Mayor Ray Nagin reports that the "storm of the century," Hurricane Gustav, is bearing down on New Orleans. Are we better prepared this time?

Time reports: "Stung by the images that flashed across the world, including the photo of an elderly woman dead in her wheelchair, her body covered with a blanket, officials promised to find a better way."

I remember that image too – the wheelchair, of course, is what got me. Not only the wheelchair, but also the appalling lack of recognition of disability issues in the wake of Hurricane Katrina. I heard reporters talking about race and class and sidestepping the disability issue. I remember another image of a man with no legs on a rooftop. The newscast cut from that image to one of a reporter saying quizzically, "Why didn't some people leave?" The reporter, of course, drew no connection between those crazy stragglers and, say, the lack of legs.

So what's the plan for Gustav? "This time, the city has taken steps to ensure no one has an excuse not to leave. The state has a $7 million contract to provide 700 buses to evacuate the elderly, the sick and anyone around the region without transportation," reports Time.

Okay, well that appeases me slightly. They're going to consider the disabled this time? Great – give 'em "no excuse not to leave." But then the plan gets more bizarre. The shut-ins are apparently supposed to find their way to secret "pickup points" and not expect to be scooped up from their homes and beds. Not only that, but they are supposed to intuit the location of the "pickup points." "In New Orleans, the locations of the evacuation buses were not made public because people who need a ride are supposed to go to designated pickup points, not to the staging area." That's right: flex those arm muscles, Mr. No Legs: it's time to drag yourself to a "pickup point." Would it be too much to ask if there will be an accessible van to take some of the less fortunate hobblers to the pickup point? Can those who are bedridden at least be given a gurney with wheels and a push in the right direction?

Apparently not.

Resident Elouise Williams, 68, reported that she called the city's special 311 hotline number until she was "blue in the face," trying to figure out what to do, then decided to stay in the Algiers neighborhood to check on inhabitants who might not be able to get out. "My thing is, my fright is, if we have somebody in these houses and they're not able to get out, they're going to perish," she said, "And we had enough of that in Katrina."

Why does Elouise seem to be the only person with any common sense?

Maybe it's because people are so blinded to the realities of age and disability that they can't do anything but engage in bizarre victim-blaming and projections of personality attributions when the issue of disability or age comes up. AOL News reported yesterday that more than half of those who died in Hurricane Katrina were 75 or older. This is an appalling statistic. The article speculates why this might have been the case: "The results present a tragic portrait of elderly residents who may have thought the warnings were a false alarm, who feared that abandoning their homes would lead to looting, or who simply didn't want to leave their familiar surroundings for the unknown."

Of all of the victims who died, 22 percent died in hospitals and 12 percent in nursing homes. So am I to believe that some woman hooked up to dialysis was having a phobia about looting and "the unknown?" And that some guy with a walker didn't get out because he didn't want to "leave his familiar surroundings?" Are we this far off from recognizing human frailty and the need for basic accommodation?

CNN's coverage focused on those who "just won't leave" during this mandatory evacuation period, like those wacky restaurateurs who just can't stop selling bucketfuls of seafood as the Hurricane bears down. Oh, and also this disabled guy:

"Across town in the 9th Ward, a neighborhood decimated by Katrina, Sidney William climbs slowly out of his truck. He's 49 but moves like he's 20 years older.

'My legs hurt; my feet hurt a lot,' he said. 'It's not easy.'

William wants desperately to leave his native New Orleans to avoid Gustav. He didn't leave for Katrina because he didn't have the money. He won't talk about what happened to him during that storm.

'I wish I had the money to go.' Rejected for disability subsidies, he depends on his 23-year-old daughter, Gloria, to support the family."

All of this feels a little too close to home for me, since I have spent much of my adult life fighting for disability accommodations and trying to get people to understand that there are some of us who can't go to "pickup points" or travel at will because of our disabilities.

Of course the Americans With Disabilities Act only fights for "reasonable" accommodations for the disabled, and that word "reasonable" is a tremendous loophole. When basic human rights are not recognized, and people in nursing homes are given absolutely no way to escape the horror bearing down on them, they'll almost always – by some implication – be called unreasonable. They'll be called phobic about looters, or terrified of the unknown, or unable to recognize an alarm they have memorized over decades of living on the Gulf coast.

I hope one day the media, the government, and the public decide that "reasonable" accommodation is accommodation that values human life enough to meet it on the doorstep.

My Book Notes essay on Pathogenesis was just posted at the fabulous literature and music blog Largehearted Boy.

This blog is worth checking out for a lot of reasons -- free music downloads, musicians talking about books, writers talking about music -- but I think the Book Notes column is such a fantastic, original idea. From the blog: "In the Book Notes series, authors create and discuss a music playlist that is in some way relevant to their recently published books."

From Largehearted Boy:
"Pathogenesis is ideal poetry for me, powerfully personal and yet global in its implications. A call to arms, these poems follow Munson's battles against the medical community and her own body as she fights Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Multiple Chemical Sensitivities (MCS)." Read the whole Book Notes essay!

Just when I thought there were no other ways to be pathogenically screwed, I have been corkscrewed.

I have spent most recent months in what Pamela Weintraub called, "the gullies of sleep so black that, except for the nightmares, I thought I might be dead," except for me most of this was waking sleep. It's hard to describe the vacuity of my days and nights, except to say this much illness is like losing time while being exceptionally present to it, not a bit dissociated from the torture.

On November 1, I received a diagnosis of Lyme disease in addition to my other ailments, and my latest Western Blot test was positive, indicating the spirochetes have taken hold. With Lyme compounding the already-debilitating brain dysfunction of CFIDS and MCS, my writing has become flat and pragmatic when it comes out at all. One doctor noted "Dead Creativity" as a common personality change of Lyme, but the cognitive problems go beyond that. As Amy Tan (The Joy Luck Club) wrote about her Lyme, "By day, my memory was held together with friable threads, my concentration was as easy to disperse as blown dust, and when I tried to read, I often found by the second page that I had no idea what the book was about. I did not possess any of the skills necessary to write fiction, for I was barely able to traverse the distance of sentence to sentence, let alone keep in mind a narrative that had to span four hundred pages and keep taut multiple intricacies of plot, characters, and thematic imagery."

I've had cognitive impairment for almost sixteen years, so I know what it is to write in the sand at high tide, but the additional assault on my intellect has been brutal.

Before that deer tick crawled up my flesh in June of 2007, things were looking up. I had an upswing from CFIDS and MCS in May. I was feeling slightly better than I had in a few years, except that I still had horrendous cardiac symptoms. I had a continuous sensation in my visceral heart that was almost beyond description. It felt if I were lying on a counter squeezed between the parts of a hand-crank steel citrus juicer, with a muscleperson crushing the two plates around my heart as it lie there like a deflating orange. Sitting up or trying to leave that metal vise – even for a minute – would intensity the feeling until the most crushing, suffocating sensation would surround my heart and stake it to my chest. The sensation was horrifying and continuous and had gone on for almost three years: my worst symptom of all of my years of CFIDS. During that time, I had to eat most of my meals lying over the side of a queen-sized organic mattress on the floor of my living room, so my head would be below my body. I was using an absurd computer setup that looks like an iron lung. My ex built the box that hangs from the loft above and houses a computer screen. My PCA built the heavy frame my single futon rests on beneath the screen. On a typical day, I would crawl between the box and the futon frame and put the keyboard on my lap. I spent most of my time in that uncomfortable place, lying flat with my legs elevated, because my screen doubled as a TV and is hooked to the satellite – and I lived as if I was trapped under a fallen tree. If I tried to be upright for even a few minutes, my cardiac symptoms would get so bad it would feel like the oxygen was being squished out of every corner of my body by a large steam press, and that my heart would be imminently crushed beneath the weight.

But by May my heart was finally – after three years – not continually giving me that crushing, suffocating sensation that I have only read about in old homeopathy literature describing some types of pericarditis and one cardiology textbook from 1854 that stated matter-of-factly that most patients with my group of symptoms die. My upturn was due to a new medication from pig livers (Nexavir), found by Dr. Paul Cheney to help patients like me who have low cardiac output. My standing cardiac output a few years ago was, from the case studies I could find on similar testing, roughly equivalent to that of a 79-year old with Class IV heart failure. My doctor did not seem particularly concerned about this, or by the fact that I was suffering a kind of psychological Crush Syndrome under that tree of my gravely restricted life.

After a few months on pig potion, I was also able to stray outside of the confines of my iron lung desk. I could walk to the garden twenty feet from my porch and watch the seeds sprout. I could sometimes take short drives in my car – not far enough to go to a medical facility but I got to see chickens pecking in yards and goats nuzzling against fences. I wish I could say these things were paradise but I was terrified my symptoms would come back even worse (which often happens with CFIDS). Around the same time, I had gotten back to my mindfulness meditation practice (inverted with my legs against the wall), and it was actually making me have some visionary instincts about my body.

In June, for example, I had a sudden urge to buy a lot of tinctures and purchased herbs I knew little about because I was instinctively drawn to their names, such as Spilanthes and Usnea. A surge of early summer heat drove me outdoors. Recently, I was reading how microbes change one's posture and personality to propagate themselves, or make infected parties susceptible to other microbes. Apparently this worked on me, because once outside I had to lie down, where bugs could more easily have their way with me. I was flat on a blanket in the grass, the breeze tickling up my legs that were elevated on a slight incline leading to some overgrown plantings. A week later, I awoke with a tremendous toothache. It felt like someone was driving a poison-tipped spear through my face. Just as suddenly, my neck hurt, I could not walk straight, and I found myself lilting sideways like I was having a stroke. My cognitive problems were worse than ever and I felt so tired – not CFIDS-fatigued but an odd, poppy field vacant tired. I decided to take an old bottle of Amoxicillin because I thought it would help the toothache. A few days later, I found a tick bite on the back of my skull.

My box of Spilanthes, Artemisia Annua, Usnea, and other tinctures arrived in the mail around that time and I began experimenting with them. I hadn't known when I ordered the herbs that Spilanthes and Usnea are part of a well-known herbal Lyme protocol used by a Dr. Zhang, and that Artemisia Annua is often used against babesia, a common tick-borne co-infection that can occur with Lyme. Having these herbs on hand when I found the tick bite was prescient.

But the bump on my skull gave me an eerie feeling. I had looked into Lyme before. It was on my radar since my partner at the time I got CFIDS had previously had Lyme and she was beginning to experience post-Lyme arthritis when we met – a very painful reality for her since she was a classical pianist. Some activists at one point had sent me speculation about borrelia burgdorfi transmission through body fluids. I didn't probe too deeply, partly out of a protective instinct that I didn't want to burden my ex-partner, who is still my best friend, with the idea that she might have infected me. I did get tested a couple of times, but most Lyme tests are notorious for producing false negatives, and Lyme is a clinical diagnosis based on symptoms as well as test results, so I never got a clear answer with those two negative tests.

The events in May and June in fact happened exactly fifteen years after my flu-like onset of CFIDS, which had started before commencement at Oberlin College and continued on through a terrifying move San Francisco, and had the same eerie feeling of foreshadowing that made them seem like I was watching the events unfold from the other side of a trick mirror. I felt like I was getting another chance during a traumatic revisit of the charred crime scene where I had been suddenly stripped and pathogenically violated. Dr. Cheney believes in moments of gene reshuffling many years into CFIDS, when the genetic hand one has been dealt, in some physiological gamble, can suddenly hit pay dirt. I was galvanized despite my inability to do anything but sleepwalk through the days.

Because of my toothache, my doctor insisted Lyme was unlikely and the balance problems and neck pain were due to a tooth abscess (I later learned that Lyme can cause tooth pain that shoots up the trigeminal nerve). He felt that an abscess could also explain the chills I was starting to get at night. My severe heart symptoms were much worse again too, and I rarely had an hour when death didn't feel acutely present. He increased my dose of Amoxicillin after a temporary experiment with Doxycycline that made my toothache and heart symptoms worsen. He reluctantly agreed to Lyme testing through Igenex lab.



If you're wondering why I did not run out and get a second opinion or go to a hospital, it's because I have severe multiple chemical sensitivities (MCS) and I was conducted the aforementioned business with my doctor over the phone. Having MCS pushes me back into 19th century medicine due to a complete lack of chemical-free and fragrance-free medical services in this country. The doctor I'm speaking of is the only doctor I can find to do home visits. It took another month before I convinced an old hippie dentist recommended by an MCS friend to come to my house and check out my tooth on the porch.

A few weeks after I found the tick bite, I found a reddish plaque on my lower back but it wasn't a classic bullseye rash. Apparently, only about nine percent of the Lyme rashes now have the bullseye (or erythema migrans) shape. I was starting to get pain in my joints, heels, and the soles of my feet. My doctor had gotten the test results and told me in a crisp voice on the phone that I didn't have Lyme and could stop worrying about it. I asked him for copies of the tests but, when I got them, was so spaced out I put the unopened envelope in another room and forget it was there. My doctor kept prescribing antibiotics for the tooth pain and for my cardiac symptoms, and I cared about very little at that point but staying alive. In August, the dentist showed up with a big beaded earring dangling from one ear but did not find any signs of a tooth abscess. I was too exhausted and cognitively impaired to even think about digging out the test results myself until around September. That's when I saw my Immunoflourescence Assay (IFA) for Lyme was positive, and that my Western Blot test had enough positive bands that most LLMDs would render a positive diagnosis (July was too soon after the tick bite to expect a positive WB, but a positive IFA is considered highly accurate). My doctor had overlooked the obvious diagnosis of Lyme disease, even after I pointed at it with a huge neon arrow. My later Western Blot, as I mentioned, was also positive.

By the second week of September, I was indescribably ill. My chills had turned to gripping shakes, my cardiac symptoms were off-the-charts bad, and I was so convinced I was going to die I used a simple template for a will I found online to scratch out my intentions for my literary estate. I begged my doctor to give me something stronger, even though he still did not believe I had Lyme, and he prescribed the post-9/11 superstar antibiotic Cipro. Cipro pulled me back from the white-knuckled edge. Within a few weeks, miraculously, Cipro loosened the iron grip on my heart, and I was able to sit up or prop myself up on pillows for periods of time – for the first consistent stretch in over three years. Cipro also gave me the energy to look over my tests, and I saw the unmistakably positive IFA and positive Lyme-specific bands on the WB. After much searching around, I found a Lyme literate doctor (LLMD) willing to consult with me. This new doctor quickly diagnosed me with Lyme disease based on my symptoms and test results, and told me she was fairly sure I also had babesia and bartonella, two common coinfections.

Getting a positive test for babesia and bartonella (which the Lyme community calls "Babs" and "Bart" as if talking about a Fifties homecoming couple) is very complicated, as there are many varieties of each that don't even have lab tests. There are approximately ten American human varieties of bartonella and thirteen of babesia but the tests only cover a few of these. Because bartonella is notorious for causing (frequently lethal if left untreated) cardiac infections in the immune-compromised, and is the only organism of the three that responds well to Cipro, my LLMD concluded bartonella was the most likely culprit in my heart, especially given my other bartonella-specific symptoms such as pain on the soles of my feet. I had probably been infected with it when my cardiac symptoms started, and the Lyme this past summer was most likely a reinfection. Even Dr. Skeptical admitted that the Cipro was treating an infection that seemed to be affecting my heart. If I hadn't found my way to antibiotics that helped my heart, I don't know where I'd be now, if I'd even be alive. From the deepest wisdom of my body I can soberly say: I doubt I would be writing this. Both Lyme and bartonella carditis can be fatal.

Repeated infections with Lyme and its coinfections are not uncommon, and one might acquire different strains of Lyme or new coinfections with subsequent tick bites. One recent study found a recurrence rate of 3-28 percent of Lyme in endemic areas, and found substantial evidence that most of these recurrences were due to reinfections with new ticks. There are probably genetic susceptibilities as well. Bernese Mountain Dogs, for example, are freakishly susceptible to Lyme when compared against similar breeds.

The coinfection conundrum surely does add fuel to the reality that more CFIDS cases than expected may actually be chronic Lyme coupled with other infections. There has always been quite a bit of jumping back and forth between the CFIDS and chronic Lyme communities, and until recently I believed Lyme was just another of a slew of infections that CFIDS patients often tested positive for, along with HHV-6, CMV, various mycoplasmas, chlamydia pneumonia, and others. Some CFIDS patients I knew came back positive for Lyme years into their CFIDS diagnoses and began identifying as Lymies, relinquishing their former identities as PWCs. I felt vaguely betrayed by them. Lyme patients, as bad as they had it, seemed to possess the privilege of those with known causal pathogens – something CFIDS patients didn't have. I knew a little bit about Lyme politics – and had ordered Michael Christopher Carroll's book, Lab 257: The Disturbing Story of the Government's Secret Plum Island Germ Laboratory, about the infamous Plum Island germ lab on Long Island that is said by many to have disseminated Lyme. I already had a peripheral fascination with the government's interest in chronic-illness-inducing zoonotic pathogens as biowarfare agents, and my aforementioned ex-partner had gotten ill with Lyme on Long Island so her proximity to Plum Island intrigued me. With further reading, I now know the history of Lyme eerily parallels the kind of stuff in CFIDS exposes like Osler's Web and The Extremely Unfortunate Skull Valley Incident: government cover-ups, corruption, beloved doctors under threat, and the flat-out denial of the existence of the sickest patients. The difference between CFIDS and Lyme is a stirring sense of hope in the Lyme community, because there are known pathogens and known treatments – if one is lucky enough to get properly treated. But there is also righteous anger and plenty of suffering.

Ultimately, patients with chronic Lyme, just like patients with CFIDS, are in hell, fighting for their survival and livelihood. Lyme is still treated by most doctors as limited and easy-to-eradicate. Patients who progress to chronic Lyme are largely ignored, or their existence officially denied. As Dr. Daniel J. Cameron wrote in a letter to The New England Journal of Medicine this month, there is a decided publishing bias toward researchers and clinicians who don't believe in chronic Lyme or long-term antibiotic treatment. "It is time the medical community acknowledged Lyme disease as another example of 'clinical equipoise' – an absence of consensus within the clinical community – and established publishing standards accordingly," wrote Cameron. Meanwhile, Lymenet is full of horror stories about mothers passing Lyme on to their babies, with pictures of adorable children taking antibiotics with sippy cups. Lymenet is quite educational about this elusive beast only pioneering doctors really recognize. The threads have ominous titles like, "Just woke up from coma," "Lyme obituaries," and "PICC line infected again."

Personally, my greatest education has been around the issue of coinfections. A large percentage of chronic Lyme patients are infected with babesia, ehrlichia, or bartonella. A tick can be infected with numerous pathogens, including rarer ones such as tularemia, rocky mountain spotted fever, and relapsing fever, and transmit them all in a single bite – significantly increasing the likelihood of a protracted and severely debilitating illness. Since the treatments for coinfections may involve stronger antibiotics, antimalarials, or other altered protocols, the coinfected patients often receive ineffective treatment and relapse into new waves of mysterious symptoms. As Dr. James Schaller, M.D. prophesized, "The year 2007 will mark the death of the expression 'co-infection,' because increasingly patients have awareness that Babesia and Bartonella are not little addendums to Lyme disease, but are often far more serious than Lyme disease. Any physician who is not well-versed in these two killing infections will not be competent enough to treat patients with flea and tick infections. These infections do not circle around planet 'Lyme' like small moons, instead, they are their own huge planets that cause massive consequences to the human body."

Tick borne illnesses are increasing dramatically as the medical establishment lays on the grass with inaction and the bugs continue to breed. The CDC reported a 40 percent increase in reported Lyme cases from 2001 to 2002, for example. That's a massive leap. In Massachusetts, as evident as the epidemic seems to be, most doctors seem fairly ignorant about proper testing, and Lyme literate doctors are very hard to find. Someone I know with CFIDS and MCS contracted Lyme last summer, as did a sick friend last Spring, and another MCS friend the summer before (and her dog). I know of a young man who was given a serious psychiatric diagnosis after sudden onset symptoms, yet his doctors did not think to test for neurologic Lyme, which can cause transient schizophrenia and other psychiatric phenomena once it invades the brain. It's horrifying to think how many people are ignored, iced out, or even institutionalized because the pinhead-sized tick in the haystack is just too small to be a suspect.

Meanwhile, as I lay finally-not-dying (I hope), I'm undergoing not just migrating cognitive problems, but a paradigm shift. I'm struck by the fact that, even after having CFIDS for so many years, I can experience new varieties of fatigue, pain, cognitive problems, and other familiar symptoms I thought I knew so intimately. It just goes to show how broad the physical landscape is, and how narrow it's lexemes. I hesitate to use the word "fatigue" anyway, since I'm really talking about a level of neurological, intracellular, and deep-tissue pummeling that most people never experience. People with CFIDS have long referred to fatigue as "the F word" because of how it has been misused against us. But if the other F word can mean so many individual things, why do we insist on narrowing all physical experience to such a limited questionnaire of medical "complaints" that rarely lead to the gestalt of an experience?

As I type this, the battles known affectionately as the "Lyme Wars" rage on. The warring camps are the Infectious Disease Society of America (IDSA), which maintains an establishment viewpoint that Lyme is a discrete illness easily treated by a short course of antibiotics, and the International Lyme and Associated Diseases Society (ILADS) which holds that Lyme is a complicated illness with unreliable testing and the need for long-term aggressive treatment strategies. Many patients are perplexed why our government agencies stick to the IDSA agenda, and they speculate that insurance companies fear the cost of long-term antibiotic treatment. But it's actually more than neglect, since physicians who treat chronic Lyme patients with long-term antibiotics are not simply ignored, but censured. The most recent case of this is Dr. Charles Jones, a beloved Lyme pediatrician in Connecticut who is being dragged into court by the Connecticut Department of Public Health on charges that he treated patients deemed "low-risk" for Lyme disease (some with a history of known tick bites) with antibiotics. This would make sense if the man was a crook, but his patients love him so much they are raising funds for his medical defense, showing up in court to support him, calling him a saint, and sending him fruit baskets. This battle is not just about insurance companies restricting long-term antibiotic use. If Jones were a dermatologist prescribing tetracycline to acne-ridden teenagers, I don't think any of this would be happening.

On the flip side, the visibility of children with chronic Lyme, or the deaths of teenagers with Lyme, would be terrible PR for the IDSA.

Many people find it hard to believe the government might intentionally squelch the facts of an epidemic, but this idea is old hat to CFIDS patients. We witnessed the foot shuffling and misappropriation of research funding and outright mockery around our illness for decades. Still, it's hard not to turn to the powers-that-be for help when so many are suffering. I find it fascinating and ironic that a patient written up in Southern Medical Journal whose Lyme had crossed the blood-brain barrier and who began, as a result, to hear incessant musical hallucinations, heard only patriotic music – when so many official agencies deny the life-altering severity of neurologic Lyme. But without borders we are too permeable, no longer immune: this goes for national borders as well as the brain's borders.

I have an unusual perspective now, traversing the politics of three maligned illnesses so that I can see the patterns of disbelief and neglect, as if I'm watching them from an air ambulance. Because of this, I don't foster many illusions that either medicine or government is necessarily out to protect me. Our country, after all, has a deep history of medical experimentation on non-consenting subjects. It wasn't that long ago that spirochetes were studied non-consensually on poor black men in Alabama, in the form of the Tuskegee Syphilis Experiment. Many have written about the military industrial complex's ongoing fascination with incapacitating illnesses, with more investigative thoroughness than I can't muster up right now. In World War II, for example, brucellosis was studied by the military because of its known ability to cause chronic disability. The authors of The Extremely Unfortunate Skull Valley Incident support an argument that military brucellosis research could have been linked to the emergence of CFIDS (and brucellosis can also be spread by ticks). The borrelia genus of bacteria, which encompasses Lyme disease, was studied by Unit 731, a notoriously sadistic Japanese biowarfare experiment station in WWII. Soon after that, the Plum Island Germ Laboratory was founded as a lab to study zoonotic diseases that could be used as biological weapons against the food supply. It was criticized for poor safeguards and controls, and accused of releasing some of these zoonoses to the human populations along the eastern seaboard, particularly Lyme disease. Lab 257 contains an alarming map that shows bird migration patterns from the lab to the primary epicenters of Lyme in the Northeast. Carroll writes, "You can pinpoint cases of Lyme disease on a map of the United States by drawing a circle around the area of largest infection. Now you can tighten that circle until a single point is reached. That point? Plum Island. Spokes radiate outward from this point and pass through neighborhoods boasting the highest rates of Lyme disease contamination in the nation."

Tick-borne co-infections have been biowarfare favorites too. Take Q Fever, or coxiella burnettii, a pathogen once tested on Seventh Day Adventists by the government, as well as at the infamous Ft. Detrick testing facilities in a project known as Operation Whitecoat, which also tested tularemia. This is declassified information, so the U.S. Government had an admitted interest in Q Fever as a biowarfare agent, and even somewhat carelessly played with it – although Q Fever (Query Fever) is one of the most infectious diseases in existence, and has been researched in Australia and Croatia and Japan and the UK for its ability to produce a long-term illness that meets the diagnostic criteria for CFIDS. One can get Q Fever from a single bacterium, and coxiella burnetii can live for long periods of time in dung or wool and be spread by wind, giving it the type of potential America's forefathers saw in smallpox and blankets.

Our nation's medical atrocities resemble the maneuvers of a batterer who is both charming and malevolent, following the classic three-stage batterer Cycle of Violence. In the "tension building stage" there are cold wars and stockpiles of biological weapons. In the "explosion stage," the Atomic Energy Commission tests radiation on non-consenting human subjects. In its "honeymoon stage," someone issues an apology for the horrors of the past, puts together a website or hands out antibiotics, and promises it will never happen again. Then, as the snarling lip of tension building begins to overshadow the fragile honeymoon, the brain continues to pledge allegiance. And allegiance, in its own way, is pathogenic. I think it is naïve to assume the cycle won't continue, that it isn't continuing right now.

Of course allegiance to truth is another story, and we all owe ourselves that, along with an ounce of prevention against these illnesses that are so easy to deny. I hope as I lay down these words from my snow-globe-shaken-brain, I can at least offer a little of that.

---

Author's Note:
This is not intended as medical advice and I am not a physician. Also, my brain is pretty wrecked, so though I've fact-checked as carefully as possible, I certainly would love to hear feedback about any misprinted or contested facts.

A concise explanation of the Lyme-biowarfare history can be read here and here.

There is a great deal of controversy about the way Lyme is diagnosed. For more on this, please visit and download the guidelines from the ILADS here and read Dr. Charles Crist's opinion on how to interpret the Western Blot here.

Graphics are by . . . me! Peggy Munson! Please do not reprint or reproduce any of this without permission.

I had on a peach rayon dress under the black robe and I was about to address the class of 1987. It was my idea for the three valedictorians to talk about the past, present, and future. Rob, whose best friend had died several years before of a rare disease, covered the past. He and I emailed years later about his lymphoma and my CFIDS (we both got sick in our twenties) but first my friend Kim was talking about the present. There were over 400 kids in cap and gown and at least a thousand people in the bleachers and I was terrified to stand in front of them and talk about the future. I had such severe stage fright, in fact, that I had been liberally using over-the-counter sleeping pills in the months before. My hair was big and lacquered that night.

My sister once talked about how she never saw adulthood as some great thing. We both felt a sense of dread about it. I was uneasy that night, as if I knew the cliff in front of me – knew it like a Wile E. Coyote who has scouted ahead to discover the angry anvil's possibilities.

I hadn't spent much time outside of Illinois, but was tired of the etherizing hum of crickets and cicadas and the flatness that was an unending taunt. The soil was rich in McLean County, and there was a palpable sense in Normal, Illinois that roots were still possible. Most of my high school memories involved driving, usually in grid patterns as if we were the worker insects, knitting something larger and never getting to enjoy its warmth.

People have been emailing me about my 20-year high school reunion but I can't go. As swiftly as I ran away from home to a radical hippie school in Ohio, fooled around with boys and girls, rode my Trek touring bike to peach stands, spent a month on a commune weaving hammocks, skinny dipped in a murky pond, and burned my eyes on poetry by geniuses, I got sick. Axioms aside, I couldn't go home again: I became too debilitated to make the trip back to Illinois.

Shannon wrote me last week. She was a brainy, pretty blond girl who seemed unstoppable. She spent a magical, life-changing year in Japan back then and told me everyone wanted to touch her hair. Now she travels to Africa for her work. As the only other out queer person from my class that I know of, she was conflicted when she read her yearbook inscriptions: "I came away with this odd sense of wondering, who the heck was I anyway? I only vaguely recognize myself in the words that others wrote to me."

My classmates must have known I was a psychological expatriate, because they wrote lines like: "Let me know what kind of wild, consciousness-expanding experiences you run into. Just don't go off and disappear into some Indian cult." And: "With our luck you'll be the first lady Pres. Good Lord what a country we'd have then." And: "You are deep, sensitive, warm, and alive. I will miss you. What an impact."

Reconnecting with Shannon was amazing. I didn't know any queer femmes in high school and didn't know I was one. My life has often felt like a magician's box, my body cut into three identities. I have my early, earthy embodiment, my college coming-out queer self, and the self who got sick at age 23 and rapidly became disabled. "It's important for us to have congruency," said my college friend on the phone yesterday. But she lives in the neighborhood where she grew up – a hip, culturally-enlivened place. It's different for those of us who are puzzled by split selves.

For me, these feelings are compounded by literal exile. Not only am I too ill to travel, but Illinois is too poisoned by chemicals to be a life-sustaining atmosphere for someone with severe chemical sensitivities. Last year in Massachusetts, the state decided to spray aerial pesticides over 120 miles away from my house, and the drift apparently caused my blood to turn black with a condition known as methemoglobinemia, a chemically-induced state where the blood can barely transport oxygen to the tissues. People with MCS can get a lot sicker – even die – from pesticide exposures. Dr. William Rea, who founded the Environmental Health Center of Dallas, told me that black blood from distant pesticides was something he had witnessed numerous times in people with MCS. The chemical industry – just like the cigarette corporations in past decades – maintains its own "research" institutions, legal teams, and PR spinners to make sure such stories of chemical canaries don't leak out. The chemically sensitive are, with Geiger bodies, too much of a scary harbinger of the future.

The future: I had no idea what it would be when I prattled on with my chemical-laden perm about the next phase in our lives. Now I am the future: symbolic, catastrophic, and drifted far from home.



In Illinois, it is impossible to get any distance from agricultural chemicals. Most members of my high school had a familial connection to farming or belonged to the Future Farmers of America. Willie Nelson's Farm Aid played its first concert just an hour from my hometown in 1985. In my high school years, the breadbasket was bought out by Agribusiness. Farm Aid has raised 30 million dollars to date to promote a family-farm based system of agriculture. But such homegrown efforts are up against monstrous forces.

It's hard to describe what a spiritual waste this is for those of us who grew up in Illinois. To most people, the landscape seems unremarkable, but it's the very spaciousness, the vacuity, that gives it a monastic holiness. As Thomas Simpson writes: "'Vacant' land, 'pragmatic' land, 'unmitigated' land, but land with a steep melancholy to it; these are truths of Illinois landscape, but not the kind you'll hear from a tourist office. Our writers describe how landscape shapes our character in ways we never notice. 'Rural Mid- westerners live marooned in a space whose emptiness starts to become both physical and spiritual,' argues David Foster Wallace in an essay about growing up in rural Champaign."

Indeed, as I addressed the Class of 1987 about the future, I felt my physical vulnerability as a visceral shiver. "In a land where you can see from horizon to horizon," Simpson continues, "where an apple core tossed on the ground can shortly sprout an apple tree and then an orchard, where we can justifiably describe certain January skies as 'literally leaden,' here in Tornado Alley we residents of Illinois may be inclined to a peculiar awareness of ourselves in relation to timeless and uncontrollable forces." In art class my senior year, one of the most beefy football players in school had sat next to me and painted nothing but fragile-looking watercolor barns. Even the most solid of us knew how easily we could topple.

I don't know why I got sick at age 23, but certainly the forecast for my chemical body burden was damning.

Ten years after I graduated from high school, Sandra Steingraber published her eco-expose, Living Downstream. Steingraber was diagnosed with cancer in her early 20's while she was a student at Illinois Wesleyan University in Bloomington, IL – Normal's twin city. She later gathered extensive data on pesticides in Illinois, and the statistics are mind-boggling. Eighty-nine percent of the land mass is agriculture, and ninety-nine percent of that agriculture uses pesticides. Only one out of ten steps in Illinois lands on uncontaminated ground. "A lot goes on in the 11 percent of Illinois that is not farmland," writes Steingraber. "Approximately fifteen hundred hazardous waste sites are in need of remediation – a list that does not include several thousand pits, ponds, and lagoons containing liquid industrial waste. And each year Illinois injects some 250 million gallons of industrial waste – which, until recently, included pesticides – through five deep wells that penetrate into bedrock caverns."

Organic Style Magazine later compiled data to rank the toxicity of 125 American cities. The two most toxic cities on the list – worse than New York or Los Angeles – were Chicago and St. Louis. If you draw a line between those two cities on a map, spanning a five-hour drive, you'll find my hometown smack in the middle. For me to move to Illinois, even if I could, would be like a kid with a peanut allergy moving into the Jif peanut butter factory.

Still, I can't convey the haunting, preternatural beauty of the sprawling fields. When I think about the environmental destruction of the Midwest I feel a deep regionalism, and anger at the corporate colonization of what used to be a vibrant landscape of tallgrass prairie. I have lived in states that pride themselves on environmental policy, and I have heard residents make derisive comments about the environmentally "backward" parts of the country – typically, in their eyes, the Midwest and the South. They rarely examine the economic forces behind environmental degradation or see their eco-purity as a facet of economic privilege.

Another person from high school I reconnected with was Teague, who experienced his own minor exile from our home state due to illness. His family moved him to Arizona before the end of high school because of his asthma, and the move in his case led to substantial health gains. Like me, Teague couldn't wipe the prairie out of his mind, and featured it in his aptly-titled first novel, The Pull of the Earth, which the Denver Post described glowingly as "a deceptively rich tale of contrast and continuity" set in Illinois. My forthcoming book of poetry, Pathogenesis, likewise features the Illinois landscape, often depicted in prairie plants largely decimated by agricultural intrusion. "I am sure the panic grass has a language of gestures," one poem begins. "I am sure the wild horses of forced surrenders/have run and bled in the knives of green."

If I could, I would travel back to Central Illinois because I believe there is timelessness there, maybe a local antidote. David Foster Wallace compares dusk in Illinois to a fugue state, where the landscape becomes "hypnotic, a mental state at once flat and lush, numbing and yet exquisitely felt." This hypnagogic experience is surely more than a kindled limbic system poisoned by Atrazine, but something as profound as I remember. I didn't know 20 years after giving a valedictory address about the future that I would be living with a futuristic illness, but I don't regret that Illinois soaked into my skin, or that I wandered in a near-psychogenic fugue of bodily degeneration before landing in the woods of Western Massachusetts. The Prairie is known for its ecology of rapid change. When Illinois was covered in tallgrass prairie, the landscape would alight in fierce, roaming fires called "The Red Buffalo" by local tribes. This was an essential part of the prairie ecosystem: the prairie had to burn to the roots to re-grow and thrive.

So here I am, Class of 1987, burning down to the roots to regrow. I hope to see you all in 2027.

---

My 20-year high school class reunion takes place on October 20, 2007

The September 2007 ssue of Curve, "The Nation's Best-Selling Lesbian Magazine," includes a review of Origami Striptease! It is also this month's Editor's Pick.

From "In the Stacks"

Origami Striptease
Peggy Munson
(Suspect Thoughts)
Munson's erotic lyric novel (written largely in iambic prose) is a seductive, often raunchy fantasy of the disarming effects of love and trouble. When Munson's unnamed narrator, an erotica columnist in exile, meets the enigmatic Jack, her world and the book's sense of narrative convention seem to split apart into both a strange and an intuitive territory. Lovers say things such as "You're marvelous. You've like a stolen painting," or "Your body is an ice hotel" (to which she replies, "I've never been to Greenland, but I knew that it was there"). The most provocative element of the novel, though, is its frank use of chronic illness (Munson has been outspoken about her struggle with both chronic fatigue syndrome and multiple chemical sensitivities syndrome) as Munson's characters struggle to define themselves in a toxic world. (suspectthoughts.com) -- Julie Bloch

Switchback Books, who will publish my first book of poems, Pathogenesis, in early 2008, just posted their favorite poems from my forthcoming book! Check out the new poems!

Check out Sins Invalid!

I'm highlighting this upcoming event as the topic is so important (revolutionary?) and I'm so pleased my work will be included.

Here is a description: "Sins Invalid invites a re/view of embodiment, with performers and video artists stripping taboos off of sexuality and disability. A performance event revealing poetic bodies and hot activism, it is a healing for all who challenge themselves honestly when unearthing their sexual expression. Expect to hear an unabashed claim of desirability from the unexpected."

This This year's event is going to be so HOT and includes:
Lisa Thomas-Adeyemo, Solidad DeCosta, Seeley Quest, Lateef McLeod, Lezlie Frye, Maria Palacios, Todd Herman, Peggy Munson, 'ron daniella anglon, Roopa Singh, Noemi Sohn, Loree Erickson, Ron Jones and Todd Herman. Check out the website and promo trailer.

It hasn't been easy getting our culture to appreciate the erotic of people with disabilities, or -- perhaps more importantly -- how those deeply attuned to their own bodies and the transcendent potential and limits therein could add theory, creative thought, and incredible originality to the cultural dialog around sex. A few years' ago, a friend and I (both disabled) submitted two stories each to erotica anthologies. We each had one story with a disabled character and one with a super athletic character having sex, and in both cases our super athletic character stories were chosen for publication and our stories with disabled characters were rejected. Time and again, in fact, we've had similar experiences, but events like Sins Invalid are helping to shift the tide by depicting brilliant, sexy, mind-bending work by people with disabilities. My revenge with the above story fiasco was that my super athletic sex story featured characters having sex while rappelling, which my soldier consult said would actually cut off circulation!

For more of my comments on sex/disability, check out this interview I did on the topic with Susie Bright.

Erotica Revealed Review of Origami Striptease
"This book reads like poetry and left me stunned with writer's envy."
(This review is kind of a plot spoiler but interesting! Be warned)

Queer life News: "Are You Queer Enough?"
"On April 12, 2007, eight Lambda Literary Award finalists were scheduled to read at the San Francisco Public Library. Only seven shared their work. Finalist Peggy Munson, in the Lesbian Debut Fiction category, was excluded from this event – without warning, without just reason, without apology.Why would one author be prevented from reading her work at this queer event? Bottom line: the organizers of the event policed her sexuality."

Rainbow Network Review of Origami Striptease
"To say the language is rich and luscious is an understatement. The author creates a fantastical landscape for her characters, with a carnivalesque sense of magic realism that is full to bursting with imagination."

Along with my super-fabulous publishers Suspect Thoughts, I have joined the amazing skirt-sassy poets at Switchback Books to publish my first full-length collection of poetry, due out in early 2008! Here's the announcement from the Switchback Books Blog:

Announcing Peggy Munson as Switchback's third poet

Please see our call for work listed below about Switchback's new anthology, but in the meantime, we just couldn't wait to announce our next solicited poet, Peggy Munson. We will be publishing her manuscript, Pathogenesis, just in time for AWP in NYC next year. We are absolutely thrilled to be working with Peggy and want to welcome her on board!

Peggy Munson is the author of the novel Origami Striptease, a finalist for the Lambda Literary Awards. She also edited the anthology, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome. She has published in such places as Best American Poetry 2003, Literature and Medicine, Marginalia, the Spoon River Poetry Review, Sinister Wisdom, 13th Moon, Blithe House Quarterly, Lodestar Quarterly, Margin: Exploring Modern Magical Realism, Best American Erotica, and the San Francisco Bay Guardian. Peggy has also been a fellow at the MacDowell Colony, the Ragdale Foundation, and Cottages at Hedgebrook.

Pathogenesis was a finalist or semifinalist for numerous prizes including the Dorset Prize, the Carnegie-Mellon Poetry Series, the Beatrice Hawley Award, the Verse Prize, and the University of Wisconsin Pollack Prize. Bay Windows described Peggy as a "master of the written word," and Rebecca Brown dubbed her a "stylist extraordinaire." An Illinois native, Peggy now resides in the woods of Western Massachusetts.

Congratulations to Peggy!

"Munson deftly experiments with gender, linguistics, and style."
-- Heather Cassell, Bay Area Reporter


It has been a big media week in the aftermath of the the Lambda Lit. Awards censorship scandal around my book. Oh, the drama!

~ o ~

Heather Cassell of the Bay Area Reporter covered the story in this week's issue. Read about it here:

"Members of the LGBT literary community were in a fluster after they learned that disabled queer author Peggy Munson was omitted from a Lambda Literary Foundation finalist reading program. . . "

~ o ~

Then, the fabulous Rachel Kramer Bussel interviewed me for the fabulous site, Feministing! Read the interview here.




Feministing! Logo

"Munson explains via email just what 'iambic meter' is, the connection between identity and language, why she's been 'buoyed' by the queer writing community in the wake of having a video of her reading from her novel censored from a Lambda Literary Award finalist reading (Origami is up for Best Lesbian Debut Fiction), and pushing the edges of the queer literary canon 'to its breaking point. . . .'"

~ o ~

Finally, Heather Cassell of the Bay Area Reporter reviewed Origami Striptease. Click here to read full article.

"Erotic writer Peggy Munson takes readers into a queer femme's surreal world of disability, illness, lust and love fucking boys with 'detachable penises' in her novel Origami Striptease, a Lambda Literary Foundation finalist for lesbian debut fiction. The violently poetic novel explores the complexities of desire, disability, gender, lust and love from a disabled queer femme's narrative. The narrator's voice is strong through the waves of illness that embody the lyrics of her iambic prose. Munson forces the reader into the narrator's world, stifled in the limitations of her body, illness, and desire for boys: butches, trannyboys, and daddies who force her to succumb to erotic passions. The passions flow in sordid detail."