Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.
Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been I few months since we did it. She actually ended up turning the volume down on that one.
After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:
- Everyday w/Auto Ultra Zoom
- Everyday w/Duophone/No Auto Ultra Zoom
- Background Noise
I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.
Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.
First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.
Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.
Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.
The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.
I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.
Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.
My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.
I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).
There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too, because you’re not where you want to be with it, either.
I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.
The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.
I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.
I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.
Image Credits: Pulse Magazine
I have a confession to make. If you’re deaf or hard of hearing like myself, than this should come as no surprise. In fact, if you’re deaf or hard of hearing like myself, you yourself are or probably have been in the same boat at one point or another. Here it is:
For years I have dealt with anxiety issues in social settings and in non-social settings. I also have struggled to sleep at night due to my anxiety and have had to take sleeping medication if I wanted to have any chance of falling asleep at night.
I am not along. Anxiety is very common in the deaf and hard of hearing world. There has been countless studies that link anxiety with hearing loss. The reason is simple: many deaf individuals are part of a hearing world, whether voluntarily or involuntarily. Even those who say they operate in a predominately deaf world will be forced to interact with the hearing world on almost a daily basis. It’s definitely not easy and a major cause of anxiety.
If you want to be technical, I am deaf but not Deaf. You may not be able to see a difference in these two words, but those with hearing loss knows what it means. To be deaf means you have a significant hearing loss, or no hearing at all, but you interact in a hearing world. To be Deaf with the capital D means that you have no hearing and you operate in a Deaf world. So what’s the difference?
Those who operate in the Deaf world sign. Their world is almost entirely silent. They go to special deaf schools. Their friends are more than likely all deaf, or at least always sign to them. They try to avoid being a part of the hearing world as much as possible. In contrast, those in the hearing world do not go to a special school. They strive to interact with the hearing world as much as possible. I fall into this later category.
Prior to getting my cochlear implant, interacting in the hearing world was very difficult for me. Not being able to hear can definitely cause a bit of anxiety. Here are a few examples.
I went to college. Not just any college, but Rowan University. A public university. I was a really great student and my professors loved me. I had two majors (English and Writing Arts) and a separate concentration (Creative Writing). These were all pretty unique majors that called for much discussion in class. My professors loved me and knew I was a good student, so they always liked to hear what I had to say. However, sometimes I had no idea what was going on in class. I tried my best to lipread. I have been deemed an “expert” lipreader. However, even experts aren’t always necessarily perfect. Sometimes people had a unique tone to their voice and it was out of my hearing range. The worst was when the chairs were arranged in single rows. I always sat in the front of the room to hear my professor, but I could never hear my classmates since they were behind me and I couldn’t see their lips to lipread. Sometimes I really wanted to talk about the book I just had to read in class. Sometimes I had a lot to say. But a lot of the times I was too afraid to say anything since I wasn’t able to follow every word or most of it and I wasn’t entirely sure what was going on. I would pray that the professor wouldn’t call on me because I didn’t want to look like I haven’t read or wasn’t paying attention. That’s how I always appeared, but the truth was I was paying attention! I was paying such close attention that I was exhausted from trying to figure out what was being said! But most professors don’t understand that.
There are two instances that really stand out in my mind as awkward post-cochlear implant college experiences. Once was during one of my first creative writing classes. My professor really liked me and wanted my feedback on many occasions. She was my favorite professor actually. I did pretty well with following along most of the time, but for some reason I really struggled on this particular day. I think the desks were rearranged making it harder for me to see my classmates and lipread or something. Needless to say, she asked me a question and I had no answer because I had no idea what was going on. I kindly explained that I couldn’t hear anything. My professor understood, but got pretty embarrassed. She apologized profusely to me, which made me feel a bit embarrassed and awkward myself. By trying to make things better, she kind of made it worst.
The other instance was with my Writing Children’s Stories class. Originally I was signed up to take the course with a British professor. He was an extremely nice guy, but I couldn’t understand a word he said. He had a strong accent and his voice was in a tone that was out of my range. I was never going to do well in his class simply because I couldn’t understand a word he said. I needed the course to complete my creative writing concentration, but the other professor who taught the class didn’t have any openings. I had to fill out a special form to get into her class. Unfortunately, this form had to come from the Academic Success Center. I’ve talked to the people over their multiple times and they were always super friendly and more than willing to help in anyway they could. However, they couldn’t help without having me first register as having a disability, something I never wanted to do. But I needed help, so I did what I had to do. Then I got into the class. I was able to hear my professor just fine, but 95% of the time during class, I never heard a word that my classmates said. Needless to say, the class was a bit less enjoyable than I anticipated.
Another time when my hearing loss was a great cause for anxiety was whenever I had to order food out. I always tried to avoid it as much as possible. When I was in college I would usually buy food from the little convenience store on campus where I could just grab something and have them ring it up for me with little to no conversation. I did try to order food from the various on-campus food places a few times, but it was always an incredibly awkward experience since I could never hear the person taking my order or making my food or telling me my order was ready. If I went out to a restaurant, I would make my family/friends/significant other order for me and translate what the waiter/waitress was saying for me. Then I would apologize or have that person apologize profusely to the waiter/waitress and explain that they were answering for me since I couldn’t hear. Pretty awkward. I would avoid going to bars like the plague. I tried it once with my ex and never wanted to do it again. It was so loud and noisy. I couldn’t have a conversation or hear anything and the noise didn’t sound like televisions or music the way it did to most people. I couldn’t understand what the noise was. To me it was just that…loud noise.
Now that I have a cochlear implant though, none of these problems seem to matter much at all. Unfortunately, I am not in college anymore so my college troubles are definitely a thing of the past (though I’ve definitely thought about going back to school on multiple occasions. Problem is, I have no idea what I’d want to go for…). However, I do work for a digital marketing agency. When I first started working here some of my coworkers thought I was pretty quiet. Just like I couldn’t hear in school, for the longest time I couldn’t hear well at work. This also caused me great anxiety. When we had department meetings I could never hear my coworkers. My former boss from my inbound marketing/social media marketing days has a tone to his voice that was out of my range so I hardly ever understood a word he said. The same was true for my co-workers who were from New Hampshire. And the phone? Forget that. If I ever needed to make a phone call I’d have to get another co-worker or my boss to do it for me. I couldn’t hear on the phone at all.
Now I’m actually a Social Media Project Manager and Assistant Digital Marketing Manager. Without my cochlear, I don’t think this could have been made possible. I am able to speak during department meetings and hear my coworkers. This means my communication with them has improved tenfold. I am able to help other coworkers with projects and discuss our clients with them face-to-face, whereas in the past I relied solely on IM since I could never hear them well enough in person. I talk on the phone with clients, especially those that I manage, on an almost daily basis. While I was a little awkward on the phone initially, I have improved greatly and am now able to speak very confidentially because my anxiety is just about completely gone. I can hear. There’s no need to be so anxious anymore.
I can’t remember the last time I seriously struggled to order food out. I have been out to eat countless times since getting my cochlear with my boyfriend and my family. I’m able to order food on my own without being dependent on others. If things get too loud I can just switch my settings around to block out the background noise. Eating out suddenly became much more enjoyable and less anxiety-ridden!
And my sleeping pills? I can’t remember the last time I had to take them either. There seems to be a whole lot less things keeping me up at night. I haven’t needed them. I am much less drowsy during the day now. Or to say it more simply, I’m living my life free of anxiety and I couldn’t be happier.