I used to live like an island. I had my own well being in mind with every move I made. I bought organic. I went to yoga class daily. I was a raw vegan -- not for political reasons so much, but because it was the best thing for me. I meditated and affirmed, and I believed I could protect myself from negative experiences by thinking positive thoughts. I believed in my island. But when I gave birth to my children, the whole world entered my island all at once. "Have you ever been exposed to toxic chemicals?" My genetic counselor asked me. "Because we can't find anything in your daughter's genes that would lead to Kabuki Syndrome or Pierre Robin Syndrome," she continued. "I don't think so," I replied. "I used this anti-dandruff shampoo once during my pregnancy. That must have been it. I shouldn't have done that." I tried to contain the tears of guilt welling and swelling. "No," she reassured me. "You'd need something with a lot more umph to it than that to cause a deletion in your chromosomes." I spoke to my brother, and he reminded me of something I had forgotten about our youth.
I used to live on an island. From the time I was about nine until I was fourteen, I lived on Rumsey Island in Joppatowne, Maryland, in the Chesapeake Bay. My brother reminded me that about half of the island had been fenced off with signs saying "Keep Out" and "Danger," things like that. We never thought twice about it. My brother and his friends used to find holes in the fencing and sneak in to have bonfires and do other teenage rituals. They went behind the fence because they learned through experience that no matter what they did, no police offer would ever follow them back there. At the age of 35, he finally understands why law enforcement didn't think it was worth it to cross that barrier. This was a small island, and we had a boat. We lived right on the water, and we used to regularly jump from the pier and spend long days in the water, swimming, exploring. We never could have imagined that half of the island had been a dump for the U.S. Army since 1923. Although no one told us directly that there were old barrels of radioactive waste buried just feet above our water supply, that napalm had been sprayed and tested there, along with other toxic chemicals, it was publicly disclosed at the county or state office, had anyone ever wondered, thereby making it officially legal. We didn't wonder. We just assumed something like that wouldn't happen to us. But it did. I presented the publicly disclosed documents with the chemicals and locations listed on them to the genetics team investigating my daughters' conditions, and I asked my genetic counselor, "Would something like this have the umph to delete a few chromosomes?" She scanned the page, eyes widening, lips tightening. Her reply, "Heck yeah."
When both of my daughters were born with chromosomal deletions causing life threatening craniofacial issues along with other lifelong problems, the world's chemical foibles were all of the sudden my very own. Beginning at 4 weeks old, my daughters required 11 surgeries to allow them to breathe and eat. In the hospital, I got to know the nurses pretty well. The first thing each nurse asked me was, "Are you from Bakersfield?" And with a shift change every 12 hours, that's about 14 nurses a week. They would ask in a casual way, but with pointed, curious eyes. "No," I would reply, eventually learning that about 80% of the kids and babies who show up at UCLA come from Bakersfield, CA. The nurses have a running joke that they know isn't funny, and it's just this, "Don't get pregnant in Bakersfield." Many babies are born with a birth defect in which the internal organs of the baby are not in the baby's belly, but floating outside of them in the embryonic fluid. It's difficult to detect with an ultrasound. When the baby is born, they have a procedure in which they drop the organs back into the belly using gravity and special sacks. This works, but the organs themselves don't function as well as one might wish. These children often require I.V. feeding throughout childhood, in which fats, sugars, and carbs are delivered directly into the blood as opposed to through the belly. But this way of feeding is hard on the liver and kidneys, and organs often fail by the time the child is 8. Then, these children hopefully get new, replacement organs. But these new organs really only last 10 years before they need replacing, a fact -- the nurses told me -- the medical world does not bother to share with the parents. Why further traumatize them with details? Is it better to placate and pacify? It would not be my first choice. But why Bakersfield? The nurses had a theory about this too: Bakersfield is a farming community. Pesticides, insecticides sprayed on the land sink into the water supply. A working class community, the people are too busy surviving paycheck to paycheck to complain or investigate. And even when a voice is raised, is it heard? And by whom? There are lots of farming communities in our nation -- and world -- could these problems be this wide spread? The answer is yes.
The longer I stayed in the hospital with my girls, the more apparent it became to me that what I saw as our very own special, big, overwhelming problems were little hiccups compared to what other kids were enduring. How many of the children's problems were connected to chemicals in our environment? Cancer, organ failure, birth defects ...
I used to be an island. Even as I sit here typing these words, I feel my world falling to pieces inside me. My illusion of any control over my bubble, my island, obliterated by the arrival of my little baby girls and their health problems, mystifying me, and even confusing doctors with enough degrees listed after their name to melt an iceberg, time and again rising and threatening their lives, their ability to function and thrive in this world. But it is this inner explosion moving me to reach out to you, hoping that you will read and understand my words. Hoping that you might understand what I couldn't understand until it became part of me. The problems of this earth are our problems. The problems of your neighbor are also yours. The solutions are in your heart and mine, and they belong to all of us.
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/e hug