Tuesday, December 21, 2010

It's a Whole New World, Baby!

I've been reading the weirdest stuff lately. Not weird, really, just weird for me. POW accounts and memoirs by survivors of violent crimes, tales of child abuse and war, and other tragic stories that are typically far too painful for me to stomach.

In general, I figure the depths of human depravity are what they are and me having a head full of their horrors does nothing to alleviate anyone's suffering, so why all this reading? For months now, I've been reading my face off, immersed in this stuff. My husband was perplexed, asking my why in the world I had abandoned my usual fare in favor of studying (as Kurtz would say), "the horror, the horror."

Why? I don't exactly know, but as an avid armchair Freud, I can hazard a guess.

I'm trying to get my feet under me. I'm trying to regain a perspective that lets me live my life, this life that is the only one I have to live, where things are so unbearably fucking unfair.

Because things are unfair. Carter is mentally ill, and that's unfair. My older kids went to live with their dad, propelled by an anger so hot they hardly glance back at the mom, step-dad, and brothers they left behind, and that's unfair. We're crippled financially, and that's unfair. Our outrageously expensive health insurance denies some of the therapies that Carter urgently needs, and that's unfair. Our lives have narrowed because Carter's needs are emotionally overwhelming for Brian and me, and that's unfair.

No doubt about it; there is much that is unfair.

And nobody ever survived extraordinary circumstances* by wailing endlessly about unfairness. Immaculee Ilibagiza survived the Rwandan holocaust in 1993 by hiding in a tiny bathroom with several other women. They sat, crowded, completely still and silent, with barely enough food and water to sustain them, for weeks. She survived by praying constantly, not by ranting about the unfairness of it all.

I haven't quite shifted my perspective yet. Today, when I got a letter from our insurance company informing me that Carter has been denied for both occupational and physical therapies** (therapies that everyone on his treatment team agrees he needs very badly), I wanted to curl up under the bed and cry my face off.

Honestly, I don't ever want to be too accepting. If some of us don't rail against the unfairness of it all, how will the insurance companies know that they're acting like assholes?

There is also this rebellious streak in me. Early on, when we were flailing in the dark, trying and mostly failing to find help for our troubled little boy, I heard over and over, "You have to make the best of it!" There are dozens of versions of that, of course: be grateful for what you have, count your blessings, at least you're not dealing with (fill in the blank), on and on. 

I don't believe that any of us has to do that. I'm trying to find acceptance now because I'm able to do that, and I'm only able to do that because I grieved and raged and struggled. I felt all those painful feelings and I will continue to feel them. Keeping a stiff upper lip? The only purpose of that is making other people feel comfortable. 

No, I have no use for false bravado. I'm looking for something different; something deep and genuine. Carter is stable now, and in this pause, this break in the storm, I need to heal the parts of me that have been wounded in the past 8 1/2 years. 

Be patient with me. It turns out that building a new world view is a time consuming endeavor! 

*I'm not comparing anything we've experienced to the horrors endured by POWs, violent crime victims, or any of the other things I've read about lately except in the most metaphorical way. Some things in life can only be understood by those who have experienced them, and I would never presume to understand those things through which I have not lived.

**Our insurance company covers OT and PT if the qualifying diagnosis is (or is caused by) illness, injury, or disease. Since Carter's injury (probable perinatal stroke) is not verifiable, he doesn't qualify. Our insurance doesn't cover developmental delay at all.

Adrienne blogs about life and family at No Points for Style.


  1. Hi, Adrienne,
    Lovely to see you here. My main comment is over on your home blog, it just felt more intimate there. I might have gushed a little. Love to you.

  2. I can so relate to much of what you wrote. Life certainly ain't fair ... not one bit. I'm usually okay with that except when I'm around my siblings and their kids -- then I have to fight the resentment and the "why me" and "not them" that rears its ugly head. Thanks for sharing.

  3. What state are you in? Some states have legislation that mandates that insurances cover OT, ST, and/or PT due to autism regardless of their policies.

  4. So sorry to hear you are going through this. And the insurance battle doesn't help. I wish I knew of a solution. Do you have an insurance agent? Our son was denied coverage altogether as an infant, and we were able to find something through a good agent. Sending you strength...