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.


  1. This is beautiful. I appreciate your vulnerability and willingness to share. You have to believe that God has designed this out of His love for the both of you. In His sovereign way, He sees this as better than it being any other way for you two right now. [I had to remind myself of that when my mom died this year] It will all unfold on the other side of eternity, and we'll all say "Ohhhhhhhhhhhh."

  2. It's interesting how we only see the big picture after the fact. A lot of inspiring stories come from the unexpected, and in my eyes, I can see how God's plan can certainly unfold when you put all your energy, like you mention, into something that perhaps you wouldn't if you didn't have Cogan's Syndrome. God's ways are mysterious, and no man can understand them. God knew what he was doing when he allowed this to happen to your life, and not to Sarah. Can you imagine if Sarah had Cogan's Syndrome and not you? Wouldn't you like to actually be in your shoes rather than your dear wife? God knows what you can handle, and reading from your blogs, it seems like you have more courage each day. I am excited to see where your career goes, and perhaps even happy that you had to go through this to become the person you will become. Some of the biggest inventions, biggest successes come from the most unexpected events, and perhaps this is your case. I love that our lives are under God's control, and that he brings the most amazing things out of nothing. I am excited to see what you come up with as a result of God's plan. Keep it up!!!

  3. Hi Max,

    I was diagnosed with Cogan's last month after having years of pain in my eyes. I had surgery a couple weeks ago and now have little to no vision in one eye. I am torn...was the pain better than no vision? I am still weighing in on that.

    I also have MS, 15 years of it and I too, do not want the frailness of my health to define me.
    Instead, Faith ~ The work of the Cross of Jesus Christ defines me! Praise God, right? Illness has changed my life for the better. I now evaluate everything I do with carefulness. I spend many hours studying, reading (mostly listening) to the Bible and the many wonderful teachers offered due to our technology explosion of this fast moving world.
    Thank you for blogging! You never know who God will touch and encourage in using your blog. I was encouraged today...reading the words your wife quoted about caring for you. My husband has cared for me for so many years. Yes, I wish it were the other way around, but only so I could do the caring for a bit as I would never want him to endure the pain I endure day after day. It takes an incredible person to love "in sickness and health" and it sounds like we've both been blessed with such people!

    God's Grace is Sufficient,

  4. L,

    Thank you for the kinds words. God is good. I don't know how Sarah and I would have been able to get through this past year without Him.

    I'm sorry to hear about your troubles. I am fascinated to learn about so many people who have gone through or are still going through different health issues, and I am glad to find that my blog can encourage others--it encourages me as well, being able to think about what has happened to me and how God has provided.

    If you are interested, there is a support group on Facebook for those who have Cogan's Syndrome: Cogan's Syndrome-Coganites.