Is it weird that I think a picture of a retrovirus is beautiful? Especially when it’s one that might just possibly be the cause of my 16-year illness? I’ve just read a report at npr.org that says that XMRV is present in two-thirds of CFS sufferers, compared to only 4 percent of the general population. Now, as my psychology professors were very insistent on drumming into my head in college: Correlation does not prove causality! And, even if XMRV does cause CFS, it will take some time before the appropriate treatment is available to the general public.
But I have to say that simply the notion that people are working on this, that they haven’t given up on folks like me, is almost too hopeful for words. I’ve never imagined this moment would come—when scientists would be this close to identifying a causal agent for my illness. It has seemed altogether too farfetched. And I’m not sure why. Perhaps it is that I still am haunted consciously or unconsciously by the notion that my sickness is not real, that really, I am just a slacker.
Or maybe it’s just that I gave up on allopathic medicine a long time ago. Or perhaps, more accurately, 16 years ago, it seemed to give up on me. Over the intervening years, I have gotten used to conventional medicine being unhelpful to me. There is no bitterness in that statement. In fact, I have often felt that there must be something wrong with my chemistry or my way of being that has caused me to be incurable in so many different ways. My expectations of doctors have become so measly that when, in the past few years, a medication has proven effective (for non-CFS ailments), I have been genuinely surprised.
And now I look at this magnificent picture of a remarkable organism that may even now be coding and recoding itself into my DNA—making itself one with me. I should feel violated, but strangely, I don’t. It looks like roses to me and again, I can’t help it, it is beautiful to me. Not that beautiful things can’t be deadly or, at the very least, extremely annoying. Beautiful does not equal good. Truth maybe, but not good.
I have long thought of my body as a fluid community of cells, rather than a solid, individual being. Consequently, I have tried to coax my cells to health—with words, with imagined light beamed into uncooperative places, with a sense of love that I hoped would penetrate to the heart of even the most stubborn malady. I have reasoned with them: “Hey guys we’re all in this together.” Apologized to them: “I am so sorry about putting us all through that experience, but please don’t punish me for it now.” And I know that with this idea of a retrovirus fresh in my mind, I am bound to start talking to it as well—whether or not it is actually there. “Hello, Rosy the Retrovirus, would you mind taking up a little less room? It’s getting a little crowded in here.” Perhaps I should be more forceful: “Get the hell out, and take your new DNA code with you!”
Aye, there’s the rub. Once a retrovirus has gotten its little claws in you, there isn’t any going back. I remember the sadistic little grin my Neuropsych prof donned as she explained to us that curing HIV (also a retrovirus) was impossible because it infiltrates one’s genome so completely that the host cells don’t even realize that they are replicating anything but their own original code.
As I understand it, current HIV treatments work by inhibiting the retrovirus’ progression. But, as my professor pointed out, this is only a stopgap measure. The virus is still present and, in fact, becomes a part of the host’s self on a very basic level. So if I do have XMRV, it is, right now, a genuine part of me. Of course, there are a lot of individuals inside of me right now that I would classify as not me—a plethora of helper and hurter microorganisms simply doing what I myself am: trying to live as well as possible. I don’t think this is what religious people mean when they say, “You are never alone,” but it’s so true. Forget about God, I carry a whole population of me-s and not me-s around with me wherever I go. (Come to think of it, where is the “I” in all of this?—Best leave that one for another day.)
Can we live in peace? I don’t know. I’m guessing not, though—since the prosperity of many of these organisms means illness or even death for me. Whether or not I am aware of it, I am probably, as I write this, making war inside my body.
And this is all natural—which, if you believe those labels on cereal boxes, means it must be good. You know, like hemlock and black holes. And like that picture of XMRV—natural, beautiful—and, if those scientists are right, one major pain in the ass.
To read more about XMRV and see its picture go here: http://www.npr.org/templates/story/story.php?storyId=113613955