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A Parent's Story
The worst part of schizophrenia is the cyclic events that interrupt my daughter's life. In turn, those events interrupt my life. It's like going to a movie and watching it repeatedly. Here's the plot: no beds available for the dually diagnosed. Go to the short term locked unit. Get on meds,a different regime each time. Calm the voices in her head, better able to concentrate then, put her out on the street with no follow up care, and a written prescription she needs to fill to take meds. Not taking meds and is homeless. She starts drinking, smoking meth and pot. Her behavior gets her noticed and the police get called. She resists arrest and goes to jail. She takes meds while in jail, is restored to sanity, and serves her sentence (refuses Probation). Then, out to the streets again with an appointment 2-3 weeks later, with a written prescription and doesn't fill it. Smoking meth and pot, drinking alcohol. Usually returns to jail within 3-6 months.
The credits roll:
State of CA under Governor Ronald Reagan and all the remaining States under President Ronald Reagan: responsible for closing mental health hospitals, releasing thousands, then millions of very sick individuals into the street, incapable of working, or maintaining a household, instantly becoming homeless.
City of Santa Barbara: always making the homeless move along, even when they are sleeping. Message: we don't want you here--even though she's been here since 1994 at age 3, attended school, graduated from San Marcos, and considers it home.
County and City officials: pulling their hair out in frustration. But they write new grants to help the homeless and use the $$ to support administrative activities to study issues, when the ultimate solution for homelessness is housing.
NIMBYs: shoot down every low income housing project proposed by City Housing Authority. Giving someone a home is the ONLY cure for homelessness.
City Housing Authority: pulling out their hair, for the same reasons as above.
City Council: wants a final solution, but $$ is a problem. Yawn!
County of Santa Barbara: released her from conservatorship, knowing her history repeats itself, catching her in the revolving door: streets, hospital or jail, back to the streets without coordination or follow up. BeWell invested many thousands of dollars on her for 5 years of care in an IMD. Their investment was at least a break from drug use while her brain finished its development. Without follow up or a source of enforcement about taking meds, she won't take them because her anosognosia always pushes her to believe she is well. With my tutelage, since I am a nurse, she was taught from an early age that "you don't need medication unless you're sick", which only reinforces what her anosognosia informs her about her decision to go medication free.
Her parents, whose educations as a nurse and Criminal Defense attorney failed them. When their daughter had a severe psychotic break at 17, it was recommended she be hospitalized, but we said no. We didn't understand that we would lose control of her healthcare at 18. The onset of psychosis often occurs during late adolescence, and the longer her psychosis went untreated the less chance of recovery. We gave into our fears that she'd be labeled, decreasing her insurability, and no chances for medical school or her career goal, to be a neonatologist. But only now do we understand what a watershed moment that was and how large of a loss that opportunity for a possible cure was.
February 5, 2021
Recently I spent a day with my daughter after she was released from jail. In our discussions, I asked her about being back on meds. Here are the highlights of what she said:
"Why should I take meds? First, I'm not sick so I shouldn't have to take their poisons (anosognosia). Each time I go see a doctor, each has their favorite drugs so I've tried them all and they don't work except to give me side effects. Some of them make me gain tons of weight, pee blood, and they don't work. I don't see the same doc, because they're always leaving BeWell, and I have to start all over. I've had every diagnosis in the DSM IV because they do their own assessments and come up with different opinions. Psychiatry is a bunch of hocus-pocus, and I don't want to be their Guinea pig anymore."
"Nothing in my life has a chance of changing until I have my own place. Every day I work to get food after my money runs out, and figure out where to sleep so I don't get awakened by some cop who says "Move along!" Sometimes I'm so sleep deprived, I can hardly stay awake, or walk somewhere to get food. How would the cops and city and county officials like being awakened every night 3-4 times a night? They say they care, but what have they done for me? Nothing. Especially since they stopped feeding people, and prevented others from feeding people.
They just pass rules about illegal camping. Just where am I supposed to go? Give me a home and I'll stay there! This city is where I grew up, and I don't want to go anywhere else. I don't know anywhere else!"
"Going to jail is a pain, but at least they feed me (it is so disgusting!). It is dry and warm and I can shower, sleep in a bed. They won't let me use my ATM card to put money on my books to get to the canteen to get other foods. (That should be a crime right there!) We're locked up and have to eat what they serve. We are at the mercy of the guards, some who are intentionally and unnecessarily mean. There's no way to complain about how they treat us, no complaint forms available. If someone complains, the guards are even meaner than before. And they throw out complaints when someone does fill out a form."
"They steal my belongings and money when I'm there (jail). Or they just leave it all where I was when they arrested me. So there goes my ID, my ATM card, and whatever money I had. When I get out, I can't access my bank account to get a new ATM card because I don't have an ID. And I can't get an ID because I don't have $25 to pay for it. And because I don't have my birth certificate, the DMV won't give me an ID. And the bank and DMV want an address to mail them to me! What am I supposed to say then? They won't send it to general delivery at the post office, either, fearing they'll get stolen. And I can't get a PO box because I have no ID and no money. Once when I was in jail, they closed my P0 Box for lack of payment, even though I had money in my account to pay it. If I try to make a complaint about getting my stuff back after I get out of jail, who is going to be believed--me or some cop? How can I prove how much money I have, or that they stole my stuff (like when they stole my Coach shoes and my UGG boots)? I just hate cops!"
"Each time I go to a sober living house, they are mad if I can't sleep and stay up, or make noise. The rules are different every day, depending on which staff you're talking to. Addicts trying to fix addicts--what a joke!"
"When I meet new mental health "professionals" I get treated like I'm an idiot or a child who needs a mother. I have a mother, thank-you! This most recent visit included a guy who talked down to me. I may be bat-shit crazy, but I'm not STUPID!"
February 19, 2021
She's in jail again. This time, she tried stealing a car--a felony. She still has the charges from her CVS adventure--another felony-- when she was brandishing a knife at police who shot her 4 times with bean bags back in spring of 2020--yeah, it made the news, and the Independent. Photos on Channel 3 News' coverage depict an officer, back to the camera, holding her backpack. (She still doesn't have her backpack back from SBPD, and claims it contains $800.
She says that money won't be there when she gets it back! I tend to believe her because she doesn't lie about things like that and addicts keep track of their supply and money to obtain more.)
Her third charge is possession of meth and paraphernalia. I'm told she could go to prison with this trio! Yeah, that'll help (sarcasm dripping) making her more mentally ill, more institutionalized, loss of more autonomy eventually robbing her of any chance to live independently in our community.
I know, however, how deadly that CVS event might have been. It was as little as 10 years ago, the Santa Barbara Police shot and killed a schizophrenic young man, wielding a table knife on the Westside. He was across the street from the officers, yet they felt their lives were mortally threatened. Like hell, but it was a justifiable shoot. I bet his family doesn't think so. Thanks to the greater SB community, who rose up in protest, the use of fatal force is more judiciously utilized.
Like my daughter, he probably was paranoid, believing someone, real or imagined, was intent on harming him. Like my daughter, he was a patient at ADMHS and he went off his meds, getting no follow up.
Once I saw a knife in my daughter's backpack. In response to my questions, my daughter said, "Mom, it's not the safest place to be by yourself, homeless on the streets, especially for a woman. I carry a knife for my own protection. It's why so many people who live in the streets have dogs."
I'll be in court next week during her appearance on February 22nd in front of the same judge who originally sent her to Patton State Forensic Hospital in 2014. After a six months stay, she was the daughter I remembered, the one I raised. The one who could make me laugh wholeheartedly, loved family fully and unselfishly, was very logical in her thinking while apologetic about worrying me, always concerned about others. I pray for a repeat outcome on the 22nd.
How does this affect me? My sense of humor turns very dark and sarcasm is the theme of thoughts and words. I try to not think about it, but that's usually only possible when I am at work or asleep. I don't work 24/7, nor do I want to. I sleep more than usual. As I write this, my mouth is dry, my eyes filled with not yet shed tears, my shoulders and neck are killing me where I stash all my stress, my fears for her are a ball heavy in the bottom of my stomach, but I'm hungry and nauseous. My heart is broken while feeling rubbed raw like road rash. That's ironic because we've been here at this intersection so many times since she was 17. These ensuing years, repeated cycles of the revolving door, have caused my heart a deepening abrasion that is as deep as any 3rd degree burn. She'll be 30 this September.
You'd think I would have better coping skills by now, just through practice, but how does any parent ever forget about their suffering, cancerous child? I almost wish she had cancer instead of schizophrenia. I could talk about it more freely. Cancer research goes on daily, often with life-changing results and cures. Social norms surround cancer fundraising, walks for a cure, and supportive services for families.
None of these are around schizophrenia for affected individuals and families. When I mention she lives with mental illness, I often get weird looks which seem to ask me what I did wrong as her parent?
"Please, Lord, help us!," I pray every moment of my days.