Friday, June 10, 2011

Chicken Little and the Vaccine Sky Or Puberty Backwards

With the recent news that the autism community may have a whistle blower in Dr. William Thompson, I am again bringing this article to the fore, thinking people might want some history concerning the Vaccine Court and this whole unnecessary mess in general:

       In May 11 of 2011, in support of a press conference held by group of parents associated with The Elizabeth Birt Center for Autism Legal Advocacy (BCALA), and on behalf of all parents and children whose lives have been affected by autism, including my own family’s, I traveled  from Marietta, Ohio, to the sidewalk in front of the US Federal Court Building at 717 Madison Place NW, District of Columbia, on the edge of Lafayette Park. There, the steps up to the front entrance and the fountain splashing behind it were guarded by men wearing dark suits and sun glasses and who, while they never smiled, did not seem particularly threatened by the small gathering of mostly well-dressed people clustering together on the sidewalk.
Some of  the participants were representatives of cable news media.  Half a dozen, like me, were from scattered afar. A few were reporters from print media. Most of the participants, however, related somehow to EBCALA, either as parents who were interviewed during the study’s data collection process or as writers of the study’s Report which formally announced the group’s recent findings— appearing in The Pace Environmental Law Review.  [to see the entire press conference, visit here:  http://www.youtube.com/watch?v=zo3fONPmD08 ]
The study’s conclusion is the product of over two years of combing through Vaccine Court records and talking with the families of children who, starting in the mid 80’s, have received compensation for the damages experienced as the result to a life-threatening and forever-altering physical response to a childhood vaccine. 
Besides using actual ‘diagnoses’ as presented to the Vaccine Court, the researchers also used a universally recognized test in order to determine whether a diagnosis of autism was present along with another disability judged by the court as meriting compensation. Most of the parents interviewed during the course of this study are afraid to speak in public, having been warned that their child’s annuity could be jeopardized as a result.  However, some are ready and eager to tell their stories because they believe the obvious: that keeping secrets represses the truth.  For them, to have received money for their child’s autism, when so many other children with the same symptoms have tried to petition the court and failed, is unconscionable.
  These parents are unable to keep silent any longer about their child’s having received compensation from the court because they believe they thereby become complicit in the IOM and CDC’s ongoing claims that no connection exists between autism and vaccines.  Like the researchers from EBCALA, these parents want the world to know that the US Vaccine Court has indeed been regularly awarding compensation for children with vaccine-related autism—to over eighty families in fact. 
So, EBCALA argues, vaccines and autism are related. If autism is not related to vaccines, why reward compensation at all?  Just fess up and get it over with.   
Families are dying out here.
Why ‘the disconnect’ between bureaucratic claims and actual practice?
For those of you who do not know the legal process by which a person with a proven vaccine-related injury is awarded restitution, allow me to walk you through a quick scenario.
            Let’s say that you are one of those people who follow the exhortations of your federal, state, local, and county officials and get a flu shot.  Perhaps you are merely going to travel overseas and need required immunizations.  Next, imagine that within a few months, your curly locks begin to fall out in clumps, you lose your eye brows, your pubic hair also comes off in patches, and your skin is suddenly sleek and smooth, bald as a new-born mouse, as if you’ve just put yourself through a complete body wax. 
One look at the hair left on your pillow and at your exposed scalp in the mirror terrifies you.  When you rush to the doctor, he diagnoses you as having alopecia, an autoimmune disorder.   If you or your doctor is paying attention, you might then consider that your alopecia and your vaccine could possibly have a cause and effect relationship, especially once you get on the Internet and read the dozens of studies connecting the two, available from multiple, reputable sites.
Consider just one example of many of the cases that you will find which discuss the connection between alopecia and vaccines, this one from the Infectious Disease News:
In October 1997 during a review of the Vaccine Adverse Events Reporting System (VAERS), reports of hair loss after immunizations indicated that, of the 60 patients with reported alopecia , 46 had received hepatitis B vaccines. The cases ranged in age from 17 days to 56 years; 70% were adults and 83% were female. 

            With a sinking feeling, you will realize you’re one of the nearly 12,000 Americans a year who experiences an “adverse reaction” to a vaccine.  In fact, averaging the overall amount by state, we can calculate that 240 people a year per state experience an ‘adverse effect’ to a vaccine, which, in a state like Ohio with 80 counties, means 3 people per county per year suffer an ‘adverse effect’ to a vaccine.  Other reactions include seizures, deafness, low platelet count, narcolepsy, vomiting, MS-like symptoms, coma, and permanent brain damage.






Actually, according to Kessley in the June 2, 1993, JAMA, that number represents only 1% of the actual people who experience an adverse effect since most people do not report. 
How are they feeling today?
Vaccines are usually considered to do the most good while harming only the few, who must be sacrificed so that the rest can acquire ‘herd immunity.’  Your vaccination attempt was meant to make you a protected and protecting member of the vaccinated clan.  Unfortunately for you, instead of strengthening your immune system, the flu shot has compromised it.  In your case, you have alopecia, but you just well as might have experienced one of the disasters listed above: spin the wheel.
Most important, you have become a member in a club with a wide association—a club which none of the members elected to join and which has no centralized membership registry.  Although you may never meet, in your county every year there will be another three people who have experienced some kind of vaccine reaction.
Perhaps at this point in your research, either you or your doctor might choose to make an ‘Adverse Effect Report’ in order to protect other people and prevent them from experiencing the same.  Whether or not to make the report is optional, hence Kessley’s numbers.
 Where would that report about your vaccine reaction go?  To the Center for Disease Control, into a data base where each manufacturer is labeled as Company A, Company B, Company C…ad infinitum.  The actual name of the maker of the lot that affected you will never be revealed to the public in the reporting process. 
Unlike when Americans go to buy a car and check in with Consumer Report in order to prevent against buying a ‘lemon,’ families cannot make an informed decision about which vaccine manufacturer to choose and thus play a game of Russian roulette—except with two bullets instead of one: the first is whether or not they’ll have whatever DNA will make them vulnerable to a vaccine in general, and the second bullet is whether or not their vaccine maker will be one of the really ‘dirty’ ones.  
So much for a market-based economy, where citizens can make informed choices about life, death, and alopecia. 
Surely, someone must be keeping track, you think, rubbing your bald head in wonder.  Surely some secretary at the very least has opened that file at least once, looked at the contents, and gasped, “Golly! [company name here] vaccines really appear to have given a lot of people alopecia this year.  Maybe we should tell people about it.” 
But no metaphorical Daniel Ellsburg comes forth with the goods, so the wheels keep turning. 
But back to your alopecia: let’s say you wish to be compensated both for a ruined immune system and a life allergic to your hair (with no eyebrows, even).  B 12 shots are expensive; furthermore, you’re less able to work.  Do you call on Merck, SmithKline Beecham, Wyeth-Ayest, Medeva, Connaught, or Lederle to help you out?
            No.  You sue the Federal Government. 
Why?  Because the Federal Government is what’s behind the vaccine schedule, not the pharmaceutical companies. 
Never mind that, when we take a close look at the people who sit alternately on Pharmaceutical Boards and Regulatory Boards, they are the same individuals and so shouldn’t both be receiving a salary one year and overseeing the next!  These merry-go-round professionals are in charge of the policies that may determine the quality of your health, which means the quality of your and your family’s life, and the equation they use on their balance sheet is a very simple one: it has written you off.
The Federal Government picks up the tab for a vaccine-related injury, ostensibly, because the vaccine schedule is federal policy.  Ergo, if anything goes wrong, companies should not be punished for meeting the needs of ‘public health.’  As a result, the government compensates affected people whose cases meet the ‘standards’ of the Court and therefore are deserving of compensation.
Thus from the loins of (1) mandatory policy based in the notion of the public good and of (2) vaccine maker’s  self protective interest, the Vaccine Court was born.
“Vaccine court” is the popular term which refers to the Office of Special Masters of the US Court of Federal Claims, which administers a no-fault system for litigating vaccine injury claims. These claims against vaccine manufacturers cannot normally be filed in state or federal civil courts, but instead must be heard in the Court of Claims, sitting without a jury. The program was established by the 1986 National Childhood Vaccine Injury Act (NCVIA), passed by the United States Congress in response to a threat to the vaccine supply due to a 1980s scare over the DPT vaccine. Despite the claims of most public health officials that reports of side effects were unfounded, large jury awards had been given to some plaintiffs.  As a result, most DPT vaccine makers had ceased production. Officials feared the loss of ‘herd immunity.’
            In other words, in order to ensure the vaccine supply, the U.S. Department of Health and Human Services created the National Vaccine Injury Compensation Program (NVICP) in 1988 to compensate individuals and families of individuals injured by required childhood vaccines and to ensure that vaccine makers would never be sued out of business or stop making vaccines because of a fear being sued. 
Since then, the program has been funded by an excise tax of 75 cents on every purchased dose of covered vaccine.   You got taxed to acquire alopecia.
 To state it a different way, the tax on the ‘purchased dose of covered vaccine” was created in account of, and in order to pay for, the statistical probably that someone, you in the case of your alopecia, my child in the case of autism, could be injured by receiving a vaccine.
            As I made my way over the Appalachian foothills towards DC, I knew critical information has always been withheld about whether or not to vaccinate and also about which companies have vaccines that cause more reactions than others.  As a result, parents never receive key information that might let them protect their children.  
I knew also that the regulatory bodies had crunched numbers every which way but correctly in order to disconnect vaccines with autism.  Dr. Thomas Verstraeten’ original CDC data connecting vaccines and autism was re-crunched, changing key populations, in order to produce the results of the report he later wrote for the CDC.  The original was never made public for the world’s experts to examine and study on their own and is still unavailable.  Rumors say it is now in ‘private’ hands so not subject to the Freedom of Information Act.  Others say that the data was destroyed. 
The fact is that measles have been found living in the intestines of kids with autism, no matter how many times the government ‘witnesses’ say they have not.  Mercury pours out of children whose parents opt for chelation, my son included. Upon retiring, the former Head of the Institute of Medicine, Dr. Bernadine Healy, stated that the vaccine-autism issue needed to be further investigated, but she was ignored.   More recently, the infamous "Danish Study," which "proved" that Thimerosal and autism are not related, has been called into question because its numbers were purposely fraudulent--as revealed by CoMed after successfully involking the Freedom of Information Act.  Never mind that Dr. Paul Thorsen, the principal investigator for the "Danish Study," is now on the lam....indicted...and missing with two million dollars!
Unfortunately, in our infantile post-911 sleeping position, during which frightened Americans have turned to Daddy and Mommy in the form of the Federal Government to cradle, sooth us, and make us feel safe, America has reflexively relied on authority to help assuage its existential fear.  The Emperor with No Clothes is King, and I, pointing my Subaru toward Washington, am Chicken Little.


Therefore, I had little hope that the press conference I was going to see would make any difference other than help me think that I belonged to some sort of community outside of the rural Appalachian town where I live, especially among the local intellectuals associated with the small liberal arts college where I had been an Associate Professor and Director of Experiential Education before I resigned to take on my son’s autism. 

For my colleagues, especially in the lab and social sciences, pointing out the inconsistencies of the Vaccine Authority was sacrilege.  They seemed to see themselves and their careers glowingly reinforced by the many abject studies they produce which, while  providing them with opportunities to present at professional conferences and publish in professional journals, are ultimately meaningless because of the superficiality of what they measure when compared to the gravity of their subjects.

            Instead, I was On the Road to Washington. In spite of the fact that family money was low, gas over four dollars a gallon, my husband and I agreed that I should show up at the Courthouse—if only to see what happened.  Wakefield had been taken down.  Geier is embattled.  Maybe some good news for a change?

Every twenty minutes on the car radio, I heard the news cycle:  our two wars, Libya and Syria escalating, Bin Laden’s death prompting us to argue with each other.

 Americans are burned out, I thought to myself.  We’re exhausted and afraid and turning on each other as budgets are slashed.

Listening to the stories, I reflected on how, back in Marietta, as the new governor clashed with the state teachers’ union, we’d been watching neighbors argue over collective bargaining rights. They debated over fences about which political party was to blame for just about everything, accidentally insulting in the grocery store acquaintances they had assumed agreed with their position.

The subject of autism had taken a turn for the worse back in Marietta, too.  For its yearly Science Speakers Series, the local college had brought in a fancy-pants expert, Max Witznitzer, to disavow the relationship between vaccines and autism on what had become, for him, a rubber chicken circuit as he went on to his next destination: Aloha, Hawaii!

 His assured a packed audience that vaccines do not contain human DNA (many of them do).  He denied any connection between vaccines and intestinal health issues (“leaky gut syndrome is a myth”), and his claimed that there really was no increased in autism and that the reason that so many people were attending the event that night was because ‘Autism is sexy.”  In spite of how patronizing he was—and uninformed, local doctors felt further encouraged to go forth and vaccinate, and parents were further soothed enough to hand over their children to public policy: thirty five pathogens before age two, plus the adjuvants (aluminum, nickel) that make the mix into a magic elixir. 

The end result would be that if one of the vaccines proved to be inappropriate for the recipient, or otherwise ‘dirty,’ it would end up labeled as only A, B, C, or D ad infinitum in the Adverse Vaccine Paperwork that is never made pubic, never makes it to Consumer Report. 

But no one knew that back in Marietta.  Perhaps not even Dr. Fancy Pants, who hadn’t cited anything but government studies.

There he was: Dr. Fancy Pants: continuing the cycle.  Everywhere it repeats itself, replicating like a foreign DNA that perpetually recombines itself with medicine’s physical and spiritual healing purposes in order to produce something unrecognizable: toxic and driven by money.

Perhaps ‘escape’ would be a better word to use than ‘drive’ of the time I spent in the car getting to the steps of the US Federal Court House.  Tired of feeling like the only one in Ohio with an I Support Dr. Wakefield bumper sticker, I was going to where the fight was: to the very place that had awarded vaccine-related cases of autism at the same time it denied them. 

Furthermore, I thought I’d swing by Baltimore, spend the night at my friend  Kurt’s house (through whom I met my husband), and also pick up our old friend Doug, who was always good for astute observation and was at times given to make noble, but useless, symbolic acts, such as the one I was planning on committing: driving over the mountains to attend a press conference that no one would even watch or care about except those like me, still clinging to the belief that her child’s precarious state is a direct result of being damaged by a vaccine.  Furthermore, Doug understood grief.  Not only had he just lost his wife, but forty years earlier, he lost his first son to SIDS, which began the unraveling of his first marriage and his life as he knew it.

In preparation for making what would be the 11 by 17 sign I would carry for the event, I enlarged a copy of my son’s Fecal Metal Test, performed when he had been undergoing chelation therapy for seven months with transdermal DMPS: he literally ‘dumped’ 843% more mercury (neurotoxin) than what is considered ‘normal” for a boy his age with no amalgam fillings, a quite impressive excretion by anyone’s standards.  The amount of nickel that he released was also noteworthy (interferes with the transport of zinc), as was the antimony (anti inflammable agent in infant and children’s sleep wear—effect on the body unknown.)

“If a person asks me what the sign is for,” I said to my husband that morning, brandishing it like a shield, “I’ll them I want the Vaccine Court judges to explain to me why my son was so full of mercury and nickel.”   The question seems reasonable enough.

As a child, I was the adventurous sort.  I grew up with a widowed mother in a rural Boston bedroom community, and there were plenty of old rail road beds to take us where we wanted to go and no father to tell me I could not go.  We hiked and skinny dipped, rode our bikes and our horses to lakes and ponds that our parents never saw.  Then I traveled throughout college and during graduate school.  By the time I got my PhD, I was based in Mexico but commuted to Japan to work. 

Once I had children, I grew some moss, especially once autism arrived.  I had always imagined that I would study on some Fulbright or on an exchange with a college of university and bring my family along.  Soon after autism moved in--once I realized what it meant that my lively son who had walked, talked, and recognized letters early was trapped inside his ill body--even making it to the grocery store would become impossible.  No walking down the sidewalk for us.

Thus, going to DC to the steps of the US Court served another purpose: to awake in me the same feeling of freedom, self possession, and place in the world that travel had always given me.  I was getting out of the house!  In fact, the last time I had visited DC was the Gay Rights March in the early 90’s.  Along with hundreds of thousands of people, I’d been given a pink sticker that said, “I was Counted.”

At the steps at 717 Madison Place NW, we would be counted as well: all fifteen of us.



Midway between DC and Marietta, Ohio, there’s a lot of religion on the FM and very little public radio.  Some times the sermons are uplifting, such as when I am learning about the nature of forgiveness.  I surely need to be forgiven.  At times such as my drive to 717 Madison Place NW in the car, or when I can’t get back to sleep, I have plenty of hours to think about all the things I have done wrong.  In fact, I often find that, when I am alone for any period of time, what I have blundered is the subject I think about most.

 The number of people that I could apologize to is limitless!  I could spend a life time saying I’m sorry.

Near the Eastern Continental Divide, a voice coming from the speakers reminded that if I don’t forgive others, I will never be forgiven.  Driving at 70 miles an hour, I thought about all the people I am angry with.  I tried to clear my heart and focus on the road at the same time as I attempted to let go of what’s keeping me from reconciliation. 

Soon, I found myself snagging.  It didn’t take long before I thought of someone I’ll never forgive; then that person became another, then still another, all of them somehow related to autism.  They have failed systemically, institutionally, corporately, academically, bureaucratically, divisionally, communally, interpersonally, and personally.

No remediation exists for them, not even awards from the Vaccine Court.  What we want is not money; we want our Dannys and Susans back.

How do we expect to be forgiven if we are not willing to forgive?

Without really wanting to be, because it somehow feels worse even than being an autistic boy’s mother who is on her way to wave a sign at the US Federal Court building, I got that feeling which is as familiar to me as the dread from a recurrent dream I had during puberty: I was behind the wheel of a car, and I don’t know how to drive.

 I glanced at my hands on the wheel, saw the age spots on the gripping knuckles, twelve again in a fifty three year old woman’s body.

Oh, great!  I said out loud, trying to ground myself: Just what I want: to  feel twelve again, driving at 70 miles an hour down hill on I68 just west of Cumberland, the rubber from the breaks of the trucks on either side of me burning in my nostrils like the smoke from the flames a pair of chariots going to hell.

I kept driving, hands on the wheel.

The first part of me to change when I entered puberty was my skin.  Switching from an androgynous child to a woman gave me pimples and a new layer of fat.  I was obsessed with self care and constantly showered, prey to advertisements for makeup, hair styling, nail care as I tried to figure out a ‘style.’  My hair was thick and alive—everywhere!  I shaved constantly.

The first sign of menopause was also the pimples, the fat still there but shifted to different places, off to the side like the curled yellow at the edges of quartered chicken parts.  My hair has thinned everywhere except the mustachio and the chin, which have begun to sprout with symmetrically-placed stiff white hairs that, if I’m not careful, I find myself absent mindedly pulling on when I ponder.

During puberty, I slept like the Log of Old, for hours dead to the world while my body was growing.  Now I share a bed with the Log of Memory, making a place for it with my husband and me when we lie down.  There, as soon as I awake in the night, I think of something I would prefer not to remember.

From whatever position I am in when I open my eyes, I can stare at the numbers of the time projected from the clock up onto the ceiling, and thus when I wake during the wee hours, I never even have to roll over in order to affirm that I will never fall asleep again. For me, night is over.

My first clue that I would have a period was when my mother explained my reddened underpants with the words, “Now this will happen once a month for the rest of your life.”  She might has well have said, “Forever” because that’s what forty years sounded like: Freedom would be just the name of a menstrual pad.  Forever Spring.

And here was Spring four decades later—out the window on this down slope in the lower elevations I was cruising through, leaves unfurling and opening on the other side of the glass, the trees scattered across a shallow valley. 

No gentle spring breezes for me: instead, thanks to the process of becoming a Crone, heat builds within me like a seething volcano about to blow on some tropical island.  I ride the waves of its constant broil.  I bake in my Endless Summer.

The gospel music on the radio ended, and a voice said, “The nature of humanity is to sin what Christ is to forgiveness” as, with station crackling, I headed back up another mountain, higher than the last, where there were still no leaves on the trees.  Then, the radio signal was gone, my foot on the gas, hands on the wheel, a cramp in my middle aged back until I remembered as the trees flew by: I’ve got cruise control.

My hand on the wheel: the ring-finger still a size 4 but on what are now haggard hands, the forearms sagging.  I was relieved to be driving and unable to see my triceps safely, my once estrogen-fueled muscles like soft pillows now that need to be replaced with a higher weighted loft. 

Instead of coming out like a flower that will be fertilized and bear, I hang on like a husk that has released its seed but is not yet ready to plunk down to earth and be buried or to be carried away by the wind, a desiccated fruit with still a bit of sweetness. 

I see the future: the saggy bags that are my breasts, the low slung testicles of age in my husband’s stride.  Our widening bellies and ribcages bookend the narrowing of my daughter’s waist and general effulgence.  My son, eleven, autistic, and coming to puberty himself, announces in public with no self awareness, “Mom, my penis is growing!”

By the top of the mountain, I could find an “Oldies” station out of Washington.  When “Groovin’” came on, I thought of being prepubescent with nothing to do and hanging out at Jack’s Store, which was across from the library, up the street from the grange and the Congregational Church in the little down town where I grew up.   

I remembered putting on my favorite pair of bell-bottomed jeans, a red sweater, and a scarf that matched, an outfit which I wore constantly because suddenly none of my wardrobe fit me, and I was both afraid of, and resented, my new curves.  Because my father was dead and we lived on Social Security, I was afraid we didn’t have enough money for new clothes, so I pretended to want to wear only the few that I had. 

Worse, I could no longer take off my shirt because my bee-sting breasts were emerging. 

Lowest of all: I worried whether or not I would be beautiful, something I had never bothered to consider.

“Groovin’” became “Love Her Madly,” and I thought of how similar my current sense of physical change is to the gap between childhood and adolescence.  Here I was, having spent the previous nine years enmeshed in the overwhelming necessities imposed by autism. I had utterly missed my 40’s—nearly a decade spent trying to save my son’s health, preventing his little body from creating the pentosodines of permanently inappropriate biological pathways.  Then, I woke up one day, and he was eleven. 

Also, none of my clothes fit though I weigh the same as I did thirty years ago.

If you know anything about families with autism, you realize that they are always broke.   My daughter anguished that someone would see us when we went into the Goodwill to buy her school uniform pants and shirts.  As I neared  I 70, I realized that I was wearing a pair of pants I had bought when Trevor was a year old, when I hadn’t yet shed my baby-making fat, purchased right before we  lost him to his 12 month vaccines.  All the clothes I own are now ten years old, two sizes too big, and bag around me like they are someone else’s.

I mused, dialing the radio again, searching for a new station amidst static, the branches of the trees up at this elevation still barren, spring later in coming. 

My daughter has recently described me as ‘frumpy.’  As I go through what feels like puberty backwards, I am again in a body I didn’t recognize, with a future uncertain, worried about finances, with a sense of self shifting as fast as the scenery outside my car window.  I wondered if I would ever know who I was, would ever look in the mirror and recognize myself, would create a new definition to replace the version of the self I lost.  Or never possessed.

Through the pass, at the Vietnam Veteran’s Memorial, the valley that leads to Frederickstown opens wide, and I could see that in spite of the barrenness of the trees that surrounded me, where I was headed was engulfed in spring as far as I could see, all the way to the horizon.



Going to stand on the US Federal Courthouse Steps in DC meant swinging by Baltimore first to collect Dooglie Wooglie Bo-Booglie.  Luckily for me, Doug and Kurt ‘knew me when,’ meaning ‘before autism.’  If they had never talked to me before, they might think I have always been an embittered shadow of my former self.  Doug recently buried his wife after her ten year stint with cancer, and he knows what it’s like to swing widely between hope and despair.  Kurt broke his neck when he was twenty-eight and has lived independently in his wheel chair ever since.

That night, while Kurt, Doug, and I were sitting around talking, Doug’s new girl friend, Mary, said she wanted to come along with us to DC.  Was that ok with me?  She had gone to DC for something political only once before, when she was in college forty years before: a march against the Vietnam War.

“When I got there,” she said, “I realized that I was surrounded by a whole lot of people who took their opposition to the War way more seriously than I did.  I mean, waaaay seriously.  They couldn’t talk about anything else—they were so invested.  Of course, some of them had lost children, friends, husbands.”  She shook her head sadly, remembering.  “What did I know?  I was just a kid who thought it would be cool to go.  I had no idea.”

I told her this wasn’t a march on Washington; the event was a press conference, and most likely we would be the only ones present.  Secretly, however, I hoped there would be such a crowd that, unless we got arrived early, we’d never make it up to the steps.

“But at least we’ll post,” I said, already knowing that Mary had found herself again going to Washington with someone else whose identity was completely tied up in ending something: this time the lie about autism and vaccines. 

I also am ‘waaaay too into’ the vaccine story and its outcome.  Whatever you do, don’t invite me to a party and give me a class of wine: I won’t shut up.

As I drove along the Baltimore-Washington Expressway the next day, Mary beside me and Dooglie-Wooglie in the back, I thought about the ways I had changed since autism came into my life and how they parallel those same pesky feelings I’d felt when considering the threshold of adulthood from the perspective of puberty.

When I was twelve, I was insecure, irritable, behaved inappropriately because I was socially awkward.  Like a weathervane with a storm coming on, I spun between the cardinal points of my inescapable environments of school, church, family, and friends.

              In 1967, when I was just beginning puberty, my father had died in a fire, saving my family’s lives.  House gone, clothes gone, father gone, mother unavailable.  The world as I knew it had changed.  Although I had a sister, we turned from each other, each dealing in her separate ways. 

Eventually, according to our own means of coping, we each became dissociative about the experience, as if it hadn’t happened to us—mostly because, within a few months of the fire, other people became uncomfortable if one of us brought the tragedy up.  As a result, we learned not to discuss our unpleasantness.

While I always had withdrawn when I was sad or anxious, my response intensified after my father died and my body began changing.  While, I realize now we all had post-traumatic stress syndrome, few knew what the term meant during that era.

On beautiful Saturdays, I watched reruns alone inside for hours at a stretch.

Here I am again, I realized, as if going through puberty again but this time I’m backwards, as I shifted gears, listening to Doug’s quick directions and overwhelmed by the traffic that we do not have in our small, Ohio town of 15,000 residents. 

I am in the same dilemma as after my father died.  Not only is my body changing now that it’s running purely on my adrenals (they take over for the gonads after menopause), but my social life is altered; I can’t let the general toxicity of our environment go, and I upset people by my vocal anti vaccine stance, my inability to stop harping on the poor quality of our food, my observance that an entire generation of our children cannot pay attention or learn.  I no longer know what else to talk about; frankly, the rest bores me.

While my husband and I attempt to coordinate our response our family’s struggle with autism, like my sister and I each coped with what we called The Fire and its aftermath in different ways, we also have our own ways of coping.  He is embedded in the mainstream of the community and does not ruffle feathers; I am the one who waded into autism full time, which led me directly into the Autism Funhouse with its many mirrors. 

Furthermore, I am tired of not belonging to anything but what is called a ‘fringe’ community.’  I forget to tell women their outfits look cute and that I like their new hair cut.  Instead, I grip them by the wrist and warn them that, just in our small Ohio county, in twenty years autism cost will million dollars when the entire Developmental Disability budget for the county is just 3 million. 

When someone says, “I thought that this hoopla all died when Wakefield was exposed,” I cringe because there is so much to say in response that no one wants to hear and that I would like to forget, especially how I feel about authority.

As you can imagine, I don’t go a lot of places, especially with a kid who, on a bad day, might be flapping his fingers around in front of his eyes and reciting lines backwards from Ice Age.

The night before the press conference, around dinner at Kurt’s house, listening to Kurt, Doug, and Mary banter about whether or not Donald Trump would run for president, I had mused that my plan for the next day would to stand mutely on steps of the US Federal Court of Appeals, with my 11 x 17 copy of my son’s Fecal Metals test.

Glancing in the rear view mirror at Doug in the back seat, with his white beard and his sailor’s cap, singing a dirty sailor’s ditty while he looked out the window, I marveled that I could no longer get back to the world of which I had been a part, where happiness was possible.  When Doug lost his son and the rest of his life fell apart, how did he get over it? 

“New York Avenue is up here,” he said, interrupting his limerick.  “Take a left.”

Meanwhile, Mary sat in the front seat beside me, tracking our progress with her IPhone. 
            “I don’t know what I did before without this,” she said.  “I must have been always lost.”

As if to cheer myself on, I repeated out loud the title of a MADD pamphlet I had seen which explained to me about the nature of grief and secondary victimization.  I said, Your Grief: You’re Not Going Crazy.

 Neither Mary nor Doug responded, as if they were considering for a moment whether what I had just commented was somehow connected to the thoughts each had been thinking.

Silently, I kept repeating the title of my MADD pamphlet to myself, the way I sometimes do, the little booklet that had brought me comfort after my son’s diagnosis of autism.  It’s your grief: you’re not going crazy. It’s your grief: you’re not going crazy. 

Even though I had not lost my son to a drunk driver, in many ways the experiences of MADD mothers and the activist mothers of children affected by vaccines are the same.  Certainly the nature of the grief is similar, as is whether one’s unformed sense of self was the cause of feeling lost or whether feeling lost was the cause of an unformed sense of self.

It’s your grief: you’re not going crazy. It’s your grief: you’re not going crazy. 

My daughter was born when I was forty.  I thought I understood what love was until I had her.  Then twenty months later, on the first day of spring in the year 2000, when my son was born, I could not have felt more fortunate: he had an APGAR of ten and soon began meeting his milestones early. 

Although he experienced  a round of colic in there and what we interpreted as crankiness, during which he would do what we called ‘the shriek’ and be inconsolable, by the time that he was a year old, he spoke about twenty five words. 

We did not notice anything dramatic about his behavior immediately after any of his vaccine, so he continued to have them.  Then, we ‘lost’ him over a period of several weeks after his 12 month shots.  Little by little, he stopped talking, no longer looked up when we called his name, stopped sleeping. 

For awhile his head even grew out of proportion—which I later realized was due to swelling of the brain.   When we look back on it now, we see that the arching of his back violently when we held him was not a sign of his stubborn nature, and the choking more often on his food and drink, which we thought proved he was so eager to eat that he made himself unable to swallow, as if it somehow indicated something positive, like how big he would grow to be, were all signs that he had experienced brain inflammation and seizures.

After the diagnosis, I thought that if I just threw myself into autism for a year, he would pull out of it.  However, after my first year of autism and trying to work at the same time, I realized that I would have to resign from my job if he was ever going to have any kind of chance at all.

I had no idea that moving from a full time professional to a part time one would completely change my sense of who I was.  I lost everything that I had considered the world—except my family, which was in mortal danger.  Autism was the shark that circled my house.  Like many mothers, I became obsessed with exploring the biological basis for autism, especially when I began to see the biological interventions were having success.  

I grieved for my son, the past relationship I had with my daughter before autism arrived, the way I had thought our family would be, my professional life, my friendships, and once again my father—though it had been over forty years since his death. Although I tried to save my son, much like my father had saved me, I was unable, at the point in time of the press conference, to say my son had recovered completely.  I felt I had failed him.

What would happen to my son when I was gone?

In the meantime, the government kept insisting that not only were vaccines safe, but also people like me were becoming a danger to the communal good.   On television, interviewers shunned and mocked parents like me.

As with my father’s death and socially acceptable conversation, the deeper I went into it, the more I censored, just as I had about having been in the fire, flashback I was having, and missing my daddy.  Somehow, driving to this press conference was supposed to bring me peace, but I wasn’t sure how.

Once Doug, Mary, and I were in the vicinity of the US Federal Court of Claims, we at first couldn’t find any parking, then located a little garage that accepted only cash.  As I pulled my Fecal Metals sign out of the back of my Subaru, I was counting on Doug to help us find our way to the courthouse steps because the evening before, when we were trying to decide whether to drive or take the train, he had boisterously claimed to know the city like the back of his hand, ever since he went to Georgetown fifty years earlier.  In fact, he had boasted, he had even spent the night in jail close to where we were going.

Standing on the sidewalk and watching him scratch his head, I realized that he now had no idea where he was.  Unfortunately, I was even more lost than he was, in about every way possible.  It’s your grief: you’re not going crazy. It’s your grief: you’re not going crazy.  Mary, luckily, still had our location on her IPhone, and she enthusiastically pointed us in the right direction. 

I followed her like a gosling with my Fecal Metals 11-17 sign, in my baggy clothes, and my worn out Tevas.  Though it was the beginning of May, the day would be warm; I wore my old Bermuda shorts and a T shirt, my skin pale as a marshmallow who didn’t shave her legs and wore clothes that didn’t fit anymore. 

As we made our way along the streets, Mary held out her Iphone before her and guided us with it as if it were the Arc of the Covenant.  Car horns honked, and their doors slammed.  Breaks squeaked.  Following along, I kept my rhythm in my head: It’s my grief: I’m not going crazy. It’s my grief: I’m not going crazy

I realized how on edge I was when I burst into tears at the sight of the building at 717 Madison Place NW and the little cadre of mothers clustered at the bottom of it, the parents and attorneys who were about to make their speech.  The media hadn’t yet arrived.  A girl with piercings and tattoos sat in the shade on the curb, and a grandmother introduced us to her darling grandson who wanted to know if we came on the train and then wondered vociferously why we had not. 

As the press conference began, I counted forty people. 

I remembered being twelve on the Boston Commons when Credence played for thousands against the war.  That summer I turned thirteen.  My mother remarried, and we were moving to Ohio.  Someone gave me the 45 rpm record of Neil Young’s Four Dead in Ohio as a going-away present.  By then there was a major turning against the war.

 How long, I wondered, looking around an empty Lafayette Park, holding up my Fecal Metals sign, my smile a grimace, will it take for people to get angry enough to do something? 

Especially when they realize that their children are not only being killed in two wars, but they are also being stolen from them by our vaccine program and the food and chemical industry?

“What we need, “I said to Doug, though he couldn’t hear me, and Mary leaned instead toward me to make out what I said, “…..is a camp-out on the mall like the Vietnam Veterans did.  That might get some attention.” 

“Do you think so?” she hedged.  This was my issue, not hers.  Then, abruptly she confided that she secretly wondered whether her son’s seizures could be related to his vaccines since they have been labeled ‘non epileptic’ and he’s always had social problems.  Her son is now twenty-four.

Dooglie took a picture of me at that moment, standing next to her inside my baggy clothes with no one in them.  He caught me saying to her what I really think, which I rarely say to anyone any more.

Who is that woman? I would marvel later when I saw the photograph, speaking of myself, not Mary, horrified by what I saw.  She doesn’t even look like me.  We can’t even be related by marriage, for heaven’s sake.

After the fire, though I had lost what I thought was everything and even my body was changing, whatever I would become was before me, unwritten.  I would stare at the family photos that had survived the blaze and search the face of the baby that was me on my mother’s lap, trying to recognize something of myself. 

Now, going through puberty backwards, I can’t see what’s ahead, just the trail of things I thought were once mine or which somehow I believed represented me: my job and professional contacts, the friends, the childhoods I thought my children would have.  Now, some people duck into downtown stores or up different aisles to avoid talking to me.

 It’s my grief: I’m not going crazy.

There in DC, all I had left of my life was my baggy clothes and Fecal Metals sign, which I held at shoulder level like a mirror image of myself, as if I were a two headed mother, and whoever I once had been just disappeared.

You can watch the press conference at http://www.ustream.tv/channel/ebcala.  The lawyers who wrote the study spoke first.  Then, one by one, parents of children who had received compensation from the Vaccine Court told their stories.  Each had given birth to perfectly healthy babies who deteriorated before their eyes, just like my Trevie-Man had. 

Most common were the stories of the children’s inconsolable shrieks after vaccines--which some of the speakers (like my husband and I did) said they first attributed to colic.  Other parents had children who immediately began to have obvious seizures.  I learned that day that the arching of the back and the inconsolable cries we experienced with my son were probably the result of his having seizures.  We didn’t recognize what they were. 

One of the mothers spoke of her child’s beginning to laugh at things that weren’t there while at the same time he suddenly lost his ability to speak.  Her story, in particular, was my son’s case history, especially the way she would describe her boy’s stalking the perimeter of a room like a caged animal.  We used to call my son ‘the shark’ because he never rested.

I stood between the camera men but several feet behind them, holding up my Fecal Metals sign for the parents speaking at the podium to see as they told their stories, just in case any of them needed courage.   This was my community.



Afterwards, the media had questions.  Specifically, they wanted one of the parents to say that vaccines were bad, which none of the parents would do. 

However, the parents did make one demand: stop denying that vaccines are unrelated to autism.  They counseled parents to do their homework and choose wisely.

            The media packed up, and everyone milled around. 

Doug had been taking pictures with his dead wife’s camera.  That morning, in fact, he had decided he would learn how to use it because she had loved it so.  As he took pictures, I introduced myself to a number of women involved in the study, most of them from Minnesota.  Many of them wore suits, high heels, styled hair, and asset-defining make up, like you’re supposed to do if you are a professional. 

I had my picture taken with what a friend of their off to the side laughingly referred to as ‘The Power Women.’

That day on the steps at 717 Madison Place NW, the combination of dry and wrinkled middle aged skin and dark leg hairs that had not seen the light since October in my kayak was not an attractive sight standing on beaten up Tevas.   While conversing after the event was over, I caught a woman, one of the organizers, who was wearing a conservative suit, give me the up and down.

 In that instant, before I ever saw Doug’s pictures which would confirm my appearance, I experienced myself as she saw me: an aging hippy in her braids, baggy clothes, carrying a Fecal Metals protest sign, sporting hairy legs and armpits and a small back pack.

Like a pubescent girl who knows nothing about fashion but realizes that her boyish style is inappropriate, I realized I had out grown my wardrobe, had no idea how to dress except that I hated ruffles and preferred to look as if I were headed to the beach, which would not play if I wanted to be taken seriously.

In spite of the fact that some of these mothers had twenty year old autistic kids in diapers and a helmet, they looked put together.  In contrast, I appeared a wreck.

 Once again, I found myself at fifty three doing exactly what I had done at twelve, anguishing over how I looked and not knowing what to do about it: diminished beside someone who had maintained her poise wearing stiletto heels on the US Federal Court of Appeals steps. 

Then the woman gave me a hug.

“We ought to camp out on the Mall,” I said to her then, though she was probably younger and most likely didn’t remember the event.   “Set up tents.  You know, like the Vietnam Veterans Against the War did.  We’ll get hearings then, or they’ll have to arrest us.”

She considered for a moment, and I saw in her blue eyes that look, the look we all get we get when we realize again we’re cornered, that this really did happen, that we aren’t in someone else’s horrible dream. 

Before we know it, we’ll each have lost another decade. 

“That’s a good idea,” she affirmed. 

Then we parted. 

I didn’t know that we already had disgruntled people that would challenge our economic structure and would potentially be our allies.

What I should have asked was, “When?”

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