Tuesday, August 28, 2012

Activation (Living With Cogan's Syndrome)


June 29th:

It felt like the longest twenty minute drive ever as Sarah and I made our way to the hospital today to meet with Janet, who would activate my implant. We tried to occupy our time by talking briefly about what would soon transpire.

“How are you feeling?” Sarah asked, turning her head slightly in my direction so that I could read her lips.

“Anxious,” I said. “Excited. I can't wait.”

“I know, I feel the same way.”

My nerves got the best of me. I pulled out my cell phone every few minutes, looking at the time—assuring myself that we would not miss the appointment. I thought about various things: I thought about my mother-in-law, Michelle, and how today is her birthday—she said that my “activation is the best birthday gift.” That's sweet; I wondered if I would finally be able to hear the sermon in church on Sunday, having missed out on them for the last four months; I thought about my friends and family and how amazing it would be to show off my cool new ear gear; I thought about how after today, having regular conversations with Sarah would be a little bit easier. I chewed on my nails—which has always been a bad habit—but today, especially, I couldn't keep my fingers away from my mouth.

“Are you biting your nails?” Sarah asked, her eyes focused on the road.

“No,” I lied in a guilty voice.

I turned my head to the right, looked out the passenger side window, and cautiously brought my hand up to my mouth.

“Stop it!” Sarah scolded as she tapped my hand away from my face.

“I'm sorry,” I said, my hands frozen in the air. “I can't help it.”

I sat on my hands as we approached the hospital.

We pulled into the garage, Sarah grabbed a ticket, and we found a parking spot a couple of floors up.  The elevator brought us to the first floor, we walked through the hallway of a connecting building and stepped outside. Across the street was the entrance to the building we needed to be in, so we trotted over, hand in hand. We maneuvered through a congested area built up with cars and pedestrians, and went inside.

Sarah remembered better than I did where exactly Janet's office was. It was quite the ordeal trying to find it last time, but she knew the general direction and thankfully, there was now a sign hanging from the ceiling guiding our way.

We entered Janet's department and she greeted us.

“How are you doing?” she asked.

“I'm doing well,” I said. “I'm very excited.”

We followed her into her separate office room and took our seats across from her chair on the opposite side of the desk.

“How are you feeling since surgery?”

“Much better,” I said. “I'm well rested and not in much pain anymore. My balance was thrown off again due to the surgery, so I'm not able exert myself much yet. I do, however, have decent hearing in my right ear and have for about a week now. That has been helpful.”

“That's great,” she said smiling and clasping her hands together on the top of her desk. “Well, why don't we get started?”

Janet stood up, walked over to the corner of the room, lifted up a large briefcase and placed it on her desk.

“This is everything that you will be taking home with you,” Janet said as she began to unzip it.

She proceeded to pull out every box within the carrier and describe their particular functions: extra batteries, disposable batteries, a charger for the batteries, a charger for the remote, a device that extracts moisture from the cochlear implant, an extra hearing apparatus, and so on.

Janet then pulled out the actual device that I would be wearing. She connected to the battery to show us how to put it together, and she unhooked it.

“We're going to program your device now. I'm going to hook it up to this,” she said as she lifted up a small metal object that looked like the battery I would be using; although this was connected to a wire and plugged into her computer. “Here, why don't you try putting it on?”

Janet handed me the device and I carefully placed it on my ear. It looked like a large hearing aid and it was connected to a wire with a circular piece at the end called the “coil.” The coil was supposed to connect magnetically to the implant under my skin. My hair had grown long and thick and curly at this point and the device did not want to stick. Finally, Sarah offered her assistance and we were able to attach it successfully together.

“You won't be able to hear anything yet, but when I turn it on, we will do a sound test. If you hear two beeps, say 'two.' If you hear three beeps, say 'three.' If your hear four, say 'four.'”

I repeated this back to her just to make sure I had heard her correctly. Then, she turned it on. My heart was almost protruding out of my chest. I knew that this was the first real step in activating the device; I knew that I was mere minutes away from being able to hear something again through my left ear; moments away from a new beginning.

For the next five minutes, I told her how many beeps I heard. Some were louder and sounded different than others: muffled; quiet; clear; loud.

“Okay, all finished,” she said. “You can take it off now.”

I handed the device back to her and she took it apart. She placed the regular battery on again and told me how to turn it on.

“Here,” she handed it to me. “Hold the button closest to the wire down until a green blinking light comes on. The green light will change to a flashing orange light and that's how you know it is on and waiting for a signal.”

I did as I was told and then struggled to put it on my head. Once it was finally secure, everything changed.

“Whoa,” I said with a smile.

“What do you hear?” Janet asked.

“I hear a lot of static,” I said. “And your voice sounds like a robotic chipmunk.”

“Yes, that's very normal. Over time the static should disappear and voices will sound less robotic and high pitched. Sarah, why don't you talk a little with Max so that he can try to recognize your voice?”

“Okay. So, Max,” she said, smiling into my eyes. “You finally have your device hooked up. How does it feel?”

“It feels great. Kind of surreal.”

“I wonder what kind of things you'll be able to hear as you progress. Is it nice being able to hear my voice again?”

“It really is,” I said with a huge smile.

Janet pulled out a remote and explained to us that until our next visit (which would be a week later), if I feel as though sounds are getting too quiet, I could use the remote to change the device to a new “map.” She explained that there are four different “maps” on the remote and that I am already on “map” one. Each map is not only a new level of volume, but it also includes a variety of settings such as sensitivity and quality of sound. Eventually, once the implant is turned all the way up, each map will be programmed to a new feature such as for listening to music or blocking background noise in a crowded area like a restaurant.

“Wow, that's great,” I said.

We thanked Janet for helping us in this endeavor and we left.

Before departing the building, Sarah videotaped me talking about the activation. I had a hard time getting through it as emotions overtook me. We stood in the hallway between the main building and the exit as I tried to pull myself together. I wiped the tears away and hugged Sarah. We held each other, tightening our embrace, as my tears fell onto her shoulder.

“I'm so happy,” I said.

“I know, sweetie. Me too. I love you.”

“I love you too.”

Sarah and I went back to her parent's house, where she finished work. While there, I started to notice all sorts of things that I could hear through my left ear: the pages of a magazine turning, tapping of fingers on a table, water streaming from a faucet, going to the bathroom (sorry). I was thrilled. I'm normally  quite reserved when it comes to excitement in general. I don't usually jump for joy or vocalize my enthusiasm; however, this time it was too hard to hold back. I've been deaf for months now, and today, I could hear again. It wasn't perfect and I know it won't ever be, but I'm hearing! I'm hearing! I love it. I can't help but share it with the world.

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