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. ūüôā

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!

Part II Fade to silence: A brief history of my hearing loss progression… and why I don’t drink red wine any more

In my previous post I provided a short chronology of my hearing loss progression. Today and for the next couple of posts, I thought I’d spend more time delving into what transpired the past year-and-a-half. There’s no getting around sugar-coating this period in my life. In short, it was a time filled with stress, anger, and despair as the ringing in my ear fluctuated (louder some weeks and not so loud others) and my overall hearing got worse…and worse. It affected my family life – how I interacted with my wife and children – and my work.

Throughout this period my doctor did a great job monitoring the situation and was upfront that I would likely be a good candidate for a cochlear implant (CI) down the road. He said he would do everything he could to keep me in, “the hearing world.” Back about a year ago, when my hearing was still fairly good, he said I was between a rock and a hard place because I only had one good ear left and if I got a cochlear implant I would likely lose all natural or residual hearing in that “good” ear as a result of the operation. I would, in essence, be deaf. Also, there were no guarantees on how well I would adjust to a cochlear implant because every person is different. some people can get back up to hearing almost perfectly while others may only have a 60% word comprehension level. Results vary as does the time it takes to adjust or “re-learn.” You can probably guess that, at the time, I didn’t find the cochlear implant route particularly appealing.

Hearing Tests and Audiograms:¬†Here’s where I digress briefly to talk about hearing tests and audiograms. Hearing tests involved putting me in sound-proof rooms and listening for beeps – high frequency beeps to low frequency beeps (or vice versa). When I heard a beep I would raise my hand or press a button. Not only do hearing tests involve listening to beeps, they might also involve repeating words or sentences. From these words and sentences audiologists could provide a “word comprehension” score. Around a year ago my word comprehension was around 85-90% in my good ear with my hearing aid in. About a month before getting my implant it was down to 8%.

Since age five I’ve been in more audiology testing booths – in more countries – than I care to remember. Why? Because I’m an army brat that lived in a lot of places growing up. Everywhere we lived my mom and dad would take me an ENT (Ear, Nose and Throat) doctor in hopes of finding something that would help my hearing. Mom and Dad, I love you – thanks for doing everything you can to help me out! In later posts I’ll share some very interesting – and funny – stories about the lengths my parents went to for my hearing; whether it was getting acupuncture treatments in El Salvador, recovering from a surgery in a British army hospital burn ward, or flying to Panama in a cargo plane to visit an ENT specialist. Stay tuned…

Three years ago I didn’t really need a hearing aid. Please understand that my benchmark for “good hearing” was being able to hear out of one ear. Since I’ve adapted over the years to having one “bad” ear it hasn’t even been an issue for me.

Listening is Exhausting: One thing that everyone should understand is that¬†listening is exhausting¬†for people that are hard of hearing – just know this. To emphasize this point, please go ahead and click on the link in the previous sentence and read. I expend considerable amounts of energy just concentrating on what people are saying, reading lips, and filling in the gaps mentally with “likely” words from all those missing words in sentences I couldn’t hear (the mind is amazing at putting puzzle pieces together). And doing all this in real time. For many years I didn’t tell people I was hard of hearing and got away with it. However, not¬†telling people you are hard of hearing is a mistake. If you are meeting people for the first time you should just let them know upfront; it will save you from those awkward moments that will likely arise. Plus, there is nothing to be¬†embarrassed¬†about!

At the end of the day I am typically exhausted; particularly when I travel and attend conferences, which may require listening to presentations and socializing afterward. As my hearing got worse over the past year it became even more difficult to put all the pieces together. If people think I am intense there is a good reason why! I often begin meetings by letting people know that I am hard of hearing and to not be alarmed if I stare at them intently with a furrowed brow; that I am actually quite harmless and that all I will be doing is trying to hear what they are saying. People appreciate candor, particularly if it is couched in humor…

The other night while watching the first Lord of the Rings movie, Bilbo Baggins said:

‚ÄúI feel thin, sort of stretched, like butter scraped over too much bread.‚ÄĚ

I really like that quote because it’s how I usually feel after a long day of trying to listen to people!

Red Red Wine: So how did I cope over the years, coming home exhausted? Well drinking wine certainly helped – or so I thought. Over the past couple of years, as my hearing declined along with my positive attitude, I found myself drinking more wine than necessary. By “necessary,” I was latching on to the oft-cited studies about the health benefits of red wine… At any rate, I felt a glass or two of red wine every night was just fine. Until it wasn’t.

About a year ago my doctor referred me to another doctor to rule out other possibilities as to why my hearing might be declining. They were eliminating possibilities and one of those possibilities was that it might be auto-immune-related. The doctor prescribed methatrexate and told me in no uncertain terms that I was not allowed to drink ANY alcohol.

“you mean, like, ever?” I gasped.

He replied that as long as I was on the medication I should not have any alcohol because it would cause liver damage. Well, I got my prescription filled, went home, started my medication and stopped drinking wine.

A couple of months ago I talked to the doctor who prescribed the medicine and told him that although the medicine didn’t help in slowing down my hearing decline (therefore, not auto-immune-related) it was the best medicine I’ve ever taken. Now that I’ve stopped drinking wine I’ve realized how much of a crutch it was in terms of dealing with stress, exhaustion and just wanting to escape. I haven’t taken methtrexate for a couple of months but that doesn’t mean I want or need that glass of wine.¬†Don’t get me wrong, I am not against drinking wine. It does have its well documented health benefits, and people enjoy it immensely! It’s just that I wasn’t drinking wine because I enjoyed it; I was drinking wine because I felt I needed it to handle my hearing situation.¬†Truth be known, alcohol only made it more difficult for me to hear and concentrate! Not what I needed after all… ūüôā

I really had not intended to write about drinking wine in my blog. Heck, now I can see how people pore out personal stuff that others might cringe at, saying to themselves, “I’ll never write stuff like that for the world to see!” If there is one thing to get across with what I wrote, it’s to be mindful about what you do and why you are doing it. I was very fortunate to be nudged down a path with taking methatrexate, a path I didn’t foresee, and I’m better for it.

What I’ve Learned: As you’ll read in future posts, my hearing loss has created wonderful opportunities throughout my life and led me down paths I would never have taken had I not had any hearing loss. It’s not about what’s “good” or “bad;” it’s about what “is” and going with it. This will make more sense later… Here’s what I want to know: If there are so many “silver linings” in the midst of adversity, when are they no longer “linings?” Which begs the question, “when are we truly facing adversity versus just living life?”

In my next post I’ll get to recent events that led up to the surgery. Yes, Roxanne and I are now going to continue watching the first Lord of the Rings movie for the fourth day in a row…

Fade to silence: A brief history of my hearing loss progression

As I mentioned in my previous post, hearing is a very complex process. Let me back up to the beginning… I was born in 1961… OK, OK, I won’t go that far back. I’ll only provide relevant information as it relates to me going deaf.

Mid 1960s: When I was five years old I completely lost hearing in my left ear due to German Measles (or mumps) – essentially nerve damage. Over the years I adapted and life went on just swimmingly (I’ll share the many ways I’ve adapted in later posts).

1994: I had my first tinnitus episode – loud ringing in my right ear that made it very difficult to hear. Extremely frustrating and scary since this whole tinnitus thing was new to me.¬†I was diagnosed with¬†Meniere’s disease¬†(Endolymphatic Hydrops). The doctors ran a lot of tests over a couple of days including what I call the, “Sputnik Monkey tests.” Essentially the “Sputnik Monkey tests” involved me standing up straight, strapping me into a harness, blindfolding me, and then altering the angle of the floor beneath my feet. Amazingly when the floor angle was slightly altered I immediately fell on my face… almost. The harness did what it was supposed to do – ¬†it¬†broke my fall, leaving me dangling above the ground like an inebriated puppet.

So what did this mean? It likely meant that¬†when I had German measles the nerve damage also compromised my¬†vestibular system¬†or inner ear balancing mechanism. Basically I’ve relied my whole life (since age 5) on my eyes for balancing (proprioception). The doctors proceeded to test me¬†several more times just to make sure. Each time with the blindfold on I fell immediately – it was actually very funny. The times they did not blindfold me I was able to stay upright. The doctors then asked me a bunch of questions like, “do you play sports? What type of sports? Do you have trouble walking on the beach at night? etc. Yes, I replied that I’ve played sports all my life, tennis, racquetball, soccer, long distance running.

The doctors then explained that I’ve adapted very well under the circumstances and to keep doing whatever it was that I’ve been doing.¬†So basically I can spin around and around and not get dizzy – perhaps a useful skill for a NASA astronaut? There is still time… The major take-away from all this is that I do not exhibit all the symptoms of Meniere’s disease, namely vertigo. Having tinnitus or ringing in the ears is bad enough; I couldn’t imagine also having vertigo – I understand that it can be quite debilitating.

Fortunately, this episode in 1994 was short lived; the ringing stopped and hearing in my right ear bumped back up to near normal. The major drawback was taking prednisone Рa drug whose side effects were so bad that I seriously considered not taking it again even it meant going deaf;  which was easy for me to say back when I had most of my hearing intact in my good ear.

2007: My second tinnitus episode flares up and lasted longer than the first one. I did my round of prednisone, reduced salt intake (low sodium diet), stopped drinking coffee (minimized caffeine intake which included chocolate and other life-enriching things). My hearing declined slightly after this episode.

2010: ¬†Roxanne knew that my hearing was gradually getting worse so she convinced me to get a hearing aid – and it really helped! Please, my dear reader, if you know someone who has a hearing problem please talk to them about getting a hearing aid – it will make a huge difference. If YOU have a hearing problem just get a damned hearing aid and don’t worry about how you might look! Heads-up, there are over¬†48 million people in the US with hearing loss¬†and this number is only growing. By the way, October is National Protect Your Hearing Month! More on hearing aids in later posts…

2012: Third major tinnitus episode. The loud ringing in my ear remained rather constant despite prednisone treatments. My good ear was beginning to burn out. Regarding ringing in the ear, it was loud, roaring, pulsing, ticking, high pitched, low pitched; a constant distraction that did not go away. Quite maddening.

Summer 2013: My word comprehension in my good ear was down to 8%. I basically relied on reading lips now. I became a cochlear implant candidate.

In tomorrow’s post I will wrap up my chronology by filling you in on what transpired the past year – becoming a cochlear implant candidate, taking various medications, navigating the world of insurance, and learning more about the world I will be entering…

I need to sign off and start watching that Lord of the Rings movie. I believe we left off half-way through the first movie; at this rate we’ll finish the trilogy by Christmas! Roxanne has been patiently waiting…

Etiquette for Interacting with People Who Have Disabilities

An excellent post about how to interact with those who are deaf / hard of hearing

Can You Hear Me Now?

Image

I got into work today, and my office mate was talking with one of my co-workers about a course he is working on about etiquette to follow when interacting with people who have disabilities.  I mentioned my blog, and he told me he would get me in touch with the woman who is creating the course.  I will have to post about that later.

It got me thinking though.  I think a lot of us, myself included, are nervous and unsure of how to interact with people who have disabilities. Do we look at the interpreter or the person who is using the interpreter? Can we touch the wheelchair? How should be act around a guide dog?  Things like that.  If you slip up, knowingly or not, it can be awkward, offensive, and embarrassing.

This website is a great resource for what you should and should not do when interacting…

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A funny thing happened in New York City…

Thanks to all of you who replied with comments and sent emails regarding the blog! I’ve already received emails letting me know that the website link is being shared with others that are hard of hearing or are considering a cochlear implant. There is so much more to share about people being Hard of Hearing (HoH), deaf, Deaf or in denial, so your feedback helps provide that extra encouragement needed to continue my blog journey, share my experiences, and in the process provide additional information that may help others.

Back in 1994 when I first started losing my hearing in my “good” ear I visited the Central Institute for the Deaf¬†in St. Louis¬†to learn more about options (hearing aids, sign language, lip reading, etc.). At the time I thought the deaf community was one big happy family that worked together to help people with hearing disabilities. Boy, was I WRONG! The deaf community is divisive to the point of animosity toward “other” camps; to those that don’t see things a certain way (sign language vs. oral communication, defecting to the “hearing world” vs. staying in the deaf culture, intermarrying, etc.). If you are interested in reading more: Deaf Culture and¬†Ethnicity, Ethics and the Deaf World¬†for starters, to give you an idea how complex this community is. Perhaps I’ll delve into this some more in future posts. Like so many things in life, when looking from the outside-in, we see cohesion and similarity on the surface when in fact, the things that look the same are very very different when looking from the inside-out.

So, how am I feeling? I am still sore but bruising around the right side of my face is starting to fade. I still get fatigued easily and take those opportunities to nap. Good news: I finally got a full night’s sleep last night (Sunday)!

How am I adapting? since my hearing loss in my right ear has been gradual, I am not freaking out the way I probably would if I lost all my hearing at once. I’ve had time to adapt. How have I adapted? Sometimes the hard way… For example, earlier this year I was staying at a hotel in New York City where I was presenting at a conference. I set my alarm for 6:00 AM and also had the front desk call my room at that time. Well, my hearing had gotten so bad that I did not hear the alarm go off nor did I hear the phone ring. I just happened to get up around the right time and decided to go jump in the shower. After getting out of the shower I was shaving with a towel wrapped around my waist, when all of the sudden, out of the corner of my eye, I saw the hotel room door open! In stepped a heavy-set security lady. I yelped! She yelped! My towel stayed on.

After recovering somewhat from my rather high-pitched screech, I causally asked if I could help her. She replied that she was sent up to my room to see if everything was alright because, “after multiple phone calls to your room with no answer, it is our policy to check and make sure everything was OK” (code phrase for making sure there was no dead body in the room…). I explained that I was hard of hearing and didn’t hear the alarm or phone go off. A bright idea struck me just then and I said, “hey, would it be OK if you came up to my room tomorrow morning and woke me up?” I had forgotten that I was standing there with nothing but a towel around my waist and razor in my hand. Apparently she hadn’t. She smiled, looked me up and down and said something to the effect that, “it just wouldn’t be appropriate” and that they have devices for persons with disabilities they could install so she wouldn’t be needed.

Well that little incident prompted me to explore options such as vibrating watches, strobe lights, etc. I scoured the web and came across a great device – a Pebble watch. This watch not only has a vibrating alarm, it has blue tooth capability with my phone – to vibrate any time there is an incoming text, calendar appointment, phone call (which I can’t hear) or email. I turned off the vibrating option for incoming email since I would be shaking all day long…

PebbleWatch-ubj-580

Pebble Watch

This device is not gimmicky nor is it a novel geek gadget; it is essential and I wear it all the time now. Just a heads-up to all of you that the “wearable technology” market will be going gang busters in the near future. stay tuned for many other “Smart Watches” coming to stores near you and most likely just before Christmas… Google Glass soon to follow…

I am going to attempt to do something different this evening. I am going to try to “re-blog” interesting posts that I think might be interesting and/or helpful. I am also going to “publicize” on Facebook and Google+ so bear with me If you get multiple emails this evening. I’ll figure out how to not inundate your inbox for those of you that are “following” me.