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.)

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.