Saturday, August 20, 2016

If Anyone Recommends Reading Pema Chodron, I Will Cut A Bitch

When your feelings match up with your expectations of your feelings, or others expectations of your feelings, life is much easier.

The amount of stress I feel daily, moment to moment, is overwhelming, and I cannot seem to get it under control.

Ever is overwhelming. I love her beyond what I can express. She is interesting, hilarious, one of the smartest little people I've ever met, quirky, kind. She smells delicious. I cuddle her constantly. We laugh together every day. I tell her I love her over and over. I play games with her, take her to the park, draw with her, play out back. She is lovable and one of the cutest kids I've ever seen, and relentless. Of all our children, the most relentless.

The facts are that Ed is bipolar depressed right now and doing 100% everything, every single thing he can do to get better, and I have enormous respect and love and devotion to him for that. But he can't really help right now. And Lola, Lola is in freshman year. And my mom works sometimes six days a week and is tired. And that's it folks. That leaves me and one five year old that never, ever EVER STOPS TALKING AND NEEDING INTERACTION and a puppy that I didn't ask for that poops and begs and cries and a shitload of work I adore and want to do and a messy house and a messy kitchen and endless papers to sign and meetings for school to attend and older boys that I miss so very much and who always call during the three hours that I am working and of COURSE i take their call because DUH but yes, so many THINGS THAT MUST BE DONE.

Right now this is  my schedule

7am wake
7:45 walk Ever to school
8:20 arrive home, clean up stupid dog poop from puppy that I love but never meant to be responsible for-this was Dakota's dog. Begin working.
11:45 Leave to get Ever
12:30 After feeding Ever lunch and putting her in front of a movie, work.
2: Leave to get Lola, Ever in tow. Sit in a ridiculous, never-ending row of traffic that barely moves, in 100 degree heat, with a air conditioner that barely works, and a rowdy five year old, and often the puppy, who guilts me tremendously every.single.time. I leave the house if I don't bring her. She has a language she speaks when she can see I'm leaving. It's half dog half human and horrible. She begs and whines and jumps and talks in her language. Guilt, guilt.
3:15 arrive home after dropping off the carpool. Hang out with kids, feel incredibly stressed out realizing how much work I have to do still.
4:00 Ed arrives home, takes over sometime later after he's had much needed time to relax, just a half hour or so. The man wakes at 4:30 every morning and has been working 50 hour work weeks.
6:00 Dinner as a family
I try to work after this. Every single time I work I am interrupted an average of ten billion times. There is nothing inherently awful about this schedule expect I have six to eight hours of work a day to do and about four hours that I can actually do so. Ever told me 'all you like to do is sleep and work' on the phone and I burst into sobbing tears and hung up.

My nerves are so frayed that my arms actually hum, the hairs quiver.

I hate everything.

I am pleasing no one, doing nothing well.

I stay up late to finish work and then cannot function the next day.

I don't stay up late, my work gets behind, and my stress gets off the charts.

Even writing this, which normally relaxes me, is making me furious.

I have no breaks.

I love my children AND Lola is fourteen and in high school and actually walks into walls she is so absent minded so you can imagine how well she does the things I ask her to. I typically have to remind her of things four times. If I give her a consequence I feel badly because she's a great kid. Besides consequences seem silly for things like bring in the underwear from the dryer, I asked you four times, except for that the second time I have to ask her, I feel like I'm going to start screaming and never stop.

I hate everyone's underwear. I never want to see another fucking sock as long as I live. We can all eat crusty GMO pizza and dead animal patties for the rest of our lives for dinner every night for all I care. I'd rather eat a lizard tail than yell up those goddamn stairs one more time for Lola to get off her phone. If the puppy barks hysterically out back at 10pm when I take her outside to pee I will leave her out there for the coyotes. She barks, wakes my husband, who then can't go back to sleep AND then the neighbors can complain. Everyone wants something. If I ever have to stand in a school and talk about the merits of walking x way to school vs. x way I will chop my hair off and hold it in the air with a war cry. If I ever have to have aggressively cheerful conversations outside school gates again it will be too soon. I hate everyone's cups. We don't have cups! they cry. THAT IS BECAUSE THEY ARE ALL IN YOUR ROOM GROWING MOLD OR IN THE BACKYARD WHERE EVER HAS USED THEM FOR HER RECIPES. I hate toilet paper. Everyone can wipe themselves with their bare, puritan hands and then wash them in microbial, gut imbalancing, brain killing soap. If I ever see another school paper I have to sign again it will be tomorrow. I hate everyone's hair. I'm shaving the girls heads. They can have dreads, or a shaved head, that's it.

Ever asks for a snack an average of four times per hour.

Ever is not happy to be listened to. She must be ENGAGED. If you happen to say 'hmmm' in response to something she's said, she actually says, 'Mom, could you please use words when you answer me? When you say hmmm, I feel like you aren't listening.' SHE IS FIVE YEARS OLD. She talks approximately 98% of her waking hours.

When I go to the bathroom I am followed, every time, by Robert B. Parker, the cat, Katie, the puppy, and usually Ever. Ever is five. I thought she would be over this. But no. She stands there and wants to know what I'm doing.

What am I doing?

I am running. I am breathing. I am taking gratitude lists. I THINK gratitude, but I cannot FEEL it right now. I see it all around me. I see my children, my husband, I'm not stupid! I know how lucky I am!

Interrupt, interrupt, interrupt. My entire life is one long interrupted stutter. When my kids were very small I expected this, I relished it. I did not think I would be here with a five year old and fourteen year old. This schedule is killing me. I never want to touch another human being as long as I live. I can't work, I can't relax, I'm not working well or mothering well and I'm supposed to do this for another six weeks until Ever's kindergarten gets out at 2 and I can actually get some work done in one long stretch and not have to work off and on all day feeling guilty and being guilted and hating everything.

everything will be fine when the schedule changes. 
everything will be fine when the schedule changes.
everything will be fine when the schedule changes.

Monday, July 11, 2016

Some Things I've Had Published Lately

The Guardian- I finally got in The Guardian and then it went a little roughly. I had to comment in the comment section to explain why the story didn't end up making a lot of sense. Still, there it is, and I'm happy it's there. It's the short story of my medical debt.

TOGETHER- I'm proud of this piece on contempt in relationships. A huge topic that I was able to say something real about.

The Fix- I am SO proud of this one. The incredible life story of my good friend, Lacey. Redemption.

Monday, July 4, 2016

On The Fourth of July

When the thing happened, I was filled with the realization of all my wanting. I want, I want, I want. I am not enlightened although I was much closer, once. I lost the work. I stopped working. Light, is work. Directing your energy, over and over, toward the pathway, is work. I was busy. I had four children. I stopped working so hard on enlightenment. I worked on important things, my marriage, my mothering, my job, my writing. But the state of my soul, I let rest in the flash of sunset in my eyes, I let-in other words-something enormous rest in tiny increments, where it could not be kept alive. Expansion requires more space than moments of recognized beauty and awe. It requires work. Reading, prayers, meditation, journaling, time, hours, daily. 

When the thing happened, I was filled with wanting. I want so many things for you, I want so badly that it consumes me, it trills through me like warning bells, it hums through my neurons and I am so devastated with wanting for you that the bottoms of my feet hurt. The doctor would, If I asked her, surely name it something for me, and provide the malfunction of my body with a physical source. But I know that this is simply my emotions blackening the physical workings of my body. 

I'd give up 25% of my current happiness for you. I think I could survive there. I think that's a fair amputation that will allow me to remain functional, afterward. 

When the thing happened, I wanted many things at once. Some of them are:

for you to be free of fear.

for God to trade my arm, even my good arm, my right arm, my writing arm, in for your healing. i would give it in a painful way. i would cut if off myself. 

for you to accept your particular ill. we all have one.

for you to accept that you are killing yourself.

for you to accept that you are worth everything.

for you to accept that you are unconditionally loved and worth being so.

for you to understand how being a person who makes horrible mistakes but rectifies is possible and different than being a bad person.

for you to know, know, know, that you are not a bad person.

for you to know peace.

for you to know grace.

for you to accept help.

for you to accept help.

for you to accept help.

When the thing happened, I felt nothing all day. The fireworks happened, the screaming children at the fountain, sweat pouring down their faces, balloons bright red, blue, silver, gold, enormous salted pretzels, baby's yowling in strollers, large dogs on leashes, small dogs in sparkly outfits, banjos, guitar, fiddle, stomping, dancing, the American way, 
I felt nothing all day.

Until around the time when I did.

The feeling then was a terrible, tsunami panic, and a small death. A quick smothering and snapped neck. I am old enough to feel when a part of me dies.

When the thing happened, I thought many useless thoughts, and some helpful ones. Some of the things I thought were:

I hate myself for not being better.

I don't hate myself.

I might hate some part of myself, I"m not sure.

I hate that I notice all my thoughts.

This isn't about me. 

This is about me.

This isn't mostly about me.

My thoughts are self-absorbed and insufferable.

Why is life full of so much suffering?

Why do horrible things happen to good people?

Why do horrible things happen to anyone?

Why can't I stop this?

Why didn't I stop this?

What should I do?

Is this my fault?

The next step is to talk to X and then Y.

I'll do anything I have to do.

I will be strong for my family.

I can do anything I have to do.

Did I do enough?

What is the meaning of life when there is so much pain?

Why can't I stop this?


When the thing happened, I saw everyone I loved in highlighter, like the sun rubbed it's juicy face all over them. Bright and bold and beautiful. 

I saw every person in the crowd on the Fourth of July, their faces lit up like fireworks, their eyes full of pain and love and joy, black, brown, white, tall, short, thin, large, medium, nice, rude, sick, healthy, all the people, and I saw their faces alive and moving and the worth of each life passing on to the next life and how each person shone from the same source as the next and how much I loved them each and every one, because when the thing happened, I took the love I have for you and grabbed sit hard and shone it outward to the crowd in spotlight and screamed over their busy beautiful heads that I love you, I love you, I'd do anything, I'd do anything to find your unhurt face in that goddamn crowd.

Sunday, June 5, 2016

Endometriosis: Naps

Lola snapped this of me during my now daily afternoon nap. I am in pain all day, and the fatigue goes from being manageable to being bone-deep and grinding. You can see here the swelling in my hands, my veins, my facial tissue and under my eyes. I also get intense, hot swelling in my abdomen and legs and arms. The worse the swelling is, the worse my fatigue. It's nice to have these guys around for company.

I am eating the healthiest diet of my life. I am pescetarian now, as is Mr. Curry. I intend to do a blog post about our transition to a plant-based diet. I know from being this ill before that my diet, while it cannot cure me, can and does absolutely make this less awful than it could be. Eating this way ensures that I do have some good days, and that my overall brain fog is not as pervasive. When I eat to live, I can feel a clear separation between my healthy body and this illness living inside of me, vs it completely overtaking my system. It's empowering and helps keep the depression and anxiety that comes with all this at bay. 

Wednesday, May 25, 2016

Grandpa John Nash's Obituary/Eulogy

I was honored to write the remembrance for Ed's Grandpa Nash, a lovely man married 67 years to his sweetheart, Grandma Donna Nash.

John Robert Nash

John Robert Nash was born November 2, 1924 in Cleveland, Ohio. Some of John’s great family left behind include his beloved wife of 67 years, Mary Donna Nash, his three children, Scott Nash, Trenna Curry, and the much loved daughter Cindy Jan Fitzmaurice, who died young, leaving behind the legacy of her beautiful spirit and gorgeous laugh, as well as her cherished son, John and Donna’s grandson, Scotty Fitzmaurice, and her husband Greg.

Other grandchildren include Kari Gagne, Lori McDowell, Johnny Curry, and Kristi Christenson. John was blessed with many great-grandchildren, including Julia, James, Kayleen, Dakota, Ian, Lola, Ever, Christan, Reef, Jacob, Austin, and baby Carson.

John joined the Navy at age 18, and he left as Seaman First Class, E6, USNR. He worked and traveled for General Dynamics, putting in missile sites. He went to night school to obtain a diploma, while working during the day. Everytime his family was moved for work, John took his children’s hands in his own and found a new church. A devoted Christian, John found great solace in the church fellowships that anchored his family to each new town. Regardless of life circumstances–his own or yours–John was always happy to see you, and had that knack of making a person feel that he was specifically glad you were there. He is deeply missed by family and friends.

As a young man, John met his wife-to-be, Donna, where she was working at a movie theatre. They had a little bit of a romantic entendre, where Donna thought maybe John didn’t really fancy her, and John thought maybe she didn’t fancy him. John finally came up to Donna and said, “Would you go out with me?”, and Donna said yes. It was soon after that John proposed. Donna wasn’t sure, but John was, and “thank God he was” says Donna, because they were married in a loving partnership for 67 years. John and Donna were not only romantic partners, not only parents and grandparents, but they were best friends. They truly enjoyed each other’s company, and spent most of their free time together traveling, camping, attending church, going to lunch or dinner with family and friends, and enjoying their other family–their Boston terriers. Sparky was the dog left behind at John’s death, and Sparky joins Donna at home in grieving the loss of their beloved John.

John was an active, engaged, smart, brave, and hard working man of faith. He could be a snazzy dresser, as well, and often wore a smart cap and cardigan to family gatherings. He took great pride in providing for his family and  He loved camping with his beloved wife and grandchildren. From the time they were old enough to hold a marshmallow on stick, John took the grandkids desert and mountain camping. Not only were these times special to John and Donna, but they also created irreplaceable, life long happy memories for the youngest of the generation.

Thanksgiving and Christmas were also particularly special times in John’s life. After John’s children were grown and had children of their own, the family celebrated Christmas Eve with a “progressive dinner” which included the entire family going to two or three different houses, eating at each house and looking at Christmas lights on the way. Eventually they’d all end up at John and Donnas where the grandkids would usually act out skits or read from Christmas stories or sing songs. The house would be decorated to the nines, and John loved all of it: the stockings, the photos, the candy dishes, the tree, the joyful noise of a large and loving family.

John’s grandchildren were blessed to have a involved, fun loving grandpa who was a steady, dependable presence of love in their life. John had a mischevious grin and a love for a great laugh.The grandchildren were all delighted with his turqoiuse Toyota pickup truck that was outfitted with a special horn, a horn he’d be sure to honk every chance he could.

John loved to cook and was the main cook for the sweet twosome of he and his wife in all their later years. Waking in the morning, Donna would be greeted with John’s cheerful smile, asking, “What will we be having this morning?” meaning, what can I make you for breakfast? His omelets were especially delicious. On the holidays he would cook an entire feast for the family, refusing offers of help as he prepared each dish.

John and Donna loved to visit Laughlin, California and gamble, and John seemed to have an extremely lucky hand, because he usually won! Some trips would be John and Donna alone, and other times they’d be accompanied by one or more of their children and their spouses. Those trips hold many special memories for John’s family.

In the last years of his life as he grew ill, John was quieter, but he maintained the twinkle in his eye, and his playful spirit would shine through. He continued attending family events with Donna, and would often sit silently as the party transitioned, with a smile and a contented look on his face. The last family gathering at Easter, Donna asked John if he had anything he wanted to say. It is telling of the man and his spirit that he simply placed a kiss to his hand and waved it outward to the circle of his family, and said only, “Love.” John loved deeply and is deeply loved, and deeply missed. His life was a testament to faith, family, hard work and love.

Wednesday, May 18, 2016

Something Is Wrong With The Body

Over the last six months I've grown progressively sicker. It really started two years ago, but didn't kick into high gear until the last six months. And even then, I didn't see what was happening. I was doing what we patients often complain about doctors doing, and treating my symptoms individually as they popped up. And I'm great at that. Researching, refining my nutritional intake, my exercise plan, my stress coping mechanisms. Adding a supplement. More sleep. Less sugar. No sugar. No caffeine? No. Add the caffeine back in. Yet I continued to feel worse.

The anxiety got better- much better- but the symptoms started burning in hot patches around my body, little fires: pain in my arms and legs, waxing and waning. (Magnesium, B and D, dehydrated? Too much running? More leg support.)

Fatigue. Slowly creeping, drowsy, not enough sleep, can't sleep well, sleeping, sleeping...tired. So tired, all day, Suddenly I realized a week has gone by where I've napped for TWO HOURS every afternoon, and wake still tired. Always tired. Bone tired, so tired that holding my eyes open is difficult, and I close them standing in line at the grocery, or at a red light, for a moment's relief. (Anemic? Ferritin low? B, D, low? Too much sugar? Hashimotos acting up?)

Swelling. My eyes, hands, legs, swell. My eyes swell so much that I wear sunglasses on overcast days indoors at the store or Starbucks, picking Ever up from school. I don't want people to think I'm a bad person. Why would they think that? I don't know. It's my first instinct, fear. They will think I am a bad mother who stays up all night, or an alcoholic, not taking care of my child. This bothers me so much that I worry about what the cash register thinks, ringing up my grocery. I feel like he or she is wondering "What is WRONG with this woman?" Why do I feel so guilty for being sick? I really don't know. 

Abdominal pain. My abdomen swells. I look eight months pregnant. Ever asks me if I am pregnant. It hurts. Bright spots of pain light like a brand pressed into one spot: here, on my left side, there, on my right side- pain so bad I think I might have appendicitis, until it stops. Then pain over my belly button, hard deep pain that radiates to my back like a tendril snaking through the muscle and then leaking poison through the open mouth of an endometriomal lesion. I imagine the tissue hissing and smoking slightly as it turns brown. My last surgery, the doctor said I had lesions all up rib cage, my uterus, my ovaries, the tubes. And between my organs, long bands of hot pink or white scar tissue, adhesions, tugging things not meant to be tugged.

image from endofacts

Pain pain: pain my arms, legs, back, abdomen, coming and going. 

My insurance 'lapsed'. Such a benign word, easy in the mouth. We couldn't afford it, so it lapsed. Of course, immediately after I needed to see the doctor. I have a hardness, if you press deep enough, you can feel it under my aorta, which pulsing happily on top of whatever this is. The doctor felt it. "Well," she said, "if you had insurance I'd have you do an MRI. Or colonoscopy." We both sat for a moment. "What about an ultrasound?" she said. Although we both knew that was mostly futile, I did it. An ultrasound cannot see in the bowel, as it is filled with air, and an ultrasound cannot pick up endometriosis, if that is what is growing there, or scar tissue, unless it was thick enough, which it rarely is.

Ultrasound came back all good. And that is something. All the organs it could peer into pulsed back happily, working fine. Gallbladder, liver, all those juicy things lying inside of me, and the aorta itself gushed blood back and forth as it should. My bloodwork looks good. That is something.

And then the last two months, where I've gotten worse, it seems, every passing day. Some days are all right, meaning I feel OK and only take one nap and feel relatively awake otherwise. Some days are terrible, and I can barely wake up, I sleep off and on all day, and slosh in nausea and dizziness. So many options for what can go wrong with the human body, so many guesses! Could be my gallbladder and endometriosis. Could be just endometriosis, infiltrated to bowel. Could be intense perimenopause. Could be pancreatitis! So exciting. It could be the worst thing. I can't go there, because what the fuck am I supposed to do? Freak out? I already have that covered. Smothered.

My last excision surgery for endometriosis was around 9 years ago. 5 years ago, I had a C-section, my first, with Ever's birth. C-sections can spread endometriosis- a fact I didn't know at the time. The cells get washed with the waves of tugging internal tissues and blood, pulled into foreign shores, like my guts. 

So that is possible.

All I know for sure right now about my body is that I am very sick, getting sicker, and something is wrong. We plan on getting insurance next month. No one is qualified for CA Covered Care anymore unless there was an emergency to explain your lapse. We didn't have an emergency. No tornado ripped through our roof, no one was injured on the job or knocked up. Just poor, sometimes more so, sometimes less. 

I am eating vegetables, fruit, beans, nuts, and a small amount of fish or chicken. I take the vitamins. I do the exercises. I breath the infuser's essential oils. 

I am in a period of anger right now. I am deeply sad and angry that I am incapable of writing for five hours straight. Finally, my life is in a place where things are lining up. My book is almost done with my final edits, ready to be read by the agent. Writing jobs are happening, I am being published every week, and paid for it. Ever is in school all morning. And the last month, I often spend that time blinking like a fish in front of the computer until I give in and go back to sleep.

And yet I'm so excited about life: so many things fascinate and propel me! There is so much to do, so much to learn, and I love my family, I love being with them. When I feel well, there's almost NOTHING I cannot have a good attitude about. I have worked damn hard over my life to have a good attitude. I won't lose it because of this. But right now, it's temporarily winning.

Just for a little bit, I'm going to cry a lot in the bathroom, and feel angry. 

When I lie down, I often have a hard time falling asleep because despite how exhausted my body is, my mind is so awake. I think of all the essays I want to write and get excited. I think of the yard work I want to do, how cute I want to make my backyard, and I get excited. I think of the things I want to do with Lola and Ever and feel excited. I think of running and feel excited. I think of Mayan ruins, and studying their ancient culture more- the books I'm reading, the documentaries I watch at bedtime- and get, you guessed it, excited. So much to DO! I don't want to be SLEEPING. 

So for now I lie with my eyelids flickering and struggling against the weight of my own body, waiting for what is next. Patience, grasshopper.

Sunday, April 17, 2016

Asbestos Awareness Week and the story of Heather Von St. James

This year, April 1-7th is Global Asbestos Awareness Week. I missed the week to post this (obviously) through my own dang fault, (autoimmune and work overwhelm), but this is very important, so am posting late: better late than never absolutely applies here.

During this week and all year round, it is important to be aware of the fact that this toxic material is still not banned and in fact continues to affect many people. Asbestos is a naturally occurring mineral that was used in thousands of commercial products, homes, industries, and so much more. Inhalation of the fiber can cause the dangerous but preventable cancer mesothelioma. One such example of the impact this material can have is the story of Heather Von St. James.

    Heather Von St. James was a new mom when she was diagnosed with mesothelioma, and was told she wouldn’t live to see her baby girl grow up. She learned that she was exposed to asbestos secondhand, after wearing her father’s work jacket as a young girl. He worked in construction and drywall, and carried the fibers on the very jacket she would sport around the house while doing chores or playing outside. Inhalation of these fibers were the reason that many years later, she was given such a bleak diagnosis and told she wouldn’t live past 15 months. After undergoing a risky surgery to remove her left lung, chemotherapy, and countless sessions of radiation, Heather was declared in remission and is one of very few 10 year survivors of this cancer. But the initial exposure and surgery would be something she felt the effects of for the rest of her life. 

    This is why Heather and The Mesothelioma Cancer Alliance work so hard to spread awareness about Asbestos Awareness Day. Heather wants to see a ban on the harmful toxin that caused her cancer, as it is still used today and has not yet been made illegal. Her hope is to prove that with hope, the odds don’t matter. This year during AAW, be aware and safe. Awareness and action are the only two things that will one day cause there to be no more mesothelioma. 

Monday, March 21, 2016

SB-277 (Publishing My Own Vaccine Research Piece, Since Publications Are Too Scared To Do So)

Hello –––––,

Thank you for the response! I don't know if I'll be able to get this published since trying to put any information out there that is not completely pro-vaccine is near impossible.
However all the data I present in this piece is mined the same way I pull data for any research piece- carefully culling from reputable and documented sources, from experts
like Dr. Aaby, who I quote here, and who is one of the most highly respected vaccine scientists in the world. If editors had to be experts on every piece they ran, only niche
magazines would exist, instead of magazines and publications which publish journalism that presents research in an interesting way. I hope in the future you will reconsider 
placing some well-researched pieces about both the benefits and concerns of vaccines, for I believe deeply that journalism is at its finest and most crucial place in history when 
it illuminates subjects that are silenced, difficult and important.

Thank you,
Maggie Ethridge

Sent: Monday 10:21 AM
To: Maggie
Subject: Re: Freelance Pitch: SB-277

Hey Maggie, thanks for following up. We're going to pass on this—we tend to steer clear of the vaccine debate since none of our editors on staff feel qualified to pass medical judgements.



On Mon 1:14 PM, Maggie <> wrote:

Hello ____,

Good morning! I am wondering if you had a chance to review my below pitch and attached piece. I'm happy to answer any questions.

Thank you,

After the third or fourth refusal to even consider publishing something that is not entirely pro-vaccine, I am publishing the below piece myself.


“There are movements in almost every state to mandate vaccines and rob parents of their constitutional rights. Parents must retain the right to be informed first, and then consent to medical treatment for their children free of coercion, manipulation or fear of Government intrusion.
I have two beautiful granddaughters, both vaccinated, I vaccinated all three of my children…but I made the decision, not the State.
The current voluntary vaccination program is already proven effective at protecting Californians against life threatening complications and death associated with vaccine preventable illnesses.
There is no medically defined epidemic in or near California that warrants such legislation. The language of California Senate Bill 277 gives the government unlimited power to add new vaccines to the currently mandated school entry immunization battery without hearing or oversight, and removes the right of parental objection based upon sincerely held religious or personal beliefs.
I fight against Federal Preemption… I fight against Government loop holes for polluters… I fight against the use of the Public Drinking Water systems as medical dispensaries…and therefore, in order to be consistent… I am against Government mandated medical decisions for my children.”
-Erin Brockovich on SB 277

When There is Risk, There Must Be Choice

SB 277 is a bill that passed June 30, 2015 which enforces mandatory vaccinations for all children attending public and private school, child care center or nursery, family day care or development center in California. Introduced by Senators Pan and Allen, this bill erases parents's right to informed medical consent in order to be permitted to participate in what is legally every child's right: a free public education.

It was the small measles outbreak stemming from a California Disneyland that launched SB 277. Headlines across media channels were unavoidably hyperbolic: here's one from The Washington Post: Disneyland Measles Outbreak Strikes In Unvaccinated Hotbeds. US Measles Outbreak Reaches Critical Point- that one from CNBC. And anti-vaxxers ( that lumpy, lazy term ) are even to blame for Mickey Mouse being Stricken With Measles, according to Mother Jones. Or this: Vaccine Deniers Go To Disneyland, It's Pure Mayhem, from Healthline.

Collecting hell in a hand-basket from these headlines, we find the words: strikes, hotbeds, critical, stricken, and mayhem. These words for a disease that sickened just over 200 people and ended in zero deaths. The measles vaccine has been a life saver. Yet the headlines act as if the small portion of unvaccinated or delayed vaccinators were single handedly bringing something akin to ebola directly at our doorstep. The progoganda was swift and effective in whipping up fear:

Measles in California.
Measles possibly spreading in hotbeds, striking mayhem.
Will anyone die?
We have to act now, and create a law, forcing parents to vaccinate their children in order for their children to obtain a free educuation.

The online magazine SafeBee wrote what I saw repeatedly in my Facebook feed: "The bottom line is that children or adults shouldn't have to die from the measles in the U.S." And despite the fact that California's current vaccination schedule is working, and no children nor adults did die from the measles, SB 277 was created- as the answer to a problem that didn't exist, but a fear that most certainly did.*

The basis for SB 277 is coercion, via the removal of a right (the right to a free public education) unless following the vaccination schedule set out. The American Medical Association speaks to coercion as 'threatening or causing harm through physical or mental suffering'. Guidelines from the AMA supports patient rights, and condemn the use of legal intervention to force compliance with treatment.

Forbes, when summing up the core message of a bill like SB 277, wrote "Want to send your kid to school? Make sure he gets his shots, or have a very, very, very good reason not to have." And there is the core problem with this bill, and what should be every parent's most pressing concern: who gets to decide what a 'very, very, very good reason' is, and is it legal that if you- the parent- strongly disagree with a doctor who concludes your reason is not one of the very, very, very good reasons, you have to choose between allowing your child to have a vaccination that you believe may seriously harm your child, or losing your child's right to a free education?

SB 277 is coercive, as home-schooling or charter school is not a viable option for most parents, for a variety of reasons, including financial. That a parent who is being forced to choose between their child's education and a vaccine that they believe will seriously harm their child is experiencing 'mental suffering' can be proven through the stories of invidual families, families like the Aquinos.

Elizabeth Aquino is a Los Angeles mother of three and the author of  the memoir Hope For A Sea Change, the chronicle of her daughter Sophie’s idiopathic seizure disorder that she- and her current pediatrician- believe was triggered by her initial DPT shot in March of 1995 when Sophie was two months old, and then exacerbated by additional vaccinations at four and five months.

“Our daughter has had refractory epilepsy and severe developmental disability and is now 20 years old. She requires 24 hour care, is non-verbal, incontinent and is completely dependent on caregivers. She has been on 22 different medications and only recently found partial relief from daily seizures with cannabis oil. Her brothers, now 14 and 17, have been partially vaccinated in the last two years. As a seasoned parent of a child with severe special healthcare needs, I am appalled at the coercive nature of SB277 and believe emphatically that medical decision-making should be shared by caregivers and their pediatricians. I do not believe that my child should be the "rare" sacrifice for the "greater" public, and we need more and better research on current vaccine policy and scheduling.”

Luckily for the Mrs. Aquino, she is able to obtain exemptions for her sons. However, another doctor may not have signed off on this exemption, as Sophie was never proven to be vaccine injured through the Vaccine Injury Compensation Funds courts- courts that Mrs. and Mr. Aquino didn’t even know existed at the time of Sophie’s decline.

Many doctors would not allow exemptions without a specific diagnosis for the child in question, and this is the concern of D.K., a San Diego mother of two young boys. Her oldest son, now four, was fully vaccinated at two years old. He was struggling with severe aggression, sensory issues, hyperactivity, and inability to focus- despite the family’s healthy eating and lifestyle, which included strict media restrictions and plenty of outside play.

After becoming increasingly concerned about the causation behind her son’s health issues, D.K. began researching the vaccines that her son had received, and decided to abstain from further vaccinations. She was able to obtain an exemption for her older son despite lacking a clear diagnosis for his health issues, which have included severe sensitivities to environment and food, and have ended with D.K. implimenting the Fiengold diet for her son (a popular diet that claims to address various health ailments)

She explains, “If a single M&M caused a three day reaction, what issues might vaccine cause? Perhaps already had? Considering the amount of vigilance required for us to a achieve a livable level of calm in our home, I decided not to risk an irreversible cascade of more issues. I  know and have seen over and over again that chemicals and certain preservatives cause neurological and behavioral issues for my son, and I know vaccines contain those same chemicals and preservatives. How can I knowingly cause him harm?

Because of the issues with my first son, I have not vaccinated my second son per schedule. He has exactly none of the issues of my first born. My family, including me, has a history of autoimmune disease. Perhaps our immune systems react in a way that most normal kids don't? I am not sure what the answers are, but I do know that I vehemently disagree with the passage of SB277. I believe, thankfully, very few family need access to personal exemptions, but it is extremely important for those families that desperately do, to retain those rights. I know my child best, and as I respect the medical profession, they are partners in my child's health, not the directors.

To deny my {youngest} child's right to a free public education in order to force blanket vaccinate, despite having legitimate concerns based on health history and a family history of autoimmune issues, is frankly shocking.”

Proponents for the SB 277 bill cite that fear of 'incredibly rare' vaccine side effects should not be reason to partially vaccinate or use a delayed schedule, stating that as you use a seatbelt, so you should use vaccines they way you are told. This analogy is flawed for two reasons: the long-term side effects of vaccines (including sex-specific effects) are not researched and are unknown due to both lack of research and lack of time passing since the advent of the U.S. current vaccination schedule, and the the number of children who are reported as vaccine injured do not accurately reflect the actual number of children injured, due to the incredibly arduous and time consuming process- years, with endless paperwork and documentation and burden of proof in court- of vaccine court, all this for parents in the midst of struggling with their child's sudden and totally devastating health crisis. As you'd imagine, many parents never follow through with this process, and the stories of ones who do- even successfully- allow a glimpse into how unacceptably awful and lengthy the process is. 

In a Yahoo article profiling a series of parents with vaccine injuries, the Lawson family, whose baby daughter was vaccine injured after the MMRV shot, spent four years in vaccine court before being awarded $1.5 million dollars. A must-read article in The New York Times, written in 2011 yet perfectly relevant, highlights the disasters of our current vaccine court. The family featured in the beginning of the piece had allowed their baby, Jeffery, to have a precautionary brain scan due to a car accident, and the MRI results were normal. Days later, Jeffery had the DPT vaccine. Days after this, he began seizing. When new MRI’s were done, there was blackness where once there had been the gray matter of his brain. Jeffery’s family went through the vaccine court under the U.S. Court of Federal Claims, and their claim took eleven years to resolve.

Jeffery and family were awarded $7 million dollars in cash and medical care, although it then took another three years for the family to receive the funds.

The Associated Press did an analysis of 14,500 cases in the vaccine court, conducted over a 100 interviews, and read hundreds of decisions made in the vaccine court. Their findings were a collection of serious failures and flaws in the vaccine court and compensation system, including the fact that many of the lawyers hired by the government to argue vaccine injury claims have ties to the pharmacutical industry, and this: “Lawmakers designed vaccine court to favor payouts, but the government fights legitimate claims and fails its obligation to publicize the court, worried that if they concede a vaccine caused harm, the public will react by skipping shots.”

Dr. Peter Aaby is a Danish vaccine scientist who heads the Bandim Health Project . This organization, located in Guinea-Bisseau, is deeply respected world-wide for their unprecedented body of research on the non-specific effects of vaccines, or NSE. The non specific effects of vaccines refers to effects on human beings from vaccines other than simply preventing the disease they are intended to do.  Dr. Aaby speaks and presents at WHO conferences and other vaccine research conferences, and has spent the large part of the last 30 years in Africa researching vaccines. All of his important research is available on line, in the Journal Of American Medical Association as well as categorized in the Bandim Health Project. A book which collects the body of research is also available on the website for free. He is one of the only scientists in the world researching the non-specific effects of vaccines, and his research shows that there are both surprisingly negative and positive effects of various vaccines, influenced by the sex of the child as well as the order in which the vaccines are allocated.

For example, his research finds that giving the measles vaccine- the singular vaccine- decreases overall cause of death for children. His work also found that when you give the DTP in conjunction with the measles, the result is the exact opposite- in fact, the death rate soars, especially in females. The implications for the U.S. vaccine schedule are clear: we don't know what the long term effects of our vaccine schedule are; we are not funding research to find out.

In the comprehensive BBB series, The Vaccine Detectives, Dr. Aaby’s historical research on the measles and DPT vaccine are chronicled. The series includes a number of interviews with vaccine scientists working at the time for WHO- the World Health Organization- as well as scientists working with Dr. Aaby’s team at the time. When asked why they believe the critical and scary research conclusions on the harm of the DPT and measles scheduling was not being actively pursued with follow up research by WHO, they responded with the same deduction the AP report in the New York Times article came to: that the scientific community was afraid of revealing or pursuing the information. Why? Because people might not vaccinate.

The then Dr. Mulholland- now a professor working for the London School of Hygiene, a widely respected institution- said “It’s worrying…some years ago I did a calculation of what this could mean in terms of mortality, locally, and it’s quite alarming. Why is it that the international community is sitting on their hands and ignoring this, that’s a good question.”

The work Dr. Aaby is doing- in addition to the answers it is providing- shines a light on all the missing answers, the facts we do not know about vaccinations’s long term effects on children's mortality and health.

Another concern that non-vaccinating, partially vaccinating or delayed vaccinating parents have is the question of whether the trace amounts of mercury in vaccines are causing health problems in children. The movie Trace Amounts highlights one man's journey with a vaccine injury that led him to investigate the trace amounts of mercury that remain in vaccines, and campaign for their removal. The are scientists who speak aggressively about this concern, such as Suzanne Humphries. Her short video explaining the concerns about the trace amount of mercury in vaccines is edifying.

Jennifer Margulis, Ph.D, Co-Chair of Oregonians for Medical Freedom and the author of Your Baby, Your Way, writes on her website:

"According to research published in the Journal of Human Toxicology, America has the most aggressive infant childhood vaccination schedule in the world, and much poorer infant health outcomes compared to countries with fewer vaccines. Vaccines are so powerful, with so many long term unknowns, that only a parent can make this serious choice for their child, and it is is illegal for a parent to be coerced into compliance with threat of loss of public education."

Returning to the commonly used seatbelt analogy, we see that in forcing parents to vaccinate their children on the current U.S. schedule, we are asking them to disregard all their concerns- including, but not limited to, the ones I’ve illuminated above- for their child’s health and comply, or lose their child’s right to public education. We are not asking people the equivelant of  ‘put on a seatbelt’- an action that is almost universally accepted as safe and greatly reducing harm in the event of a car accident, accidents which are unfortunately common.

Instead, we are asking people to force an action- vaccination on the U.S. schedule- on their child that could have serious, negative effects on their child’s health. An action which has almost no research on the long-term, nonspecific effects on health, in order to reduce the chances of getting diseases, not all of which are deadly in modern first world countries (such as measles), nor proven harmful ( such as chickenpox); we are asking parents to take what they perceive is a large health risk to their child- parents like D.K.- for which research is not being conducted in the U.S. to allay these points of concern. This is a different discussion all together from debating if vaccines work. Like Dr. Aaby, the majority of parents I know are not concerned about the overall efficency of vaccines, but are instead concerned with the long-term non-specific effects.

The burden is on the state to provide the least restrictive measure possible to protect all children, and the burden of proof that this bill was necessary has not been met. In fact, vaccination rates in California are over the necessary percentage for herd immunity. Children with communicable diseases attend public school, protected by the ADA-the Americans With Disabilities Act- with strict laws that put the onus on the school system and physicians to handle the disease, including having a physician access the risk to determine how to avoid transmission. Yet a child who is perfectly healthy and never left the U.S. would not be able to attend school because they do not have the chickenpox vaccine.

Another concern those against SB 277 have is the machine behind the bill: money. This recent article in The Sacremento Bee highlights the facts: "Pharmaceutical companies and their trade groups gave more than $2 million to current members of the Legislature in 2013-2014, about 2 percent of the total raised, records show. Nine of the top 20 recipients are either legislative leaders or serve on either the Assembly or Senate health committees.

Receiving more than $95,000, the top recipient of industry campaign cash is Sen. Richard Pan, a Sacramento Democrat and doctor who is carrying the vaccine bill." Senator Pan, who introduced SB 277.

Who led and pushed the creation of this bill? Not parents. Not even parent's representatives. Pharmacutical lobbyists created SB 277.

And then, we come to number eleven in SB 277, the slipshod wording allowing the dam to burst when it may. What diseases must your child be immunized against, according to SB 277? The bill lists ten, and then, this:

(11) Any other disease deemed appropriate by the department, taking into consideration the recommendations of the Advisory Committee on Immunization Practices of the US Department of Health and Human Services, the American Academy of Pediatrics, and the American Academy of Family Physicians.

Any vaccine, all vaccines, can be added to this bill.

Not only are there immediate problems with SB 277, but the bill poses serious questions for the future with no current answer. What measures will the state take to ensure that a child without the full demanded vaccination count does not attend public school? Will they physically pull children out of class if they become behind in their shots? What will the consequences be to parents who bring their child to school? What are the physician's specific standards of approval required to be to allow for partial or delayed vaccination? Who is creating oversight on these physicians? Who will advocate for parental rights when the decisions are debated?

It is not justifiable, neither through statistics of vaccinations rates for California, nor is it legal for a child being denied a spot in public school because they are missing a vaccine, or on a delayed schedule. And it wasn't necessary.