Treading New Ground

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I had thought that, since I lost one parent already, there would be a sense of familiarity, of deja vu, of “been there, done that” when I lost the next one. Not in a dismissive way, just an “ok, I’ve got this, I know what to expect” kind of way.

Nope.

Dad was diagnosed with lung cancer. He told me early on, I was there to listen, I went down when he had surgery to remove part of his left lung and some lymph nodes, I let him bounce ideas off of me for future treatments. We weren’t certain of the timeline, but we knew he was sick and he was absolutely honest with me about how sick he was. It was excoriatingly, skin-flayingly, teeth-grindingly painful in the last week to watch him suffer. He knew me until the minute he died in my arms.

But Alzheimer’s or dementia or whatever the hell this is that Mom has is a completely different animal. She isn’t having some diseased cells cut away. She isn’t calling me to tell me about the latest drugs or therapies her doctor has offered. She might live for six months or six years. She has no idea who I am.

This one-sided relationship is teeth-grindingly painful in a completely different way. When Dad took a turn for the worse, it was obvious. Over a period of several days, he began having pain in his legs and hips and when they took x-rays it was clear that the cancer had spread to his bones. An MRI showed it was in his brain, too – the cancer cells lit up like the night sky I once saw in the middle of nowhere, New Mexico. From that point forward, we knew there was no rallying, no bouncing back.

Mom’s slide has been gradual except when it seems to leap forward, and there have been many times over the last year when she was almost able to snap out of it and recognize me and have a conversation. The cruelest part of that is that it gave me hope. It made me wonder how we could capture those lucid moments and prolong them, whether there was some magical drug that she could take that would clear the way for a return to herself. Those moments, when they are gone, are all I can hope for and envision, but they are much fewer and farther between and I know I won’t get a signal that tells me I’ve seen the last one. I didn’t get a sign the last time I spoke to Mom on the phone that said it wouldn’t happen again. I didn’t get a warning the last time she called me by name and knew I was her daughter so that I could savor it.

There is a part of me that wonders if I am a little bit narcissistic in my grief. A part that thinks maybe it shouldn’t matter so much whether she knows who I am, that tells me to just get on with caring for her the best way I know how without worrying whether she remembers I’m hers. Because somehow, I want to be special. I don’t want to be just one of another cast of characters who comes through to visit and smile at her. I want to be her daughter, not for any sort of recognition of my efforts, but because I mean something more. There is something about the reciprocity of a loving relationship that makes it feel whole. When I sat with Dad during his last days, holding his hand and telling him stories, even though he couldn’t speak, there was a familiarity. He squeezed my hand and his eyes danced during the funny parts, and his rough, calloused thumb rubbed back and forth against mine when I was being serious. We had a history that was fully intact until the moment he took his last breath and when I grieved for him, I grieved for all of it simultaneously, the loss of his body, his Self, and our relationship.

This time, I am grieving in stages. While there are parts of Mom’s Self that are still fully intact – her sarcasm and playfulness comes out sometimes with her husband – I have lost the history of our relationship as mother and daughter. She knows I am familiar, but she doesn’t know why. Our inside jokes now belong to me, even though she is physically still here. When we sit together, I can’t tell her stories about my kids or my husband because it confuses her – she doesn’t know these people, why am I talking about them? We can’t reminisce or look forward to sharing family holidays together or significant moments in the future because she isn’t coming to my girls’ high school graduations or weddings. There is a quality of suspended animation to it all, a sense that I am walking without a foundation beneath me.

I wish I had a succinct ending to this post. I usually am able to close the loop with some sort of insight, but maybe the fact that I can’t this time is an apt metaphor for how all of this feels right now – loose and unfinished.

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Memoir Excerpt on The Manifest-Station

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Yesterday, Jennifer Pastiloff’s site, The Manifest-Station, featured an excerpt of my memoir-in-progress on their site. I am thrilled to have this process begin. You can find it here. 

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Choosing Grief

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It has been a challenging few weeks around here and I feel like I’m learning a lot about grief and emotional overwhelm. The first thing I’ve noticed is that they both feel very different to me as an adult than they did when I was a kid, but maybe that’s because I have a much stronger bedrock beneath my feet these days. Maybe knowing that the bills will get paid and there is someone to share the load of parenting and managing everyday things leaves me more space to just feel what I’m feeling. Or maybe being an adult means that I don’t have anyone telling me that my strong emotions make them uncomfortable or that I’m over-reacting, or if they do say that, I don’t give a shit.

My brother-in-law died quite suddenly at the beginning of July and even though I hadn’t seen him in several months, I was acutely aware of the loss. Like me, he married into Bubba’s family – a close-knit, fairly traditional clan – as someone who came from a very different background and family dynamic. We bonded over our “black-sheep-ness” and became allies early on. He was someone who always, always had my back, someone who was as sensitive and stubborn as I am, someone who always went to bat for the underdog. He was fiercely protective of me and my kids and Bubba’s sister and we had great fun together – often in the kitchen during family gatherings. Even in my grief, I marvel at the fact that our paths ever crossed, given the difference in our ages and the fact that he was Croatian, and I am grateful for the two decades I got to share with him on the planet.

A week or so later, I lost my beloved CB, my “mostly companion,” my shadow, my furry boyfriend. For more than a decade, he followed me through the house, prompted me to go for walks to clear my head, slept next to my side of the bed, scared strangers at the door, and cracked me up with his ridiculous dog antics. He was loyal and loving and when it came time to let him go, he sat with his head in my lap and trusted me implicitly. I still hear phantom toenail clicking along the hardwood floors and expect to see his smiling face at the door when I come home from the grocery store. Taking walks in the neighborhood without him is strange and disconcerting and I can’t bring myself to move his bed from its spot in the family room quite yet. I feel his presence in every room of my house and my grief is tempered by the absolute joy he brought to my life each and every day, by the years he was there to wake me up with positive energy.

Two days ago, my grandfather had a stroke and reminded everyone when he got to the hospital that he doesn’t want any lifesaving measures. He has lived a good, long life, outlived one of his children (my dad), two wives, and has struggled for a while to really feel as though he was thriving. He is my last remaining grandparent and my childhood memories of him are strong and clear. He is a gentle, funny man who was always ready to teach us something, whether it was a magic trick or how to use a belt sander. In my father’s last months, he was such a comfort and source of love for my dad and watching the two of them interact was incredibly healing for me.

Yesterday, a dear friend of mine lost her husband in a freak car accident. He leaves behind two teenage children and my lovely friend who has been a rock for me more than once. I am overwhelmed. And I am thankful that I have learned a thing or two about grieving – at least my process for grieving.

I have learned that while it is often incredibly helpful to have friends and family around, ultimately I have to grieve in my own time in my own way. I have learned that grief – like life – is not a linear process, but one that requires me to circle back around to what feels like the same spot over and over again, but that each time I come back around, I have a slightly different perspective, an ever-so-advanced understanding of what I’m feeling and how it fits into the larger picture.

When CB died, I was home alone for a few days. Someone advised me to “go do something – don’t stay in the quiet house – distraction is good,” and while I know they meant well, I know from experience that distraction only leads to protracted grief. I came up with a sort of formula that consisted of deep, unapologetic dives into sadness followed by a period of mindless activity like laundry or cleaning out the fridge followed by social interaction. By allowing myself to really feel what I was feeling without descending into it so far that I couldn’t get out, I was able to feel the edges of my sadness and honor them without letting them define me. I follow this pattern over and over again without placing any sort of expectation on how long it will take me to “finish,” and the simple act of accepting my own feelings, whatever they might be, is an exercise in trusting myself.

I have also learned that it is important to surround myself with people who understand that grief is not a quick and dirty, check off the boxes kind of process. I need to surround myself with people who don’t find my strong emotions uncomfortable or unpleasant because that means I either have to stifle my true feelings or I end up emotionally taking care of them. I actively seek those who are willing to sit with me during those deep dives without trying to fix or abbreviate or deny my feelings. These are often people who have really grieved themselves, and they ‘get it.’

While there is a tendency to throw my hands up in the air and ask Why? as the tragedies pile on, I have learned that that is simply a distraction tactic that doesn’t serve me in the end. It doesn’t matter why. I am in the midst of sadness and overwhelm and the only way out is through. There was a time in my life when I would have wished for a magic wand or a time machine to transport me through these days quickly and efficiently, but these days I am content to take the feelings as they come and do my best to find the revelations that often accompany them. It can be painful and often overwhelming, but it is all part of this glorious, messy, beautiful, painful, honest life I choose to live.

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The Elephant in the Room

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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.

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Bittersweet Moments

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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.

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When “Owning It” Is Harder Than it Sounds

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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.

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Stream of Consciousness Morning

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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?

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Does Anyone Else Drive Like This?

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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.

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Diving In, Part 3: New Vaccines and Random Questions

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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. 






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Diving In, Part Two (Or, Why the Vaccine Debate Isn’t Cut and Dried)

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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. 











 

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