Wednesday, September 5, 2012

Progress (Living With Cogan's Syndrome)

July 13th – 20th:

I love book sales. There is nothing like rummaging through tables upon tables of used books and finding just the right ones. Then, when you get to the cash collector, they count your findings and you hear those few precious words: “That will be three dollars.” That's right. You've just paid three bucks for twelve books and you feel like you own the world. You're unstoppable. You've practically pulled off a heist. You bring them home in bags, place them on your shelf, and let them sit—waiting years to be read—because obviously, there are other books on your reading list that take priority.

Last weekend, Sarah and I had the privilege of attending the annual Elting Memorial Library Fair in New Paltz, only this year, her parents came along for the ride—well, technically we rode in their Chevrolet Trailblazer, but who's arguing semantics? This event is thrown every year in order to raise money for the library. It is not only a book sale (that is my favorite part), but there are other tables including jewelry, toys, home goods, gardening, and food. The fair includes a raffle with local artists, restaurants, and businesses contributing prizes. Live music is played all day long—a tradition started by my father when I was just a kid and now includes many local musicians. My mother, being the children's librarian, is always involved with the fair, particularly at the jewelry table.

A couple of years ago at the end of the fair, the person running the home goods section allowed anyone to fill a paper bag for a dollar. Sarah heard this and an epic conquest ensued. Fists viciously wailed, black eyes and broken bones accrued, bodies were thrown through the air like paper airplanes and Sarah walked away victorious! Okay, maybe it didn't really happen like that, but she did manage to stuff the bag with a beautiful glass punchbowl filled with a set of ten carved glasses and a ladle. This year, we all came away with some neat stuff as well.

Spending the day with both sets of parents was a treat, even though it was only for a short time. With all that has occurred in our life this past year, it is relieving and gratifying to be around people we love. Even though we're married, having our parents’ support and knowing that they are there to take care of us when we need it is comforting.


A couple of weeks ago, the day we went to see my parents and Gideon and his daughter, we had a meeting with Janet to turn up my cochlear implant to the next “map.” She did some of the same tests that she did the last week; only this time, she wanted to check my hearing for speech recognition. Janet covered her mouth with a round disc that had been hanging on the wall and verbalized different days of the week, months, and noises which I had to repeat back to her. I was able to understand and repeat all but a couple of the noises. Janet told me that I was progressing very quickly because the passageways in my ears had only been closed for a short period of time. Because I have had normal hearing for my first 26 years up until recently, it is easier for my brain to make out and recognize sounds than a person with long-term hearing loss. She explained to us that she has one other patient with Cogan's Syndrome and he, too, is doing exceedingly well. This was a huge encouragement.

“Thank you for letting us know about that,” I said.

“Yeah,” Sarah said, “it's just more confirmation that we made the right decision in going through with the surgery.”

“Yeah, it’s amazing,” I said with a smile.


Today we had another appointment with the audiologist. When we arrived, Sarah remained in the waiting room and Janet brought me in the back of the office to do some hearing tests. One test was similar to the one that I had done regularly months ago when I first lost hearing: Janet was in another room behind a window working through a computer. When I would hear a beep or a noise, I was to press a button.

Janet returned from the sound proof room that I was seated in after the first test and spoke: “Okay, now I'm going to put these headphones on you. You'll hear sentences read by automated voices. Some of them are fairly silly, but I want you to repeat them to me. If you can't hear or understand everything, just repeat what you heard.”

I still had pretty decent hearing in my right ear at that point, so Janet wanted to test both at the same time.

I listened and heard the first sentence.

“It looks like you live in a gingerbread house,” I said out loud, trying not to smile or laugh after hearing that through the headset.

“She only loves me for my money,” I said, thinking to myself that these were too odd and finally let out a chuckle.

This went on for a few minutes with most of the sentences sounding absolutely ridiculous. When I was all finished, Janet returned and we went to get Sarah. The three of us sat down in her office.

“Well,” Janet said, “I am amazed again at how well you are progressing. You were able to understand almost all of the sentences.”

“Thanks. They were really weird,” I said, laughing out loud.

Janet repeated a couple of the strange ones to Sarah.

“Now I am going to set up your device. And I want to put a special map on one of the settings. This map called Noise and it is for just that—a noisy setting. Basically, you would use it, say, if you were out at a restaurant and you wanted to focus on the conversation at your table. You could use the remote or the button on the device to switch to this map. What it does, essentially, is it lowers the background sounds that are finding their way to your implant and allows you to hear the conversation you are having in a much clearer way.”

“Wow, that sounds great,” I said.

Janet configured my device through the same process that she usually does: she hooked it up to the computer and had me tell her how many beeps I heard.

We left the building, my device a little bit louder than before, encouraged by the fact that I was still moving forward. I was improving quickly and became hopeful that it could only get better from there.

1 comment:

  1. Cool! You can use this map when I see you and Sarah on Saturday evening!
    I love reading your blog Max. You're awesome. A phenomenal writer and your heart is beautiful. I love the sentences they gave you ... sounds like someone's married to a sugar digging diabetic...? (bad joke)... :-)