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:
“I feel thin, sort of stretched, like butter scraped over too much bread.”
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… 🙂
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…