Sacred Spark

Author // Lisa Sykes, Rev. MDiv

Sacred Spark is the compelling, true story of a child affected by mercury poisoning, and his minister-mom’s decade-long battle to restore the light in her son’s eyes. It is also the inspiring story of Reverend Sykes’ work with the United Methodist Church to pass the first global resolution advocating the elimination of mercury from medicine, a nascent social justice movement on par with historical faith-based campaigns against child labor and slavery. With pragmatism and compassion, Sacred Spark calls for putting the well-being of children first.

Appearing in Issue #21. Order A Copy Today

Through Sacred Spark’s unflinchingly honest, first-person account, parents and physicians demanding safer vaccines will find clarity to support their informed choices as well as inspiration and guidance to become advocates for children. Woven seamlessly into the book’s engrossing narrative are Rev. Sykes’ victories in appropriate and landmark biomedical treatments for her son, the success of empowered parents to enact state bans on mercury and to approach Attorney Generals across the country, attempts to find precious allies against a corrupt and protected industry, and her family’s lawsuit defeat against a pharmaceutical company.

As a Princeton Theological Seminary graduate and minister of 19 years, Rev. Sykes inspires the reader to go beyond compromised scientific studies and profit-driven political debates, and examine the mercury/autism issue through the first-hand experience of a mother and the faith and conviction of a minister. Sacred Spark ultimately teaches us that it is ordinary people who ignite the fire of reform.

An Excerpt from Chapter 3: Chelation

It was perfectly white as far as the eye could see. Wesley, whom I held in my arms, sensed he stood at the brink. There at the edge, where identifiable outlines and hues disappeared, he clung to me with his arms about my neck and his legs wrapped about my waist. His physical proximity, his closeness, his touch, was so unusual in these days. When I did experience them, it was because Wesley was experiencing great fear. Too, he was cold. He was cold because he was naked. And he did not understand how his mother could be so cruel.

There were tears on my cheeks. Just when I thought I’d become accustomed to them, the torrent seared my face again. I had always planned to be so happy, and such a good mother. And now, I knew, in these moments, I only terrified my child. Truth be told, I terrified myself also. I tried too hard to comprehend the enormity of my life, lived its length, with Wesley’s autism. I tried to comprehend the daily struggle to remain sane while my child suffered sporadic and indescribable agony. Autism instructed my soul in desperation. There were times I wondered if my spirit and mind could withstand the strain. There were times that Wesley’s panicked reactions convinced me that neither of us could. This was one of those moments.

His panic, like so many other things, was an enigma. I was oblivious to the oblivion he perceived. I knew only that I had one immutable goal in mind for this cataclysmic moment and that was to give my autistic son a bath. After Seth and I finally succeeded in wrestling our son into the tub, we sat upon the ceramic tile, restraining Wesley by the shoulders to keep him in the water, and stared at each other, exhausted. How could it be that giving our son a bath had become so impossible? We did not yet understand the terror now in Wesley’s soul because we had not yet grasped the havoc that mercury had wrought in his brain.

Once Mary Megson, M.D., made her diagnosis, once she boldly decided to risk her standing and her medical career to speak the truth to me, the course of treatment before us was clear. Wesley’s body had been injected with poison. The preservative in his childhood vaccines, which he received from birth to two years of age, and in my Rho(D) shot, which I received when I was 28 weeks pregnant with him, was Thimerosal, almost fifty percent mercury by weight. The mercury injected into my son as part of these FDA approved drugs would remain in his body, wreaking havoc, unless Seth and I chose to treat him, and pull it out with chemical compounds designed to bind with the mercury. The process of extracting it was called chelation.

Seth and I gained courage by researching the history of lead poisoning that resulted from paint only decades earlier. The agent used to detoxify a child of lead was the same agent used to detoxify a child of mercury: DMSA or meso 2,3-dimercaptosuccinic acid. It was a white viscous liquid packaged in a capped measuring syringe. Wesley would have to take one syringeful of the foul-smelling slime every four hours by mouth and around the clock, for three days at a time. The goal of this dosing schedule was to keep the chelating agent level in the blood, so that the mercury, once captured by the DMSA, did not have any opportunity to retreat and hide once again in the tissues until the cycle was complete.

For three days, we would dose Wesley with DMSA, and then for four days we would let him and his weary body rest, while replenishing his stores of zinc, iron, magnesium, and the other good metals, with supplements. Every month we would check his mineral levels and run a complete blood count and liver enzymes to make sure we were chelating him safely.

More mercury. The new test results showed a high level of mercury in Wesley’s urine. This time the line did not run off the page as it had the first, but it still extended past the reference range, and the elevated range, into the final column indicating the need for alarm. I felt compelled to document Wesley, his treatment and his results, now more than ever. I did not yet know how important this would be. Fortuitously, among pediatric patients being chelated for mercury, this blue-eyed child, whose gaze still stole hearts even through the haze of autism, was uniquely consistent. Every time the DMSA pulled a significant quantity of mercury from his tissues, the rash would appear on the backs of his knees. Every time the rash would appear, I would catch a urine sample from my son and send it for toxicology testing. Consistently, these samples showed high levels of mercury. Unlike many other parents, who did not know when their children were dumping mercury because they had no outward sign, I always knew when Wesley was because the rash would appear on the backs of his knees. Because of Wesley’s rash, the luxury of good insurance, and an amazingly supportive spouse, I amassed a comprehensive clinical record on Wesley’s poisoning.

There was no doubt that this particular cycle of chelation was worse than most. After three days of lethargy and an upset stomach for Wesley, the cycle ended. After one full day without medication, Wesley’s head finally lifted from its pillow and a hint of his sweet smile showed about the corners of his lips. The return of that enchanting smile caused tears to gather in the corners of my eyes. With my help, Wesley got up slowly and came down the stairs. It was then I knew something had changed. Instead of twofooting the stairs, allowing one foot to catch up with the other before advancing another step, my son was alternating his feet upon the stairs, one step at a time. Suddenly, my child was descending the stairs as I did, and as he never before had. He was certain of his feet, and poised with his balance, and I was dumbfounded by the change.

This first revelation was followed by a second, while Wesley and I sat on the front porch relaxing after our ordeal. Wesley loved to sit out on the rocker in the breeze, whatever the season, and so I took him there, hoping the caress of spring would soothe him. When Wesley sat down, this autistic child who had always had a bewildered look on his face seemed to gaze with clarity at the world around him, and at me. I puzzled and puzzled over what had changed, unable to discern at first what was so markedly different and yet ironically, too, so subtle. It was then that I realized: Wesley’s pupils had contracted in the bright sunlight. All of the months and years in which he had carried such a horrific amount of mercury, his eyes had registered his toxic state by their dilation, a clinical symptom of mercury-poisoning. Mercury had kept the pupils from shutting down, so that Wesley’s eyes could not limit the amount of light that entered on a bright sunny day. Is it any wonder that he would sometimes fall to the ground and scream when moving from inside to outside? At times like that, I had been powerless to stop the light from momentarily and painfully blinding Wesley.

But now, in the softness of full daylight, Wesley did not construe the sun as his enemy. Instead, the light gave impetus for his eyes to react as they always should have, and only now could, because a substantial amount of mercury had been pulled during those three long days. I guessed, and Mary would later confirm, what Wesley had regained was his depth perception. How long had it been since the world made any visual sense to my son? Did the mercury from the Rho(D) shot lodge in his brain before birth, corrupting his vision in infancy? Or did the immunizations, with their additional and excessive loads, overcome his ability to see normally while he was a toddler? Unable to answer these questions, I set my jaw, and clenched my fists in an anger that, like the mercury, was quiet yet catastrophic.

It had never occurred to me that my son was effectively blind. After all, his eyes moved intentionally. In fact, they seemed perpetually and futilely to search and seek for something indefinable. But the information they captured, when sent to the brain, was received by tissues tormented by the mercury. Depth perception had disappeared from Wesley’s field of vision. Though his eyes might see, his brain could not perceive his surroundings with any accuracy at all. The world was, for Wesley, a maniacal fun house. Worse than a hall of mirrors, what Wesley saw in his field of vision as he took each step up to this point in his illness, was precipice and abyss and blizzard. His inability to see normally, and the terrifying nature of what he did perceive, caused him to bump into walls and stumble down stairs.

I chastised myself for not understanding how my child had struggled to process the outside world until this dramatic change. The change in Wesley’s pupils and his new ability to transition into the sunshine, walk down stairs, and suddenly match a picture to its corresponding 3D object during therapy, might have seemed dramatic, in and of themselves, had it not been for the bath.

Had I only understood that Wesley had no depth perception from the time of his diagnosis to this point, I would have known why he hugged the faucet once Seth and I finally succeeded at wrestling him into the tub. It was the only violation of the white, the only beacon in the storm. Shiny and gray, the stainless steel faucet protruded in stark contrast to the white abyss of the fiberglass shower. In order to have this only point of reference to secure him, Wesley had to be within two inches of it. Therefore, he would plaster his back against the tub directly beside the faucet, and refuse to move anywhere. I had no idea that for Wesley, the spigot was a flag in the blizzard, and a meager promise of return from a world of white infinity. That faucet was Wesley’s only hope of ever finding his way back to a place where there were shapes and colors, however odd they might seem to him.

At last, I knew why this naked child clung to me as if he would die, should I let go of him, whenever I tried stubbornly to place him in the bath water. My precious child, my second son, thought his mother was about to pitch him into a chasm when I, instead, was only trying to get him into the tub. For me to hold Wesley by the side of the white fiberglass tub, I now realized, was for me to dangle him over the sheerest cliff on Mt. Everest. Wesley feared for his life, convinced that if he let go of me, he would fall for an eternity through the nearly seamless and smooth whiteness. And in the face of such terror, he could utter not one single cry, nor explain to us the horror that gripped him, just as he gripped me.

Now, after an unusually large dump of mercury in Wesley’s urine, Seth and I watched in amazement as our little boy sat gleefully in the tub and splashed in the water as he once had in infancy, before mercury fully invaded his brain.

Pathways Issue 21 CoverThis article appeared in Pathways to Family Wellness magazine, Issue #21.

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