Tuesday, June 12, 2012

Realization (Living With Cogan's Syndrome)

April 22nd:

I woke up feeling miserable today. Not sick—although my head was pounding from a headache that began last night—but rather depressed about my situation. Sure, some days are harder than others. There are days in which I feel discouraged and frustrated at certain aspects of my disease that render me useless; however, this was different. I think it probably started with the 30 Hour Famine that the youth group was involved in this weekend.

Sarah and I have been youth group leaders at our church for two years now. This past year, we had the privilege of teaching the ninth grade. Recently, the teens have been raising money to help world hunger through the organization World Vision. On Friday night, they met at South Church in Hartford, CT along with the youth from that church, and went on to fast Friday into Saturday evening. Sarah and I went and tried to be as involved as possible.

As leaders, we were assigned a group to head up, overseeing activities, games and discussion. Sarah and I immediately panicked. I get very nervous in situations like this now and usually all of the responsibility tends to fall on Sarah. Sarah spoke with one of the other leaders and due to the fact that not all of the teens who signed up for the night were actually there, he let us off the hook. So instead, Sarah participated a little bit while I sat around and watched.

This is pointless, I thought. What am I even doing here?

This is what I had felt numerous times throughout the duration of the event, though I still wasn't positive about what those feelings truly meant.

See, I love those kids. Working with the youth group has been one of the most rewarding experiences of my life. I've developed fantastic, meaningful relationships with a number of the students, but now, I can't even hold conversations with more than one at a time. Having normal conversations with teens can be relatively cumbersome when you can’t hear what they are saying.

Last night, after a really long day of minimal interaction at the event, I went to sleep feeling disheartened. I couldn't place my finger on it at first and even today—feeling upset and tired of the limitations I've had to deal with—I still didn't understand what had sparked those feelings until I began to write this entry.

I went to church with Sarah, exhausted, but hoping to procure some semblance of normalcy. I tried to listen to the sermon through a headset, but the pastor just sounded like a gurgled mess. How long will I have to deal with this? I wondered. I don't know if I can take it anymore. I finally told Sarah how I was feeling. At my second Remicade treatment, Mia handed me a slip of paper with the name, email address, and Facebook support group created by her patient who also has Cogan’s Syndrome. Sarah suggested that I get in touch with the woman. She thought it might help me to begin connecting with others who are going through the same ordeal. I told her I would—and I will—as soon as I finish writing this entry.

Our friend, Cristina started dating a guy named Doug a couple of months ago. I haven’t exactly had much of a chance to get to know him, so after church, Sarah and I went out to brunch with Cristina and Doug. I really wanted to get to know Doug better. I wanted to be able to listen, talk, and laugh; but all I could do was sit and wait for Sarah to explain finished conversations or the end of jokes to me. I felt defeated. I believe that this is the first person that I have met who didn’t know me before Cogan’s. Meeting a new person, trying to learn about them and feel comfortable around them while having this disease is not an easy task.

We went over to my in-laws afterward, and I began to write today's entry. Immediately, I realized what triggered this extended state of depression: It was the 30 Hour Famine. Well, not the event itself, but what being at the event allowed me to see. I have been keeping my emotions bottled up for months now. I haven't talked spoken in detail about how this all affects me, because I don't want to think about it. All day, every day, I read and sometimes write. I use these two hobbies of mine as a means of retreating from my problem. Having spent almost twelve hours with the teenagers, and not being able to be a part of the activities opened my eyes.

Today, Sarah started drafting up a document on a small lined sheet of paper titled, “Max’s Can-Do List.” I can play scrabble; play cards; hold one on one conversations; play mini-golf (maybe); go on short walks; read; write; whistle; and snap my fingers. It’s a short list, with a few impractical additions, but it’s a start.

I hate how debilitating Cogan's Syndrome has been for me. I hate that I can't drive; that I can't work and see the kids at the daycare; that I can't talk to my friends in a group setting; that I can't be a mentor on a Sunday evening at youth group; that I can't hear my wife sing—the list could go on. But I don't want all of this to destroy me. There are things that I can do. I think it’s time for a change.


  1. Max, thank you so much for writing and sharing the many layers of this journey. I love the "Can Do List" idea. I went to a healing service held at my church last Saturday, then for healing prayer on Sunday after Communion. I go for healing prayer every Sunday for my hearing. Now I carry you with me in my heart. I know God is surrounding you with friends like the Four Friends who brought the paralytic to Jesus through by making a hole in the roof.

  2. One more for the can do list: attract back rubs, if desired. I do it all the time for other people anyway, and I'll even make a house call if you get desperate.

  3. Any time you want to get together to do anything on your "can do" list just text me. We could also watch a movie on the big screen with subtitles on. I can even mute the sound and we can "share" your experience together. LOVE YOU Bro and am here to help any way I can.