There are moments when the magnitude of something that has happened in my life rise up and unexpectedly grab me by the throat. The favorite song of a friend who died too young. The smell of my grandmother’s perfume on a letter she wrote. The voicemail my Godmother left that I’ve never erased. The favorite t-shirt of my five year old son, and the memory of him it.
He’s 20 now.
These are the moments when life takes hold and won’t let go, even if only for a second, reminding you of how fragile it is, how special it is, and how quickly it goes. Reminding you of the best and the worst, the happiest and the saddest, the most joyful, and yes, the most painful.
The challenge of it all is how to make it less painful, and in my experience, that’s with a lot of prayer, a lot of writing, a lot of crying, a lot of running, a lot of family, and a lot of friendship. One day after years of moving forward, one step, one day at a time, you suddenly realize, hey...that doesn’t really hurt like it used to...or sometimes not even at all.
For the truly tragic things we experience, however, I’m not so sure those ever really go away.
Like so many people, I have experienced a lot of pain. Lost dreams, lost love, and recently a lost marriage shattered the image of the life I had once envisioned. Some losses I own, some just happened, and others were stolen. I accept what I am responsible for, and I’d like to think I have forgiven those who have stolen from me in one way or another, but every so often, I realize….
I have not.
Well, at least one of them I have not. The loss of my daughter to regressive autism.The most painful and difficult loss I have ever experienced and hopefully ever will.
From the time she slipped away beginning around 8 months of age until only a few years ago, I lived in a low level chronic state of anxiety, anger, regret, and guilt. I was often overwhelmed by her needs and more so why she had them to begin with, and I largely put the blame for all of it on my own shoulders.
I wasn’t a good enough mother. I didn’t ask the right questions...do the right research...see the right doctors...do the right therapies...do enough therapies. I was the reason it happened, and I was the reason it wasn’t better. ALL the way better. Not some of the way. Not a little bit better.
We got more than most, and for that I am forever grateful. But make no mistake, I wanted more. I still do.
When my greed got the best of me though, when my passion for the cause, the cure, and the justice she were entitled began to interfere with my well being, however, I knew something had gone wrong. The work I was doing was important, yes. But so was I. And I had forgotten to take care of myself along the way.
So I finally took a break. Last summer, for a long list of reasons, I made an abrupt departure from the autism advocacy world. I left social media groups and email threads. I stopped visiting my normal websites and blogs, and I let the rawness of that empty space in my life wash over me like a cold shower. At first it was incredibly uncomfortable, and I wanted to quickly get out. But as time went on, I grew used to it. I was awake in a different way than I had been for some time.
It was not so long before I made the decision to depart from activism for a while that JB Handley resurfaced. JB, whom I had come to know back in 2004 on several Yahoo internet chat rooms, was not only someone I considered a friend, he was also and more importantly a personal hero of mine.
It’s hard to overstate his influence in the movement or on me, from launching Generation Rescue, to starting the Rescue Post (now Age of Autism), to filming the documentary “Autism Yesterday”, to creating the 14 studies website, and so much more...he was a one man machine who took no credit and no prisoners. I was in awe.
So when he returned to the advocacy scene, it was nothing short of exciting. Rumors had circulated for years about what he was up to, our own man of mystery if you will, and it wasn’t until the measles outbreak of 2015 that he decided to resurface.
Turned out, he was just busy living his life.
I followed him on Facebook and watched his posts and blogs become increasingly more technical and focused. I sensed my friend was back in a much bigger way than he had intended, and I felt that old sense of purpose I always got from him. Although I wasn’t sharing much anymore about the cause, I always shared what he wrote. JB always had one mission and one mission only: to end the autism epidemic.
It was no surprise that was going to be the title of his new book. (How to End the Autism Epidemic.)
When the time came for the book to be released, several of us were invited to read a sneak peak. I was thrilled to be a part of that group, and within hours of receiving it, devoured it whole. It reminded me precisely of the time I did the same with David Kirby’s Evidence of Harm and Dan Olmsted and Mark Blaxill’s Age of Autism: Mercury, Medicine, and a Man-Made Epidemic.
Which is why I should have been more prepared for the profound effect it had on me. Both of those aforementioned books swallowed me whole, providing moments like I mentioned when life reaches up and grabs you by the throat. Those books brought me to my knees. The first, literally knocking me to the floor in an effort not to throw up, and the second, literally bringing me to the floor in a complete and total break down.
Thankfully, JB’s book didn’t have quite the same effect. I didn’t fall to my knees after reading it, no. This time it was different. Instead I stood up tall, rolled my shoulders back, picked my chin up, and took a deep breath. In a quiet moment of deep and internal knowing, I breathed through the truth I have carried with me since that fateful day in 2004 when I first read about the Lilly Rider (look it up if you don’t know what I’m talking about).
Something catastrophic has happened to our children, my very own child in fact, and I have a responsibility to do something about it...whether I like it or not.
Much of the book read like my own life and my own digital library. There was little of the science or the politics that I didn’t yet know, including some of the most revealing aspects of the included depositions. (Spoiler alert: some of the world’s foremost experts on autism have testified under oath how vaccines can and do cause autism in certain children.) I had been around long enough and working with enough amazing people in this arena to have heard or known a lot of it.
But where once I relished that kind of knowledge, time had often made it too heavy to carry. It’s a horrible thing to know what happened to your child and not be believed or helped and even ostracized, all while very powerful and influential people know exactly what happened and why, say so behind the scenes, and allow it to continue because they are afraid.
It wasn’t just Bill Thompson at the CDC sounding the alarm, or celebrities with affected children quietly funding us because they could not take the chance of going public. It was journalists, too, some of whom would literally be on the phone with us saying they knew we were right in one breath, then implying we were lunatics on (pick a network) the next.
It’s like living in the Twilight Zone at times, and frankly, that’s not a fun place to live. Which is partly why I sat in silence for some time after finishing the book, just digesting and contemplating its significance.
Could this be it? I wondered. Could this really be the thing that tips the scales?
Boy, I’ve thought so many times in the past we had. The Poling decision. Bill Thompson. And about 15 other things. Overwhelmingly, they just ended up going into the advocate echo chamber, it seemed. Would that be the fate of JB’s book too?
(I mean, for God’s sake, it includes testimony in a court of law, under oath, by the experts, explaining how vaccines cause autism, why, and in whom. It also provides all of the science that proves they are right. Can we just move on and stop this madness now?)
Only time will tell, but based on the sales and rankings so far (#1 in multiple categories on Amazon, and breaking into the Top #100 of ALL books on its first day), I’d say it has just as much chance as anything like it before. I called JB the night before the launch and I laughed at his response when I asked him if he were excited for the release.
“I’m skeptically optimistic,” he replied. And I knew exactly what he meant. How can anyone not be at this point, especially if you’ve been at this for a while? Truth be told, I think the jaded part of me lost the “optimistic” part a long time ago.
So we’ll see what happens. But the bigger point is this. Whether or not this book changes things once and for all, it adds to the tower of evidence that has been accumulating for decades. I surrendered a long time ago to the realization that dogma doesn’t change overnight. Institutions don’t usually crumble in one day. Powerful people and organizations fight for survival like the rest of us, and oftentimes, he with the most money wins.
But not this time. For some day, hopefully sooner than later, and hopefully in my lifetime, the truth will prevail. The idea that vaccines can cause autism, just as cigarettes cause cancer, or DDT ruins the environment, or Vioxx causes the deaths it was meant to prevent, will seem as obvious and acceptable as the sun rising in the east and setting in the west.
Until then, however, what I really got from the book is that you never give up. Like JB, you walk away and take a break when you need to, but you never let go of the truth or the belief that justice and truth will prevail.
For in the end, it’s not just the epidemic that needs to end. It’s all of the lies that led to it and keep it alive. It’s the lie that it didn’t happen. The lie that our lives and our children’s lives don’t matter. The lie that some children have to be sacrificed so that more can live.
It’s all lies. And we can do so much better than that. We really don’t have any other choice.
Thankfully, JB’s book shines a floodlight where we must begin. Like the experts under oath, it starts with the truth.