This week I read 1 Corinthians 14 and it made me think a lot about the history of American Sign Language actually. In 1 Corinthians 14, Paul is talking to the church of Corinth about speaking in tongues. He acknowledges the ability to speak in tongues as being a spiritual gift from God, however, he strongly urges the church of Corinth not to practice the speaking of tongues unless everyone can do it. Paul explains this by stating, “He that speaketh in an unknown tongue speaketh not unto men, but unto God: for no man understandeth him; howbeit in the spirit he speaketh mysteries.” Men that possess the spiritual gift of speaking in tongues can use it to speak to God, yes, but they shouldn’t use it to speak with the rest of the congregation because they won’t be able to understand him. When we enter the church it should be to honor and glorify God and to help our brothers and sisters and Christ to do the same and to better come to know God and his words. If we can’t even understand what the members of the body of Christ are saying then how can we really come to know God and learn at church, let alone properly worship him in his home?
Paul went so far as to suggest that speaking in tongues could be the equivalent of just making noise without understanding what that noise actually means in verses 7-11. Here he states:
And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle? So likewise ye, except ye utter by the tongue words easy to be understood, how shall it be known what is spoken? For ye shall speak into the air. There are, it may be, so many kinds of voices in the world, and none of them is without signification. Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me (1751).
Wow, definitely a lot of things going on in these verses! Let’s look at the first part of this first, verses 7-8:
“And even things without life giving sound, whether pipe or harp, except they give a distinction in the sounds, how shall it be known what is piped or harped? For if the trumpet give an uncertain sound, who shall prepare himself to the battle?”
A deaf person may never hear the sounds of a pipe, harp, or trumpet. You could blow that trumpet as hard as humanly possible and that deaf person may never prepare himself to battle if that’s all he has to go on because he’ll never know. To him, the sound of a trumpet is completely meaningless.
For me prior to getting my cochlear implant, I missed out on many sounds. I’ve discovered many of them since getting my cochlear implants, but every day I am also still learning more and more sounds. It’s not uncommon for me to jump a little in class as a train goes by or someone talks or fidgets or I hear an unknown sound. I’m constantly trying to define the source of the sound and what it means. This is what the congregation must’ve been like back in Paul’s time when they tried to understand what the speaker was saying when he spoke in tongues that they did not understand.
I also relate this to ASL. The Deaf community needs ASL so that they can understand what is being said in the church. To them, the verbal communication means nothing. They have no idea what the pastor is preaching without the use of ASL. They will never hear the gospel or understand the message that day. The pastor might as well be speaking in tongues because they’d never know otherwise. Here, Thomas Gallaudet’s arguments for using sign language in the church makes sense.
But hold that thought…
Thomas Gallaudet and the manualists didn’t just think that the use of sign language in the church would help the deaf to better understand sermons; they took it a step further. Gallaudet along with the other manualists felt that sign language would bring the deaf closer to God. In Tracy Morse’s dissertation, “Saving Grace: Religious Rhetoric in the Deaf Community,” she quotes Douglas Baynton’s Forbidden Signs when she says:
For manualists, this view was interpreted in Protestant terms: sign language was an original language and meant “closer to the Creation,” not inferiority (Baynton “Savages” 98). However, for oralists, sign language was associated with lower evolution or “inferior races” (Baynton Forbidden 9). Oralists made arguments that deaf students needed to learn spoken English and lip reading or they would be viewed as animals or savages (Morse 51).
Now, let’s look back to the scripture and focus on verse 11 which states, “Therefore if I know not the meaning of the voice, I shall be unto him that speaketh a barbarian, and he that speaketh shall be a barbarian unto me.
The word “barbarian” here is what stands out the most to me. Do you know who else really loves the word “barbarian”? Alexander Graham Bell who was NOT a manualist like Thomas Gallaudet, but rather an oralist that believed that the deaf needed to move away from sign language and instead learn to speak verbally and read lips and live in the hearing world.
So, what am I saying here? Do I think that this verse is saying sign language is barbaric? Absolutely not, but at the same time, it could be absolutely so. So it’s a yes and a no for me.
Here is what I think that verse is saying, or what the core message Paul has for the church of Corinth is:
We need to speak in a way that people can understand what we are saying in church so as to not cause confusion or anything that can inhibit man’s understanding of the gospel and man’s ability to honor and glorify the lord.
Back in the time of the church of Corinth, speaking in tongues was a barrier for people in the church because it might have benefited the person speaking it, but it did not benefit the church. Paul is calling for the unity of the church – everyone needs to unite as the body as Christ and work in a way that best serves God and not themselves and that involves speaking a universal language they can all understand.
What does this mean for the deaf in the church? Should they be forced to lip-read and practice the oral method? No. I think the deaf should have a right to hear the sermon in a way that is the most accessible to them. Many churches offer the hearing loop to help hard of hearing and deaf people to hear (depending on the degree of hearing loss of course). If a deaf person needs an interpreter, they should have access to it.
If the majority of church attendees are Deaf and rely on sign language, then perhaps that church should consider doing full sermons primarily in ASL, as that is what will benefit that church and help the attendees to learn and honor and glorify God the best.
We don’t have to worry too much about the speaking of tongues in modern day. 1 Corinthians 13:8 says, “Whether there be tongues they shall cease”. People cannot speak in tongues today (I acknowledge that many claim they do – I have my own feelings on that but I’ll be nice and go the route of “no comment” on that…). I think that whereas the church of Corinth had to worry about the speaking in tongues today our issue is more or less about what language or what style/tone to use in church. I think it all depends on the congregation and choosing what is the most accessible to your church goers.
Going back to the discussion on the deaf community…
In Baynton’s Forbidden Signs he explains how many oralists feared that by relying too heavily on sign language the deaf community would isolate themselves from the rest of the world. He stated:
Like their contemporaries in other fields of reform, oralists worried that the lives of people were diminished by being a part of such communities as the deaf community; they would not, it was feared, fully share in the life of the nation. The deaf community, like ethnic communities, narrowed the minds and outlooks of its members. “The individual must be one with race,” one wrote in words reminiscent of many other Progressive reformers “or he is virtually annihilated”; the chief curse of deafness was “apartness from the life of the world,” and it was just this that oralism was designed to remedy. Apartness was the darkness manualists redefined for a new world (Baynton 32).
Sign language was (and still is) very different from spoken English or any spoken language, really It’s different from what the majority is speaking and when people can’t speak our language, either they or we miss out. Isn’t this the same as what was going on in the church of Corinth in a way? Paul wanted to see the church of Corinth come together to honor, serve, and glorify the Lord and to unite as the body of Christ. Speaking in tongues was something very few church members could do that caused a separation or divide between those who could speak and understand it, and those who could not. It became a distraction that kept people from coming to know God.
Is sign language a distraction that keeps the deaf from doing things in their daily lives? It is obvious that it causes a divide from the hearing and the deaf worlds. In the church, it can make things better for the deaf and I can see how it can strengthen their personal relationships with God, but if we only signed and didn’t speak spoken English, the rest of the congregation would suffer. I don’t see sign language as being a form of language that brings a person closer to God in the sense of it’s a superior or holier language than standard English. I think it’s just another language that for some is their primary and therefore the best and for others is just another language in the world that exists but one they don’t partake in or use in their daily lives.
Hey guys! I’m back! I apologize for the lack of updates lately. I have been meaning to make this post for a couple of weeks but I’ve been crazy busy with writing my book, God Granted Me Hearing (which yes, is based on this blog and my cochlear implant experience!) :). Also, I haven’t had a whole lot of news lately. My 2nd cochlear implant has been progressing well. I saw Alyssa at Jefferson around a month ago and everything was good but she didn’t test me again so there’s no update on that end.
I do have something else to share with you all today though — what it’s like to get caught in the rain with a cochlear implant. I’ve written in the past about how getting caught in the rain was one of the things I was most looking forward to doing after getting my cochlear implant and I also wrote about what it was like to go swimming with a cochlear implant, but up until a few weeks ago, I never actually seriously got caught in the rain with a cochlear implant.
First let me say this was completely UNPLANNED. I live in Washington Township and I love to take walks. I knew that a thunder storm was on the horizon, but when I first headed out for the day the skies were still clear. It was one of the first days of spring so for once the weather was warm. I didn’t want to walk to the gym like I normally do because I thought it might be too far of a walk and I wasn’t sure if I’d make it back in time to avoid the storm. Instead I decided to take advantage of the fact that all of the basketball courts at the high school I live across were empty. I’ve always loved to play basketball but I don’t get the opportunity to play nearly as much as I’d like. So I grabbed my bag with a couple of bottles of water, my jump rope (don’t ask…), my basketball, and headed out.
I wore my aqua cases for this trip. I didn’t wear the aqua cases just because of the pending storm, but to protect against sweat as well. I made the mistake when I got my first cochlear implant of going to the gym without the aqua case and almost broke it from all of the sweat and moisture I got in it. Ever since that incident I’ve made a point to wear my aqua cases every time I go to the gym, work out, or even go for a walk or do anything that could produce a sweat. I’d rather be safe than sorry.
It took me awhile to cross the street that afternoon. Traffic was busy in Washington Township, as always. When I finally managed to cross the street and make it to the highs school I took out my jump rope and began using it. I’ve had my jump rope for over a year and never used it before. I heard it was good exercise which is precisely why I bought it, but I always shied away from using it fearing I’d look like an idiot, which I totally did, but it was okay because no one was around to laugh at me. I still didn’t have quite enough magnets in my headpiece on the cochlear for my right ear. I think the placement for that one is different than on my left which makes it not stick as well. When I used my jumprope it kept knocking my headpiece off until finally I gave up on it and took it off and put it in my bag.
I only jumped rope for about 5 minutes or so before switching to basketball. I know it doesn’t sound like a lot, but when you haven’t done it for 20 years, jumping rope is really intense! Plus I noticed the clouds were beginning to look a bit heavy so I wanted to stop and make sure I got plenty of basketball time in before it rained on my parade. I put my cochlear back on for this. It works out better for me than the jump roping did, but it still kept coming off my head whenever I jumped so I ended up taking it off again and putting it in my bag.
I played basketball for about a half hour or so before the rain began. I think this was my first time playing basketball with my cochlear implants. I noticed I was much more relaxed. I didn’t have to worry as much about whether or not any cars were coming by the parking lot or if there were joggers running through or someone trying to talk to me. I was able to hear everything around me (and also there wasn’t many people around anyway). It was very peaceful and fun.
After about a half hour I felt a raindrop hit my head. “Okay, that’s my signal to pack it up”, I said to myself. Within seconds of saying that, I found myself in a torrential downpour. The rain came down at the speed of light. I ran to my bag to check my cochlear and put it back on my head and to check that my phone, which was in my bag, was still working. Everything seemed good. Then I grabbed my bag, my ball, and headed on home.
But I couldn’t simply go home; I had to walk back which meant walking through the torrential downpour and trying to cross the dreaded intersection again. It also meant having to pass a bank and drug store while sporting soaking wet clothes and hair and dribbling a basketball. That’s not something you see everyday…
IT. WAS. FUN. SOOOOO MUCH FUN.
This is something I could never do before with my hearing aids. My hearing aids would have broken in seconds and I would’ve been having a major panic/anxiety account over getting caught in a torrential downpour with them. And my mother would want to kill me for destroying my $3,000+ uninsured devices.
But with my aqua cases on, my cochlear implants were 100% waterproof. I had nothing at all to worry about.
I dribbled my ball through the rain until it began to fill with the water and become too heavy to bounce. Then I carried it. I watched the people flee the bank to their cars as if they were afraid the rain might make them melt. As I waited at the crosswalk by the drug store I noticed the people in their cars looked at me like I was some kind of a freak because I was standing at a crosswalk for a busy intersection with soaking wet hair and clothes, a basketball, and the biggest smile on my face.
I didn’t care about being wet. I didn’t care that my clothes felt like they weighed 1,000 pounds from the rain. I didn’t care about my basketball session being cut short. I didn’t care about the fact that I was getting pretty cold. I didn’t even care about the fact that my contacts were getting blurry from being drenched in rain.
I was ecstatic. I was having one of the best days of my life.
When I got home I didn’t have to worry about anything being broken. I did take my cochlears off and put the aqua case parts and those specific batteries in the dryer just to be on the safe side, but I didn’t really have to. There was no panic attack. I didn’t have to take out the hair dryer to try to air them out and to get them to work or nothing at all.
I simply did what any normal person would do…I changed out of my wet clothes, got a hot bath and made a hot cup of coffee to warm up, and went on with my life.
You don’t realize how much these little things in life like getting caught in the rain can really mean to a person until they get to not just experience them, but ENJOY them without any kind of fear at all, for the first time ever. It’s surreal.
Getting caught in the rain with my cochlear implants may not have been everything I hoped it would be. Larry and I have been broken up for over 6 months now. There’s no one new in my life to give me that Notebook-style kiss in the rain. I didn’t even have anyone there to have a conversation with or to go puddle jumping with.
But you know what? It wasn’t what I wanted it to be because it was BETTER.
It was all my joy for the taking. It was all on me. It was all about me, having my moment. I didn’t need anyone else to be there for me. I just needed that rain and to be off in my own little world.
It was one of the best days of 2016 thus far.
I can’t wait to get caught in the rain again sometime soon.
A few weeks ago I went to a cochlear implant support group. I’ve had some mixed experiences with these support groups. After attending my first one, I vowed I’d never come back. However, I since changed my mind and even had some pretty good experiences since then like the time I went to the cochlear implant support group about hearing preservation (and met the incredibly attractive Dr. Pelosi…but that’s another story ;)).
Since they have been getting better, I decided to make an effort to go to them on a more regular basis. The topic for the January 7, 2016 meeting was on training your implanted ear (or in my case, ears). Med-El was sponsoring the meeting and presenting and discussing their new training cds and books. Since I was just recently implanted with my second cochlear implant, I thought this would be a great meeting for me to attend.
I’ve always been a little skeptical of Med-EL to be completely honest. When it came to choosing a cochlear implant brand I narrowed my choices between Cochlear and Advanced Bionics. Med-EL was the only brand I was sure I DID NOT want because I felt they were too outdated. I always leaned more towards Advanced Bionics. Jefferson didn’t give me a choice so I was glad they chose Advanced Bionics for me, naturally, as it’s what I would’ve chosen anyway.
I had some faith in Med-El for this meeting though. I mean, aren’t all speech therapy training supplies essentially the same? How could you mess that up?
The presentation was given by a woman who worked for Med-El and who I believe was also a licensed audiologist at John Hopkins. She had one of her patients with her who was upgraded to a new processor and/or had a new mapping done that morning. They went through some words and she tried to demonstrate how the cochlear implant is a process and it’s not perfect, he might still mess up. It was a nice presentation, pretty accurate.
She also took some time to go over the new Med-El training book, cds, and online resources. She had a copy of the book. It was very expensive to buy (like $70) but said she’d leave a copy with the group and that we could make copies if we wanted, which my mom and I ultimately did. The book has been incredibly helpful/beneficial for us. That alone made going to this meeting worth it.
Towards the end of the meeting she went back to her earlier point on how cochlear implants help deaf individuals, but it’s not a miracle cure. We’re still deaf. She then used one single word to refer to us all that ruined her entire presentation for me:
She told us we were all handicapped.
I was enraged. We are DEAF but DEAFinitely NOT Handicapped!!!!!!!!!!!!!!!!
I didn’t just let this go, either. I made sure to talk to her at the end of the presentation to let her know I didn’t like that she told us we were handicapped. She apologized and said she knew and that she was really referring to children with multiple disabilities like those who are deaf-blind, deaf and autistic, etc.
It was a nice try, but I didn’t buy it because there wasn’t a single kid there and 90% of the adults lost their hearing later in life. I’m pretty sure none of us had multiple disabilities…it was just her cover.
There are few things in life that infuriate me more than being referred to as being handicapped because I am far from being handicapped. Most of us deaf individuals are always labeled as being handicapped and for most of us that couldn’t be further from the truth.
Deaf individuals like myself face a lot of hardships and much discrimination. We have to fight on a daily basis to have our voices heard and to be viewed as being equal to our hearing counterparts. We get denied employment, entrance into public schools and universities, and most of society tries to exclude us on the grounds that we are “deaf and dumb”.
I am a lot of things in life. I am far from perfect. I have done dumb things in life, but I am not a dumb person and I am far from being handicapped. I have NEVER once allowed my hearing loss to get in the way of my success in life.
I’m really not that much different from a hearing person. I don’t know ASL. I used to lipread (I still do, but I don’t HAVE to anymore). I speak pretty clearly. While I did attend speech therapy as a kid, my speech has never been that bad to begin with. I went to public schools growing up (which my parents and I had to fight very hard for as the school thought I was handicapped when in reality I simply couldn’t hear…). I played on many sports teams and was involved in many clubs. I attended a public university and earned an associate’s degree and later two bachelor’s degrees. Now I am employed for a digital marketing agency as a manager. I have had this job for 2 and a half years. I speak on the phone on a regular basis for work. I have no interpreters or special accommodations. I am really no different from a hearing person.
Society is constantly trying to put a label on deaf individuals and make us feel like we are broken or flawed or not worthy of the same opportunities as hearing individuals. “Handicapped” is far from being an innocent mistake or simply “just a word” used to describe us; it’s become a nice way of telling us that we’re “not worthy”, “not normal”, or “not good enough”.
Deaf individuals fight the stigma and the misinformation and all of these stereotypes on a daily basis. It’s rarely an easy fight. And one thing we absolutely don’t need is audiologists and representatives from cochlear implant and/or hearing aid companies fighting against us and feeding into the stigmas and stereotypes.
These individuals should be fighting alongside of us. They should understand us more than anyone and want to work to show people how the deaf really aren’t that different than the hearing.
Also, as is the case for this woman from Med-El, if you’re trying to sell us cochlear implants, you should speak in a way that gives us hope. Training your cochlear implant and your ear to hear is no easy task, as you’ve seen in my last blog post. It can be frustrating and discouraging. Labeling us as handicapped isn’t going to help matters at all, but it could make things worst. When you call us handicapped you remind us that we’re different, but if we have a cochlear implant it’s most likely because we want to hear and be like those that can hear, at least to an extent. Calling us handicapped can put a damper on all of that because you’re saying we’re different, we’re not able of doing something the hearing can do — we can’t hear. But the goal of the cochlear implant is to gives us what we don’t have that they do have — the ability to hear! Calling us handicapped is basically a nice way of telling us to not work hard and to just give up because we’ll never be like them anyway.
The idea that the deaf are handicapped is a lie. It’s a myth. It’s a diversion of the truth. It is not at all right.
To quote King Jordan, the former president of the famous deaf university, Gallaudet, “The Deaf can do anything but hear.”
We’re deaf, yes, but DEAFinitely NOT handicapped.
Got that, Med-El? Good.
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.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!