TWO YEARS DEAF /SIX MONTHS HEARING ANNIVERSARY
“Silence is still golden.” A few years ago from this month I woke up and sound was gone. I lost my hearing permanently and without reason. The only thing the doctors can think of was multiple ear infections. I stopped asking the questions “Why me? What now? How?” After wasted hours trying to find answers to those questions, I concluded that being deaf is not the worst situation I could face and that I needed to live with my soundless world. I learned a lot about deafness from talking with my new online friends, reading other blogs, and reading books. There are a lot of stories similar to mine, and some that are much worse. I had my hearing for forty years, and I’m thankful for that. I missed the sound of rain, even the sound of the toilet flushing, and the whisper of my wife’s voice in bed. We take sound for granted. We are so busy talking or busy with our electronic devices that we block out the sounds of the larger world around us.
Hearing aids are a deaf person’s best friend. The newer, smaller hearing aids are amazing, allowing you to stream wireless devices directly. Hearing aids are available to those with slight to severe hearing loss. I wore hearing aids for four months, until my hearing loss grew worse and their effectiveness declined.
Thanks be to God for the next best thing – cochlear Implants. I was implanted on November 1, 2013, and three weeks later my electrode, the device inside your cochlea, was turned on. WOW! The difference was incredible. I adapted quickly to the new technology and now have hearing that is as close to normal as possible.
I do have a few advantages over hearing people:
1. In a loud environment hearing people struggle to block out sounds. My implant allows me to focus on one voice and diminish others.
2. You have to put in earplugs to block out loud, annoying sounds like a dog barking, loud music, or crying babies. I just take off my cochlear implant and silence is back.
3. You have to put something in your ears to hear music. I just Bluetooth my music to my ear. Convenient.
4. I don’t need to argue with my wife and kids anymore because I can unplug. You can’t.
I am fortunate to have been without hearing for a short period of time. I am thankful I found Advanced Bionics, who manufactured my cochlear implant, as well as a trustworthy doctor.
Last year I wrote a blog post called My Thank You’s and to this day it is one of the best posts I’ve written. This year I have a few more “Thank You’s” so here they are:
1. I am thankful for the technology Advanced Bionics has developed to give me the gift of hearing. I had my cochlear implant surgery November 1st and the device was activated on November 22nd. I was hearing sounds and words and understanding every bit of it. You can see the video here: Jeff's Activation.
2. Thank you to all my family and friends who texted, Facebooked, emailed, and came to help me out during my surgery. I really appreciate all of you. Those communications made a world of difference. I am amazed at how much support I have around the world.
I am most thankful for Deaf-Insight and what Monica Hood has created to keep us connected so that no one has to feel alone. I started with Deaf-Insight in October 2012, six months after going deaf, and I enjoy writing from my heart to let others know that being deaf is not the end of the world despite its challenges.
I will no longer be writing for Deaf-Insight so others can share their stories. I have enjoyed writing stories and reading each comment, making you laugh, and sharing my frustration and triumphs with you. I am thankful to Monica for giving me the opportunity to be part of Deaf-Insight. She has gathered a group of wonderful writers to educate, give hope, and provide support. I am not done writing, and once in a while I will post a story as a guest on her website. Thank you Monica for everything.
I want to wish everyone a wonderful 2014. When you have a moment you are welcome to stop by and visit me at World of Silence.
I have been deaf for two years. I lost my hearing suddenly as the result of a massive infection following years of sporadic ear infections. I never got my hearing back and after using hearing aids for a short time they became useless.
Nobody plans to go deaf but things happen. I accepted my deafness and decided to be positive. I did whatever I could to learn about my deafness and welcomed new ways to communicate. When I lost my job and had to consider the prospects of new employment with a severe hearing loss while my hearing aids became less and less usable, I decided it was time for cochlear implant. I wanted to hear my family’s voices, listen to music, and be more employable. I am friends with many deaf people and they live happy lives without cochlear implants. I have to say that its available but not for everyone. Getting a cochlear implant is a big step and a personal one. Even though I have a cochlear implant now, I am still deaf. I can switch off my device anytime I want and have the world go silent or turn it on and listen to everything.
It is DAY 4 after surgery and as you can tell I am feeling better. But here are my thoughts:
1. “It feels weird having metal in my head.”
2. “This tinnitus is driving me crazy.”
3. “Nobody told me about drainage.” BTW, I don’t like fluids.
4. “I thought it would hurt more”
5. “I am so tired. I feel like sleeping all day.” I am glad I didn’t plan school or other activities during this recovery time.
6. “I am so ugly.” Yes, I am vain. I didn’t expect my head to be shaved quite so extensively so that my 8-10 stitches are highly visible. I want my body back together like before. My daughter thinks I look like the characters in the movie Coroline who’ve had new eyes stitched on with thread.
I think she was being kind in calling me a stitched-up person. I feel more like a:
As you can see I am in good spirits. I am glad to have my mom here from Arizona to help out while my wife goes to work and takes care of the kids. I go back to see the doctor on November 15th to have these stitches removed. The exciting day will be November 22nd at 4pm (EST).
“I think music in itself is healing. It's an explosive expression of humanity. It's
something we are all touched by. No matter what culture we're from, everyone
Deaf people hear music. How? We feel the beat. We see the expression on peoples face. We read hearing people’s lips to catch the meaning. It is impossible to go places and not hear music. Music is blasting in the malls, stores, theaters, schools -- almost anywhere you go there is music. We can’t live without music. We are connected socially by music. I have yet to hear the music industry take a downfall and it’s because people can’t live without music.
There isn’t a moment when I am unplugged. Sadness comes when I really want to understand the words when I’m not listening to Electronic or House music. Think of trying to read your favorite book but you can no longer see the words That’s what it’s like for me.
BUT NOT FOR LONG.
The first thing I am going to do when I get my cochlear implant activated is listen to music. I know I will have to practice listening to words again and matching it with the beat but I will be a
KAREN'S THOUGHTS ON JEFF GETTING A CI
"From the moment he went deaf, Jeff has been researching cochlear implants. By now
he’s an expert. He’s done a great job without them. For a while the hearing aids worked well, and it took some of the stress off at his job. But then his hearing started going downhill again. We learned sign language together, and we can communicate to a certain extent. But I will never be that fluent - not enough to share my deepest thoughts and concerns. I can ask what he wants to eat, if he’s tired, what he wants to do. It’s utilitarian. But it is not my first language of emotional and intellectual communication. I will be very glad to be able to just talk.
Before he went deaf, we had been to a few music concerts, something we had not done before. We were listening to new music together. I’ve missed that, and I know he has, too. Recently I started listening to a podcast and I though, oh, Jeff would enjoy this. But of course he can’t listen to it.
There are many small things that come up - trying to talk on the phone, making sure that I fill in if someone asks him a question he doesn’t notice, remembering to not turn away when speaking or call out from another part of the house. And I really hate that in the dark both sign language and speech is useless. Lately I’m the only one who hears the ominous sound of the cats throwing up at night. That won’t change, of course, since he will always be able to switch off whenever he likes.
My greatest hope, though, is that the CI will allow him to pursue the career he wants - teaching. I also hope that he will continue to sign and be part of Deaf culture, because I know that’s important to him, and I think he has a lot to offer both hearing and Deaf cultures."
Lizzie (13 year old daughter) writes:
"I am extremely excited for my dad getting a cochlear implant. I’m worried that something might go wrong, but other than that, I’m thrilled. Once he’s able to hear, he can’t just turn away when he doesn’t want to listen. I won’t have to tap on his arm every time I want to speak. I think this will bring our family closer since it will be easier to communicate. I hope the cochlear implant will live up to his expectations, since I know it won’t be the same as before."
Abby (11 year old daughter) writes:
"I want Dad to hear me laugh and I also want him to be able to hear Dito (our cat) say
“meow” all the time, because it’s very annoying and I wish he could make it stop. I want him to hear me play the clarinet. And also so he can watch a movie without captioning. I will be able to talk to him without having to repeat myself all the time."
After visiting all the doctors and several audiologists here in Georgia and not being pleased with most of them I decided to go out of state to visit a doctor that came highly recommended. I made a good choice. The doctor was knowledgeable, experienced and answered all my questions. The good thing is I can keep the CI audiologist here in Georgia, which was really important to me. My audiologist, Dr. Erin Rellinger, from Auditory-Verbal Center, has been so patient and helpful. It was important to me to have the right device from Advanced Bionics, and my new friend Edie Gibson, from Advanced Bionics, helped me find an out of state physician. I am pleased to say my surgery is scheduled for ALL SAINTS DAY. I hope I am blessed, that God looks down from Heaven and there are no issues with surgery. Now that I have the hospital, the doctor, and the audiologist on board I can rest and wait.
I miss the ability to understand what people are saying. Reading lips is hard work. My wife and kids are probably tired of me saying, “Please repeat”. I don’t make them sign enough but with the cochlear implant technology and ClearVoice to improve my poor speech recognition I will be able to hold a conversation with anyone in the hearing community. But, there is something my family and friends (offline and online) need to understand. A cochlear implant is an assistive device; it doesn’t make me a hearing person. When I put on my device each morning it will help me enter the hearing world, but that is not the same thing as being a hearing person. I will be deaf the rest of my life and I accepted that a long time ago. But, here are some of the things I am looking forward to when I get activated, meaning when my device gets turned on by the audiologist:
1. Understanding what people are saying around me or one-on-one.
2. Music - I still listen to music now with my hearing aids but I miss the words.
3. Cellphone - to hear a phone call on my cellphone and stop telling people to call my Caption Call phone. Texting on my cellphone is great but I want to dial and hit the send button.
4. Hear my family. I hear sounds but I really struggle with my daughters’ voices.
5. My cats - to hear them meow when I walk into the house.
This week I picked out my color. Yep, I went with a crazy color. I also got a black one as my backup. The kids in my school are going to love it when I start my student teaching.
Please stay tune to my next BLOG. I have 3 special guests posting and you don’t want to miss their message.
Expectations, we all have them. We may not like knowing we have them but we do. We
expect our alarm clock to go off at a certain hour so we can jump into the shower. We expect our children to behave a certain way during dinner when you have guests. We expect our pets to not bark or bite visitors. We expect our bed to be comfortable with big fluffy pillows so we can drift into dreamland in under five.
verb: expect; 3rd person present: expects; past tense: expected; past participle: expected; gerund or present participle: expecting
1.regard (something) as likely to happen.
2."we expect the best"
My expectations on September 16, 2013, walking into the CI surgeon’s office were that my surgery would be scheduled and I would be out of the office in less than 45 minutes flat. I added the extra 15 minutes since it was on the 9th floor. No, my expectations got the best of me and I ended up snared in hospital politics with an audiologist that didn’t know much other than why I
should not like the product I was wanting to implant. I thought the position of an audiologist was to help a deaf person restore hearing using the best technology to meet his or her needs, not to have a product debate. I had to pull in more powerful people than me to help me get what I want. Now I have expectations of Advanced Bionics. If they don’t come through for me here in Georgia or I will have to go somewhere out of state for surgery. I made my phone calls to Advanced Bionics and I will find out next week what happens over at Emory Hospital Midtown.
My final thought is this - hope more, expect less.
A few days ago my wife blogged about my crazy schedule and indeed she is correct. I thought being unemployed was going to be sitting around watching Netflix and drinking Starbucks all day but that’s not me. If you didn’t read her blog please do - she is an amazing write http://badalice.blogspot.com/.
It didn’t take me too long to figure out what I wanted to do next, because I have for the past several years been wanting to TEACH. I was actually three-fourths of the way through a Master’s program in Elementary Education when I stopped because I would be required to drop my paid work to take on unpaid student teaching. My family needed my support so I put off that dream. Instead I got a Master’s degree in Educational Technology. Guess what? I no longer have a job that demands meaningless work. Now I can focus on something I have been wanting to do for years.
I love kids. I love learning. I love teaching. My mind is always
turning. I am always on the Internet learning about new things. I
love education. I will be a great teacher.
But, I have to fix my ears because I can’t understand a word when I’m doing classroom
observations, or when I try to talk with classmates or my college advisor on the
phone. I hear noises but not speech. But, no worry. I pray my
surgery date for CI will be soon.
I want to hear!
I can’t stand my hearing aids. I have reached the point where I can’t hear anything but static even with the multiple adjustments I have received. My wife and I went out to dinner the other night and I wore my hearing aids so she wouldn’t have to sign all night long. She gets tired signing and at times I do too. But I had to keep asking her to repeat what she said. I was so
pissed that I ripped my hearing aids out and put them in my pocket. It is so much easier for me to lip-read with no hearing aids or sound at all.
My doctor says it is time to consider a CI (cochlear implant). I can't even hear with my hearing aids anymore. By the time this gets posted I will have had my CI evaluation, which is the determining factor. I didn’t qualify at the last evaluation because the audiologist wasn’t
thorough and the doctor simply didn’t want me as a patient. I just learned a new hearing term called auditory fatigue. My hearing gets really bad as the day progresses, so having a CI evaluation at 3 pm rather than in the morning makes more sense. Even after I get a CI, I will still consider myself deaf. Please understand that a CI doesn’t fix me. I will not hear the way a hearing person does. I want to continue signing and participating in Deaf culture. But the CI is a better device than my hearing aids if I want to participate in hearing culture. Here are the reasons I want a CI:
1. I want to hear my daughters’ voices, especially before they graduate. Fine! - my wife’s voice, too.
2.Having a CI will open up more options as I change careers. (BTW, my next blog post will be about my career move and hearing).
3. I miss music.
There is some contentious conversation in deaf cyber chat about whether deaf people should have CI’s. I have had mixed feelings, but with the progressive deterioration of my hearing over the past six months and my recent layoff, I’ve had time to reflect on my future. Getting a CI is a personal choice based on what each person needs to follow his or her particular path. The deaf community should not look down on or shun a CI recipient. People with CI’s should in turn be accepting of those who don’t want to wear anything at all. Keep signing and learning about Deaf culture. We all have to remember that once you lose your hearing it is gone. You are deaf. The only difference is that some people - for any number of reasons - want to use devices that will help them hear sounds.
We are all on the same boat.
"It is our choices... that show what we truly are, far more than our abilities."
J. K. Rowling
“Choices”, a powerful word. When I was working at my previous employer I saw many
paths but ignored them. I made a choice not to go - to play it safe. Maybe there are voices in your head or there are some people out there saying “you are crazy to think of doing XYZ,” but in your heart you see a path. We all have this amazing gift called “choice”.
When I lost my hearing I made the choice not to panic and investigate how to cope, how to get support, and how to find the best technology to get some sound back I am not really talking about the small choices we make daily (though I don’t minimize those because for some getting out of bed is not easy), but the big ones like changing career paths or getting married. When we face an important decision, we need supportive friends to help us make the right choice. In the popular film and book series, Harry Potter had to make some difficult choices. Did he make those choices alone? Do you think it was easier for him to chose which path to take having his supportive friends there with him?
Last Thursday morning I received a text message from my manager asking when I would
be coming into work. I thought it an odd message since she knows my schedule. Moments after I arrived at work my position was terminated. I was one of many laid off that day. Now, I could get really upset and put up a fight. I could say they didn’t give me sufficient accommodations. But when I look at the whole picture my company gave me a lot, and I am thankful for that. When we chose to see more than one path we gain so much more clarity about our present state of mind and sometimes our future. I feel sad when I hear people bad mouthing past companies or even relationships - just move on.
My challenge to you this coming week or month is to seek paths - more than one.
My name is Jeff Swartz and I live in Atlanta, GA. I am married to wonderful wife and have two teenaged daughter.