Tag Archives: hearing impairment

no_asl

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…”

“There’s YouTube!”

“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
  • Calculus
  • 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.

 

Advertisements

Writing Article LinkedIn Poster Header (1)

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


maxresdefault

Image Credits: Vox on YouTube

Hey guys! Hope all of my East-coast friends are staying warm and dry in this crazy snow storm!

I don’t know if it’s the snow or what, but I received an incredible surge of inspiration and had a major Eureka moment in regards to the opening chapter of my memoir. I thought a better opening would be something more reflective in which I show what is going through my mind moments before I received my first cochlear implant tied in with flashbacks on my life before I was implanted and the time when I was first diagnosed with profound hearing loss (the yellow brick road chapter).

This needs A LOT of work still, obviously, but I’m pretty happy with the first 1,000 which are the new words that I added today. I am also in the process of interviewing my mom for more details with the original yellow brick road chapter. She said she’d need some time to think about many of the questions I had as she tries to remember, but I’m hoping to get some answers from her soon to better flesh out that chapter/add more details.

Regardless, I hope you enjoy the revised opening chapter. Feel free to leave a comment on this post letting me know what you think!

Entering Into a Technicolor World of Hearing

I’m lying in a hospital bed at Jefferson University hospital in Philadelphia. There is an IV inserted in my right arm and Mom is standing to my left. Dad, who has never been a fan of hospitals, is outside in the waiting room. Everything looks like your typical hospital setting except for two things:

  1. I am not sick or injured.
  2. I cannot stop smiling.

My journey begins now. Today I will receive my first cochlear implant, and if all goes well with the surgery and recovery, next month I will be activated and Lord-willing, hear, like a normal hearing person, for the first time in my life.

If this works, my black and white and sometimes sepia world will become technicolor and I will not just hear the sounds I’ve always heard, but I will be able to understand what those sounds are and hear them the way they are supposed to sound. Conversations will sound like actual conversations (without me needing to exhaust myself by practicing heavy lipreading). I’ll know when music is playing, and it will sound like actual music. I may even be able to hear what a flute sounds like. I’ll be able to go to the movies without having to awkwardly ask for a pair of caption glasses which A. The ticket salesman won’t understand, or B. won’t work anyway. After the movies, I may be able to go out to dinner with my friends or a date and order my own food without awkwardly staring at another person as if to say, “Please lend me your ears, I can’t hear a thing the waiter is saying.”

If this works, my world will forever change, hopefully for the better.

If this doesn’t work, I risk losing the approximately 7% total residual or natural hearing I have left in my left ear. This residual hearing is currently being amplified by hearing aids.

Amplify [am-pluh-fahy]. Verb. – Increase the volume of (sound).

Notice how it doesn’t say anything about clarity or being able to understand or comprehend what those sounds are. That’s what’s missing. Hearing aids amplify sound, but they don’t give me any clarity. My cochlear implant is supposed to fix that. But if it doesn’t work, I’ll lose my ability to even amplify sounds. I’ll be left with absolutely nothing in my left ear — silence.

I made a list of the things I want to do post-cochlear implant activation, should this work. It looks like this:

THINGS TO DO POST-COCHLEAR IMPLANT ACTIVATION

  1. Get caught in the rain.
  2. Experience church in a whole new way.
  3. Watch movies without captions.
  4. See a movie at the drive-in.
  5. Hear a flute, bell, violin, and any other instrument I couldn’t hear before.
  6. See an orchestra.
  7. See a play.
  8. See a ballet.
  9. Listen to Pink Floyd’s “Dark Side of the Moon” in its entirety.
  10. Talk on the phone.
  11. Order food out on my own (restaurant and takeout/Dunkin).
  12. See a concert (preferably Good Charlotte).
  13. Hear my cat meow.
  14. Listen to the radio.
  15. Hear a cricket chirp.

I didn’t even want to think about what my life would look like if the cochlear implant didn’t work. Would I be forced to learn ASL? Would I join the Deaf community? Could I manage to get by with the remaining, un-implanted ear? Thinking about what would happen if the cochlear implant worked was fun but thinking about the alternatives was terrifying.

I had faith and trust in God that the cochlear implant would work. I prayed constantly and attended church as much as three times in a single day. For the weeks leading up to this day I had both Gloucester County Community Church and Washington Baptist Church praying for and with me and even met with the deacons and deaconesses at both churches.

“God is going to give you an incredible gift. Now it’s your job to figure out how you can use it to serve the Lord,” the deaconess at whose name I cannot recall told me as I met with her in the chapel at GCCC.

I was so excited to begin my new life as a hearing person that as the date of my surgery came closer, sleep became more and more difficult. I’d stay up for 20 or more hours at a time, keeping myself busy by binge watching all 9 seasons of How I Met Your Mother and when I got bored of that, I’d clean everything in sight. I no longer had any concept of time.

“Do you really have to clean your toilet at 3 in the morning? I’m trying to sleep and all I can hear is your toilet flushing,” Mom complained.

“No more cleaning. I don’t wish to smell all of your chemicals first thing in the morning,” Dad pleaded.

Last night, I could hardly sleep at all. The Patriots played the late night 8:15pm game against the Colts.

“Don’t stay up too late, you have a big day tomorrow. You know the Patriots are going to win anyway,” Mom warned.

“Oh, let her stay up. She’s just going to sleep through the surgery anyway. Does it matter if she’s tired?” Dad said.

I stayed up for the whole game and then spent most of the rest of the night in bed, browsing Facebook, Twitter, and Instagram on my phone. By 5:30 AM, I was wide awake, dressed in my brand-new button down fleece pajamas (mom said there was no sense in wearing real clothes, I’d be better off being comfortable and I’d need to wear button downs to avoid pulling shirts over my head post-surgery anyway), and ready, a full two and a half hours before I was scheduled for surgery.

Now the day is finally here. Dr. Wilcox just came in to tell me everything would be okay and to instruct the anesthesia team to begin. I have a plastic mask on my face, covering my mouth and nose. I can hardly keep my eyes open anymore as I feel my body surrender itself to the anesthesia.

When I wake up, I’ll be a cyborg.

In another month, I’ll be activated, and I’ll finally be able to hear, Lord-willing.

If this works, I’ll be able to hear for the first time in my life, or at least, the first time since my mother discovered I was deaf at the mere age of two.

When I was two, Mom would call out my name, but I never responded. When she mentioned it to my pediatrician  during my next checkup, the pediatrician thought it was just a phase or a case of the “terrible twos”.

“No, I know my daughter. She can’t hear me,” Mom would argue.

When my mom clapped behind my back and I didn’t flinch, she knew something was wrong. Against my pediatrician’s advice, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.

After performing a series of hearing test,  Miss Terri confirmed what we already knew: I had hearing loss. What we didn’t realize was how severe my hearing loss was. Miss Terri explained that my hearing loss was profound, meaning the only sounds I could hear were those that were at a volume of 90db or higher such as airplanes, helicopters, firetrucks, and possibly a lawn mower. Hearing aids were recommended to amplify these sounds, but my ability to hear and comprehend sounds, even when amplified, would always be a challenge.

***

 After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. Mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.

“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.

“That’s because you don’t understand what this city is really like. It’s not safe,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.

Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”

Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.

Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.

“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.

I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.

Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.

“Say the word hot dog,” Miss Terri said.

“Hot dog,” I answered.

“Say the word baseball.”

“Baseball.”

“Say the word airplane.”

“Airplane.”

“Say the word ice cream.”

“Ice cream.”

“Terri, I’m sorry but I have to stop you,” mom interrupted.

Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?

“She’s not actually hearing you – she’s reading your lips,” said mom.

“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.

“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.

“Say the word kite.’

“Height.”

“Say the word chair.”

“Stare.”

“Say the word sub.”

“The.”

“Say the word third.”

“The.”

“Say the word ran.”

“Than.”

I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong.

When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels. There was nothing actually magical about it; it was just a regular mirror that I was allowed to draw on with magic markers, but I always loved this activity. I was never allowed to draw on the mirrors at home. I thought that this mirror was special since I could draw on it and the markers would wipe right off when I was done. As a two-year-old, the only logical explanation for how this could work was that it must have been magic.

Before I could draw on the mirror, Miss Vicki put me to work by having me practice my speech.

“Okay. Let’s practice our “Sh” and “Ch” sounds,” she’d say. “We’ll start wi“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.

“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?

“Shoes!” I said.

“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.

“Shoes!” I said.

“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.

“Tooze,” I said.

“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”

“Choose?” I said.

“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.

I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.

When I finished my masterpiece, Miss Vicki would continue with our lesson.

“Okay, Kimmy. We’re going to play a game now,” Vicki said.

“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.

I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.

“Okay. Your first word is suitcase,” she said.

“Suitcase,” I whispered as I threw the ball.

Vicki threw the ball back to me. “Try again,” She said. “Remember, Mr. Loud Mouth. Your voice travels with the ball.”

I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.

“Very nice! You got it!” she said.

Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. I was able to live my life in black and white or sometimes sepia. My world was full, but not always beautiful or complete. The older I got the more I realized that living as a deaf girl in a hearing world was a lot like living in a world without color.

 


0f53b0e5a3ae5aef07f7595ba6e846c1--road-quotes-wonderful-wizard-of-oz

Image Credits: Pinterest 

SPOILER ALERT:

This post has nothing to do with drugs or anything you’d expect from Camden, so sorry to burst your bubble if that’s what you were looking for.

This post does still have a very special story about Camden though. I present to you, the newly revised (and most difficult chapter to write) of my novel, “Follow the Yellow Brick Road”.

Chapter 1: Follow the Yellow Brick Road

            Loss. It’s one word with a multitude of feelings attached to it including despair, emptiness, and hopelessness. For some people, loss means nothing. You can’t lose something if you’ve never had it to begin with, right?

That’s how hearing loss worked for me. My mother, on the other hand, can remember the exact moment when she discovered my hearing loss.

I was two years old and my mother would call out my name, but I never responded. The doctors thought it was just a phase or a case of the “terrible twos”.

“No, I know my daughter. She can’t hear me,” Mom would argue.

When my mom banged a handful of pots and pans together behind my back and I didn’t flinch, she knew something was wrong. Defying the doctors, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.

After performing a series of hearing test, Miss Terri confirmed what we already knew: I had profound hearing loss.

The best way to treat it — or at the time, the only way to treat it — was with hearing aids. I needed them in both ears.

***

 After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. My mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.

“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.

“That’s because you don’t understand what this city is really like. It’s not safe.,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.

Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”

Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.

Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.

“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.

I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.

Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.

“Say the word hot dog,” Miss Terri said.

“Hot dog,” I answered.

“Say the word baseball.”

“Baseball.”

“Say the word airplane.”

“Airplane.”

“Say the word ice cream.”

“Ice cream.”

“Terri, I’m sorry but I have to stop you,” my mom interrupted.

Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?

“She’s not actually hearing you – she’s reading your lips,” my mom said.

“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.

“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.

“Say the word kite.’

“Height.”

“Say the word chair.”

“Stare.”

“Say the word sub.”

“The.”

“Say the word third.”

“The.”

“Say the word ran.”

“Than.”

I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong. Thanks a lot, Mom. I thought.

When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels.

“Ready to use the magic mirror?” Miss Vicki asked.

“Yes!” I would exclaim.

“Okay. Let’s practice our “Sh” and “Ch” sounds,” they’d say. “We’ll start with ‘sh’ first.”

“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.

“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?

“Shoes!” I said.

“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.

“Shoes!” I said.

“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.

“Tooze,” I said.

“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”

“Choose?” I said.

“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.

I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.

When I finished my masterpiece, Miss Vicki would continue with our lesson.

“Okay, Kimmy. We’re going to play a game now,” Vicki said. I didn’t have the heart to tell her I hated being called “Kimmy”.

“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.

I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.

“Okay. Your first word is suitcase,” she said.

“suit case,” I whispered as I threw the ball.

Vicki threw the ball back to me. “Try again,” She said.“Remember, Mr. Loud Mouth. Your voice travels with the ball.”

I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.

“Very nice! You got it!” she said.

Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. As far as I could see, I was one in the same with the rest of the hearing world. Unfortunately, as I’d learn in my grade school years, not everyone saw things that way.

 

 

 

 


635854630036909401-459272211_depression

Image Credits: The Odyssey Online

Before I get started on this blog post I just want to acknowledge that this is not going to be a popular post or a topic many people want to hear about. Most people, especially those who do not have cochlear implants, only want to hear about how amazing and life-changing they are. Make no mistakes, getting both of my cochlear implants was the best decision I ever made. I have absolutely no regrets. But at the same time that doesn’t mean this has been a fun and easy process where every single day is all peachy. Sometimes it is really really really hard, frustrating, scary, and overwhelming. Sometimes your cochlear implants can even make you feel quite depressed. That’s exactly what happened to me after my hearing appointment at Jefferson on Thursday.

Thursday’s hearing appointment was my 2nd appointment since going bilateral and my first post-activation appointment. I was going for my 2nd mapping and to have some adjustments made. I told Alyssa, the resident in training audiologist whom I’ve  been seeing for a few months now, that I thought I wanted more volume in my new processor, so she had me go through and listen to all of the sounds at varying levels again. She made some adjustments based on my responses. She checked my initial processor for my left ear as well since it’s been  I few months since we did it. She actually ended up turning the volume down on that one.

After adjusting the volume Alyssa asked me how I liked my current programs and which new programs I wanted. This was a pretty long process since I am only of the only bilateral patients at Jefferson with the new Q90 processors. Some of their patients have them, but it’s very rare to have 2 of those processors now since they aren’t widely available yet. She had to get the audiologist, Louisa, for help a few times since they haven’t made these programs before. I had her program me with the following programs:

  1. Everyday w/Auto Ultra Zoom
  2. Everyday w/Duophone/No Auto Ultra Zoom
  3. Background Noise
  4. Aquacase

I haven’t had to use the program for the background noise yet since I haven’t been in that loud of an environment yet. I did use the duophone once during a client call on Friday but it didn’t seem all that different to me yet. Maybe because I still need to work more to train my new implant. I will try the Aquacase on Monday when I go to the gym. It will be my first time using 2 Aquacases at the gym so I’m pretty excited to see how it compares to wearing just the 1.

Once we got all of the programs squared away it was time for my least favorite activity: a hearing test. She had me take off my left cochlear implant so we could just focus on my new, right ear.

First Alyssa tested me with just the beeps. I did very well with those. She didn’t write down the percentage and I don’t have my audiogram with me to look at it right now, but I know I scored right around the normal range with that which is great considering I’ve only been activated for a month. It was a good start.

Unfortunately, the test seemed to go downhill from there. After that we moved on to sentences. Alyssa played recordings and I had to repeat them back. I could pick out a couple of the words, but I missed a majority of the sentence. After doing some sentences we moved on to just words where I did even worst.

Being in that extremely small room and not being able to understand what was being said through the speakers gave me such extreme anxiety. It always does, but it’s the worst when you’re unsure of yourself and it heightens when you keep getting the words wrong. The more you miss them, the more anxious you become and then you simply get depressed. Hearing tests can be the absolute worst when you’re deaf or hard of hearing and it’s hard to really describe or have someone relate to that feeling unless they’ve experienced it.

The absolute worst part of the test though was what followed. After going through all of the sentences and words Alyssa instructed me to remove my right cochlear implant (while still keeping the left one off) and she tested me for the beeps again. I got maybe 2 pitches right when they were at EXTREMELY high volumes and that was only because I could feel the vibrations through the headphones. If it weren’t for the vibrations, I would’ve missed those as well.

I have no residual hearing left in my right ear. I knew that was a risk when I got implanted and I was more than willing to take that risk. However, I still expected to retain my residual hearing since I did with my first implant. The hearing I have now is far greater than what my residual hearing was (I only had about 7%, probably a bit less of residual hearing), but it was still hard to hear (no pun intended). Without my cochlear implant in that ear, there’s nothing there.

Alyssa calculated my word recognition to be 34%. She said she was happy with my progress and that I was right where I should be for being activated for only a month. However, all I saw was a 34%, which to me meant failing my test big time (think of it this way — when you’re in school and earn a 34 on your math test you’re probably less than thrilled…). I felt really depressed after that test and spent the rest of the day sulking and feeling sorry for myself.

My cochlear implant is a blessing and having 34% is a HUGE improvement for where I was, make no mistake. My mom and many other people in my life yelled at me for being so miserable and for being so hard on myself. But it’s hard to  make someone understand who’s never been through it. Yes, I know I’m right on track and I’m doing well blahblahblah, but it doesn’t always feel that way. It is frustrating to know you’re not hearing the right way. I have the volume in that ear but I don’t understand sounds very well yet. I can’t always make out words or sentences. I’m not on the same level with my left ear yet. I know it takes time, but it is so easy to become impatient.

I also feel a huge sense of pressure and like I have high expectations that need to be met. I myself set the bar high and have high expectations for myself. I know how well I’ve been doing with my left ear and I keep comparing everything to that ear now. When I received my first cochlear implant there was nothing to compare it to so everything felt amazing. It’s hard now that I know what to expect. It’s hard to remember that this is going to take time, especially because I expected things to be so much easier with my 2nd implant (which does not seem to be the case).

There’s also the issue with the people who never received cochlear implants and don’t understand how they work…which is pretty much everyone in my life. Everyone asks me about it constantly and “Can you hear me now” or “Wow, I bet you can hear really great now”, but that’s not always a yes…or at least not yet. Actually without the help of my left ear, a lot of things sound really weird with the right one now. Things still sound robotic. I still can’t understand a lot of spoken words. I might be able to hear you, but I probably don’t understand you as well as I want to. Trying to explain this to people is hard. There’s a lot of people that don’t understand and when you try to explain it they think “Oh, so it’s not working?’ No, that’s not right either. It is working, it just takes time. But it’s hard to explain it to someone who doesn’t understand and it gets depressing because it’s like a reminder that you’re not quite where you want to be with it. And you feel like you’re letting everyone around you down who thought you’d be able to hear and understand everything well right away. And then you feel like you’re letting yourself down, too,  because you’re  not where you want to be with it, either.

I really wished on Thursday that I had a bilateral (or even just plain deaf/HOH) friend to talk to. I mean I do have some that I met from the support group meetings, but they are all significantly older than me. I wished I had someone my own age, someone with a similar story, to confide in and to lean on for support. Because I think that’s the only kind of person that would have understood why I was upset and exactly what I was going through. I know these people are out there — just haven’t had luck actually meeting any yet lol.

The cochlear implant journey is not easy and it’s not a straight-forward path to success. It’s a rocky mountain climb and sometimes you fall down the mountain and end up in the slumps feeling depressed by the whole thing. But with hard work and practice, you will eventually make it to the top when you are ready.

I spent all of Thursday sulking. Then on Friday night I went back to practicing words with my mom and I got most of them right and I felt a lot better. I’m hoping to squeeze in some time to play with Angel Sound and listen to some sermons with just my one processor on to further help to train it. One thing that I forgot on Thursday that my mom reminded me of was that I didn’t get tested for words on my 2nd mapping with my first cochlear implant — I didn’t do that until 4 months after activated at which point I got a 68%. When you think of it in that light my 34% at the 1 month mark doesn’t sound bad at all. I really shouldn’t have been tested so soon for word recognition. But Alyssa didn’t know better I guess. But it’s only been 1 month and I’m already halfway where I was in 4 months with the first one. I’m not doing as bad as I think.

I’m not about to give up. I’m going to keep working until I end up where I want to be. This is a long process, and it won’t always be easy, but I know it will be more than worth it.


mom and i

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.

10690307_10205521321096013_1945841216633527358_n

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
  • O-town
  • Michelle Branch
  • Good Charlotte (x2)
  • Simple Plan (x2)
  • Forever the Sickest Kids (x3)
  • No Doubt
  • The Ataris
  • Yellowcard
  • 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.


Red-Lips-red-11662245-1280-800

Image Credits: Fan Pop

When I first got my cochlear implant I was told that it may make it so I don’t have to rely on lip-reading so much, but that I would probably still do it simply out of habit. They weren’t kidding about that.

Many people with cochlear implants do not want to have to lip-read and even become angry or frustrated by lipreading when they have a cochlear. I can kind of understand where they are coming from. They shouldn’t need to rely on lip-reading with a cochlear and also lip-reading can be exhausting! So I understand why people would want to not need it anymore.

I’ve had a very positive experience with my cochlear implant. Part of this positive experience includes not needing to rely on lipreading so much anymore. I can hear in the dark. I can hear when people are behind me. I can hear without having to look at people. These are all things I could never have even dreamed of doing prior to getting my cochlear implant. It certainly makes for a much easier, less exhausting, and more enjoyable life, that’s for sure!

However, some people see my lipreading as a habit that I should break, especially now that I have a cochlear implant. They are right in saying that I lipread out of habit. As my hearing aid audiologist, Sherry would say, “Lipreading has become my crutch because for so long it’s all I had to get me by.” Sure, I don’t need it so much now that I have my cochlear implant, but it’s definitely not a habit I plan on breaking anytime soon. Here’s why:

I wear my cochlear implant for about 90% of the day and 90% of my life. But there are still times when I can’t wear my cochlear. You may recall me discussing my trip to Six Flags Great Adventure. This is the perfect example. You see, I had to take out my cochlear and my hearing aid for most of those rides and I left it with my boyfriend’s mom. I wasn’t able to hear anything during those times. I have profound hearing loss — approximately 95-97% hearing loss in both ears. I still wanted to be able to communicate with my boyfriend during this time though. After all, some of those lines were very long (we waited over 2 hours to ride Kingda Ka…). I can’t hear any sound at all, but I was still able to communicate and have some small conversations with him. I also do not know sign language, so that definitely wasn’t an option. The thing that helped the most was being able to lipread. I was very thankful that day to have not lost this ability.

Having a cochlear implant means not having to lipread even half as much as I used to. This has been nothing short of a blessing for me. But don’t expect me to give up my ability to lipread altogether. There are times when that ability has become a blessing as well!