Author Archives: Chris

Batteries not included…

It’s hard to believe that my last post was almost two weeks ago. I’ve started getting emails asking if everything was alright and asking when to expect the next post. Long-and-short everything is going much better than expected! I will fill you in on the details of what’s happened the past two weeks in my next post. Most importantly, thank you for your kind emails and comments regarding my recent posts and getting the device turned on. I’ve missed writing!

This post is just a quick update on the technology front. The items on the table in the image below include features, programs, batteries and plugs I use to communicate – including all the periphery gadgets required for my cochlear implant device. Below this image is a short description of each of the numbered items, to give you a sense of how “connected” I truly am…

Batteries not included...

(1) Smart Phone: Text; Email; Google Hangout (chat); WordPress; Facebook; Twitter; LinkedIn; and phone. This Smart Phone is also linked to my Cochlear Implant device (6) via Bluetooth technology so I can hear on the phone (talking is easy…). Plug required to charge phone battery.

(2) FM Listening device: Connects to my Cochlear Implant device (6) via FM signals. The FM device is perfect for group meetings where the device microphone can be placed in the middle of a conference table or held by individuals sitting across the room. Their voices are transmitted from the microphone directly to my processor and it is as clear as if they were sitting right next to me. A nice feature is the listening range. For example, I can leave the device in the conference room, step into a nearby restroom, and still hear what everyone is saying. Could be handy at times… Plug required to charge FM device battery.

(3) Electric dehumidifier with fan: The processor (6) is placed in this dehumidifier every night to ensure all moisture, etc. Is sucked out of device. Plug required to run fan.

(4) Battery charger for external Cochlear Implant Device: My processor (6) has two batteries – The larger one has a battery life of seven hours while the smaller one has a battery life of four hours. When the battery begins to die I hear a warning beep. If I don’t take it out, I hear a second beep. If I still don’t take it out I don’t hear a third beep; instead I hear nothing at all. This charger has four battery charging slots which I am beginning to think I’ll need in order to get through the day. When the battery is charging it has a blue color shining from its slot. When it is fully charged the slot has a green “go” color. Plug required to charge device batteries.

(5) Pebble Smart Watch: This little device has already proved to be quite handy. First, it includes a vibrating alarm to wake me up in the mornings since I don’t have my device on. Second, the watch is connected to my Smart Phone via Bluetooth technology and will vibrate every time I get a text, calendar appointment notification, or email. I turned off the option to be vibrated every time I received an email since I would be buzzing all day long… Plug required to charge Pebble Watch battery.

(6) Cochlear implant device which includes microphones, processor and transmitter: This is the key external device that connects me to the hearing world. An amazing piece of technology from Advanced Bionics. Please note that I no longer hear anything through my ears; rather, the microphones are picking up sound and translating them to digital signals that run through the processor to the external transmitter. This transmitter connects to the internal receiver and stimulator or me (7) and is held in place with magnets; some located on the transmitter which connect to a magnet located under my skin on the receiver. Charged battery (4) required.

(7) Me… which also happens to include the receiver and stimulator located under my skin: This is the key internal device that connects me to the hearing world. Another amazing piece of technology from Advanced Bionics. Recap based on my understanding to date: from the external microphones sounds are converted to digital signals in the external processor. From the processor these digital signals are sent to the external transmitter, then to the internal receiver, then to the internal stimulator. Electrodes from the internal stimulator make their way through a hole drilled in my skull, to the cochlea where these digital signals are then relayed to my brain. Please note that my head is propped on the end of the table because I am now officially part of the digital equipment category. No batteries required – just food and water.

(8) Glasses: This instrument is not exactly new, nor is it digital; however, it is important for keeping me in the hearing world. How so? Without my glasses I wouldn’t be able to read lips! Although I can hear a lot of what people are saying, it is not perfect. I still rely on lip-reading to help put the pieces together. For example, the other day I got my hair cut. The person cutting my hair asked me to remove my hearing device. He then instructed me to remove my glasses. I said, “wait a minute, I need my glasses to hear you!”  No batteries required.

(9) Computer (Mac Air): Email; Google Hangout (chat and video); WordPress; Facebook; Twitter; LinkedIn; GoToMeeting (video); FaceTime (video); Texting (Mightytext). Video conference calls help because I am able to read peoples’ lips. Plug required to charge battery.

(10) Ipad: Email; Google Hangout (chat and video); WordPress; Facebook; Twitter; LinkedIn; GoToMeeting (video); FaceTime (video); Texting (Mightytext). Video conference calls help because I am able to read peoples’ lips. Plug required to charge battery.

(11) MyPilot: A remote control to manage a number of settings for my external device (6). Plug required to charge battery.

(12) Backpack: Advanced Bionics provided this backpack as part of my cochlear implant device bundle. At first I thought,”why the heck would I need a backpack.” Well dear reader, as you can see from the devices spread across the table, this backpack, which includes many pockets (10 external pockets and a slew of internal ones), has been quite useful. No batteries required.

Take-away: I can’t be too far away from a plug; Camping is not a high priority; I would be in serious trouble in a post-apocalyptic world without electricity. Then again, I guess everyone would be in a world of hurt so not hearing might actually be an advantage…

Can I hear you now…? Yes I can!

Today was the Big Day; D-Day or Device-Day. Roxanne and I went to the audiologist’s office for our 1:00 PM appointment. I must say, the past couple of day’s I’ve felt rather anxious and excited about getting the device turned on; not knowing what to expect. And this morning I was on pins-and-needles waiting to get the device turned on…

My audiologist, Rosie Christal did a great job today! She first sat me down and communicated with me by typing in very large font on a computer screen on what we were going to do. She explained via computer text to not expect a lot today and that the voices will likely sound like Darth Vader, Donald Duck or Mickey Mouse. She then said that time and patience were on my side. I mentioned in my last post that I would go in today with no expectations.

The first step was to snap the external headpiece magnet (Image 1) to the implant magnet located under my skin (Image 2). Some people only require one or two magnets; others require a couple of more. Well in keeping with the “Chris is just not normal” theme, Rosie had to insert five magnets in the headpiece in order for the two magnets to snap together. Why? Apparently I am thick-headed, thick-skinned, or what have you. But having thick hair in that area was not a major factor… Another audiologist, Morgan Hahn, was there to assist. Morgan has done a great job over the years fitting me with the latest hearing aids and helping me keep my sanity. For those of you with hearing problems and are thinking of getting a hearing aid (or two) please talk with your audiologist (this is not an advertisement). Like Morgan and Rosie, I bet they will be able to do magic for you.

Microphone, processor and headpiece

Image 1. External microphone, processor and headpiece

Implant

Image 2. Advanced Bionics Implant placed under my skin: small magnet on right; receiver-stimulator on left next to wire that goes to cochlea

My Advanced Bionics cochlear implant device (note thick head)

My Advanced Bionics cochlear implant device (note thick head)

Once the magnets were in place Rosie told me that I was going to spend the next 20 minutes or so calibrating each of the 16 electrodes individually and that I should listen for a beep and let her know when it was very soft, soft, medium, loud or very loud for each electrode. I heard my first beep and it was crystal clear! It was absolutely wild and said as much. We went through all the electrodes with me relaying how loud the beeps were.

Roxanne told me a funny thing on the way home about this part of the testing. During the testing she was talking with Rosie and asked if each of the electrodes was a different pitch and Rosie replied that they were but that they didn’t expect me to be able to distinguish between the pitches. Just after Rosie said this I exclaimed “It’s so cool to hear the different pitches” not knowing that they were just then talking about that very thing!

Next Rosie asked that I compare two pitches and let her know if they were the same or if one pitch was louder than the other. This process was a little more complicated since different pitches sound different anyway and it was difficult to tell which was actually louder.

Finally Rosie said she was going to turn on all 16 electrodes at a low volume and talk to me. She turned the device on and began to talk to me and… I could hear her! Not a mechanical Darth Vader, Donald Duck or Mickey Mouse sound but a female voice, albeit a muffled female voice, like I had cotton in my ears. She continued to talk to me and I heard what she said! she also explained that my ability to lip read also helped me understand what she was saying; which was true. However Morgan, who was standing behind me, started talking and I could hear most of what she said! at this point I exclaimed, “this is really kick ass!” I know I still have a long way to go over the next three months with sound improvement but what I heard today far exceeded my expectations (Oh, wait, I didn’t have any exceptions…).

I also heard Roxanne speak from her chair and the amazing thing was that I could distinguish voices. Rosie had a higher pitched voice while Roxanne’s was a lower pitched one. Being able to distinguish voices and tell whether they are male or female is apparently pretty darn good for the first day.

Rosie then spent some time giving me instructions about the device, the remote control, batteries, battery charger and then programmed the device with 5 settings for use in different environments. I was particularly interested in the remote control. I asked if it was possible to mute individual people. Not possible apparently. I thought I was being funny but Roxanne was not smiling. Now she didn’t think I wanted to mute her did she!?

You need to understand that I am not hearing through my ears but through a computer device with electrodes going to my cochlea that then send signals directly to my brain. Is this not cool? Is this not science fiction made fact?

Great job Rosie!

Great job Rosie!

As I left the clinic I looked around, hearing dings of elevators, humming of traffic, papers ruffling, keys jingling. I felt a little like Rainman with all the stimulus…

Roxanne and I picked up Ethan and went out to dinner (Sushi – sorry girls, next time!). The most wonderful thing happened at the restaurant tonight. Ethan and I were talking about movies and he mentioned that he and a friend just saw “Ender’s Game.” We talked for a while and he proceeded to tell me about the movie and how it compared to the book, etc. He then paused, looked at me and said, “Dad, do you know this is the longest I’ve talked with you at one time in over a year without having to repeat myself?”

Tomorrow morning Roxanne and I go back to see Rosie for more fine tuning. I’m signing off now so I can talk with Roxanne and hear what she has to say!

American Sign Language (ASL) and the “Vagina Monologues” play

Tomorrow is “the Big Day:” I get my cochlear implant device turned on! My recovery continues to go very well even if I still have tinnitus and “hear” jazz music or geese quacking loudly from time to time. These phantom sounds, according to my Doctor, will likely go away once I start hearing sound via the device. I will rather miss the jazz…

After reading other blogs and articles about what to expect on “the Big Day” I know the experience will not be like getting a new pair of prescription glasses where all of the sudden I will see clearly. Rather, I have set my expectations by not setting expectations. I will go with the flow, knowing that when my audiologist turns it on I will likely be inundated by a lot of loud noise; high pitched computer chirping-like noises, from what I gather. Over time these noises will likely be less annoying and I should be able to discern more sounds, voices, and perhaps even music.

Right now it’s too early to tell what my level of word comprehension will be in my right ear (typically it varies between 60-90+%). Remember, I got the cochlear implant for my right ear. My left ear will remain deaf, which is no big deal since it’s been that way since I was very young. Why not two cochlear implants – one for each ear? My Doctor said in so many words that the amount of benefit from putting an implant on an ear that has been essentially dead for 47 years would likely be minimal.

If I haven’t stated as much already, you need to know that I consider myself very very fortunate. Why? Well, for many reasons but I will only focus on a few for this blog: First, because I have been blessed with the gift of language and a structure for communicating in the hearing world. In other words, I wasn’t born deaf so I have a solid base to work with once I get the device turned on; I will have a reference to what I remember the word or noise sounding like and will pair my memories with how I will “hear” with the implant. Words, sentences, stories, music, and noises… re-learned; knowing that results may vary. I will actively refrain from hearing any whining or complaining sounds, or phrases like “not possible” or “you can’t do that.”

Another reason I count my blessing is because my family, friends and colleagues have been very helpful and have put up with my “frustrations” and associated behavior when I have been at my wits-end or exhausted from long days of trying to “connect the dots.” Also, my workplace, the University of Missouri, has been really great about rapidly responding and providing accommodations.

A third reason is that my hearing declined over a period of time. Granted the past year-and-a-half was tough in terms of how quickly I lost my hearing but I did have time to adjust. How did I adjust? Aside from an uptake of wine consumption which I already discussed in a previous blog post, we took a sign language classes, I experimented with Sprint’s Captel captioning service for home use, and now use a fantastic Captioning Service called 2020 Captioning and StenoCART for work meetings and conference calls (thanks to accommodations provided by my University that I will highlight in another post). I also use chat tools and video conferencing software.

I am beginning to amass an arsenal of communication tools… In this post I will focus on my experiences to date with American Sign Language (ASL) and the wonderful people I have met in the process. Roxanne was actually the one that pushed taking ASL classes over a year ago. She got all the information, contacted the teacher, and signed us up, so I had no excuses for not going.

Let me explain. At the time, I felt rather dejected; not depressed mind you, because I’ve never felt clinically of psychiatrically depressed – speaking as an Agricultural Economist of course… My hearing was bad, the ringing-in-the-ears or tinnitus was raging and I was bordering on a “woe is me” mentality. The prospect of learning ASL was daunting and not high on my priority list. Why? Because I was already exhausted from trying to hear during the day and the last thing my frazzled mind needed was to learn a foreign language. Fortunately, I have Roxanne to kick me in the pants if need be.

Roxanne and I show up at our first 8-week Community ASL class. We make our way up to the front of the class and I introduce myself to Dr. Stephanie Logan. I explained my situation and that my hearing was very bad and getting worse. Stephanie listened, asked some questions and then asked me to sit by the head of the large conference room table next to her. I also sat next to Roxanne and gave one of my “fine, I’m here” tortured smiles.

The class started when Stephanie started speaking. What she said next would completely floor me. She welcomed everyone to the class and then proceeded to say that she was completely deaf and that she had lost her hearing when she was 23. Good God! Here I was talking with her just minutes before and I had no idea she couldn’t hear me. This funny, bright, engaging person couldn’t hear a dang word I was saying and was doing just swimmingly. After that first memorable class I thanked Roxanne for making us go (I continue to thank her for many many things…). Seeing Stephanie in action that first evening was powerful. My dejected, “woe is me” attitude evaporated and for the first time I really felt a sense of hope. Keep in mind that all this transpired before I made the decision to get a cochlear implant which now offers me even more hope; as does the growing arsenal of tools and technologies that will help me communicate.

One night after class Stephanie invited me and Roxanne to a fundraising event, in part for her non-profit organization called the LEAD (Leadership through Education and Advocacy for the Deaf) Institute. She said the event was actually a play that would include sign language interpreters and that it would be a great experience to watch stage interpreters using sign language.  Stephanie said we would be right by the stage and that she would also introduce us to the LEAD Board chair.  I thought this sounded like a great idea. Roxanne thought so too. I then asked, “what’s the play called?” Stephanie smiled and replied, “oh, it called the Vagina Monologues.”

Roxanne and I arrived at Jesse Hall auditorium on the MU campus, walked down to the front right-side seats by the stage, met and sat next to the LEAD board chair. Stephanie and her colleagues were in the row in front of us.  The performance began. I noticed that I was one of only a handful of guys in the audience filled with women – many women and very few men. It should have been my first clue that I would be out of my element. The sign language interpreter was positioned in front of us on stage and began to sign along with the actors as they performed.

I’m not going to go into detail but let’s just say that I was really on foreign ground here; but hey I’m used to being on foreign ground. First, I couldn’t really hear the actors; second, I didn’t know sign language; third, the subject matter, although I am familiar with it, I was not used to hearing about it in so many ways. The bits and pieces of partial words I did hear I was able to match with the accompanying signs. I was therefore introduced to (and forever etched in my mind) the signs for pe#!s, vag!#%, and variations on those words, for they were repeated quite a lot… and all forms of body language and facial expressions that went with these signs gave me an inkling as to their meaning and context. On a serious note, the play was quite powerful; at times funny but also very serious and disturbing given some of the subject matter about violence and abuse.

VagMons037_jpg_700x800_q85

Susan Rayl performs in the skit “My Angry Vagina” during the Vagina Monologues on Saturday in Jesse Auditorium. More than 100 women performed in order to raise awareness for domestic sexual violence.

After the intermission I continued to try and hear the actors and follow the interpreter. It was a frustrating experience because I couldn’t understand either. I then decided I would turn off my hearing aid since it wasn’t helping me. It was an amazing moment for me. Everything became silent so I gravitated my attention to the interpreter. It was like in those movies where two people see each other from across the room and everything else fades to black and to silence. Likewise, I focused my attention solely on the interpreter and was amazed with how graceful sign language truly was. Although I couldn’t grasp many of the signs I was better able to get the gist of their meaning. Sign Language is not only a foreign language but a beautiful foreign language.

And so began our ASL journey and the start of a great relationship with Stephanie. I now serve as a LEAD Board member. Roxanne and I also meet with Stephanie and friends, when possible, for sign language sessions at her office or around town. Although Roxanne literally had to drag me to the first sign language class, I’ve been all on board to learn this wonderful language. This desire to learn was of course further propelled the past several weeks while being completely deaf!

Although I am very fortunate to get a cochlear implant and remain in the “hearing world” I will learn and practice sign language as well. It’s an invaluable tool and will help me connect the dots in new ways. It will also help me and Roxanne communicate because I won’t have the implant on all the time (or the batteries could die…).

Remember those days when the kids were little and the parents would spell out sentences so the kids wouldn’t understand? Like, “Hey, what are we going to G.E.T. M.A.R.I.E. for C.H.R.I.S.T.M.A.S.?” Now Roxanne and I can continue this approach with sign language. I am sure the kids will pick up some sign language along the way so it may not be effective for too long. Don’t worry friends, family and colleagues, if you see me and Roxanne signing around you don’t think we are talking about you… or are we? 🙂

Stay tuned for tomorrow’s post about D-Day or Device Day.

Look Mom, no scar! Our first post-surgery appointment…

This morning Roxanne and I went to the Doctor’s office for the first post-surgery checkup.  My surgeon, Dr. Bien, and his team entered the examination room and we proceeded to chat for several minutes about the surgery and I explained to him how weird it was to be wheeled into the operating room, put under anesthesia, only to wake up in what felt like just under one minute.  By “chatting” I mean me talking, then reading his lips and occasionally him writing down words or phrases I didn’t get.

I thanked Dr. Bien for not shaving off a big swath of hair on my surgery-side of my head. He smiled and then said he was going to lean the chair back so he could examine my incision. I needed to take my glasses off which is no big thing, except I’m pretty much blind without my glasses on. Translation: I can’t read lips without my glasses on!

Dr. Bien titled my head to one side and adjusted that very bright light on my incision area. He also had a camera focused on the incision so I could watch it all on the TV monitor in front of me – only everything looked fuzzy . He proceeded to take off the rest of the stitching adhesive and wipe down the side of my ear. I asked for my glasses and awkwardly looked through them with one of the bows folded. I looked at the screen and then asked, “where’s the scar?” I turned to look at the Doctor and Roxanne and repeated, “where is the scar!?” Amazing! Roxanne said later as we were driving away from the office that Dr. Bien did a fantastic job with the suturing which was why there was minimal scaring; she should know – her father was, and sister and two brothers-in-law are all doctors.

Can you see the scar?

Can you see the scar?

We spent the next 30 minutes talking, writing and drawing about the surgery, the implant and what to expect. One thing I wanted to know was how secure the implant was under the skin. Could I accidentally jar the implant in a certain direction and pull out those electrodes? The answer was, “no.” Dr. Bien then drew me a great diagram showing how the receiver/stimulator was actually “anchored” in the bone, tucked under the skin next to a hole that was drilled through my skull so the wires could make their way to the cochlea.

Thank you Dr. Bien for a job well done!

Success – I can now take a shower. The next step is to get my device turned on next Tuesday, November 12th, with a follow-up fine tuning the next day.

Regarding yesterday’s post, my old friend, Randy posted a reply on Facebook where he stated, “Coincidentally this evening the PBS News Hour had a story on phantom sounds.” Here’s the link:

http://www.pbs.org/newshour/updates/science/july-dec13/tinnitus_11-06.html

If you read the link I encourage you to also scroll down and play the recordings in the “What Does Tinnitus Sound Like”? box. You will be amazed, shocked, and dismayed that there are folks that hear this kind of stuff all the time. I am one of those folks, only when I don’t hear jazz music… It’s enough to drive a person mad, but that’s another story.

On another note, people have been emailing and asking me about the puppy and how she’s adjusting to life with the Fulcher Family – da da da dum (snap snap). Well, Luna(tic) is doing great and came into our lives at the right time. By “right time” I mean that the puppy has been whining and barking from time-to-time. I know this because Roxanne would put her hands over her ears or use sign language to mimic a barking dog. Ahhh, silence can be golden…

Luna(tic) and me

Luna(tic) and me

Stay tuned for my next posts about American Sign Language and Captioning Services…

Update on recovery and “Musical Ear Syndrome”

It’s been 12 days since my surgery, which was on October 25th, 2013. So, how’s it going? First and foremost, we are all doing well. The kids and Roxanne are doing great and are very supportive while I’m recovering. Every day we take our two dogs, Sadie and Luna(tic) – I added the “tic” part, to the field near our house. These daily outings have been great!

Out and About - Girls with dogs (Ethan is off at theatre rehearsal)

Out and About – Marie, Abby and Emily with dogs (Ethan is off at theatre rehearsal)

Ethan enjoying cleaning dishes...

Ethan enjoying cleaning dishes… see that smile!

I spent the first week at the house recovering and this week working from home. Although I am feeling fine I felt I should avoid going into work and being around a lot of people. Why? The post-operative instructions stated I should avoid sneezing, coughing and blowing my nose for three weeks, so I figured avoiding people would be best in the short run. It was great having Roxanne at home the first part of last week! But it was inevitable that she would need to leave and go to work…

Keys in hand and excited about leaving and going to work... all alone now...

Keys in hand and excited about leaving and going to work. I can’t imagine why…

My incision is healing quite nicely. The only drawback is that I wasn’t able to wash may hair for about a week; and only then was I able to wash – with shampoo – everywhere except the side of my head where the incision is because it must be kept dry at all times. Now this may not seem like a big thing except that my skin is healing and is DRY, very DRY, and itchy. I’ll just leave it to your imagination about “flaking” which will be short lived.

Pain? Very little pain. Actually, no pain any more, but a dull throbbing or thickness that I am aware of most of the time.

Ringing? Yes! At times the ringing is worse than others. However, I am fortunate that I am used to it. There is one development since my surgery that I wasn’t sure how to share. The other night I was sitting alone in the den when, for the life of me, I started to “hear” geese! They were quietly quacking at first but then it got louder. I yelled out, “I hear geese quacking! Like a whole fricking gaggle of geese!” Roxanne walks in, looks at me calmly and says, “really?” then walks back out. I don’t think she took what I said seriously. Heck, with me hearing geese I didn’t take myself too seriously.

So I kept these new noises to myself. When I was in the car the other day, I “heard” the windshield wipers as they moved back and forth across the window – even down to the slight screeching sound they make when the rain is very light and rubber is “frictioning” across the glass. And when I turn on the faucet I “hear”water. And wait, here’s the most bizarre thing, I “hear” music. Yes, music. Typically jazz or big band music. For example, the other day I went to the mall with my daughter, Marie and waited outside the Barnes and Noble bookstore near the food court. In malls there is typically muzak strumming along in the background. Well, this environment apparently triggered me “hearing” jazz music – particularly one instrument, the saxophone. The mind is a very wild place and makes me wonder what else we take for granted as reality may actually be illusion.

In preparation for revealing this oddity in today’s post I thought I would Google “phantom sounds” and sure enough I have what is called “Musical Ear Syndrome!” I kid you not. A sampling of websites referencing phantom sounds and “Musical Ear Syndrome” are listed at the end of this post.

The good news: I am not crazy. Even better news: Those times I do “hear” music, I “hear” Jazz rather than Rap 🙂

On another note, I see my Doctor tomorrow morning for my first post-surgery checkup! Stay tuned for my next post.

A sampling of websites:

http://www.nytimes.com/2005/07/12/health/psychology/12musi.html?_r=0

http://www.audicus.com/blogs/hearing-aids-blog/6601209-the-ghost-in-our-ears-hearing-loss-and-musical-hallucinations

http://www.hearinglosshelp.com/articles/mes.htm

http://nursing.advanceweb.com/Article/Musical-Ear-Syndrome.aspx

Cat with a cochlear implant? Yes it is true!

A note from Chris Fulcher about the reblog above: No, my implant will not be in the center of my forehead… But I have been led to believe that mice will fear me more, now that I can hear them… Kate’s blog is fantastic; told with that wonderful Australian sense of humor. Her blog posts inspired me to begin my blog. Please take time to read about her entire journey via this reblog I am posting in leu of my blog for tonight. OR go to:
http://katelocke.wordpress.com/

Kate's Cochlear Implant

Now, most people who know me, know I love cats. I was intrigued when I came across this photo on the web, which I didn’t really believe was true. Until my audiologist told me that apparently it IS true! This is how scientist have been studying the effects of cochlear implants on deafness!

After 3 months of using the cochlear implant, the synapses of auditory nerve fibers in these implanted cats were compared to those of normal hearing cats and congenitally deaf cats of the same age.   They discovered that cochlear implants “rescued” the synapses of the deaf cats.

Check out the website for more details on this:  Endbulbs, Activity, and Cochlear Implants

I am sure many people would call this cruel; but hey, I’ve got an implant, and I love it! So, I find it fascinating – but geez, that poor cat doesn’t look too happy in the photo…

View original post 134 more words

Part IV Fade to silence: A brief history of my hearing loss progression… and why delays are OK

Since my previous post started and ended with, “…she would rather shoot me…” I figure I should start there.

Roxanne was talking with me earlier today (combination, lip reading, sign language and patience) about how difficult it was to get my attention from across the room. She used to be able to call out my name and I would look up and we would go from there. Now that I don’t hear anything at all, no amount of noise will get my attention. Also, if my head is buried in a book or computer no amount of hand waving or gesticulating will get my attention.

To get my attention now, she walks across the room and taps me on the shoulder or waves right in front of my face to let me know that she is there and would like to talk. For some reason, almost every time she does this, I would jump out of my skin or yelp in surprise, so profound was my silence and therefore my concentration. I hope this startling jumping out of my skin reaction will be short lived…

Today Roxanne proposed a solution! She started the conversation by mimicking holding and shooting a gun at me. “Ok Chris, think context, think context.” I could tell from her body language that she wasn’t upset or angry which was reassuring. She then began to finger-spell, N-E-R-F. Ah! I was beginning to get it. A conversation was then patched together that essentially meant that she wanted to use a Nerf gun to get my attention rather than always needing to get up and go over to me and tap me on the shoulder or wave her hands in front of my eyes. I’m not sure how shooting a Nerf gun at me would reduce my “startlement” factor but I was on board with what she proposed.

In terms of a Nerf gun here’s what I was envisioning:

NERF-Jolt-Mini-Blaster-in-hand

Simple Nerf gun

I said, “great, let’s go buy one!”

“Buy one? Why buy one when Ethan already has a couple of Nerf guns?”

[Remember, what put in quotes is not actually what I “heard”; rather, it is my best guess based on lip reading, sign language, body language, and context]

That’s when I started to feel uncomfortable… because here’s the types of guns Ethan has:

nerf_gun

NOT a simple Nerf gun… multiple rounds can be fired in sequence

pistola-nerf-400x300

More than an attention getter…

“Maybe using a gun isn’t such a good idea… How about me just being more aware of your lovely presence?” All the while thinking that perhaps: (1) she only wants to save money; (2) she thinks she might miss me with just a simple gun and doesn’t want to go through the hassle of reloading all the time; or (3) I am really beginning to irritate her… She shrugged at my suggestion of just being more aware; I changed the subject with the knowledge that I am safe… for now.

So back to my chronology about my hearing loss progression. Where was I? Oh yeah, hearing in my good ear was yo-yoing up and down; some weeks good, other weeks bad. Ringing became more persistent rather than just coming and going. A sign that my good ear might be burning out. It’s not just the ringing in my ear that made it more difficult to hear conversations; it was also the actual decibel loss, meaning that I was actually losing my hearing, not just putting up with ringing that made conversations more difficult to understand. Like I said, it’s complex.

I started to panic when my hearing dropped dramatically this May (2013). After my audiology appointment I sent an email to my doctor (June 5, 2013) and told him I was now ready to pursue getting a cochlear implant, which meant going through a cochlear implant evaluation. This email was a huge step for me. My doctor never pushed me to getting a cochlear implant before I was ready; he only said that a cochlear implant would keep me in the hearing world and that he would perform the surgery once the evaluation came back that I was a candidate and that insurance approved the surgery (a no brainer, or so we thought at the time).

Remember, not until this time did I really want to get a cochlear implant because up until then I could get by with my hearing, bad as it was. It got to the point where I could no longer hear on the phone; nor could I effectively participate in group meetings. I was exhausted all the time and it was extremely frustrating. The decision to send that email and say I was ready for an implant was very important in terms of preparing me psychologically for the surgery and life afterward with an implant. In reality, I had nothing to lose. My ear was burning out and I could no longer get by. So what if all residual hearing would be lost as a result of the surgery? I was losing it anyway. With respect to the “unlikely” things that could happen, well… they were unlikely to happen. I was on the right path; I figured the doctor knew all these things would be going through my head, so all he needed to do was wait until I was ready.

I’m not going to go into detail on all the tests, ups-and-downs except to highlight that I went through the evaluation and formally became a cochlear implant candidate. The audiologist and I filled out our respective forms and the doctor submitted them to the insurance company for approval. Then… everything came to a screeching halt.

Roxanne and I received a letter from our insurance company early August that the surgery was excluded from my University of Missouri medical plan. We were floored. We were absolutely shocked. My doctor was also completely amazed and shocked that the surgery was excluded (by the way, being excluded is a lot worse than being denied). Paying for this surgery out-of-pocket was not an option; it was far too expensive.

While I was reeling from this news and then walking around like a just-turned zombie Roxanne rallied and said, “we will fight this!” She proceeded to act on her lawyer instincts by first writing everything down, doing research on others in similar situations with their insurance companies, writing letters, and giving me a list of to-dos.

Roxanne and the children knew I was in a daze; heck, who wouldn’t be? I was thinking about all the implications of going deaf; what about my job? My family? How will I work and support the family? College tuition times four? weddings times three? (I know, I get a little overdramatic but hey, it’s my crisis!) And I don’t even know sign language! And the thoughts went south from there… Through all this Roxanne kept assuring me that everything would be OK and that I would get the cochlear implant one way or another. My doctor and friends were also very positive and supportive; saying that this was only a temporary road block and that it will all work out.

I turned to my University for help to see if we could get this matter resolved before I got into letter-writing campaigns, badgering the insurance company, etc. I’ve been at the University for many years – since 1987 – and must say it has always been a pleasure working there. Seriously, I’ve been very fortunate to be surrounded by great people; whether they be at our center, in our division, college or campus/system administration.

On my way home one day I said to myself, “why not just drop in on the Vice President for Human Resources at the MU System level and tell her my situation?” After all, I couldn’t get on the phone and call and make an appointment. I remember it was late on a Friday afternoon. I walked into the foyer and saw her name plate on one of the internal office doors. The light was on so I poked my head around the door and saw her sitting at her desk.

“Excuse me do you have a minute?” She smiled and said, “sure.” We introduced ourselves; her name was Betsy. The next 10 minutes made my day, my weekend, heck, it made my year. Why? Because she listened to what I had to say; suggested I write down everything in an email and send it to her; assured me that they would address this matter; and also assured me that she was in no position to give me any promises or guarantees and that they would need to do a thorough review before letting me know the outcome.

Although she could give me no hint as to the outcome, her openness, action-oriented attitude, and assurance that they would address the matter took a load off my mind and greatly reduced my stress level. I no longer thought I would need to write a bunch of letters and get into a protracted battle with faceless adversaries. I had a feeling that the University would have my back. And they did.

I’ll just cut to the chase. I emailed my letter on September 9th. by October 1st Betsy replied that the committee met, recommended and agreed that they handle my implant as an exception to the medical plan, meaning that I was a “go”! You all must understand that this whole process was lightning-fast for a large organization like our University. I had my surgery on October 25th!

For those of you that are thinking of getting a cochlear implant or have loved ones going through the process, do not be discouraged! If road blocks are put up don’t freak out; forge ahead and be persistent. It will work out. Plus, there’s the Affordable Care Act (ACA) or Obamacare. Whether one likes it or not, it’s a reality and it may well make this whole hassle with insurance companies a moot point. Just don’t get on the Obamacare website before the end of November. 🙂

Stay tuned…

Part III Fade to silence: A brief history of my hearing loss progression… and why delays are OK

“No she would rather shoot me… with a nerf gun that is, to get my attention!” I will relay this story in my next post later this evening! Why?

Because here’s what actually happened with this post: I pressed “Publish” before I was even halfway through my first sentence! An email went out to those folks following my blog with just the phrase, “No she would rather shoot me…”

Although the phrase will undoubtedly get peoples’ attention and prompt them to read this post, they will be disappointed on one level (no violence) and humored on another (Chris screwed up).

The story about “shooting me” which is part of my longer blog that I will now post later tonight, will be about how difficult it is for Roxanne to get my attention because I can’t hear. She suggested getting a nerf gun to get my attention.

Consider “Part III Fade to silence: A brief history of my hearing loss progression… and why delays are OK” an aborted blog and stay tuned for Part IV!

Laugh-out-loud!