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.

“ 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 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 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.

Friday, August 3, 2012

Surgery (Living With Cogan's Syndrome)

June 15th:

Aside from hearing the occasional voice, tinnitus has plagued my ears—various tones buzzing and screeching through my right ear; noises that only I recognize. To make matters weirder, I’ve also experienced voices in my left ear. I know, I probably sound like a lunatic; however, I’m completely serious. These aren’t your characteristic voices, whispering dangerous thoughts into my mind. What I’ve heard sounds more like a radio station playing in another room. I’ve heard music—mainly brass instruments—coinciding with what typically resonates as a car salesman; yet I can’t make out exactly what he’s saying. Sometimes, though, I swear I hear him emphatically encouraging his listeners to buy a “new Hyundai!”

One night while lying in bed, after weeks of not telling Sarah about the strangers in my head, I decided it would be best to let her know.

“Really?” she asked. “Why haven’t you told me about this before?”

“I guess I just got used to it after a while,” I said.

“Have you looked it up to see if anyone else has experience the same thing?”

“No, I haven’t,” I said. “Maybe I’ll do that now.”

And so we did. I went into the living room, grabbed the laptop, and returned to bed. I researched for a little while Sarah read The Lovely Bones by Alice Sebold.

“I’m not crazy!” I shouted, after I had found an article defining my symptoms.

It turned out that what I’d been experiencing was called “non-psychiatric auditory hallucinations.” Apparently, this type of hallucination—not to be mistaken with “psychiatric auditory hallucinations” (those are the ones in which the person hears voices speaking directly to him or her)—is very common for individuals who lose their hearing.

A few days later, while having dinner with my in-laws, Sarah and I told her parents about what we had found out. During the course of the meal, my father-in-law would imitate his impression of the “voices in my head,” whispering in my ear in an eerie, low, gruff voice, “Maxy…Maxy…” Suffice to say, I couldn’t hear him and didn’t know he was doing it until everyone at the table was laughing and Sarah had to clue me in on the joke.
For months, my two ears played these tunes inharmoniously. Thankfully, that is all about to change.

This morning, Sarah and I got ourselves ready and made our way to the hospital, as I was to undergo cochlear implant surgery. Originally, the date was for ten days from today; however, Sarah received a call last week from Dr. Mazen’s assistant, Amanda. She wanted to let us know that there had been a cancellation and asked if we would like to move the surgery to June 15th. After very slight consideration, we decided that this would be a great opportunity to push everything up and rejoin the hearing world sooner!

We arrived at the hospital and the valet parked our car for us. We walked to the surgical waiting room and signed in. Sarah received a card with a number on it representing my surgery. The card stated that when my surgery was finished and it would be time for visitors, the number would come up on a screen in the waiting room and Sarah would be allowed to go see me.

While seated, a lady called out my name. Sarah and I followed her behind the front desk and sat down at a table where we had to give her all of our information. Once we were finished, we were asked to sit back down in the main area. A few minutes later, another lady called my name. She guided us into an elevator and then into an office with multiple rooms. She asked me to go in one of the rooms to change into the surgical gown and for Sarah to wait outside. When I was all finished, I opened the door and Sarah came in along with a female nurse.

After about two minutes of trying to find a vein in my arm, the nurse slid an IV through my skin. I must say, considering that I have to get blood work done every two weeks, and that I have to have an IV hooked up to my hand once a month, I have grown accustomed to medical professionals who are highly capable of finding a vein with ease. Usually, the person administering the needle will say, “wow” or, “Thank goodness you have such nice veins.” It seems as though regular doctors and nurses who may not have as much practice with this sort of thing have a hard time performing this task—and they end up causing me more pain than expected.

The next person to come into the room and greet me was a large, jolly, male nurse with an English accent—though I couldn’t tell since my hearing was poor again in my right ear. He told me that he would be in the room, helping Dr. Mazen during surgery. His job, it seemed, was to prepare me for surgery by making me feel comfortable with his demeanor and humor. If that was the case—regardless of my inability to hear him—it worked.

A few minutes after he left, the anesthesiologist came in the room with forms for me to read and sign. Sarah and I arrived at the hospital today with some nerves, but they were minimal at best. There were some serious possible side effects from surgery that we were made aware of when we first set the date a few weeks back. After reading through the possible side effects of the anesthesia, it was clear that there was more to be worried about through the process of putting me asleep: nausea; nerve injury; paralysis; my worst fear—being aware during surgery; or death! What the heck? Death?

Finally, about fifteen minutes before surgery, Dr. Mazen—who would be performing the surgery—surprised us with a visit.

“How are you feeling?” he asked as he sat down on a stool next to me.

“A little nervous,” I said, “especially after reading about the possible complications of general anesthesia.”

Dr. Mazen gave offered a faint smile, discarded the notion with a wave of his hand and tilted his head in reassurance.

“You’ll be fine. Surgery will go well,” he said.

“I know,” I smiled.

“How has your hearing been?”

“Actually, I’ve had pretty good hearing in my right ear for about a week, up until today,” I replied.

His lip curled as he shook his head with a slight motion.

“Well,” he said, “this will be a huge step for you. I really believe this is the best decision.”

“I do too.” I said and Sarah nodded in agreement.

“Okay. I have to get going. But it should only be about ten minutes or so,” he said.

“Great! Thank you.”

Dr. Mazen headed out and Sarah and I looked at each other.

“How are you doing?” I asked.

“I’m fine,” she said. “I have been feeling pretty nervous, but I’m calming down and realizing how big this is for you.”

“I’ve been feeling all sorts of emotions. I was nervous earlier this morning but also excited. This is a big step that I’m really looking forward to taking. The form we just had to fill out didn’t help with the nerves, though. I’m sure it’ll be fine.”

The anesthesiologist returned to bring me to the operating room. Sarah and I kissed and hugged tightly and parted ways. It happened fast. She returned to the waiting room where her sister, Christin, and her brother-in-law, Matt, had arrived. They had driven out a fairly far distance to keep her company.

When I entered the surgery room, I was ushered to the operating bed. I lay down and immediately felt cold. Before I had a chance to ask, the friendly male nurse that I had met earlier placed blankets on me. Mind reader, I thought.

The anesthesiologist showed me a piece of paper. There was a phrase on the sheet that said, “I’m going to
administer the anesthesia now.”

“Okay,” I said.

After a moment I spoke again.

“How long will it take for me to start feeling tired?”

He wrote on the sheet again.

“Not long,” it said.

I opened my eyes and saw a female nurse nearby in a room I did not recognize. Exhausted and groggy—eyes still adjusting to the fluorescent bulbs—I looked around and didn’t see anyone I recognized.
The nurse showed me a piece of paper that said, “Surgery is all finished. You’ve been in recovery for a while now.”

“It’s over? Didn’t I just go under? Are you sure?”

She smiled and nodded.

Just a minute later, I looked over toward the entrance to the room and saw a beautiful, blond-haired woman walking towards me with a smile on her face. It was Sarah. I smiled back at her with tired eyes.

“There he is. Hi, honey,” she said as she grabbed my hand and held it tight.

“Hi,” the word dragged out. “Are you sure the surgery is over?”

“Yes. I’ve been waiting for a couple of hours.”

“It feels like I just went to sleep a few minutes ago,” I said as tears fell down my face. “I don’t know why I’m crying.”

“That’s okay,” Sarah said. “It’s been a traumatic experience.”

“I’m just so happy.”

Even though I was still waking up and having a hard time comprehending that it was all over, I was thrilled that Sarah was with me again. I asked if Christin and Matt were still there, but they had already left. Sarah looked at me sympathetically said they weren’t sure if I would want a lot of visitors. I hadn’t been certain myself before, but now, I felt a strong longing to be with as many loved ones as possible. Sarah sat by my side for a few hours in recovery.

The first pain medication that they gave me—which I’m unsure of the name—relieved the wincing pain on the side of my head, but caused me to have a difficult time breathing and feel pressure on my chest. The nurse and Sarah both talked to me and helped me to calm down. Next, they gave me Vicodin pills which seemed to do the trick while at the same time triggering an even stronger case of fatigue.

It wasn’t until I got up to use the restroom hours later that I saw my headdress in the mirror. It was a plastic dome-shaped cup covering my ear with a Velcro strap wrapped around my forehead. Gauze filled it and a light red hint of blood appeared on the bottom layer. My face was pale and my cheeks still looked a bit puffy from the prednisone steroid I have been taking.

When they finally agreed to discharge me, Sarah picked up the car and drove it to the main entrance of the building as the nurse pushed me in a wheelchair to the elevator, down a couple of floors and outside.

On the way home, Sarah and I talked about the surgery.

“I’m so tired,” I said.

“I know. It must be hard.”

“Yeah. Have you talked to your family yet?”

“Not yet,” she said.

“I’d like to see people tonight, if anyone is able.”

“Are you sure? We could wait until tomorrow," she said.

“No. I really want the company.”

“Alright. I’ll call my parents.”

Sarah and I stopped at Stop and Shop before going home. We needed to pick up my pain medication (Percocet) along with some other prescriptions. I waited in the car while Sarah went to purchase the goods.
When she returned, she had more than just the drugs.

“I bought you some ginger ale and I bought you peanut butter chocolate chip cookies!” she said.

“You bought me cookies?” the joy of those few words brought more tears.

“Of course, sweetie. I also talked to my mom and she and my dad are going to come over in a little while with dinner. I texted your parents and let them know that everything went well and that we’re on our way home.”

“That’s great,” I said with a dazed grin.

We returned home and I eased my body down on the couch. Sarah helped me change into a new t-shirt and smiley-face pajama pants that my friend Dan would be proud of (he’s always had an odd obsession with smiley-faces that rubbed off on me in some small ways).

A little while later, Sarah’s parents arrived with food from Boston Market and rice pudding. I recently discovered my appetite for rice pudding when Sarah’s mother brought it over earlier on in my illness.
Sarah’s parents came into the living room, walked over to the couch and hugged me.

“I’m so thankful you’re here,” I said, crying again. I couldn’t stop crying and I could tell my emotions were affecting everyone else as well.

I sat down at the table with them for dinner. Sarah and her mom cut up my food into smaller-than bite-size pieces because I could barely open my mouth due to the pain. It took me about an hour to eat my meal, but I ate the whole thing and Sarah and her parents gladly sat with me. We started playing a game in the living room afterwards and I was quickly asleep.

It’s been a long day, and it will take a little bit of time to recover; however, I am feeling very grateful. The thought of hearing again, of enjoying social functions, watching television, listening to my wife sing, is overwhelming. This year, I have experienced more physical, emotional and mental hardships than I ever could have guessed and at times it felt as though I would never be normal again. In two weeks, my audiologist will be activating the implant, and I see clearly that I have been brought to a new plane of possible, replacing my world of impossible.

Wednesday, August 1, 2012

I Wish I Could (Living With Cogan's Syndrome)

Early June:

The winter and spring months were trying this year, as I developed Cogan’s Syndrome and became accustomed to mainly indoor undertakings; unable to partake in any strenuous—even normal—doings. It’s now summertime and for most people, there are an abundance of activities to choose from: strolls through the park; jogs along wooded trails; berry picking; dancing at weddings. I also hear the beach is a big hit these days—not with me, however, as my whole body tends to feel like it’s on fire afterwards. Rather than sporting a nice summer glow afterwards, my skin just returns to its ghostly white color. When I was younger, kids nicknamed me “Casper.” So, no, I don’t really enjoy the beach.

What do I wish I could be doing right now as summer begins? I wish I could ride my bike; I wish I could run around on the playground at the daycare with the kids whom I haven’t seen in months; I wish I could walk around outside, enjoying the warm weather for more than twenty minutes, without every ounce of energy being drained from my body. Oh, how I wish.

My hearing loss has prevented me from such things as listening to music, having normal conversations, etc. Vertigo thwarts me from feeling like a normal human being. I want to be able to do all of those things, but feasibly—for the foreseeable future—it’s impossible.

Recently, Sarah and I were driving home from an appointment when I noticed a bicyclist riding by.

“I’m hoping that, at some point,” I said, “my balance will return enough so that I’ll be able to ride my bike. I love riding! It’s so relaxing.”

“Yeah, I know. That would be good exercise for you, too,” Sarah replied.

“Yeah,” I said. “Could you imagine me trying to ride now? I’d get on, wobble around for a minute, and then fall off.”

We both laughed at the thought. It was easy for us to joke about my situation. I even think that at times it’s important to joke around, otherwise I’d be depressed more often than not. Regardless, some days are still harder than others—especially as summer approaches and I can’t do things that I could easily do just one year ago.

Sarah and I go for walks and I try my best to focus on the objects in my view, walking at a slow pace in order to hold back the dizziness. Unfortunately, after just a few minutes, I need to wrap my arm around her shoulder for support—not that the act of holding onto her bothers me. I’m grateful that Sarah is there to help. I thank God for her every day, as I’m not sure how I would manage without her by my side. It’s difficult, nonetheless, to face the fact that I can’t do certain things on my own. I often struggle with the fact that I “need” someone else to help me do something as simple as walking—an aspect of life that should just come naturally.

For now, I’ll stick to things that I can do: short walks; close-distance drives; writing. I’ll continue to hope that someday—soon, perchance—I’ll be able to add more activities to the list.

Summer is here; yet, it still feels like winter to me.