ANOSOGNOSIA -- #1 ENEMY by GG Burns
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.
The more I try to help my son, the more determined he is to refuse treatment that would restore his sanity. He sadistically and verbally abuses me and there is simply no way to have a conversation or to even meet in person. He calls and texts with extreme threats to end my life. I, in turn, go through extraordinary measures to have him committed and the state hospital kicks him out in less than 3 days. In this crazy “NO-CARE” world we live in, it is all about his rights to refuse. I lay in bed at night wondering when will this ticking time bomb finally blow? I ask myself how many people will blame me for his death or blame him for mine?
My son is constantly angry about everything that he has not been able to do in his short life.
He blames his parents!
He blames the banks!
He blames doctors who diagnosed him years ago!
He blames the government!
He blames the hundreds of mental health providers who have "attempted" to provide him some small level of care in spite of the fact he doesn't believe he has an illness.
In my mind, my son's "anosognosia" (lack of awareness to ones symptoms) will always be the #1 enemy. We have gone to war with this debilitating symptom, making it a household name in our attempts to lobby for state/national parity and system changes that would "require" someone like my son to agree to treatment in spite of the fact they don't believe they are ill.
Until our civil liberty laws change, my son’s brain will continue to deteriorate! It is a costly, unjust and inhumane way to die! Brain disease and cancer are both treatable. Some recover, some don't. The difference is that patients with cancer usually realize they have an illness.
You ask how do I find joy? My faith and earth angels (friends who understand) help me realize I must take care of myself in order to be there for my son -- even from a distance. I find comfort in painting, gardening and supporting others. I fight with ever determined ounce of life I have for legal policy changes that might breathe a longer life into my son and others like him before it is too late. I rest when I can. I pray. I weep.
I am a Mother of a gifted young man who is surviving a serious brain disease called schizophrenia in a world that allows him to die a slow painful death -- untreated.