A few weeks ago I went to a cochlear implant support group. I’ve had some mixed experiences with these support groups. After attending my first one, I vowed I’d never come back. However, I since changed my mind and even had some pretty good experiences since then like the time I went to the cochlear implant support group about hearing preservation (and met the incredibly attractive Dr. Pelosi…but that’s another story ;)).
Since they have been getting better, I decided to make an effort to go to them on a more regular basis. The topic for the January 7, 2016 meeting was on training your implanted ear (or in my case, ears). Med-El was sponsoring the meeting and presenting and discussing their new training cds and books. Since I was just recently implanted with my second cochlear implant, I thought this would be a great meeting for me to attend.
I’ve always been a little skeptical of Med-EL to be completely honest. When it came to choosing a cochlear implant brand I narrowed my choices between Cochlear and Advanced Bionics. Med-EL was the only brand I was sure I DID NOT want because I felt they were too outdated. I always leaned more towards Advanced Bionics. Jefferson didn’t give me a choice so I was glad they chose Advanced Bionics for me, naturally, as it’s what I would’ve chosen anyway.
I had some faith in Med-El for this meeting though. I mean, aren’t all speech therapy training supplies essentially the same? How could you mess that up?
The presentation was given by a woman who worked for Med-El and who I believe was also a licensed audiologist at John Hopkins. She had one of her patients with her who was upgraded to a new processor and/or had a new mapping done that morning. They went through some words and she tried to demonstrate how the cochlear implant is a process and it’s not perfect, he might still mess up. It was a nice presentation, pretty accurate.
She also took some time to go over the new Med-El training book, cds, and online resources. She had a copy of the book. It was very expensive to buy (like $70) but said she’d leave a copy with the group and that we could make copies if we wanted, which my mom and I ultimately did. The book has been incredibly helpful/beneficial for us. That alone made going to this meeting worth it.
Towards the end of the meeting she went back to her earlier point on how cochlear implants help deaf individuals, but it’s not a miracle cure. We’re still deaf. She then used one single word to refer to us all that ruined her entire presentation for me:
She told us we were all handicapped.
I was enraged. We are DEAF but DEAFinitely NOT Handicapped!!!!!!!!!!!!!!!!
I didn’t just let this go, either. I made sure to talk to her at the end of the presentation to let her know I didn’t like that she told us we were handicapped. She apologized and said she knew and that she was really referring to children with multiple disabilities like those who are deaf-blind, deaf and autistic, etc.
It was a nice try, but I didn’t buy it because there wasn’t a single kid there and 90% of the adults lost their hearing later in life. I’m pretty sure none of us had multiple disabilities…it was just her cover.
There are few things in life that infuriate me more than being referred to as being handicapped because I am far from being handicapped. Most of us deaf individuals are always labeled as being handicapped and for most of us that couldn’t be further from the truth.
Deaf individuals like myself face a lot of hardships and much discrimination. We have to fight on a daily basis to have our voices heard and to be viewed as being equal to our hearing counterparts. We get denied employment, entrance into public schools and universities, and most of society tries to exclude us on the grounds that we are “deaf and dumb”.
I am a lot of things in life. I am far from perfect. I have done dumb things in life, but I am not a dumb person and I am far from being handicapped. I have NEVER once allowed my hearing loss to get in the way of my success in life.
I’m really not that much different from a hearing person. I don’t know ASL. I used to lipread (I still do, but I don’t HAVE to anymore). I speak pretty clearly. While I did attend speech therapy as a kid, my speech has never been that bad to begin with. I went to public schools growing up (which my parents and I had to fight very hard for as the school thought I was handicapped when in reality I simply couldn’t hear…). I played on many sports teams and was involved in many clubs. I attended a public university and earned an associate’s degree and later two bachelor’s degrees. Now I am employed for a digital marketing agency as a manager. I have had this job for 2 and a half years. I speak on the phone on a regular basis for work. I have no interpreters or special accommodations. I am really no different from a hearing person.
Society is constantly trying to put a label on deaf individuals and make us feel like we are broken or flawed or not worthy of the same opportunities as hearing individuals. “Handicapped” is far from being an innocent mistake or simply “just a word” used to describe us; it’s become a nice way of telling us that we’re “not worthy”, “not normal”, or “not good enough”.
Deaf individuals fight the stigma and the misinformation and all of these stereotypes on a daily basis. It’s rarely an easy fight. And one thing we absolutely don’t need is audiologists and representatives from cochlear implant and/or hearing aid companies fighting against us and feeding into the stigmas and stereotypes.
These individuals should be fighting alongside of us. They should understand us more than anyone and want to work to show people how the deaf really aren’t that different than the hearing.
Also, as is the case for this woman from Med-El, if you’re trying to sell us cochlear implants, you should speak in a way that gives us hope. Training your cochlear implant and your ear to hear is no easy task, as you’ve seen in my last blog post. It can be frustrating and discouraging. Labeling us as handicapped isn’t going to help matters at all, but it could make things worst. When you call us handicapped you remind us that we’re different, but if we have a cochlear implant it’s most likely because we want to hear and be like those that can hear, at least to an extent. Calling us handicapped can put a damper on all of that because you’re saying we’re different, we’re not able of doing something the hearing can do — we can’t hear. But the goal of the cochlear implant is to gives us what we don’t have that they do have — the ability to hear! Calling us handicapped is basically a nice way of telling us to not work hard and to just give up because we’ll never be like them anyway.
The idea that the deaf are handicapped is a lie. It’s a myth. It’s a diversion of the truth. It is not at all right.
To quote King Jordan, the former president of the famous deaf university, Gallaudet, “The Deaf can do anything but hear.”
We’re deaf, yes, but DEAFinitely NOT handicapped.
Got that, Med-El? Good.
My new silver cochlear implant!
It’s been 3 days now since I’ve had my second cochlear implant activated. Although I knew what to expect this time around,that doesn’t change the fact that it’s been a bit of an overwhelming and nerve-wracking experience nonetheless.
Activation date was on Wednesday, December 23rd…the day before Christmas Eve. I had Alyssa, the girl who is doing her residency (there were other audiologists around if we needed them…she’s not licensed but we specifically requested her since she’s been so excellent…we really like her) activate me. I couldn’t sleep prior to my appointment because I was way too excited. Getting to Philly was a bit of a challenge since it was raining and incredibly foggy. We couldn’t take the train like we usually do. My mom and I had my dad drive us into Philly. Traffic was bad since it was right before the holiday. We ended up being over a half hour late, but fortunately Alyssa didn’t mind. I don’t think they had many appointments being so close to Christmas…
My appointment was supposed to be at 9:30, but we didn’t get there until after 10. It was a fairly quick appointment. I believe she just used the same settings as were on my first cochlear implant. She played a couple beeps first and had a chart for me to choose whether the beeps sounds too soft, soft but comfortable, comfortable, or too loud. This process took about 10 minutes or so. I found that most of them were in the comfortable but soft or just comfortable range.
Listening to the beeps!
Once we finished with the beeps we moved on to basic sounds, expressions, and words. My mom asked me if I could hear her and if she sounded like Mickey Mouse so I laughed and said “Yes”. Her voice was very squeaky, just as it was with my initial cochlear implant, but it began to normalize quickly. Alyssa’s always sounded pretty normal for some reason. I guess her voice isn’t quite as high as my mom’s is or something.
I didn’t do too bad with the basic sounds like “oooo” and “mmmm” and “eeee”. Some of the words I struggled with especially colors like “purple” and “orange”. Those two were the hardest for me. It will take some time to adjust to and for sounds to be normal. My own voice echoed back a lot and sounded weird, but not quite as weird as it did with my first implant. I am unsure if I like the volume or not. Everything sounds so robotic and strange now that it is hard to tell.
My mom sounded like Minnie Mouse at first…how could I not laugh?
I have the new Q90 processor, so that alone may take some getting used to. While it’s similar to the old Q70 I initially started with, it still has some differences that take some getting used to such as automatic programming. However, this one is a bit different than the one on my left ear. I am back to having 4 programs and switching to a new one each week as my mind begins to learn and process the sounds. The Aquacase is not yet programmed. Alyssa said I need to get used to the other sounds first so it’s not too overwhelming.
Alyssa recommended that I wear my new cochlear for my right ear as much as possible so that I can train it. I wasn’t home very much on the first day. After my appointment I went to the Amish market, grocery shopping at multiple stores, to my hairdresser’s for a haircut, out for dinner, and walmart, so I wore both cochlears out most of the day. However, whenever I was home I took the old cochlear off. Everything sounded a little more clear on the first day then my first cochlear did, but still pretty robotic and strange. My mom’s voice was less squeaky, but my dad’s sounded pretty robotic. Most things aren’t clear, they just kind of sound like distorted noise. Music sounds absolutely terrible, as can be expected. However, if it’s a song that I’m really familiar with it’s not too bad. I listened to some old-school Kelly Clarkson and it was tolerable since I was so familiar with the song.
I spent much more time at home on Christmas Eve and Christmas. Now that I’m single, I don’t have to worry about going to a lot of different people’s homes. My family and I always did Christmas together especially since my grandparents passed; we aren’t at all close with any members of our extended family. So I spent most of Christmas Eve and Christmas with just the new cochlear on except for when I went to church. Everything still sounds pretty weird. I can only watch TV wish captions. I can’t understand people talking much unless I read their lips. I can’t distinguish where sounds are coming from or what they are.
I notice a big difference when I wear them together though. My left ear with my old cochlear implant is by far my dominant ear right now and almost completely overpowers my newly implanted right ear when I have both of my cochlears on. Things are definitely much louder and a bit more clear. Music sounded better at church, and I was once again especially mesmerized by the sound of the violin. High-pitch songs that I previously struggled to really hear like Silent Night sound better. I also noticed I mispronounce a ton of words because I never really heard the proper way to say them…
I am a little unsure of the progress I am making in general with my new cochlear implant. I feel like with my first one I noticed a huge difference on the second and third days, but I am not sure I see that with my new cochlear implant. I’m on day 3 and everything still sounds totally weird, robotic, and distorted. Unless I have my initial cochlear implant on, I can’t really understand anyone speaking or any sounds. My mom stood behind me and clapped and I didn’t really hear it; I kind of ignored it because I thought it was just my dad making noise in the kitchen…
I spent at least 2 hours today working to train my ear. My mom sat down with me and did a word list. I got most of the words wrong, even when I read her lips. I am hearing some parts of the words. Like I can pick out that there’s a strong P sound or a un in in the word somewhere, but I can’t usually get the full word yet especially if I’m not lipreading.
I also used the Angel Sound program to train my ear today. I spent most of my time on Pure Tone Discrimination and worked my way up to level 2. I also worked a little bit on Environmental Sounds and am almost but not quite ready for Level 2 of that as well.
I tried switching from Program 1 to Program 2 today wondering if that would make things better, but ended up switching back to program 1 as I felt like I was getting too much power/sounds in program 2. I’m not sure I am quite ready for that.
I’m unsure how well I’m doing. I feel like the progress was easier and quicker with the first cochlear and that scares me. I feel like I’m failing at this, but even if this is all I get with the first one, it’s still an improvement, right?
Maybe it’s all in my head. It’s easy to look at my first cochlear and see it as all a success, but I didn’t get there overnight. It took me months to gain the ability to hear on the phone and music sounded terrible then, too. But then I think back about Larry and I’s date to Smithville last year. We did that on my 4th day of being activated and I did so well. I could hear him in the car, I could hear music playing (although I couldn’t tell what it was), rubber ducks squeaking, and hold a conversation at Applebees. I had a hearing aid in my other ear, but that didn’t give me clarity or do much of anything. If I take my left cochlear off, my right ear can’t do these things yet. Tomorrow will be day 4. I feel like I’m behind where I was last year, but shouldn’t this be easier?
I know that this is a process and will take time, but I’m still really scared. My anxiety is at an all-time high.I am just waiting for my breakthrough and hoping that it comes soon. I’ve struggled to sleep because I want to be awake to train my ear and see if things get better and I can’t help but worry, What if this never gets better? I know I have a tendency to be an impatient person and this takes a great deal of patience. I also know I need to pray to and trust God more. He’s already given me amazing gifts with my first cochlear implant, and he will with my second one, too, if I just learn to be patient.
This training my ear to hear thing with my 2nd cochlear implant may be proving to be a bit more of a challenge than I expected. It may not be all of the happiness I was hoping it would be at the moment, but it will get better in time. One thing I know for sure is this: I refuse to give up. I will continue to work on training my brain to hear the sounds until they are better than I ever could have imagined. God has given me the gift, now it’s my turn to work to use it as he intended me to do.