Friday, November 16, 2012
You Don't Own Me, Cogan's Syndrome
October 12th – November 4th:
Unable to remain as active as I once was before the onset of Cogan’s Syndrome, Sarah and I decided to make a list of things that I could still do a few months ago. This was in an effort to remain positive and not dwell on the negatives. Many of the activities on the initial “can do” list still ring true today, but I’ve continued to add to them, without actually taking the pen to paper. These additions may seem small or commonplace to the average person, but to me, normal goings on have become big wins.
Reading and collecting comics has been a passion of mine since I was a young child, having gone to the local comic book store every Sunday with my father to spend my week's allowance on cheap back-issues. Five years ago, my friend Matt and I decided that we would take our love for everything related with comic-books and science fiction to the New York Comic Convention in Manhattan. Next to San Diego Comic Con (which just so happens to be the largest convention of its type in the world), NYCC is almost a celestial experience for nerds like me. The event is an amalgamation of activities that include celebrity signings and panels, meetings with writers and artists, screenings of movies and television shows, video and table-top gaming, and Cosplay—people dressing up as their favorite characters and feeling famous for the day as random fans ask to take pictures with them.
Matt and I have made it a tradition and have gone every year since, bringing various friends along with us each time. The past three years, Sarah has come with us as well. This year, despite my disease (or possibly in spite of), Sarah and I purchased our tickets in May in hopes that I would be well enough to go by October. Well, we went, and though it was a tiring weekend—being crammed into a convention center with barely any room to maneuver as tens of thousands of people inched their way to their favorite convention destinations—I had an amazing time. I did not let my illness control me.
I walked around, cane in hand, for seven hours with my wife and our friends, purchasing comics and viewing all of the sites. We sat, packed in with 6,000 people, at a theater all day on Saturday and watched celebrities promote their movies and shows. This was a practical and enjoyable way for me to relax after the long, strenuous day prior. Later, our group went out into the city and spent time with friends from Connecticut and New York.
It was a fantastic weekend that I look forward to each year and I felt blessed to be able to continue the tradition without Cogan's Syndrome holding me back.
Two weeks later, I ventured into the depths of the woodland of Vermont with a group of guys, in retreat from the busyness of everyday life. This is an annual event dubbed “Man Weekend” that began when I first moved to Connecticut over three years ago. Unfortunately, last year, I was unable to attend, as my vertigo and hearing were at their worst. I was not going to miss the adventure this time around.
Banded together—nine men strong—we roughed it for three days: building fires with sticks, harpooning fish and snaring rabbits to feed on, having nothing but the clothes on our backs for warmth against the cool fall winds. Admittedly, this may be a slight exaggeration, as we actually stayed in a heated home with three bedrooms, a fireplace, and pre-purchased food. Nonetheless, I spent quite a bit of time in engaging conversation with both friends and those who I had just met. I was in a safe place and was returning to a small part of my old life that had been so suddenly taken away. This “Man Weekend” is always a great time to bond with guys my own age and this year especially, it was another way for me to prove that Cogan's Syndrome does not own or define me.
There were a few activities that my vertigo simply prevented me from taking part in. I was unable to go on the six mile hike up and around a mountain that two-thirds of the guys successfully endured. Truthfully, I probably wouldn’t have been able to get through that prior to Cogan’s. I did, however, walk down a steep hill—holding on to the shoulders of a friend—to a small waterfall with the whole party. On the way back up, a friend of mine stood behind me, hands raised for assurance, while I latched onto another friend as my main support through the treacherous terrain. I couldn't do everything on my own, and I actually needed to use the cane for most of the weekend, but I was there, overcoming, and setting my worries aside.
One aspect of my life that has changed drastically since Cogan's Syndrome first appeared is my work with the youth group at our church. I have spoken about this in the past—how I am passionate about mentoring and leading the teens, but have been unable to hear them or participate in any of their events. Thankfully, since my surgery for a left unilateral cochlear implant, along with the partial improvement of hearing in my right ear, spending time with the youth group has become much easier. I can speak with them, understanding most of their delivered mumbles now. They have also gotten used to the hardships of my disease as well, doing their best to accommodate by making eye contact and talking more clearly.
On the first weekend of November, Sarah and I led our first retreat with the tenth grade—the ninth grade came along as well since they are a small group. We went back to the house in Vermont that I had been just one week prior (as a side note, let me tell you that I have gone away every single weekend since the beginning of October and I am doing my very best to keep up mentally and physically). We led the students in a study, offered free time, and Sarah led on her guitar in song. It was a successful weekend by all standards, but what I am thankful for the most was the simple fact that I could participate. I could act like myself again around the teens and it was good. I felt comfortable and purposeful: as if I was doing something important again. I haven't experienced that in a very long time.
My brother, Gideon, recently hired me to maintain the social media aspect of his real estate business: posting articles, writing articles, data entry, and bringing in new viewership to their main site. I’ve started out with just ten hours a week, but for me, this is more than enough. I was just talking about not working and now I am so thankful to be doing so again. The idea that I am actually contributing to our income and doing something that I love fills me with satisfaction and a sense of significance.
Cogan's Syndrome does not dictate my decisions. I have not and will not allow it to remove the joys of this life. Every day, I take another step forward, trying my best not to look back.. I know that this is a vital part of my journey, and while the future seems hazy, I trust that one day it will be clear as day.