Thursday, May 31, 2012

Conversations (Living With Cogan's Syndrome)

A truly strenuous component of this whole ordeal is trying to have a normal conversation—albeit, normal is something I'll never have again. One on one talks are typically the most successful for me as I am able to focus on the other individual's lips and listen intently to the sound of their voice. For instance, when Sarah is driving and I am in the passenger seat of our car, our exchange usually goes something like this:

“Do you want to get a coffee at Dunkin' Donuts?” she asks.

“I'm sorry, what?” I ask, shaking my head, leaning in close to her face, and squinting as I try to target her lips with my eyes.

“Do you want to get a coffee at Dunkin' Donuts?” she repeats, this time speaking in a slow, low tone while turning her face toward me so that her lips are in view.

“Do I want to get a coffee at Dunkin' Donuts?”

“Yes,” she says.”


And that is what I would call an easy discourse. Discussions grow increasingly arduous when in larger rooms or when others are involved.

I have come to loathe groups of a considerable size. In church, I can't hear what anyone is saying. The sound of multiple conversations within the sanctuary flush out the already feeble noise of a single dialogue I might be having. When going out to dinner, I have Sarah order my meal and talk to the server because I am embarrassed about my hearing problems and don't want to spend the time explaining my issues to someone I don't know.

Spending time with Sarah's family used to be something I truly looked forward to. Delving into a feast—as most get-togethers include around ten people—drinking beer with guys, sitting outside by the fire and sharing stories and laughter were all aspects of the family congregation that I longed for; unfortunately, much of this has changed. The conversations ensue and the joyfulness of being together envelopes whichever home we are gathered in, but I feel left out. I don't laugh anymore and I'm not as outgoing as I used to be, even amongst those whom I am closest to. Most of the time I'll try to stay involved, fake a smile and then leave the room to go read, drowning my disappointment in fantastical worlds.

Reading has become a habit of mine. I loved to read before all this began, but now that I have the time—and it excuses me from having to talk too much or strain myself in the laborious act of trying to hear—it is practically all I do. I read when I wake up and only take breaks to eat, go to the bathroom, talk to Sarah, and sleep. It is probably becoming an addiction, but at this point, I don't care. I wish I could talk to others without feeling self-conscious or shamed, but I can't; it's too hard. I don't want to think about my issues anymore so I've allowed fictional lives to take over my own.  


  1. Max, every time I read your blog I'm near tears. I've been through so many of the same tests you have been through, and can some what relate to the other issues you are facing. Obviously my hearing loss is not as bad as yours, and I am very blessed to have a very good set of hearing aids and an audiologist who knows how to set them just right. However, it's nothing compared to having perfect hearing. Music isn't the same, conversations get awkward when you have to ask the other person to repeat themselves more then twice, you can't hear anything in a crowd, people ask you what those things are on your ears...yup. Never the same and never will be. So every time I read a post I'm like "yup. Know what you mean." Again, I know my situation isn't half as bad as yours, and I've had almost my entire life to get use to it, but even now it's still such a struggle for me emotionally and spiritually.
    You and Sarah are very much in my prayers and I know you guys will get through the worst of this together. "Trust in the Lord with all your heart and lean not on your own understandings. In all your ways acknowledge Him and He will direct your path."

  2. Hey Hannah!

    Thanks for the comment and for the encouraging words. It is good to hear from someone who can understand what it is I'm going through. It is difficult some days, but I am getting somewhat used to it. Thank you for your prayers.