I often times speak out against how frustrating it can be to have people see my cochlear implants and automatically assume that I sign. This is annoying but an easy mistake for people who are not familiar with the difference between lowercase d deaf and capital D Deaf to make. What is infuriating to me is when I tell people that I don’t sign and they don’t listen and insist on trying to sign to me anyway, such as what recently happened to me at Human Village.
I’m realizing more and more as I talk to different hearing adults that they just simply don’t understand why I don’t sign and how I can still communicate with others without sign language. People are especially confused by how I managed to get through school and to survive in a hearing world without sign language. I want to use this blog post to try to clear up some of the confusion.
Here are 5 reasons why I never learned sign language. As you read through my reasons I ask that you remember that I am and have always been mainstreamed. I am lowercase d deaf meaning that I have significant hearing loss but I live in a hearing world. I have never been a part of the capital D Deaf community. I support Deaf culture and sign language and the capital D Deaf community, but this is not my world. My experiences are unique to me just as someone else’s are unique to them. What worked for me isn’t right for everyone and vice versa.
1. It Wasn’t Practical.
I was first introduced to sign language when I was five and in the process of enrolling in kindergarten at Oakview Elementary School. My speech teacher, Mrs. Smeltz, offered to teach me sign language. My parents asked me if I wanted to learn it. They were very supportive of it but ultimately allowed me to make my own decision. I decided against it because it didn’t interest me, mainly because I didn’t know anyone that spoke sign language. It seemed to me at the time that learning it would be a waste of time and not worth the effort because I wouldn’t really have anyone to sign to. My parents would have had to learn sign language in order for me to sign with them and any friends or loved ones or honestly anyone I’d want to communicate with would need to learn how to sign in order to talk to me. It seemed much easier for me to learn how to communicate in spoken English and to learn strategies on how to exist in the hearing world than it was to have everyone I wanted to talk to learn sign language.
2. Nobody Cares About Sign Language (Except the Deaf Community).
If you are capital D Deaf, you care about sign language. It’s very, very, very important to you. Sign language is your world, and I get that and support it.
But I’m not capital D Deaf. I am lowercase d deaf living with hearing loss in a hearing world where most people don’t really care about sign language. Some people might choose to study it for fun or as a hobby, but a lot of people don’t really take it seriously.
Unfortunately, this can make learning it very difficult, especially if you try to learn it later in life like I did.
I tried to take ASL in college as an elective at Rowan University, but at the time I was enrolled in undergraduate studies (September 2010 – December 2012), it wasn’t an option. I remember asking about this before and they said they weren’t offering because they didn’t have the money/funding for it and there wasn’t an interest. This is no longer the case…ASL is seen as being almost trendy now and there are classes (which I’ll get into in a later point), but that was unfortunately not the case when I was an undergraduate student there. One of the biggest problems with how people view sign language is they see it as a hobby rather than as an actual language. This is a problem because people lose interest in hobbies and pass them off to the side to forget about when they get bored. Languages on the other hand are seen as essential communication skills needed to survive in the world. ASL sadly is not viewed in this light by people outside of the capital D Deaf community.
I to enroll in a non-credit course at Gloucester County Community College multiple times to learn ASL. It was always cancelled though due to low enrollment. They couldn’t get enough people to sign up for it as a non-credit class to make enough money to pay the instructor I guess. People will enroll in ASL if they can get college credit. It’s often seen as an “easy” and “fun” class to take for credit. But when people aren’t getting something out of it for themselves (they don’t see learning ASL as being important, especially since many of them don’t know anyone who is capital D Deaf…), they don’t see a point in learning it.
3. Learning Sign Language Was Too Expensive.
I know what you’re thinking.
“This isn’t true.”
“My best friend’s cousin’s dog sitter is fluent in sign language and could teach you for free…”
“Blah blah blah insert random noise/nonsense here.”
Okay, first of all when the concept of sign language was first introduced to me back in/around 1995, there was no YouTube.
As stated in my previous point, I didn’t want to learn sign language as a kid and could you blame me? A five year old usually has better things to do or other interests…
As mentioned in my last point, the non-credit courses were constantly cancelled due to low enrollment. These did cost money and at one point my family and I shelled out a few hundred dollars so the whole family could learn it together, but it ended up being refunded to us all after the course was cancelled.
The non-credit courses were about all that I could afford. With Rowan not offering ASL courses for credit my other option would be to take the classes at a local community college for credit but it wouldn’t be covered by my financial aid/loan and I couldn’t afford to spend that kind of money on a class that wouldn’t even count towards my degree.
Another issue with learning sign language for free – while people definitely mean well, the people offering to teach it often are not fluent or experienced in sign language. They may know the basics and a few sentences here and there but not enough to really hold full conversations in sign language, which makes it not entirely practical. Those who are really fluent and certified to teach sign language typically want to be paid for their services so they teach the college classes which I already stated I couldn’t afford to take. This isn’t true for everyone of course, but it is true in a majority of cases.
4. Learning Sign Language Wasn’t Worth the Trouble.
For some unknown reason, learning sign language was designed to be the toughest subject I could ever study or learn. I have been working to teach myself German recently and it has been a much, much, much easier experience than learning sign language which is just ironic.
Here’s a list of some things I think are easier to learn for me than sign language:
- Mandarin Chinese
- Amish quilt-making
- Homemade cheese
- Quantum Physics
- Flying an airplane
I’m serious. This has been made to be impossible for me to learn.
Backing up a bit, remember how I said that Rowan University *did* in fact get an ASL course after I finished my undergraduate studies?
Well, I tried to enroll in it as an elective as a graduate student. I tried to make my case that this course would be perfect for my graduate research since my Master’s thesis was a memoir on my cochlear implant/deaf experiences. The writing department and professors such as Dr. Drew Kopp were so supportive of this and really tried to advocate on my behalf to make this happen.
But it always comes down to one person who has a little bit too much power and is the final decision maker…
I don’t know who that one person is, but if you’re that person and you’re reading this now – just know I’m glaring at you from my computer screen. Yep. Glaring. Mad hard glare.
So here’s the shortened version of what actually happened:
Since I was a graduate student, under Rowan University’s policies I was not permitted to receive graduate level credit for what was an undergraduate class. I would need to do something more to have the work qualify as graduate-level work.
Okay, that makes sense, right? No problem. I was planning to use this course for my research for my MA thesis anyway. I would take the course as a form of an independent study and keep a research journal and check in with Dr. Kopp who would be my adviser of the project. I just finished taking his Core II course where I had to keep a research journal as I conducted research for my MA thesis anyway. This would be essentially a continuation of the work we’ve already started together.
But that one person who I am glaring at through my computer right now said that wasn’t enough.
Instead I needed a detailed description of what exactly I’d be studying and using for my research. I needed to create a very, very, very detailed research proposal about how I’d be studying students. I needed to explain what I’d ask students, who would participate, how their data would be used, and so forth. It was so much more than what I had intended to do. I wanted to learn the language, not how students used their experiences or what they thought of the course or whatever, but if it got me into the classes, I was willing to comply.
But of course it wasn’t that easy. Nothing in life is ever that easy – I had to submit a research proposal to the IRB and have it approved.
It took me several weeks that summer to put together my application for the research proposal. There were so many parts and it needed to be as detailed and specific as possible. I also realized I would need to hire an intern to help me with my research along with a videographer to film students. I would also need permission from the students. There were so many different loopholes and approvals I would need. Dr. Kopp worked with me every step of the way to help me in writing down the steps and just what I would need. We didn’t submit the application until the last minute when we were confident we had covered all of our bases.
I think I worked harder and longer on that application that I did in most of my graduate level courses combined.
And yet, the application was STILL denied for many, many, many different reasons. The overall theme was that they needed more specific information and more approvals from people involved.
I was tired and getting burned out and the class wasn’t even approved yet, let alone started.
After having my application rejected I decided not to move forward and just accept that I wasn’t going to learn ASL that semester (or even study people who would learn it). I accepted my next point…
5. I Wasn’t Meant to Learn Sign Language.
God’s ways are better than mine. Every time I tried to learn sign language he put roadblocks in my path that prevented me from learning it. Sometimes this seemed extreme, as was the case with the hardships I faced trying to take the ASL course in grad school. He simply did not want me to learn it. I will never know exactly why he didn’t want me to learn it until I am face to face with him in heaven and have a chance to actually ask him, but I do have a few theories.
Have I had learned sign language, my life would be very different. I may not have been mainstreamed like I am today and I may not have accomplished all that I have. I know that these is controversial and this statement may infuriate anyone from the capital D Deaf community who may be reading this, but you can’t deny the fact that it’s true:
Not being able to interact in the hearing world will hold you back in society. Is it right? No, it’s not. But it is the truth.
If I learned sign language from an early age and made it my dominate language and chose to become a part of capital D Deaf culture, I may not have been as prepared for the “real” world because my communication skills may not have been as good. I wouldn’t have had to rely on lipreading as much and I wouldn’t have learned ways to navigate the hearing world because I wouldn’t have had to. I probably wouldn’t have went to mainstream school, let alone college, and wouldn’t have had the same experiences and may not have had as many job opportunities.
I know it’s not right, but the world is designed to operate for people who can hear and while it’s discrimination, employers get away with it. Most employers don’t want to hire someone who can’t hear, especially if they need a lot of accommodations such as sign language interpreters. These things cost money and people don’t want to have to pay for it and if employers aren’t the ones responsible for paying for it (ex – if health insurance or disability services cover it…I admit I’m not entirely sure how this works) it still won’t change the fact that employers will view it as a hassle that they may not want to deal with. Meetings will take longer, phone calls may go on unanswered, and work days may be less productive. Again, I’m not at all saying I agree with this. It’s horrible and it should not be this way, but you can’t deny the fact that this is how the world operates and even anti-discrimination laws can’t change the way people think and feel – that’s something only God can change.
If you want to get ahead in life, you need to be able to sell yourself and adapt to the outside world, knowing that a majority of people exist in a hearing world. This is similar to how a majority of the world speaks English (and most of the US). If immigrants want to get ahead and make a future for themselves in America, it is very wise for them to learn the language. We can and should support them by trying to speak their native language or becoming familiar with it and offer translators, but at the same time it is easy for them (and perhaps more practical) to learn our language then having all of our people try to learn theirs.
Have I had learned sign language, I may not have ever gotten cochlear implants. I know that this isn’t the right path for everyone to take, but it was the right path for me. My cochlear implants have opened a whole new world of opportunity for me and greatly improved my quality of life. If I had sign language then getting cochlear implants wouldn’t have mattered or been a priority for me and I would’ve missed out on so many amazing experiences (not to mention sounds!)
And yes, I did try to learn sign language post-cochlear implants. I am not sure why God still doesn’t want me to learn it, but I even have my theories about that, too. I am still training my brain to hear sounds and I imagine I will for the rest of my life since there’s always something new to hear. My hearing is fantastic now and “almost” perfect, but it will never be natural. I will always need a minute to think about and process what I am hearing. I’m never going to “just hear” – my body is not capable of that. If I would’ve learned and became fluent in sign language I may not have had the need to work so hard at hearing the sounds and training my ears post-cochlear implants. Simply put, I may have gotten lazy with my training and rehab.
Sign language is important and should never go away. I understand the point oralists were trying to make way back when and I agree that being able to communicate in a hearing world without sign language will help the deaf to advance in society. However, sign language is a tool or a strategy that works better for some than for others. For some people they may be the son or daughter of Deaf parents born into the capital D Deaf culture where sign language makes the most sense for them to use. For others like myself, lipreading and cochlear implants are better tools to help prepare us for the hearing world we choose to live in.
There are some people who absolutely need sign language, but I am not one of those people and I shouldn’t be made to feel bad or wrong about my decisions. As a child I was able to get by in school and society through lipreading, sitting in the front of class, reading a lot of books and text to gather messages, and relying on others to lend me their ears when in need. As I got older, cochlear implants gave me nearly perfect hearing. In either case, I managed without sign language and I regret nothing. I was still able to live a happy and fulfilling life and never felt cut off from communication.
Everyone has their own communication preferences, especially those who are living with hearing loss. It is important to remember that no two people are exactly the same and just because some individuals with hearing loss sign, doesn’t mean that they all do and it’s perfectly fine if you choose to sign or not to sign. It’s a personal decision and you should never feel the need to apologize for the way you wish to be spoken to. People should respect your decision and if they don’t understand it, they should take the time to ask questions and educate themselves so that they can learn rather than judging, speaking for or on behalf of someone else, or flat out ignoring someone’s requests or communication preferences.
The purpose for today’s blog is to answer some of the most commonly asked questions about deaf people. These five questions came from the most searched terms related to the keyword “deaf” according to SEMrush. Please note that I am answering based on my own personal experience as a lowercase deaf individual who has profound hearing loss but has never been a part of the Deaf community.
1. Can Deaf People Drive?
Yes, and I just ran over the last person that asked me that question.
But seriously, why wouldn’t a deaf person be able to drive? If you’re deaf-blind then okay I can definitely see why you wouldn’t be able to drive (no pun intended), but this question specifically calls out deaf people, not deaf-blind people. While being able to hear things like sirens would certainly be beneficial for driving, it’s not actually a requirement so long as you can see.
Did you know most deaf people actually have really strong perceptive vision? My boyfriend is always amazed by my ability to spot a car coming from miles away because I can always see the lights out of the corner of my eye. Since deaf people can’t hear, they rely on the eye sight to make up for it. What this means in terms of driving is that deaf people will always be alert and aware of their surroundings and they will be able to see the flashing sirens, even if they can’t hear them. Some may even argue that BECAUSE deaf people can’t hear they will actually be more careful and cautious drivers. That of course is up for debate. I’ll let you know the verdict on that one once I receive my license. 😉
2. What language do deaf people think in?
Seriously? This question is so dumb it makes my brain hurt.
Deaf people think in the same language(s) they speak in. This goes for all deaf people including those who are deaf with a lowercase d, those who are culturally Deaf and use sign language, and those who are non-verbal. Just because you’re deaf does not mean you lose your ability to think or that the way in which you think is any different from that of a hearing person.
Also, those who are non-verbal may still be able to understand spoken and written language and will still very much have a native language (or maybe even more than one). I think that one thing that most people get wrong about deaf people that are non-verbal is that they assume that because they are non-verbal they must be dumb. In actuality, most deaf people that are non-verbal choose not to speak with their voice because they can’t hear themselves speak and it’s a self-conscious thing or not something they feel comfortable with. Some of them may not have had speech therapy, so they may be aware of the fact that their pronunciations may seem strange to someone who is hearing which may make them feel uncomfortable. Others may have limited hearing and not like the sounds of their own voice. Whatever the case may be the important takeaway here is that even non-verbal deaf individuals can be highly intelligent and most often are.
Similarly, some people may be under the wrong impression that culturally Deaf individuals that are fluent in sign language must not be able to think in that language since sign language is a non-verbal language. This assumption is also false. I could be wrong, but I have a hard time imagining deaf people thinking in terms of signs. Rather, I think they think like you and me do in their own native languages.
It’s important to note here that sign language is not a universal language; there’s actually many variations of it. American Sign Language most closely resembles the French written language, but there’s also British Sign Language, South African Sign Language, Afghan Sign Language, and hundreds others even including Jamaican Sign Language! While not a verbal language, they still hold many of the same structures as verbal and written languages do including having verb tenses, parts of speech, subject-verb agreements, etc. When deaf people think I believe that they are thinking in terms of these sentence structures even if they aren’t actually hearing spoken language.
3. Can deaf people talk?
This kind of goes back to what I was saying in my last answer. Generally speaking, the answer is yes nearly all deaf people are CAPABLE of talking. However, some Deaf people may choose not to talk with their voices.
It’s important to note that many Deaf people, and even myself as a lowercase/non-culturally deaf individual hold the belief that you don’t need to use your voice or to speak to communicate. “Talk” means to say something verbally, but “communicate” means to simply share or exchange information, news or, ideas. There are many ways in which a person can communicate. Many Deaf people prefer to use sign language to communicate, but even that isn’t their only option. For me personally I prefer to communicate via social media, E-mail, text messages, and hand-written notes.
4. How do deaf people think?
With our brains, duh.
This bothers me though since so many people think that deaf is synonymous for dumb or learning disabled. Yes, some deaf people have other disabilities including learning disabilities or lower IQs, but as with all things in life, this doesn’t mean ALL deaf people have learning disabilities or low IQs.
In fact, there are many deaf people who are highly intelligent. Some of the smartest deaf people include:
- Laurent Clerc – The first deaf teacher in America who founded the very first school for the deaf in North America. He was extremely influential in showing that not all deaf people are “deaf and dumb”
- Thomas Gallaudet – a teacher whom Gallaudet University is named after; he co-founded it with Laurent Clerc
- Heather Whitestone McCallum – The first, and quite possibly to this day only, deaf Miss America. She is an influential advocate for deaf rights and she also served on the United States’ National Council on Disability in the past.
- Juliette Low – The founder of Girl Scouts in America
- Rush Limbaugh – An American talk show host and Republican political commentator
- Alexander Graham Bell – Inventor of the telephone
- Vinton Cerf – the “Father of the Internet”
- Thomas Edison – A famous inventor
- Helen Keller – The first deaf-blind woman to earn a bachelor’s degree. One of the most famous women in US history.
Deaf people think in the same way that non-deaf people do. I know it may sound strange, but like I said earlier, you use your brain to think…not your ears.
5. How do deaf people date?
Girl meets boy.
Boy meets girl.
Girl likes boy.
Boy likes girl.
Girl asks boy out.
Boy asks girl out.
Girl and boy live happily ever after.
Boy and girl live happily ever after.
But no, seriously. Dating is dating is dating is dating. It really doesn’t matter if you’re deaf or hearing, it’s all the same.
With that being said, some deaf people only date other deaf people. This may be due to them having a lot in common with their hearing loss and being able to relate well to one another. Those who are capital D Deaf may choose to only date others who are either capital d Deaf or even lowercase d deaf because it fits in with their culture. These individuals use sign language as a primary language and likely attend a Deaf school and exist in Deaf world. They may have limited access to mainstream society, so this is probably what they are most comfortable with.
In my own personal experience I’ve only ever dated people who are hearing. It’s not that I am against dating another deaf or even Deaf person, it’s just that I never really met one that I was romantically interested in and now I have found my forever person who happens to be hearing. This is likely because I’ve always been mainstreamed and lived in the hearing world. I do not know any sign language and I am not a part of the Deaf with a capital D culture. Dating a hearing person comes naturally to me and is what I am comfortable with.
Just as non-hearing people have their preferences and likes and dislikes and turn ons/turn offs and deal breakers and makers, so do deaf people.
But when it comes down to actual dating, it’s pretty much the same. Deaf people still like to go out to eat, watch movies, go bowling, go golfing, go shopping, etc.
Some deaf people may prefer to go to places that are quieter so it’s easier for them to hear. Well-lite places may also be helpful so that they can see and read lips or see signs more clearly if they use sign language as a primary means of communication. But for the most part, deaf people are just looking to have a good time the same way hearing people are.
I hope my answers to the five most commonly asked questions on being deaf helped to shed light on what it’s really like to live without hearing. The most important thing I hope you take from today’s blog post is that the deaf can do anything the hearing can do except hear. We all want to be treated the same as a hearing person would be treated because we *are* the same. Our ears don’t work but we still have the same needs, desires, passions, interests, and lifestyles for the most part.
Hey guys! I’m sorry it took me so long to update this blog. I’ve had a few ideas and have been meaning to post for awhile, but what can I say…life happens.
I spent most of my summer working only one job and not focusing on writing (I probably should’ve focused on it at least a little bit, but I really needed that break!). I wanted to spend as much time with Evan as possible before I had to go back to school. As a result, we grew closer and our love for each other is stronger than ever. He’s such a gem. There’s definitely a few stories about our adventures together in the works – so stay tuned!
What I want to talk about today though is my current cochlear implant book project and the genre I am writing in. As you guys all know I have been working on a memoir about my cochlear implant experience. Writing a memoir has been a no-brainer for me and strongly encouraged by my professors, mentors, and peers. Memoirs are reflective pieces of non-fiction that draw largely on a person’s memories which is exactly what I have been doing with this project – discussing my life before cochlear implants and the memories I have with hearing loss, talking about how my life has and is still changing since being implanted, and reflecting on what it all means.
But am I limited to writing just a memoir, or do I still have other options? That is the question I find myself asking now and I believe the answer may be “No.”
This semester as I finish up the last two classes I need to earn my MA in Writing, I will be working on a special project in my Creative Non-fiction class. I had my first class on Tuesday night where I met with my Professor Joe “Sam” Starkins. I was honest with him and talked to him after class explaining how I already finished my Master’s project (which confused the heck out of him and well honestly it confuses the heck out of the entire department, from what I’ve been hearing) but still want to work on my project since it remains largely unfinished. I explained how it was a memoir about my cochlear implant experience and asked if it would be okay if I continued to work on it and to revise it.
To my surprise, while Professor Starkins did not necessarily say no, he also didn’t exactly say yes. He explained how the class was a workshop and as a workshop would work better if I presented an entirely new project.
“Can I write a book of devotions? I do have an idea for that. I know it’s a kind of weird idea but it’s something I’d really like to explore,” I said.
Surprisingly, he said yes and actually seemed kind of excited about the project.
So, here I am. Initially my idea for the book of devotions was to write using all bible verses that focus on hearing the word of God and listening to what God has to say. Verses like Isaiah 35:5 and Romans 10:17 came to mind.
I took my first stab at the idea of writing a book of devotions when I revised my in-class exercise. The exercise was simply to write a scene in class for 15 minutes without stopping. My memoir came to mind first (I didn’t know at this point in class that I would be discouraged from working on that project) so I had to think back to what parts of my memoir I didn’t already have written and/or what needed the most work. The scene where I met Sherry in Miracle Ear came to mind first, probably because I have been thinking about it a lot lately as it happened almost exactly four years ago to date.
To revise, I had to condense a lot of the scene and focus on only the most important parts and then expand it to at least 500 words. This scene in particular I don’t think quite fit in to the idea I had of focusing the book on verses that relate to hearing God’s word and listening to what he has to say, but it did fit in nicely with trusting the Lord, so I pulled from Proverbs 3:5-6 (my life verse) as the main verse and also referred to Psalm 27:14 and Jeremiah 29:11 for reference.
Whether or not I stick with my initial plan of writing a book of devotions about hearing the word of God and listening to what he says or if this becomes an entirely different book of devotions focused more on hearing loss and my cochlear implant process is to be determined, but I’m super excited about this project and proud of what I’ve done so far. I’d like to share it with all of you, so please see the very first devotion posted below.
I welcome your feedback and critique, but at the same time please keep in mind this is my first time dabbling with this genre. I have read many books of devotions but am still learning what the form/style is (side note – if anyone can recommend a craft book on writing devotions I’m definitely in need of suggestions!) So please read, enjoy, and leave a comment letting me know what you think!
Proverbs 3:5-6: “Trust in the Lord with all thy heart and lean not onto thy own understanding. In all of your ways acknowledge him and he will make straight thy paths.”
“Is there anything else I can help you with today?” Sherry asked as she handed me back my left hearing aid. She had finished cleaning both of my hearing aids and changing the plastic tubing on them. I placed the old, yellowed ear mold inside of my ear and swung the processor around my ear. I smiled, happy to finally be able to hear some sounds, even if it was limited and even if I didn’t always know exactly what those sounds were.
I looked up at Sherry who was sitting on the other side of the table in her office chair so that I could read her lips and make out what she was asking me. “No. I’m good,” I said.
“Actually, if you don’t mind there’s something I’d like to ask your opinion on,” Mom said. I looked at her, puzzled. Every month or so I visited Miracle Ear to have the plastic tubes changed on my hearing aid since they would get moisture in them and harden and shrink, making it difficult to hear. While this was my first time meeting Sherry and attending the Turnersville Miracle Ear location, the appointment itself was nothing out of the ordinary, just the same tried and true routine.
“Sure,” Sherry said.
“We’ve been saving up for these new super powered hearing aids. Kim has been seeing Mindy at the Cherry Hill location and she says they’re supposed to be great. But back when she was seeing Greg at Deptford he said the same thing about the ones she has now and to be honest I never thought they were that great. What’s your opinion on them? They’re very expensive and I guess I’m just wondering, are they worth the money? Will they really help her?”
I let out a sigh and rolled my eyes, hoping my mom didn’t notice my natural reaction. Dad asked Mindy all about the hearing aids at my last appointment and Mindy told us about them and even let me try on the model they had on hand. I felt like I already knew everything there was to know about these hearing aids. They were not only the best option for me at the time, but my only option. Or so, I thought.
I looked back at Sherry as she inhaled deeply and held her breath for awhile before slowly exhaling.
“You don’t have to say a word, your expression says it all,” Mom said.
“I don’t mean to say the hearing aids aren’t good.” Sherry explained, “But what Kim really needs is clarity which no hearing aid, no matter how good, will ever be able to give her.”
“Okay, so then what do we do?” Mom asked as I listened, unsure of what to expect.
“Have you ever considered getting a cochlear implant?” Sherry asked.
Mom and I both looked at each other before saying no and explaining how we were previously led to believe that cochlear implants were a dangerous form of brain surgery that would likely not work anyway.
“Oh no, not at all. You guys need to go home and do your homework then let me know what you think,” Sherry said.
That night Mom and I began our cochlear implant research process. I turned to social media to look for real cochlear implant recipients and what their experiences were while Mom looked for more academic sources and articles. Together we shared notes and our thoughts. We didn’t know what would happen, but we knew that if we put our faith and trust in the Lord he would walk with us and show us the right path to take.
Psalm 27:14; Jeremiah 29:11
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.
On May 29th I participated in my first cochlear implant research study. It was held at Jefferson University by my audiologist, Dr. Louisa Ha. The research study was to examine the different kinds of experiences cochlear implant users have with music. Most cochlear implants are made to amplify sound and give more word clarity, but not really to enhance music. Many cochlear implant users report that they have negative experiences with music. They say that music does not sound natural or pleasant to them. I, however listen to music all the time and find that it sounds much clearer, more natural, and better than ever before since getting my implant. For all of these reasons Louisa really wanted to bring me in for the study.
When I first arrived I had to fill out a bit of paperwork. This set of paperwork was basically just giving my consent to be used in study. Shortly after filling out the paperwork Louisa explained the tests to me and what I would have to do and she made sure the volume on her computer was at a comfortable level for me. Then she left the room while I took the tests.
The first test was different pitches of sound. They gave me two pitches and I had to choose which one was the higher pitch. This wasn’t too difficult. There were a few that sounded identical so I just had to guess on those. I think I did okay on this. There were probably about 30 pitches to go through and I wasn’t able to replay anything.
After I did the pitches my next test was on music melodies. This was the hardest part of the test. It played the following songs:
- Twinkle Twinkle Little Star
- Frere Jacques
- Old Macdonald
- Here Comes the Bride
- Mary Had a Little Lamb
- Jingle Bells
- London Bridge
Except you didn’t get to hear the songs with the words and the melodies were removed. It was like hearing the song with the tones played on a keyboard or something. It made the songs sound very weird and unrecognizable. I pretty much had to just guess on all of these as I couldn’t tell what hardly any of them were. When the test was over Louisa said this was something she struggles with too even though she doesn’t have a hearing loss.
The final test played some instruments and I had to try to identify which one was which. It used the following instruments:
I got to play each sound before the test started to familiarize myself with them. When I did that it didn’t seem too bad but when the actual test started it was a lot harder especially since I couldn’t replay them. All of the instruments sounded very similar,and at times, identical to me. I had to really think and ask myself “does it sound like they are blowing into an instrument here, or strumming along?” which helped sometimes. Other times I had to just guess.
I didn’t get to see my test results yet. I may get them after the study is complete, but there is no guarantee. So I don’t know how well I did yet. I was very surprised by how challenging the test was. I have been practicing a lot of sounds especially music with a program I have on my computer called Angel Sound. It has been very helpful for me with learning different sounds I never heard before or never heard properly. However, the tests used as part of the research study I found were much harder than the ones I did on Angel Sound.
Louisa re-programed the music setting I have on my cochlear implant after I finished the study. She did this so that I can get used to it during the next couple of weeks. On June 19th I am coming back to Jefferson for the second half of the study. Basically the first half sees how you do when your cochlear isn’t programmed to the settings and the second half sees how you do once exposed to the settings and prepared/used to it. So the two tests will be compared/contrasted for the overall study I’m guessing. I’d assume that the second test will be much easier than the first, but only time will tell. I’ll be sure to post an update after June 19th when I complete the second half of the study!