Thursday, September 13, 2012

Diminuendo (Living With Cogan's Syndrome)

I've been plagued with silence for months. Unable to hear the beautiful melodies that this world has to offer, I fell into a depression that resulted in pushing away the reality of my disability. I didn't want to think about my hardship so I drowned it out with books, news, distractions. As time went on and I allowed myself to understand that many of the things I had the ability to do before were no longer options, it became increasingly difficult to maintain my passive state. I wanted to change; I wanted to feel like myself again.

One aspect that I’ve spoken about previously has been the sudden lack of music in my life. For the first time, I couldn't absorb the rhythmic sounds of musicians and bands that I enjoyed or of course, hear my wife sing. Sarah and I bonded on our love for music in general and for undiscovered or unique artists when we first met. In the past few months, a sense of urgency has entered my mind, whispering to me that I need to hear it again. I need to drive down the road, listening to a passionate song while pumping my fist in the air like a fool.


One month ago, my cochlear implant—or Coco, as we aptly call it—was activated. I was able to hear something again in my left ear. Sure, the sound waves mostly imitated robotic versions of Alvin, Simon, and Theodore, but Coco was doing a fantastic job. In addition, some of the hearing in my right ear has come back as well, giving me a new combination of noise that is not ideal, but is immensely helpful in contrast with silence. During the early stages of my illness, it was rare for me to experience a day when my right ear could recognize voices and sounds at even a mediocre level. I would go three or four weeks only able to hear faint noise. Now, it is quite the opposite—thank God—and I will only have a few days at a time in which my ear canals are closed and then gracefully open to an audible level for weeks at a time.

At first, I was apprehensive about listening to music again. I had been given a pamphlet from Cochlear Americas before my surgery, and on one of the pages it provided information all about music. One of the tips suggested I begin listening to soft, acoustic music that I would recognize. I knew that even though I'd be able to hear it somewhat, the sounds would not be how I once knew them. I steered clear it for the first two weeks or so; sure, some music would come on in the car and it was unavoidable, but I wasn't seeking it out. A couple of weeks ago, however, Sarah and I were driving in the car and she convinced me to put on a CD.

“Why don't you find something that might have a softer sound?” Sarah said.

“Okay,” I sighed, “I guess.”

I searched through the CD case but couldn't find anything that I thought wouldn't be offensive to my ears.

“I just can't find anything, Sarah.”

“What about Jack Johnson?”

“Oh yeah, that might work,” I said. This short exchange speaks volumes about our relationship: Sarah is an optimistic “idea person” who is quite persistent, even when I give up.

                                                          (My beautiful wife and me)

I slid the album into the car player and I concentrated. After a minute, Sarah spoke.

“What does it sound like?”

“It's okay,” I said. “I don't mind the sound but it is different from what I remember. He sounds sort of robotic and has a nasally voice. I can't really make out the words exactly, but I recognize the music.”

“Well, that's a start,” she said.

“Yeah.” I remembered that the pamphlet advised it would be a good idea to write down what I was hearing throughout the process, but I was in the car and didn’t have paper or a writing utensil. I’ll have to remember to do that later, I thought.

As the days progressed, I continued to practice listening to music in hopes that one day, it would sound good to me again; however, what I've come to find is that this process is going to take more time than I had anticipated. I am blessed to have been diagnosed only six weeks after the onset of the severe symptoms. If it hadn't been that early on, who knows what my life would look like now? While I am grateful, I had no idea it would be such a long, drawn out process in recovery, including the unforeseen hardships of learning to listen to music again.

There are many variables that affect how I am hearing music. If it is in the car or another small, enclosed area, it will be easier for me to understand the various sounds. If I am in an open room, such as church or concert arena, with hundreds of people surrounding me, all singing at once to the songs being played, I can't enjoy it. A full band just sounds dissonant and obnoxious. The instruments which normally breeze harmoniously through my ears are now an avenue for the high pitched noises to overpower the lower tones in a discomforting, harsh way. This being the case, I have tried to listen primarily to the acoustic genre, but regardless of low or high vocal tones, I can't make out the vocals too well.

Something else that I have been aware of is the fact that many bands that I enjoy are coming out with new albums and I can't appreciate them in the same way that other people can. I may not ever hear it the way it’s “supposed to” sound. This, I think, may be part of the reason why I was hesitant in the first place to even try to learn to listen again. I knew I could be disappointed. This is so hard for me. I can tell Sarah how I am feeling, but what do I say when people ask how I’m doing? I really don’t want to be a constant source of negativity to others and I also don’t want to seem ungrateful for the blessings bestowed upon me by God and others in the midst of this hardship. I know there have been multiple times in which someone could say I was very fortunate—I refer to those instances as grace and blessings—and if I can help someone along the way, that’s a seed of hope planted in my heart. With that said, things are not just suddenly better with my unilateral cochlear implant, and rebuilding my “new normal” is not unproblematic.

While it hurts to think that I will never listen to music the same way again, I am fortunate enough to have a father who shares in my struggles in some ways. My dad is a musician. He plays guitar and ukulele. He writes songs. He loves music. In his thirties, my father began to gradually lose his hearing. He hasn't gone completely deaf, but he does wear hearing aids in both ears. He still listens to and plays music. He's encouraged me with the notion that eventually, with practice, what I do hear will become my own sound and I will appreciate it in my own way.

It's easy to narrow my focus on specifics of my life-change, but I have been reminding myself to view all that has happened through a wider lens. I'm grateful for the quick access I had to the cochlear implant. I am forever thankful to God for leading me in the right direction and making it possible for me to hear again. Every day, I get more used to Coco. Every day I am able to understand a little bit more. And now, when I am sitting in the passenger seat of Sarah's car—my device facing her—I can make out her lovely voice, singing passionately to whatever might be playing or whatever is in her head. I can hear her voice; faint, yet clear and I can cherish the moment.



  2. Max, that was beautifully expressed! Thank you for sharing your heart with us!
    Michelle and Dave