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.


  1. Great post, doll. I loved it. Your writing gets better and better!

  2. Wow, whoever you are, you are too kind.

  3. I think that perhaps they cut in that area so it would hid the scar better (rather than pealing back your ear). Quite often if possible modern surgeons use the existing creases in our skin to hid scars.

  4. I had an eardrum transplant, as a child, and later a tympanoplasty, as an adult. For both, I was told that the doctor did actually fold my ear forward on the side of my face while doing the the surgery. Whoa! I still get queasy thinking about it if I look at the scar behind my ear, although it's not very noticeable or ugly. Hope your recovery is going well. I know there will be many transitions as the implant is activated and adjusted. Often the journey of discovery is very uncomfortable and frustrating, but I pray that joy overshadows every step for you!