Image Credits: Vimeo
Hey everyone and welcome to my new blog. Some of you may be following me after being redirected from my main blog, www.kimerskine.wordpress.com . I wanted to create a new blog that focuses strictly on my journey into the wild, wonderful world of cochlear implants though. So here we are!
Allow me to introduce myself. My name is Kimberly Erskine. I’m 24 years and currently living in a small township in South Jersey, just around 20 minutes away from Philadelphia. I am profoundly deaf, but living in a hearing world, just as I always have.Here is my (very long) story.
I was diagnosed with hearing loss when I was two years old. Obviously, I don’t remember anything about that (seriously though, who does remember their life when they were 2? lol).My mother tells me that she knew I couldn’t hear because her and my dad would talk to me and I wouldn’t respond. Everyone tried to tell her that I was just going through a phase,but my mom knew better (I have a really awesome mom by the way. You’ll be hearing a lot more about her awesomeness as you read my posts on this blog in the future). So she had me tested, and sure enough I had profound hearing loss.I got my first pair of hearing aids when I was three (my mom has been correcting me saying I was two, but I could swear it was three. Either way, I was very young).
I always lived in a hearing world. My parents always wanted me to live a normal life like other kids. I didn’t have anything wrong with me — I just couldn’t hear. I went to a public school just like “normal kids” do. My mother had to fight diligently for me to be allowed to attend normal classes. I was always very smart (even at a young age I was obsessed with reading!), but because of my hearing impairment the school wanted to place me in special education classes with a special IEP, which I did not want or need. My mother fought continuously and ultimately won. I attended regular classes for all 12 years of my schooling. My schools changed over the years — from West Deptford to Pitman to Woodbury — but I was never once placed in special education or given an IEP plan. I always managed to do the work like “normal” kids do and even took many honors and AP level classes my sophomore-senior years of high school.
My hearing aids and technology have changed a little over the years as I went to school. For the most part I always wore some form of behind-the-ear (BTE) hearing aid. This is due to the fact that my hearing is very bad and this is really the only hearing aid powerful enough for my hearing loss. However, I did try in-the-ear ones once. Never again. They were always in the shop more than in my ears! Turns out it wasn’t so much that they didn’t work — they just simply weren’t powerful enough for my hearing loss. I gave up on those pretty quickly and decided to just stick with my usual BTE’s.
My most recent pair of BTE hearing aids from Miracle Ear
I also had this atrocious thing called the FM Audio Trainer. My teachers had to be given a microphone that went directly to my ears. Whenever I had a substitute or switched classes I had to explain it to my new teacher or give it to them. It got in the way quite a bit too. More annoying than anything. I wore it from around 2-3rd grade before giving up on it. And yes, my classmates did look at me really weird and some of them did make fun of me for it. Thanks, guys.
The tiny wire from my cochlear implant will be nothing compared to these babies…
I was also placed in speech therapy from the time I was about 2 or 3 until like the end of 5th grade. We stopped then because they said it was no longer making a difference. My speech isn’t perfect, but for someone with profound hearing loss it’s quite good. Doctors keep commending me on it. My mom played a large role in my success with my speech as well. Even when I can’t hear how words are suppose to be pronounced (for instance Cherry and Sherry sound exactly the same to me), she corrects me and makes me say the words the right way. My surgeon, Dr. Wilcox, said it’s the best thing my mom ever did for me regarding my hearing loss. (Thanks, Mom!)
I got by pretty comfortably with my hearing aids. I did well in grade school and later went on to complete college. I earned an Associate’s in English from Gloucester County College in 2010 and earned my Bachelor’s in English and a second Bachelor’s in Writing Arts with a concentration in Creative Writing from Rowan University in 2012. This is pretty amazing for someone with my degree of hearing loss. It’s rare for people with hearing this bad to even know how to read or write, and yet here I am, a self-proclaimed book nerd and a writer. Funny how life works out sometimes, isn’t it?
I get by comfortably at work, too. I currently work as an Inbound Marketer, Social Media Marketer, and Freelance Writer for WebiMax, an internet marketing company. My work is very understanding of my hearing loss and it really doesn’t affect my work at all.
But I still live in a hearing world and have the desire to hear like everyone else does. I do not sign. I am an expert lipreader, which helps, but my life in regards to living in a hearing world — it’s a lot of doing the impossible combined with a lot of “just getting by”.
I have always been looking for ways to improve my hearing — but I thought hearing aids was always my only option. I thought that I could just keep upgrading and things would get better. But this too, was just another example of “just getting by” in life.
I was initially saving up for new hearing aids. I have been saving up for about a year. My new hearing aids were going to cost a little over $4,000 — none of which was covered by insurance. I asked friends to help me by making donation to my Go Fund Me fundraiser where I raised $200 and I did a lot of budgeting. My parents were always very weary of these new hearing aids though. $4,000 sure is a lot of money. And also, two years ago we made the decision to upgrade my hearing aids. The hearing aids I have now (Miracle Ear’s ME 31 SP) were said to make a huge difference — but they did not. And I was always very disappointed. I actually remember crying the day I got them because I was so disappointed — I could not hear. I went back a few days later to have them adjusted — but I wouldn’t say I noticed a huge difference — they really weren’t that much better from my last pair — and when you spend over $4,000 for a product — you kinda want it to be amazing. These weren’t. My parents were afraid the same thing would happen again if we went through and purchased another pair of hearing aids.
This is my audiogram from about a year ago. Pretty much beyond the point of fixing with hearing aids alone now. I had another one done a couple of weeks ago during my CI consultation at Jefferson where they said my hearing actually decreased a little bit.
In early September, after rescheduling a hearing appointment and ending up with an all-new audiologist, I learned that my parents were right to be weary. We sat down with the audiologist and asked her if she thought the new hearing aids were really going to make a difference. She was brutally honest. If there’s one thing I learned in the 22 years that I have been seeing audiologists — it’s that it’s rare to find a good audiologist that truly cares about the wellbeing of their patients and isn’t just looking to sell hearing aids. This audiologist was one of those rare kinds. Long story short — she said no, the hearing aid really wouldn’t make that much of a difference. But there’s something that would — cochlear implant surgery.
I wasn’t sure what to think when she first mentioned it. I couldn’t tell if I liked her or hated her. Cochlear implants is something I always knew about — but never knew that much about or perhaps never knew the right things about. They always terrified me. I thought that it was a form of brain surgery and if they messed up I’d lose all of my hearing and be screwed. But that dad God really spoke to me and told me I needed to do my research. And so I did.
I went home that day and looked up cochlear implant surgery online and joined several groups on Facebook. The information was a bit overwhelming and confusing at first, especially the more technical ones that came from medical journals. The thing that really helped me the most was the Facebook groups. I joined two groups that have been incredibly helpful — Cochlear Implant Experiences and Cochlear Implants R Us. I love being able to talk with the members who are currently or have gone through the same exact thing as me and hearing their own personal, real stories. To hear what their challenges have been, their questions, their fears and to be able to relate to them in ways different from how anyone else in my life can relate to me or I to them. These groups have answered a lot of my questions and made it so I wasn’t afraid anymore. Cochlear implant surgery isn’t a very dangerous surgery (it actually has like a 99% success rate and you can usually go home the same day). But it is a life changing one. And this is a change I need to make in my life now.
I’ve had a lot of my tests done already and everything is going well. I met with an ENT who said everything with my ears looked fine and referred me to a surgeon. I met with a family doctor who said I was perfectly healthy and there was nothing that could prevent me from getting surgery. A few weeks ago I met with my surgeon, Dr. Wilcox at Jefferson hospital for a consultation. I was very pleased with him. He answered all of my questions thoroughly and was very confident. I don’t think I have anything at all to worry about.
My mother has been on the phone nonstop in order to get everything done as quickly as possible. Last week the insurance company called to say my insurance for the surgery has been approved. Other than co-pays and fees, I really have nothing to worry about. Isn’t it kind of weird how insurance refuses to cover the cost of hearing aids, yet they will cover cochlear implant surgery? I’m definitely not complaining, it just kind of boggles my mind.
It’s all coming together so quickly and it’s so very exciting. On Thursday I have to get an MRI and CT scan done. I know they will be fine. I’m actually kind of looking forward to it. I think they are fun lol. I know — I’m weird. On November 5th I have my 2nd appointment at Jefferson for testing to see how I’ll do with a Cochlear and to view the models and choose one I believe. I’m about 90% sure I want to go with Advance Bionics (AB). My surgeon seems to be most comfortable and familiar with them as does all of Jefferson and reading about it it sounds really amazing. I’m also very interested in the water proof capabilities. It sounds amazing!
I’m so excited for this journey and I’m very blessed that the lord is giving me the chance to hear like a normal person for the first time in my life. There’s so many little things I can’t wait to do. Things like listen to the radio and actually be able to hear it, watch tv without captions, go to the drive in with my boyfriend (My boyfriend is really amazing and has been very supportive throughout this whole process by the way. He is an awesome awesome man and I love him), hear people in the dark, hear people in the car, hearing people without having to look at them/read their lips, hear in work meetings, and maybe even hear on the phone. I know that I won’t get everything right away. It takes a month for them to activate it after surgery and then you need to train your mind to hear all of the sounds which takes time and practice — but I’m still so so excited. If I could get this done tomorrow I swear I would.
I guess that about covers my long history and my journey into the world of cochlear implants. Stay tuned for more updates regarding this incredible journey that the lord has been so kind to give me!