Thursday, October 18, 2012

Reiki (Living With Cogan's Syndrome)

September 24th:

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

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

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

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

She did.

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

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

I stared at her for a moment—totally lost.

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

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

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

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

Cindy looked at me, puzzled.

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

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

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

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

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

“I’m sorry?”

She repeated herself again.

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

“Okay. Not a problem,” Cindy said.

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

“Bye. Thanks anyway.”

She left the room and Sarah looked at me.

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

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

                                                                 * * * * *

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

“Hello,” she said. “Are you Max?”

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

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

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

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

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

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

“Okay,” I said warily.

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

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

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

This didn’t shake Joan. She was dedicated.

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

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

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

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

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

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

Wednesday, October 17, 2012

Love Notes (Living With Cogan's Syndrome)

September 7th – 14th:

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

“Thank you,” I replied with a smile.

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

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

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

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

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

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

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

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

                                                                      * * * * *

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

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

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

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

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

“Will you marry me?” I asked.

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

Well, I wasn’t expecting that.

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

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

                                                                     * * * * *

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

                                                          (Reenactment of the proposal)

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

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

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

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

                                                                     * * * * *

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

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

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

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

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

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

“I think so.”

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

Friday, October 5, 2012

I Hear You (Living With Cogan's Syndrome)


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

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

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

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

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

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

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

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

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

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

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

                                                       (Making life a little easier each day)