Monday, December 12, 2016

I wrote this in September 2016, as a response to a friend's blog post. It is a harsh reflection into my soul, after experiencing Kentucky’s mental health system failures for the 20th time in less than 10 years.
I echo every word you wrote, Dede. It seems that I have more friends of children who have suffered with a brain disease and are now free, (passed), than I do with those who have figured out a way to recover. 
My son has "suffered" for most of his life. Nothing was easy for him (or us — his family), even though he was bright and full of life and joy until his brain illness took over. We tried everything. Twelve long years of IEP special accommodations in the school system; special diets, special vacations; (with as little stimuli as possible); special cocktails of meds; (some worked, some made him worse while others were like a miracle cure). For a while, in his late teens, the future looked good. He was adjusting and transforming into a responsible young man with enormous dreams.
Yet, as my son grew older, his desire to be normal, to be free of the labels and the "special world" we'd built for him became the enemy. He broke away from his life of special accommodations like an animal in chains. Once he was free of his chemical straight jacket, he refused to return. He was higher than a man on cocaine. The mania and impulsive reckless life was what he wanted. In his world, he was king! He could now do anything and there were no rules or consequences. And even when his recklessness and abandonment met handcuffs, locked doors and bars, he didn't seem to notice because it forced him to sink deeper into a total psychotic break from reality. 
Overtime, as my son's illness rapidly progressed, my own health declined. For almost 11 years I have battled PTSD, anxiety, and painful autoimmune diseases. My son is trapped in a place that is worse than death -- the carousel of insanity, the revolving door that leads nowhere. It just keeps him from killing someone and then spits him back out to the streets ... untreated! 
We’d never treat a human being with Alzheimer’s this way, but yet, the USA abandons the sickest people in their country everyday to live in homeless shelters. The senseless system of “self-directed care” --  a recovery bullshit model developed for addicts not for people with serious brain damage -- forces people who are at their worst to hate their own parents! It keeps us from communicating with their medical providers even when they are hospitalized! Their medical providers are trained to tell our sons/daughters that we were the ones who made them sick! It’s worse than death for many of us. 
Read the rest of my post here:

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