Sunday, December 14, 2008

The Ice Storm

I know this ice storm in New England was potentially lethal for everyone, but the past few days were harrowing for me. I turned 40 on Wednesday, and on Thursday night the power went out – and stayed out for almost 48 hours. The temperature was around 15 degrees Fahrenheit or less at night and for much of the day, and my life turned into a Jon Krakauer novel very quickly. With multiple chemical sensitivities (MCS) everything is inaccessible (so if you’re an EMT, firefighter, hospital worker, M.D., nurse, or shelter worker, think about this). Calling 911 is generally out of the question, emergency rooms are full of toxic cleaning chemicals and scented people, and the carbon monoxide from generators or the toxins from wood smoke can be particularly dangerous or lethal (and hotels: forget about it). Because I was weak and sick going into the outage, I was suddenly like that guy in Into the Wild – picture the end of the movie version of the book – who has eaten the poisonous seeds by accident and thus orbiting around this tiny space, trying to stay warm, totally screwed. Fortunately, the power is back on, and I made it out alive. I might post more of the story at some point, but right now I’m just waiting to hear from some other sick friends who are in other parts of Western Mass. and don’t have power and/or power and phones. I just want to remind everyone to think about vulnerable neighbors this Winter, and don’t assume people don’t need more help. The kindness, action, and advocacy of both friends and strangers got me through the past couple of days (and I can't thank them enough), but it was pretty hairy for awhile, and I know how easily people’s needs can be forgotten when the world assumes that everyone can get to a shelter, hospital, or friend’s house. This video was shot some distance from where I live, but it depicts pretty much what the scene looked like here (I can’t find much footage on YouTube from W. Mass., probably because people are just getting their power restored). Beautiful, awe-inspiring, and scary:



Lots of trees and tree branches were blocking the roads in W. Mass.:

Saturday, November 15, 2008

The lovely Susie Bright interviewed all of the authors of her new anthology, X: The Erotic Treasury, which is a very sexy coffee table book in lush packaging that has come out just in time for the holidays.

Here is the interview Susie did with me!



Peggy Munson
"Fairgrounds"
http://www.peggymunson.com/

Have you ever won an award for any of your talents?

I was a finalist for the Lambda Literary Awards in Lesbian Debut Fiction -- then censored by Lambda because my work was dubbed "too straight."

I also won the spelling bee in elementary school, ultimately choking on the word "gangrene" at regionals.

Tell me how you would cast the film version of your story... just for fun!

Lead Girl: Chloe Sevigny
Daddy Billy - I would do a cattle call for a gruff no-name butch stud
Octopus Man - William H. Macy
Octopus Man's Girlfriend, Cherry - Kathy Bates, wearing something spandex-y from Target
Octopus Boi - Rufus Wainwright playing a disabled tranny boi
Random Carnies - Other Wainwrights

What kind of reactions have you had to your story? It apparently became a big deal on a locked bulletin board for amputee fetishists...

As far as I could tell, amputee fetishists were doing untoward things with prosthetics while rolling around on a giant Braille scroll of my story -- or something like that (sadly, I never got in either)!

As for reactions, someone turned the story into an incredible dirty poem. It was translated into Italian. I performed some similar work by video later at a couple of disability-focused erotica events.

What is your own life "in the circus"? Did you like carnivals as a child?

My own experience with carnivals looked a lot like David Foster Wallace's essay on the Illinois State Fair.

Those Illinois fairs (the McLean County fair, the Kroger parking lot fair, the annual Corn Festival) spelled out my budding erotic: mostly the image of the 4-H tent with its neat stitches and carefully hemmed adolescent desires swirling around absurdly delicious cakes and then abutting the swine tent with unapologetic grit and dropped corn dogs covered in Carny cigarette butts. My whole erotic feeling is something akin to picking up the dropped corn dog, taunting the swine, eating as much cake as possible, then letting out those so-perfect seams.

What's so hot at those fairs is the sense of hemmed chaos that is about to break, as the footpaths get rutted and muddy, the carnies lose their patience and do sadistic things with ride gears, and the cut-off jeans get snagged on teenage lust.

Do you hear from people saying, "Oh dear, you're making our oppressed minority look bad, can't you be more sensitive...." or is that era over?

Frankly, I don't think disabled folks ever even got enough recognition to get on the p.c. radar.

I took a course at Oberlin called "Theorizing Race, Class, Gender, and Sexuality in Contemporary Capitalism," where we sat around in a circle talking about the intersections of our so-called oppression— but disability just did not exist.

Disability has always been in a fringe space, fringe mainly because it is all about the body and all of the aspects of the body that freak people out. So disabled people usually don't get worked up about radical sex because they are used to their bodies being put under the most literal microscopes, poked and prodded and subjected to telethon-esque social freak shows. Even the conservative disabled bodies are just, on some level, living a queer sexuality.

So when someone comes along and writes about disabled bodies seizing pleasure, disabled folks are generally psyched about the visibility and the notion (not often shared by social institutions) that sexual pleasure is their birthright.

In contrast, even the most open-minded sex radicals sometimes flinch at the idea that some people find prosthetic legs as hot as prosthetic cocks, insane levels of transcendence can bloom out of physical restrictions, and injured young veterans are damned well going to fuck their girlfriends when they get out of the rehab hospital.

I was just re-reading a 1999 essay by Patrick Califia in which he talks about how, when he became a sex writer with an acquired disability, people were "so overwhelmed by cognitive dissonance because of my disability that they've literally tried to take the cane away from me."

Do you think limited mobility and kink have any special understanding together?

This is a fantastic question -- and yes! I was thinking about how, with an illness characterized by immobility, it's so hot for me to hear a partner snarl "hold still" or "don't you dare move" — or even just to move my limbs around like a ragdoll.

It's something about recognizing all of the receding corners that are in a person --whether those are dark fantasies, literal parameters, or limits that can be pushed a little bit.

Lovers who never fuck in rote mode, who just learn where the lines are and exactly how to thrill on those tracks, are the hottest lovers ever. Plus there is the inherent social queerness of disability that just makes it kinky. There is also a discipline that can come out of sex with a disability, a honed Zen-like awareness.

Imagine you have pain all over your body, and what it means for a lover to just run a finger along the one place you feel pleasure, the increased valuation of that pleasure in contrast to your daily life. Disability also often forces reinvention, which can just make even the most placid activity kinky.

I have had to study all of the textures of stillness. Lovers have appreciated both how embodied I have to be because I have to stay attuned to my physical status, and how non-literal I am about the body at the same time, because I'm used to adding and subtracting extensions to the flesh in all sorts of ways.

What comes to mind when you consider your ancestors?

My aunt did some genealogy and found abolitionists as well as Amish in my family tree, which explains why I think this Amish tradition called "bundling" is really hot (it involves lying with someone under a quilt and seeing how long you can resist temptation).

My recent ancestors on Mom's side were Germanic farm stock, John Deere to the marrow, and I grew up the youngest grandchild of some huge farm families that had amazing. My Dad was part of the local media (with the morning radio drive time shift) before everything went corporate. My aunt worked as a criminal pathologist at the LA County Coroner's Office, which handles most of the famous Hollywood autopsies, and this always brought a freak element to holiday dinners, when it wasn't unusual to hear about an autoerotic asphyxiation case while Grandma was dishing out mashed rutabagas.

Wednesday, October 22, 2008

The candidates are talking about it, the pundits are talking about it, everyone is pointing fingers and assigning blame, but it turns out Billy Joel was right – the epicenter of the problem is somewhere near Allentown, PA. Yahoo News reports that Elizabeth Feudale-Bowes, aka the woman in "the bubble," is causing real estate values to tumble in her neighborhood, creating a ripple effect that is scarring the whole nation.

Feudale-Bowes lives in South Whitehall township in what looks like a modern steel-and-porcelain shed, not so different from what you would pay a hefty sum to purchase if you were buying it from a hipster shed company such as MetroShed. Granted, her accessory dwelling has a little bit of a 4-H agricultural tent feel to it, but the environmentally-safe 160-square foot residence is more aesthetically pleasing than most safe dwellings I have seen (and certainly most dilapidated sheds). Paranoid neighbors are terrified that Feudale-Bowes living space is "unstable and so unsightly it could drag down their property values" and thus a judge has ordered her to tear it down by the end of the month, citing permit violations.

What was the name of that 4-H animal that was smeared with blood and sent to the edge of society to repent for their sins? Do these neighbors not realize their property values are plummeting for reasons other than a sick woman living in a structure slightly bigger than an animal pen?



Feudale-Bowes has environmental illness, aka multiple chemical sensitivities. She was diagnosed by the nation's preeminent MCS specialist, Dr. William Rea – a man so heroic that, like many doctors with MCS, he has been living under threat of having his license revoked. Many people with MCS appreciate Feudale-Bowes shantytown style of architecture, since they spearheaded the green shabby chic movement that has been co-opted by many small-scale green builders. A number of people with MCS in fact live in makeshift structures in a makeshift community outside of Dallas, for the sole purpose of seeing Dr. Rea for medical care. Their "homes" are typically old pull trailers that are lined inside with many coats of special sealants designed to seal in chemical components, or special builder's foil and foil tape, often with some of the soft innards ripped out, perhaps replaced by steel box springs and organic blankets.

Many MCS patients are not lucky enough to afford adequate housing or medical care and live like refugees, driven out of their homes by building toxins and forced out of society by the toxins in daily products. They live in their cars, in wire cages, in tents, or in renovated trailers (homeless shelters are not fragrance and chemical free and thus inaccessible to people with MCS). The Environmental Health Coalition of Western Massachusetts did a survey and found that 57 percent of people with MCS had been homeless at some point since becoming sick. I don't know that there is any other population in America that rivals this level of homelessness, but the problem is not being addressed. A friend of mine, who finally found refuge in one of the few places with MCS acceptance, left me a tearful message the other day in which she said, "I am not living like a refugee – for the first time in my adult life." This friend was homeless for years due to MCS.

A few lucky patients have eventually found the means (typically after many years of struggle and loss) to either renovate homes to MCS-safe standards (as I have done) or build nontoxic residences. However, people with MCS are still almost universally ostracized in their communities, and life with MCS is undeniably lonely. My PCA who has MCS mentioned to me yesterday that most of us with MCS have all been "labeled" in our small towns in Massachusetts. Hearing this made me so self-conscious. I'm not sure what kind of freak label I'm wearing where I live, because I'm so exiled from my community, but my interactions with the "outside" frequently remind me that my illness is barely being tolerated.

I still feel fortunate that I have no neighbors within eyesight of my front door, as my last dwelling was a small city apartment and I got very ill from the wood smoke and laundry vent fumes from my neighbors. Some of my friends with MCS have lived with hostile neighbors who knowingly sprayed pesticides or other chemicals in their direction, sometimes with expressed intent to drive them out of their neighborhoods. These were, of course, violent acts of assault but law enforcement wouldn't do anything about it. Those of us with MCS have come to expect neighborhood hostility. We often try and create a land buffer from neighbors so they can't harm us, live close to other people with MCS, or to try and educate our neighbors so they won't turn against us. We have the rare disability designation of knowing our neighbors could possibly murder or recklessly endanger us and get away with it. Someone in the MCS network is always under fire. I serve on the advisory board of an MCS organization that frequently receives letters from people with MCS who are being driven out of their homes and neighborhoods and don't know what to do. The stories are heartbreaking, because nobody is offering enough funding to create real solutions (Brad Pitt – are you listening?).

It is fair to say that Feudale-Bowes' neighbors are oozing with hostility in this article, although they keep reverting to the permitting argument. "Some neighbors question whether her ailment is genuine," reports the article. "But they and others say the main issue is the couple's disregard of the zoning rules." I hate to have to explain the ableist subtext here, but it's something like, "We don't believe that crazy lady is actually sick, so let's toss her out of her bubble and see if she vaporizes." Does this remind anyone of the Medieval ordeal known as "trial by drowning," in which women accused of witchcraft were thrown into a body of water to see if they would float – since witches were said to float -- and they would either sink to their deaths or be hanged or burned at the stake?



Feudale-Bowes does seem to have fairly severe MCS. She has to stay in her bubble 10 hours a day, even though she and her husband also own a Lustron house – a very sought after item in the MCS community. Lustron houses were built as wartime structures in the 1940s. They are made of prefabricated porcelain-enameled steel to go up quickly and last a long time, and steel and porcelain are often well tolerated by people with MCS. Most houses nowadays are built with wood (which, even in its pure forms, leeches terpines that MCS people often cannot tolerate), manufactured wood products (such as sheathing, which contains formaldehyde), tarred roofing, formaldehyde-laden cabinetry, toxic carpeting, vinyl-clad windows, and other products that outgas toxic chemicals into the living space, making them uninhabitable to people with MCS.

Even houses built without these products, or older homes that have already outgased, contain many hazards for people with MCS: pesticides, gas appliances, cleaning products, etc. The fact that Feudale-Bowes cannot even live in a Lustron house and had to attach and accessory dwelling probably means her MCS is severe. Chemicals are likely, as she claims in this article, life-threatening to her. At the very least they cause her excruciating pain and other symptoms such as "migraines, joint pain, bladder inflammation, seizures and temporary paralysis."

Dr. William Rea has written about MCS deaths caused by chemical exposures, typically involving organ failure. People with MCS know about and hear about such deaths, but the living typically keep a low profile: we don't want to be next. To say Feudale-Bowes is generally fearing for her life right now is, I'm sure, no understatement. Where else is she going to live? Winter is approaching, and it is not a good time to pitch a tent.

What exactly is infuriating these neighbors so much? According to the article:

Thomas Kelly, 53, who lives across the street, said that while he feels sorry for Feudale-Bowes, her husband "just did whatever he pleased."

"We don't live like that," he said. "We live in a society governed by laws."

But Feudale-Bowes said: "If I don't live like this, my pain level is so severe that I can't function, I can't live, I can't survive. It's excruciating."


It seems to be something about lack of conformity, about the individual's inability to adapt to "a society governed by laws" that often requires sellers to spray pesticides around the perimeter of a structure to pass a housing inspection, or requires green builders to jump through hoops to build a straw bale house. There is another term for a lack of biological conformity: disability. And disability is what seems to be irking this guy. Feudale-Bowes' husband, Craig Bowes, said plainly, "My wife's not a lawn mower, and I didn't put up an illegal shed just to mess with the township." His statement says it all: if his wife was a lawn mower, the public outrage might make sense, but she is not a lawn mower: she is a human being with a life-threatening condition and nobody is providing a viable housing alternative.

Moreover, and sadly, her neighbors know that she actually is, socially, a lawn mower: they can push her around with no recourse. Her threats to pursue this issue under the Americans With Disabilities Act will probably go nowhere, if prior MCS cases are any precedent. Until society decides that people with MCS are not lawn mowers, people with MCS will be treated like lawn mowers. Societies governed by laws are great unless those laws are, say, Jim Crow. Or Apartheid. Or other laws that categorically exclude some members of society.

Has anyone asked Feudale-Bowes or her husband why they didn't obtain the necessary permits to put electricity and plumbing into her structure? I can wage a theory. In my personal experience, finding a contractor who won't infuse the walls of my house with fabric softener stench for days or weeks on end is extraordinarily difficult. Fabric softener alone, to a person with MCS, is like a nerve gas bomb set off in the house. The odor sticks to the walls and it takes a long time to air out the structure afterward to make it safe. Fragrance molecules are designed to be "sticky" and leave a residue. Anyone who has ever bought a used car with fourteen cardboard air freshener trees hanging from the rear view mirror knows what I am talking about. Or perhaps an easier analogy for most people is cigarette smoke: it does not dissipate when the smoker leaves the building. A smoker's house will always smell like smoke.

Beyond the licensed contractor issue, there is the issue of finding people who understand the principles of MCS-safe renovation. There are only a handful of known experts in MCS-safe building around the country. Green builders are often open to hearing about MCS-safe renovation, but their priorities are slightly different from those of MCS-safe builders. For example, basic wiring can be a problem for people with MCS, who often suffer from electromagnetic sensitivities and need specialized wiring in their homes. Plumbers typically use toxic glues to seal their pipes that reeks for weeks or months on end, and aren't very willing to use alternative products. If a plumber simply does what he has been trained to do, or an electrician ignores specialized instructions, Feudale-Bowes could lose her safe structure, and the toxic damage might be impossible to remediate (plus, obviously, she can't stay in a hotel while some stinky contractor is stinking up her safe space). This is the basic reason why she probably had her husband install the pipes, or did it herself. She didn't want to get sicker or die.

Housing accommodations are made all of the time for people with other disabilities. There is absolutely no reason why a judge cannot see this for the exceptional case of housing discrimination that it is. "For the wife's medical problems, there is sympathy," states Judge Carol McGinley. "For the owner's defiance of the township's lawful directives, there is no excuse." The judge is adopting quite a tone of condemnation against Craig Bowes: surely this guy should be run out on a rail for putting up a metal shed. I'm sure no dude in Pennsylvania has ever erected a shed without a permit!

Meanwhile, I wonder what is happened to the local batterers in South Whitehall who are beating their disabled wives instead of helping them? Disabled women are at least twice as likely to be abused as non-disabled women, and their intimate relationships are often riddled with violence. Given that reality, and the social climate that cushions such violence against people with disabilities, perhaps Judge Carol could act neighborly and use her energy for a real cause, and crack down on the men in her community who use their hands for violence instead of salvation. Meanwhile, I hope the rest of us can do something to prevent this horror before another witch (i.e. extraordinary woman) drowns in a sea of social ignorance.

Sunday, August 31, 2008




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.

Thursday, April 17, 2008



This image symbolizes me moving my blog from MySpace, which I just did (mostly)! My life also feels like this picture most of the time. Not because I'm able-bodied enough to hitch up an oxbow (or, in this case, yoga strap) and pull several tons of steel, and not because I'm actually doing the preposterous maneuvers in this picture, but because of ME/CFIDS and the fact that most of the time I feel like I'm lying beneath the steel.

Thursday, April 10, 2008

Largehearted Boy!




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!

Thursday, January 31, 2008

Corkscrewed! Me and My Lyme!



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.

Please do not reprint or reproduce any of this without permission.