With this new discovery of the possible connection between the XMRV retrovirus and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS), I am struck by the magnitude of the desperation for a biological explanation in the CFIDS community. All of us with CFIDS are so excited. But it’s a retrovirus! Like HIV! And we don’t know how it is transmitted. And retroviruses don’t go away. Ever. They hide out in the body and wreak havoc. Strangely, however, even this sentence relaxes me: “They hide out in the body and wreak havoc.” Because havoc has been wreaked. And now there is a suspected culprit. And doctors will have to stand up and pay attention.
I want an answer. An explanation. I want something to hang my hat on. I want it to make sense. I remember how relieved Alice James was to get a diagnosis of breast cancer. Breast cancer! A death sentence:
To him who waits, all things come!….Ever since I have been ill, I have longed and longed for some palpable disease, no matter how conventionally dreadful a label it might have, but I was always driven back to stagger alone under the monstrous mass of subjective sensations, which that sympathetic being “the medical man” had no higher inspiration than to assure me I was personally responsible for, washing his hands of me with a graceful complacency under my very nose. (Diary, pp. 206-7)
If I had a retrovirus I could say, “Well, the reason I am so tired is that I have a retrovirus. I should rest.”
And speaking of that, of rest and the need for it, versus the drive to productivity, I was thinking, this afternoon, about how tired I was, and about this newly discovered retrovirus, and I was thinking about how much I want to do in the world, and feeling frustrated by how little of it I accomplish, and I believe I was feeling a little angry at myself, a little self-reproach, and then I had to remind myself that I’m sick. I always have to remind myself that I am sick. Otherwise, I take it on myself, this burden of not getting enough done. I think there’s something wrong with me, myself, with my essence, rather than something wrong with my body. And I thought about the passage that Charlotte Perkins Gilman, my other soul sister wrote:
After I was finally free, in 1890, wreck though I was, there was a surprising output of work, some of my best. I think that if I could have had a period of care and rest then, I might have made full recovery. But the ensuing four years in California were the hardest of my life. The result has been a lasting loss of power, total in some directions, partial in others; the necessity for a laboriously acquired laziness foreign to both temperament and conviction, a crippled life.
But since my public activities do not show weakness, nor my writings, and since brain and nerve disorder is not visible, short of lunacy or literal “prostration,” this lifetime of limitation and wretchedness, when I mention it, is flatly disbelieved. When I am forced to refuse invitations, to back out of work that seems easy, to own that I cannot read a heavy book, apologetically alleging this weakness of mind, friends gibber amiably, “I wish I had your mind!” I wish they had, for a while, as a punishment for doubting my word. What confuses them is the visible work I have been able to accomplish. They see activity, achievement, they do not see blank months of idleness; nor can they see what the work would have been if the powerful mind I had to begin with had not broken at twenty-four. [The Living of Charlotte Perkins Gilman, p. 98.]
Ach! The heartbreak! I know, Charlotte! I know!
And I thought of the Dylan Thomas quote,
Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.
He was talking about death, but the poem inspires me to continue to fight against all of the constraints of my illness, to make something of myself, to bring something to this world, to leave something behind me when I go.
The life coaches have a thing they suggest. They suggest that in addition to writing a list of things to do every day, that at the end of the day one also write a list of things accomplished. I think this is a grand idea.
I got completely exhausted today at work, but I helped six people negotiate their ways through their own challenging circumstances. I scheduled an appointment with the podiatrist and called the library to renew an interlibrary loan book. I kept up on my email and Facebook. I cooked breakfast and lunch and dinner. I came home and did some writing. This, for example. And I cut my nails while having a good laugh with Marina about the challenges of our illnesses, and about the little voice that always says, “You should be doing more, and doing it better.” The voice that discounts the illness.
She told me about a 14-year-old girl with Marfan syndrome who has become an outspoken activist in the community. She and her mother were boarding a plane when the flight attendant told the mother she was only allowed one carry-on. The mother explained that her daughter is disabled by Marfan syndrome and is not able to lift more than 10 pounds, so she was carrying both of their bags. The flight attendant was unswayed. In fact, she called security and had mother and daughter taken away.
As Marina was telling me this story, I interrupted to say, “Push her off the plane!” I meant the flight attendant. And I meant when it was in flight. I hated that flight attendant.
Talking it over with Marina, however, I realized once again that Jung was right about the shadow self. That flight attendant represents a part of me that I hate: the narrow-minded part that discounts my disability and tells me I need to do better at doing more.
 Alice, the sister of the writer Henry James and the philosopher William James, suffered throughout her life with neurasthenia, a 19th century illness that caused symptoms similar to those of CFIDS.
 The 19th century author of the feminist classic, “The Yellow Wall-Paper,” who also endured neurasthenia all of her life.
 A genetic disorder that causes weakness in the connective tissue, resulting in heart problems and vision problems, among other things.