How I Turned Up Missing

San Francisco was my destination in 1992, now it's the site of one of many May 25 protests around the world about ME/CFS, and the "millions missing," of which I am one. This May is also my 24th anniversary of getting sick, coinciding with my 25th Oberlin College reunion.

In May of 1992, I was waiting around for Oberlin Commencement (I had graduated officially in December of '91) and I had suddenly contracted the ME/CFS "flu-like illness" that harkens the onset of the disease, though I had experienced what is known as "prodrome" (early, shadowy, pre-illness symptoms) in the years before, and in fact almost dropped out of Oberlin and stayed around the Bay Area in the Fall of 1998, when my body seemed to be saying to me stay but I didn't listen.

But let me backtrack to the "prodrome" which -- if research would help us -- could become useful foreshadowing for patients and doctors: I had left Oberlin for a semester off in the Fall o…
The best offense is a good offense: what we need to learn from AIDS

According to the CFS Untied blog, the CFIDS Association of America just proudly touted an “advocacy” style for ME/CFS that consists of “using one’s inside voice”:

The president of the CFIDS Association of America said that she heard the announcer on National Public Radio state that "we use our inside voices to bring you the news." She likened that to the "inside voice" of the CAA as they pursue their activities of stimulating research, reporting on the success of their grantees, and sharing information about upcoming events and important publications.

A quarter of a decade into the crippling epidemic of ME/CFS, we have yet to learn what AIDS activists taught us about inside voices or, more generally, about interiority from the perspective of men who had come out of the closet only to be faced with social ostracism and Kaposi’s sarcoma. Those activists didn’t use inside voices unless they …
This is Part III of a 3-part essay. Read Part I here and Part II here.

Strays: Part III

Late Spring 2008

Eight or nine months into treatment, as my heart made slow progress on Rifampin, I hunted around the Internet reading abstracts about bartonella and its related cardiac problems. It was hard to find anecdotal accounts of some of the rarer strains in humans. I began mining veterinary articles, which -- perhaps because the subjects were nonverbal -- included more elaborate description of the physical details of the subjects. These were the first articles I found that truly characterized cardiac bartonella. It was around that time that I found a near-description of my own cardiac symptoms in a veterinary article about twelve dogs with heart problems related to bartonella vinsonii subsp. berkhoffii, a strain of bartonella that had known transmission from animal to human. It had been recognized for some time in coyotes, with documented coyote-to-human transmission. On a parallel track, …
This is Part II of a 3-part essay. Read part 1 here.

Strays: Part II

"If a lion could talk, we could not understand him" -- Ludwig Wittgenstein

December 2004- Spring 2008

It is hard to describe the futility of explaining to people a lethal, fringe reality that it outside of their understanding. Wittgenstein had it right when he said "If a lion could talk, we could not understand him." Talking animals only exist in cartoons, and people would balk at the very idea, just as they balk at the idea of homebound, medically disenfranchised patients presenting their own stories. But Wittgenstein was getting at something deeper: language is borne of one's own physical reality, and a lion's words would always be near-misses to humans. Words are, by nature, a way of pinning down the gestalt of experience, but that process does not translate the life of a lion to the life of a human. This is why the Innuit need a hundred words for snow, and the Aztecs needed few to no…