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! 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.
I know what you’re thinking…
I thought you said your first cochlear implant support group meeting would be your last.
And you’re right, I did.
Back in May I went to my first cochlear implant support group when they did a discussion on cochlear implants and dementia. It was extremely depressing and I felt the whole atmosphere to be rather negative. I vowed I’d never go again.
Well, things happen. I kind of lied.
It’s been a weird week.
I broke up with my boyfriend. If you read my blog on a regular basis, you’ll know I loved him very much. I still do. I think a part of me always will. I’m not going to go into the details about that here. Let’s just say it happened, it hurts like hell, and I needed to get out of the house.
A friend of mine, Wayne, helps to run the Cochlear Implant Support groups for the Haddonfield area (the ones closest to my home). We are friends on Facebook and Wayne and I talk on a regular basis. He knew that I had just broken up with my boyfriend and was really hurting, so he told me I should come to the next support group. He told me it would do me good to get out of the house and “you never know who you’ll meet” (I mentioned on Facebook how I needed to make friends. My boyfriend was not only my best friend, he was my only friend. Breaking up with him was more than just breaking up with a boyfriend, it was breaking up with my best friend, too). I kind of felt obligated to go after that. Plus, I figured it was a welcome distraction. Sure beats staying at home, feeling sad, and crying myself to sleep anyway.
The topic was actually pretty interesting. It was on hearing preservation after the cochlear implant surgery. You may remember me mentioning previously that I still had the same amount of hearing left in my ear post-surgery. I was interested in hearing what they’d say about that since the topic was definitely pretty relevant to me this time around.
Dr. Pelosi, assistant professor and otolaryngologist at Jefferson University, was the one doing the presentation. I have heard quite a bit about Dr. Pelosi especially when I did my early research for a cochlear implant surgeon. My first impression is what any newly single 20-something year old girl would think, “He’s really hot”.
Hottest doctor, ever?
But of course looks are not everything and I have a really weird thing with people who are highly physical attractive. I assume most highly attractive people are jerks. I’m not outright saying I thought Dr. Pelosi was a jerk. I didn’t think that at all, he seemed like a nice guy. I did however get the impression that he was a little coincited. But he was a nice guy and he was smart.
Dr. Pelosi made a lot of interesting points about hearing preservation post-cochlear implant surgery. There were many things I didn’t know like how the size and shape of the electrodes may play a role in hearing preservation. Also, the speed at which they insert the electrodes can have an impact. Dr. Pelosi said that thinner curved electrodes inserted more slowly may help with post-implantion hearing preservation as opposed to thicker, straighter electrodes that are inserted more rapidly. This is because there is a nerve by the cochlea that the electrodes are inserted near. Ideally, surgeons want to be as gentle as possible when inserting the electrodes so that they don’t hit that nerve. Hitting the nerve is what can cause a loss of residual hearing. With the thin, curved electrodes inserted slowly, there is a smaller chance of tearing or otherwise damaging that nerve.
The only thing I didn’t really like with Dr. Pelosi’s presentation was that he used a lot of really technical terms and big words. I felt like some of that was because Dr. Pelosi is a very young doctor — much younger than most of the people at the support group — and he may have done that to try to prove himself to them. But I would have rather he used less complex language that is easier to understand. I think had my surgeon who is older and more experienced, Dr. Wilcox, done the presentation I would have understood it a bit better.
At the end of the presentation a lot of people asked questions. I liked that the group of people were mostly different from the group that attended the first support group meeting I went to. They were more interested and less negative about cochlear implants. Most of the questions were about the electrodes and the hybrid cochlear implant which Dr. Pelosi also touched on. I realized that I didn’t know how many electrodes I was inserted with, so I asked Dr. Pelosi if that mattered. He told me it didn’t; all that mattered was that it worked and that I knew what kind of device I had which I did. I kind of figured that much.
Some of the people asked beyond stupid questions that I had to try not to laugh at. The whole “there are no stupid questions” can really be a lie sometimes. The stupidest question I heard was from a guy wanting to know why they couldn’t tune his cochlear implant electrodes to match that of a piano or something. Obviously he was a musician who lost his hearing later in life. He swore he knew exactly which sounds he was and wasn’t hearing and how it should sound.
Maybe I am being biased or unfair because I’m not a musician and I don’t know much about musical tones or piano keys, but this doesn’t seem right to me at all. No, you don’t know what you are or aren’t hearing. You’re learning the sounds. You can’t just pick and choose which sounds you do or don’t hear or receive. It doesn’t work like that.The whole cochlear implant thing is a process and you’ll discover new sounds over time.You can’t just wake up one day and be like “I want to hear this piano key today and this one tomorrow”. I feel like that should be common sense, which I felt this guy obviously didn’t have. Based on the look on the faces of others who attended the meeting and even Dr. Pelosi (who remained extremely professional and didn’t outright laugh in the guy’s face), they agreed.
After the meeting I made a point to talk to some people and connect with them. I won’t lie; half the reason I did this was for networking purposes…. I am writing a book about my experience, afterall! I need to build my connections so I can sell my book once I finish writing it and have it published. But I did genuinely enjoy talking to the people. They were all much older than me and most of them had very different stories. A lot of them lost their hearing later in life or had an illness that wiped out their hearing. I’m not sure any of them were born deaf or hard of hearing like I was. I swapped stories with them and also told one woman who was about to be activated good luck and not to be afraid. I reminded her that she might not like the way things sound initially, but if she worked with it, it would get better.
One thing I wish though is that more people my age would come out to these events. My mom told me that maybe I can help work on getting people there or maybe I can even look into starting my own group for people my age. I know that I’m not the only deaf or hard of hearing 20-something year old in NJ. I’m frequently told that deaf/hoh individuals are getting younger. I’ve seen them, too. When I worked at Walmart I saw many kids with cochlear implants. I always thought that was pretty cool. I also talked to a lot of people around town who have told me they have kids with cochlear implants. I think the reason why they don’t come to meetings or support groups is that they feel ashamed by it — they want to hide the fact that they even have an implant. That is sad to me. There is no reason to be ashamed. My cochlear implant is the best thing that ever happened to me. I talk about it all the time and I flaunt it because it makes me proud! I was given an incredible gift from God — the gift of hearing. I want everyone to know it. I just need to get more people my age to see things like that. I’ve always been deaf and loud, but maybe now I need to get a little louder.
Reasons I need to come up with a new nickname for Larry: “Knight in Shining Armor” is too long to use for bowling….
My boyfriend, Larry swears we’ve been bowling since I got my cochlear. But I know, for a fact, that he is wrong (“I know for a fact” is my catchphrase by the way :)). I double checked this blog — nope. No mention of going bowling with a cochlear implant. I also know, for a fact, that that is something I would’ve blogged about before if it happened.
Actually, come to think of it, if you consider what we did during our Disney vacation at that cool McDonalds to be “bowling”, then Larry would be right..but nope, that doesn’t count (sorry, Larry).
Sorry, Larry…this was a lot of fun, but it doesn’t count as “real” bowling…
Anyway, back to the point. My boyfriend and I went bowling together on August 9th. Larry comes from a family of bowlers. He is a huge bowling nerd and I love to make fun of him for it. He’s one of those guys with his own shoes (which are actually broken…), bowling balls (yes, that is plural…one of those he managed to break as well. Larry…what’s wrong with you? Breaking all of your equipment…), the whole 9 yards. Yet, despite him coming from a family of bowlers, we don’t really go bowling all that much. I blame it on the fact that bowling’s gotten a bit expensive over the years and also Larry’s a truck driver — he’s home about twice a month, max, which doesn’t leave a lot of room for us to see each other, let alone bowl together.
My boyfriend is my best friend. Not only is he my best friend, he’s pretty much my only friend right now. Or at least, my only “real” friend that I make an effort to see in real life instead of just talking to on Facebook or Twitter (I know that sounds kind of sad, but it is what it is). When he’s not home it’s not like I go out with other friends and do things like bowling.
When you’re the best of friends having so much fun together…
So, prior to us going bowling on August 9th, the last time we went bowling was before my surgery. Actually, to be precise, it was November 15, 2014…two days prior to receiving my implant.
Bowling with Larry is always fun. Like I said, he is a bowling nerd. I get a kick out of just watching him bowl. He’s got the whole “old school grandpa” form and everything. I like to tease him and tell him it looks like he’s dancing when he’s bowling because it really does.
Unlike Larry, I am not blessed with impressive bowling skills. Actually, just the opposite. If I bowl a 60 then I’ve had a great time. 35 is about my average. The sad part? I actually took a college course on bowling…
The few times we went bowling before Larry always tried to help me out, but it was difficult. First, as we already established, I really suck at bowling. Second, bowling alleys are VERY LOUD. Naturally. You have the balls, the pins, the music, people talking, the workers on the loud speakers, everything. Prior to getting my cochlear, everything just sounded like loud noise. I couldn’t distinguish any of it.
Larry and I really couldn’t have a conversation at the bowling alley prior to me getting my implant because I couldn’t hear him at all. If he wanted to tell me something he had to text me even though I was right there with him (and yes, that did get very annoying). When he tried to help me out with my bowling he had to rely a lot on hand singles and using his body to show me where to stand, how to hold and throw the ball. Yes, he’d have to do this even if I could have heard, but not quite to this extent. I never learned sign language, but this was like Larry and I creating our own form of it as we went along.
I think it’s safe to say that bowling with my cochlear implant was much more fun that bowling without it.
None of these problems with noise were prevalent at all, and we went on one of the loudest possible nights to go bowling…not only was it a Saturday night, but it was actually National Bowling Day. Just like any normal bowling alley would do, the one we went to (Brunswick in Turnersville) had quite a bit of a celebration for it. To be more specific, they actually decided to throw a bowling party that night.
National Bowling Day goodies that we won from cheating because of course…
When we went in to buy our games and get our shoes I had a nice conversation with one of the workers. He was an old guy and I’ve seen him there many times before. I always thought he was a very nice guy. I was amazed at how well I could hear him despite all of the background noise. I don’t think I have ever actually really been able to hear the people at the bowling alley like that before. I pretty much always just told Larry my shoe size and any other information I needed ahead of time so he could answer for me. This time I could hear the guy well, but he couldn’t hear me. It was pretty weird being on the flip side of it. The guy told me that he lost some of his hearing and couldn’t hear very well since he had a stroke. I explained to him that I was born hearing impaired and have lived all my life without hearing so I understood what it was like. Conversations like that are always nice to have with people.
After I got my shoes and Larry got his on and his bowl out we were able to get started with our night of bowling. One of the first things I noticed was that I could hear the music. I always knew that bowling alleys played music of course, but it’s been many many years since I’ve actually been able to hear that music and understand it, let along sing along with it. The last couple of times that Larry and I have went bowling today I remember feeling a bit jealous because he could hear the music and understand it and I couldn’t. He didn’t try to make me jealous, of course, but I couldn’t help but feel that way. He was sad for me. He would point out which song was playing or say how he liked it and would ask me if I could hear it but the answer was always “no”. It felt so nice to be able to hear this night and enjoy it. It was the first small victory of the night.
He’s smiling like that because I was tickling him…and then he started to tickle me…so we ruined this picture too.
When we got our shoes the people at the counter gave us a sheet of paper with some questions on it for National Bowling Day. They were having a contest that people could enter to win some prizes. The contest was really just a little quiz with some questions about bowling like “How long are bowling lanes?” and some questions about basic bowling terminology. Larry knew the answer to most of them, and of course we cheated and googled the ones we didn’t know. It was a lot of fun working through it together. As we discussed the questions and our answers together I paused for a moment and said, “Wow, I can hear you. I don’t think we’ve been bowling since I got my cochlear”. Larry said we have, but I knew we haven’t (and I was right so HA!). It was a nice feeling!
It took us way too long to get this normal picture…and I almost kind of ruined it by laughing.
Larry was able to “help” me with my bowling quite a bit too. And I say “help” because I am beyond the ability of being helped when it comes to bowling lol. He definitely tried though and it was a lot easier since I could hear him. I didn’t have to constantly say “what?” or say “I can’t hear you”.
We were at the bowling alley for several hours so we ordered a pizza to split for dinner. That was another interesting experience for me. Not only was I able to hear the worker taking our order, but I could hear her far better than she could hear him. I’ll be honest and admit that I actually was getting frustrated with her for not being able to hear me. I hate when I get frustrated at people for not being able to hear me especially since I know all too well how mad I used to get for not hearing people and then having them get mad at me for it. It was definitely an interesting feeling to be on the opposite side of that though…I never thought I’d see that day come.
I don’t think that bowling is something many people think of as needing to hear for, but you’d be surprised by how much more enjoyable it is when you can hear. Not only that, but it’s more enjoyable when you can hear the sounds for what they are and distinguish between them all rather than just hearing a bunch of loud noise. It’s yet another activity I can add to the list of things that have been more enjoyable since getting my implant.
Yesterday I had another appointment with my audiologist, Louisa at Jefferson University Hospital. This was for the second half of her music research study. It was the exact same test as I took three weeks earlier except this time I was already exposed to the new music settings on my cochlear. I must admit, however, that I NEVER use the music settings. I always just keep my cochlear on program 1 as that has always been comfortable for me, even when listening to music. Plus, switching programs back and forth can be a little annoying.
Despite not actually practicing with the new music program like I was supposed to, I feel that I did much better this time around. The music did seem a lot clearer. I think the pitches were about the same, but that didn’t strike me as being too difficult in the initial test anyway. I noticed a big difference with the melodies. They were still pretty hard, but I could identify some of them and I have a feeling I got a lot more of them right this time around. The instruments were easier to identify as well. I especially found it easy to pick out which one was the guitar and I could tell the difference between the brass instruments and string instruments pretty well.
After I finished the test I had to answer more questions. They were the same as the ones I answered three weeks ago but not as many. It was just to see how things changed since getting the new music program. Things really didn’t change at all for me though.
While I was answering the questions Louisa told me about another cochlear implant research study that Advanced Bionics will be doing at their headquarters in Valencia soon. This one is for implanted individuals who did not lose their residual hearing. You may remember from my previous post from a few months back that when they tested me post-activation, I still had some of my residual hearing. Louisa did a quick test with me again after I finished the research study questions just to make sure nothing’s changed, and sure enough, I still had my residual hearing and it was the same as when they tested me a few months back. Louisa forwarded my information to Advanced Bionics and they may be contacting me soon about the study if they feel I am qualified for it. If I do get in for it they will be flying me to their headquarters in California free of charge. I never been to California before but have always wanted to go, so needless to say I am pretty excited about it all.
Before I left my appointment I also talked to Louisa a little bit about the AquaCase. I told her that I was using it and even recently used it to go swimming, but I was having a little bit of trouble getting used to it. It sounded a little unclear at times and reminded me of how I had to get used to things when I was first activated. She said that was weird and should not be the case. She also asked me if I was using program 5. I completely forgot about program 5! I always just kept it on program 1. She explained that program 5 was designed specifically for the AquaCase. When you wear the AquaCase, the processor sits in the case away from your ear. For this reason, having the mic on in the processor becomes much less important. Instead, it is far more important to have the microphone in the headpiece on. Program 5 turns off the headpiece in the processor and instead amplifies the one in the headpiece.
Later than night when I got home I gave program 5 on the AquaCase a try. I was surprised by how much better I could hear! I wore it to walk to the gym and worked out in the gym with it on and then after I got my shower and my hair was wet, I kept it on. It definitely made for a more enjoyable walk and a more enjoyable work out. It was really no different than my regular cochlear without the AquaCase. Now I can’t wait to go swimming again! I can’t believe I missed this all before! That just further goes to show you how intricate, detailed, and complex the cochlear truly can be. It’s an amazing piece of technology capable of doing so much that sometimes it can take a bit to fully learn how to use it to get the most out of it. But when you do learn things it’s almost always extremely beneficial. Even after 6 months, my cochlear implant still continues to amaze me with all it does for me.
Yesterday I gushed about my boyfriend and how supportive he’s been about my cochlear implant and how my cochlear implant strengthened my relationship with him. My mom read it like she always does. After all, they always say your mom will always be your biggest fan. When it comes to my writing and pretty much everything I do in my life, that always proves to be true.
If it wasn’t for my mom, I never would have gotten my cochlear implant. That is the 100% truth behind it all.
I’ve known about cochlear implant for years and I’ve always been adamantly against them. I always swore that I would never get them. This is due in large part of being told the wrong information which quite frankly made me terrified of them.
But one day, everything changed.
They say that everything happens for a reason, and this just goes to prove that.
I work for a digital marketing agency, WebiMax. Back in September we were in the process of moving to our new Camden office located on the Waterfront. However, before we were able to move to this final location, we had a small temporary space located on Federal Street. It was too small for all of the employees to work in the office on the same days, so a lot of us worked from home on a regularly basis until our final move to the Waterfront was complete.
Our old, original office was located in Mount Laurel. I had a hearing appointment about once every 2 months or so. At the time, I would work at WebiMax from 7:30-3:30 every day. Their was a Miracle Ear located in Cherry Hill, so as long as I got done work on time making my 4pm or 4:30pm appointments wasn’t much of a problem.
RIP Mount Laurel office…
Coming to the Cherry Hill office became a routine for me. The Miracle Ear located in the Turnersville Walmart was much closer to my home, but this definitely worked better with my work schedule. However, when I was working at home, things changed. I live in Washington Township. Going all the way to Cherry Hill for a hearing appointment just to get my plastic tubes changed didn’t seem practical, especially when I could just go to to one in Turnersville that was 15 minutes away.
I got used to seeing my audiologist at the time, Mindy. She became like a friend to me. I always enjoyed seeing her. It was a risk going to the Turnersville Miracle Ear because Mindy wouldn’t be there and we didn’t have much success with other audiologists prior to meeting Mindy (you’d be surprised by how hard it is to find a good audiologist…). But we figured it was just a piece of plastic that I needed on my hearing aids. Really quite simple and pretty much impossible to mess up. Anyone would do.
So we went to the Turnersville Miracle Ear that day and met a new audiologist. Her name was Sherry. I didn’t know if I liked Sherry when I first met her. She was a lot different from Mindy. Mindy was always very bubbly and talkative. Sherry was very professional, but didn’t have the same bubbly personality at all. Sherry was kind of hard to read.
As Sherry was replacing my tubes, my mom asked her a question. She said, “I want to ask you a question. I don’t really know you and you’re not my daughter’s usual audiologist. I may never even see you again. So tell me honestly, what do you think of the Clearvation hearing aids? My daughter has been looking into them and saving up for them. We’re told they are super hearing aids, but we were told that about her last pair as well and they didn’t seem to make that much of a difference. We were pretty disappointed. Do you honestly feel that these hearing aids will make a difference?
Sherry didn’t say anything for a couple of minutes. Instead, she held her breath and made a strange face that said it all.
“You don’t need to say anything. Your face says it all”, was my mom’s exact words.
Sherry then began to explain how hearing aids, no matter which one we choose, would not really help me. My hearing was so bad and my clarity was so non-existent, that no hearing aid would really be able to benefit me. Sure, they could amplify sound, but hearing aids don’t really offer clarity. She went on to explain that the only thing that could give me the clarity was a cochlear implant.
My mom and I went on to express the fears we had. The main fear we had was that cochlear implants required brain surgery. We were also told they were only for people with absolutely no hearing. I had around a 95-97% hearing loss, so I was legally deaf and fairly close to being 100% deaf, but I still had SOME hearing and I made it work for me. I thought that disqualified me from being a candidate for a cochlear implant.
“You guys got a lot of research and homework to do”, was Sherry’s response.
That night, the cochlear implant process really began. My mom and I researched and read article after article about what cochlear implants are, who the ideal candidate is, how they work, where to get one, and really everything we could get our hands on. I took a step further and decided I wanted to talk to people who had it done. Researches can say all kinds of great things in their articles, but unless you’ve actually went through and did it, you wouldn’t know what it was really like.
I turned to Facebook and Instagram (hey, I work in the field of social media, where else did you expect me to look?) I found a couple of Facebook groups and Instagram users who had cochlear implants or were considering getting one. I asked many questions and read through many forums. It didn’t take me long to realize that I was considered an “ideal candidate” and that this is something that would greatly benefit my life. I knew it was something I wanted and needed to do, and both my mom and my dad agreed.
My mom got the ball rolling right away. Within a couple of weeks I had my first doctor’s appointment with Dr. Skinhead (okay I have no idea what this doctor’s real name is but I always refer to him as Dr. Skinhead because he shaves every inch of hair from his head and his head is really bald and shiny and therefore he looks like a skinhead….). Dr. Skinhead is an ENT in Woodbury and quite possibly the best around. I saw him once before when my former audiologist accidentally cut a piece of plastic tubing too close to my ear and got it stuck. He removed it. So I knew he was a pretty good guy. Anyway we went there to just talk to him about how I was considering getting a cochlear implant. We had my most recent hearing test sent to him and he looked at my ears. He said he wasn’t quite qualified to give us a definite answer, but he didn’t see any reason why I wouldn’t be a candidate. That was our first yes, and my mom couldn’t have been more excited for me.
Within a week later we had our second doctor’s appointment booked. This one was just with my family doctor, Dr. Millstein. I needed a doctor’s referral before seeing most surgeons for consulting, so that’s what this was all about. He said I was healthy and their was nothing physically wrong with me. He was very concerned that I might get cervical cancer if I don’t get some pretty unnecessary shots….but that’s a whole nother story I don’t wish to further elaborate on. Point is, he said physically he didn’t see anything that would prevent me from getting a cochlear implant and he gave me referrals to see the surgeons.
We were then ready to make one of the biggest steps: meeting with surgeons. My mom did some research and identified two in the area that seemed like great surgeons: Dr.Bigelow at UPenn and Dr. Wilcox at Jefferson. We made an appointment with both of them, Dr. Wilcox being the first. Our first consulting appointment was in October. Two weeks later was our appointment with Dr. Bigelow.
We still had a few weeks before our first consulting appointment, but that didn’t mean we got a break. Not at all. My mom never took a break from my hearing. We still had a few more missions to accomplish before that appointment. Prior to my consulting appointment, I had to have both an MRI and a CT Scan performed to ensure there was nothing wrong with my ears that could prevent me from getting a cochlear implant. My mom scheduled both tests for the same day. The tests were very long and my mom had to leave work early to take me to them, but she did them without complaint. She helped me a lot. I couldn’t hear the doctors at all since I had to take my hearing aids out for the tests, so my mom was very helpful in acting as a translator and helping me to know exactly what I needed to do for these tests.
During my first consulting appointment with Dr. Wilcox, he confirmed what we pretty much already knew: there was nothing structurally wrong with my ears. He said there was no reason I wouldn’t be a candidate for a cochlear implant. He also answered all of our questions. Between my mom and myself we easily had over 30 questions for him and he answered each one very thoroughly. He gave us the green light to move forward — but he said we still had one more step— we needed to meet with one of their audiologists for more testing including a written test and hearing tests.
Scheduling the appointments with the audiologists was easy. It was just a manner of meeting with a receptionist before we left. I had two appointments with them. One test tested how well I hear with my hearing aids and the other without. They really needed to see how much the hearing aids were benefiting me (which proved to pretty much be not at all) and what I’d gain from a cochlear. After just the first test/appointment the audiologist said “Now is definitely the time for you to be considering a cochlear”. Whereas my mom and I would normally be pretty depressed by my hearing test results, that day we celebrated because we knew it was bringing us one step closer to our ultimate goal of getting me my cochlear and me being able to finally hear.
On the last appointment I had to answer some written questions as well. It was kind of like a psychological evaluation. They had to make sure I had realistic expectations and that I would work with my cochlear. I passed that with no problem. They actually said that if anything my expectations were too low. Once this was all complete, it was time to meet with Dr. Wilcox again and schedule the surgery.
We scheduled the surgery within two weeks from the appointment on November 17, 2013. We could not believe how soon it was. It wasn’t even a month from our initial meeting with Dr. Wilcox. Everything with it happened so quickly thanks to my mom being so proactive with it all. None of this ever could have happened without the help from my mom.
The couple of weeks leading up to my surgery were pretty hard, more so for my mom than for me. The things no one tells you about getting a cochlear implant is that it’s a bit overwhelming and terrifying, especially right before you go under the knife. There were many times when my mom broke down in tears because she was so afraid it wouldn’t work, I’d lose the little hearing I did have, and she felt if this did happen she’d be to blame since she encouraged me to go through with it. During these times going to church helped a lot. I remember one time in particular my mom and I visited the chapel at Gloucester County Community Church following their Saturday evening sermon. During this time we prayed with a woman of the church and she said “It will work and there’s a reason God is giving you this gift now and now you have to find out what that is.”
She was right in every way possible. I believe that this is it. I’m supposed to use my new found hearing to help people. That’s why I want to write this blog and turn t his blog into a book — to help other hearing impaired individuals like myself and to encourage them and show them they can do anything they put their minds to.
My mom was very excited but also a nervous wreck during my surgery. I’m a light weight when it comes to any kind of medication, alcohol, or other substance. So the instance they gave me the anesthesia, I was knocked out. Unfortunately, they gave it to me before they had a chance to ask me how to turn my hearing aids off (I had to remove them both for the surgery). So they called my mom to ask her which caused her a bit of panic haha. But other than that she was fine.
She helped me out and showed me a lot of love and support like any great mother should do while I recovered from my surgery. Her and my dad made me special foods (I couldn’t chew for awhile because it put too much pressure on my ear). She helped me get dressed, she helped with my dizziness, and she even helped me manage my hair (for 10 days I wasn’t allowed to wash my hair after my surgery…my mom helped me clean it by getting me dry shampoo, combining around the incision for me, and even using a washcloth to try to clean it up for me). She did far more than what most parents would ever do, that’s for sure.
Activation day was one of the most exciting, yet anxiety-ridden days of the whole process. It wasn’t quite what we expected. I didn’t hear very well the first day. My brain was overwhelmed and had trouble catching up to what I was hearing and processing it correctly. Everything sounded like a baby crying for the most part. Talking with people was pretty challenging and disappointing. I couldn’t hear music or identify the Christmas songs on the radio (I was activated on December 17th). But she never let me know she was disappointed and she never yelled at me or lost her patience. Instead she remained calmed and understood that it was a process. She also celebrated the small victories with me — like my amusement by the sound of light switches and the pouring of liquids into cups.
I was able to hear my mom’s voice better on the 2nd and third day after my activation —- except it still didn’t sound natural. She sounded identical to Minnie Mouse. I couldn’t stop laughing at her. She thought it was kind of funny. She didn’t get mad at all, she continued to support me throughout it all.
Some people who get cochlear implants feel they do not benefit from them or they don’t work. I think that most of these people have gotten it all wrong. They do work — but you have to work with it, too. You can’t be lazy. You need to work with it, especially when you first get activated, on a constant basis. Sure, it might be hard. You might hate what you hear, but it’s never going to get better if you don’t work at it.
My mom worked with me on a constant basis. I really wanted to hear music, but during the first week or two music sounded terrible. My mom helped me by still playing it and buying me a bunch of new music that I was not already familiar with to listen to. She also fed me a lot of words. She had me repeat sentences and words back to her like I’d do for my word recognition tests. She’d even print hundreds of pages of words to go through and highlight the ones I didn’t get right so that she would know which ones to go back to and work with me more on.
When I started to get bored with the words, my mom looked for ways to make it more fun for me. She knew it was important for me to hear these sounds and work with my cochlear. She discovered the Angel Sound program for me which made listening more fun and it also allowed me to train my hear to hear different sounds that went beyond just the words. This has been extremely helpful and beneficial for me.
In all honesty though, the training me to hear and helping me process sounds happened well before my cochlear implant came into the picture. From an early age my mom worked with me excessively. If you’ve ever verbally talked with a deaf person chances are you noticed they have a speech impediment or don’t speak clearly. That’s not the case so much with me. My speech isn’t 100%, but it’s far better than most people who have the same degree of hearing lost as I do. This is because my mom had me placed in speech therapy from the time I was 2. She also always has (and still does) correct me every time I mispronounce a word (which is often…my boyfriend jokes that I can write very well, but still can’t pronounce half the words I write lol). My surgeon, audiologists, and even random strangers compliment me for my speech all the time and tell my mom she is a great mom for all she’s done to help me develop my speech. They couldn’t be more right with that.
I’ve been activated for almost 5 months now, and my mom still continues to work with me with my implant by giving me words, testing me with different sounds, and of course celebrity even the little victories with me. We recently went to a Sidewalk Prophets concert together. It was not my first concert since getting my implant (my first was the Danny Gokey concert I went to with my boyfriend), but it was the first one I went to with my mom. Prior to getting my implant, my mom and I would go to shows together all the time. Some of the bands we’ve seen together include:
- Britney Spears
- Michelle Branch
- Good Charlotte (x2)
- Simple Plan (x2)
- Forever the Sickest Kids (x3)
- No Doubt
- The Ataris
- Katy Perry
- Pat Benatar
- Rick Springfield
- Avril Lavigne
And the list just goes on and on and on. But over the last few years, it’s gotten much harder for me to really distinguish what songs are being played, hear the musicians talking, or understand much of anything at all. This time around I was able to hear EVERYTHING going on. I knew what the guys were saying to the audience. I knew which songs were which. I could hear all of the distinct instruments. My mom was so excited and happy for me that she cried.
None of this would have been possible without my mom. I am 100% certain I never would have gotten my cochlear without the help of my mom. I’m not even sure I would have my college degrees without her because I’m not sure I could’ve gotten into a Public University. Getting into a non-specialized kindergarten class was a challenge enough, but my mom fought tooth and nail to make it happen. My mom wanted nothing more in life than to see me gain the ability to hear, and thanks to her persistence, and the grace of God, it was made possible. Mom, I know you sat here and read every single word (all 3300+ of them…your post was longer than Larry’s by over 1,000 you should feel proud!) because you read all of my posts. I also know you’re more than likely crying (why do I always make everyone cry?) and laughing at the same time at the end of this, but I just need to take this time to say I love and I can never thank you enough for all that you’ve done for me.