Thursday, August 30, 2012

A Tale of Two Brothers...Well, Three (Living With Cogan's Syndrome)

July 6th – 8th:

I have two older brothers: Casey is ten years older than me and lives in California with his family. Gideon is six years older than me and lives with his family in Michigan. I've always been very close with my brothers, even when we haven't contacted each other on a regular basis. No matter what, I still consider them my best friends. That's why Sarah and I did our best to make it to New Paltz this past weekend—Gideon and his four year-old daughter were visiting.

I look up to my brothers. As a kid, I listened to the same music that they were into: Smashing Pumpkins, the Beastie Boys, and Alice in Chains. I would dress my skeletal body in baggy clothes like them, decked out in JNCO Jeans and their hand-me-down, extra-large t-shirts.

They taught me how to play “doorknob.” When an individual...passes gas...the said individual must say the word “safety” before another person calls out “doorknob.” If the passer of gas fails to exclaim “safety” before “doorknob” is bellowed, anyone near the flatulater is given ample opportunity to punch the releaser of gas until he/she has touched a doorknob. Needless to say, it would take me quite some time to reach a doorknob and plenty of bruises enjoyed their stay on my body as age and numbers almost always won out. But it didn't matter; that's what brothers do.

We would take long car trips with my parents to Florida to visit my grandparents. Five people in a small sedan, squeezed tightly together for two whole days. I, of course, would have to sit in the back of the car in the middle seat, while my brothers sat on opposite sides of me. They would shove me back and forth for hours at a time. I hated it but I secretly loved the attention.

When I was in middle school and a 10th grader bullied me on the bus, Gideon—a senior in high school at the time—made sure that I was never picked on again. He also let me hang out with him and his friends (which I don't believe is very common for an older brother to do). Casey was a person to cry with when two of my friends passed away. My brothers have always looked out for my best interests and they gave me one heck of an awesome “Best Men” speech in which they called me an “albino sasquatch.” They are honest with me and can easily joke with me.

Sarah and I had had a very busy week. I was still recovering a little from surgery, even though my implant was activated a week ago. I hadn't returned to physical therapy yet, so my balance was still giving me problems and I was overly tired. Sarah worked on Monday, then on Tuesday we drove to Rhode Island to stay with her sister, Kimberly, and her husband, Lukas, at their rented beach house until Thursday. While there, Sarah and her father worked on their laptops at a local Panera Bread. We returned Thursday night and then Sarah had to work all day Friday before we were able to make the trip to New Paltz. On top of all that, because I can't drive long distance, Sarah did all of the driving throughout the week. We talked about it and decided that despite our tired minds and bodies, we would persevere and make the trip to see my parents, my brother, and niece. We hadn't seen Gideon since Thanksgiving—he had yet to see me in person since all of my troubles began.

We arrived around 7:30 pm and were greeted by the family in my parent's kitchen. Sarah and I hugged Gideon and his daughter.

“It's so good to see you,” Gideon said as he let go of his embrace and looked me in the eyes.

“It's really good to see you too,” I said. “We've missed you.”

We all sat around the table and talked about Gideon's job, his wife (who couldn't make it due to being eight months pregnant), and my implant.

“I think of you like a cyborg,” my mom said. “It's cool.”

“Yeah, like the Borg?” I asked with a smile.

“Yeah,” she said and then went on to tell us about one of the books she'd been reading that related to the matter. My mom is a children's librarian. She is constantly bringing home new teen and young adult books to read before releasing them into the library system. She always tells us about the books as well, because many of them have some sort of science fiction or fantasy element involved and she knows that I am a sucker for those particular genres.

I left to go to the bathroom and while I was gone Gideon spoke.

“ it okay to joke about all of this?”

“Oh yeah,” Sarah said. “We need to be able to joke about it; otherwise we'll just be depressed all of the time. There is, of course, a line that shouldn’t be crossed as far as joking around versus making fun is concerned. We know people who have crossed that line. We truthfully don’t think they even meant to do it; they just don’t know how to react to the situation. Anyway, yes, we can joke about it. It keeps us sane.”

She told me about that conversation later. I think that because Gideon hadn't seen me since before the onset of Cogan's, he was unsure of how sensitive the subject matter would be. As the weekend progressed, we would come to find this out even more so.

On Saturday, after spending the morning with my parents, Gideon and his daughter, Sarah, and I spent the rest of the day together. We were originally planning on going to the pool for a bit but unfortunately, it began to rain. This brought our niece to tears.

“Oh, come here, sweetie,” Gideon said, lifting her up into his arms. “I know you're sad. We'll still go out with Aunt Sarah and Uncle Max and do something fun. And if it stops raining, we'll go swimming. Okay?”

“Okay,” she said as she wiped her eyes dry.

The four of us drove out to town and decided to go to the indoor rock climbing gym. Sarah and I opted out from actually participating—I'm not sure how well I would have managed. My brother asked Sarah why we didn’t want to try and she mentioned my vertigo. He looked like he felt guilty and said, “I’m sorry. I didn’t even think of that.” She assured him it was really no problem and we were there to spend time with them above everything.

Gideon and his daughter were naturals. Apparently, Gideon had been on a rock climbing team in high school and was now swinging from rock to rock, wall to wall. The woman working behind the front desk gave our niece a stuffed dog to hold on to, as her nerves started to kick in at first. Happy with her new side-kick, she tried climbing up before the harness was even attached. She got scared and didn't want to continue, so Gideon and the man working there tied the doggy to the harness and let it climb the wall first. It was pretty adorable to watch our niece's expression change from frightened to intrigued and excited. They hooked her up with the dog at her side, and she made her way up the wall with ease. If we had chosen to joined them, I’m sure she probably would have put us to shame.

It had stopped raining when the two of them were all finished, so we drove down the road to the town pool. We all started out in kiddy pool, which in retrospect, I should have remained in. Sarah and I went over to the five foot deep water and climbed in. Immediately, I closed my eyes and swam under water, thinking nothing of my current state. This was a mistake. Somehow, I hit my head on the side of the wall, which didn't hurt, but it threw me off. I tried to swim up—back above water—but I kept hitting the side. I couldn't figure out how to make to the top. I began to panic and was starting to lose my breath when I finally—by the grace of God—burst through into open air. Gasping for breath and finding the side wall, I stayed there for a moment, collecting myself.

“Are you okay?” Sarah shouted from about 20 feet away.

“Yeah...” I breathed heavily. “I'm okay. Just had a little scare, that's all.”

She swam over to me and hugged me.

“What happened?” She asked.

I told her and then we both decided that I better save swimming under water for another day.

I do that every so often: forget about my new disability and try to do things the way I used to do them. I’m not sure how to stop that since I think it’s just instinct.

After we all got out of the pool and put our regular clothes back on, we watched out niece for a few minutes on the playground while Gideon made a phone call. As we played with her and chased her around—Sarah doing most of the chasing—I realized something: this was much harder than I expected. Five minutes later, I was physically beat. Dizzy and exhausted, I sat down and let Sarah take over. I thought about my job, which I haven't been to in over four months and wondered when or if I would ever be able to work with the kids again. It was a strange thing to think about. Working with children has been my life for the past ten years. I want to be able to run again. I want to be able to play with my own children and chase them around the yard one day. Please, God, don't let this vertigo control my life forever.

Finally, we went out to eat for a late lunch. Sarah got up to use the restroom and while seated, Gideon and I had a heartfelt conversation. One that I think was a very longtime coming.

“I have to tell you,” he said, “last night, when everyone went to bed, I stayed up until about two a.m. reading your blog. When you began writing it, I read the first couple of posts, but then I got pretty wrapped up in my own world and hadn't gone back to it.”

“Oh yeah,” I said, understanding and not upset.

“Yeah. I have to apologize. I've known what you've been going through. You've been on my mind. But I don't think I really knew the full extent of it. Reading the post about us talking on the phone really got to me. You said it made your day, and that's great, but I feel like I should have done more.”

“Oh, Gideon, it's okay, really.”

“No. It's not,” he shook his head. “I remember reading the post awhile back about how your doctor told you that you would ‘get your life back.’ I was at work and I just broke down. So, my thoughts have been with you, but I just get distracted with my everyday life.”

At this point, Sarah returned, but we continued to talk.

“It's okay, Gideon. I understand,” I said. “It's been hard but I know that you love me and care for me. I also know that you're having your second child soon and things are very busy for you.”

“Well, I just want you to know that I am glad you are doing better and I am happy that when you can talk on the phone to me, that's enough; but I also want you to know—and I'm sure you wouldn't feel comfortable asking—but if you need anything...anything...”

“Thanks. We really appreciate that,” I said.

“We'll just leave it at that,” he said. “I love you.”

“I love you too.”

Same shirt, different guy


On our way back to Connecticut today, Sarah and I talked about our time with Gideon.

“It was really nice to see your family this weekend,” she said. “We have such a cute niece.”

“I know. She was a lot of fun this weekend. And she's amazing at rock climbing!”

“I know!”

“It was awesome spending time with Gideon. I think that, personally, I had the best time with him this weekend than I have in years,” I said.

“Oh, I know. Me too. It was just so easy,” Sarah said.

“Yeah, and though I wasn't upset with him for not reading my blog and not keeping in close contact with me, I was very happy that he talked to us about it and apologized. I think that seeing me this weekend, in person, was eye-opening for him.”

Gideon and I haven't stayed in contact much through my illness-driven months, but I am glad that we care enough about one another to make a change. I felt that our open conversation brought us to a new level of understanding and I'm thankful for that.

1 comment:

  1. I really like this post about you and your brothers and your relationship with them, particularly with Gideon. I love the picture! Very heartfelt! Love the story about your niece and rock climbing also!! So cute!