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. 

3 weeks post-op

3 weeks post-op

Last week, my stitches were removed. I can’t say that was an incredibly pleasant experience, but having them out meant I could shower! That had to be the best part – showering and washing my hair. I think I shampooed my hair 4 times to make up for the 2 weeks of grossness. Since then, things have been pretty good, although I had part of my incision split open and start bleeding again. Once more, turned out to be nothing to worry about. Things are healing as they should. 

Stitches are out!
Clean hair! Woo hoo!!

Being deaf, I miss a lot. I’m not just talking about sounds here, either. Sure, I don’t hear things like music, alarms, horns, water running, laughter, the doorbell, and every other sound that most people take for granted. I miss other things too. Because I focus so much on lip reading, I often miss body language or inflections in speech. Just like reading a text message, the tone can be misinterpreted and the meaning skewed. Watching TV or movies can only be done with captions on. When all your focus is on the words at the bottom of the screen, you can miss the entire gist of a show. I watched almost a whole season of a TV show once on Netflix only to realize I hardly knew what the characters looked like.  

Often, I get left behind in a conversation. It is simply impossible to keep up with the many twists and turns in context and topics. I try to piece together the flow of conversation, but I’m always one step behind. Just when I’ve fit all the pieces together and am ready to interject my witty comment, I realize that the tide has turned and I have no idea what everyone is talking about. If I’m lucky, I held my tongue and didn’t make a fool out of myself for making a comment completely out of context, if not I endure the puzzled, sometime ridiculing looks from those around me. I have come to learn to either stay silent and hope no one addresses me, or try to take charge and risk looking self centered so I can steer the conversations. But sometimes it’s easier to simply withdraw from social situations altogether, loneliness being more bearable than humiliation. Thankfully, being hard of hearing all my life, I learned to lipread at an early age. I rely heavily on that skill now. Unfortunately, it’s not perfect. If someone mumbles, talks too fast, has facial hair or lip/tongue piercing, or speaks with an accent, it’s far more difficult. I have gotten pretty good at bluffing my way through conversations. To be honest, I’m lucky if I understand half of what is being said. I feel bad; because, in a way, I feel like I’m lying to those around me. But truthfully, it is so much work to keep up with conversation when you can’t hear what is being said, that it’s actually easier and less embarrassing to just pretend to know what’s going on. Yeah, it gets me in trouble sometimes and that’s when I fess up and tell people I’m deaf, or that I have no idea what they’re saying. 

When you are deaf living in a hearing world, very few people understand. Some are obviously uncomfortable and walk away instead of trying to engage. Others overcompensate, shouting so I can “hear” them better. Almost every person though, immediately apologizes. I have often wondered why this is. It’s not their fault I’m deaf. They didn’t do it to me. Perhaps they’re apologizing because they spoke too quickly or without looking at me making it impossible for me to understand them. Regardless, if I tell you I am deaf, you don’t need to apologize. Yeah, it does suck to live in a hearing world, without sound, but I am managing. Just ask, “whats the best way to communicate?” I can lipread fairly well, but sometimes writing down or texting what you want to say is easier. 

Day 7 post-op

Day 7 post-op

My HUGE Frankenstein incision

My bandage finally came off. It was barely hanging on so I had hubby call the surgeon’s office. Guess what!?!? They’re closed until next week!! No joke… And their message said “if this is an emergency, hang up and call 911”. Umm, well… I’m not bleeding profusely, but according to the literature you gave me, this bandage is supposed to stay on for another week. So… What do I do?? Tried calling the local ENT, but he wasn’t in today. At least they had someone to speak to. I really can’t believe that the whole frigging CI program/office is closed for a week and not even a week has passed since they did 2 CI surgeries! Not even a nurse to answer questions or give advice. Unbelievable! Now, don’t get me wrong, I’m very grateful they got me in for surgery when they did, but wouldn’t it have been prudent to leave someone in charge in case either of their 2 patients needed something? 
We went ahead and pulled the bandage off and I got a good look at my Frankenstein line. It’s way bigger than I expected. Probably about 3 inches long and I’m guessing around 25 stitches. That being said, it looked pretty good. My biggest concern is my hair, it’s long and thick and frankly, very dirty since it hasn’t been washed since before surgery. So in trying to get my hair away from the sutures, my hair caught and pulled on one and it started bleeding. So what went from, “hey, this is cool”, quickly escalated to, “crap, what do we do?!?” Not like it was bleeding profusely, but it was dripping down my neck and after 20 min, hadn’t stopped. 

Now, in between finding out that the office was closed and actually removing the bandage, I took my dilemma to a CI users group on Facebook to ask advice. I figured these guys have all been there so they’d be the ones to ask. The majority all said that there was no way that bandage should still be on there. So of course that prompted me to take it off. I know these guys aren’t Drs or medical professionals, but they have all been through this journey too. Had it not started bleeding again, I probably would have just left it, but then, that would have been easy. 

Asked hubby if he could take me into emerg to see if they could cleanse it and bandage it. Got there and decided quickly that sitting in a room full of people with colds and flu would not be a good idea and anyway, the wait would have been 4-5 hrs for a stupid bandaid! Tried a local clinic, but they don’t accept walk-ins. Finally headed to the pharmacy to buy a bandage and do it ourselves. Amazing, these guys actually cared and helped us pick out what we needed for the job! Headed home with our bag full of goodies. I also shot off an email to my audi in hopes that she might have a suggestion or at least confirm whether or not the thing needed to be bandaged. 

Hubby did his best to carefully cleanse the incision and apply the bandage, but my hair proved to be a major pain. Got the thing semi-covered and mostly sticking so it’ll have to do. Still bleeding a bit after an hour of driving around town, so I’m glad we got the bandages. After all that excitement, I crashed in my lovely recliner and slept for 3 hours! I’m not sure how some people go back to work a week after their surgery. I’m still wiped out. 

In the time that I slept, the audi responded and suggested making an appointment with the same ENT that we tried. Unfortunately, he’ll be in the city tomorrow and not our tiny, rural clinic so that means driving an hour there and then an hour back. Once again, all for a stupid bandaid! I’d rather do that though than end up with an infection so looks like that’s my schedule for tomorrow. Yay…

First week is in the books and 3 more to go until activation. 20 days… Woo hoo!!

Day 6 post-op

Day 6 post-op

Last night was the best night sleep I’ve had in a long time. I only woke up twice between midnight & 10am. So I am very thankful for a good night’s sleep. I’m still able to manage on just 1 Tylenol 3 every 4-6 hours and I’m trying to push the time between pills a little further apart. I do still have swelling and a numb feeling around the back/side/top of my head. Guess I’m a real numbskull. Ha!

The bandage over the incision is driving me insane. It’s like a concrete block loosely taped to the side of my head. Most of the adhesive has come free too, so it’s not even really protecting the incision anymore anyway. I think I’ll have hubby call the Dr in the morning to see if we can remove it. I would much rather have a clean bandage put over it anyway. Not sure how a bloody, crusty bandage could be viewed as sanitary after a week! Apparently it’s supposed to stay on until my sutures are removed next week! Gross…

Nasty, crusty bandage.

I want to wash my hair so badly, but it’s imperative that I don’t get the incision area wet. With the amount of hair that I have and the way my head was shaved, I’m not sure how to go about that to ensure nothing gets wet that shouldn’t. So I guess I’ll wait. I gave myself a cornstarch shampoo yesterday. Google says it’s as good as those expensive dry shampoos. I’ve never used either before, so I wouldn’t know. I guess it feels a bit better, but nothing close to a real lather, rinse, repeat. I’m happy to say that things are definitely improving and while I will probably need a few more days of rest, I’m getting there. Every day is one day closer to breaking my silence. So thankful that I have this opportunity. Yes, it hasn’t been a pleasant week, but I would go through it all again to have the ability to hear. 21 days!!