Looking Back

You know how every now and then, you feel like you are watching a movie of your life, rather than living it? How you look at the person you are with and thing, "Is this real, or just a dream?" Maybe I'm the only person who ever has these out-of-mind, out-of-body, life-is-surreal experiences. I'm hoping I'm not, or else I've probably confused and lost all of you by now. :)

I have had a two of those experiences over the past week. One, while spending time with Tina, my fellow mono-buddy at her lovely house in Sylva. We sat in the shade on a hillside, creeping up and back towards the forest behind us as the coolness provided by the shade receded. As we shared our memories and talked about how chronic illness had complicated our lives, I got this distinct feeling that I was there, but I also wasn't. I knew I was talking about my life, and I knew this was the Tina I lived with in North Carolina... but... it almost didn't seem like it was my life. Or that it was my Tina. Maybe it's related to that old adage, "You can never step in the same river twice." Or something very like it.

Last night, I had another one of those experiences I was sharing about at the top. I was at a Bible study group for the first time with four complete strangers. I felt like such an oddball. I haven't met truly new people in such a long time. Almost always when I meet someone, I already have some connection to them. We have a mutual friend, we go to the same school, we read the same authors, something. Here, there was next to nothing. I think part of the reason I felt that way was because I am still trying to figure out who Camille is in light of the three-year-young illness I have. It wasn't a bad or uncomfortable feeling, exactly. It just was. It was a fact. I was new. I was in control of what these people knew about me.

And yet, I chose to tell these complete strangers about my illness. As things happened, it was pretty neat. The study group wasn't actually studying anything last night; it was more of a social time, which was great for me - eating good food, and sharing our favorite books. I brought with my a copy of Polishing God's Monuments. (For my full description of the book and information on where to get your own copy, check out this older post.) After introducing my favorite author P. G. Wodehouse, I began telling them the story of Juli Andrews, whose story has a lot of parallels to my own. In college, she contracted an extremely virulent Epstein-Barr virus infection, and that was the beginning of her long battle with CFS/ME and multiple chemical sensitivities. Juli faced other problems later in her life as well, including surviving ovarian cancer. After sharing the book, I told them that my story was similar. Like Juli, I came down with EBV which just... stuck. I mentioned the term "chronic fatigue syndrome" a few times. And then, it hit. One of the girls asked, "So, what exactly is chronic fatigue syndrome?"

My mind went blank... numb. What is chronic fatigue syndrome? What is this monster that has dominated my life? What really is it? That's the million dollar question, right? Because no one really knows. No one knows where it came from or why it is so radically different from case to case. But we know one thing: It is Real. Time froze as all of the last three years have came flooding back in a wash of emotion. Chronic fatigue syndrome? It's just plain hard.

I did give a medically valid explanation, quickly stating that "chronic fatigue syndrome is NOT just being tired all the time." I paraphrased the ICC's journal article and explained how CFS is a multi-systemic neurological disorder that effects the respiratory system, the immune system, the CNS, and the mind. I explained different theories, the similarities of CFS to other more well-known illnesses like Lyme's disease and auto-immune disorders.

But I still couldn't tell them... really tell them... what it was like. They know it screwed up my life plans, but do they really know? Does anyone, other than fellow sufferers? I told them about CFS, but I didn't tell them about food allergies, candida, chronic sinus infections, insomnia. I didn't tell them about the difficulty of holding down a job, maintaining friendships, keeping up with the world and all its pain, or the high divorce and suicide rates of CFS patients... or even the more minor issues like how hard it is to get out of bed and feed yourself. I didn't tell them about brain fog, chronic pain, doctors who don't understand, the expense of treatment, or specialists. I couldn't. How could I?

Chronic fatigue syndrome... It's hard. Just plain hard.