The Ugly Side of Truth

by Catherine J Rippee-Hanson

We have but a few family members left - just my twin sister, and our elderly mother, and myself. We are the only ones left trying to care for my only brother, Mark, or to find him help as he lives homeless, on the streets of his hometown in Solano County, California. He is blind, disabled, with schizophrenia and anosognosia - and has been critically injured several times in the last 15 years.

For varied reasons - none of us can drive. I am homebound and confined to a wheelchair, so my twin sister has become the 'curbside caregiver,' going out into the streets to remind Mark that we still love him, that we remember who he is, and to bring him things he needs. It is my role to organize and facilitate our awareness efforts, as well as work with our Facebook community and SMI/SBD advocates seeking to overcome the barriers to Mark's treatment, housing, and care - and to keep track of Mark and his needs. The things that our local officials, the Public Guardian's office, and Adult Protective Services in Solano County keep denying he needs. This is our version of "It takes a village."

I monitor the posts or messages we receive about Mark on my laptop every day without fail from the minute I wake up and grab a cup of coffee - till 2 or 3 a.m. each morning when I am finally able to sleep. Whenever possible, I coordinate and direct others to where Mark is and what his needs are in the moment because I cannot go to him. Though remaining out of our public journey, the eldest adult children of each of us have also steadfastly helped us in our searches, offering us the support we so desperately need. They drive around town looking for Mark in front of stores or behind dumpsters, taking my sister along, who brings him essentials and checks on him.

As often as possible, we send or take him items necessary for his survival. Often, the items have been donated by our group's members or from the community.

• Clothes that will disappear before he can change or even get up off the ground as he is so battered and broken - not just metaphorically - but bone-shattering, brain diseased, broken.

• Food, but only what will not spoil and that he can carry or add to the cart of garbage he now uses to lean on when he walks, since he was hit by two vehicles in addition to falling blindly in the street and breaking his hip last year.

• Bottled water that he often will not drink, but instead pour over himself to simulate a shower - exposing himself publicly without regard or even realizing that others can see him. So desperate is he to shower that at times he has used a gallon of milk or bleach.

• Sleeping bags, blankets, hand warmers, and umbrellas to protect him from severe weather which often end up stolen from him.

By providing him these items so that he does not die - we hinder long-term protection available under current law for LPS conservatorship, AOT, or involuntary conservatorship in California. It is just part of this conundrum. A third party's assistance in providing those items – disqualifies him for being considered "gravely disabled." If we abandoned him completely and did not have good Samaritans in our community helping him - he would certainly die or end up near death as a result.

In California, this is the current standard for involuntary commitment or treatment, housing, and care when you have a serious mental illness. The only thing that matters is whether the individual is a 'harm to himself,' even if self-neglect and the obvious risks of living blind on the streets with SMI/SBD ignored. He must state that he intends to kill himself or try. Then there is "harm to others," which could land him in jail rather than supervised, supportive housing and receiving proper treatment. In addition, a person may be considered 'gravely disabled'- a legal term and designation which has little significance or impact in the real world - defined as being unable to provide food, shelter, or clothing. This is an affront to us, to Mark and to our community who care enough to provide him with the bare necessities. While we are both criticized for not doing enough when we do not have any legal rights, and Mark has no awareness or insight of his own brain illness, we are still by our actions on his behalf - hindering real assistance by not allowing him to die alone on the street. This would be checkmate in chess. Game over. It is like a stalemate in the real world... impossible. Our mental health system does not have cracks - it has chasms and canyons blocking access to treatment for the most vulnerable and sickest among us. The diseased brain is discriminated against and ignored more than any other major organ in the body.

Community members and members of our social media group are watching over Mark, and they send us messages every day about how he is doing and what he may need. I can only see Mark through pictures and videos that our members share with us or that my daughter or niece take with reports of his well-being - ah, what an ironic choice of words. He is anything but well. I stop breathing for a moment when I see every photograph, every report, and every message. Every word I write about him makes me cry. With every stroke of my digital pen as I create graphics to raise awareness about serious mental illness... It is as if Mark is there beside me, yet so out of reach.

The situation is no better for my twin sister, as she blocks the rude remarks people yell at her when she embraces our brother - until she gets home. The truth is humans can be unpleasant creatures. Although we have no legal right to his residence, some think his illness, and everything associated with it should at least be under our control. We did not choose the things we have endured for over three decades, just as Mark did not choose the symptoms he has.

Through our efforts to ask our community to care about Mark, we have had to ask ourselves...do we seek empathy? What about compassion? What about understanding? Even though we have different perspectives at times, we choose to focus mostly on who we know Mark to be and what he could be if he received treatment. To protect our own reactions to the horrors and humiliations Mark and our family have endured, we omit much of the ugly side of his life. His truth. We set out to collect hearts and minds, but that was simply not enough. In the past, we have tried to tell Mark's story sensitively, emphasizing his struggle to hold on to the last vestiges of his true self while fighting severe mental illness and living in the chaos of psychosis and homelessness.

Truth has an ugly side as well as its glory and purity. Things no one wants to see. Things no one wants to hear. Things that, if discussed, will put people off to the point where they will not care what happens to him. Things we have seen and experienced for three decades. The objectionable, the taboo, the things others abhor - appalling, disgusting, even obscene, repugnant, ugly side of the truth of untreated severe mental illness.

Mark may not believe someone to be who they claim to be...like when he said our mother was not his mother and threatened to kill her with the ax he kept by the door of his old apartment. It kills me that he has a fixed delusion that my son is no longer his nephew who worked for him as a caregiver for years, but instead the police had taken over his body and was possessing him. He has forced people out of his life because of the paranoid delusions that have engulfed, destroyed, and irreparably damaged the relationships with those who for years cared for him. He has threatened in anger to kill me numerous times. While incarcerated and held on suicide watch in a cell with a pay phone, he called me up to fifty times in one day, calling me filthy, inappropriate names - refusing to say my name but referring to me as "cunt." He blamed me after he was arrested when I called the mental health crisis center because he was attempting suicide by purposefully walking into traffic. The police came and arrested Mark instead of taking him in for a mental health crisis and put on a 51/50 hold.

Everyone in our immediate family have been subjected to rages, rants, threats, and verbal abuse. Mark has physically attacked us and hit us, and he has lashed out at times using his cane without regard for what he struck. He was sometimes so delusional and paranoid that we feared he would stab one of us with a knife he carried. He once chased my sister around her house with a stun gun while she was holding a crying baby in her arms. My late husband was a friend to Mark, throughout everything, but he threatened to plant drugs in our home and then call the FBI to arrest him and make him lose his job. He gave police statements that were not entirely true, which led to the arrest of other family members. The delusions have led him to threaten to "bomb" our homes. He has also threatened to pay someone to have our houses burned down.

Unseemly. He was caught on camera defecating in front of the county building during a storm. The county building security officer later yelled at my sister and angrily ordered her to do something! The man said he was sick of dealing with Mark and that he wanted him to leave the area, which Mark refused to do because of a fixed delusion of having to stay there, where he has haphazardly, blindly navigated for the past 15 years.

Another day, as my sister desperately tried to hide what she could using a coat she grabbed, trying to keep the children from seeing him - he stripped to his underwear in front of a busy grocery store and showered with bottled water in front of many families. On one occasion my sister was having a conversation with him on the street when he pulled out a plastic bag, put it down the back of his pants, and defecated in the bag...asking her for tissues like it was nothing. Organizing his meager belongings, more than once my sister has unknowingly reached into a bag of feces. Her mortification in the experience devastating her each time.

The danger. Fire in a trailer. Demolishing a studio apartment built just for him because he heard voices in the walls. A fire at his last residence, and later a fire behind a dumpster to stay warm. He was banned from a shelter for starting a fire years ago. Over the years, he would throw lit matches at us without warning. Please tell me again how we can control what he does and how we can control him. How is he supposed to get treatment for his no-fault brain illness? I would like to know how we could ever match a team of psychiatric professionals or mental health professionals in a supportive environment. How do we care for him and ensure our safety and the safety of all our other loved ones?

We are completely aware of the ugly side of serious mental illness. Certainly, it exists. For 16 years, Mark has become part of Vacaville's landscape, so it is clearly visible from all directions. He is no longer self-aware. As well as not understanding his own mental illness/brain disorder, he also does not realize that others can see him - taking showers in public and changing clothes while others are watching. A disfigured, angry, and visibly agitated man waving his arms in wild repetitive motions in response to the voices. Cars pass by with some shouting obscenities - while my twin sister tries with all her heart to ignore the insults directed at her and our brother. The brunt of embarrassment and sometimes mortification falls on her. Those curbside visits are not all hugs and kisses.

He has untreated. serious mental illness and by the symptoms of his illness and the resulting behaviors that others find offensive, his soul and true self have been vitiated. There is a limit to what he can be; he exists, but not through potential. It is not his choice. For years, he has been treated with contempt and obloquy. His future can only be glimpsed through a door to nothingness with the veil of hopelessness and confusion that hanging over him - wears him and whittles him down to the very least he can be.

As with many other families like ours, we have grown thick skin when it comes to Mark and how others see him. In our world, what others think has no place in clouding our judgment of what he needs. Our thick skin simply means that we are not easily hurt by criticism, and instead stoically ignore castigation if we are to meet his needs. All family members will be affected by a loved one with a severe mental illness. We cannot control conflict, just as we cannot control Mark's symptoms, sometimes referred to as his behaviors - a belief which is an utter distraction from the truth of his brain illness. Conflict consumes our lives, and we only want it to end. But the worst ending awaits families like ours. Mark needs shelter, treatment, and care. If he does not receive proper treatment, his quality of life and survival will never be as good as they could be. He has been untreated for more than three decades.

No one can deny the humiliating, undignified way our brother lives on the streets - blind, limping, and barely domesticated with bursts of lucidity. Only surviving by the sporadic kindness from members of his community who are familiar with his story. A man physically disabled, dysfunctional, depressed and living in despair - he is the 'person who is homeless' in America without access to treatment for a brain disease, and avoided at all costs by most. Some people who see the ugly side of his illness may only feel disgust and suggest taking him off the street, but they do not say where. In some cases, they explicitly say 'How' they would remove him. However, there are no psychiatric beds available. There are no mental hospitals. There are few supervised group homes. California's laws as they exist do not benefit people with severe mental illness, their families, or the community.

Why do families like ours have to fight every day to change protections under the laws - begging for treatment and care for years and years? In the wake of Covid, why must we discuss mental health or mental wellness, but not schizophrenia, bipolar, major depressive, schizoaffective disorder, or psychosis? How well do most people understand the symptoms of delusions, psychosis, and hallucinations? Why do we treat those with serious mental illness in this way in our country? We ask ourselves these questions and others ask us. We have seen our brother deteriorate in the harsh environment on the streets like a feral animal, completely unaware of his own actions, yet we can still forgive him knowing what we know. It is still a cruel and tricky situation when all roads lead nowhere.

His illness, his choices, and his life form a gnarly, Gordian knot of enigma. For almost sixteen years now, he has been homeless, and we have faced the dilemma of trying to meet his basic needs while pursuing the outcome we all desire - getting him out of homelessness and into treatment. We cannot kidnap him and take him to our home and tie him up or lock him in the attic or basement, so that the public will not have to see the embarrassing, mortifying or angry things he does. Having empathy and caring about him is not what will save him. We can no longer ignore that he is devolving and deteriorating right in front of everyone. Does he need to be taken off the streets? Certainly. My brother is dying right before our eyes. He is dying publicly, right before our eyes. It is hard to imagine anyone wanting to get our untreated, severely mentally ill brother off the streets more than we do, and it pains us in ways that are unimaginable to see him suffer like this. However, the law has never been on our side of the truth. Until they are... the situation will remain ugly.

#JusticeForMark

#eyeswideopen

#noonecaresfilm

#TwistedSistersAdvocacyActivismforSeriousBrainDisorders