I'm gonna be real with you, God's challenging me with this whole "intentional vulnerability" thing right now. I know it was the phrase He gave me for the next two years, but geez louise, I didn't think it'd be this hard! As I sat down to write this month's blog I had an entire plan laid out for an update from Costa Rica and language school- but nope! Until this blog post, I can't think of a time when I've spoken publicly about what it's like to go through life with a hearing disability. (Actually, I take that back. I can think of one time, and only one time, during a House Committee Hearing where they were taking public testimony for a program to help children with auditory impairments. When the "is this even a real disability" argument was brought up, my boss kindly turned to me and said "Maybe you should be the one to handle this discussion since you're the one actually living with it." But outside of that moment, never.)
It's not that I'm ashamed of my hearing loss or even embarrassed (fifth grade me with hearings aids, braces, and glasses might've disagreed, but I've outgrown that). I'm frank and open about it with friends, classmates, and those who need to know... which is most people since I've chosen a profession based on communication...but publicly? There's never seemed to be a reason to talk about it. It was personal. I guess when God prompts you to do something though, it's better to just say yes, so here goes:
Six weeks and one day before I left for Costa Rica I went to my audiologist and told her I was having trouble hearing...again. She asked me what was different and I causally mentioned that over the past several months I had been noticing that it was becoming incredibly hard to hear words when someone wasn't sitting directly in front or beside me. We did a hearing test (my first one in 6 years, which she politely reminded me was far too long to go without when you have a chart as thick as mine) and found exactly what I didn't want: my hearing had plummeted.
In short, normal hearing range is 0-20 decibels (dB)... After 9 surgeries in total, my right ear stabilized. Today, it's in the 35-50 dB range, lower than where it needs to be, but the loss is considered mild to moderate; for the most part I can manage with the help of a hearing device. My left ear- well the results haven't been so grand. We (my doctors, my family, even myself) thought it had stabilized also, at least it had for the last 6 years... but this year, without much warning, it changed. The hearing test showed that no sound wave was registering until the 65-80 dB marks. That's the level of sound given off by a traffic filled street or a vacuum that is running in the same room as you. That's how loud something needs to be for me to even hear it. It's a severe loss. A hearing aid helps, but it won't fix it.
We readjusted my hearing aids (which my stubborn self hadn't worn for more than a few months at a time since high school might I add), talked about some options since I was moving overseas, and I left with "you might consider a 'BAHA' " hanging over me.
BAHA: Bone. Anchored. Hearing. Aid.
It's basically the cochlear implant of conductive hearing loss.
I saw two more doctors in the following week to see if we could figure what was going on.
My ENT, a family friend who knows me by name and my chart by memory, hugged me and asked how I was. We caught up on family and school and jobs as he scoped my ear, only to tell me that there didn't seem to be a solid answer. "All things considered, your ear looks good compared to where it was when we started. If your hearing has gone back down, then it shouldn't be able to get too much worse," wasn't exactly the answer I was looking for. The only suggestions were to wear my hearing aids and deal with it -or- to consider having two more surgeries.
I got home and I cried. I was tired. I was confused. I was frustrated. I was angry. In an instant, an entire chapter of my life reopened without warning. I sopped up the tears and reminded myself that I'd been dealing with this since I was three. I told myself (and my parents) that it would all be okay. I told God that since He'd always handled it before, He could go ahead and do it again. I gave it to Him and said I'd make the best of it- whatever that looked like. After all, hearing impairment seems the tiniest concern when so many in the world are dealing with problems a boatload bigger than mine.
Now fast forward a couple months and picture this:
I've been at CINCEL for just over two months- studying, learning, trying to keep up. I'm sitting in a phonetics class, surrounded by peers, as we study diptongos (or diphthongs in English, i.e. where two vowels are pronounced together to make one sound in a word). I'm several minutes into a back-and-forth with our substitute teacher as she gently corrects me on how to pronounce one single word. A word that I actually know the meaning of for that matter! And then, there they are again. Those stupid pesky tears making my eyes water.
She didn't say anything at first. This tiny little abuelita-esque lady, who's been teaching twice as long as I've been alive (and I'd only met me the day before), wasn't sure what to do or why exactly I was crying? She tried apologizing...saying that I was actually doing okay overall... that she was just trying to help me. In return, I was trying to explain in my very broken Spanish that I wasn't upset with her at all. Teaching me was her job. I wanted to learn to the concept. I wanted her to correct me.
But in that moment...
With that set of words...
Despite the hearing aids...
Even after several minutes...
I physically couldn't hear the difference between the phonetic variations she was working with me on. They both sounded muffled. Thus, they both sounded the exact same.
I was tired. I was confused. I was frustrated. And again, I was angry. It's hard enough to explain the life long struggle of what I'm able to hear (or not) to people in my native language. There is literally no way I was going to be able to do it in broken Spanish. I felt defeated. It wasn't the first (or last) time I've needed extra help to understand the phonetic. It wasn't the first time I'd been frustrated with my inability to hear... but defeat? That was a new sensation for me. All I needed was to be able to explain to this incredibly kind and helpful lady that I was literally incapable of differentiating the phonetic variations... and I couldn't.
In the 21 years I've been on this hearing (loss) journey, I have never thought of my hearing loss a handicap- it's just a struggle that I keep fighting through. I learned tricks to make life easier.
I learned that it's best to sit toward the front right of any classroom.
I learned to not be embarrassed when I have to ask someone to repeat themselves.
I learned to look people in the face and read their lips while they talk.
I learned to sign "I'm not deaf, but I'm hard of hearing and I know a little sign" just in case I ever needed it.
I learned to always carry extra 312A batteries in my purse.
I learned to be open about my hearing so that people could help me along the way.
I learned to laugh at mistakes or miscommunications.
I learned to just make it work.
But now, none of those tricks matter.
I can't read lips when I don't know the words. I struggle to differentiate between words when I can't hear the sound of natural accents that separate them. In a language largely based on intonation, it is a deficit and I'm having to process this part of my life all over again.
I went back to my room that afternoon and I'd be lying if I said the tears didn't surface again. I tried to pray about it that night... and I cried again. All the crying only added to the frustration with myself. I chided myself for being dramatic, telling myself that I was struggling to hear- something I consider completely routine in my life- not dying! So really, I should just stop already. But the anger still lingered...it still lingers sometimes if I'm honest.
It's hard to get a firm grasp on a situation when we don't understand the "why." We're people who like control. We reassure ourselves by being able to map out reasoning and resolution. We talk about faith and healing and miracles. And I believe in those things! I've heard the stories. I've seen testimonies! But what do you do when (seemingly) there is no reasoning? When there is no plan for resolution? When after 21 years there has been no miracle?
You cry.
You get angry.
You argue with God.
And then you praise.
I was going to quote the Apostle Paul here, something nice and succinct like
Philippians 4. or maybe 2 Thessalonians about the persecution and thanksgiving... or even 2 Timonthy about being strong would have worked. Really, there's a lot of great options, but my heart returns to Job every time.
"With Him are wisdom and might; to Him belong counsel and understanding. Behold, He tears down and it cannot be rebuilt..." (Check out all of Job 12 here!)
Job goes on and on. Without some in depth studying, it's kind of a depressing book really. At face value it's like a bad country song: He loses everything. His wife leaves and all his kids die. He gets leprosy. His friends are miserable and blame him for all his hardship, saying that he brought it upon Himself. But time and time again, Job states his integrity, praises the knowledge and power of God, and ascertains that wisdom, guidance, counsel, and light belong to HIM alone.
Job cried.
Job got angry.
Job argued with God.
And then, Job always praised.
I find myself always wanting to live up to the standards of impressive people. Job was an impressive person. During this season, I want to be like Job. I want to be so firmly rooted in my faith that I can yell at the top of my lungs about how I don't understand. I want to be able to cry without shame. I want to believe in both vindication and in the miraculous. And I want to know that at the end of my anger, at the end of my confusion, at the end of another day, or year, or lifetime with no miracle, that I will always come back to the comfort which is found in knowing the One to whom belongs all counsel.
And that my friends, well that is what I'm learning at CINCEL.
Until Next Time,
Rachel