Tuesday, February 10, 2015
There are days like today when the waiting seems more than ridiculous. The waiting seems not only interminable but insane. We waited for The Neurologist and then we waited for Blood-work. We'll wait for results.
We've been waiting -- for what? -- for twenty years.
The desire to flee, to shove the baby under my arm, the toddler into a backpack, the child onto my back, the young woman into her chair and to just run the hell away is so strong that to fight it would be death.
I did an interview with a journalist this past weekend who is writing a story for National Geographic about the vaccination "debate." They wanted to cover the story of a family who believed in vaccinations and whose child had a negative reaction to a vaccine and therefore decided to delay their other children's vaccinations. I consented to the interview because I want to change the tone of the "debate." In response to a few questions, I pulled out some old documents in Sophie's medical file and found a small journal that I had kept beginning in January of 1995. I don't think I've looked at it in eighteen years. Sophie was born on March 8, 1995. On May 3, I wrote this:
I had a couple more entries and then this:
The rest of the journal consisted of precise notations of seizures and medications and every tiny little bit of behavior that we noted and noted and noted as we waited for things to get better.
I pulled out Sophie's vaccination record for the journalist as well -- that hideous yellow card buried in a file at the back of the file cabinet. I was stunned by the progression of events. I've never written about that, but I will. Wait on that.
Ironically, the past few weeks have turned my inchoate fear into a strengthened resolve. The journalist asked me whether the CDC or Powers That Be could do or say anything to sway me to agree to vaccinate my children by their dictates. I said, No. I said that they could continue to work on vaccine safety. They could do studies on the long-term health of the unvaccinated (it's been my direct experience that my two boys' health has been extraordinary compared to the general health of my friends' children and I'm curious to know whether this is an accident or something to think about in an immunological sense). I said they could acknowledge the risks of vaccines, and the many children and adults who have suffered from them, like Sophie. They could wait before whipping the country into a ridiculous fervor. They could disengage themselves from The Business of Medicine. They could acknowledge their mistakes. They could make amends. As for the herd? I said, Bless their hearts.
Posted by Elizabeth at 4:57 PM
Labels: CDC, journal, memories, musings, National Geographic, Sophie, story, vaccinations, writing
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It makes me happy to know that you were sought out for this interview and that you chose to participate. I am thankful for that.ReplyDelete
Elizabeth I've wondered the same thing from an immune system pov- Ian and Dakota, vaccinated on the regular schedule, both having chronic, recurring health issues over childhood. Lola and Ever, partially vaccinated over a very stretched out period of time- Ever has only had a few so far- and healthy as horses. Ever, so healthy despite the serious RSV she contracted as an infant and developed breathing issues after, which her doctor said would develop into asthma most likely. It did not, and she retains no issues. Both girls radiate good health in every way. The boys had smaller signs- eye circles, fatigue come and go, stomach pains- that indicate something off. It does make you wonder.ReplyDelete
That entry you wrote on May 3 is forever seared in my mind. Such innocence you had that day, with only a faint prescience of what was to come. Oh Elizabeth. Your life, your family's life, is powerful testimony but I can't help wishing you did not have to carry this one. But you do carry it. And I am grateful for the intelligence, courage and fierce conviction with which you tell your truth. We need to hear it in the worst way. Thank you.ReplyDelete
I am colouring my hiar and don't have my glasses on so I hope this is legible.ReplyDelete
Keep on telling your story. YOU changed my very strong beliefs about vaccinations. Keep telling your story. There will always be the haters but there is also people that will be open to learn.
I can't see what I just wrote so I hope it makes sense.
This is powerful and I too am glad they chose you and you agreed to tell your truth. Sweet JoReplyDelete
I'm glad you agreed to do the interview. It's important to change the tone of the debate -- indeed to HAVE a debate, and not just an exchange of insults, which is what this discussion seems to often become. I know your perspective will help a lot of people (and hopefully researchers) think more about this issue. You've definitely made ME think about it.ReplyDelete
This post should be compulsory reading for any pediatrician who pushes vaccines onto families.ReplyDelete
My child was born 8 weeks prematurely and got meningitis at 6 months. Luckily, our doctor had just read somewhere that the measles vaccine could have a detrimental effect with these two risk factors in her life. So no vaccine for us.
A short while later the most popular TV show in Ireland (where we lived) did a thing on measles and vaccines and how every child must have it. To make their point they wheeled in a poor unfortunate child on a stretcher who was in this most dreadful condition because he never had the vaccine but had measles etc.
I felt as if I had been struck by a fierce weapon and could not sleep for several nights. In the end I lodged a complaint with the media control board or whatever it is called. I got a wishy washy reply and free tickets to the next show. I am still shaking with fury when I think about it.
It's a complicated issue I realise it. I had measles at age 17 and it was hell. I never got it earlier when my siblings had it and I was considered to be immune to it. This was in the 1960-70s.
My child never got the vaccine in the end and had measles at age 9. It was tough but she recovered.
I have no advice. But it helps - massively - to have an open mind.
My heart goes out to you and your Sophie.
Never stop telling your story. I'm so glad you did the interview. There are so many nuances to this issue and we don't get them in the news. If only there were a vaccination to prevent closed minds.ReplyDelete
I love you and your writing.
Holy shit. Your journal entry just grabbed me. Holy shit. I am with Denise above - never stop telling your story. Please.ReplyDelete
this post, and your story, humbles me. I can get worked up over people who don't vaccinate, but you obviously have real reasons for your stance. There are many children who, for various reasons, should not be vaccinated.ReplyDelete
My sisters and I all have autoimmune diseases, and we chalk it up to living in ag land where DDT was sprayed regularly. But who knows? I certainly don't.
Look forward to more....
I have similar notes from my eldest's childhood. I even drew graphs, plotting the number of seizures per month and drawing a line to connect the dots - like a jagged, serrated jack-o-lantern smile across the page of graph paper. After every single vaccine she seized. After her MMR, she seized like a mad woman for days.ReplyDelete
All my other children have been vaccinated, but I spread them all out and separated them to lessen the possible side effects. My pediatrician worked with me and everything ended up being okay. I understand both sides of the argument but because I've stood on both sides of the fence I feel like it should be an individual decision. I've always been pissed off at the State of NJ telling me what I "need" to do. I don't know the answer but I'm happy we're having a dialogue and that they are interviewing YOU because you need to be quoted in every publication in the world!! :)
Let us know when it's published :)!!
Yes Denise exactly there is nuance and it is frequently absent from the discussion on this topic, and many other topics as well. Not sure if this article or others will ever manage to address those nuances, but hopefully so. Many people do not do well with nuance, but prefer to take an all or nothing stance, and the media is not generally known as being especially nuanced in its analysis and presentation as far as I can tell. But one can always try and I do think it can be worth it in the right situation. Thanks to Elizabeth for giving it a try.ReplyDelete