Wednesday, September 19, 2012

Life Changes (Living With Cogan's Syndrome)

August 7th:

“Grandpa fell,” I heard my dad say on the voicemail message. Due to distant, quiet speech and his low, male voice, the only other words I made out were, “It's pretty bad.”

I ended the call and sat for a moment trying to grasp what I had just listened to. Grandpa fell? What else did my dad say? Just moments earlier, I had been sitting in a chair in my in-law's living room, working on a blog post while Sarah was at work. I noticed my dad was calling but I knew I wouldn't be able to hear him over the phone, so I opted to wait until he left a message. When I finally picked up the phone to listen, what I heard was distressing.

I lifted the laptop off of my lap and placed it on the end table. I stood up swiftly and bit my nails. Still holding my phone, I searched for Sarah's work number, made the call, and paced through the living room.

“Hello?” she said.

“Hi baby,” I said, my voice breaking and tears already loose from eyes. “How are you?”

“I'm fine, just busy.”

“Sarah, my dad called. He said that...that Grandpa fell and that it's bad. He said some other things but I couldn't make it all out.”

“Really? Oh my gosh. Okay sweetie, I have a voicemail from your dad also. I'll listen to it and call you back,” she said with concern in her voice.


I waited for a few minutes, standing alone in the room, awaiting the call from Sarah; waiting for her to tell me I heard it wrong and that everything would be fine.

The phone rang.


“Hi, Max,” Sarah said. “I listened to the message. Your dad said that Grandpa fell two nights ago and had been on the floor for a day and half. He managed to crawl to the refrigerator and pull drinks off of the bottom shelf, but couldn't move much more. Your dad found him this afternoon. He said that it doesn't look good, but that they are at the hospital waiting to find out more.”

I didn't say anything for a moment.

“Sweetie?” Sarah said. “Are you okay?”

“Yeah. I guess,” I said, wiping away my tears and regaining my composure.

“Honey, I wish I could be with you. I'm sorry. I'll be leaving work soon.”


“I love you, Max.”

“I love you, too.”

I closed my phone and sat back down. I didn't want to talk to Sarah's parents about what had happened. I wasn't ready to speak with anyone. I picked up the computer and scoured the internet for another hour, doing my best not to think about what was going on but having a very hard time blocking it from my mind.

Sarah got to her parent's house a short time later and we ate dinner with them. As we sat around the table, we told them what had happened and prayers filled the room.

When Sarah and I got home later that night, we started going through the mail, all the while, wondering what was going on with my grandfather.

Sarah handed me an envelope sent from my alma mater, which was also the place I worked. I opened it up, wondering what it could be. A little over a month ago, I got a call from my boss that I would need to have my doctor fill out a form stating when I would be able to return to work. Personally, I was unsure of how long I would need to remain at home. I was still plagued with vertigo, unable to drive long distances. On top of that, the more activity I'm involved in, the dizzier I get, leaving me utterly exhausted—needless to say, working with 12 nursery school aged children would be quite the adventure.

Doctor Russo, who would be the one to sign the document, was also unable to give a definitive date. The rarity of my disease and the fact that there are varying degrees of severity for each patient simply leaves no room for concrete answers. Thus, together we had decided to say that I would hopefully be able to return to work in October.

As I pulled the letter from the envelope, my heart sank at what I read. Someone from the Human Resources department was regretfully informing me that I was being let go. The letter stated that due to the fact that my contract would be running out at the end of September, and that I was unable to return until October, the school needed to hire someone else. It also mentioned that I had never returned a signed copy of my contract two months ago, anyway. The letter concluded by thanking me for the work I had done at the daycare, and wishing me luck in my future endeavors.

I looked to Sarah and re-read it to her.

“Wow. How do you feel?”

“Well...” I said, unable to look her in the eyes. For the second time that day, for seemingly unrelated reasons, I broke down.

Sarah brought me into the living room and held on to me until I was ready to speak. Even though we had prepared ourselves for this, it was still a shock. Before coming to a decision with Doctor Russo about when I'd be able to go back to work, Sarah and I both agreed that worse case scenario, I'd lose my job and be in the same position as I was now—but that we'd make it work like we have been. Only, now that that had become a reality, it was harder to take in than I had imagined. For both Sarah and me, the simple fact that I did not have a job secured to which I could return was the hardest part. Reality was availing itself to us individually. What if I can never go back to work? I want to provide for my family and I can’t, I thought. Sarah let the idea simmer that her income was officially the sole financial support for us. I was hurt because even though I hadn't seen the kids or my co-workers in months, I missed them and now I would never be able to see them on a regular basis again. People don’t usually plan for these sorts of situations. We often have an expectation that life will go exactly how we have always visualized it—and here Sarah and I were, comprehending how much had changed in mere months, days, hours.

Something else was nagging me too: I knew that I had signed a copy of my contract and emailed it to Human Resources back in June. I opened the computer and signed in to my work account. I searched through the emails and was shocked at the irony of what I discovered: I never sent the contract to Human Resources; I had accidentally emailed it to myself. I started to wonder—although I didn’t fully understand it—if maybe this was supposed to happen.

We sat motionless on the couch for a few minutes.

“Max,” Sarah said, breaking the silence, “while this is hard for both of us to fully grasp right now, we knew that this could happen. Maybe God led us to this point for a reason. You can't go back to your job, but since your illness began, you've discovered your love for writing again. If you hadn't been out of work for so long, you may never have done a thing with it. I'm not sure if there will ever be another time in your life in which you can fully pursue your dream. What better time than now?”

I stared into her eyes, listening to the encouragement coming from wife's heart—and on a day like today, it was exactly what I needed.

Sarah, I believe struck by a realization, continued.

“I have a new job and I am content. This is the first time since I started to work full-time that I am actually beginning to believe that my time will come. I want to be able to sing, and create art, and follow my dreams. But with everything that has happened so far this year, I'm looking at the bigger picture. I still have time. I don't mind working full-time while you are going through this if it also means that you can do what you love.”

“I just...I just don't want you to resent me,” I said.

“Max,” she replied, pulling me close. “I will never resent you. I want you to know that, since you have gotten sick, I have not once been upset that you are not working. It’s not your fault. My daily thoughts about you go like this: I’m glad Max is hearing better today. Or, I’m upset that Max isn’t doing well today. I care about who you are, not what you do. I love you.”

“Thank you,” I cried again, but this time I was not upset. “I love you, too.”

A little while later, after Sarah and I had both calmed down from the letter and from our conversation, we found out from my parents that my grandfather had broken his hip and shoulder and had kidney failure. They weren't exactly sure what was going on with him, but they were still waiting. Both of my parents were scared and the uneasiness and anxiety that I had felt for most of the day lingered.

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.

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.