Monday, July 22, 2013

It's Not Always Easy (Living With Cogan's Syndrome)

July 21st, 2013

Sarah and I trekked our way from Windsor back to our home in New Milford an hour and a half away. It has been a mentally and physically draining few weeks since our move and nothing has slowed down. While driving, Sarah and I began to reminisce about my time on the steroid, Prednisone, during various stages of my life with Cogan’s Syndrome and the effects that it caused on my body.

“That must have been really hard for you,” she said, “gaining the weight and experiencing the onset of adult acne.”

“Yeah,” I replied. “I have to admit something to you: I’ve been having a hard time with my weight recently as well.”

“Really? How so?” Sarah was probably confused because I am at what most people would consider a normal weight for my height.

Taking a deep breath, I continued, “I just haven’t been feeling too happy about the weight I lost.”

When I first got sick I gained twenty pounds. I felt gross and hated looking in the mirror. I’ve since lost all of the weight, but where I was once uncomfortable with how heavy I looked, I’m now uncomfortable with feeling “frail” and “weak.”

“When do you think this started?” Sarah asked.

“Just this past week,” I said, “seeing my weight on our scale and then again at the doctor’s office and at my treatment—it didn’t feel good. I was embarrassed.”

“Did the nurse say anything to you about your weight loss?

“No, but I don’t feel good about it,” I said.

“Is it just the weight that’s been bothering you?”

“No, I’ve just felt a bit uncomfortable in general,” I said.

“Around others?”

“Yeah, around others.”

“Did you feel uncomfortable at the party last night?”

“Sort of, yes, but mostly just tired,” I said. “Everything becomes an effort and I hate it. I really hate it. It’s been really hard lately to accept and understand why I am in this situation; why I am different than everybody else.”

“Well, Max, this happened to you so suddenly. You were ‘normal’ and then suddenly you weren’t. But I’m glad you’re telling me this.” Sarah replied with a bit of a shocked expression. “I had no idea. You mask it very well.”

“I suppose I do,” I said, feeling the sadness and shame rise up through my body.

After weeks of keeping it all in, I succumbed to an urgency in my heart, letting loose a barrage of emotional encumbrances that had been plaguing me.

“It hasn’t been easy, Sarah,” I said, looking out the window as the small country towns passed us by. “I’ve been struggling and feeling depressed since shortly before we left Naugatuck.” That was over a month ago.

“Yeah,” she said, “I remember you worrying about the strenuous thought of moving and all of the logistics.”

“I don’t think I’ve fully recovered,” I said. “With you at work, I’ve been telling myself that I need to do things—to be active—so I’ll drive you to work some days but the strain that it puts on me prevents me from doing anything else. I’m too exhausted.”

I looked at Sarah, failing to read her thoughts and ashamed of what I was telling her, but I continued on.

“Subsequently, almost every day consists of me doing work for about an hour or so in the morning, and taking a break. Feeling very tired and using the excuse that because of my illness, I should be able to rest, I end up not doing anything productive for the rest of the day.”

“I’m really happy you’re telling me this,” Sarah said. “I had no idea.”

“I am too,” I said, fighting back tears. “I didn’t think anything of it the first couple of days, but eventually I just grew embarrassed and was too afraid to tell you. I don’t want to be this way, but I’ve been in this depressed state and I can’t get out.”

As I spoke, Sarah nodded and even opened her mouth a few times as if to speak, but then held back.

The conversation continued in the same pattern as we arrived at home: me talking, Sarah asking questions, me talking some more, and so on. I have probably mentioned before that I am generally a man of few words—unless it’s about anything regarding science fiction or fantasy—and I found myself expressing a seemingly ever-flowing stream of thoughts and feelings.

“I’m sorry to be talking so much,” I said.

“I actually really appreciate it when you are this open with me, Max.” she responded.

We plopped our weary selves on the bed and laid side by side, looking up at the ceiling. The conversation waned a little. Sarah turned on the air conditioning and came back over to me. As I often do, I began trying to think of practical ways of bettering my situation.

“I just need to start figuring out a way to get out of the house when you have the car. Maybe I could take a bus downtown and then I could do my work at a cafĂ©. I always do better when I’m working on my laptop at a cafe,” I reasoned. “I’ll just have to look into the bus schedules…”

Sarah listened and then carefully said, “I think it’s a really good thing that you want to do something to make things better—and that probably will make you feel better to a degree. But, I think your feelings of apathy are just a byproduct of what’s underneath and what’s really going on inside you. I don’t want you to get back into that mode of doing to make things better. You really need to evaluate your feelings and try to figure out why you feel the way you do and not just how practically you can fix everything.”

I sighed heavily, the corners of my mouth wobbling at my attempts not to get too emotional. I looked up at 
Sarah as she leaned over me, looking at me with such love and care.

“You know, people are so proud of you for how you have handled this situation,” she said and the first tear fell from my eyes. She brushed it away and continued, “But you don’t have to always act like you have everything under control. People will understand—you have gone through and are going through something extremely difficult.”

“I know. Thank you, Sarah.”

We lay on the bed for a little while longer, a few more words spoken but mostly in silence as Sarah continued to comfort me. As she held me I was reminded of the long and demanding months that she took care of me during the worst that Cogan’s Syndrome had to offer. I was happy to remember that through it all, Sarah has been and will be there and despite how I might feel tomorrow, I know that I’m understood and loved.

Monday, April 29, 2013

Wednesday, January 9, 2013

One More Step (Living With Cogan's Syndrome)

November 2nd

I picked up Sarah from work on November 2nd, as we had an appointment with Janet, my audiologist, before leaving for our youth retreat. On days like this, Sarah normally drives the two of us to her workplace, I drive ten minutes down the road to her parent’s house, and then pick her up later when she is done. Like many new habits related with our recently adapted lifestyle, it has become a routine. Sure enough, at the end of the day, Sarah came outside and took over the driver's seat as I switched over to the passenger's side. I was feeling exhausted at this point because, unfortunately, not all had gone according to plan.

“I'm sorry about this morning” she said, leaning over and giving me a kiss. “I didn't mean for you to have to drive that much today.”

Sarah was supposed to bring her guitar on the retreat, but had forgotten it at home. After I dropped her off at work this morning, I drove 25 minutes back to our apartment and then another 20 minutes to her parent's house to wait for her to finish up her work day. This is the furthest and longest I had driven since Cogan's Syndrome first came around.

“That's okay, sweetie,” I said. “It wasn't too bad on the way home. I did get pretty tired driving to your parent's house though. Thankfully, I ended up just taking a long nap before doing any work for my brother. I feel fine now.”

“Okay, good,” Sarah replied and changed the gear from PARK to DRIVE. “So, I think we should ask Janet about her thoughts on getting a hearing aid for your right ear.”

“Good idea.”

“Are you worried about her response?”

“A little,” I said. “I guess I'm nervous that she'll want to wait even longer, considering the fluctuations in hearing that I've experienced—that she'll want to see a my hearing at a steady level for a long period of time.”

“Yeah, I understand. Let's pray about it before we get there.”

We prayed and arrived at the hospital a little while later.


“We wanted to know your thoughts on a hearing aid for my right ear.”

“Well, how consistent has your right ear been?” Janet asked.

Sarah and I explained to Janet that my hearing is decent more often than not. We let her know that I’ve had some hearing in my right ear—enough to be able to hold a conversation and even talk on the phone—for at least four weeks, and that when I do lose hearing, it’s never completely gone, with hearing loss lasting only two to three days.

Janet considered our explanation and concerns. She asked if we knew of a timeframe that my disease might allow my hearing to even out or if it is unknown. We both confirmed that Cogan’s is so rare that there is no clear indicator of when it will fully level off. This could go on for months or years.

“Why don’t I call right now and make an appointment for you over at Dr. Mazen’s office with one of the audiologists,” she said. “They can fit you with a hearing aid there.”

“That sounds great!” I said with a smile.

Sarah and I sat, holding and squeezing each other’s hands in excitement, and sharing eager glances as Janet spoke with Beth, the audiologist from Dr. Mazen’s office. When Janet finished, she grinned and looked right at me.

“Your appointment is all set for next Wednesday.”


November 7th

“How are you feeling right now?” Sarah asked as we drove to our appointment with Beth.

I didn’t have to think long. “Very excited…a little nervous. How about you?”

“The same,” she replied.

“Yeah, it’s amazing to think that I could actually have a hearing aid soon,” I said. “I can only imagine how much it will help.”

“Does it worry you at all that Beth might have the same immediate reaction as Janet—that she may not want to give the ‘okay’ just yet?”

“Of course. That would be very disappointing, but I have a good feeling about this.”

I looked outside at the objects and buildings blurring across my line of vision: colorful, leafy trees, an oversized red metal sculpture, solid grey stone buildings, glass windows. They swirled together, combined by the movement of the car and my vertigo; still, I recognized the city of Hartford passing by. We’ve spent a lot of time here this year.

When Sarah and I arrived at the hospital, we had forgotten exactly where Dr. Mazen’s office was, so we looked at the list of offices on the wall as a guide. I guess it's a good thing we forgot, I thought, it just means that I haven't been here in a while, which is a good thing.

We sat in the waiting room for about fifteen minutes before a woman with shoulder length, dark curly hair opened the door and ushered us into the back. I had met her once before, so I was pretty sure this was Beth. We followed her down a narrow hallway--one I had been down many times on my way for hearing tests--and into her office. The audiologist pointed for me to sit on the opposite side of her desk and for Sarah to have a seat against the wall to my right, just before she took her own chair.

“Hi, I'm Beth,” I was right!

Beth grabbed a cloth from her pocket and wiped away a bit of sweat that had formed on her forehead.

“Hi, I'm Max,” I said, offering a smile.

“And I'm Sarah.” Beth responded with a warm grin while shaking our hands respectively.

“So, tell me about how your hearing is now.”

“Well, my left ear has shown great improvement with the Cochlear Implant. My right ear tends to fluctuate. I've had fairly decent hearing in my right ear for about,” I paused to think about it and looked at Sarah for help, “four, maybe even five weeks. It seems as though I'll have good, well, respectable hearing for a few weeks, and then suddenly my hearing will go away again; thankfully, that only lasts two to three days. But we have noticed that each time my hearing returns, it is at about this level.”

Beth wiped the sweat again and then opened up a manila folder on her desk.

“I was looking at your test results...all of them,” she said, annunciating all to help demonstrate the large quantity of tests I had had, “and I do remember you. I tested you once, and the last time I saw you—I think it was back in...May—your hearing was very poor. I was a little nervous going into today, because if your hearing had been that bad again, there wouldn't be much I could do for you at this point. I would even suggest a cochlear implant for your right ear if that is the case. But, why don't we go do a hearing test now, to see where we're at?”

“Sounds good.”

I followed Beth into the sound booth and sat in the lone chair.

“Do you remember what to do?” she asked, placing tubing in both of my ears and placing a handle in my hand with a button on top.

“I sure do,” I replied.

Beth chuckled and walked out, entering an adjacent room, separated by a large glass window.

“Okay,” she said, speaking through a microphone, “when you hear any beeps, press the button.”


I listened intently, pressing the button multiple times—it seemed that I pressed it many more times than at any of my previous visits.

“Okay, good,” Beth said. “We're all done with that part. Now, I'm going to say some words, and I'd like you to repeat them back to me.”


We spent about two minutes or so playing verbal pong, as she relayed words to me and I bounced them right back to her. When she was all finished, she saved my results on a flash drive and led me back into her office where Sarah was waiting for us.

Before sitting back down, Beth wiped her head again.

“Geez,” she said. “I'm sorry, I feel like a sweaty mess. I just had a baby and I get these crazy hot flashes.”

“Oh, no problem,” Sarah said with a slight laugh. “Congratulations.”

“Thanks,” Beth said, still a little flustered.

Beth plugged in her flash drive and opened up my file. She turned on a large screen that hung from the wall behind her and my results popped up.

“Well,” she said, “You did much better. Your speech recognition is at 100 percent. You understood every word I spoke to you. That's awesome. Last time I saw you, I think you had just lost your hearing again, and it was at about 40 percent. This is a huge improvement.”

“Thank you.”

“Your hearing has definitely gotten better in all respects. If you look at the results behind me, it shows that you can't hear low tones but you can understand many higher pitched sounds. This is quite the opposite from someone who might lose their hearing gradually, in a more traditional way—which is why I really want to think about what hearing aid would work best for your situation.”

Beth began rummaging through drawers: biting her lips, tilting her head, and wiping away sweat as her mind worked. She finally found something.

“Okay. I want you to try this one,” she said. “This is a very popular brand and the company has really done some work on reducing the amount of feedback—the loud squeaking noise that happens when something gets too close the device. I believe that it will also give you enough room, so that if you do lose hearing during a fluctuation, you'll still be able to use it by adjusting it a bit. It's pretty small, but I don't want you to feel like you have something huge weighing your ear down.”

“Have you seen my Cochlear Implant?” I asked with a laugh, removing the device from the left side of my head to show her that it's about three times the size of the hearing aid. “I think I'll be okay.”

“Okay,” Beth grinned. She walked over to me and placed the base behind my ear and the wire and stopper inside. Then she hung a small electronic box around my neck. She walked back to her desk and sat down.

“I'm going to turn it on now, okay?”

“Okay,” I said. “Should I take off the CI so that I can get a feel for just the hearing aid?”


I could feel my heart beating a little faster.

“It should be on. How does that sound?” Beth asked.

I thought about it for a moment. It was much louder and clearer, almost the same level as to where my left ear was at with the device.

“It sounds good. I can hear you much better. You sound very clear.”

My lips quivered and my eyes started to well up with tears. I glanced at Sarah and she knew the emotions I was feeling. She scooted her chair a bit closer, reached out her hand and grabbed mine.

Beth continued to talk: she asked what I was hearing, she told me a little more about the hearing aid and the company, and she explained that she was talking a lot in order for me to get used to the sounds the hearing aid brought.

“Should I put on my Cochlear Implant now?”

“Yeah,” she said. “Why don't you go ahead and do that.”

I put Coco (my implant) back in place and turned it on. Beth began talking again and I did my best to focus on what she was saying, but I was more focused on how amazing my hearing was at the moment. The combination of having hearing devices in both ears was remarkable. Everything was so crisp. I could hear Beth opening up drawers; typing on the keyboard; her voice; Sarah's voice; papers moving. The sounds were clean, pronounced and defined.

The joy I was experiencing in that moment brought me back to the day my Cochlear Implant was first turned on. I was trying not to cry too much—wiping away a few tears, opening my eyes wide, and taking deep breaths. Sarah continued to hold my hand and I know that the two of us were in sync; that in that moment we had one mind: I'm so happy; this is an amazing day.

“So, what do you think?” asked Beth.

“I love it! It's amazing,” I said, shaking my head in a mixture of disbelief and gratefulness.

“I'd like to just try one more,” she said. “I want to give you a couple of options. The reason I didn't have you try this next one first, is because a lot of people say that certain sounds come off as too loud or obnoxious.”

“Yeah, I understand. Let's try it.”

She took the first hearing aid off, and placed the new one on. We went through the same process of me listening to her speak for a bit and then she asked me what I thought, if I could tell a difference.

“Not really,” I said. “This one sounds really good too. If anything, it might sound even a little more clear. I think I might like this one more.”

The three of us discussed payment options and colors of the apparatus and by the time the visit was over, we had ordered my first hearing aid.

“Well, it should only take a few days to get here. We'll give you a call as soon as it is in.”

“Thank you so much, Beth,” Sarah and I both said as she led us to the front desk.

“Oh, you're very welcome. I'll see you soon, once you hearing aid comes in.”

“See you soon.”

Sarah and I walked through the doors and to the elevators with a calm outer disposition, but with electricity through our nerves.

“That was awesome,” I said in the car on our way home.

“I know,” Sarah said. “I can't believe it's actually happening. This is real, Max.”

“I can't believe it either. We're moving forward, baby. I'm so excited!”

(I had a really hard time writing this post. I've been working on it for a few weeks, but due to other work, exhaustion caused by my vertigo, and a couple of days filled with migraines that put me out of commission, I was unable to really get a good feel for it. I am very thankful that I finally finished it and will hopefully have a new one up shortly. Thanks for sticking with me.)