A Strange New World

When you read about a child with a different disease, why is it so difficult to relate? When many hear about family or friends with Lyme Disease, PANDAS, autism, genetic issues, why do we suddenly fall into groups of "us" and "them"? Most people are filled with compassion, yet an invisible wall stands in the way of true understanding. Sometimes this wall fades in time, sometimes it leads to the ends of friendships and other times it leads to friends or family becoming aggravated with not the disease itself but the person who bears the illness (or the person's family.)

There was a time when, if I heard about Lyme Disease, I never thought about all those years that I spent playing in the woods. Because I learned about Lyme Disease later, I didn't think that the ticks could be bearing this bacteria when I was a child. (Oh, they were!) I saw Lyme Disease as something that a few unlucky friends were forced to endure. Going through this experience as a parent of a child with a disease, and then, as a patient myself has led me to wonder about the manner in which we classify our environment. I listened, perhaps with half an ear, but I didn't really hear. Until it hit home.

A wise educational consultant I know preaches about cognitive dissonance as an effective and necessary provocation to learning and change. Without questioning our beliefs, we stay stagnant. 

But change is so hard! When I was in my twenties, one of my good friends got married and had her first child. Suddenly, my phone calls to her were chorused by wails and baby chirpings and her murmurs of, "Just a moment." I couldn't have a decent conversation with her...not like I used to! What a pain in the butt it was that she had a freakin' baby!

Then I had my own child. I entered into that mystical world only to find myself reamed by one "friend" who quite voraciously demanded to know why I hadn't returned her phone calls ASAP. I had changed and this friend didn't like it one bit.

When I was 18 and away at college, I begged to intern at a shelter for abused women and their children. My own parents were going through a tumultuous divorce (no violence.) I was fresh out of a suburban town, very niave and extremely ambitious. Hence, I was totally in-over-my-head at the shelter. Women from all walks of life came. I remember cutting open huge blocks of government cheddar cheese there (this was before the Costcos and Sam's Clubs) and this alone startled me enough to make me detest cheddar cheese for a while.

I was terrified. We worked out of an ordinary house on an ordinary street but the husbands and boyfriends of these women were far from ordinary and I was so afraid that one would hunt us down with a gun. I had barely experienced relationships and I really couldn't relate much to these women. So I worked with their kids and helped set up a playroom. It wasn't my first experience working with a population that would make me uncomfortable. It wouldn't be the last.

Do we truly need discomfort to learn? To grow? To see the world in a more enlightened way? 

Years later, when I returned to school for the umpteenth degree, I worked in inner-city Bronx, teaching second graders. I loved the children but the environment was a shock for me. I had grown up in green, woodsy, safe suburbs. To get to this school, I had to take the #2 subway to a stop that was about 4 flights of stone-walled stairs below ground. I emerged from the subway into a dungeon and climbed out, only to enter a neighborhood seldom seen by most of the world. The teachers always left school at 3:00, with the students, because the area wasn't safe. For evening parent conferences, those of who who lived in Manhattan had to hire a car to pick us up because taxis wouldn't drive the streets at night.

The 2nd graders told stories...of guns, knife fights, drugs. They had seen too much--much more than I had. This was an entirely new world to me. Yet despite the fact that they already knew that condoms could protect people from AIDS (I did NOT ask them for this information,) they retained a childhood wonder of the world. One little boy, Nathaniel, wanted to be president of the United States some day. He was very good with math but struggled with reading. He hadn't been born here in the USA but I wasn't going to be the one to destroy that dream. 

Before working with these children, I only tangentially knew that these worlds existed. I hadn't lived it, seen it every day, breathed it. Even when I worked in the Bronx, I'd take the subway back to my Village apartment or go out for a drink with friends on the Upper East Side. But more often, I'd go home to reflect on my teaching or mostly, to worry about the children. Jason, whose mother favored his sister and whose father was in prison. Catese, whose mom worked hard to build a better life for themselves. That little boy with the huge brown eyes who missed so much school. The one who'd do something mean the moment I turned my back. Little Keisha, whose mom had died, whom I dreamed about adopting until I heard that her grandmother would formally adopt her. 

Living in this world helped me to understand it better. I was no longer a complete outsider. I had come to see the beauty in children who grew as wild roses between cracks in the sidewalks. I let myself love them. I let myself change. My compassion for children growing up in inner cities bloomed. And my admiration for people who survive these challenging environments increased with understanding.

Those of us who experience PANDAS and Lyme are catapulted into a place of cognitive dissonance. Our children are suddenly not acting like children should. Overnight, their personalities disappear. They might be suicidal...at the age of 8. We deny it at first, think that they're just going through a stage. We fear that they've been sexually assaulted. Finally, we realize that this dis-ease of the mind is not going away and we start to accept that drugs are necessary to save their lives. Some of us hospitalize our children. Doctors look backwards into the family genealogy in a hunt for mental disease (and hey, there's always some.)

Once we have come this far, and the drugs are not working, we learn to question doctors who cannot find answers, doctors who blame parents for not giving enough consequences or for being too lenient or loving, doctors who get angry because they can't figure out why the meds they prescribe don't work. Despite the naysayers who tell us to avoid the internet, we parents research the symptoms. And eventually, we find others like ourselves.

Those of us who have first-hand experiences with hard-to-diagnose diseases have pretty much fallen down rabbit-holes. We are forced to deal with conflicting beliefs such as: do most doctors really know every childhood disease that afflicts our kids?  Are vaccines good or bad? Can Lyme truly be cured with 3 weeks of doxycycline (minocycline for children?) 

No. No. No. Those of you who have not slid down the rabbit-hole probably still believe in doctors knowing so very much, still believe that the pharmaceutical industry is here to protect us, still believe that Lyme only happens to people who hike and garden in New England. You know what? It feels so good to be able to trust in doctors. So good that I kept on searching until I found doctors who are experts on PANDAS and Lyme. 

I have spent countless nights reading and reading--grappling with my ignorance, striving to understand concepts that have seemed and continue to seem beyond me. I still don't completely get methylation, parasitism (not sure we have to deal with that here--my kids are both OK on full moons, but I could be wrong,) mast cells, etc. I was a psych major, not a biology major. Learning all this is more than cognitive dissonance for me--it's cognitively overwhelming!

If I'm living in the rabbit-hole, the best way to help myself is to map it out. That's what I do. That's what all the parents with whom I'm in touch spend their time doing. 

Those of you who are above ground often deal with a different rabbit-hole, one I don't completely understand. We all have different issues with which we contend. If we're in each other's lives, it would be ever so lovely if we could share our experiences and express mutual admiration for our survival skills. If that's not possible, we must refrain from knocking each other down, from separating into "us" and "them" categories, from criticizing each other. In many ways, we are in the dark ages; there is so much that we really don't know about the brain, disease, the world. 

Try on a little cognitive dissonance today. Feel uncomfortable just a little as you learn something new. Maybe both you and the world will be better for it.