The others on the panel are Sean Faircloth, Janet Heimlich and Katherine Stewart, all amazing writers and advocates for the separation of church and state, especially when it comes to child medical maltreatment and proselytizing in school. Richard Dawkins will moderate.
It's an incredible honor and opportunity to have been invited to join them. It's a chance to literally speak for kids who have no voice against the pain and shame that can result from the behavior of their indoctrinated parents. The recent case of a Pennsylvania couple charged with the death of a second of their children from choosing to pray rather than seek medical treatment--in other words, fatal neglect--has brought the issue front and center again. http://www.huffingtonpost.com/2013/05/24/herbert-catherine-schaible-bail-hearing_n_3330907.html I hate that this is what it takes. But we have to keep talking. We need to educate the public and get the state religious exemptions from medical treatment changed.
I survived untreated osteomyelitis at thirteen (and fourteen and fifteen) because my Christian Science parents and practitioner chose "spiritual treatment" for me. I lost the use of my knee forever during those years, and six years ago I had my leg amputated when it jeopardized my health. No surgeons were willing to attempt replacing the fused joint. One said he never saw cases like this except in elderly patients who'd had the disease before antibiotics were available.
But my fused, scarred, bent and eventually amputated leg is just part of the fallout. My life changed from one day to the next when I was thirteen. Not long after my fourteenth birthday, I was in too much pain to get out of bed--for ten solid months. My leg ran with pus day and night. The pain drove me to the point, one summer night, where the only thing I wanted was to die. But again, I had no choice. I lived. And, as happens in post-traumatic stress disorder, my brain changed its own chemistry. It warped into a state to attempt to manage my unreasonable situation, just as it would in battle or as a prisoner of war. These changes are visible on brain scans of people with PTSD.
But for twenty years more, I just thought I was crazy. My moods could plunge without warning into suicidal despair. My whole being thrummed with anxiety almost 24/7. I lived in fear. I was terrible at showing up on time in a schedule for school, for a job. The only routine that soothed me was taking care of my horses. By the time I was in my thirties, having flashbacks and attacks of claustrophobia that prevented me from working, I really believed I was insane. Being diagnosed with PTSD and learning to manage it have changed my life.
What you need to understand is that part of me never got out of that room. Like a political prisoner, the mattress--the small room--the walls are still under and around me. Right now I'm keyed up in an excited way about this trip, but it reminds me of the stress I lived with for decades. And it brings the resonance of that fourteen-year-old girl closer.
The hardest thing I've had to come to terms with about that time is her innocence. The most difficult memories are the ones of being in bed only being able to lie on my back or left side, never moving my leg, unable to stand the slightest jiggling of the mattress--and yet being sure I would be healed. The days grew long and hot, the leaves of the hickory outside shaded my window. I could smell the fresh-cut grass and hear my friends outside. All I needed was to have that single moment of understanding, enlightenment that would let me wake from the mortal dream of having an infected leg. I would sit up; the bandages would drop from my leg; I'd stand up and feel the rug under my bare feet. Then I'd run all the way to the barn and hug my horse. I could imagine it vividly. It was just out of reach.
It never happened. I survived and that girl faded into cynicism and shame. She was angry and confused, imploding rather than exploding, for the next twenty years.
How many kids experience that transformation to a greater or lesser extent? Maybe not in similar conditions physically, but emotionally? Refusing to validate a child's understanding of the world--of pain or health--of her personal realm of a body--derails any hope of a normal transition to adulthood.
I'm able to speak in San Diego because my own daughters have taught me I deserve unconditional love and freedom from pain as much as they do.
I'm going to speak for the girl I was at fourteen, the girl in bed who desperately tried to scrape up a miracle that adults brutally, ignorantly told her was within reach. It's an honor to be asked. It's a tribute to her human grit, the will to live that kept her alive when she was denied any reasonable alternative.
This was the single time a picture was taken of me in bed in 1976. Yes, that's a pet mouse on my hat. Cheers, Liz.
See you on the flip side.
