Taking the First Step

I made the long traffic-filled drive to Bethesda MD for my Cochlear Implant consult today. My surgeon was nice enough but definitely has the personality of a surgeon very smart but a little bit arrogant. My audiologist is the amazing Dr. Schuchman who has been helping me out with my current cochlear implant. He has gone above and beyond with providing the latest and greatest up to date technology to provide the most quality sound that can be offered.

So many people are “stuck” with their older version of their cochlear implant. Oftentimes the a lower quality of sound or limitations of channels. It has been amazing to see how technology has changed over time.

This is a simulation of what cochlear implants sound like through various channels. The Freedom is a 24 channel implant as is the new Hybrid that I am currently scheduled to receive.  (Fair warning: this is a simulation not the quality of all people’s comprehension nor is it a guarantee that all cochlear implants sound like this at that level)

I am fortunate to have the opportunities provided to me that the quality of sound can be improved upon more and more. Dr. Rivera and Dr. Schuchman both answered a few questions that I had for my upcoming surgery.

Question 1: What makes this procedure different from the procedure done in 2008?

Answer 1: The intention of this surgery is to preserve the hearing I have now and add to it, the cochlear implant. In order to preserve the hearing I have there is are three precautionary measures taken: The first is the new internal hardware. It is shorter and smaller and will not destroy the working parts of the cochlea. The second is a new surgical technique. (Dr. Rivera did not elaborate on this…nor did I ask). The last is the addition of prescription steroid pills. I will be prescribed prednisone for a week prior to the surgery and a week after the surgery to reduce the risk of inflammation at the site of the surgery. This will protect the working cells from becoming damaged as a result of the surgery. Dr. Rivera had high hopes for this surgery and keeping what little hearing I have left.

Question 2: What kinds of accessories come with this cochlear implant?

Along with the external device, there are a few new accessories that come with the new cochlear implant. I will be getting a remote control that can control both of my cochlear implants individually (by changing the volume, the specific program, and the sensitivity). It will also come with an adaptor that I can plug into my iPhone and listen to music as well as an extra rechargeable battery. I will also be getting a voucher for something that hasn’t even been approved yet: a blue tooth adaptor. Essentially it’s a blue tooth with a hookup to my cochlear implant. How cool is that?!

An extra cool thing is that there are skinit.com stickers for cochlear implants …WHAT?! how have I not known this?

Question 3: What is the recovery time?

The recovery time hasn’t changed much in 8 years. There is about a two week recovery period along with frequent subsequent visits to the audiologist and surgeon to make sure everything is healing as necessary.

Question 4: When can we schedule the cochlear implant for?

As of now it looks like the cochlear implant surgery is scheduled for sometime between August 10-August 20th. School starts on August 25th so an earlier date would be better however it all depends on the surgeon’s schedule.

So what’s next? I need a CT scan sometime before the surgery and I will start pre-op preparation about a week before the surgery. I want to say that I appreciate all the support I have gotten from everyone!

 

 

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What the Future Holds

On Wednesday, I will be meeting my new ENT surgeon for my second cochlear implant. Well wait a minute Alyssa…You stopped wearing the one you have and now you want another one…To that I respond…you obviously haven’t read the previous blog post thoroughly enough. Nu.1: My decision My rules, Nu. 2: I do wear my cochlear implant and I am ready for the next step, Nu. 3: There are all kinds of reasons for people getting a cochlear implant, one of my biggest reasons is for preventative measures. 

I do worry sometimes that my first cochlear implant will short out or the internal piece will break and I may not have the benefit of the wonderful health insurance I have now. I’m hoping that with having my second cochlear implant, it’s almost like having a backup plan for the future. I also do wonder if my opportunities will open up with having this newer technology: will the phone be clearer? will music be more understood? will my hearing be more “normal”? I honestly won’t know until after the surgery. This is typical of any cochlear implant surgery.

Some people don’t know this but there are Three different manufacturers for cochlear implants in the world (Cochlear, Advanced Bionics, and Med-El). Each hospital collaborates with typically one specific manufacturer for their patients. My hospital and I believe most military hospitals collaborate with Cochlear. 

Cochlear recently came out with a brand new internal processor…well back up

Here’s a picture of the parts of a cochlear implant:Image

Now anyways: Cochlear came out with a new electrode array that is shorter than the one that is currently being used and allows for any residual hearing to be preserved in the ear. THEN they add a hearing aid into the mix. I hope I haven’t lost you yet, but as quoted from the cochlear hybrid hearing solutions website:

Cochlear Hybrid® Hearing is a unique combination of two proven technologies brought together in a single device.

It uses acoustic amplification to improve the low-frequency hearing you still have, while taking advantage of cochlear implant technology to restore access to the high-frequency hearing you are missing. Together, these two technologies give you a more complete hearing experience so you can hear better in noisy environments and understand speech more clearly.

This is my future…the very near future. I am so excited to share my journey with people everywhere. It will be a new experience for me and my family. It will be hard work especially with so much of the therapy happening during the school year but I know that if the work is invested, then it will be worth it.

 

 

Why I Stopped Wearing My Cochlear Implant

Before going to Gallaudet University, I did my research and found that many students and faculty alike did not like cochlear implants and anyone who had a cochlear implant was damaged or lacking in cultural understanding. This immediately scared me. Would I be able to make friends at Gallaudet or would I be rejected by my peers for using my cochlear implant?

I decided early on to stop using my cochlear implant when on campus for several reasons. Now before people start beating me up and criticizing my decisions, remember they are MY decisions. I do not walk around suggesting that people stop wearing their cochlear implants nor do I walk around suggesting that people who don’t have one get a cochlear implant. The decision to get/use a cochlear implant is EXTREMELY personal and should be respected by anyone and everyone.

The reasons I decided to take my cochlear implant off were understandable only after you’ve lived on Gallaudet University’s campus.

Number 1: I was a new signer and all the research I had done had told me the best and fastest way to learn ASL was to completely immerse yourself in the community. Many hearing people had gone so far as to buy ear molds that muffle sound and make it unintelligible to improve on their signing skills.

Number 2: Contrary to popular belief, Gallaudet University is a LOUD campus. Slamming Doors, Music that shakes the walls, Screaming and banging are just a few sounds I hear on an every day basis. It was distracting and annoying to have to listen to those sounds and fortunately I had the ability to turn it all off.

Number 3: When the campus is quiet, it is REALLY REALLY quiet. Imagine you’re in a room and there is no sound, no whispering or the low hum of voices. When the campus is quiet, all I can hear is the sound of pencils tapping, paper rustling, keyboards clacking and the AC running…Again…fortunately I had the ability to turn it all off.

Number 4: Last but not least, I was a little intimidated by the people who did not have cochlear implants. Were they judging me? Was my signing not good enough or something? Did my having a cochlear implant make them uncomfortable? Did they think that I was stuck up? All these questions wracked my brain my first and some of my second year of college.

These reasons were mine and mine alone. I started noticing throughout my years at Gallaudet that a lot of people had cochlear implants! A LOT! Some used theirs and some didn’t. I never felt it was my place to ask why people decided to use their cochlear implants. I should mention here that many people have reported to have had negative outcomes with their implants whether it was because the quality of sound was bad or the surgery was botched. Some people like me just felt more at peace and comfortable without wearing it.

Throughout the years after meeting my fiancee and making more friends, I became more comfortable with using my implant however one question I hate and still hate to this day is “OH you have your CI on? why? what for?” OR the alternate “Where’s your cochlear? Why aren’t you using it now?” Again like I said, my reasons are mine and mine alone. I have become more comfortable using my implant, I also enjoy listening to certain sounds. Sometimes a TV show will be on and I just want to hear the character’s voices. Other times I couldn’t care less if I heard something. I have noticed that in the past year, I have used my cochlear implant more often when I go to job interviews or to conferences because I do not want to always rely on an interpreter. I do not think there is anything wrong with those who need to rely on an interpreter or feel more comfortable communicating through an interpreter but that’s just not how I grew up. Going to school and sporting events, I never had an interpreter with me. Now in certain situations, I may request for an interpreter for clarity purposes but other times, I may use my cochlear implant for the feeling of independence and my own comfort.

I now know which situations I would rather be using my cochlear implant and in which situations I would rather not be using my cochlear implant. I have used my cochlear implant much more often in the past year or so than I have in a long time. It is still not daily but it is frequent enough that I am happy. When I get the second one done, I am fully aware that I will need to use them both in order to relearn how to hear and to successfully go through the therapy but like I have mentioned, it’s my decision and I am proud of the decisions that I have made.

In related news: My first appointment with the ENT surgeon is coming up VERY soon and I can’t wait!

Coming to terms with my deafness on a cultural level

I chose to attend Gallaudet University for several reasons. I wanted to meet deaf people, Gallaudet was a liberal arts college that had several programs I was interested in, and deaf culture there was rich (something I had since been missing). I started the application process in August and found out on my birthday (November) that I was accepted!

After receiving my acceptance letter, I was offered the opportunity to attend JumpStart. Jump Start is a program at Gallaudet that immerses new signers into a culture of American Sign Language to prepare students for the Gallaudet experience where all classes are taught in American Sign Language and deaf “manners” are to be followed.

The video above is one example of how deaf and hearing cultures clash. Hearing people think that deaf people’s facial expressions are funny or weird. Deaf people use facial expressions as a part of grammar. JumpStart gave us the opportunity to become culturally aware and to change our perceptions on cultural differences. The program also gave us the opportunity to hone our signing skills and signing development.

It was through JumpStart that I made some of the best friends I have in my life. I met one man who was joining the swim team like I was and we were able to support each other through our first year of school. My first year at Gallaudet was wonderful but it definitely wasn’t all fun and games. Part of being a new signer is knowing that you as a deaf person will be judged as “not deaf enough”. My signing wasn’t “fluent enough”, using the telephone on campus was a HUGE no-no but it was that freshman year that I started to find myself and figure out where I stood in the Deaf community.

Similarly to the black community, hispanic community and any other cultural group, there is a range of people who identify themselves as a part of that culture. For example, some people in the black community feel they don’t fit in because they are mixed race, others feel that regardless of their lineage, they are culturally black. This was the same for the deaf community.

I had to self-analyze constantly. Should I use my cochlear implant on campus? Is the use of my cochlear implant a way of me saying I’m not deaf like you? What if I used my voice on campus and spoke to friends who could also speak? Did that make me less deaf than others? What about my future as a deaf woman? What would I do if I had a deaf child? All of these questions reeled through my head all year long.

In October of my first year at Gallaudet, I met my very soon to be husband. He is deaf. He has used American Sign Language his entire life. He went to a deaf school for sixteen years (starting at age 2). His aunt and uncle are deaf. We were complete cultural polar opposites. Somehow we were able to make it work. It was through our relationship, my education at Gallaudet and the friendships I made here that I was able to stand up and say “I am deaf regardless of how I choose to communicate or whether or not I use my cochlear implant. I am deaf all the time not just when I’m at Gallaudet but when I’m at home with my family or when I’m walking down the streets of DC. I am deaf all the time.” I now consider myself to be an active member of a wonderful community. Yes there are still people who give me the stink eye for answering my phone or speaking instead of signing but I am always careful to respect deaf people and deaf culture.

Gallaudet University has given me so many opportunities that I definitely feel no other university in the world could give me. I found a community that I didn’t know I was a part of and am now working towards becoming a teacher for other deaf children. I also have become more aware of the way society views deafness. I am able to advocate for myself and others when I am out in public. I have learned not to pity deaf people and also not to allow others to pity me. I also do not rely on my cochlear implant to make me “better than”. Just because I have a cochlear implant does not mean that I am more capable than someone without a cochlear implant.

The above statement could be argued that having a cochlear implant makes someone “better than” in relation to the workforce but the fact is, there are reasonable accommodations that can be made in ANY field. Can’t answer the phone? Get a video phone or text! Can’t speak? Get a piece of paper or communicate via email. Accommodations do not have to be expensive but they do require people to have an open mind and willingness to put a little more effort into creating effective communication.

Through Gallaudet, I have become a more open-minded person and definitely a more culturally aware woman. I don’t think I could have gotten that experience anywhere else.

 

 

A Little Bit of Background

Ahh…College, the days of experimenting and exploring yourself and others. Most students probably use the phrase “find yourself” frequently in their college days. I was no different.

As a student at Gallaudet University, I was constantly questioning my identity. For those who don’t know, Gallaudet University is the premier college for the Deaf and Hard of Hearing. Gallaudet has been described as the mecca of deaf culture. I think I’m getting ahead of myself here…I’d like to share with you my first experience of getting a cochlear implant and then I can tell you all about how my life has changed at Gallaudet.

When I was fourteen, I got my very first cochlear implant (Nucleus Freedom for you curious fellows out there). I remember two very specific events from my first surgery. I remember the day I was activated, when they turned the cochlear implant on for the first time. Now there are youtube videos of people’s reactions to hearing their child’s voice or the sound of their name for the first time and weeping with joy. My experience was VERY different and it’s important that readers understand there is a wide variety of reactions to the activation of one’s cochlear implant.

The day I was activated, my parents were REALLY excited. For two weeks prior to activation I was rendered completely deaf and it was a struggle for my non-signing family to get their message across to me not to mention I was recovering from head surgery. They were anxious to get me back into the hearing world and to be normal again. The doctors warned us that it may not be a pleasant experience but nothing could prepare me for the absolute pain I had gone through upon activation. The doctor turned on my cochlear implant and immediately hated it. I heard, EVERYTHING. I was in a sound proof booth and I remember feeling like the sound of my doctor’s key chain was pounding into my skull. Everyone’s voices sounded like Marvin the Martian…what had happened to my mother’s beautiful soft voice or my father’s strong military tone? I immediately got into fetal position in my chair and had the absolute WORST headache I have ever experienced.

My parents had fear in their eyes. Had they made the wrong decision to get my cochlear implant? Would it ever get better? When we got home, I worked hard to wear my cochlear implant on a day to day basis. I tried my hardest to find sounds that I liked in my home. I knew that I HATED the sound of electricity running through the lights and how absolutely LOUD it was…don’t believe me? Sit in a silent room and just listen…it’ll take a while but for me, my brain was still trying to piece sounds together…what was important? what wasn’t?

It took a relatively good period of time for me to get used to the cochlear implant. Weekly visits to adjust the maps and constantly find the words to describe sound…how do you expect a deaf person to describe a sound? Is it good or bad? I don’t know I’ve never heard it before!

This brings me to my second experience … I remember it clearly. I was watching television with the volume so low that not even my hearing mother could hear it. I stood up to get a drink from the kitchen and mom was making spaghetti. “What’s that SOUND?!” My mom had been accustomed to me asking this and immediately had a worried look on her face…It’s fine, I’ll turn it down don’t worry about it, she responded. “No mom…I like it…what is it?” My mom’s face lit up with a look of pure relief. It was the water boiling in the pot and it was beautiful. From that day, I felt so much better about my cochlear implant and I was ready to take on the hard task of re-learning how to hear again.

I was ready to take on the world with my new Cochlear implant. Wow…what a long post. I wasn’t expecting this. Well I guess next week I can tell you all about how I ended up here at Gallaudet.

So I posted this blog on facebook and got really positive reviews however nothing caused me to react quite as strongly as this:  Lisa Stone Gleason: I think I’ll comment on these blogs…mostly because while you tell the story so well, I’m not sure it is in your nature to highlight just how strong you are Alyssa. When you say you were “recovering from head surgery”…I see you watching a similar surgery on the internet, the night before your own so you’d know what to expect! I see you in the front seat of the car, choosing to leave the hospital ON THE SAME DAY after a 6 hour grueling operation. I see your car seat laid back and your sister holding your head in her hands so you wouldn’t feel any of the bumps we drove over. I see you lying on the couch, head fully wrapped in bandages enjoying the time off to catch up on LOST … understanding the show only with the miracle of Closed Captioning. I see you with short hair you cut off your waist length hair to donate a week before surgery, because they were going to shave yours anyway. I see you SILENTLY sobbing two weeks later when they activated you … but then nodding quietly when the doctor told you that if you left in on, it WOULD get better, and you did… and it did. I see you cringing at dishes clinking together (still today) .. but standing over ANY boiling pot of water, because it sounds so beautiful to you (still today). I want everyone to see how deep your strength runs!!

Putting tears on my face at 7:30 in the morning. GO MOM!

 

 

Looking for Something I Didn’t Know Was Missing

Two years after my first Cochlear implant, I was doing FABULOUSLY! I had just finished my sophomore year of high school in Kailua, Hawaii and I was figuring out what I wanted to do with my life.

My dad, a United States Marine, got stationed from Kaneohe Bay MCBH, Hawaii to the Pentagon in Washington, DC.  This was our Nth move (I can honestly say I have lost count throughout the years) and for me, well that’s life. For 14 years, my sister and I had never complained about moving but you can bet your butt this was one move we didn’t want to make…seriously who wants to leave Hawaii?! But we did what we had to do, packed up and moved into a beautiful house in Springfield, Virginia.

My new high school was only a mile away from my house but that didn’t stop the school from recommending that I attend Woodson High School (a mainstreamed school with a deaf program) over half an hour away. Of course, I had been accustomed to that kind of attitude and simply stated that I did not have any desire to attend a deaf school when this school was so close and the appropriate accommodations would need to be made for me. (An FM system, Closed Captioning on the televisions, and speech therapy) After deciding that I would in fact attend R. E. Lee High School, it was time for me to choose my classes. It was determined that some of the classes I took in Hawaii would not transfer over to Virginia, so I ended up taking two science classes and two history classes in my junior year of high school. All I had left to decide was which language I wanted to take.

Lee High School at that time offered over five different foreign languages including Japanese and German. There was one class I wanted to take, partly because I thought it’d be easy, American Sign Language. Readers might be surprised to know that I had never used American Sign Language growing up. I had only taken one course when I was fairly young with my mom and sister at a community college for fun and I had a dictionary that I learned specific words from once in a while but I never became a fluent user of ASL simply because I never felt I needed it.

When I went to my first ASL class, I made sure to arrive before the other students so I could tell my teacher that I had hearing loss and would need some special accommodations made for me. She promptly looked at me and said, “so?” It took me a while to realize, Oh! it’s a sign language class, I didn’t need to hear in this class. It was determined that I would not use the FM and I would be watching films in ASL for the most part so Captions would be added for the benefit of everyone in class. I learned vocabulary, etiquette and deaf culture and it ended up being one of my favorite classes.

I didn’t make a habit of telling students that I was hearing impaired and typically tried my best to hide it from people ESPECIALLY because I was already the NEW girl…I didn’t want to be the NEW girl with the THING on her ear…and that’s me being nice.  One day in ASL, my teacher was explaining that there were deaf people who used American Sign Language and there were deaf people everywhere. One boy rose his hand and asked the teacher if there were any deaf people in our school and the teacher stared at me and said “I don’t know, are there?” That was my cue…I answered with “huh?” (I didn’t HEAR the question!) Then I realized what I’d missed and said OH YEAH! I’M DEAF! and everyone’s jaw dropped clear through the floor.

I had done such a good job of hiding it that no one even suspected that I had any kind of hearing loss.  From then on, I got all kinds of curious questions and comments. One of my favorites was “You can’t be deaf, you can talk.” My teacher spent a little bit of time talking about cochlear implants and the anatomy of the ear. She also talked to us about Gallaudet University, the only university for deaf and hard of hearing people. My immediate response was “WHERE IS THAT?!” I had never heard of Gallaudet, nor did I know where it was located or what programs were offered but I knew then that I wanted to go.

Can you believe it? Gallaudet was only a 30 minute drive from my home!

During the Summer before my Senior Year, I attended a four week summer immersion program at Gallaudet University to learn American Sign Language.  That was the summer that changed my life. Yes receiving my cochlear implant was pretty life changing but coming into my deaf identity where there was none changed my future.