the loss of my hearing has helped make me who I am today. I think that’s a pretty good thing.

famtapestry
My lovely tapestry
A silent world

A silent world

“Blindness separates people from things; deafness separates people from people.”

~ Helen Keller

I grew up with the understanding that “deaf” meant you can hear nothing while hard of hearing meant diminished hearing ability – even if you couldn’t understand speech, but could still hear sounds, you were hard of hearing. After going deaf (by my definition) in my right ear, I joined several online deaf communities. I was surprised to learn that a lot of people who consider themselves deaf, still wear hearing aids and can hear some sounds. 

There is a huge difference between hearing some sounds and hearing nothing at all. I have journeyed down the road from moderate to severe to profound hearing loss and now reside at total deafness, so I can say I’ve experienced life on both sides of the fence. 

It’s hard to describe what being deaf is like. For a hearing person, there really is nothing you can do to experience total deafness. Sure, you can plug your ears, but you can still usually hear some sounds. You could go into a soundproof room, but you’ll still hear the sound of your breathing and your heartbeat or the rustle of fabric as you move. So while you can experience how it feels to be hard of hearing, I don’t think a hearing person can truly understand being deaf

Since losing all my hearing, there have been moments when I feel almost claustrophobic – like all the walls are closing in on me, an almost suffocating sensation. I feel like I need to escape the silence but I can’t get away. To be fair, my silence isn’t nothingness but instead a massive, constant roar of tinnitus. Maybe being deaf wouldn’t be so bad if I didn’t have the constant roaring. I find myself either longing for pure silence or any sound that could drown out my roar. 

My cochlear implant has been my saving grace. I cannot imagine not having the ability to simply hook up and hear when I want/need to. It has brought back my sanity. Before my right implant, I still had a small amount of hearing in my left ear. Not enough to really help me communicate, but there was still some access to sounds. Now that both ears are “dead”, I only have access to sound through my single cochlear implant. The issues I have been having with my processor these last couple of days have forced me to face the reality that I will always be deaf. I depend on a tiny, miraculous piece of technology to pull me out of the world of silence that I am in. Because of this, I have an even greater desire for a second CI, even if only as something to fall back on. With only one, if/when my processor doesn’t work or if my implant fails, I will be unable to break the silence. 

There is a big controversy in the deaf community over CIs, particularly relating to implanting children. They view a CI as the hearing world’s attempt to “fix” those in the deaf community and they see it as a threat to their whole culture and way of life. While I can certainly appreciate that view; for someone like me to be cast into the silent world with no connections to the deaf community, it is extremely hard. 

I know limited ASL, but where I live, no one else speaks it. So while it’s wonderful to have that second language, it is utterly useless in my everyday life. Sure, I could encourage my family to learn it, but there is still no deaf community for me to be a part of where I live. 

It is not about being broken and in need of fixing, but the ability for me to be a part of my community and enables me to reconnect with the people in my world. My cochlear implant is a lifeline to the world of sound in which I live.