Released Into Madness

Our child remains a prisoner of his own mind, held hostage by a severe mental illness, trapped in a world that limits his cognitive functions, and though processing, tormented by tactile and visual hallucinations as well as delusions that derail his former logical and rational thinking into a wasteland of perpetual self-shaming, fear, and paranoia. It’s been over 3 years since his diagnosis, and the torment continues to tear through his and our lives. At first break, we did everything right and got him the emergent services he needed - but the limited 10-day hold proved worthless with four days in a pod and only 6 of actual treatment. The hospital professionals insisted he was well enough to go home, and I pleaded, “He doesn’t even know me. He says I’m not his mother. You cannot let him out.”

They told me he had a right to be free, that it wasn’t a crime to detach from reality — he wasn’t a threat to himself or others. 15 minutes after his release, in the parking lot outside the hospital, I suggested to him we go home and enjoy a homemade meal. I opened the car door, and he said, Why would I go with you anywhere? I don’t know you. You are not my mother. He fled from me in slippers, a t-shirt and jeans. I lost him to the streets of a city we didn’t know. I spent hours searching for him, contacting law enforcement, and showing his picture everywhere. Night came, it was freezing temperatures, and his first angel sent a message by way of the local police: We’ve found your son. He says he is homeless, has no family, and his name is John Doe. He was certified that evening.

Another 10-day certification, and he refused meds and insisted nothing was wrong with him. He continues to deny me as his mother - sometimes he’d admit he knew me. There was nothing stable. He made no sense when speaking, and he was catatonic for two days and non-verbal for another two. The plan was for him to go home with me, but an hour before I went to the hospital to pick him up, the doctor called and said he refused to agree to the plan. They had put him in an Uber so he could live in a shelter in a larger city, an hour from where we had just moved. Horrified. I raced and scrambled to find where he was sent. Hours passed and at 11pm when it was clear he had never arrived at the Shelter, I called the state police and explained that the hospital let him in an Uber in a psychotic and unstable state. I provided photos again and again. They found him in a bathrobe, all his belongings gone and again, he denied who he was. He was certified to another hospital. Frightened, unwilling to stop my pursuit to save my son, I contacted a guardianship attorney that evening and proceeded with what I was told was “a pointless effort— no judge will grant this - it’s too soon, he’s not sick enough.” But another angel appeared - during his third stay in the larger hospital, doctors sided with me- they saw him gravely sick, not talking, not eating, and completely detached from reality. The three certifications back-to-back were unprecedented for the state and helped make a solid and fair case for guardianship to ensure he be treated before further tragedy.

You may think: Surely you’ve won as a result. Unfortunately, no. The persistent nature of the illness and Anasognosia were against us- and remain a threat to our son's life.

Court-ordered treatment only works so well, when only having average medicines available to address treatment-resistant Schizophrenia. Three years later, with over 11 hospital certs/stays, our son is now on court order and finally, 4 medicine types later, he is receiving Clozapine. The change is slow, the young man we knew remains a shadow to his illness, and we wait for the day when his eyes will sparkle again with panicked glares. We hope for the smiles and laughter to turn from cautious to enthusiastic. We pray that he remains in medicine and currently wait endlessly for a safe place for him to be discharged.

He’s been in the hospital for 4 months. He has not breathed fresh air or felt the sun in his face. There are no private residential treatment centers in our state so he is a victim more, waiting for a bed at a group home where he is promised to be able to start fresh with court ordered outpatient treatment - so we hold our breath, we keep our faith alive both in him and the state because we have no other choice. Our fate is locked by a system that has no state reciprocity with other states for residential care, a state without private residential options and to make matters worse: a state that is small and while good intentions may exist, the funding, space and system can’t serve our son sooner, so later is the only options we are offered.

We are fortunate to have maintained stamina, advocacy and the ability to shower relentless love toward our loved one but we are consumed with grief over the harrowing journey he still endures, filled with fear that even the best medicine may not save him because to date it is not available in the long-acting injection form. Our son stands with millions of others in the world, whose illnesses have become a lower priority to others - it’s time to front-line severe mental illness. When Mental Illness strikes, it can often decimate everything in its path. It starts slow, like a storm. Temperatures change - smiles twist, laughs perk with ironic twangs and uncomfortable smirks. The winds pick up as a season of manic twists, turns, and turbulent emotions rage. For some it may be different. The winds might slow, and form a massive, and dense fog. The blue comforting sky transforms into uncomfortable shades - and a new reality crawls into the brightness that once burned, and soon all is dark. Familiar glances, touches, and laughter turn into a foreign language, and from their isolation creeps in. This contradiction makes loved ones close to the storm question: what’s real, what’s not - and all the while, not even realizing the very one in question, is also questioning; what is real?

The madness leaves no loved one unscathed: doting parents, loyal siblings, and lifelong friends — before their very eyes, an unstoppable twister snakes through the in-between space and places. You and them, he and she, us and we. Friendships shatter, long loves split, dreams corrode, and careers implode.

No one is safe from the havoc and wretched hell of a severe mental illness.

Even the tightest families shred like tired ropes from constant tugs of war; you said, she said, he said - they said, we said. On and on, the storm obliterates. We pray. We cling. We hope for better days. Desperate and filled with despair. For all that which made us whole is gone. We are but a shell of who we once were. We are exhausted; ruined by the endless torment, inner struggle, and a chaotic mind's physical destruction of everything it once knew, loved, hoped, believed, and knew to be real and true. This is what it looks like to be struck by mental illness. There is no going back to the way things were. There is only one option: Radical Acceptance of what we are left with - and the call, to carry on!

Neurological brain diseases are complex, under-researched, underfunded, and too frequently misunderstood. But there is hope. There is a new current of thinking, a new group of people with lived experience and even their caregivers— all of them at the ready, lining up, fiercely unafraid to keep the conversation going, to call communities into action, first responders to fight with heart, not handcuffs, and hospitals to treat before tragedy. Too often, because of poorly written, interpreted, and inappropriately executed HIPAA policies, the mentally ill are pitted against caregivers, caregivers against clinicians - the result: communities of conflict.

Yet ironically, we generally agree: a better treatment protocol for the very sick, from the start, that doesn’t delay in treatment but also doesn’t rush a hospital stay! It’s time to end that, to change the conversation from people blaming a “broken system” to a conversation focused on developing a new system, engineered with different insights, inputs, and a radical acceptance of what hasn’t worked, so we may begin the radical evolution of behavioral healthcare. It’s time to stop the indecent treatment of the mentally ill by ignoring their brains while being attacked by mental illness.

Would we do this for those with diabetics needing insulin? No.

Do we do this when one’s heart arrests? No.

The idea that the most sick, suffering from a neurological condition called Anosognosia, need to be treated with dignity to a life of freedom and the streets is not treating before tragedy, it’s ignoring them and causing tragedy. We need to bring back tranquil, peaceful recovery settings that treat the acute needs of a person in the throes of psychosis but offer an oasis from the stressors of everyday life. We need to stop making our hospitals look like prisons.

We need to stop making our prisons hospitals for the severely sick. We need to expand our mental health diversion courts, create more synergies with hospitals and mental health courts, and undo the many contradictions of our current mental health laws of our states and the country at large.

Shatter the silence with me; bring quality, compassion, and decency back to mental health care with solutions that soothe, resources that recover, and tools that turn refractory illness responses into rights of recovery!

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