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.
Hey guys! Happy New Year! I hope you all enjoyed your holiday!
I had a pretty enjoyable New Year’s with it being my first New Year’s as a bilateral cyborg! I didn’t have too crazy of plans. I always just stay in with my family and we eat 7 different types of Seafood at midnight as the ball drops and make predictions on the year to come and reflect on the year that passed. I also enjoy a drink. I’m not much of a drinker and don’t like bars, so staying in and just making one drink is more than enough for me.
Last year was my first New Year’s living in the condo in Washington Township, so I knew from last year not to expect much in the way of sound. Our neighbors are pretty quiet and boring; there’s no running out with pots and pains and noise makers at midnight like there was back in Pitman and Woodbury where I used to live. There’s not that much noise to hear on NYE’s at all, so I knew not to get my hopes up too much about hearing different kinds of sounds.
But overall I’ve noticed a huge improvement with my progress with my 2nd cochlear implant over the past week and a half. I moved on to program 2 on Wednesday and it sounded much more comfortable, so I’m gaining sounds with that. I have been practicing words with my mom and playing with Angel Sound diligently. I am almost on level 2 for all programs on Angel Sound now. My biggest struggles have been vowel and consonant (especially consonant) recognition so far, but they are arguably the hardest programs and I still feel like I’m making good progress on them. I feel much more optimistic with it now than I did when I was first activated. I am seeing that this is a progress that takes time.
Pastor’s oldest daughter, Jessica,has been coming to our church with her husband the past few week. Last week she played the flute during service. I have mentioned previously how I wanted to hear a flute with my cochlear, but this is one of the first times I’ve been up close and really able to hear it. I could distinguish it from the other instruments pretty well. It was so beautiful. I was completely mesmerized by it just as I was the first time I heard a violin at church after I was activated with my first implant.
On New Year’s Eve I went to the liquor store to pick up some drinks for the holiday. I went to Hops and Grapes in Glassboro and if there’s one thing I learned about this particular liquor store over the years it’s that you’re almost guaranteed to run into someone you know. First I ran into my childhood best friend, Zach. We were very good friends growing up; he was like a brother to me. This was my first time seeing him in about 10 years so that alone made my night.
Next I ran into someone from one of the cochlear implant support group meetings that I talked to a few times before. My mom spotted him first and said “I just saw another bilateral cyborg! We got to find him and talk to him!” because that is apparently what bilateral cyborgs do. I mean, we’re a rare bunch so when we run into each other it’s like “Hey, sup, bro?” lol. But no, seriously.
As we were looking for him he ran into us and pointed out my cochlears. I didn’t immediately recognize him from the meetings, and I’m unsure if he recognized me, so we kind of both played it off as having not met before. We talked about the progress with our cochlears. He received his 2nd one last March and his is also from Advanced Bionics so he was able to tell me about his experience and he said he had a bit more trouble training his 2nd ear as well but that it’s pretty much there now so that made me feel a lot better. I told him about the Q90 processor and how I like it. He’s due for his upgrade soon, probably in Spring. It was definitely a nice little conversation!
Thinking of the cochlear implant support group…I’ll probably be seeing him again this week! There’s a support group meeting on Thursday. Med-El is going to be talking about their new listening/auditory program which could be a huge help for me training my 2nd implant. I look forward to possibly seeing him again and attending the meeting!
I noticed on New Year’s day I was really starting to make progress as well. The weird thing with my 2nd implant is that I feel like I’m getting music quicker than I did with my first one. Sometimes I think I’m making more progress with music than I am with general words and sounds. However, as a huge music lover, I’m definitely not complaining.
Every year my mom watches at least part of the Mummer’s Parade. One of her relatives (I think her uncle?) used to be a member of the South Philly String Band, so she watches to root for and support them. I always kind of ignore it because I think it’s kind of boring (sorry, mummers!) but I noticed as she had it on this year I could hear the music better than ever. It sounded amazing. I watched Fralinger’s performance and could distinctively pick out the bongos (or whatever kind of drum that was) and the banjos they were playing. It sounded amazing. I don’t think I have ever been able to really hear and understand marching band music like that before. It was so exciting and made me want to hear more band music. I have to get to a Philadelphia Orchestra show after both my cochlears are fully trained — I have a feeling it will blow my mind!
I’m doing much better now with my 2nd cochlear implant and it’s starting to become a very exciting time for me. I go to program 3 on Wednesday and then there’s one more program left after that and then I go back to Jefferson for another mapping. I can see that I am progressing and I know that the best is yet to come.
My new silver cochlear implant!
It’s been 3 days now since I’ve had my second cochlear implant activated. Although I knew what to expect this time around,that doesn’t change the fact that it’s been a bit of an overwhelming and nerve-wracking experience nonetheless.
Activation date was on Wednesday, December 23rd…the day before Christmas Eve. I had Alyssa, the girl who is doing her residency (there were other audiologists around if we needed them…she’s not licensed but we specifically requested her since she’s been so excellent…we really like her) activate me. I couldn’t sleep prior to my appointment because I was way too excited. Getting to Philly was a bit of a challenge since it was raining and incredibly foggy. We couldn’t take the train like we usually do. My mom and I had my dad drive us into Philly. Traffic was bad since it was right before the holiday. We ended up being over a half hour late, but fortunately Alyssa didn’t mind. I don’t think they had many appointments being so close to Christmas…
My appointment was supposed to be at 9:30, but we didn’t get there until after 10. It was a fairly quick appointment. I believe she just used the same settings as were on my first cochlear implant. She played a couple beeps first and had a chart for me to choose whether the beeps sounds too soft, soft but comfortable, comfortable, or too loud. This process took about 10 minutes or so. I found that most of them were in the comfortable but soft or just comfortable range.
Listening to the beeps!
Once we finished with the beeps we moved on to basic sounds, expressions, and words. My mom asked me if I could hear her and if she sounded like Mickey Mouse so I laughed and said “Yes”. Her voice was very squeaky, just as it was with my initial cochlear implant, but it began to normalize quickly. Alyssa’s always sounded pretty normal for some reason. I guess her voice isn’t quite as high as my mom’s is or something.
I didn’t do too bad with the basic sounds like “oooo” and “mmmm” and “eeee”. Some of the words I struggled with especially colors like “purple” and “orange”. Those two were the hardest for me. It will take some time to adjust to and for sounds to be normal. My own voice echoed back a lot and sounded weird, but not quite as weird as it did with my first implant. I am unsure if I like the volume or not. Everything sounds so robotic and strange now that it is hard to tell.
My mom sounded like Minnie Mouse at first…how could I not laugh?
I have the new Q90 processor, so that alone may take some getting used to. While it’s similar to the old Q70 I initially started with, it still has some differences that take some getting used to such as automatic programming. However, this one is a bit different than the one on my left ear. I am back to having 4 programs and switching to a new one each week as my mind begins to learn and process the sounds. The Aquacase is not yet programmed. Alyssa said I need to get used to the other sounds first so it’s not too overwhelming.
Alyssa recommended that I wear my new cochlear for my right ear as much as possible so that I can train it. I wasn’t home very much on the first day. After my appointment I went to the Amish market, grocery shopping at multiple stores, to my hairdresser’s for a haircut, out for dinner, and walmart, so I wore both cochlears out most of the day. However, whenever I was home I took the old cochlear off. Everything sounded a little more clear on the first day then my first cochlear did, but still pretty robotic and strange. My mom’s voice was less squeaky, but my dad’s sounded pretty robotic. Most things aren’t clear, they just kind of sound like distorted noise. Music sounds absolutely terrible, as can be expected. However, if it’s a song that I’m really familiar with it’s not too bad. I listened to some old-school Kelly Clarkson and it was tolerable since I was so familiar with the song.
I spent much more time at home on Christmas Eve and Christmas. Now that I’m single, I don’t have to worry about going to a lot of different people’s homes. My family and I always did Christmas together especially since my grandparents passed; we aren’t at all close with any members of our extended family. So I spent most of Christmas Eve and Christmas with just the new cochlear on except for when I went to church. Everything still sounds pretty weird. I can only watch TV wish captions. I can’t understand people talking much unless I read their lips. I can’t distinguish where sounds are coming from or what they are.
I notice a big difference when I wear them together though. My left ear with my old cochlear implant is by far my dominant ear right now and almost completely overpowers my newly implanted right ear when I have both of my cochlears on. Things are definitely much louder and a bit more clear. Music sounded better at church, and I was once again especially mesmerized by the sound of the violin. High-pitch songs that I previously struggled to really hear like Silent Night sound better. I also noticed I mispronounce a ton of words because I never really heard the proper way to say them…
I am a little unsure of the progress I am making in general with my new cochlear implant. I feel like with my first one I noticed a huge difference on the second and third days, but I am not sure I see that with my new cochlear implant. I’m on day 3 and everything still sounds totally weird, robotic, and distorted. Unless I have my initial cochlear implant on, I can’t really understand anyone speaking or any sounds. My mom stood behind me and clapped and I didn’t really hear it; I kind of ignored it because I thought it was just my dad making noise in the kitchen…
I spent at least 2 hours today working to train my ear. My mom sat down with me and did a word list. I got most of the words wrong, even when I read her lips. I am hearing some parts of the words. Like I can pick out that there’s a strong P sound or a un in in the word somewhere, but I can’t usually get the full word yet especially if I’m not lipreading.
I also used the Angel Sound program to train my ear today. I spent most of my time on Pure Tone Discrimination and worked my way up to level 2. I also worked a little bit on Environmental Sounds and am almost but not quite ready for Level 2 of that as well.
I tried switching from Program 1 to Program 2 today wondering if that would make things better, but ended up switching back to program 1 as I felt like I was getting too much power/sounds in program 2. I’m not sure I am quite ready for that.
I’m unsure how well I’m doing. I feel like the progress was easier and quicker with the first cochlear and that scares me. I feel like I’m failing at this, but even if this is all I get with the first one, it’s still an improvement, right?
Maybe it’s all in my head. It’s easy to look at my first cochlear and see it as all a success, but I didn’t get there overnight. It took me months to gain the ability to hear on the phone and music sounded terrible then, too. But then I think back about Larry and I’s date to Smithville last year. We did that on my 4th day of being activated and I did so well. I could hear him in the car, I could hear music playing (although I couldn’t tell what it was), rubber ducks squeaking, and hold a conversation at Applebees. I had a hearing aid in my other ear, but that didn’t give me clarity or do much of anything. If I take my left cochlear off, my right ear can’t do these things yet. Tomorrow will be day 4. I feel like I’m behind where I was last year, but shouldn’t this be easier?
I know that this is a process and will take time, but I’m still really scared. My anxiety is at an all-time high.I am just waiting for my breakthrough and hoping that it comes soon. I’ve struggled to sleep because I want to be awake to train my ear and see if things get better and I can’t help but worry, What if this never gets better? I know I have a tendency to be an impatient person and this takes a great deal of patience. I also know I need to pray to and trust God more. He’s already given me amazing gifts with my first cochlear implant, and he will with my second one, too, if I just learn to be patient.
This training my ear to hear thing with my 2nd cochlear implant may be proving to be a bit more of a challenge than I expected. It may not be all of the happiness I was hoping it would be at the moment, but it will get better in time. One thing I know for sure is this: I refuse to give up. I will continue to work on training my brain to hear the sounds until they are better than I ever could have imagined. God has given me the gift, now it’s my turn to work to use it as he intended me to do.