Monday, July 22, 2013

It's Not Always Easy (Living With Cogan's Syndrome)

July 21st, 2013

Sarah and I trekked our way from Windsor back to our home in New Milford an hour and a half away. It has been a mentally and physically draining few weeks since our move and nothing has slowed down. While driving, Sarah and I began to reminisce about my time on the steroid, Prednisone, during various stages of my life with Cogan’s Syndrome and the effects that it caused on my body.

“That must have been really hard for you,” she said, “gaining the weight and experiencing the onset of adult acne.”

“Yeah,” I replied. “I have to admit something to you: I’ve been having a hard time with my weight recently as well.”

“Really? How so?” Sarah was probably confused because I am at what most people would consider a normal weight for my height.

Taking a deep breath, I continued, “I just haven’t been feeling too happy about the weight I lost.”

When I first got sick I gained twenty pounds. I felt gross and hated looking in the mirror. I’ve since lost all of the weight, but where I was once uncomfortable with how heavy I looked, I’m now uncomfortable with feeling “frail” and “weak.”

“When do you think this started?” Sarah asked.

“Just this past week,” I said, “seeing my weight on our scale and then again at the doctor’s office and at my treatment—it didn’t feel good. I was embarrassed.”

“Did the nurse say anything to you about your weight loss?

“No, but I don’t feel good about it,” I said.

“Is it just the weight that’s been bothering you?”

“No, I’ve just felt a bit uncomfortable in general,” I said.

“Around others?”

“Yeah, around others.”

“Did you feel uncomfortable at the party last night?”

“Sort of, yes, but mostly just tired,” I said. “Everything becomes an effort and I hate it. I really hate it. It’s been really hard lately to accept and understand why I am in this situation; why I am different than everybody else.”

“Well, Max, this happened to you so suddenly. You were ‘normal’ and then suddenly you weren’t. But I’m glad you’re telling me this.” Sarah replied with a bit of a shocked expression. “I had no idea. You mask it very well.”

“I suppose I do,” I said, feeling the sadness and shame rise up through my body.

After weeks of keeping it all in, I succumbed to an urgency in my heart, letting loose a barrage of emotional encumbrances that had been plaguing me.

“It hasn’t been easy, Sarah,” I said, looking out the window as the small country towns passed us by. “I’ve been struggling and feeling depressed since shortly before we left Naugatuck.” That was over a month ago.

“Yeah,” she said, “I remember you worrying about the strenuous thought of moving and all of the logistics.”

“I don’t think I’ve fully recovered,” I said. “With you at work, I’ve been telling myself that I need to do things—to be active—so I’ll drive you to work some days but the strain that it puts on me prevents me from doing anything else. I’m too exhausted.”

I looked at Sarah, failing to read her thoughts and ashamed of what I was telling her, but I continued on.

“Subsequently, almost every day consists of me doing work for about an hour or so in the morning, and taking a break. Feeling very tired and using the excuse that because of my illness, I should be able to rest, I end up not doing anything productive for the rest of the day.”

“I’m really happy you’re telling me this,” Sarah said. “I had no idea.”

“I am too,” I said, fighting back tears. “I didn’t think anything of it the first couple of days, but eventually I just grew embarrassed and was too afraid to tell you. I don’t want to be this way, but I’ve been in this depressed state and I can’t get out.”

As I spoke, Sarah nodded and even opened her mouth a few times as if to speak, but then held back.

The conversation continued in the same pattern as we arrived at home: me talking, Sarah asking questions, me talking some more, and so on. I have probably mentioned before that I am generally a man of few words—unless it’s about anything regarding science fiction or fantasy—and I found myself expressing a seemingly ever-flowing stream of thoughts and feelings.

“I’m sorry to be talking so much,” I said.

“I actually really appreciate it when you are this open with me, Max.” she responded.

We plopped our weary selves on the bed and laid side by side, looking up at the ceiling. The conversation waned a little. Sarah turned on the air conditioning and came back over to me. As I often do, I began trying to think of practical ways of bettering my situation.

“I just need to start figuring out a way to get out of the house when you have the car. Maybe I could take a bus downtown and then I could do my work at a cafĂ©. I always do better when I’m working on my laptop at a cafe,” I reasoned. “I’ll just have to look into the bus schedules…”

Sarah listened and then carefully said, “I think it’s a really good thing that you want to do something to make things better—and that probably will make you feel better to a degree. But, I think your feelings of apathy are just a byproduct of what’s underneath and what’s really going on inside you. I don’t want you to get back into that mode of doing to make things better. You really need to evaluate your feelings and try to figure out why you feel the way you do and not just how practically you can fix everything.”

I sighed heavily, the corners of my mouth wobbling at my attempts not to get too emotional. I looked up at 
Sarah as she leaned over me, looking at me with such love and care.

“You know, people are so proud of you for how you have handled this situation,” she said and the first tear fell from my eyes. She brushed it away and continued, “But you don’t have to always act like you have everything under control. People will understand—you have gone through and are going through something extremely difficult.”

“I know. Thank you, Sarah.”

We lay on the bed for a little while longer, a few more words spoken but mostly in silence as Sarah continued to comfort me. As she held me I was reminded of the long and demanding months that she took care of me during the worst that Cogan’s Syndrome had to offer. I was happy to remember that through it all, Sarah has been and will be there and despite how I might feel tomorrow, I know that I’m understood and loved.


  1. Thanks for sharing what has been going on with you, Max! It is totally understandable that you might be discouraged from time to time dealing with the vertigo, etc. Love you and appreciate you!!
    Michelle and Dave

  2. Hi Max,
    my name is Heike, I am from Germany and I also suffer from Cogan's. When I read your blog I was so excited to have finally found someone who might be able to understand what I have been going through and how Cogan's has affected my life in so many different ways. Cogan's syndrome still seems to be a rare disease and it is almost impossible to find good information about treatment or future perspectives or people to share with.
    I would love to get in touch with you but I am not sure if you are still active on writing your blog. If you get this message and you feel like replying please do so under: I would be really happy. Best regards, Heike