Sophie got her first Moderna vaccination last week. Before you pick yourself up off the floor or say dumb things like, “Congratulations,” or “That’s fantastic” or “I’m so proud of you for doing the right thing,” etc. let me me say a few things.
First and foremost is that this was a brutal, if not impossible decision to make. I was nervous myself to get the vaccine, but I did it for the collective. I did it with the belief that there was no other way to stop the pandemic and all the suffering. I did it after reading the literature and listening to the experts, including my own doctor. The decision was not the same for Sophie. As a friend noted, “it IS NOT uncommon nor predictable as to when their [children with neurological issues] brain will suffer an encephalopathy with a vaccine or any virus.” The friend also stated, “For us it came down to suffering or dying with a vaccine or spending a month suffering and dying with SARS Covid 2.” Next time you’re tempted to mock someone or shame someone who claims that their child is vaccine-injured, and they don’t trust the vaccines, think of that. Think of that kind of brutality. You won’t know what it feels like though, and you wouldn’t shame anyone, either, if you did.
Twenty-six years ago, Sophie was diagnosed with infantile spasms not too long (what’s too long?) after her initial first vaccines. She received the live-cell pertussis vaccine in 1995, along with four others, and not long afterward the P was replaced because of safety concerns with the DTap in the general population. Do I believe that the vaccines caused Sophie’s seizure disorder? No. Do I believe that the vaccines were a catalyst for seizures that are a symptom of whatever strange and wondrous genetic mutation yet to be discovered or named she might have? Absolutely. Does that mean she “would have had them anyway,” a barbaric comment I heard countless times over the years? No one knows the answer to that question. Do I believe that her life and development was short-changed because of this early introduction of vaccines? Yes. I know that. Do I wish that I’d known, They’d (it’s always they) known that there was no real reason to vaccinate a newborn baby with multiple vaccines in a sort of crap shoot? Do I believe that her life was irreparably damaged by those first vaccines? Absolutely. In fact, I know this. Do I believe that Sophie’s rare reaction to her first set of vaccinations and even rarer reaction to her second set of vaccinations (when we knew nothing and allowed that shit to happen with doctors knowing even more nothing) might be considered the necessary sacrifice for the larger collective? For public health? Perhaps, yes. I’m going to leave that buried in this paragraph for you to contemplate in the darkest hours of the night. You will be given an empathy exam next year. After decades of witnessing tens of thousands of seizures and pumping over twenty different potentially lethal pharmaceuticals (with little to no research backing them) into my baby then toddler who didn’t toddle then child then adolescent then teenager then young woman, do I have any trust in the medical/industrial establishment that prescribed those drugs? No, absolutely not. Fighting for years to promote access to cannabis medicine for all children with difficult to control epilepsy and going up against even Sophie’s doctors who refused to acknowledge that something was at last working was probably the last straw the one that broke the camel’s back the one that made me withdraw from pretty much all epilepsy groups and foundations (on which I’d served as a board member) the one that sent me to the hills with my poetry books. The world is ugly and the people are sad.
So why am I telling you all this? Making the decision to vaccinate Sophie came down to knowing that the likelihood of Sophie not being exposed to Covid was slim to none. The rest was a leap of faith and not in the jesus god help me kind of way. It was the faith in dwelling in the maybe and the probably and the question and the collective. It was sitting with the post traumatic stress syndrome (her jerking baby legs, a needle, her tiny mouth an o out of which came a cry that formed new pathways in my brain and hers, years and years and years of pathways, sweat and tears, copious tears and shaking and rending and tearing) and marveling at it, the way the body holds this thing, marveling at it, appreciating it, thanking it and then letting it go.
May we all be well, happy and peaceful.
May no harm come to us.
May no difficulties come to us.
May we always meet with miraculous success.
May we have the patience, strength, determination and courage to meet all of life’s inevitable failures.
May we be held.
May we be transformed.