Two weeks ago, Monday, February 27, was the fifth anniversary of my mother’s passing. It’s a bit surreal, really. It doesn’t feel like five years. It feels more like two. The first year, after she passed, I was definitely just in “survival mode.” I somehow managed to live in the same house I shared with my mom a year and a half all alone. The silence, with my mom being gone, especially at night, gave way to the cacophony of my mind. I learned relatively quickly I was suffering from PTSD.
Since, my emotional and psychological well-being have improved every year, but in some ways, the anger is more palatable. I’m angry my mom and family had to suffer for so long and how we are still suffering. My sister and I miss our mom tremendously. My mom was only 66 years old when she passed. I was only 42 years old. My mom was extremely proud of everything I accomplished in my educational and professional life. But she still never really got to see the person who I became. After all, I couldn’t be fully revealing about my thoughts and opinions and different aspects of my life. I didn’t want to cause her undue stress. I definitely didn’t want something I said or was doing to be integrated into her psychosis and become a source of pain and conflict for her or me or us.
One of these days, maybe I’ll write more about my path of healing (And through a fucking pandemic even!). For now, I felt what would be best for recognizing the fifth year was to make a video tribute of my mama. Even more than what I was able to show in my documentary film, I think the video shows just how vivacious, eloquent and radiant she was. And despite how crippling her severe mental illness was, her personality traits and love for her family remained. I wish I could have valued that and realized that more at the time. We love and miss you, mom!
I am hardly posting on my blog, for different reasons. One, work keeps me plenty busy. But I, also, am having a hard time balancing my advocacy, work and personal hobbies. That said, I will be sharing some news about a recent public event I participated in in Modesto, CA. It was the first time my film, “Benevolent Neglect”, was shown in a theatre!
With this post, I’d like to share some important personal news. After an intense amount of training this past year, I was able to finally receive my Black Belt in Aikido. I started training 14 years ago, around the time I first started trying to get help and treatment for my mom. Needless to say, dealing with my mom’s longterm medical crisis and housing insecurity derailed and delayed my training. I started training regularly again in 2019, but then the Pandemic hit! Well, I finally persevered and I know my mom would be very proud of me!
Here’s a video I made of my personal journey in Aikido. I incorporate the personal journey with my mom a little bit.
I’m doing what advocacy I can still, though it is very slow moving. Most recently, I contacted a couple of California State Representatives to let them know I’m available to provide testimony for legislation related to treating people with severe mental illness (SMI). Improving access to treatment and care for people with SMI is getting more attention these days, due to the homeless crisis here in CA. However, as was the case when my mom was alive and we’d try to get her help, politicians and their aides are showing little interest in helping or listening to me. One of the aides of State Representative Buffy Wicks (District 15) actually asked me what my credentials were, when talking to them on the phone! As a political scientist, that perplexed me. As a citizen and tax payer, that disgusted me. Politicians need to be more responsive to their constituents, regardless of status.
I’m “playing the game” for now. But I’m not above harassing them to get a meeting. Below is a copy of a letter I recently sent to Representative Miguel Santiago (District 53), as an example.
Dear Representative Santiago,
I am writing to you because I would like to give testimony for bills and proposals related to the treatment of people with severe mental illness (SMI). I understand that there is currently a bill, AB 1340, that you are sponsoring that is scheduled to be discussed in January. The bill, as I understand it, would amend/modify “Grave Disability” criteria that is a part of the 5150/LPS process. I am highly interested in providing testimony for that proposal, given that I have unique experience and invaluable knowledge in dealing with the 5150/LPS process.
Professionally, I am a community college teacher and a Political Scientist. I have been teaching full-time at City College of San Francisco since 2005. I am, also, an advocate for people with SMI and a former caregiver of a family member with a SMI. My mother, a second generation Mexican-American, began exhibiting signs of a serious mental illness around 2002. I started to play a direct role in trying to get her help and treatment in 2007. By then, as a result of no treatment, she was having hallucinations and not taking care of her medical/physical needs, particularly her diabetes. Despite my family’s best efforts, my mother would spend the last 1/3rd of her life with an untreated SMI. In my experience with the mental healthcare system, as my mom’s advocate and caregiver, I largely blame the 5150/LPS process for her needless suffering and premature death.
I found out relatively quickly how difficult it was to get help for my mother, when I began advocating for her in 2007. Though my mother would be 5150ed various times, between 2007-2009, I was told by representatives in both San Francisco County’s and Fresno County’s Behavioral Health Department that it would be easier for them to take her in and treat her if she were homeless! “Really?!”, I thought. “How unconscionable!” I had to get both counties involved, since I was living in San Francisco and my mom was primarily in Fresno, at the time.
Starting in 2010, the unimaginable would happen. My mom would end up homeless, living in a car, due to multiple evictions from apartments. At times, when we could, my sister and I would try to have her 5150ed, out of desperation. She’d show up at our houses exhausted and sick from lack of sleep and rest, and failing to treat her diabetes. The police would show up and, each time, refuse to 5150 her. Though homeless and obviously ill, they would judge her to not be “gravely disabled.” They would essentially tell us, “She has to be lying naked in urine and feces on a railroad track” for her to meet “gravely disabled” criteria. In these experiences and more, what became clear to me is that her living in a car was considered “adequate shelter.” My mom barely having any clothes to wear, even in Winter, was still viewed as “adequate clothing.” Though she was diabetic, eating primarily high fat and high carb food was viewed as her being able to “adequately feed herself.” My mom having an official diagnosis of schizoaffective disorder did not matter to them. Each time, they would conclude she was “competent” and able to make decisions for herself.
To me and my family, this was an outright neglect of duty by these police officers. Eventually, in 2018, she would develop stage 4 kidney failure. A Modesto police officer took this institutionalized neglect and, really, cruelty, to a new level when he refused to 5150 my mother in January of 2018, when she stopped taking her medications for various serious physical conditions. My mom was in the midst of an acute psychotic episode and stopped taking her medications because “God told her they were poison.” Going on day four, she was unable to eat or drink anything. She did not have an appetite and would puke up anything she tried to drink. She was demonstrating organ failure. Despite this, the police officer determined she did not meet 5150 criteria. My arguments to the contrary and pleas for help fell on deaf ears. The police officer, like many before him, ruled my mom was “competent” and able to decide for herself if she wanted to go to the hospital. My mom could have died at the house. The police were willing to let her die. Fortunately, however, from the urging of other family members, my mom would agree to go to a hospital later in the day and be medically/physically stabilized.
All of this is to say nothing of other times the 5150 process and various authority figures and officials failed my mother. I detail this some in a documentary film I made in 2020 titled “Benevolent Neglect.” It is available for viewing on YouTube. (A film trailer is available for viewing here: https://youtu.be/ta08Lo3ULqo ) With this letter, I have focused on the problems my family has faced with how “Grave Disability” is interpreted and applied. It is too NARROW. Dr. Julea McGhee, who is the emergency room psychiatrist in my film, told me this. She said the problem is insurance companies determine what constitutes “Grave Disability” and that they intentionally define it narrowly. In her opinion, many more people should fit the criteria for “Grave Disability” than actually do. I understand that AB 1340 would amend “Grave Disability” to include “medical self-neglect.” I strongly support including “medical self-neglect,” as my mother’s frequent hospitalizations and deteriorating health were undoubtedly the result of her severe mental illness. As I think I demonstrated, I can speak on this with considerable knowledge and authority. I have much more I could say and contribute in this discussion and debate. Thank you.
I was lucky enough to have my film, Benevolent Neglect, reviewed by national best selling author and mental health advocate, Pete Earley. Pete knew my family’s story somewhat, from when my mom was living with me in Modesto. As a way to raise awareness about our plight and to possibly have people at the ready to help me shame local government to help my mom, I had asked Pete to run a couple of my blog posts on his blog. He obliged.
I was hoping Pete would like my film. I wasn’t expecting him to give it such a glowing review, though. I’m so happy he did. Mom would be proud of me, for sure. Here are some excerpts:
“A Modesto police officer refuses to involuntary commit Josie so she can go to the hospital even though she is clearly a danger to herself. Why? Because she is able to tell him what day and month it is, along with the name of her street. A hospital supervisor ignores Estrada’s pleas even though his mother has nearly died because voices are telling her not to take her diabetes medication. Why? Because Josie wants to be discharged and the supervisor doesn’t want responsibility for her. A California Department of Mental Health employee rebuffs Estrada when he says his mom has been kicked out of so many apartments, she now is homeless. Why? Because she is living in her car and therefore has a roof over her head.”
“All of us rejoice when we read accounts about individuals, such as my son Kevin, who get treatment and the tools needed to control the symptoms of their illnesses and do well in life. I believe most Americans with mental illnesses can but Estrada’s film reminds us that getting that help often proves impossible.”
Even when my mom was homeless for close to two years, living in a car, I always made time to see and visit with her on Mother’s Day. She always wanted to go to Marie Callenders for the occasion. This past weekend, like I’ve done the two previously, I went to the cemetery to give my mom flowers. I made it a point to do some filming, too. What I’m sharing with you, below, is the closing scene to the introduction to the short film. Of course, there will be narrating and music added.
There are two days left for the fundraiser. Though I’ve made my goal, I am still fundraising to cover the costs of some unanticipated things like buying historical film footage and hiring someone to do some graphics animation. I’ll be lucky to break even, when all is said and done. So, please share the campaign link to others who you think might be willing to support my project.
I haven’t been posting because I’m working on a video project, while on my sabbatical from teaching. For my followers and visitors, yes, this project is a new phase in my advocacy work for my family. It’s a short documentary on my family’s experience with the mental healthcare system.
As those things go, costs accrue, related to production and planning. They’re relatively low, since I’m doing this project as an “amateur,” someone who has no formal training and experience with filmmaking. It’s something I feel compelled to do, though, and feel pretty good about the prospects of completing something valuable and important. If you could take the time to considering donating to my fundraising campaign for the film and sharing it with people you know, I’d greatly appreciate it. Here’s the link to the Kickstarter campaign (click on “campaign”).
Below is a snippet from the campaign website, followed by a short video segment of an interview I’ve already done with a family friend. Thank you for your consideration and help!
“This short documentary is my latest attempt at advocating and seeking justice for my mom and family. I have no formal filmmaking training or experience, but am determined enough to make something meaningful and impactful. I’ll be incorporating a significant amount of my own knowledge, experience and research in the film…
I’ve, also, been lucky enough, through making connections, to make plans to interview people who have worked on the “inside” of the mental healthcare system. One person used to work on a community mental health crisis team and another was a doctor in a psychiatric emergency room. I’ll be using my training as a Political Scientist to include a Politics of Mental Healthcare section in the film, as well.”
As a former caretaker, The Joker movie hit me in a raw way. I think the movie accurately portrays how society mistreats the poor and people with serious mental illness (SMI). I saw this, firsthand, in trying to help and take care of my mom, who struggled with schizoaffective disorder.
My mom wasn’t able to take care of herself adequately. She, in fact, had been suffering mightily and deteriorating for years. I couldn’t take it anymore. She deserved to live with a semblance of dignity.
When I started taking care of her full-time, we didn’t have a lot of family around and I didn’t have a lot of money saved up from my teaching job. So, my mom and I were pretty isolated socially and very reliant on the government for her healthcare and welfare needs.
I was able to stabilize her medically (physically) enough and keep her safe for two years, but society made it exceedingly difficult, in every respect, for me to do so. As it was, it never provided us with sufficient help and respect, since the onset of her SMI. My mom needlessly suffered for more than a decade. She would never be treated for her SMI and stabilized. She was discarded. We were discarded.
“They don’t care about people like you, Arthur.”
Those were the words spoken to Arthur Fleck by his government social worker (SW). She was referring to the policy makers (officials) who decided to close her office and, thus, cut Arthur off from his psychiatric meds. But as was clear in their interactions, even the SW didn’t seem to care all that much about Arthur’s struggle. As Arthur stated moments before she told him the news, “You never really listen to me.” He’s of course saying she doesn’t really care about him.
This was all too common an experience in trying to access MH services for my mom. For example, there was the time when an intake worker/clinician at a county Behavioral Health Department, in flagrant violation of county policy and state law, outright denied my mom MH services, because my mom, like many people with SMI, denied having a SMI!
The worker was cold and impersonal from the minute we met. I remember saying, angrily, on my way out of the interview/assessment, “I’m waiting outside, mama. All she’s doing at this point is filling out information so they can get their money for seeing you from Medi-Cal.”
There was the time when a hospital nurse and supervisor unsafely discharged my mom against my wishes. My mom was clearly in a psychotic state and unable to make a competent decision about her own care. My mom didn’t even believe she was in a hospital.
Despite this and her physical condition being fragile (She would be treated for sepsis and was just two days removed from a ventilator.), hospital staff would wheel her to a cab. They couldn’t even be bothered to do a psychiatric evaluation to see if she fit involuntary hold criteria.
This incident was an extreme example, but our experiences with various hospitals taught me they don’t give a shit about people with SMI. Whenever my mom started to become non-compliant, due to her psychosis, staff would become less attentive and they’d begin preparing her for discharge, even if she wasn’t medically stable.
And this is what they were willing to do regularly in front of me. I can only imagine what they did all those times I wasn’t with her before she lived with me!
“Is it just me or is it getting crazier out there?”
That’s what Arthur asked his social worker during one of their sessions. She responded by saying, “It’s tough times. People are struggling with no work.”
Her comment is a reference to the larger political and economic situation the movie is based in. It’s a pretty subtle backdrop, but the movie itself starts with a radio report of a pitched labor battle, a garbage strike, to help make that very point.
It lasts weeks and leads to increasing piles of garbage on city and neighborhood streets. Tensions build and, eventually, protests breakout at what’s clearly deep frustration with economic inequality and uncertainty, and government mistreatment and negligence.
Arthur’s access to his meds and social worker getting cutoff epitomizes how poor people with disabilities are some of the biggest victims of these conditions. Social scientists actually have a name for such government practices. They’re called “austerity politics.”
In a basic sense, we have been living under an era of “austerity politics” for decades. Since the 70s, governments, at every level, have been cutting costs and services (i.e. downsizing), in the name of “fiscal responsibility” and in order to foster a better “business environment.” It’s a process, a project really, that started as a result of a sluggish economy, increased foreign competition and lower corporate profits. The movie is set in the early 80s, the decade when the process accelerates. (My mom would actually lose her job with the State of California in the late 90s, due to layoffs.)
Mental health services have not gone untouched. People like to blame the Republicans and Ronald Reagan for the closing of state psychiatric hospitals. But today, even in “Liberal” San Francisco, we have a local government severely neglecting the needs of its own SMI population. So much so, we have local MH workers themselves speaking out against the inadequate conditions and publicly protesting. In fact, former Chief Psychiatrist of SF General Hospital, Robert Okin, describes the situation as a “war on the mentally ill.”
Arthur’s social worker’s full comment actually was “They don’t care about people like you, Arthur. They don’t care about people like me either.” I’ve had my issues with regular staff and frontline workers. In fact, a friend my mom and I made at her dialysis center even told me, in a private conversation, that her coworkers don’t care about the patients. They only care about the money.
This regime we are living under of austerity leaves me with no doubt, however, that high level administrators and public officials are the biggest culprits of all. They make it too difficult, if not impossible, for even the best and most empathetic workers to do their jobs.
“Society decides what’s fun-ny.”
Arthur says this after embracing his homicidal, violent urges and becoming The Joker. It’s the beginning of a strident public criticism he makes, while appearing on a late-night talk show, to explain his rage and motives. His criticism really is the first time he says something so politically cohesive in the movie.
In a basic sense, he says society made the rules and the rules were made to keep him marginalized and an outcast. He worked hard and honestly, but he lost his job cause of a dishonest coworker and cold-hearted boss. He wanted to get better, but he was cut off from his meds. He cared for his ill mother the best he could, but in the end, she was his biggest betrayer and abuser.
My life experience hasn’t been so bleak. In fact, there were many people, workers, clinicians and strangers that were nice to me and my mom, and did try to help in some way. And my mama knew I loved her and I know she loved me, even though her SMI strained our relationship.
But I damn well know there are too many people who have it worse, like Arthur. And some of them, unfortunately, do lash out with violence. As it is, I’ll never forget what was done to me and my family. I don’t know if I’ll ever be able to forgive. Society will try to focus on individual motives or psychological reasons for behavior it doesn’t like, but the fact of the matter is society, is too often, the monster.
My mom’s birthday just passed. She would have been a young 68 years old. Like last year, I went to the cemetery to take her flowers. Visiting her grave on special occasions is a kind of ritual for me now, and I don’t expect that to really ever change. It’s part of my healing, and my healing is going to be a long road, I’ve realized.
Sure, the grief is lessening, but other issues remain. Or I should say, have revealed themselves, like my Post Traumatic Stress Disorder (PTSD). Now, I knew I had anxiety. I’ve wrestled with that for some time. In fact, I mentioned that to my mom her last week with us, while she was in hospice, as a way to try and make some atonement for losing my temper with her at times. I apologized to her and said my anxiety can make me irritable.
Just weeks after my mom passed, though, I began to notice some persistent changes and problems with my mind and body. Things I hadn’t really noticed before. As I researched and learned through counseling, they were definite signs of PTSD. Before I explain my experience, here’s what the National Institute on Mental Health (NIMH) says about it:
“Post-traumatic stress disorder (PTSD) is a disorder that develops in some people who have experienced a shocking, scary, or dangerous event… Nearly everyone will experience a range of reactions after trauma, yet most people recover from initial symptoms naturally. Those who continue to experience problems may be diagnosed with PTSD.”
It’s well-known that PTSD is something experienced by many combat vets. Experiencing the death of a loved one, however, is also traumatic and can lead to PTSD in survivors, especially when the suffering is prolonged.
Mental health advocates have a name for this. It’s called “traumatic loss.” Two researchers define it the following way:
“A death is considered traumatic if it occurs without warning; if it is untimely; if it involves violence; if there is damage to the loved one’s body; if it was caused by a perpetrator with the intent to harm; if the survivor regards the death as preventable; if the survivor believes that the loved one suffered; or if the survivor regards the death, or manner of death, as unfair and unjust.”
My experience with my mom meets most of these “check boxes.” Over the course of many years, I lost my mom twice, once to her mental illness, the second time physically. In her last two years, the time she lived with me, her kidney disease would gradually take over. I witnessed her lose her physical strength and increasingly pre-age. And the violence? I saw, firsthand, how my mom was the victim of institutional discrimination, abuse and neglect. My heart broke over and over again, in many ways, in this whole ten year plus ordeal.
The sadness and guilt were as intense as I figured they would be, after my mom passed. But as I got better at navigating the murky waters of grief, I started to notice those other changes and problems.
For one, I was restless and uneasy. I would pace between rooms in the house at times. I didn’t recall ever doing that before, aside from the week my mom was in hospice. I liked to relax whenever possible. What was this about, I wondered?! I began noticing, too, that something was going on with my mind. Thoughts were racing and intrusive, and I would be a bit forgetful. I wasn’t able to “zone out” by just watching TV anymore. I had to, also, navigate and skim things on my computer, when watching a TV show. Memories and moments of despair played like songs on repeat in my mind, like the time my mom told me, about a month before she passed, that she didn’t have the strength in her hands to cut zucchinis for Albondingas soup. That was the last time she helped me in the kitchen.
I started to realize that it was like I was stuck. Stuck in my role as caretaker for my mom. Stuck trying to fight my hardest to keep her alive. Stuck dealing with, and often pushing back against, her doctors and hospital administrators, monitoring and assessing her condition every day, counseling her to take all her medicines, and then keeping her as comfortable as possible in hospice.
Yea, I was stuck. My body and mind didn’t know how to turn itself off or even how to lower the volume. Part of them, I’m sure, didn’t want to. I just wanted my mom back. How dare the system take her away from me, from us, so unjustly and prematurely! To accept my mom passing was to accept that we ultimately lost the “battle,” so to speak.
The restlessness, intrusive thoughts and hypervigilance I just described are classic symptoms of PTSD. I, thankfully, don’t have nightmares. But my sleep isn’t great. More than a year after mom passed, I still wake up a few times during the night, as if she’s still here. She’d wake me up, for different reasons, or I’d wake up to go check on her. And rare is the morning that I am able to sleep in past 7:00. I used to get up at that time, like clockwork, to give my mom her morning medicine. I can still be tired, but my racing thoughts won’t let me go back to sleep easily.
And irritability? Check. Anger? Check. While I experience these emotions at times, for what appears to be no logical reason at all, unrelenting intrusive thoughts summon them easily enough. As for flashbacks? Sure. When I see a homeless person or when I’m at a doctor’s office for a medical checkup, my blood pressure and anxiety easily rise. I’m back there, again, in some fashion.
All this said, I am in counseling and doing my best to take care of myself. I was 8 months into my grief counseling when I started to see another counselor for more formal treatment. He would diagnose me with PTSD. I’m also experiencing low-level depression, which makes the self-care part of my healing hard sometimes (I have little motivation to cook), but my counselors say I’m doing very well, all things considered. Still, I know I need to find a meaningful purpose. I need to find peace. I need connection with others. I need understanding. It’s a long road and will probably always be a winding one. But I’ll persist and continue to heal because I know my mom would want me to.
February arrived with a wallop. I was instantaneously taken back to this time last year, the month my mama passed. The memories and flashbacks began occurring with a feeling of slight nausea. That hasn’t happened before, at least not since mama entered hospice the second week of February.
As February approached, I’ve wanted to write a post on my yearlong journey with grief. All this has changed my mind. My emotions are raw enough right now. I need to be careful. I’ll be visiting enough memories and experiences naturally. I don’t need to immerse myself any further.
Instead, I thought I’d post a bit of our hospice experience. I believe I still haven’t processed the time and events fully, so maybe this would help. Today, the 16th, was the day she entered hospice. It was initiated in the hospital. She had been admitted the day before, due to breathing complications. Mama had stopped dialysis and started experiencing more fluid retention, exacerbating her congestive heart failure.
As was usually the case, getting mom into hospice was fraught with immense stress and hospital/medical bullshit. Here’s a short recollection of how the decision was made…. by me:
A year ago today, the hospital gave me the authority to make decisions for mom. I had to put her into hospice. She had stopped dialysis and was increasingly medically non-compliant. It was a decision you never want to make. I didn’t hesitate when they asked what I wanted, though. Mama’s suffering was too great.
It was a bit fortuitous the way it played out. Top to bottom, authorities and health care workers gave her too much agency. “She has the right to decide/refuse treatment,” they’d say. On this day, her doctor and the hospital social worker were in the room with me together. That never happens.
The doctor walked in while I was talking to the social worker. At that point, the social worker was being super unprofessional, casually talking to me about how downhill San Francisco had gone. How dirty it is and how it “smells like pee.” I’m pretty sure I made her feel uncomfortable. The moment she walked into the room, minutes before, I told her what I was expecting from them.
Hospitals have traumatized me. I was hyper vigilant and told her my mom is not being released, until a plan is in place for her to be adequately taken care of, whether at our home or a nursing facility. The doctor walked in and, after a short conversation with me, straight up asked the social worker, “Does Josie have mental capacity to make decisions?” The social worker, without assessing my mom directly, said, to my relief and surprise, “No. She has a serious mental illness.”
The social worker only knew she had a SMI because I told her she did during our short conversation. She didn’t assess my mama directly like I believe she is required to do. Mama was, luckily, sleeping the whole conversation, just a few feet away. (Hospitals are dumb. Their staff will have conversations about their patients’ mental states right in front of them.)
Interestingly, many times in the past, even when authorities knew mom had a SMI, they still always hid behind their civil rights language and laws: “She has the Right to refuse,” they’d say. This even when she was clearly in a psychotic state.
When I look back, maybe it was God or the universe helping me and my family. Mama had been saying Moses was coming for her, after all…. (To be continued)