Saturday, February 14, 2015

Take a Deep Breath and Change the Conversation Along with National Geographic

photo by Emily Berl for National Geographic

While I wouldn't say this article does justice to my deep feelings of betrayal by and mistrust for the American public health and medical system, I am grateful to Karen Lowe and Emily Berl for their sensitivity in reporting this story about our family's experiences. It was a tumultuous week for me leading up to and even after being interviewed. Reviewing such a traumatic time and even re-discovering the facts -- that Sophie was vaccinated, suffered a reaction and was then re-vaccinated two times even as her immune system was decimated by high-dosage steroids -- disturbed me on perhaps a deeper level as it came all at once, not tempered by the years and years of crisis and caregiving. As the days go by and the hysterical media as well as more-hysterical citizen scientists, and friends have moved on to what's new and exciting, I feel calmer and less wounded even as I contemplate the draconian calls to coerce the population into vaccinating their children.  When I agreed to this interview, my intent was to help to change the tone of the discussion, and while I don't believe the article really addresses my very grave doubts and mistrust in the vaccination program overall, I think it does justice to the need for a more compassionate discussion, and I appreciate that National Geographic has made an attempt to do so.

Here's the article.

And mark my words, there's more to come here.


  1. At the end of my most recent hospital stint, a nurse came in stating she was to administer a flu shot, as i hadn't received one yet this season. I was *beyond* exhausted from a week of endless seizures and hospital antics (daily 03:30 lab draws is standard procedure at this facility, for instance). I'm no M.D. but it seems anyone with a basic understanding of vaccination might realize this was a sub-optimal time to, you know, inoculate someone with a virus?! Gah.

  2. I agree the article did not do you or the issue justice, but the most important point--that the hysterical tone of this discussion isn't fruitful and needs to change--came across. And your sentence about how strong Sophie is broke me. You and Sophie are both truly incredible women.

  3. I deeply respect your ability to respond to the comments in the article with such an even tone, regardless of the fact that some are so patronizing and/or inflammatory. As I said before, I am thankful that you have the courage to do this.

  4. The photos in the article are wonderful. Your family is so beautiful. The article itself barely scratches the surface but it does try to be even handed. The comments section is where the real pyrotechnics are. I cannot believe the smug condescension of people whose lives have not been touched by vaccine injury. What luxury. They dodged a fucking bullet. Why don't they appreciate that and thank their lucky stars? Why can't they see there but for grace go any of us? How can they be so blind about big pharma? The ignorance and arrogance run so deep. I can't imagine what you deal with and I wish you didn't have to. Insult piled on top on injury. I can't even.

  5. Ugh, those comments. I can't read them. The article, however, turned out beautifully. I think it captured the issue well (if a bit simplistically) and the photos are terrific. I think the article, by itself, DOES raise the tone of debate. I wonder if it's really productive for you to read and try to respond to the comments. I'm afraid it will just degenerate into an unhelpful level of rancor and make you feel angry and upset. (As I said, I didn't read them all!)

  6. I love that you did this, and that the article was mostly representative. I don't believe, though, that it will change the conversation much, given the fact that most of the people involved aren't really interested in conversation - they just want to win.

    I can only hope that the bills in the Oregon, Washington, and California state legislatures will die a hasty death because to have this choice taken away from so many families feels really frightening to me.

  7. Elizabeth, dear, dear Elizabeth. Your words in this article were so concise, intelligent and truthful.

    How I wish people could see the value of experience and just listen to the plight of a family obviously living with the result of a frightening lack of exposure and responsibility on the part of those making, administering and refusing to admit the "rare" but obvious results of such unresearched and potentially dangerous things as vaccines.

    I was appalled at the majority of the comments and realize, although I don't go there - facebook - that this is a lot of what you have to put up with. I am sorry that you had to respond to any of this closed minded commenters, but my god - the power of Maggie Mays responses to the lack of understanding here was wonderful. I hope you take some consolation in that and the empathic reaction of those who understand and support you.

    And the photos - beautiful.

  8. I wrote a very thoughtful and wise comment yesterday and then recaptcha wouldn't let me verify!

    Today I'm not as wise, obviously yesterday was a one off.

    I don't understand why everyone is getting their panties in a twist. Those that don't want to immunize don't have to and their children may or may not get the disease. Those who chose to immunize can.

    My son had a bad reaction to the pertussis vaccine and is not immunized against it. My other two are. I made my choice and expect others to make their own choices.

    More blunt today apparently:)

    Take care woman. Katie is slowly recovering, still no feeling great but the infection is under control.

  9. The photos in the article were beautiful. The article showed a bit of what it's like for you and the big ignoramus commenter as of early last night is like a cloud that should just float on by and away. Sweet Jo

  10. I think the article is needed and thank you for speaking out. Vaccines are not the only area in which our healthcare system continues to discount and fail patients and their families. As an adult who lives with a disability and who is her own advocate, I know this from personal experience. My recent events at the medical school clinic in which my primary care physician sees patients when she is not teaching would piss you off royally, but only because you engage your brain and are wary due to Sophie's experiences. I now trust no-one completely and have a hard time finding decent and knowledgeable care. I hope the article helps others to understand the myriad issues involved in dealing with drugs, vaccines and our medical system, and what that is like for your family and many others. Thanks.

  11. Last week I was told to go ahead and give myself another injection of a medication that I was 95 percent sure had caused my throat to blister and swell up within 15 minutes of the injection. The doctor said that med didn't cause the swollen throat, I couldn't be allergic to that medication, I had been on it too long.. The doctor said they could no longer treat me for the condition that I was taking that med for. I needed to go to a specialist. I agreed. I still haven't taken another injection of that med. The swelling of my throat is now gone. It seems lately that many doctors seriously discount, or even completely refuse to listen to patient reports from patients having problems with meds.

  12. Thank you for that excellent article in National Geographic. Your nuanced vaccine position was conveyed so well and the photos were gems, especially the one of Sophie on the couch. The Robert Kennedy Jr. article you linked to really blew me away. I'm still trying to digest its scandalous revelations. And eagerly await that upcoming Congressional hearing.

  13. Those comments are wild (on NatGeo)! Thank you for sharing your family's experiences. What happens next with American vaccines is going to be fascinating. Is accountability so much to ask for?? Medication testing has, of course, the same problems--studies that show positive results are shuffled to the forefront, and the ones that don't are quietly discarded. I believe in science and pharmaceuticals, but am not comfortable with the current state of things. I'm going to ask a clarifying question. In the post about Sophie's diagnosis, you talk about vaccinations in relation to the underlying structural differences in her brain. It seems like your beliefs about this interaction might be different nowadays. Now, I know this is very personal stuff and I will completely understand (not that i have to, this being your blog and life and all!) if you don't clarify, but I was wondering if you now believe the fault lies entirely with the vaccinations, or if you still believe it was more along the lines of a trigger, which may have resulted in seizures beginning earlier than they would have otherwise? (and of course, the earlier seizures begin, the more destructive they tend to be)

    1. Hi, Liz. Thanks for your comment. In answer to your question, I honestly don't know what to believe regarding Sophie's seizures and her underlying brain abnormality. When we received a diagnosis of dysplasia a few years ago, it was inconclusive, and the doctor told me that whether it was in utero or post utero was unclear. The hospital also lost the records of her earlier MRI, so it was difficult to reach any conclusion. In any case, I do believe quite strongly that Sophie's seizures were triggered by the DTP vaccine and then worsened dramatically when she was vaccinated two more times with eight more vaccines, despite being on high-dosage steroids and thus immune-compromised. And yes, you are correct about seizures and the timing. Whether they were trigger or causative doesn't really matter to me -- or her, at this point. It's still fucked up.

  14. Ah, I see. Thanks for your reply, Elizabeth.



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