Monday, January 25, 2010


And now, just as you prepare to tell your own story, you hear another story, one you know will be with you as you make your descent.

This is one of the intros in Susan Griffin's memoir about Chronic Fatigue Syndrome, What Her Body Thought. It just came in the mail today. I call it an intro but I don't really know what to call it. It's not an epigraph, there are already two of those, one is from Dante. I don't fully know what it means yet because I stopped reading after the first few paragraphs. I thought it might have something to do with Dante, I think the word "descent" tipped me off, but when I googled it the only thing that came up was the book itself. (And now this blog comes up too.)

I wanted to recap this evenings events in my private livejournal and then go to bed. I was just going to glance through this new book first, see what it was like. I already had my livejournal window open and my subject line written when I opened it and started reading.

I found out I tested XMRV positive today. I'd already journaled about it earlier, just three sentences, about what little impact I felt, and how this lack of emotion must prove just how sure I'd been that I had it. I sent a quick email to my parents and my boyfriend, (who wrote back "Don't know if congratulations are appropriate, but...") Then I forgot about it. I went shopping. (One store, one specific item in mind, and out) Then I went to therapy, talked animatedly for an hour, but barely mentioned it. I talked mostly about how hopeful I was feeling lately about Dr. Cheney's protocol. Then I went to Erewhon to buy goat's milk kefir and bee pollen. I've been happy with the coconut milk kefir, but I kept hearing goat was better so I tried it, but the vegan in me felt wrong drinking goat's milk, said I was doing good on the coconut and should just go back to it. Then I read in The Body Ecology diet about how goat's milk produces mucus which lines the stomach and can soothe the intestines, which I need, so I decided I'd switch back. The bee pollen was because I am reading Superfoods and bee products are the fourth superfood. It's actually recommended on Dr. Cheney's blog. (The book, not the pollen.)

I came home and rested, pretty satisfied with how much I'd done. Then I wrote more in my journal, not about my successfully busy day, but my thoughts, sparked by this onion av club article, on how Conan O'Brien's exodus just shows that no one my age cares about The Tonight Show and its implications on what it would mean to work in television and all entertainment media in the future, etc, etc. The point is I was feeling pretty good. I was pretty sure it was due to the raw cacao beans I'd eaten (superfood #2) The first time I had raw cacao, at Cafe Gratitude in San Francisco, I was really, really, happy.

Then I went over to my boyfriend's and sprinkled bee pollen on my salad. A half hour later I was nauseous. I get nauseous a lot, but it hadn't been that bad in a few weeks. I did the drill, tried to think of everything I'd done different that day. ("My enzymes finally arrived...but they never made me worse before...I had coconut water kefir AND goat kefir, but that was hours ago...can you have too much kefir...?") I knew it was the bee pollen though when I threw up. I often get nauseous but I never throw up.

Feeling defeated, I went home to drink some warm broth and get into bed, but not before quickly writing a private journal entry about what happened. In the subject headline I wrote "vomiting like icarus" and then came up with the sentence, "I threw up the day I found out I had XMRV." It went on, "but not for that reason" and I was going to write about how good I felt today with my superfoods and all, and how ultimately, it all came crashing down.

That's when I remembered I had a new book and my new-book-curiosity compelled me to read just a little. In the first chapter, she starts out saying she is here to tell a story, and describes a ride on the Metro in Paris, speculating on the other passengers conversations. That's the first paragraph. In the second she reveals that her own story "concerns an episode in an illness I have had for more than a decade." As I read on I find it's all so familiar. Not just the story itself, but the feeling of recognizing myself in it. I think of all the times and all the places in the last few years, blogs, essays, books, forum posts, where I've felt that crucial resonance. But this time was different, and it was different because of XMRV. I thought of my test result, and suddenly felt linked to her and all these people in a way I never did before.

When I read Stricken, I was in tears pretty much the entire time because I identified with these stories so much but had never actually heard them told. I even wrote down a list of quotes as I read that were strikingly similar to things I'd written myself in my journal. Tonight, beginning this new story reminded me that Chronic Fatigue Syndrome is more than just a disease; it's a community. It's over 20 years of suffering and striving for recognition, held together not just by a shared collection of symptoms, but by a shared experience.

When I was first told my XMRV culture was positive, I didn't react because I didn't know how. I'd been asking myself for months how I would feel when I found out, and what I wanted the result to be, even though I already knew. I read this quote somewhere from Judy Mikovits, who spearheaded the study, "You talk to CFS patients and they say, 'Thank God I have a deadly retrovirus. Thank you,' because now that makes their illness real. They aren't just crazy"

That is pretty much how I felt when I first heard about XMRV, but eventually the irony caught up to me. What is the appropriate response to being told you have a potentially deadly retrovirus? The answer I had come up with was, it doesn't matter, not if you've already been feeling the effects for years. It took me so long to convince myself it didn't matter that I didn't have any abnormal test results, so why should it suddenly matter now? And so maybe in that way it doesn't, if I had been one of the 2% who tested negative, not much would have changed. I would still be sick. Instead getting this test result feels more like getting a membership card or even a diploma. "Congratulations on getting your XMRV from the Whittemore Peterson Institute! Now the world will finally be able to see us."

As I was writing all this in my journal, it became clear that I was writing in the wrong place. I've had this blog all set up for weeks now, and I've been meaning to make the move. I sort of took that quote up there as my cue. I've been wanting to start a blog for years...but I've just never had the energy. These past few weeks though I've been able to write more than usual. So here is where I'm starting my story.


  1. Enjoyed your words...understand your sentiment. Looking forward to reading Superfoods too. Have had CFS for 14+ yrs. Thanks for writing.

  2. Thanks for commenting. I haven't even told anyone about my blog yet, how did you find it? Careful with Superfoods by the way, I would recommend trying everything in very small amounts.