When the girls were little, I signed them up for a program at the local park where they could learn to ride ponies. They sat in a barn and learned about safety, donned bike helmets and boots, and climbed atop plastic step-stools to hoist themselves up into the saddle. Over a period of weeks, they learned to groom, feed, saddle, and ride these gentle creatures while I stood and snapped pictures on the other side of the fence. After each lesson, they were excited to tell me about the ponies’ names and temperaments and the things they had learned about how to interact with them. When brushing the ponies, they knew to pat their way around the hind end so that the animals always knew where they were, and if they were walking near the ponies but in a blindspot, they were taught to do an “elephant circle” so as to be out of reach of a well-placed kick should the pony get spooked.

One thing you should know about me is that I prefer patting my way around to making elephant circles. If there is an elephant in the vicinity, I am the person who will point it out. I will tell you about it, indicate exactly where it is, tug on your sleeve to alert you, and describe it in great detail. Even if you indicate that you are not interested in anything having to do with this great beast in your midst, it is unlikely that I will stop trying to talk about it. In fact, if I am particularly affected by the sight of this elephant and you actively try to turn my attention elsewhere, I am likely to take you by the hand and lead you to it, make you stroke its leathery flesh, lean in for a sniff and ask you to look it in the eye.

It is not a characteristic of mine that all people appreciate.
I understand.

The other thing you should know about me is that this characteristic is necessary for my survival.

Most of my childhood was spent hearing that crying was an unnecessary activity. That sadness and fear were altogether useless. That the preferred emotions were happiness or anger and anything else was “wallowing” or “self-pity.” From time to time there were entire herds of elephants living in my house that went unacknowledged. The adults perfected elephant circles as they went through their days, picking their way carefully through and around and underneath so as not to discuss any subject that might be uncomfortable. Living like this makes a person feel a little crazy. As a kid, I tried in vain to point out the elephants and was either ignored or reprimanded. I began to believe that I was the only one who saw them, that there was something wrong with me. Or that my ability to see them – my “sensitivity” (spoken with a sneer of derision) – was a fatal character flaw. I alternated between jumping up and down and pointing and cowering in my room wondering whether there was something seriously wrong with me. Eventually, I learned to avoid the rooms where they lived altogether and take cues from other people regarding which things were ok to speak of and which ones were not.

My tactics as an adult are quite the opposite. I have come to realize that, for me, ignoring the elephants is an exercise in self-destruction. To deny my feelings about any particular situation is to pretend that they don’t matter. So while I won’t ask you to see the elephant in the room the same way I do, or to experience the same emotions in response to it, don’t be surprised if I lead you to it and describe it in great detail so that you are forced to acknowledge that it exists. So that you might begin to understand why it is something that is important to me. So that at least we can agree on one thing – that I am not crazy. I apologize if this makes you uncomfortable, but I’ve learned that leaning into discomfort is the best way to define its edges and begin to loosen its hold on me.

I will admit to being altogether unsure of how to begin. My faithful companion of over a decade is failing and, while he may live for another several weeks, things are getting rough.

We were away for three weeks at the beginning of the summer and I knew at that point that he had a small tumor on his liver and a few more “bumps” on his skin in various places, but none of them were causing him any distress. Indeed, he was eating and drinking normally and he still raced for the front door with a shoe in his mouth when the doorbell rang. The house-sitter said that had I not told her about the tumors, she never would have known.

By the time we returned, two of the bumps on his neck and shoulder had grown significantly and within another day one of them burst open. The vet said that it was cancerous, but given his age and medical status, surgery was not likely to be helpful. Still, he does not show any signs of being in pain, so I dutifully change the bandage a couple of times a day and make sure it doesn’t get infected.

Over the past three weeks, he has both surprised me with his continued health and given me a scare or two. The tumor on his liver is now the size of a lemon, the one on his shoulder about the size of a lime. He has at least six more that I can feel along his back and head that grow larger every day. He is down to eating once a day and has less energy than before, but his eyes still sparkle when I come in the room and his tail wags. He makes it up the stairs to lie next to my side of the bed every night and perks up when I offer a walk. Last Thursday we had 15 people over for a backyard bbq and he made the rounds, poking everyone in the thigh with his nose and demanding to be petted with his tail thumping wildly. He slept for the rest of the night after making sure each and every guest acknowledged him.

Our walks are very different than they ever were. He also has some dementia, so it isn’t strange to have him stop suddenly in the middle of the sidewalk or street and look at me in utter confusion. Other times, he refuses to walk unless we go on his chosen route, but that route has increasingly become a simple straight line away from home and when I determine that we must turn back or I’ll be stuck carrying him, he plants his feet stubbornly and won’t move. The tumor on his neck means that I can’t tug on the leash to make him move, and today I was considering picking his 70# frame up and shoving him forward to get him moving. When I wrapped my arms around him, he sat down and licked my face. I waited a few minutes, coaxed sweetly, cursed the fact that I hadn’t thought to bring treats to entice him, and finally did the parent-of-a-toddler-at-Target move. I left. I dropped the leash, turned my back on him, and walked away (don’t worry – it was a quiet residential street and there were no cars around). After about 20 paces, I snuck a look over my shoulder and saw him slowly following me.

I don’t know how much longer we will go on like this. I have spoken with the vet who assures me that  I’ll “know” when it’s time, and I hope he’s right. At this point, he seems happy, he isn’t indicating that he is in any pain, and he is still interested in eating and drinking. I am learning to pay really close attention to his cues and slow down. If he wants to take 40 minutes to go around the block, sniffing and lying down in the cool grass for a bit, I’m game. If he would rather snack on peanut butter and bison treats than his kibble, I’m fine with that. And if I need to lie down on the floor with him and scratch his ears several times a day, it’s the least I can do for this magical creature who has loved me unquestioningly and wholeheartedly for eleven years or so. The fact that he continues to just be who he is and look to me for comfort when he needs it is all the encouragement I need to drop what I’m doing and just hang out.

Because how do you write about the things that aren’t yours to tell? How do you begin to separate what is yours and what isn’t?

It is a tricky proposition, this. And not only because of the risk of hurting someone I love, but because of what it means to me. Sorting through the seminal memories and moments in my life means really looking hard at where my head was, where my heart was, and what I knew and wanted at the time. It would be easy to look back with the accumulation of experience and wisdom riding shotgun and nod knowingly in the direction of what should have been, but that doesn’t make for a true story. It smacks of justification or pity-partying and paints a picture of Right and Wrong that doesn’t exist in life, to be sure.

The hardest bit is in the owning of my entire, smelly backpack of crap and roses.

Own it, someone says, urging us to stand up for ourselves and not be ashamed of who we are. It sounds empowering – a battle cry for my generation. Owning it is frightening.

Owning it means I acknowledge an attachment to the story and once I’m attached to something, the idea that it could be taken away is frightening. Something owned can also be un-owned. Writing about other people’s shit is the epitome of non-attachment. It says, “That isn’t mine, but I’ll tell you all about it and together we can exchange looks expressing how happy we are that it isn’t ours.” There is a complicity inherent in telling someone else’s story. Telling my story – owning it – feels very lonely and vulnerable.

Owning it also opens me up to the risk of becoming defined by the story I tell; having it morph into a shorthand by which other people describe me or think they ‘know’ me. The complicity has shifted to include everyone else but me as soon as I own my story and tell it honestly.

I’ve discovered that it is so much easier to solve someone else’s problems than it is to deal with my own. I once told a friend. She agreed. And now, when I sense the urge to find the cracks in someone else’s armor, I am prompted to wonder whether it is because I am ignoring my own.

Ultimately, the only lens through which I can see life is my own, and that means that the only story I have the right to tell is mine. Anything else is just make-believe. And, it turns out, I’m not much of a fiction writer, so I guess I’ll just keep sifting through to find the stories that are mine.

Saturday, Sunday, Monday I had hours for writing. The luxury of time meant that I woke early, poured coffee, sat at a rented desk and pounded the keyboard until I had 60 pages. Walks along the beach, more coffee, shuffling pages of memories and piecing things together.

Tuesday and Wednesday I was back in my normal life – driving, cooking, shopping, working at my ‘other’ job which doesn’t entail writing so much as networking and trying to hawk what I’ve already written. But this morning, I could see a way clear to more writing.

First, the tasks that launch the day – packing lunch, toasting bagels, walking the dog.

My mind drifts and swells. I marvel at how much of my writing happens while I smear cream cheese on the bagel, tug the dog along our familiar route, stand in the shower.

I pass dogwood tree after dogwood tree, loaded down with so many blossoms that I can’t see the leaves beneath them. I am struck by the sheer weight of beauty, how it weighs down the branches, the stems of peonies curving to rest the flowers on the sidewalk, their scent rising up to me. These plants with their short-lived bursts of shocking glory are my favorite. The ones with the less showy, compact blossoms that live on sturdy stems and branches barely merit a glance. What does that say about me?

There is a Frito-Lay truck parked along our route to school and I think about how, sometimes, I have an uncontrollable craving for potato chips. Not often, but when it comes it is intense. I imagine being the driver of that truck, pulling over to a quiet alley, climbing over the seat to get to the boxes and boxes, ripping open a bag and plucking one paper-thin chip out and then another and another. Wiping the grease on my pants.

We pass an apartment whose living room window frames a birdcage and I think, “Do people still keep birds as pets?” I remember my sister’s parakeets – one blue and one green. The biting, ammonia smell of their cage, the wooden swing, the way she had to put a blanket over it at night to keep them quiet. What would have happened if we had simply turned out all of the lamps and let the actual night take over? Would they have slept?

Everyone else is gone for the day but there are imprints everywhere. Stray shoes, crumbs on the counter, a favorite pencil on the kitchen table. I am alone to write but the end of the day calls. What’s for dinner? Are there towels clean? What time is my guitar lesson?

 
It seems that every new milestone my kids hit offers me an opportunity to examine why I do the things I do. I often fall into the trap of thinking that everyone does things the way I do, simply because I’ve always done it that way. Fortunately (?), my kids challenge me on that every once in a while.

In the past year, Lola has begun commenting on the way I drive. I don’t know if it’s because she is watching her sister learn to drive or because she is old enough to sit shotgun or if it has something to do with her drinking coffee and wearing makeup these days. All I know is that she gets annoyed with me for not stopping on a dime.  In the morning, the route to her school is pretty bumpy with potholes and lots of construction between here and there. She often brings a cup of coffee with her to drink on the way, but because of the condition of the road, it’s a dangerous proposition to try and drink it unless the car is fully stopped.  Putting lipstick on is pretty treacherous, too, if you only want to apply it to your lips. And therein lies the rub.

I never really paid attention to it, but there is this game I play with myself when I drive that started back when I was a teenager driving a stick-shift. This game got more compelling when I started driving a hybrid car. The goal is to never come to a complete, full stop and avoid using the brakes if at all possible.  When I was driving a manual, I would try to slow the car by anticipating the traffic in front of me and simply downshifting, and I considered it a win if I could successfully slow down enough for a red light to stay in second gear and come up on the car in front of me (or the light itself) just as the light turned green, so I could begin to accelerate without ever hitting the brakes. I got really good at it.

Don’t judge me.

When I got my hybrid, I was fascinated by the display screen that indicates whether the car is using gasoline or the electric battery. When you’re coasting or apply the brakes, it shows you that you’re recharging the battery, and when you accelerate, you can see that you’re using gas or gas plus the electric battery.  In the first few weeks I had the car, I watched (probably WAY too) closely and loved the idea that I could coast to a stop – or nearly a stop – without using any gas at all. The game intensified.  I have nearly perfected my technique on the routes I normally drive, unless there is a huge traffic jam. I watch for pedestrians, cyclists, and cars ahead of me and gauge when to take my foot off the gas and begin coasting so that I can merely slow down and then speed up at the next opportunity, depending on whether it’s a red light or a person crossing the street.

While it isn’t necessarily forefront in my mind (I’ve been driving for nearly 30 years, so it’s pretty second-nature at this point), there are times when I’m aware of it and I mentally congratulate myself for a particularly tricky maneuver. But it’s all in my head and, until recently, I was the only one who knew what I was doing. Unfortunately, while I’m busy patting myself on the back, Lola is in the passenger seat, thermos or lipstick at the ready, anticipating her next opportunity to pounce and get a little satisfaction. She doesn’t dare put anything to her lips unless I’m totally stopped for fear of wearing hot coffee or smearing makeup across her cheek as I accelerate.

Eve asked me to take her out for a practice drive yesterday and I was laughing as I told her how Lola yells at me every morning, saying, “Mom! Seriously! Just stop already, would you? Quit slowing down!”

I explained the game I play and Eve’s hands squeezed the steering wheel hard, her knuckles turning white. She slowly turned her head toward me.

“That’s why you always freak out when I stop at the last minute behind another car, isn’t it?”

“Hmmm. Oops….  Sorry.”

“Geez, Mom. Not everyone drives like you. Maybe nobody.”

She might have a point there. When I think about it (which, frankly, I never really did before now), it’s pretty obsessive and more than a little weird.

I wonder what other things I do without realizing that they are odd.
I suspect I’ll figure them out as the girls get older.
Crap.

Part 1 is here
Part 2 is here


I would like to go on record as saying that I don’t think vaccines are a bad thing, in and of themselves. I do think that they have served an important function in our understanding and the prevention of many diseases. However, I don’t think there is such a thing as a panacea, as much as we would like there to be, and over the past few decades, the medical-industrial complex has become so interwoven with the public health system that I’m not certain it is serving the people it claims to serve any longer.


One example of this phenomenon lies with the development of HPV vaccines. I wrote about this in 2013 here, detailing my issues with the vaccine Gardasil. Since that time, more countries have either banned or started investigating this particular vaccine because of the high number of adverse side effects, and yet in the US, our public health officials continue to advocate for its use within an even wider population. It is now recommended that boys have this vaccine and that all children have it starting at a younger age (an age at which NO trials have been done to determine safety or efficacy). If we were truly interested in long-term public health and not making money for pharmaceutical companies, we would proceed cautiously with this vaccine which has been shown to have some correlation with teenage-onset menopause and severe neurological issues.


Another example of the rush to develop vaccines that (I believe) are unnecessary is the chickenpox, or Varicella zoster, vaccine. Ours is one of the few countries that routinely and widely vaccinates our children for this disease that has not been shown to be deadly in the vast majority of cases. This article found at the National Center for Biotechnology Information illustrates the reason why, after much scrutiny of the matter, the United Kingdom does not push chickenpox vaccines on its children as a matter of routine. The conclusion of the physicians there was that there are two main areas of concern regarding this vaccine:

1. “…introduction of a routine childhood vaccination drives up the age at which those who are and remain non‐immune get the illness and chickenpox tends to be more severe the older you are,”


and



2. “…what will happen to the epidemiology of shingles if chickenpox vaccination is introduced in the United Kingdom?”



The answer to these questions from pediatricians I have taken my children to are as follows:


1. If your kids don’t get the disease naturally now, because all the rest of the kids are vaccinated for it, they will more likely get it when they’re older, when it is much worse, so they might as well follow the crowd and get the vaccine. What they neglect to mention is that the efficacy of the vaccine has been shown to be between 3 and 5 years, which means indefinite booster shots for the rest of their lives. And if they don’t – say they forget for a year or two when they first move out (like in college, when they’re exposed to tons of different infectious diseases), they’ll likely get a horrible case of it. They also neglect to mention that, had we not developed this vaccine and given it so widely (as opposed to just kids who are immunocompromised or otherwise indicated to have it), we wouldn’t have the issue of kids not getting it naturally. 



2. There’s a shingles vaccine. Don’t worry. Great, so now, on top of the multiple chickenpox vaccines my kids will be getting for the rest of their lives, they have to get shingles vaccines? 


If you’re a pharmaceutical company, you’ve created a solution to a problem that didn’t really exist. But with the CDC on your side, you are guaranteed to have a captive audience for your vaccines for years to come. And in my state, physicians are given financial incentives (higher ranking with Medicaid and state insurance programs as well as payment) if they have a significant percentage of their patients who vaccinate fully. Thus the pressure I get every time I take my kids to the doctor for a check up.




It seems that, in the UK, they have decided to be more conservative with their recommendation and follow the research instead of the money. Interestingly, it turns out that in households with children who acquire chickenpox naturally, there is a smaller incidence of shingles. What that means is that there is likely a protective factor against shingles for adults living with children who have naturally acquired immunity to chickenpox. 
So, why the development of the chickenpox vaccine? Previous to the development of this vaccine, fewer than 100 people per year (out of 4,000,000 who contracted the disease) had complications that led to death. One hundred people sounds like a lot, but that is 0.0025% (or 0.000025) of the people with the disease. And the rest of those people had not only naturally acquired immunity, but some protection against shingles as adults. The normal lifetime risk of getting shingles is 10-30%, but the UK researchers noted that, with a chickenpox vaccine program, the incidence of shingles rises 30-50% until everyone is vaccinated, which could take decades. 


In my opinion, this particular vaccine has become a boon for pharmaceutical companies despite the fact that it protects very few people from the serious side effects of childhood chickenpox and instead, opens up an entire generation of young adults to risk for adult chickenpox infection and future shingles. If you add in the risk associated with multiple vaccines (some reported side effects of the Varicella vaccine include shock, seizures, encephalitis, thrombocytopenia and Guillian Barre syndrome), you’re looking at a lifetime of risking your health again and again versus the risks associated with acquiring chickenpox naturally and suffering it’s side effects.


Back when vaccines were first developed, they were designed to combat highly infectious, deadly diseases, and they were mostly developed by pure scientists who had little financial stake in the outcome. These days, pharmaceutical companies who are concerned with their stakeholders’ satisfaction commission their own scientists to create vaccines that may or may not be immediately necessary (the “fast tracking” of Gardasil is one egregious example of a corporate push to market that was altogether unnecessary) and gradually increase the population and number of boosters that are given, continually growing their market share. Until we can be assured that the entities who are recommending the vaccine schedule have no conflict of interest and have done truly independent studies on safety, efficacy, and necessity of each and every one of the vaccines on our current US schedule, it is unfortunately up to the consumer to advocate for themselves, their families, and follow the money. 






In case you missed, it, Part 1 of my writing on vaccines in the US can be found here.



I suppose that, like most other very controversial subjects, it shouldn’t surprise me that the vaccine debate tends to get framed as an all or nothing, black and white, choosing sides issue. Whenever we are driven by fear, human beings tend to lose the ability to think rationally and begin to believe that there is a Right and a Wrong answer, and the question of whether or not to vaccinate can certainly be a fearful one.
I do continue to be mystified, however, by people who should know better – public health officials and medical practitioners, for starters – that position vaccines as an all-or-nothing proposition, and here is why:
Vaccines are not all created equal. Accusing me of being “anti-vaccine” because I am concerned about the safety and/or efficacy of some vaccines or the current US vaccination schedule is akin to saying I am “anti-car” because I wouldn’t consider driving a Volkswagen but I might choose a Toyota.

  • There are a vast array of vaccines available, some of which were created decades ago and some that are fairly recent. 
  • Some vaccines on the market are multivalent (that is, they are designed to inoculate against more than one disease-causing organism) and others are monovalent (for one organism only).
  • Some vaccines were created to work against bacterial disease and others were designed for viruses.
  • Some vaccines contain adjuvants (chemicals that are supposed to increase the body’s immune response to create stronger immunity) such as aluminum and others do not.
  • Some vaccines are designed to be injected once in a person’s lifetime and others require multiple boosters in order to maintain a high level of immunity.
  • Some vaccines contain inert ingredients derived from animal parts, others from human fetal tissue, and things like MSG (monosodium glutamate).
  • Some vaccines have been tested many times over a long period of years on individuals of all ages, genders and races, and others have been “fast-tracked” which means that there was a determination that there was some public health risk that necessitated them getting to market faster, so there hasn’t been the same rigorous level of testing. 
I could go on, but hopefully it is imminently clear that the vaccines Americans are encouraged to give their children (and have themselves) are very different from one another. Much like buying a car, it is important to do research on each individual vaccine in order to determine a risk/benefit ratio and decide what is comfortable for you. For example, when my daughters’ doctor recommended the chickenpox vaccine for them, I researched it as thoroughly as I could and ultimately chose not to have them get those shots because I felt as though the risks outweighed the benefits. Similarly, they have not had the HPV vaccine and I don’t foresee either of them getting it anytime soon. (If you’re curious about why, you can read this post particular to the Gardasil vaccine. Since I wrote it, there has been a great deal more information published by other people who are critical of both Gardasil and Cervarix that shouldn’t be difficult to locate online.)

Please don’t think that I am under the impression that doing research on the safety  and efficacy of individual vaccines is a simple endeavor. I am fully aware that it is not, and I know how lucky I am to have both the time and the educational background to locate, digest, and mostly understand the data. Many, many people are unable to do what I have done, and the system is unfortunately not set up to support any kind of patient education regarding vaccines or any other pharmaceutical, for that matter. Many vaccines are available through drugstores and grocery stores in America, which makes it a challenge to have an in-depth conversation with the provider regarding risks and possible complications. Even if you go to a physician for vaccines, many of them aren’t as well-informed about the individual attributes of each vaccine as they could be, and a great deal of them are unwilling to have a candid conversation about the ingredients of individual vaccines. In a perfect world, the person who is recommending that you inject your child with something would have looked at the studies done on that drug to determine whether or not it is a good idea, but the amount of information is incredibly huge. The doctors I’ve met are content relying on the word of the CDC that vaccines are safe, but because these drugs are created and sold by massive
corporations who may or may not be interested in the greater good of public
health, but who are nevertheless incentivized to create a product that they can
bring to market quickly that will produce enormous profits for their
shareholders. In turn, these corporations use that money to lobby lawmakers who
wield a great deal of power over government agencies responsible for
determining whether these vaccines are safe and effective and when they get to
go to market, as well as recommending where in the vaccine schedule they ought
to be placed. There is a very clear conflict of interest for many physicians
and scientists working on vaccines who are being paid by large pharmaceutical
companies to create new vaccines. And, in many states, regular family physicians are paid by the state to give patients vaccines, so the more children they inoculate, the more they are rewarded. 


Ultimately, this issue is much more nuanced than many of us would like to believe, and because it is so complicated, we often fail to have productive conversations about it. In my heart of hearts, I believe that we are all striving for a country with healthy children, but if we are going to get there, it will, at some point, mean that we sit down together without fear or anger or labels and get everything out on the table with that singular goal in mind. 











 

For more than a year, I’ve been holding my tongue on the subject of vaccines for a whole range of reasons. The conversation seems to wax and wane, but now that it is front-and-center once again, I feel as though I am ready to put some of my thoughts and experiences out there.

I will do this in parts because the issues are incredibly complicated and I think they deserve a thorough examination, but because of an experience I had a year ago, I will start with the following letter.  I was invited, by MomsRising to be part of a gathering with Dr. Vivek Murthy, US Surgeon General, to talk about the MMR vaccine. It was positioned as a smallish group of folks that would dig in to the questions and issues surrounding the measles outbreaks that had recently occurred and I spent over a week doing research, asking other moms what they wanted to know, and crafting intelligent questions. When I got to the event, I learned that they had invited hundreds of other people to phone in and listen and instead of a conversation, it was to be a presentation by Dr. Murthy with a few select questions asked at the end (questions vetted by the presenters with no opportunity for follow up clarification or dialogue). Needless to say, I was disappointed and I later discovered that Dr. Murthy was on a tour of cities at the low end of vaccination rates and this was more PR than conversation.

When I asked Kristin, the head of MomsRising, about the format following the event and indicated that I had several unanswered questions, she seemed surprised and offered to forward all of my questions to Dr. Murthy so that I could get answers. I emailed her this letter with the subject line she suggested and have, to date, received no response.

The letter itself is lengthy, I admit, but despite that, I feel as though it barely scratches the surface of the complex issues surrounding vaccines. In Part 2, I will explain my overall thoughts on vaccines and I implore you to either ignore these posts or read them thoroughly and thoughtfully and respond with curiosity versus vitriol.

—————————————————————

Dear Kristin,
Thank you and the other folks at MomsRising for all you do
to rally, educate, and advocate for parents and children across the country.
The work you do is so important, based on what actual moms say they want and
need, and has thus far been amazingly effective. I appreciate your efforts to
get the Surgeon General in the room to address the concerns and questions of
parents regarding measles and the measles vaccine. I am keen to build on the
momentum and develop Tuesday’s event into a robust conversation that goes much
deeper.
I understand that the logistics of the event prevented it
from becoming an actual dialogue, but I think it’s important to recognize that
much of the substance of the issue has yet to be discussed. Because there was
no opportunity for folks to follow up on answers Dr. Murthy gave in real time,
or to clarify any of his answers by having an actual exchange with him or the
other two physicians on the call, I believe that there is much more work to
do.  Indeed, as demonstrated by the
poll taken during the conversation, 56% of the listeners report being either
“somewhat” or “very” concerned about the safety of the MMR vaccine. To me, that
speaks volumes.  I am writing to you
in the hopes that you will forward these questions on to Dr. Murthy or find a
way to engage him in another, more conversational meeting where these issues
are discussed. 
I am writing to you as a mom of two neurotypical kids who
have had most of their vaccines to date. I am also writing to you as a woman
with a bachelor’s degree in biology with a minor in chemistry who worked for
years in direct patient care as a medical/surgical assistant and then moved on
to work in Quality Assurance for the Washington State Mental Health Division.
While I agree that this letter is long, it is the result of several
conversations with other mothers who have concerns beyond what was discussed
the other day. I hope that you will take the time to read it and reach out to me
with any questions you have.
The vast majority of our questions have to do with the
safety of the MMR vaccine and, from your quick poll, I see that we are not
alone among the people who attended this event on Tuesday. Our main issues
around efficacy of the MMR are two:
  1.     Using global statistics to demonstrate the
    effectiveness of the MMR is an unfair comparison. To say that “there have been
    over 15 million lives saved by the MMR vaccine since 2000 alone,” as Dr. Murthy
    did in his closing statement ignores the reality that many of those lives would
    have been lost because the children are living in third world countries without
    proper nutrition or sanitation. It is incendiary and doesn’t adequately portray
    the situation here in the United States to use global numbers to talk about
    domestic issues.
  2.       I can locate no long-term studies that have been
    done to determine whether people of my generation (born in the late 1960s and
    early 1970s) who received their full recommended MMR vaccinations actually
    still have blood titer levels that show that they are immune to measles. In
    response to one person’s question, “Does immunity wane as people get older?”
    Dr. Murthy answered, “There doesn’t seem to be any evidence that suggests
    that.” I’m concerned that this conclusion has been reached without any actual
    scientific studies and it may, in fact, “seem” that immunity doesn’t wane
    because of the drastic drop in the incidence of measles in the US. It would
    seem to be a fairly simple examination to undertake a study of adults across
    gender, ethnic, and socioeconomic populations and determine whether or not they
    are still immune to measles thanks to the MMR vaccine. The term “herd immunity”
    or “collective immunity” gets used an awful lot with regard to vaccines, but I
    don’t know that it has ever been tested with regard to vaccinations. There is
    evidence that this phenomenon holds true in animal populations and with
    naturally-acquired disease, but I would like to see a study that shows that it
    is valid for vaccine-acquired immunity. We can’t base public policy on a
    theory.

The following are questions regarding the safety of the MMR vaccine.
  1.            On Tuesday, Dr. Murthy assured MomsRising
    supporters for the second time that they ought not to be concerned about the
    MMR vaccine shedding live virus. “Don’t worry about exposing others,” he said.
    “Carry on about your lives.” However, parents of children who are immunocompromised,
    either naturally or due to medications like chemotherapy drugs, are often told
    by their physicians NOT to get their other children vaccinated with any live
    virus, including the MMR. In addition, the vaccine insert produced by the
    manufacturer, Merck, is written as follows: “Excretion of small amounts of the
    live rubella virus from the nose or throat has occurred in
    the majority of susceptible individuals 7 to 28 days after vaccination.” (emphasis mine). Additionally,
    this article
    http://www.cnbc.com/2015/03/03/globe-newswire-public-health-officials-know-recently-vaccinated-individuals-spread-disease.html
    in a mainstream media outlet talks about the fact that experts know that
    recently vaccinated individuals can spread disease. And yet, parents who choose
    to delay or forego certain vaccines for their children are routinely vilified
    and blamed for disease outbreaks. I believe that this is one very compelling
    reason why so many parents are confused about these issues. Whom do we believe?
  2.       When vaccines are tested for safety, they are
    tested in isolation; that is, one at a time. But more often than not, they are
    administered to children in tandem with other vaccines. Why are there vaccines
    on the US schedule that are given in the same day but not tested together to
    assess their effects? Much like baking soda and vinegar are inert alone but
    explosive in combination, it is scientifically possible that when two different
    vaccines are put together, they will act differently in the body of a child
    than they did when tested alone. We can say that we think they are probably
    safe together, but without rigorous testing, it is irresponsible to give them
    to children with developing immune systems without being much more certain.
  3.       Also, when vaccines are tested for safety, they
    are not tested against truly inert placebos such as saline solution. Often they
    are tested against another cocktail of preservatives and adjuvants that are
    only lacking the vaccine itself. We are not just concerned about the vaccine
    components, we need to know what effect substances like aluminum adjuvants and
    MSG and pig gelatin have on the human body when they are injected. We also need
    to know what effects they have when they are injected in large amounts, as in
    the case of multiple vaccines given on one day. I wouldn’t eat a “safe” dinner
    off of a toxic plate, and I don’t want to inject my children with a “safe”
    attenuated virus that is held within a toxic set of preservatives. We deserve
    to know that
    each and every component
    of the vaccines we are being given is safe.
  4.       All three of the doctors spoke of the Institute
    of Medicine as an independent body that reviews all of the safety and efficacy
    studies on vaccines (among other things). I am curious to know whether the IOM
    crafts and undertakes their own studies or simply reviews the studies done by
    other organizations that may have a vested interest in the outcome. The design
    of a scientific study is as much responsible for the data set that emerges from
    it as anything else, and if truly independent studies are not being designed,
    we cannot hope to get accurate information.
  5.       Dr. Murthy encouraged parents to talk to their
    healthcare providers if they have questions about whether or not their children
    should have a particular vaccine. I agree entirely, but I have to say that we
    don’t live in a perfect world where all families have healthcare providers that
    have the time to have detailed conversations during a well-baby check, have the
    intimate knowledge of what a vaccine package insert says, or even get their
    vaccines in a doctor’s office.
     
    Families can go into Walmart and get vaccines for flu, chickenpox, HPV,
    pneumococcal pneumonia, hepatitis, meningitis and MMR, in addition to others. I
    am concerned that many of those folks do that because it’s cheaper and easier
    than making a doctor appointment, and I wonder how robust the patient education
    is or whether there are opportunities to ask complex questions, or if most
    parents even know what or how to ask. His answer is predicated on the
    assumption that most parents have a trusting relationship with their child’s
    doctor and I fear that that is inaccurate. I think it is also possible to
    discount the intimidation factor most people have when faced by a person in a
    white coat.
     
  6.            Dr. Cohn and Dr. Murthy both talked about the
    requirements for providers and vaccine manufacturers to report adverse events
    to the VAERS. Further, Dr. Cohn explained that patients and families can also
    report to this body any adverse effects they experience due to a vaccine. This
    prompted many questions. First, how many parents are told that this is an
    option and offered information on how to go about reporting to VAERS? Second,
    is there an estimate of how many parents don’t report side effects because they
    either can’t tell whether they are related or because it will cause them to
    have to make another doctor appointment for their child, which is both costly
    and time-consuming? Third, in the case of a family who receives their
    vaccinations from a place like Walmart, how likely are they to report any
    issues and to whom? If they don’t know about VAERS and they weren’t going to a
    doctor for their shots in the first place, they aren’t likely to seek one out
    to report negative side effects unless they are severe. Lastly, Dr. Cohn said
    that the CDC, and the Department of Health and Human Services follows up on
    every report made to VAERS and I am curious to know what the threshold is for
    deciding that action is required in the form of further study. How many of the
    same or similar reports have to be made in order for them to determine that
    this is an issue and how much time elapses between the reporting of an adverse
    event and the review?
      Finally, I am curious about something Dr. Murthy
    said in regard to autism and MMR. He said that, “because autism symptoms show
    up around the same time that kids are getting the MMR, there are some people
    who think the two are related, but they are not. This is why we need to really
    look at the populations, we need large numbers to do rigorous independent
    study. We need to look at broad data sets to see and what the data says is that
    there is no connection.” I am interested in whether there has ever been a study
    done on the relative health of vaccinated children versus unvaccinated
    children. We know that there are entire pockets of unvaccinated children in the
    United States and it would seem relatively simple to compare them to children
    who have been vaccinated on schedule. This seems like a straightforward study
    that would provide some interesting information about a range of potential
    issues that we haven’t considered might be correlated with vaccines.

Thank you for indulging our questions. I find it fascinating
that the amount of media attention given to this most recent measles outbreak
has spurred legislation in several states and, yet, 65% of the people you
polled on Tuesday indicated they are not concerned about the outbreak. That
said, I think this offers us a great opportunity to engage in some intelligent
exchanges about measles and the MMR. I appreciate your effort to get answers
for your supporters.  If you decide
not to forward this on to Dr. Murthy, please let me know and I will try to find
another way to have the concerns addressed. 
Sincerely,

Kari O’Driscoll

This is a response to Elizabeth’s comment on the previous post about sex as a commodity, and I will preface it by saying I wish I had a definitive answer. She asked how I would educate my sons about sex and rape culture if I had sons, and I think it is a particularly salient question. I thought about it in the context of my brothers and my dad, but my teenage years were a different time. Not that there wasn’t a hearty dose of misogyny and male entitlement, but it wasn’t talked about at all, and rarely was it ever challenged.

After puzzling on it for a bit, I went to a source I trust: Lola. As a 13-year old girl who is proficient in social media, steeped in girls’ empowerment, and has a strong, vocal opinion on social justice, I was interested in her ideas about how to talk to teenage boys about rape culture.  She started out by encouraging parents to watch this YouTube video about consent with their kids. All of them, boys and girls, starting at a pretty young age. It’s a pretty powerful analogy and points out just how absurd our ideas about sexual consent are.

I love this video because it doesn’t avoid the idea that a person’s consent status can change at any point. Yes, it is possible for someone to say “yes” and then change their mind, two or five or twenty-five minutes later. And no matter when it happens, it’s valid. I’ve talked to my kids about the concept of the Least Common Denominator (don’t let your eyes glaze over – this has nothing to do with math). That means that the person who is the least comfortable gets to make the rules. The lowest threshold for sexual intimacy is the trump card. So if I really want to have full sexual intercourse but my partner just really wants to make out on the couch, we stop there. Period.

The second point Lola said was important to share with teenage boys is that, even though they may not have personally done anything to make a girl feel uncomfortable, rape culture means that in many situations, we just are.  Even I, in my mid-40s and fairly fit, am always nervous when I get into an elevator with just one other person who is male. Always. That is rape culture. Rape culture is me not feeling comfortable getting into an Uber or a Lyft by myself with a male driver. Chances are, he is a nice guy who will pick me up and take me to the destination I requested without any detours, but rape culture means that I am acutely aware at all times that I lack power – and therefore physical autonomy – until I get out of the car.  And rape culture also means that I often suffer through comments on my physical appearance and speculation about what I might be going out to do (often with lewd body language) and don’t speak up because it might anger the driver and then I’m screwed. Lola said she would want boys to know that these kind of experiences happen daily to girls and women, even if they themselves aren’t perpetuating it. She wondered if they might be willing to imagine what it would be like to be constantly on guard, wondering if the next guy who spoke to you would try to do more than speak.

We ended up having a conversation about street harassment and she cracked me up when she said, “They should know that girls and women don’t get dressed in the morning so that they can go out and get comments on their appearance from total strangers. Ever. That’s not a thing.” Even if guys think it’s totally innocent or a compliment to tell someone how they look, it ultimately makes women and girls feel unsafe simply walking down the street.  This video is a powerful one because it is a small sampling of what many women experience on a daily basis as they go about their business. And the irony is, no matter how she was dressed, if she had been accompanied by a man her age or older, none of that would have happened.  Nobody would have commented on her appearance – some out of fear of the other man, and some out of respect for him. But none of them out of respect for her. And that is rape culture.

The fact is, as I wrote in my last post, in our culture sex is often about power, and those who are born with more power are the ones who often make the rules about sex. Frankly, the most impactful thing I’ve been able to do when I’m having a conversation about sex with my girls is to listen. I like to think that I’m fairly plugged in to pop culture, but I know that there is a lot that goes on that I don’t see. And I’ve discovered that if I listen without judgment, my kids actually first love to shock me with the tales of goings-on in their world, and then feel like they can dig a little deeper and think about how all of it makes them feel.  I have also discovered that talking about sex and sexuality in lots of different ways – commenting when we’re watching a TV show together or when I hear a story on NPR with them in the car, showing them a video like the ones in this post and watching for their reactions, or slipping this letter under someone’s bedroom door – gives us opportunities to continually explore and challenge the ideas we have about sex.

Elizabeth is right. Talking to our kids about sex is incredibly hard. Sometimes they get annoyed and don’t want to talk (or listen). Sometimes I’m not the best at explaining something or helping them understand where I’m coming from. Sometimes I’m not good at listening without judgment. But the most important thing I ever did for my girls was to let them know that I’m willing to keep trying. That they can come talk to me about hard things whenever they want to and that I will bring tough subjects up from time to time and ask them to indulge me. Because if we as parents don’t work to counter the basic themes about sex that our kids get from school and the mass media, nobody will.

Jon Krakauer’s Missoula: Rape and the Justice System in a College Town
The New England Prep School rape case
Peggy Orenstein’s latest book, Girls & Sex
Sex trafficking rates skyrocketing
The advertising phrase (and perhaps its most bedrock belief) “sex sells”

I could go on, but I think you’ll get the point. I’ve written here many times about rape culture and Sex Ed and I have very, very strong opinions, both as a sex assault survivor and as the mother of two daughters. But more than that, I am concerned for the way our entire culture treats the topic of sex because I think that from a very young age we are taught that sex is, first and foremost, a commodity, and secondly (sadly, a distant second for many, many people), an act of affection and/or love between individuals.

Long before most parents even consider broaching the subject of sex and sexuality with their children, they are bombarded by slick magazine ads, television shows, movies, and books that depict sex as a commodity, as something that we all ought to want and that we can buy our way into. There are many young people who are taught by older children or adults that their sexuality is something that can “buy” affection or special favors. Parents who prostitute their children are not only profiting financially, but they are teaching their children that sex has power and if you want money – or if you have it – you need only sell yourself. Many teenagers, both girls and boys, have a deep understanding of sexual favors – there are those who purchase social capital by giving blow jobs or hand jobs to others and those already in power who cement their status by receiving those favors.

Even if these kids do get “Sex Ed” in school, it is largely mechanical in scope, outlining anatomical features and talking about how pregnancy happens and how to avoid STDs. By the time they are adults, very few of them have an understanding of sex as something that is theirs to define – that they have every right to engage in it with an expectation of pleasure as opposed to some “reward.” Our American notion of “sex” is a very transactional one that is often one-sided. By the time we have the courage to really talk to our kids about sex (if we ever do), there is so much damage to undo that it feels overwhelming. And for children who learn early on, through abuse or sex trafficking, that sex is a tool, it is possible that their fundamental understanding of this act that is supposed to make their lives more whole has been forever damaged. How do you undo the notion that the person with more (power, control, money, status) has the right to obtain sex from the one with less when that is what you are shown in so many different ways over and over, nearly from the time you were born?

When girls are raised with the idea that their power lies in their ability to grant or withhold sex (the most egregious example of this I’ve heard of recently was Spike Lee’s latest movie Chi-Raq), it is damaging to their ability to see sex as something that is more intrinsically rewarding. When they are surrounded by images of women who are sexually provocative and who are praised for it (Kim Kardashian’s nude Instagram photos, anyone?), they are taught that sex is a tool, and that it ought to only look one way or it isn’t right.

When boys are raised with the notion that the more sex they have, the more masculine they are, it is equally damaging. Because, in our culture, they are born with more power at the outset, when they are presented with the idea that sex is a commodity, it isn’t much of a mental leap to imagine taking sex when they want it, simply because they can. When we set sex up to be about power, we can expect rape to follow along shortly. When business lunches are conducted in strip clubs and sex trafficking rates rise sharply during the Super Bowl, you can be sure that we have embraced sex as a commodity.

The question is, are we willing to live with the consequences of that or can we start talking to our young people about what else sex might be, instead?