Monday, May 21, 2012

It's Always Someone Else Until It's You (Living With Cogan's Syndrome)


March 15th:

It’s not as though I thought I was invincible growing up—that I could don a cape and tights, fight crime and never get hurt. In fact, I got hurt quite a bit. I’ve had numerous broken bones and other injuries that helped me to understand my own mortality; however, I never expected to have a serious health issue that would render me debilitated—at least, I didn’t think that anything could happen to me at such a young age.

Even after experiencing the death of a friend in high school and then a close friend two years later, the idea that anything serious could ever happen to me was pushed to the far reaches of my mind. I’m sure that whatever is going on inside of me is not fatal, but it doesn’t change the fact that it’s hard to deal with. I’m not having an easy time coping with this. I tell everyone all of the time that God is good and He is getting me through this—and I know that that is true—but I don’t feel it every day. And then there’s Sarah. She’s been amazing throughout the entirety of my
illness; but I’m sure that she is struggling just as I am; unsure of when to tell someone the truth: this all sucks; it’s discouraging; it’s difficult.

It’s no fun having to see a doctor practically every day. It’s no fun being the subject of test after test. None of it is fun. This is my new life, though. Today was no different.

My first appointment was an MRI. I had never had one before, but I had imagined what it would be like based on what I have seen in movies and television. I was right for the most part, although I didn’t realize that it would be so loud. I guess the good thing about not being able to hear anything is that it wasn’t too loud for me—granted, I had head phones on to block out most of the noise, so who really knows?

As I lay back, and the bed began to move deep into the cylindrical machine, I thought about what the lady issuing the test had said to me, “Remain as still as possible. This will take about 45 minutes,” and my mind shifted all over the place. How the heck am I supposed to not move for 45 minutes? Maybe I’ll fall asleep. What if I have to go to the bathroom—I did drink a lot of water before. What if I have to scratch my nose, or my leg? I won’t be able to reach my leg, anyway. I wonder if whatever machine she is looking at to process my results, has the capability to read my thoughts? Can she read my thoughts? Don’t think. Don’t think. Don’t think of anything stupid. Shut up, Max. Go to sleep.

When the bed began to move out, I woke up. Thank you, God, that that is over. Wait, what if she read my thoughts while I was asleep? 

I met Sarah in the hallway and she hooked arms with me, helping me outside.

“How did it go?” she asked.

“It was fine,” I said. “I fell asleep through most of it. She had me wear a set of headphones to block out the noise of the machine.”

“Yeah, I could hear it down the hall!”

“Wow, it was that loud, huh?”

“Yeah. So, how do you feel?” she asked and placed her hand in mine as we walked to the car.

“To be honest, kind of nervous,” I said, opening the passenger side door to our car and getting in. “I mean, I’m sure the results will come back negative, but even though it’s a slim chance, it’s still a chance, you know?”

“Yeah, I know. I feel the same way. I have faith that everything will be fine, though.”

I sat still, waiting for the right words to say. She is so strong, I thought. I don’t know if I could do any of this without her.

“Me too. I love you,” I looked at her and smiled.

“I love you too, Max.”

“Well, ready for my next appointment?”

We met with Dr. Mazen after a series of hearing tests with his audiologist. He is a thin, bald man in his forties with bushy eyebrows. He shook my hand and then Sarah’s and like the plethora of doctors that I had seen already, he had me explain what happened.

“Wow, I’m sorry you have to go through this,” he said. “I’m going to try something. I’m going to place my hands on either side of your head and I’m going to twist it from side to side. I want you to try and focus on my nose with your eyes.”

“I’m sorry. Can you say that again?” asked.

He looked me directly in the eyes, explained again, this time using hand motions to give me a clear picture.

“Okay.” I said.

He shook my head fast. I couldn’t focus on his nose at all.

“Did you notice that?” he asked with full annunciation.

“Notice what?” I asked.

“Your eyes were all over the place.”

“I’m sorry.” I shook my head, not understanding what he said and still dizzy from my head being passed about between two hands like a basketball. He repeated himself.

“Yes. That, I did notice.” I glanced over at Sarah and she was smiling.

“Are you still on Prednisone?”

“Yes,” I said.

“Good. Well, I have to tell you. Your balance will never be the same again,” he said. “I want you to do some physical therapy. It will really help you learn to adjust to your balance issue. You’ll learn to refocus and you’ll get used to walking around on your own again without any help.”

I nodded, shifting my gaze to Sarah who was taking it all in. Dr. Mazen continued, “As far as your hearing goes, I want you to make another appointment with me for two weeks from now, so that we can see if you are a candidate for the cochlear implant.”

I shook my head, letting him know that I wasn’t fully able to grasp what he had just said. Once he repeated it and I nodded in agreement he continued on.

“I also want you to set up an appointment with Dr. Russo. He’s an eye disease specialist, and there is a chance he will be able to diagnose you. He’ll probably want to have you get some blood work done as well.”

I couldn’t understand everything he was saying, so I just nodded and resigned myself to the idea of asking Sarah after. We thanked him, and left.

On our way home, we talked about the situation.

“Busy day, huh?” Sarah said.

“Tell me about it. I just want to go home, get in my pajamas and sleep.”

“What do you think of Dr. Mazen?”

“He seemed really nice,” I said.” I liked that he was looking at me when he was speaking and would repeat himself without hesitation if I needed him to.

“Yeah, I really like him. It seems like we are finally getting to see some great doctors.” She said as she drove onto the highway.

“Yeah, and I love that they keep referring us to other doctors—you know, that they are all working together. It’s reassuring.”

“Absolutely. How do you feel about everything he said?”

I paused. “Good, I guess. I mean, it was a small step forward, and that’s good I suppose. I just wish were easier. We didn’t really learn anything new today. Just more uncertainty.”

“I know. Hopefully Dr. Russo will be able to diagnose you.”

“Yeah, hopefully.” God, I hope so.

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