This is very similar to experience with Chronic Fatigue Syndrome.
Several months later, I was sitting in my apartment in my old oak rocking chair, reading, when I looked up and thought to myself, Jesus Christ! My head hurts! And my throat! And that was the beginning of the end. It was frightening, the speed and the power with which the virus swept over me. Within 24 hours, I crawled from the bed to the bathroom, resting several times along the way. I kept expecting to get better, but I never did. Any hope of finishing my doctorate was rapidly fading. I moved back to Memphis to live with my parents and my grandmother because I simply had no other choice. I couldn’t work, I couldn’t cook, I couldn’t do much of anything except lie in bed.
It turns out that I had caught a virus that attacks the central nervous system, variously known as Epstein-Barr Virus / Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Systemic Exertion Intolerance. It causes absolute crushing exhaustion and very significant cognitive impairment. I remember dialing a phone number from a piece of paper, one digit at a time. Sometimes I felt so “stoned” from the illness that I knew it would be far too dangerous to drive a car. Studies show that the levels of pain and debilitation with this illness are equaled only by the last 2 weeks of terminal cancer or heart disease. Occasionally, on a very good day, I could go out to lunch (and that was it for the day), but on a bad day, I couldn’t make it to the dining room table, and my meals had to be brought in to me on a tray.
I went out to Denver (the flight was an ordeal) so I could go to the National Jewish Hospital there which specializes in allergies and immunology. I was in the hospital for almost a month while a team of 3 doctors tried to figure out what was wrong with me. They knew I was very sick, and they were determined to get to the bottom of it. I respected them, I was impressed by their efforts, and grateful. They performed zillions of tests. That’s where they discovered that I had an immune deficiency.
From the outset, my symptoms strongly suggested a virus. It was so debilitating that half the time, I couldn’t sit up in a chair for more than 20 minutes. That’s when I began my strange habit of lying down in all kinds of unusual public places, such as benches, back seats of cars, stretched out along a row of chairs that had no arm rests, or even on the sidewalk or the floor at the airport, simply because I couldn’t walk any further. “I’m OK, I’m just exhausted,” I would reassure the kind people who stopped to ask if I needed help. “Thanks for your concern!”
I assumed I was dying. (I couldn’t imagine how anyone could feel that bad for that long and not be dying.) But when they told me the diagnosis, it was so much worse than imminent death! They told me I had Epstein-Barr virus, that I’d never be well again, and I’d never improve at all, but that it wouldn’t shorten my life – that I’d probably die of old age! I didn’t even know that there existed an illness that’s so severe and lasts forever. When they told me I wasn’t dying, I almost laughed – I’m supposed to be happy to suffer day after miserable day until I finally die of old age? Is this some sort of a sick joke? It was so awful, it was almost funny.
They said the virus was only contagious during the first few weeks of the illness, so that was good. Of course, the prognosis was appalling, but at least I had the comfort of knowing that I’d had a really thorough diagnostic work up by some top-notch guys. I asked them specifically not to sugar-coat the prognosis, but to tell me the un-varnished truth, no matter how horrible, and they certainly did that!
I thought seriously about committing suicide, and I began hoarding pills. But I’m glad now that I didn’t. My productivity took a nose dive when I got sick, but it didn’t descend to zero. I managed to get some work done, despite being spaced out and exhausted, by a great effort of will – by what I think of as “Teutonic determination.” I’d read a book at least twice, and I’d take much longer to write a paper than I used to, going over and over drafts.
So anyway (deep sigh!) I started an Epstein-Barr Virus support group which met monthly at the Episcopal church where my family belonged. After my previous triumphant victory over the “mystery illness,” I mistakenly thought maybe I could somehow make progress on my own. Whereas I was hell-bent on getting better, finding the smartest doctors in the world, and keeping up with the latest research, the other members of the support group seemed more interested in venting and learning to cope with the illness. I discovered that most of these people are told it’s “psychological” for years and years – at least I had a diagnosis. The doctors in Denver had told me that there was no cure, or even very much knowledge about the virus, and that I’d be very sick forevermore. However, even first-rate doctors are sometimes wrong, progress marches on, and I had to keep trying. Hope springs eternal.
Borrowing from 2% milk, I realized that I now lived a “2% life,” but even that adds up when it’s spread out over many years, so I tried to figure out how I could make the best possible use of my new, severely diminished “life force.” I pursued a two-track plan simultaneously: one for if I never got any better (write a novel), and the other for if I did (keep up with the research). This was in addition to trying desperately to improve my health, all of which required more energy than I could muster.
Wan Ying, my friend from Austin, came up to visit me in Memphis. She completely charmed my family with all her funny stories about China. I wasn’t able to do much, but it was great to see her again, and to just sit around and talk and laugh.
I still corresponded with Jensen, and he agreed to do an interview for The Eugenics Bulletin over the phone. It turned out to be more of a conversation, which I taped over several days, and it lasted almost 5 hours. It wasn’t intended to be anywhere near that long, but we enjoyed talking with each other, and I think he was trying to be especially nice to me because he felt sympathy for my plight. It was good to be able to ask him endless questions because he’s so brilliant and fascinating, and I have so much respect for him and, quite frankly, affection as well. After our long conversation, I started typing up the transcript, and quickly became exhausted. I tried again. And again. And again. The audio of this long conversation has just recently been made available in full on Counter-Currents, thanks to Greg Johnson’s efforts. The content is quite interesting, but also it reveals what a warm and gracious man Jensen was.
Over the years, I tried dozens of medical treatments – from traditional to alternative to downright bizarre (such as honey bee stings) (which actually helped me!) I’d estimate that not quite 20% produced some detectable improvement, making the entire odyssey worthwhile from my point of view. Also, I discovered the wonderful world of palliatives. By 1997, I was still sick, but my condition had improved just to the point that I could live independently, so I moved to an apartment not far from Boston because it has exceptionally good medical care. By a great stroke of luck, I ran into the same super-smart immunologist there in Boston who had originally diagnosed me in Denver many years before.