It had been a beautiful, sunny, 77-degree day in Los Angeles for four days. I spent most of that time in a hotel at the bottom of the Hollywood hills. I should have been having the time of my life but instead, as I walked along Hollywood Boulevard looking at the stars in the sidewalk, I was stressed out, exhausted, full of anxiety, missing my family, and questioning why in the hell I was there…. Or more to the point, why in the hell I’m still doing this after ten years.
Ten years ago, my world got turned upside down when my daughter regressed into autism. Intensive medical testing revealed that she had primarily been poisoned by mercury (that likely came from many sources), and intensive medical treatment under the supervision of an MD improved her condition remarkably.
Most upsetting, intensive research revealed it was preventable. I have spent my time since trying to not only hold those accountable for what happened accountable, but also trying to prevent it from happening to anyone else. Needless to say, it hasn’t been easy.
I was thinking about all of this as I stumbled across the star for Penn and Teller just off of the corner of Orange and Hollywood. It seems today that no matter where I go, no matter what I do, I cannot escape the controversy about it. I used to be able to just turn off my computer. I’m not so lucky anymore. I stood on top of their names for an extra moment for the symbolic satisfaction. (Penn and Teller created a scathing video ripping on parents of vaccine-injured children like me for what we are trying to do.)
The night before, I had helped put on the premier of a new documentary called Trace Amounts at the Chinese Theater in Hollywood. Trace Amounts is the story of the controversy told through the eyes of a man injured by a Thimerosal containing vaccine. After recovering from his injury, he felt compelled to share what he went through and what he learned about how and why it happened. Like me, he also wants to prevent it from happening to anyone else. Over the last few years we have become friends, and he asked me to join his team last fall. I gladly accepted.
It sounds glamorous, going out to Hollywood, meeting celebrities, taking pictures, walking the red carpet, and getting an inside view of how the Hollywood machine works. I have done it a few times, and yes, it can be a lot of fun. Admittedly, it’s a small bright spot in an otherwise dark situation. But lately, the excitement has worn off.
Esai Morales and I before the show.
I’m tired of the reason I’m at these events. I’m tired of the controversy. I’m tired of incessantly having to explain the science, the scandals, the politics, my position, and regardless, still get mischaracterized and slandered. I’m tired of lazy, inaccurate journalism that serves as a mouthpiece for the medical industrial complex instead of as an objective skeptic making sure they are telling the truth…. which I grew up believing was their job. Most of all, I’m tired of the lies, half-truths, and misrepresentation of the issues and the evidence.
RFK, Jr. being interviewed by the press.
My final afternoon in Hollywood was an intense one. We spent the day debriefing about the event, fielding phone calls from reporters, rolling our eyes at the title of the LA Times report, and strategizing about how to move forward. Phone calls from local and national news outlets and their medical experts came frequently, including as early as 5:45 in the morning.
It was surreal to hear them frankly discuss their skepticism of industry and support of our position on the phone, and then witness a complete about face on the news. At one point I felt sick to my stomach when a prominent doctor for a national news outlet said, “You don’t understand. I have to say one thing when I have my doctor hat on, but I can say something else when I’m being a journalist. The journalist in me believes there’s really something to this. And by the way, my spouse totally believes it, too.”
After that call, and another from an insider regarding the Dr. Bill Thompson whistleblower case, I really just wanted to go home. Yes, the weather was beautiful and the thought of going from 77 degrees and sunny to 6 degrees and snowy was depressing, but the thought of being in the safety of my own home with my husband and my family was all I could think about. I downloaded the Uber app and requested a car.
I had never used Uber before that day, at least not directly. The whole concept seemed a little scary to me, getting a ride with someone who happened to be in the area and not affiliated with a taxi service, but when I found out they are intensely vetted and are substantially cheaper, I decided to try it. My ride was there within two minutes.
The driver was a younger guy, maybe 30 at most, with a thick accent, an environmentally friendly car, and an even friendlier disposition. He was quick to make conversation and within a few minutes I discovered that his friend had attended the movie premier, that he was originally from Pakistan and then New York, and that he was now in LA to become a life coach.
I had never met a life coach before, but I have always been fascinated by the idea. It always seemed like such a California thing to me, and sure enough, this proved it. I was eager to pick his brain and learn how he made that decision. Even better, I wanted to know what being a life coach actually entailed or how you became one.
I could teach the world a thing or two about life, I smirked.
He talked about his experience growing up Muslim and his burning desire to examine his faith and others on a more intimate basis. He spoke of an institute in LA for spirituality and recommended a book by the founders of the school. It was then I pulled out my Eckhart Tolle book “A New Earth” from my purse. I had purposefully brought it with me on this trip to keep me centered.
If you’ve never read it, I have found you either get it or you don’t. But if you do “get it”, you realize the very profound but simple way of understanding humanity it offers: that we are spirits who have an ego, but that the ego is not who we are.
The ego is what demands to be right, seeks to find the “other” in others, can never have enough, do enough, or be enough, is always unsatisfied, and lives entirely in the past or future. The ego is what will kill those who think differently. The ego is what slanders, attacks, marginalizes, gossips, and hates. The ego is what loves to relive past trauma and pain. The ego is what has an insatiable desire for more, even when more is destroying its host. The ego is the root of what we call evil.
Eckhart argues that the state of living in the grip of the ego is best described as “unconsciousness”, and that by simply becoming aware of the fact you have an ego and that you are not these possessive, obsessive, dysfunctional thoughts it has, but rather the being that realizes that, you can become “conscious”. It is through consciousness, he believes, that we must evolve as a species or die. It’s not hard seeing why he would think that given our current ego-driven world on the brink of madness and self-destruction.
I found his ideas fascinating when I first discovered them 8 years ago, and I have kept the book near my bedside since. When you are immersed in a controversy like I am on a daily basis, your faith and your belief in a purpose for all of the pain magnifies. It has been absolutely instrumental for me in being able to keep my head above the water for many years. When you remember you are dealing with other people’s unconsciousness, it makes things a lot easier. The current measles mania is no exception.
My driver was excited about my spiritual interest and knowledge and was eager to find out what drew me to them. I shared that although I was raised Catholic and am still a practicing Catholic, I was always open minded about other faiths and ideas and always interested in learning more about them too. I also shared that I had felt so much heartbreak over what had happened to my daughter, that I had to find either some meaning or some way to cope if I were to make it through the rest of my life. Thus, my search for meaning began.
He was a little perplexed by my profound sadness and asked me to explain what I was so upset about. As usual when this happens, I use the words I have often used to do so, only because they are the best way I have found for me to describe it. They are tough to hear, but frankly, I don’t care anymore if anyone approves of how I feel or not. Plus, they were very fresh in my mind.
An article I had written a few days before had used them, and that article was getting a lot of attention. It had over 100,000 views, over 10,000 shares, including on a celebrity’s Facebook page, and I was still getting personal email by the hour that very day from around the world with people complimenting and thanking me for writing it. Crazily, I had not received one negative or hateful reply in response among hundreds. That has never happened before.
“I feel like a mother who lost a child that is still alive,” I said matter of fact.
Strangely, in spite of having written those words so recently and having said them as many times as I have, a lump started developing in my throat as I did. That immediately alarmed me. I have been able to talk freely and without tears about Eve for several years now. I thought I was past this. Even the article I wrote didn’t make me cry when I wrote it, even though dozens of commenters assumed I must have been bawling. I blamed my unexpected emotions on the stress of the week.
He came to a stop and turned around as far as he could. He looked straight into my eyes with his eyes wide open and quietly said, “I don’t know what to say. I have never heard someone say that before. I…. I… I can’t imagine what that might feel like.”
To help, I compared it to Alzheimer’s, which is probably the most accurate description there is. The body is there. The person you love is in there, but you can’t get access. It’s heart wrenching. Only this is with a child. This is a child you never got to know before they were taken away. This is a child whose life was stolen. The injustice and pain is all consuming.
I then explained that there’s no closure. There’s no relief. There’s this perpetual state of fear and grief and sadness and wonderment at what could have been, and somehow, among all of that, you still have to be present enough to function and go to work and run your life on a daily basis. You still have to fight for this child. You still have to believe you can reach them and save them and try. And you still feel obligated to help others avoid this fate even if they don’t want your help.
I felt myself getting angrier and more emotional as I spoke. The doctor’s words… “I have my doctor hat and my journalist hat…” were swirling in my brain. The recordings of Bill Thompson admitting what he did as a CDC researcher and now federal whistleblower, which I have heard in their entirety, echoed in my ears. The face of the LA Times reporter who threw us under the bus with her ridiculous headline flashed in front of me…then the Penn and Teller star…and then the desire to suddenly want to spit on it.
I was just about to burst into tears when he spoke.
“Can I offer you something?” he said sincerely and peacefully, as if he could sense I was on the verge of a breakdown.
The question threw me for a second, thinking he was referring to water or a snack. Offer me something? And then I realized he meant advice.
“I know you said you’re Catholic, so I don’t know if this is something you’re open to or not, but a lot of religious and spiritual teachings believe the soul is on a perpetual journey. That it keeps coming in and out of the world as we know it, as many times as necessary to learn what it needs to learn, to experience the world as it needs to experience it, and to serve the world as it needs to serve it. I believe all souls go through stages, first as a learner and last as a teacher. And I believe, as do many of the greatest spiritual teachers alive today, that the truly greatest spiritual teachers come to us in the form of sick or disabled or victimized children.”
I looked at him kind of crazy for a second, trying to process what he was saying. Before I could ask, he continued.
“What I’m trying to suggest to you is, well…. Is it possible your daughter chose this? Is it possible her soul knew exactly what it was getting itself into, and that it did it on purpose because you are the exact right mother to learn from what she’s experienced? And is it possible this is your soul’s journey, to learn from her and teach others?”
I was obliterated right then and there. The tears started flowing down my face, and a sense of relief and enlightenment that I had never experienced before came over me. Whether he was right or not, he had offered me a brand new way of looking at and living with this experience that for the first time made some sense. It gave me some relief. It offered me some hope. It filled me with peace, even if just for a moment. It’s hard to put into words what that feels like when you believe you will truly never feel it again for as long as you live…and then do.
It took everything in me to keep it together and not start uncontrollably sobbing. The thought that not just my daughter but also all of these affected children are here to purposely teach us, to offer themselves to the rest of us for our benefit…it was powerful beyond words. It instantly provided me the chance to change my heartache to gratitude, my tragedy to a gift.
We arrived shortly thereafter at LAX, continuing the conversation about other aspects of religion and spirituality the whole time. I had known this person for maybe 45 minutes… I still didn’t even know his name… and I had been more affected by him spiritually than almost anyone I’ve ever encountered in my entire life.
He grabbed my bags out of the trunk while I got out of the car, and crazily, or maybe not, we hugged for a good five seconds. You would have thought we were great, lifelong friends, not complete strangers. We joked about nothing ever being a coincidence, and he handed me a card to contact him if I ever needed to talk.
I walked into the airport feeling light, enlightened, and even somewhat relieved for the first time in a decade. I couldn’t wait to get home and look at not only my daughter, but also my other children and my husband, in a brand new way. And more important, whereas an hour earlier a tight fist was in my heart, in my belly, and in my head, at least in that moment, I could now take a full breath in peace.
It is my sincerest hope my soul’s journey will someday offer others the same.