Wednesday, July 18, 2012

Hears to Hoping (Living With Cogan's Syndrome)


April 30th - May 15th:

I have to backtrack a bit. On Monday, April 30th, I drove for the first time. That was a day I’ll always remember, as it was truly a point in which I felt as though I was finally moving forward. Driving, however, was not the only important event that happened that day.

Two weeks prior, we had met with Dr. Mazen for a hearing test—at which point he said that I would have one more test on April 30th.  This would finally allow us to make a decision about whether or not it would be the right time to undergo cochlear implant surgery. Sarah and I were excited about the prospect, but there was some anxiety as well. One of the reasons being was that for about four days leading up to the final hearing test, I had decent hearing in my right ear. This may sound like a good thing—making progress and whatnot—but Dr. Mazen had explained that our insurance company was unlikely to pay for the implant for my left ear if I had good hearing in the opposite ear. I’m not sure why this was the case; it seems ridiculous to me considering I am almost completely deaf in my left ear and a hearing aid won’t help. He also explained that if I am not eligible, he was still willing to fight for me because he was of the opinion that I am an ideal candidate. There was the possibility that we would need to send appeal letters, and we even had the idea that if we went to the local news stations, that we could get some publicity and thus cause the insurance carrier to want to cover the operation.

“Sarah,” I said. “What are we gonna do? My hearing test is coming up in two days. I won’t be able to get the implant if I have good hearing in my right ear like I do now.”

“We just have to pray about it, Max. We can’t worry about what might or might not happen. If the test results are good, then for whatever reason, maybe the surgery isn’t the right idea,” Sarah said.

“I guess you’re right.”

Sarah and I prayed that night. We prayed that we would be content with whatever the outcome might be. In my heart—even though I would love to have more “good” days in my right ear—I hoped that the hearing test results would be poor. This could be my chance, I thought. I’ve spent months without hearing and if the implant is an option, I want to take it. Oh, God, to hear again. That’s all I want. Please.

The next morning, I woke up and my hearing was bad again. It was a strange thing to be thankful for—given the state I’ve been in since February. This continued through the day of the hearing test. We didn’t meet with Dr. Mazen that day—only the technician—but he told Sarah that he would call her to talk about the results within a couple of days.

On Wednesday, May 2nd, Sarah received a call from Janet—an audiologist at the hospital. Dr. Mazen had spoken with Janet about my test results and she wanted to set up an evaluation for cochlear implant surgery. Sarah was shocked since everything seemed to be happening quickly, and she was expecting to hear back from Dr. Mazen before any sort of steps began in the cochlear implant process. She told me that she confided in her friends at work and asked for advice. Her perspective throughout this process has been a little bit different than mine: I have one thing on my mind, and that is to hear again. Sarah feels the same way, but she has adopted a protective nature and is wary about rushing into things without researching and really thinking them through.

After leaving a message with Dr. Mazen’s office, Sarah heard back from him later that day. The specialist told her that the results were bad, and that is why he contacted Janet about the evaluation. He spent time answering questions, which is something we both appreciate about him. Our minds were put at ease with the idea that this appointment would be to determine if I was a candidate, and then the decision about whether or not to go through with the surgery would be later. Questions swirled in her head and she asked what she could think of: How invasive is the surgery? Do they drill into his skull? Does it involve the brain directly? Will Max be able to get updates as technology improves? Dr. Mazen responded to what he could and assured that Janet would answer the rest of our conjectures during the meeting.

One week ago, on May 9th, Sarah and I were rushing around a building at the hospital that we hadn’t been to yet. We had five minutes before my appointment with Janet and could not find her office. We believed we were on the right floor but there was no sign telling us where to go. On top of that, there was also no one working at the front desk to point us in the right direction.

As we helplessly searched for the correct entrance, Sarah received an important phone call and attempted to remain involved as we searched for our destination.

Sarah spoke with the woman on the other line, while I did my best to maneuver around, holding on to walls as to not lose my balance, and asking various people where to go. Finally, Sarah got off the phone and we ran into someone who was able to show us the way. We met Janet right outside of her office.

“Hi,” she said as she outstretched her arm towards me. “I’m Janet.”

“Max. Nice to meet you,” I smiled.

“Nice to meet you too,” she looked and saw Sarah, who was still mildly flustered. “Hi.”

Sarah shook her hand, “Hi. I’m Sarah. Sorry we’re late. We couldn’t find your office.”

“Really? You couldn’t find the sign?” Janet replied.

“No. There was no sign,” Sarah said.

“That’s odd.”

Janet walked around the corner and stopped, looking at where the sign should have been.

“Huh. I didn’t realize it was gone.”

Janet led us into her office and directed us to two seats on the opposite side of her desk.

“So, Max, I have the results of your hearing test,” she said.

“I’m sorry. Can you repeat that?” My hearing was bad again that day. I leaned in close in hopes of hearing a little of what she was saying and did my best to focus on the movement of her lips.

“Sure,” she smiled. “I have the results of your hearing test.”

“You have my results?”

“Yes.”

The three of us talked for a few moments about the test marks and then Janet looked directly at me. I noticed that she was good at focusing on me and making sure I understood her. She asked me, “Can you explain a little bit to me about your condition?” As I began to tell the story—I was becoming a professional at this point when it came to delineating what happened—I glanced at the wall at a small, wooden picture frame with a quote hanging behind the glass:

“Blindness separates people from things; 
Deafness separates people from people.”
-Helen Keller

The words absorbed into my mind and clung to my heart. I was in a safe place—a place where someone understood and many others like me had preceded me, seeking the same resolution.
After I finished telling her what happened in the last several months, Janet nodded and then explained something to us that caught us both off guard. I needed to relay the message back to her, sentence by sentence in order to fully understand, but this was one instance that I was glad I didn’t wait for Sarah to explain to me later.

“Typically,” she said, “I have my patients do a hearing test with a hearing aid on. In your case, this has happened suddenly, you do not have a hearing aid, and it would be of no use to you anyway.  I can tell, just by our conversation here, that you are a perfect candidate for the cochlear implant. The test would only be frustrating for you, so I am going to go ahead and fill out the paper work—stating you failed the test—while recommending that you receive surgery. This will be covered by your insurance.”

We had come to the appointment expecting that I would need to go through various tests—as this has become routine—and that there would still be a chance that she wouldn’t consider me a candidate; however, I passed the evaluation by just having a conversation with Janet—albeit, a very difficult exchange.

Janet went on to show us the two types of devices that I could choose from. She gave us packets and videos from both companies to take home and explore, giving us the freedom to make our own, educated decision.
We asked her various questions about the device and about how soon the wait would be between scheduling the appointment and the day of surgery. We also probed into just how invasive this all would be, and we found out it was much more minimal than previously expected. We questioned about our insurance and if she thought everything would be covered. Janet was positive that both the surgery and the device would be covered, to which Dr. Mazen later agreed over the phone with Sarah by stating, “Yes. Insurance will cover it. The hearing in Max’s left ear is never going to recover on its own. At this point, it’s a no brainer.”

Sarah and I left with a feeling of peace which we had not felt prior to the meeting with Janet. We spent the next few days looking into the two apparatuses. We both had a feeling early on which one we liked, and the more we researched, the clearer it became: I would be using the Nucleus device by Cochlear Americas. This company was the first to pioneer the cochlear implant about thirty years ago and it has been utilized at our local hospital for all five years that they have been performing this type of surgery. We had watched a video with Sarah’s parents that featured three different people who have the implant and each story filled me with tears, desperation, laughter, and hope. There was one thing that the video offered both me and Sarah: assurance. After watching, we knew we were making the right decision.

Today, May 15th, Sarah and I sat down with Amanda, the woman who would schedule my appointment for surgery with Dr. Mazen. It looks like I don’t have to wait too much longer: surgery is on June 25th!

As we sat in the surgical coordinator’s office, I remembered the framed quote from Helen Keller I had seen days earlier. “Blindness separates people from things; deafness separates people from people.” Wow. All this time I have wanted to express my feelings in the simplest of terms and I haven’t found the words. That is exactly how I feel. I have been separated, cut-off, detached from people for far too long. It has been a painful and tiresome journey, but it seems—after our meeting with Janet—that I am on a path towards freedom; I am one step closer to life’s beautiful melodies.

1 comment:

  1. Hey thanks for the blogging. I have cogan's syndrome I was fresh out of college when it first started its been 8 years now. It took away my life or at least the life I had worked toward. if you ever need to talk to people there is a great page on facebook we have 145 members. They are a great a bunch of people! They are great support because they are going through it or been through it. just an FYI.... Wishing you all the best

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