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.

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. 

Trouble in paradise?

Trouble in paradise?

It happened. I had my first major issue with my processor last night. Hubby had a YouTube video on that had REALLY annoying techno music and it was really grating on my nerves so I started to ask him if he could turn the sound down. As soon as I began to speak, my voice sounded like I had become possessed by demons. Then came high pitched squealing and whistling. Everything sounded horribly loud and distorted. I quickly removed my processor and checked it to see if there was anything obviously wrong. Put it back on, and the same thing happened. Voices sounded like a voice scrambler was being used, deep, robotic, and garbled. Tried changing programs and it seemed to work but after a few minutes the garbled sound returned. I was devastated!

They say when it rains, it pours; well that was me last night. After coming to the realization that I no longer had any natural hearing left, to then lose my processor on the same day was a massive blow. I pretty much fell apart in a million pieces and a puddle of tears. Of course the worst scenarios played through my head; what if the implant has failed? What if my ability to hear has suddenly degraded and I never hear properly again?

I packed everything in to my dry box for the night and said a prayer that things would be better in the morning. Shot an email to my audi, begging for her to squeeze me in today. Woke up this morning and with great trepidation, hooked up my processor. The garbled sounds were gone, but everything was painfully loud! I had to turn down the volume quite a bit to keep from wincing with every sound. My audi responded first thing and said she could squeeze me in at 2:30. 

When the time came for my appointment and I got hooked up, everything appeared to be working normally! Part of me was relieved while the other part was frustrated. What on earth would cause that kind of “malfunction”. I really don’t want it to happen again but since we don’t know why it happened, we have no way of knowing if it will happen again. We tried another processor with the same map and while I didn’t get the distorted sounds, it too was painfully loud. So we remapped my processor and turned down the levels on a few of the electrodes to where it was comfortable and stored both the new and old maps in separate programs. This way if I find I’m not hearing so well with the new map, I can go back to the old. 

The last thing we did before I left her office was to check the hearing in my left ear.  I sat in the booth waiting for her to start the test and after a few minutes she got up and came in and said, nope – it’s gone. I really didn’t think she had even started the test. So, I was correct… There is no natural hearing remaining.

Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. Matthew 10:29

However, today was not all bad. I heard birds chirping for the first time since going deaf! Not just that, I actually heard the fluttering of their wings as they flew around the shop entrance I was about to go in. I stood there for a good couple of minutes with a big goofy grin on my face, reveling in the sound. They were just plain sparrows, but are honestly one of my favorite birds – as a child, I rescued countless sparrows (much to my parents chagrin, I’m sure). How fitting that the first birds’ song I hear would be that of a sparrow. Once again, I am reminded of the blessing of my bionic ear and the beauty of this noisy world. 

3 1/2 months post activation

3 1/2 months post activation

It’s been almost 4 months since activation and almost 8 months to the day that I lost all hearing in my right ear. Today I woke to the realization that the small amount of hearing in my left ear is gone. The last few weeks I had been experiencing a massive increase in my tinnitus and the past couple days have noticed the same static/crackling sounds of a poorly tuned radio from my left ear – the same symptoms I experienced in my right ear last year before going completely deaf in that ear. This time it was less noticeable though as my left ear really hasn’t had much hearing for a very long time and I rely heavily on my right to hear. Even so, the small amount of hearing I had did allow me to hear sounds with the assistance of a hearing aid. It added depth and “bass” that I don’t get from my cochlear implant even though clarity was non existent, plus it did help me to locate the direction sounds were coming from (impossible with a CI alone). 

There is a certain finality to the realization that I have no natural hearing remaining in either ear now. A level of grief that I didn’t really expect to experience as I have considered myself deaf since June. It seems there are 50 shades of deafness and I have now hit the “stone deaf” shade. Don’t get me wrong, I am blessed beyond measure to be able to hear through my cochlear implant in my right ear. Not a day goes by where I don’t appreciate the technology that allows me to hear. Even so, the reality is, I will always be deaf. Without the assistance of my CI, I can now hear nothing but the lawnmowers that continue to buzz in my head, louder than ever before. 

I admit, I shed a few tears today in silence. I mourn the loss of a sense in its entirety. It is sad that we so easily take things for granted until we no longer have the ability or access. Yesterday I remarked that I found it incredibly cool to be able to carry on a conversation in the dark. Not one of my hearing friends understood what I was talking about. However, the same comment made in a cochlear implant users community was echoed by so many. When you have the ability to hear, you tend to take those little things for granted so the impossibility of hearing someone speaking in the dark is lost on you. 

I wake up every morning now to the sound of my ever constant mowers and I take a few minutes to hear nothing else, to remind myself of how blessed I am to hear with my implant. I don’t ever want to get to the point where I take that for granted. 

I still find it incredibly cool to have a bionic ear. The quality of sound and my ability to listen with it has greatly improved over the last 4 months. Voices are so much better – not quite normal, but close! I know my journey to better hearing isn’t over yet and I hope that it continues to improve over the next few months & years. 

I keep praying and hoping that Ontario will loosen the purse strings for those of us who are bilaterally deaf to be able to have implants in both ears. Now more than ever, as I have nothing to lose in that ear and everything to gain. The biggest fear lingering in my mind is the limitation of an electronic device. This one tiny processor is the only thing that links me to the world of sound now. Should that fail, I am plunged back into the world of silence. It may not be the worst place to exist, but the sounds of life are a beautiful thing that no one should have to miss. 

My daughter and sweet baby niece. Just two voices that I’m blessed to hear.
3 weeks post activation

3 weeks post activation

Happy Birthday to me. Today is my 40th birthday. Funny, I always had a feeling that I would be deaf by the time I hit 40. Ironic that I’m celebrating my 3rd week “hearing” today. Sounds are beginning to seem more natural and I am enjoying hearing again. That said, I have a long ways to go and at times I find myself getting frustrated with my head for not working right. Voices are still the worst. 

I really wish I could sit down and have a little chat with my brain and make it start listening properly. When I hear strangers speak, it’s nothing but chipmunk chatter. Sure, I can usually understand the words they’re saying, but it all sounds so unnatural. It’s frustrating because I can remember what voices sound like and I find I am getting mad at myself for not hearing the way I should. But then again, I “shouldn’t” be hearing anything at all but thanks to technology, I can! I am by no means complaining or regretting my decision to get this implant, but simply being honest about the process. Even with a “rockstar” activation, it’s not all sunshine and roses. I went to a support group meeting on Saturday and one thing that was very clear, is that no two people have the same journey or the same results and I truly am blessed with how well I’m coping thus far. The one thing we all have in common? We all had to work to improve our ability to hear. 

I do have some great technology that works hand-in-hand with my processor; namely my Compilot. This is a small Bluetooth enabled device that pairs with other Bluetooth devices and streams sounds directly to my processor. I also have the TVLink and remote mic that pair up with my Compilot. The TVLink hooks up to my TV and the remote mic can be used to hear any individual person at a distance, or up close when there’s lots of background noise. The Compilot also pairs with my iPhone and tablet for direct streaming of audio to my processor. 

My cool Compilot!

This tool has been integral to my success thus far. The beauty of the compilot is it can stream audio direct to the processor without all the background noise. If you’ve ever worn noise cancelling headphones, that’s probably close to what it’s like – just the sound you want to hear without all the background chatter. My brain hasn’t figured out how to filter all those unneeded sounds yet, so the compilot accomplishes that for me. It’s remarkable to hear all the small sounds on TV that I’ve never heard, like footsteps as someone walks or sighs or even just breathing. I call it my ninja sound, especially when I’m streaming from my iPhone as no one has a clue that I have music playing in my head. It’s pretty cool!

At this point in my journey, I have to really focus in order to understand speech. It’s as if I have to actively tune my hearing at all times. Regular everyday sounds come in, no problem, but to catch what someone is saying, I really have to work at it. I notice this mostly when I pass by people conversing – I hear their voices but unless I actively “tune” my hearing I won’t catch a single word they’re saying. Maybe it’s just because I’m out of practice when it comes to listening, or perhaps it’s because my hearing is more mechanical, I’m not sure. What I do know is that it’s an exhausting process. When I do engage in conversation, I still have to work extra hard to actively listen. It really is like a switch, when I get tired, that switch flips off and I could be right there facing someone talking and miss everything they say, but with a little focus, their speech becomes perfectly clear. It’s like I have a super power and have to work on honing my skills. Regardless, I really look forward to the day when listening becomes natural again. Until that day, I’ll keep working on my ninja/superhero hearing and loving every step of the process!

2 weeks post activation

2 weeks post activation

Activated! My cool AB Naida Q90 processor.
I have been hearing for 2 weeks now and all I can say is I’m still in awe. I was blessed to have what is considered a “rockstar” activation. To put it simply, when they hooked me up to my processor and switched me “on”, I was not only hearing sounds, but actually understanding speech. What a remarkable experience to go from zero sound to hearing. I heard the swoosh of a piece of paper as it was pushed across the desk, the rustle of plastic wrap as a package was unwrapped, the zip of a zipper as a bag was opened, and the rumble of my husband’s stomach as he patiently waited, seated behind me. These were just a few of the first sounds I heard. They didn’t all make sense to my brain or sound the way they should have, but I HEARD them!

Voices sounded extremely mechanical – like everyone breathed in helium or a bad rendition of Alvin & the Chipmunks. Even after two weeks, voices still have a very mechanical quality to them, but the sound is getting better. At first, I could not differentiate between a man, woman, or child – now I find it easier to tell men & women apart. 

I am quickly realizing how blessed I have been to have such a stellar activation. I hear often of people who struggle to make out words months after activation. Even so, it’s not an instant fix for me. I actively practice listening several hours a day. I use various apps and programs that are specific to training your brain to listen as well as simply listening to speech (TV/talk radio) and my favorite songs. They sound very different than the way I remember them, but in theory, my brain will eventually “click” and sounds will seem normal again. 

I can’t wait to get rid of the chipmunk voices, but the sounds I hear every day are nothing short of miraculous! Did you know that fluorescent lights make a pulsing sound? Light switches make a distinctive click when they are switched? Dog toenails clip on tile floors? My shoes squeak when I walk? Fabric whooshes when it rubs against itself. These are all sounds that I have NEVER heard, even before going deaf. My brain hasn’t figured out how to filter all these sounds out yet, but soon it will and I won’t notice those little sounds so easily, but right now I’m loving every little new beep, chirp, or click I hear. 

Already I have done things I never expected – talked on the phone; watched TV without captions; heard someone speak from another room AND understood what was said! It is exhausting and takes an enormous amount of concentration to get my new ear & brain to work together and it’s still far from perfect. Situations with lots of background noise or poor acoustics are nearly impossible for me to follow but hopefully that will come with time too. I have months, if not years, of practice & training ahead of me with several more mappings (adjustments & programs made to my processor to help optimize my hearing experience). For now, I am basking in the glow of sound and thanking God every day that I live in an age where technology can give back my ability to hear. Every day is a new experience and a step toward better hearing.