In The Trenches

My vacation, such as it is, begins when my kids go back to school in the fall. Summer is tough. During the school year I get some time to myself during the day. Instead of attacking mountains of IEP paperwork or pushing another load of dishes through the dishwasher, I do something really selfish. I read. Putting my needs first for an hour a day helps counteract how out of balance my life feels.

Back to school is the perfect time to talk about books. I’m going to tell you about three books I’ve read over the last few years that have nothing to do with autism and everything to do with maintaining hope in dire circumstances. I didn’t set out looking for anything in particular from these books other than a diversion from my own thoughts or situation. Yet each of them has given something back that was so pertinent to my present day experience as the mom of a vaccine injured child.

I grabbed The Worst Hard Time by Timothy Egan when Nick was first diagnosed with autism because the title summed up perfectly how I was feeling at that time. Egan describes in incredible detail what life was like for families who lived in the Dustbowl during the Great Depression. Like today, there are jarring contrasts between the extraordinary wealth of a minority of robber baron industrialists and the tremendous suffering of so many ordinary families. I completely understood the utter helplessness these parents felt to relieve their children’s suffering because I was living that at the time with Nick who was incredibly sick. But what caught me by the throat and pulled me out of my own grief was reading about families that were so destitute they could only feed their children every fourth day, and by feed them I mean a bowl of watery soup. I was heartsick that Nick had been diagnosed with autism, but we did have food on the table and this gave me some much needed perspective. If this subject interests you, you might want to check out a new PBS documentary Dustbowl by Ken Burns which premiers November 18, 2012.

A year or so later I started to become a regular Age of Autism reader and I found Resistance by Agnes Humbert. Humbert was one of the original members of the French Resistance in Paris at the beginning of WWII. She helped to found the underground newspaper, ‘Resistance’, and was one the few Parisians to work covertly against the imminent domination by Hitler’s forces. She survived four years in a labor camp and her dignity and tenacity during these hellacious experiences gave me tremendous strength. As I was reading about Humbert discreetly leaving copies of ‘Resistance’ on train seats I was placing cards with vaccine ingredients on the windshields of cars in my Whole Foods parking lot. Humbert felt that fighting for the rights of Jews to live without persecution was worth risking her life. I would be willing to risk my life if meant saving another generation of children from the damage of over vaccination.

The strongest parallel I felt between Humbert’s experience and my own is about camaraderie. Humbert writes about the brutal conditions she was subjected to in the labor camps. At one point she becomes so sick and so hopeless she falls off the bench she is working at, in hysterics. One of her camp mates pulls her through with the support she needs to make it one more day. Here were my online Autism groups! How many times had I heard the call go out “we’ve got a mom down in Cincinnati? All hands on deck.” And the support would start rolling in; “I’ve been there…hang in there honey…better days are coming… you will get through this.” I have been part of both the giving and receiving of this incredible lifeline.

The third book, The Things They Carried by Tim O’Brien, also focuses on the tremendous friendships forged in gut wrenching situations. O’Brien writes about his tour of duty in Vietnam. He writes with incredible tenderness as he describes the men with whom he shared the trenches and the lengths they went to, to take care of each other. Many of these soldiers, like the autism moms I talk to daily, would never have known each other if they hadn’t been called up for duty. Facing the grit, despair and tedium of war together these soldiers, like my posse of Autism warrior moms, became closer to each other than to anyone else in their lives.

In each of these scenarios; the Great Depression, Hitler’s decimation of Europe’s Jews, and Vietnam, incredible suffering was created out of the greed and ignorance of those in power. Many people were killed or harmed unnecessarily. It all could have been prevented. I think it serves us well to remember that deaths of children were considered acceptable in the past if it suited a political or financial ‘greater good’. When I am talking with someone who has never considered the downsides of vaccination and I mention that many in power at the NIH and CDC have known for years that our ‘one size fits all’ vaccination program carries grave risks for certain populations of children, people are aghast. They say “people wouldn’t do such a thing.” Well they are and they have been for a long time.

You might be thinking that what I really need to do is take a step back from all of this serious stuff and grab a romance novel or a good detective mystery. I hear you. I have a regular ‘prescription’ to US Weekly which helps me to turn off my brain and luxuriate in which celebrity has screwed up her life each week. But these intense books that I mention above give us something so important. They help us place our current struggle into a historical context. We can derive strength from those who have suffered before us, but we can also get mobilized into action for change when we realize that this is a moment in time that will be reflected upon as well. What will your role have been? Will you have been a bystander or will you be remembered as someone who fought against the current climate which values pharmaceutical profits over children’s well-being? I do think of this as a war. It is a battle between loving common sense and ignorant greed. And I do think of you as my ‘comrades in arms’. Our weapons are knowledge and information. Our strength lies in our numbers and our power comes from the heart.

Tell me what you have read that has moved you, stirred your soul or changed your perspective?

Mama Mac (Who’s got your back)

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