Today I watched Heather Artinian’s Georgetown TEDxGeorgetown Talk, “Not the Hearing or Deaf World”. Heather Artinian was the star of the popular documentary Sound and Fury and its sequel, Sound and Fury: 6 Years Later. As the daughter of two Deaf parents, Heather grew up in Deaf culture and was taught to speak with ASL from an early age. Some of her other family members like her cousin were also deaf, however, they supported and got a cochlear implant (or two, not entirely sure to be honest). While Heather supported Deaf culture and was proud of her cultural heritage, she also had many hearing friends and was eager to be a part of the hearing world. At the mere age of 5, Heather knew that she wanted a cochlear implant.
However, her parents were not fully supportive of her decision. Instead of allowing her to get the cochlear implant, the family moved to Maryland which has many more Deaf individuals than her hometown in New York did. They lived there for about 3 or 4 years until her Mom got very sick and had to go back home to New York. During her time in Maryland Heather grew up in a comfortable Deaf environment where she was taught at a Deaf school and ASL was her primary language.
When Heather returned back to New York ASL was no longer the norm and doing the simplest of things like trying to order food from a restaurant was a difficult and frustrating experience for her and her family. Heather wanted to be able to communicate with her hearing friends and to be a part of their world. This is something I can relate to very much. I feel like in many ways Heather’s story is my story. Anyway, as Heather desired to be a part of their world she once again longed for a cochlear implant and this time her family didn’t fight it on it – they allowed her to get her first cochlear implant when she was 9.
Heather has since went bilateral and she is doing very well. She is a graduate of Georgetown University and currently attending Harvard Law school. In her talk Heather focused on bridging the gap between the deaf and hearing worlds and what I loved is that Heather isn’t concerned in being in either the hearing or the deaf world – she wants to be in the Heather world which is a little bit of each world.
Watching Heather’s Ted Talk honestly made me think about my own life and where I am with always having lived in the hearing world and now wanting to learn ASL. People think it’s weird that I never learned ASL and I never belonged to Deaf culture but I didn’t really know about it since everyone I know is from the hearing world so it makes sense that I would want to be a part of that world. Sometimes I feel almost guilty for not belonging to Deaf culture. I’ve had people in a round about way also say that I’ve turned my back on my own culture or I don’t even know who I am or am supposed to be since I’m so out of tune with Deaf culture. Then there’s another part of me that wonders if I’m doing a disservice by wanting to learn ASL. Is this offensive to the Deaf community? I went my entire life trying to fit in to the hearing world and going bilateral and I think being able to hear now is the greatest thing ever and sometimes it’s mind-boggling to comprehend that some people wouldn’t want to hear even if they have the ability to with cochlear implants…and yet here I am after going bilateral wanting to learn ASL and join in the Deaf world. Is this okay or is this cultural appropriation? Have I’ve been missing out on a big portion of my life by not belonging to this culture that I maybe should have been born into? Has my entire life been a mistake for choosing not to belong to this culture? There’s so many questions I don’t have the answers to and may never have the answers to.
Why do I want to learn ASL and why now? Maybe it is because I wonder if maybe I’m missing out on something. Maybe I do want to join in with Deaf culture or maybe I just don’t know yet but I at least want to see what is there. That doesn’t mean that I’m going to go against or abandon the hearing world I worked so hard to get into. It means that whereas Heather wants to live in the Heather world I want to live in the Kimberly world. I want the best of both worlds. I don’t want it to be hearing world and deaf world – I want it to just be 1 world where everyone can co-exist.
I loved Heather’s Ted Talk. I think she is a very smart girl (she’s studying Law at Harvard after all…) and what she says really makes sense. She doesn’t just reject the hearing world the way some Deaf individuals do (I’m looking at you…Mark Drolsbaugh…) she embraces it. Heather wants to make the best future for herself and she knows that in order to do that she needs to learn to adapt to the world around her and the world around her is primarily hearing. However, Heather didn’t forget where she came from. She was never about abandoning Deaf culture. I do get the impression she prefers the hearing world hence why she chose to live with her grandparents, attend a hearing school, and notably didn’t sign during her presentation, but it will always be a part of her and something she is proud of. Heather successfully balances both world to create one universal world that makes her who she is – Heather Artinian. I think we can learn a lot from her and I look forward to hearing more from her in the future.
I was so inspired by Heather that I sent her the following message on LinkedIn:
My name is Kimberly Erskine and I am an adjunct professor and graduate student at Rowan University in Glassboro, NJ. I was born profoundly deaf but always lived in the hearing world and got by with lipreading until receiving cochlear implants in 2015 and 2016.
For my MA project I am writing a memoir about my cochlear implant experience. I have been doing extensive research on Deaf culture and ASL as well. Some of my research involved watching both of your documentaries. I also just finished watching your Georgetown TedX talk tonight. I just wanted to say you are a huge inspiration for me and I believe many other deaf/Deaf individuals as well. I admire the way you chose for yourself which world to belong to – the Heather world – and how you’re working to build bridges in both the hearing and deaf communities.
I don’t think I ever had a choice but to belong to the hearing world. I was offered to learn ASL at a young age but declined because I didn’t know anyone who was Deaf and learning to adapt to the hearing world made more sense to me. I never knew that Deaf culture was its own thing. Once I got older and began to learn more about it it completely fascinated me though. I am trying to learn more about it and hoping to learn sign language (I am applying to take an ASL class as independent study this Fall) so that I can meet more Deaf people and communicate with them.
I can understand how challenging being in both worlds might be for you at times. Sometimes people look at me weird for never having learned ASL or belonging to Deaf culture. They think that means I don’t know who I really am or they don’t understand my sudden interest in Deaf culture now especially since I can hear with my cochlear implants. Maybe in some ways I’m also still trying to figure it all out. I really loved your Ted Talk though because it was so relateable to me. I saw a lot of myself in you and your presentation.
I honestly really hope Heather responds because I think she is really cool and would like to make friends with her haha. We shall see…
Hey guys! Happy New Year! I hope you all enjoyed your holiday!
I had a pretty enjoyable New Year’s with it being my first New Year’s as a bilateral cyborg! I didn’t have too crazy of plans. I always just stay in with my family and we eat 7 different types of Seafood at midnight as the ball drops and make predictions on the year to come and reflect on the year that passed. I also enjoy a drink. I’m not much of a drinker and don’t like bars, so staying in and just making one drink is more than enough for me.
Last year was my first New Year’s living in the condo in Washington Township, so I knew from last year not to expect much in the way of sound. Our neighbors are pretty quiet and boring; there’s no running out with pots and pains and noise makers at midnight like there was back in Pitman and Woodbury where I used to live. There’s not that much noise to hear on NYE’s at all, so I knew not to get my hopes up too much about hearing different kinds of sounds.
But overall I’ve noticed a huge improvement with my progress with my 2nd cochlear implant over the past week and a half. I moved on to program 2 on Wednesday and it sounded much more comfortable, so I’m gaining sounds with that. I have been practicing words with my mom and playing with Angel Sound diligently. I am almost on level 2 for all programs on Angel Sound now. My biggest struggles have been vowel and consonant (especially consonant) recognition so far, but they are arguably the hardest programs and I still feel like I’m making good progress on them. I feel much more optimistic with it now than I did when I was first activated. I am seeing that this is a progress that takes time.
Pastor’s oldest daughter, Jessica,has been coming to our church with her husband the past few week. Last week she played the flute during service. I have mentioned previously how I wanted to hear a flute with my cochlear, but this is one of the first times I’ve been up close and really able to hear it. I could distinguish it from the other instruments pretty well. It was so beautiful. I was completely mesmerized by it just as I was the first time I heard a violin at church after I was activated with my first implant.
On New Year’s Eve I went to the liquor store to pick up some drinks for the holiday. I went to Hops and Grapes in Glassboro and if there’s one thing I learned about this particular liquor store over the years it’s that you’re almost guaranteed to run into someone you know. First I ran into my childhood best friend, Zach. We were very good friends growing up; he was like a brother to me. This was my first time seeing him in about 10 years so that alone made my night.
Next I ran into someone from one of the cochlear implant support group meetings that I talked to a few times before. My mom spotted him first and said “I just saw another bilateral cyborg! We got to find him and talk to him!” because that is apparently what bilateral cyborgs do. I mean, we’re a rare bunch so when we run into each other it’s like “Hey, sup, bro?” lol. But no, seriously.
As we were looking for him he ran into us and pointed out my cochlears. I didn’t immediately recognize him from the meetings, and I’m unsure if he recognized me, so we kind of both played it off as having not met before. We talked about the progress with our cochlears. He received his 2nd one last March and his is also from Advanced Bionics so he was able to tell me about his experience and he said he had a bit more trouble training his 2nd ear as well but that it’s pretty much there now so that made me feel a lot better. I told him about the Q90 processor and how I like it. He’s due for his upgrade soon, probably in Spring. It was definitely a nice little conversation!
Thinking of the cochlear implant support group…I’ll probably be seeing him again this week! There’s a support group meeting on Thursday. Med-El is going to be talking about their new listening/auditory program which could be a huge help for me training my 2nd implant. I look forward to possibly seeing him again and attending the meeting!
I noticed on New Year’s day I was really starting to make progress as well. The weird thing with my 2nd implant is that I feel like I’m getting music quicker than I did with my first one. Sometimes I think I’m making more progress with music than I am with general words and sounds. However, as a huge music lover, I’m definitely not complaining.
Every year my mom watches at least part of the Mummer’s Parade. One of her relatives (I think her uncle?) used to be a member of the South Philly String Band, so she watches to root for and support them. I always kind of ignore it because I think it’s kind of boring (sorry, mummers!) but I noticed as she had it on this year I could hear the music better than ever. It sounded amazing. I watched Fralinger’s performance and could distinctively pick out the bongos (or whatever kind of drum that was) and the banjos they were playing. It sounded amazing. I don’t think I have ever been able to really hear and understand marching band music like that before. It was so exciting and made me want to hear more band music. I have to get to a Philadelphia Orchestra show after both my cochlears are fully trained — I have a feeling it will blow my mind!
I’m doing much better now with my 2nd cochlear implant and it’s starting to become a very exciting time for me. I go to program 3 on Wednesday and then there’s one more program left after that and then I go back to Jefferson for another mapping. I can see that I am progressing and I know that the best is yet to come.
Yesterday was quite the day.
I had my evaluation at Jefferson for my second cochlear implant. The day started out pretty well. I was off of work so getting to sleep in a couple extra hours was definitely a perk for one. For two, before I even left for Jefferson, they called me to let me know my insurance was approved.
However, there was a slight catch…
I had to meet the criteria.
I’ll be honest I completely ignored the part about meeting the criteria. After all, Dr. Wilcox did say during my last appointment that it was just a manner of “Crossing our t’s and dotting our i’s”. I knew that I was deaf in my right ear every bit as much as I was in my left ear that I already had implanted. I knew that none of this has changed in the last year. I knew that I didn’t benefit at all from my hearing aid (before I broke it I mean). There’s no reason why I shouldn’t have been a candidate…
However, they left out the part about meeting the criteria being based off of how well you do in the best aided conditions and that for me that would mean how well I do with one cochlear already on…
I had a new audiologist for my appointment since my usual one, Louisa, was on vacation. The audiologist’s name was Paula and she was working with her extern, Alyssa. She was a lot different than Louisa, but seemed nice enough. She said there was no guarantee I’d qualify, but we’d test and see.
I had to do a series of hearing tests that were identical to the ones I did last year for my first cochlear implant evaluation. First they tested me for being able to hear the beep with my cochlear and a hearing aid on (they had a hearing aid for me to borrow). Next they tested me with my cochlear and hearing aid on for sentences without background noise. Then they did it with background noise. The last tests they did were without my cochlear on and for both beeps and sentences.
I did okay on the tests with my cochlear. The cochlear in my left ear certainly helped,but I still didn’t have “perfect” hearing. I noticed that I couldn’t hear from my right ear. Having the cochlear in my left ear helped me with word recognition a bit, but no so much for general sounds especially softer ones and high-frequency.
I got a 73% for the sound and 99% on my word recognition with my cochlear. However, once they took my cochlear off I scored a 0. I am deaf in my right ear. I can’t hear anything at all. Excuse my language, but the direct quote from my audiologist regarding my hearing (or actually lack thereof in my right ear) is that “You can’t hear shit”.
The blue lines show my left ear without my cochlear. The red circles are my right ear. The S’s are where I am with one cochlear implant. What a difference! I can only imagine how great I’ll do with 2 implants if I can get insurance to approve it!
Unfortunately, the FDA says that in order to qualify for this surgery, I have to score a 60% or below in the best aided conditions. Since I score 73% I did too well. That doesn’t mean though that I can’t get the surgery. I had to have Dr. Wilcox and my audiologist, Paula, submit a pre-cert. What this does is explains the test results and why they still believe I would benefit from getting my second cochlear implant and why they recommend it.
They also had me fill out a quality of life survey to submit to the insurance company. This tells the insurance company a little bit of information about how my hearing loss affects my daily life. It asked me about how I perform in social situations, what my dating life was like, how I viewed and felt about myself, etc. I explained how I sometimes skipped social events if I thought it would be too awkward or too loud and I wouldn’t hear well enough. My love life? Yeah my hearing has definitely mad an impact on that. I was in an abusive relationship in the past where my ex would yell at me and make me feel bad for my hearing all the time. My most recent ex was pretty good with my hearing (FYI, that guy I previously wrote about a lot? We just broke up. But that’s another story), but that’s not usually how it works.
Dr. Wilcox went ahead and scheduled my surgery. He said this would force the insurance company to act and make a decision about whether or not they’d cover my surgery. However, we had to schedule it out far in advance (not as soon as last time — last time we scheduled it exactly 1 week after my evaluation!) to give them enough time to make a decision.
So my (tentative) date of surgery is………………………………….
December 14th! If this date remains and insurance is approved I will have my implant just in time for Christmas and will have my stitches out (and be able to wash my hair — thank god lol) the day before Christmas Eve. The receptionists who scheduled it said if insurance approves my surgery before that date we can always move it up though which is what I plan on doing of course.
I also have to go back for pre-testing on December 2nd like I did last time. Exact same procedure.
I didn’t pick out a color for my cochlear or what accessories I want yet, but if it gets approved I will. I’m leaning towards silver. I definitely want a different color from the caribbean blue that I already have. I can never match or be normal of course lol.
I’m feeling a wide range of emotions in regards to my testing. On one side I’m disappointed because I thought for sure I’d be eligible with no questions asked and schedule my surgery right away. But on the other hand I feel blessed to have scored as well as I did on my test. To have 30% hearing is a miracle to me. 73% is something I never imagined I could possibly have. If this is the most I’ll ever have, that alone is a true blessing.
All that I can really do now is just pray and hope for the best. I put it all on God’s hands and trust that he’ll lead me down the right path. It’s as my pastor tells me, the Lord already has the answer and knows what is best for me and he will reveal all of his incredible plans for me over time.
Please continue to keep me in your thoughts and prayers during this time. I do still have a good feeling about it because I know my surgeon is a strong advocate for it. He definitely supports me getting a 2nd cochlear implant and I know that he was making sure to carefully word his pre-cert for the insurance company. Also, my surgeon is a Christian that has called me on a Sunday before my first surgery in the past to pray with me. I know that prayer can make all of the difference in the world right now.