Thursday, June 7, 2012

Relearn, Refocus, Repeat (Living With Cogan's Syndrome)


April 2nd—April 5th:

What a busy week! I haven’t been working, but with the number of appointments I’ve had, it feels like a full-time job! Okay, at least a part-time job. I had four this week and I am thankful that they are through. I am exhausted, but alas, they were all important facets of my recovery process.

Rather than talk about all of my appointments in detail—rehashing similar news as to what I already know—I’m going put my primary focus on my first day of physical therapy.

Just to give a brief overview of the week: on Monday I had my second Remicade infusion treatment with Caitlin; On Tuesday I had a follow-up appointment with Dr. Mazen which included yet another hearing test—nothing has really changed in that arena; Wednesday, I had my first physical therapy appointment; today I had another follow-up with Dr. Russo.

I was originally supposed to start physical therapy a week ago with a woman who I had briefly met when I had my first appointment with Dr. Mazen; instead, I had to begin the pre-treatment of Prednisone administered through an IV. Doing both in one day seemed out of the question. I couldn’t imagine spending hours in the hospital—needle in arm—having medicine pumped through my veins, and then having to learn how to walk again right after. It was an unlikely scenario.

So it had to be today. Sarah and I made it with a few minutes to spare—having narrowly passed through a construction site on the highway (along with an accident due to the traffic). We sat in the waiting room, Sarah intensely reading her copy of Mockingjay by Suzanne Collins while I chose a library borrowed edition of Before They Are Hanged by Joe Abercrombie (I know, fantasy novels have quite illustrious titles). I frequently gazed up from my book as various patients were ushered through the office doors when physicians called their names. I wonder when my turn will come, I thought. Will she be as kind and patient as Dr. Mazen and Dr. Russo have been thus far? Will she be as helpful and as reassuring? I felt nervous, since my balance issues had not yet been squarely addressed.

The door opened and a tall, thin, woman with shoulder length sand-colored hair walked through. She wasn't the physical therapist who I'd met two weeks ago so I wasn't positive it was my turn. She smiled at me and asked me to come through. Well, at least I suspect she did, because when I got up to follow her, she didn't ask me to sit back down.

“Hi, I'm Rose.”

“I'm sorry?” I leaned in close, examining the movement of her lips.

“I'm Rose,” she smiled, “Do you always use the cane?” She pointed to the cane that Mia had ordered for me.

“I’ve only been using it for about a week. The nurse at the hospital gave it to me during my treatment. She said it would help me feel more secure while walking. It's helped.”

Rose grinned at me again and nodded in response. I was already starting to feel comfortable with her. We were now standing in an open room with exercise equipment and patients working on an assortment of muscle groups. She stretched out her hand and asked for the cane. I handed it to her. Rose asked me to walk from one end of the room in a straight line and back to her. Here we go, I thought. Right down to business. I moved, slowly but surely with heavy breathing. I stretched my arms out to the side as my legs began to wobble, trying to keep my balance—trying to keep from falling over. I made it to the other side and turned, feeling as though my body was about to collapse, but doing my best to look confident. I walked back to her.

“Good job,” she said.

“Thank you.”

Rose pointed to a line of tape on the floor about ten feet long. “I want you to try to walk down this line, one foot in front of the other, as if you were walking on a balance beam.”

I followed her directions. This was harder than the first task. I focused intently on the narrow path in front of me. As of late, I had been relying on the cane as a guide. Sure, I had still looked down at my steps before—making an effort to walk in a straight line—but I hadn't been worried about others watching me. It was unnerving to know that now all of the attention was on me, even if it was only from one person. What would normally only take me a few seconds to complete felt like minutes. I was beginning to sweat. This was no ordinary perspiration either. It came on fast. It was profuse. Like someone had snuck up behind me and thrown a bucket of water right at my armpits.

When I finished my assignment, I placed my arms at my sides, trying my best to hide the dampness underneath. Rose brought me into a smaller room. She taught me how to do an array of exercises, explaining each one in great detail. When she was done demonstrating, she had me practice the exercises and then printed them up for me to bring home to use.

 “You did a great job walking in a straight line,” she assured me. “Your balance isn't actually that bad, really. These exercises are essentially slightly harder than ones that I would normally give my patients. They're going to help you retrain yourself to focus. Within a few days, you should already start to notice a difference and then you can progress to more difficult exercises. I don't mind you using your cane in public, but at home you should really get used to moving around without it. The more practice you get, the faster your eyes will re-train themselves.”

I thanked her for her help and walked out to meet Sarah. We drove out and had a brief exchange with the elderly, friendly ticket guy in the garage.

Later on that day, I tried working on my exercises while Sarah was working. They were difficult and aggravating. It's interesting how much I’ve taken for granted. When I lost my hearing, I thought about all of the things I would never hear the same again: music, voices, laughter. Even though I have been dizzy for just as long, I haven't really thought about it much, other than that it's a pain. Sure, I couldn’t even watch television because the motion was too much to handle, but I just chose to read instead. Now, though, trying to learn how to walk in a straight line, closing my eyes and attempting to stand still in one place, focusing on a still object while I move my head from side to side—I  can't help but miss being “normal.” For a brief moment, I wanted to give up; and it was only my first day. Why does it have to be so hard to stand still? Why can't I move forward without feeling as though I'll fall on my face? Just move. Just move. It was odd telling my body to do every day movements and having it ignore me. I forced myself to continue. I chose to believe that this had to work. It had to.

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