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To Be or Not Be …….. Grateful

As adult survivors of infant surgery without anesthesia, it’s difficult to be angry about what happened to us early on. We feel grateful for having been helped and saved, and we should. The surgeons, the nurses, the staff, our parents, and families leaned in and lent a hand. We survived because of them. What’s not to be grateful for?

Early in our lives though we were brutalized. Instead of anesthetizing us before the surgery, we were given a drug to paralyze us so that we were awake for the intubation and the surgery. Our families assumed we were given anesthesia and pain relief. Who would have imagined otherwise? The truth is that we were cut open with minimal or no anesthetic, even preemies. The intent was not malicious, but the effects have been devastating for many.

Discovering the real story in my fifties helped me understand the volcanic rage I’d felt all my life. Of course, other reasons for this anger factored in: both of my parents’ rage at their own mistreatment as children seethed beneath the surface. But barely out of the womb, the early brutality we experienced sent many of us in the direction of contraction, helplessness, and suffering. And since my parents were oblivious to the fact that anesthesia was generally withheld from ill infants needing surgery or invasive medical procedures pre-1987, they could not help me cope in the ways that I needed. My mother even claimed that she suffered from my surgery more than I did: “You didn’t feel a thing; I’m the one who remembers,” she’d say.

But as I’ve written and told audiences, bodies remember, breath remembers, emotions remember, and senses remember. Memory isn’t only verbal–a fact few people understand. We survivors suffer as we grow up, for the assault lingers as Post-traumatic Stress, or PTS, and we don’t even know it. We make excuses for why we are unhappy or why our lives are not working out: We’re weirdly wired, we’re super sensitive, we’re crazy, we’re mad.

What happened to us is a hard truth to accept. How could other humans have done this to us? It’s unbelievable, incredible, inhuman, criminal, and wrong. But it did happen, a fact that medicine would rather not dwell on.  Many survivors turn away from the truth because the reality is too painful to admit. They say that it happened long ago and doesn’t matter anymore. However, those early lessons can and often do unconsciously inform every decision we make and every action we take.

For me, it’s time to put gratefulness aside. Time to feel anger and for this anger to fuel action. Time to get the word out so that survivors of infant surgery without anesthesia can know they aren’t crazy, or weak, or wrong. They aren’t “freaks,” a word I’ve often heard survivors use to describe who they thought they were. Time to get the word out that infants were brutalized. These infants grew up. These adults now suffer. And we’ve got to help them. Even just knowing and accepting that infant surgery without anesthesia is real and actually happened is a huge first step in healing.