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…

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

  1. Jeff

    Great story Chris, especially considering how large of a system (bureaucracy) the MU system can be. Go Betsy!

    Hope you are doing better with the pain and ringing. This blog has been fun to read, inspiring and educational (you should have started it years ago!).

    In the meantime, tell Roxanne to just “put the guns down and step away!” Have you thought about getting a few beach balls? Softer at least…and maybe you’ll at least see it coming! (A lot less startling)

    Will miss you in Baltimore!

    Reply

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