Friday, November 16, 2012

You Don't Own Me, Cogan's Syndrome


October 12th – November 4th:

Unable to remain as active as I once was before the onset of Cogan’s Syndrome, Sarah and I decided to make a list of things that I could still do a few months ago.  This was in an effort to remain positive and not dwell on the negatives. Many of the activities on the initial “can do” list still ring true today, but I’ve continued to add to them, without actually taking the pen to paper. These additions may seem small or commonplace to the average person, but to me, normal goings on have become big wins.

Reading and collecting comics has been a passion of mine since I was a young child, having gone to the local comic book store every Sunday with my father to spend my week's allowance on cheap back-issues. Five years ago, my friend Matt and I decided that we would take our love for everything related with comic-books and science fiction to the New York Comic Convention in Manhattan. Next to San Diego Comic Con (which just so happens to be the largest convention of its type in the world), NYCC is almost a celestial experience for nerds like me. The event is an amalgamation of activities that include celebrity signings and panels, meetings with writers and artists, screenings of movies and television shows, video and table-top gaming, and Cosplay—people dressing up as their favorite characters and feeling famous for the day as random fans ask to take pictures with them.

Matt and I have made it a tradition and have gone every year since, bringing various friends along with us each time. The past three years, Sarah has come with us as well. This year, despite my disease (or possibly in spite of), Sarah and I purchased our tickets in May in hopes that I would be well enough to go by October. Well,  we went, and though it was a tiring weekend—being crammed into a convention center with barely any room to maneuver as tens of thousands of people inched their way to their favorite convention destinations—I had an amazing time. I did not let my illness control me.



I walked around, cane in hand, for seven hours with my wife and our friends, purchasing comics and viewing all of the sites. We sat, packed in with 6,000 people, at a theater all day on Saturday and watched celebrities promote their movies and shows. This was a practical and enjoyable way for me to relax after the long, strenuous day prior. Later, our group went out into the city and spent time with friends from Connecticut and New York.



It was a fantastic weekend that I look forward to each year and I felt blessed to be able to continue the tradition without Cogan's Syndrome holding me back.
*****

Two weeks later, I ventured into the depths of the woodland of Vermont with a group of guys, in retreat from the busyness of everyday life. This is an annual event dubbed “Man Weekend” that began when I first moved to Connecticut over three years ago. Unfortunately, last year, I was unable to attend, as my vertigo and hearing were at their worst. I was not going to miss the adventure this time around.

Banded together—nine men strong—we roughed it for three days: building fires with sticks, harpooning fish and snaring rabbits to feed on, having nothing but the clothes on our backs for warmth against the cool fall winds. Admittedly, this may be a slight exaggeration, as we actually stayed in a heated home with three bedrooms, a fireplace, and pre-purchased food. Nonetheless, I spent quite a bit of time in engaging conversation with both friends and those who I had just met. I was in a safe place and was returning to a small part of my old life that had been so suddenly taken away. This “Man Weekend” is always a great time to bond with guys my own age and this year especially, it was another way for me to prove that Cogan's Syndrome does not own or define me.


There were a few activities that my vertigo simply prevented me from taking part in. I was unable to go on the six mile hike up and around a mountain that two-thirds of the guys successfully endured. Truthfully, I probably wouldn’t have been able to get through that prior to Cogan’s. I did, however, walk down a steep hill—holding on to the shoulders of a friend—to a small waterfall with the whole party. On the way back up, a friend of mine stood behind me, hands raised for assurance, while I latched onto another friend as my main support through the treacherous terrain. I couldn't do everything on my own, and I actually needed to use the cane for most of the weekend, but I was there, overcoming, and setting my worries aside.

*****

One aspect of my life that has changed drastically since Cogan's Syndrome first appeared is my work with the youth group at our church. I have spoken about this in the past—how I am passionate about mentoring and leading the teens, but have been unable to hear them or participate in any of their events. Thankfully, since my surgery for a left unilateral cochlear implant, along with the partial improvement of hearing in my right ear, spending time with the youth group has become much easier. I can speak with them, understanding most of their delivered mumbles now.  They have also gotten used to the hardships of my disease as well, doing their best to accommodate by making eye contact and talking more clearly.

On the first weekend of November, Sarah and I led our first retreat with the tenth grade—the ninth grade came along as well since they are a small group. We went back to the house in Vermont that I had been just one week prior (as a side note, let me tell you that I have gone away every single weekend since the beginning of October and I am doing my very best to keep up mentally and physically). We led the students in a study, offered free time, and Sarah led on her guitar in song. It was a successful weekend by all standards, but what I am thankful for the most was the simple fact that I could participate. I could act like myself again around the teens and it was good. I felt comfortable and purposeful: as if I was doing something important again. I haven't experienced that in a very long time.

*****

My brother, Gideon, recently hired me to maintain the social media aspect of his real estate business: posting articles, writing articles, data entry, and bringing in new viewership to their main site. I’ve started out with just ten hours a week, but for me, this is more than enough. I was just talking about not working and now I am so thankful to be doing so again. The idea that I am actually contributing to our income and doing something that I love fills me with satisfaction and a sense of significance.

Cogan's Syndrome does not dictate my decisions. I have not and will not allow it to remove the joys of this life. Every day, I take another step forward, trying my best not to look back.. I know that this is a vital part of my journey, and while the future seems hazy, I trust that one day it will be clear as day.






Friday, November 2, 2012

If I Were Able... (Living With Cogan's Syndrome)


October 1st-7th:

“I feel like I’m letting you down,” I said, unable to make eye contact.

“Max,” Sarah said, grabbing my hands and forcing me to look at her. “You are not letting me down. I only care about taking care of you.”

“I know. I just wish it were the other way around.”

One year ago, I was in engrossed in my first semester of graduate school with a focus on early childhood education. During this time, I also worked for a daycare as a teacher’s aide which I had been doing since 2009. At the end of the semester, after much consideration, consultation with Sarah, and prayer, I decided that graduate school was not the right path for me at the time. I finished the semester in hopes of finding full-time work and shortly thereafter, I grew ill.

In the meantime, Sarah had been working full-time for two-and-a-half years, supporting us while I was in school. It has always been a desire of mine to be able to provide for my family. Sarah is my family--we have no children. It’s just the two of us, but as a man, there is an inherent aspiration that I’ve always recognized. Having witnessed the time and effort that my own father had put into this aspect of life, I knew that, when blessed with a family of my own, I’d do the same. Graduate school seemed like the natural progression after I received my Bachelor’s degree. I wanted to be able to get the best job I could after finishing college. I believed that the pursuit of a Master’s degree would strengthen my chances, allowing Sarah to focus on her creative endeavors.

Unfortunately, plans don’t always go the way we would want them to. Sometimes life can be a bit tricky—in fact, it forced me to reevaluate my goals for the foreseeable future. When Cogan’s Syndrome first let loose, I was unaware of how long I’d be out of commission and unable to work. Eight months later, I am still out of work due to vertigo and hearing problems and even if I believe at some point that I’ll be fit to venture out and work again, I currently have no job to return to. Sometimes I feel like screaming out loud. I want to shout and dramatically knock things off shelves, flip tables and punch holes in walls—it feels as though one of the reasons I was created, part of my very being, was ripped out of me; it’s emasculating.

I’ve had to deal with physical and mental trauma due to my disease, but I’ve also had to consider  the fact that I haven’t been able to help with our finances.  In my opinion, it’s what I should be doing and the fact that I haven’t been able to infuriates me. Sarah has been forced to continue full-time work while I’ve been at home. I cannot express how thankful I am to her for her hard work and endurance. We both understand that she is blessed to be employed and that without her benefits, my health would be in question--perhaps unable to be treated with detrimental side-effects--however, I long to change our circumstances, allowing Sarah more possibilities. I wish that she could enjoy life and focus on her gifts. I want her to be able to sing and write music; to spend time doing art and writing; instead, she is cooped up in a cubicle all day long, doing  work that she is content yet indifferent with, and unable to fully take advantage of her passions.

In our current situation, Sarah and I have decided that I should pursue writing; that I should spend all of my time and what little energy I have on becoming a freelance writer. As much as I love writing and am excited about the possibility of making a living from doing so, I still wish our roles were reversed. I would much rather that Sarah be able to follow her ambitions. In the meantime, I’ll write, and I’ll enjoy it, in hopes that one day, I’ll feel completely useful again.

Thursday, October 18, 2012

Reiki (Living With Cogan's Syndrome)


September 24th:

Months ago—when my hearing and other symptoms were at their worst—I rested in the hospital’s cancer center for one of my first Remicade treatments. Sarah sat across from me during this early infusion session, vigorously working on her laptop, but wholly with me. Due to the severe case of vertigo, I have been forced to wield all of my energy into focusing my eyes; similarly, my hearing loss has demanded that I spend most of my efforts honing in on people’s lips in order to understand conversation. These symptoms of the disease that have caused such turmoil to my body alone can be quite exhausting; however, spending five hours at a hospital, hooked up to an IV, as medication surges through my body, is taxing to say the least.

In and out of sleep, my head falling back and then slumping forward, I awoke to find a short, older Asian woman near my feet at the end of my reclining chair. Under her arm was a clipboard and in her hand she held a small boom box. Through hazy eyes, I noticed her speaking to Sarah, but I couldn’t make out anything they were saying to one another. I caught Sarah offering a smile, mouthing something to the woman, and shaking her head. The woman then turned to me and spoke.

“Hello,” she said, “my name is Cindy. Would you like a Reiki treatment?”

“Ummm…” I said, shifting my body upwards and squinting my eyes. “I’m not sure what you said. Sorry. Can you repeat that?”

She did.

“I have hearing problems. Can you tell me what it’s called again?” I looked past Cindy toward Sarah and noticed her glancing up from her work and smirking at me.

“It’s called Reiki,” she said, moving in closer to me.  “It is a medical practice and relaxation technique in which I place my palms on different parts of your body, transferring universal energy into your body, allowing the medicine to flow through you fast and more efficiently.”

I stared at her for a moment—totally lost.

“Would you like to try it?” she asked.

“Uh, Sure,” I said, able to make out that last part, but unaware of what I was actually getting myself into.

Cindy hooked up the stereo next to me and pressed play. Sarah told me later that the music which I was supposed to be hearing included flutes and nature sounds to help relax me during the process.

“I’m not going to be able to hear that,” I said.

Cindy looked at me, puzzled.

“I’m deaf. I can’t hear music. It’s very faint.”

“Oh,” she said, her body frozen and eyes wide. “Okay. We will try to turn it up.”

She proceeded to move the volume dial to the right and spoke: “Now, close your eyes and try to imagine a place where you are happy and at rest.”

Contorting my face, my eyes squinted open after several moments of silence, “I’m sorry, I can’t hear you.”

“Do you still want the Reiki treatment?” she asked, awkwardly but concerned.

“I’m sorry?”

She repeated herself again.

“No, I don’t think so. Sorry. I just don’t think it will work out that well.”

“Okay. Not a problem,” Cindy said.

As she unhooked the stereo, she said something to Sarah again that I couldn’t hear. Then Cindy turned to me to say goodbye.

“Bye. Thanks anyway.”

She left the room and Sarah looked at me.

“I have no idea what that was all about,” I said.

Sarah shook her head and smiled. The man next to me receiving chemo therapy chuckled and scoffed,
“Reiki on a deaf person!” He then continued to laugh. I didn’t hear him, but Sarah told me later.

                                                                 * * * * *

Today, September 24th, I had another Remicade treatment. I wasn’t sure why, but I had been dreading this for days. It was worse than usual. I was not looking forward to being practically knocked out and losing a whole day hooked up to tubes and drifting in and out of slumber. And there is, of course, always the somber undertone in the place, regardless of the wonderful and friendly staff. Sarah was at her office today, so her mother dropped me off. I slept throughout most of my time there; however, about an hour before I finished up, I woke up to find that a tall, mature blonde woman had entered the room.

“Hello,” she said. “Are you Max?”

“Yes, I am,” I said. My hearing has been doing quite well recently—I understood her immediately.

“My name is Joan. Your nurse, Caitlin, told me that you might be interested in a Reiki treatment. Have you ever done Reiki before?” she asked.

“No, I haven’t,” I said with a smile, thinking back to the first time I attempted Reiki. “I am hard of hearing, but today is actually a good hearing day, so maybe we could try.”

“Yeah? Okay. Let me just get set up,” she said.

Joan placed the boom box on a table next to me and plugged it in. She pressed play and I could hear soft, earthy tones. It reminded me of those old Pure Moods CD compilations that were always advertised on television when I was a kid. I thought that kind of music was strange back then, and I still do today.

“I’m going to place my hands on different parts of your body,” she said, looking me directly in the eyes. “You’ll feel some hot and cold sensations.”

“Okay,” I said warily.

“I’ll start with your feet. Can you take off your shoes?”

Immediately, my nerves ran wild. I had worn my Sperry boat shoes today—without socks! I knew that my feet smelled awful. I could practically smell them while the shoes were still on. This is bad, I thought.

“Oh boy,” I said, “I feel terrible. I don’t have socks on. My feet probably stink.”

This didn’t shake Joan. She was dedicated.

“That’s no problem,” she said, unconcerned. “This will really help.”

“Alright,” my eyebrows lifted as I tilted my head down and then reached to take my shoes off.

“Now, lean back and close your eyes. Imagine a place; a place that you go to find peace and tranquility.”

I closed my eyes and imagined that I was at home with Sarah, lying down on the couch, holding her tightly. I didn’t know exactly what to expect when Joan began. I had never actually seen this enacted before. I’m not sure how I feel about the idea of universal energy streaming through my body, but if it could help me relax more, why not? I thought.

I felt her hands gently grasp my right foot. She’s going to need a lot of soap on those hands after this.  She wasn’t kidding about a cold sensation. That was the initial shock, but just a moment later, my feet warmed up. She continued this process on my left foot about a minute later, and then onto my knees.

Apparently, Reiki did the trick, because I fell asleep in the middle of it—completely knocked out—and woke up about a half an hour later to find that my treatment had almost entirely finished and Joan was nowhere to be found. I’m not sure about the scientific facts behind Reiki, but it did ease me in to a calm and peaceful state of mind. Odd as the practice might seem, it allowed my infusion session to go much smoother than I had hoped for or expected. I think I’ll try it again.

Wednesday, October 17, 2012

Love Notes (Living With Cogan's Syndrome)


September 7th – 14th:

“I am amazed at how quickly you are progressing,” Janet said as we reclined on the opposite side of her industrial-style desk in the audiology department.

“Thank you,” I replied with a smile.

“I know that you’ve lost hearing in your right ear again, but you are doing so well with the implant,” she said.

“Like I mentioned last time, I have one other patient with Cogan’s Syndrome who recently had surgery for the cochlear implant, and the two of you are moving ahead much faster than my other patients.”

“That is amazing,” I said. “I can tell that I’m beginning to really understand voices through the device. Especially now that I have hardly any hearing in my right ear and I am forced to rely on the cochlear implant alone. I did also notice this before my hearing went away. When I’m talking on the phone, I’ve been trying to listen through my left ear in order to give the device something to work with. I don’t do it as often as Sarah or you would probably like,” I told Christy and then peripherally glanced at Sarah’s mother, Michelle. She had brought me to my appointment since Sarah had obligations at work. My mother-in-law gave me a quick smirk and I explained, “but I’m trying.”

“That’s great,” Janet’s eyebrows raised with satisfaction.

Janet mapped my device and adjusted the levels upwards, leaving space for me to get acclimated to the higher levels before our next meeting.

Michelle and I left Janet’s office and headed toward the car.

“Do you think you might ask her at your next appointment when might be a good time to get a hearing aid for your right ear?” Michelle asked.

“Maybe. The problem is that my hearing keeps fluctuating and I never know when or at what level it will plateau,” I said. “I sure would love one, though. Having a hearing aid would make my life that much easier. “

                                                                      * * * * *

September 14th, 2005; midnight. This was the moment that Sarah and I started dating. We had met three weeks prior and became friends shortly thereafter. We spent quite a bit of time together during those three weeks, both of us trying to fight our feelings for the other, attempting to remain platonic—I caved pretty quickly.

Before midnight that night, we walked from the SUNY New Paltz campus to the downtown area and decided to try out a little place called The Village Tea Room. We sat outside, drank tea and shared a slice of cherry cheesecake. When we finished lounging at the comfortable restaurant, we strolled back to campus, engaged in conversation and held hands. We went to the Quad—a large grassy area surrounded by brick dormitories and old-fashioned classroom buildings—and lay out on the grass, unaware of messing up our clothes or getting wet from dew. It was around 11 p.m. and the sky was decorated by a tapestry of stars. We shared our first kiss before I walked her back to her dorm.

We sat outside on a bench, underneath a lamppost, ten minutes until midnight. I was already thinking ahead: I felt weird about a potential anniversary on the 13th, so I told her we should wait until 12 a.m. Sarah looked at me with an odd expression and conceded. I asked, she said yes, and thus began our relationship.

Two years later, on our anniversary, I told Sarah that we should reenact the night that I asked her to be my girlfriend as a fun way to celebrate. We went to The Tea Room, to the Quad, and sat on the bench outside of what used to be her dorm—at this point she had an apartment off campus. While sitting on the bench, the last ten minutes before midnight seemed like hours. My heart pounded. Though it was cold, my forehead and underarms began to perspire. I was hiding something from her and I was anxious to reveal my true motives behind our romantic evening.

One minute before midnight, I grabbed Sarah’s hand and walked with her under the lamppost. I told her how much I loved her and that I wanted to be with her for the rest of my life. I pulled a small box out of my pocket—Sarah’s eyes widened—and I proceeded to lower myself until my knee was pressing on the cement walkway.

“Will you marry me?” I asked.

“No…”she let out a gasp and covered her mouth.

Well, I wasn’t expecting that.

Thankfully, the “no” was just an exclamation of shock.

“I mean, Yes! Yes!” She cried out. I put the ring on her finger and we embraced.

                                                                     * * * * *

Today, seven years after we began dating and five after our engagement, Sarah and I thought it would be fun to celebrate in the same way.

                                                          (Reenactment of the proposal)

                            (Reenactment of the "Yes!" Though this looks more like, "Why not?")

She had to work before we could make the trek out to New Paltz from Connecticut. Sarah works only ten minutes from where her parents live, so I dropped her off and spent the day at their house. When it was time to pick her up, I got in the car, turned the radio on and drove carefully down the road.  I have regained some hearing in my right ear over the past week, so I thought, Why not give it a try? Immediately, I heard a song that sounded familiar.
                                                             
                                                                     * * * * *

A couple of weeks ago, our friend, Ronnie, was visiting from New York. The three of us sat in our living room, gathered around the computer, watching the music video for FUN’s “Some Nights.” About two minutes in, being unable to recognize most of the sounds from the song, I became utterly frustrated and removed myself from the room. Sure, not having the ability to hear music for months has had a negative effect on me, but this was different.

FUN is a band comprised of musicians from two of my favorite bands. Not being able to hear this brilliant collaboration was devastating for me. I didn’t want to return to the living room until the song was over.

                                                                     * * * * *

When the song played through the car stereo, I recognized it immediately from what I had remembered hearing weeks before; only this time, it sounded good. I could make out the singer’s voice, the instruments, and the blend of all of the sounds. This was the first time since February that I was hearing a song and actually enjoying it. Not only that, but it was a new song. This was a song that was not around before I first got sick.

As I neared Sarah’s office, my eyes welled up with tears. I was hearing new music and it was glorious!

I entered the parking lot, pulled over just outside of Sarah’s office window, and sang out loud. Sarah walked outside with a hop in her step, looking thrilled to see me.  Just as she approached the car, the song ended. My hand pulled the door-handle and my body moved towards Sarah without a thought.  As my arms wrapped around her, I kissed her forehead and said, “I have something amazing to tell you.”

“What is it?” she asked as we both got into the car.

I told her what I had just experienced and all of the emotions that I was feeling at the moment. 

“This is the best news I’ve heard all day,” she said as she began to cry. “I think at your next appointment we should tell Janet and finally talk to her about a hearing aid.”

“I think so.”

We held each other for a moment and then left for New Paltz—off to celebrate not only our anniversary, but now the first day I enjoyed music again as well.

Friday, October 5, 2012

I Hear You (Living With Cogan's Syndrome)

August:

I stood at the kitchen sink, scrubbing delicately at the dishes when I heard Sarah’s voice from the living room.

“Max, can you come here for a second?”

 I turned off the faucet, placed the unfinished glass back down in the sink, dried my hands, and ventured into the other room to meet Sarah.

“What is it, baby?” I asked, nudging our cat, Oreo over—to her displeasure—so that I could sit next to Sarah on the couch.

“First of all,” she said with a look mixed of bewilderment and satisfaction, “you heard me!”

I thought about this for a second, cocked my head to the side and grinned. “Yeah, I guess I did.”

“You heard me, Max. How awesome is that?”

“I know, it’s very cool,” the excitement and realization that my life was coming back began to hit me. I internalized the idea and continued on.

“I guess I’m really progressing, huh?”

“I can’t believe it,” she said. “You’ve come so far. I’m proud of you.”

Sarah leaned in and wrapped her arms around me. I latched on to her. Together, we sat on the couch in an embrace that meant times were changing; that meant whatever else was going on could wait. I don’t even remember what it was she wanted to tell me. And it doesn’t matter. Moments like this overshadow the small details of daily life and open up my soul to just a little more hope.

                                                       (Making life a little easier each day)

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.

“Okay.”

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.

“Hello?”

“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.”

“Okay.”

“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.

Thursday, August 30, 2012

A Tale of Two Brothers...Well, Three (Living With Cogan's Syndrome)


July 6th – 8th:

I have two older brothers: Casey is ten years older than me and lives in California with his family. Gideon is six years older than me and lives with his family in Michigan. I've always been very close with my brothers, even when we haven't contacted each other on a regular basis. No matter what, I still consider them my best friends. That's why Sarah and I did our best to make it to New Paltz this past weekend—Gideon and his four year-old daughter were visiting.

I look up to my brothers. As a kid, I listened to the same music that they were into: Smashing Pumpkins, the Beastie Boys, and Alice in Chains. I would dress my skeletal body in baggy clothes like them, decked out in JNCO Jeans and their hand-me-down, extra-large t-shirts.

They taught me how to play “doorknob.” When an individual...passes gas...the said individual must say the word “safety” before another person calls out “doorknob.” If the passer of gas fails to exclaim “safety” before “doorknob” is bellowed, anyone near the flatulater is given ample opportunity to punch the releaser of gas until he/she has touched a doorknob. Needless to say, it would take me quite some time to reach a doorknob and plenty of bruises enjoyed their stay on my body as age and numbers almost always won out. But it didn't matter; that's what brothers do.

We would take long car trips with my parents to Florida to visit my grandparents. Five people in a small sedan, squeezed tightly together for two whole days. I, of course, would have to sit in the back of the car in the middle seat, while my brothers sat on opposite sides of me. They would shove me back and forth for hours at a time. I hated it but I secretly loved the attention.

When I was in middle school and a 10th grader bullied me on the bus, Gideon—a senior in high school at the time—made sure that I was never picked on again. He also let me hang out with him and his friends (which I don't believe is very common for an older brother to do). Casey was a person to cry with when two of my friends passed away. My brothers have always looked out for my best interests and they gave me one heck of an awesome “Best Men” speech in which they called me an “albino sasquatch.” They are honest with me and can easily joke with me.

*****
Sarah and I had had a very busy week. I was still recovering a little from surgery, even though my implant was activated a week ago. I hadn't returned to physical therapy yet, so my balance was still giving me problems and I was overly tired. Sarah worked on Monday, then on Tuesday we drove to Rhode Island to stay with her sister, Kimberly, and her husband, Lukas, at their rented beach house until Thursday. While there, Sarah and her father worked on their laptops at a local Panera Bread. We returned Thursday night and then Sarah had to work all day Friday before we were able to make the trip to New Paltz. On top of all that, because I can't drive long distance, Sarah did all of the driving throughout the week. We talked about it and decided that despite our tired minds and bodies, we would persevere and make the trip to see my parents, my brother, and niece. We hadn't seen Gideon since Thanksgiving—he had yet to see me in person since all of my troubles began.

We arrived around 7:30 pm and were greeted by the family in my parent's kitchen. Sarah and I hugged Gideon and his daughter.

“It's so good to see you,” Gideon said as he let go of his embrace and looked me in the eyes.

“It's really good to see you too,” I said. “We've missed you.”

We all sat around the table and talked about Gideon's job, his wife (who couldn't make it due to being eight months pregnant), and my implant.

“I think of you like a cyborg,” my mom said. “It's cool.”

“Yeah, like the Borg?” I asked with a smile.

“Yeah,” she said and then went on to tell us about one of the books she'd been reading that related to the matter. My mom is a children's librarian. She is constantly bringing home new teen and young adult books to read before releasing them into the library system. She always tells us about the books as well, because many of them have some sort of science fiction or fantasy element involved and she knows that I am a sucker for those particular genres.

I left to go to the bathroom and while I was gone Gideon spoke.

“So...is it okay to joke about all of this?”

“Oh yeah,” Sarah said. “We need to be able to joke about it; otherwise we'll just be depressed all of the time. There is, of course, a line that shouldn’t be crossed as far as joking around versus making fun is concerned. We know people who have crossed that line. We truthfully don’t think they even meant to do it; they just don’t know how to react to the situation. Anyway, yes, we can joke about it. It keeps us sane.”

She told me about that conversation later. I think that because Gideon hadn't seen me since before the onset of Cogan's, he was unsure of how sensitive the subject matter would be. As the weekend progressed, we would come to find this out even more so.

On Saturday, after spending the morning with my parents, Gideon and his daughter, Sarah, and I spent the rest of the day together. We were originally planning on going to the pool for a bit but unfortunately, it began to rain. This brought our niece to tears.

“Oh, come here, sweetie,” Gideon said, lifting her up into his arms. “I know you're sad. We'll still go out with Aunt Sarah and Uncle Max and do something fun. And if it stops raining, we'll go swimming. Okay?”

“Okay,” she said as she wiped her eyes dry.

The four of us drove out to town and decided to go to the indoor rock climbing gym. Sarah and I opted out from actually participating—I'm not sure how well I would have managed. My brother asked Sarah why we didn’t want to try and she mentioned my vertigo. He looked like he felt guilty and said, “I’m sorry. I didn’t even think of that.” She assured him it was really no problem and we were there to spend time with them above everything.

Gideon and his daughter were naturals. Apparently, Gideon had been on a rock climbing team in high school and was now swinging from rock to rock, wall to wall. The woman working behind the front desk gave our niece a stuffed dog to hold on to, as her nerves started to kick in at first. Happy with her new side-kick, she tried climbing up before the harness was even attached. She got scared and didn't want to continue, so Gideon and the man working there tied the doggy to the harness and let it climb the wall first. It was pretty adorable to watch our niece's expression change from frightened to intrigued and excited. They hooked her up with the dog at her side, and she made her way up the wall with ease. If we had chosen to joined them, I’m sure she probably would have put us to shame.

It had stopped raining when the two of them were all finished, so we drove down the road to the town pool. We all started out in kiddy pool, which in retrospect, I should have remained in. Sarah and I went over to the five foot deep water and climbed in. Immediately, I closed my eyes and swam under water, thinking nothing of my current state. This was a mistake. Somehow, I hit my head on the side of the wall, which didn't hurt, but it threw me off. I tried to swim up—back above water—but I kept hitting the side. I couldn't figure out how to make to the top. I began to panic and was starting to lose my breath when I finally—by the grace of God—burst through into open air. Gasping for breath and finding the side wall, I stayed there for a moment, collecting myself.

“Are you okay?” Sarah shouted from about 20 feet away.

“Yeah...” I breathed heavily. “I'm okay. Just had a little scare, that's all.”

She swam over to me and hugged me.

“What happened?” She asked.

I told her and then we both decided that I better save swimming under water for another day.

I do that every so often: forget about my new disability and try to do things the way I used to do them. I’m not sure how to stop that since I think it’s just instinct.

After we all got out of the pool and put our regular clothes back on, we watched out niece for a few minutes on the playground while Gideon made a phone call. As we played with her and chased her around—Sarah doing most of the chasing—I realized something: this was much harder than I expected. Five minutes later, I was physically beat. Dizzy and exhausted, I sat down and let Sarah take over. I thought about my job, which I haven't been to in over four months and wondered when or if I would ever be able to work with the kids again. It was a strange thing to think about. Working with children has been my life for the past ten years. I want to be able to run again. I want to be able to play with my own children and chase them around the yard one day. Please, God, don't let this vertigo control my life forever.

Finally, we went out to eat for a late lunch. Sarah got up to use the restroom and while seated, Gideon and I had a heartfelt conversation. One that I think was a very longtime coming.

“I have to tell you,” he said, “last night, when everyone went to bed, I stayed up until about two a.m. reading your blog. When you began writing it, I read the first couple of posts, but then I got pretty wrapped up in my own world and hadn't gone back to it.”

“Oh yeah,” I said, understanding and not upset.

“Yeah. I have to apologize. I've known what you've been going through. You've been on my mind. But I don't think I really knew the full extent of it. Reading the post about us talking on the phone really got to me. You said it made your day, and that's great, but I feel like I should have done more.”

“Oh, Gideon, it's okay, really.”

“No. It's not,” he shook his head. “I remember reading the post awhile back about how your doctor told you that you would ‘get your life back.’ I was at work and I just broke down. So, my thoughts have been with you, but I just get distracted with my everyday life.”

At this point, Sarah returned, but we continued to talk.

“It's okay, Gideon. I understand,” I said. “It's been hard but I know that you love me and care for me. I also know that you're having your second child soon and things are very busy for you.”

“Well, I just want you to know that I am glad you are doing better and I am happy that when you can talk on the phone to me, that's enough; but I also want you to know—and I'm sure you wouldn't feel comfortable asking—but if you need anything...anything...”

“Thanks. We really appreciate that,” I said.

“We'll just leave it at that,” he said. “I love you.”

“I love you too.”

Same shirt, different guy

*****

On our way back to Connecticut today, Sarah and I talked about our time with Gideon.

“It was really nice to see your family this weekend,” she said. “We have such a cute niece.”

“I know. She was a lot of fun this weekend. And she's amazing at rock climbing!”

“I know!”

“It was awesome spending time with Gideon. I think that, personally, I had the best time with him this weekend than I have in years,” I said.

“Oh, I know. Me too. It was just so easy,” Sarah said.

“Yeah, and though I wasn't upset with him for not reading my blog and not keeping in close contact with me, I was very happy that he talked to us about it and apologized. I think that seeing me this weekend, in person, was eye-opening for him.”

Gideon and I haven't stayed in contact much through my illness-driven months, but I am glad that we care enough about one another to make a change. I felt that our open conversation brought us to a new level of understanding and I'm thankful for that.


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.

Tuesday, August 14, 2012

Mortal (Living With Cogan's Syndrome)


June 17th – 27th:

I had one week left in my high school career and not much going on. I had just finished a dodgeball tournament after school and was pulling into the driveway when I noticed my older brother, Casey, phone in hand, walking down the steps of our porch to greet me. He came up to the driver's side door, his face sullen and hesitant. He explained the accident to me and how the impact was so devastating, that she didn't feel any pain. He pulled me in and I wept on his chest at the news of my 17-year-old friend's death.

Two years later I sat amongst a small group of guys in the living room of a friend's house and listened to one of them speak.

“I have cancer,” he told us.

I watched and suffered alongside him for months as his life was eaten away by an illness that desecrated his body and left him as little more than a shell. He had been 21 for six days—five of which he spent in a coma—when I answered the phone call that I knew would come, but was never ready to receive.

I've witnessed more death and battles with health in my brief life than I care for; I've watched the agony of disease-stricken bodies, families struggling with loss, and short timetables of existence; I've felt the pain of others and dealt with my own through those instances.

These events impacted my life and helped me to realize that the life we are given is short. They caused me to put more value in relationships and the gifts of God; unfortunately, they did little to change my personal concept of the unknown. I don't often think of the “big picture” or in any sort of philosophical manner. I tend to live my life as it happens. I probably wouldn't have realized that I even think this way if my wife hadn't noticed how different we were in this sense when we first met. I didn't think myself invincible, but I hadn't put enough thought into the idea that something could actually happen to me. I'm 26-years-old and I now know that anything is possible; even disease in a seemingly healthy young man.

I had cochlear implant surgery almost two weeks ago in hopes of hearing again through my left ear. I'm now days away from having my device activated; two days away from hearing sounds and voices again; two days away from a new beginning; but the journey thus far, and more recently the past two weeks, have not been easy.

“Ready to take off the headdress?” Sarah asked as I lay on the couch with my legs over her lap.

“Yes!” I exclaimed.

I was ready. It was sunday, just two days after surgery, and I wanted nothing more than to take this next step.

We went to the bathroom and Sarah unwrapped the fixture from my head.

“Should we save it?” She asked.

“I don't know,” I said. “Isn't that kind of weird?”

“I don't think so. It's up to you, though.”

“Nah, I don't want to.”

“Really? Are you sure? It might be nice to save—to remember,” she said.

“No, let's throw it out.”

Sarah was probably right.

I took a shower—I wasn't allowed to until then—and washed off all of the dried blood that had formed to the side of my head. When I was all finished washing up, Sarah cleaned the back of my ear with hydrogen peroxide and triple antibiotic. Then she cleaned the inside of my ear with a cotton swab, removing wet and dry blood. We took a cotton ball and squeezed it into my ear to stop the red liquid from trickling down my face. This process is something that we have since had to maintain twice a day, for the past two weeks.

Sarah was able to take off work the day of my surgery, as well as the following Monday. When she needed to return, her boss allowed her to work from home the rest of the week, so that she could take care of me. This included the ever-so-delightful task stated above (cleaning my scar and the persistent drip from my inner-ear), as well as picking up treats for me: ginger-ale, rice pudding, and chocolate pudding.

Sarah and a friend went to the Greg Laswell concert on the 19th. After everything that we've been through, and all that she's had to sacrifice, I was happy for her to go and have an enjoyable night. I was still in rough shape—my balance was way off, quite a bit of pain lingered, and exhaustion prevailed due to all of the medication—so I stayed at my in-law's home that day and Sarah's mother took care of me.

I haven't been able to move around on my own too much in the last two weeks as I mentioned in my previous post. It's amazing what surgery can do to a person. The operation itself is a necessary step in ensuring some recovery; however, the effects have produced a set-back in my physical improvement; I can't exercise, workout, or drive.

I've had a lot of time to think about my situation. I had a tough time coming to terms with my illness for months. This isn't supposed to happen to me, I thought. This is not my life. These things happen to other people or they'll happen to me when I'm old. I didn't want to think this way, so I worked at getting better, striving to once again have a normal life. I may have taken a few steps back since surgery—it's a difficult ongoing battle—and I could easily wallow in my pain and circumstances; but I won't allow myself to get to that point again.

I'm 26-years-old. Having bore secondhand witness to numerous traumatic events that have helped to shape my thoughts on life, I am currently in the middle of a difficult personal excursion of my own and there is only one thing that I can do: grow. I can't sulk forever or pretend that it isn't happening. Sure, some days will be harder than others—days in which I'll be angry and want to give up—but right now, all I can do is learn from the past and the present and move forward.

Wednesday, August 8, 2012

Blood Before Play (Living With Cogan's Syndrome)


June 16th:

I woke up around 8 a.m. the morning after surgery and really needed to use the bathroom.

“Sarah,” I whispered as I shook her body the same way I do most mornings—enough to wake her up, but gentle enough not to startle her. “Sarah.”

Her head moved slightly and I could hear the faintest response, “Hmm?”

“I need to go to the bathroom. I'm sorry, can you help me?”

“Sure, honey, of course,” she said, opening her eyes and gazing at me with that look she's given me a thousand times—the look that says, “I am here for you. Don't ever apologize.”

Sarah pulled the covers away and got out of bed. She walked over to the dresser where my cane was leaning and grabbed it. She then came over to me and helped me out of bed. The surgery had wiped away most of the progress that I had made with my balance. I took hold of Sarah's waist and she guided me to the bathroom. Like the old days, I thought. When we got there, she handed me the cane and I closed the door.

When I was ready to go back, I grabbed my walking stick and stepped towards the sink to wash my hands.

“Whoa!” I said after looking in the mirror.

“What is it?” Sarah asked through the door.

“Come in and look.”

Sarah opened the door and I pointed to the circular cup portion of my headdress, which was now completely a dark shade of red. I ignored the puffiness and slight bruising around my eye. I knew to expect that.

“Wow. Okay. Are you worried?”

“Yeah, a little,” I said with a slight crack in my voice.

“Oh, sweetie. I'm sure it's okay. Maybe we should change it,” she said.

“I don't know. Can you call Dr. Mazen and ask first? He said not to change it for 48 hours and I want to make sure this is normal.”

“Sure,” she said, “although I'm not positive he'll be in since it’s Saturday.”

Sarah brought me back to the bedroom and helped me into bed. She called the doctor's office and left a message on the emergency line.

“We'll just wait a little while until we hear back from him,” she said returning to bed.

“Okay,” I managed to get out as I cried softly.

The trauma from yesterday, it seemed, was still getting to me. Sarah wrapped her arms around me and held me until I calmed down—kissing my forehead and stroking my hair.

Sarah's phone rang and she was gone for about five minutes.

“That was a different doctor from the office,” she said, “but he said that it's totally normal for you to be bleeding this much. He asked if we have any extra gauze—which, thankfully, we do because the nurse yesterday gave us some to take home. He said that we can take the dressing off, remove the layer that is blood-stained, and replace it with the new gauze. He told me that the new gauze will probably soak up a lot of blood also, but by tomorrow, when we take it off, it should slow down.”

Sarah brought me back into the bathroom. I used the toilet as a chair and she got ready to unwrap my headdress. We were both nervous about what the incision might look like and just how bloody it could be. As suspected, it was a blood-drenched mess inside. While the small, plastic cup was resting away from my left ear, we decided to take a peek at the scar. It was difficult to see because of all of the dried-up blood, but it sure looked cool—if you're into that sort of thing.

“Max,” she said. “this may sound gross, but I think they actually peeled your ear all the way back during surgery.”

“Yup. That's gross.”

                                                           (My scar after a nice cleaning)


Later in the afternoon, while I was lying on the couch—covered in blankets and with my head elevated—Sarah's sister, Kim, and our brother-in-law, Lukas, came over with their eight-month-old daughter to see me and spend time with us. To my delight, they brought us dinner from Shady Glen—cheeseburgers and fries! Shady Glen is an old-fashioned diner where they always fry the edges of cheese on the burgers. Sarah chopped up my food again and we ate and talked.

“How are you feeling?” Luke asked.

“Tired and in pain...but really happy. I'm so happy you guys could come over,” I said, tearing up on cue.

“Of course,” Kim smiled.

“You better be careful, though...I've been crying quite a bit.”

Sarah told them about how I cried yesterday when I found out that she bought cookies.

Shortly after dinner, our friend, Ben, came over with a paper bag full of books for me to read and some ice cream.

“Have you read any of the Halo books?” he asked.

“No,” I said with dazed eyes. “I haven't.”

“Well, I brought you a bunch.”

He pulled out various books based on the Halo video game series as well as Wicked by Gregory Maguire.

“Oh, I've always wanted to read that. Thank you.” I said.

“No problem. So how do you feel?”

I explained to Ben everything that I had told Kim and Luke, but there was one thing I forgot to tell them about.

“Oh, and I'm not allowed to...blow my nose.”

“You can't blow your nose?” Kim asked.

“I know! I was also told...that I shouldn't...pop my ears. I didn't know that I wasn't supposed to do either until Sarah told me—after I found out the hard way. I popped my left ear...it was excruciating.”



We talked—well, everyone else talked for the most part—and we ate ice cream. I drifted in and out of sleep and remember various conversations that I think were about hunting and fishing but I can't put any of it into words.

After they all left, Sarah spoke.

“That was nice, huh?”

“What?” I asked.

“I said that that was nice…them visiting.”

“Oh, yeah. It was really nice...it made my day.”

This is the beginning of recovery: my head hurts; I'm overly exhausted from the pain and medications; I cry all of the time. It'll be worth though, I know that for sure.