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.

Friday, November 2, 2012

If I Were Able... (Living With Cogan's Syndrome)

October 1st-7th:

“I feel like I’m letting you down,” I said, unable to make eye contact.

“Max,” Sarah said, grabbing my hands and forcing me to look at her. “You are not letting me down. I only care about taking care of you.”

“I know. I just wish it were the other way around.”

One year ago, I was in engrossed in my first semester of graduate school with a focus on early childhood education. During this time, I also worked for a daycare as a teacher’s aide which I had been doing since 2009. At the end of the semester, after much consideration, consultation with Sarah, and prayer, I decided that graduate school was not the right path for me at the time. I finished the semester in hopes of finding full-time work and shortly thereafter, I grew ill.

In the meantime, Sarah had been working full-time for two-and-a-half years, supporting us while I was in school. It has always been a desire of mine to be able to provide for my family. Sarah is my family--we have no children. It’s just the two of us, but as a man, there is an inherent aspiration that I’ve always recognized. Having witnessed the time and effort that my own father had put into this aspect of life, I knew that, when blessed with a family of my own, I’d do the same. Graduate school seemed like the natural progression after I received my Bachelor’s degree. I wanted to be able to get the best job I could after finishing college. I believed that the pursuit of a Master’s degree would strengthen my chances, allowing Sarah to focus on her creative endeavors.

Unfortunately, plans don’t always go the way we would want them to. Sometimes life can be a bit tricky—in fact, it forced me to reevaluate my goals for the foreseeable future. When Cogan’s Syndrome first let loose, I was unaware of how long I’d be out of commission and unable to work. Eight months later, I am still out of work due to vertigo and hearing problems and even if I believe at some point that I’ll be fit to venture out and work again, I currently have no job to return to. Sometimes I feel like screaming out loud. I want to shout and dramatically knock things off shelves, flip tables and punch holes in walls—it feels as though one of the reasons I was created, part of my very being, was ripped out of me; it’s emasculating.

I’ve had to deal with physical and mental trauma due to my disease, but I’ve also had to consider  the fact that I haven’t been able to help with our finances.  In my opinion, it’s what I should be doing and the fact that I haven’t been able to infuriates me. Sarah has been forced to continue full-time work while I’ve been at home. I cannot express how thankful I am to her for her hard work and endurance. We both understand that she is blessed to be employed and that without her benefits, my health would be in question--perhaps unable to be treated with detrimental side-effects--however, I long to change our circumstances, allowing Sarah more possibilities. I wish that she could enjoy life and focus on her gifts. I want her to be able to sing and write music; to spend time doing art and writing; instead, she is cooped up in a cubicle all day long, doing  work that she is content yet indifferent with, and unable to fully take advantage of her passions.

In our current situation, Sarah and I have decided that I should pursue writing; that I should spend all of my time and what little energy I have on becoming a freelance writer. As much as I love writing and am excited about the possibility of making a living from doing so, I still wish our roles were reversed. I would much rather that Sarah be able to follow her ambitions. In the meantime, I’ll write, and I’ll enjoy it, in hopes that one day, I’ll feel completely useful again.