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.
A year ago, today, would be day 6 of hospice for mom. By then, she wasn’t eating and was physically very weak. She needed substantial assistance to get out of bed to go to the bathroom or another room.
At one point, I believe on day 5, she asked one of my cousins why she was getting weaker. My mama truly didn’t understand. Such was the state of her serious mental illness (SMI); She’d have little self-awareness about her true medical condition.
Indeed, since my mom first started exhibiting signs of a SMI, this had been a constant feature. Even as her physical health sharply declined over the years, her lack of self-awareness just became more elaborate.
“The machines (blood pressure and glucose monitors) work when they want to.” “The lab results are being tampered with.” “The medicine is what’s making me sick.” She’d say all these things and more on a regular basis.
In fact, to my mom, the beginning of hospice just confirmed her belief that she would start getting better, since she could stop taking her medicines (In hospice, a patient’s regular medicine is stopped and the focus becomes on keeping him/her comfortable. Yay for morphine.) This is what she was saying God wanted, before hospice even started, after all.
While we were careful with our words, in response to my mom’s question, my cousin could only tell her the truth, “It’s your kidneys.” Mama didn’t respond. It was taking a lot of effort for her to talk at that point. Perhaps she just decided to save her energy or just pray silently. But I’m sure that didn’t make any sense to her at all. My mama was expecting to get healthier and stronger, not sicker and weaker.
As if navigating the situation and counseling her weren’t challenging enough, given her delusions, she’d also experience intense hallucinations.
Now before hospice, as part of her SMI, mom had regular audio hallucinations. But aside from occasionally seeing things that weren’t there, like cameras on the walls (They were usually just spots of sunlight coming into her room.), she didn’t really have visual hallucinations. Visual hallucinations began appearing relatively early in hospice, though. Being new to her, this understandably confused and, at times, distressed and scared my mama.
They’d begin on day 3 and, curiously, would begin around the same time she’d start developing severe apnea. My girlfriend and I were talking to my mom by her bedside in the evening, when she seemingly started nodding off to sleep. She closed her eyes mid-sentence and her head began to lower.
Around 30 seconds later, she raised her head, opened her eyes and asked us:
“Do you see them?”
“See who, mom? It’s just us. What’s there?”
“There’s some people standing over there. Shadowy figures. I can’t make out their faces.”
“Are they scary, mom?” I asked. To my great relief, she replied, “No.”
This continued around an hour that evening. Mom wouldn’t see things every waking minute, fortunately, before finally falling asleep. But she’d continue to see the shadowy figures and would begin to see flashes of light. She’d also say she saw a woman she didn’t recognize, sitting in the room with us. Thankfully, mom wasn’t frightened, but she was perplexed by these new experiences.
Disturbing and scary hallucinations first appeared in the form of several faces she would see. One appearing minutes after seeing a little girl. We had just convened in the living room with my aunt and cousins.
“Do you see the little girl?” she asked, as she pointed behind the couch.
“No mom.” “No Aunt Josie.”
The little girl disappeared and we continued talking and interacting with her, as normally and supportively as possible. My cousins, being older than me, had a lot of good memories to share with my mom and I about my mom’s younger days. They were reminiscing when my mama let out a sudden shriek and pointed towards one corner of the room. I don’t remember the exact words she used to describe the face, but she described a ghoulish or devilish morphing one.
Unfortunately, these scary visual hallucinations would continue when mom had acute psychotic episodes. I believe three altogether. In the evening on day 6, for example, she started complaining that her feet were getting really hot. She pleaded with my girlfriend to take her socks off. “Hurry! Hurry!” she said frighteningly.
She then described seeing the earth opening up below her and became afraid she was going to fall down through. We did the best we could to keep her calm and assure her Jesus wouldn’t let anything happen to her. “Focus on Jesus, mama. Look for Jesus. Nothing sinister is welcome here.”
The hospice chaplain recommended we tell her to look for Jesus and the light, when she started seeing things. During another acute episode, I read her favorite verses from Psalms for close to an hour. My aunt and cousins prayed with her, recited the Rosary and had salt at the ready for the duration of their stay.
I saw my mama suffer tremendously throughout the years, physically, mentally and spiritually. It traumatized and saddened me, for sure. And seeing her scared during hospice was particularly heart wrenching and painful, since she was in her final days.
Not being especially spiritual or religious, I found myself asking my grandmother, my mom’s mom, to help me and mom, out of desperation. I think she visited us on day 7, in the early morning. I’m pretty sure I smelled her, after not smelling her in more than 20 years. I, also, think mom sent a humming bird to visit me this past Monday, what would be the first day of hospice last year. I’ll elaborate on that event in a subsequent blog post.
Hospice was life changing. I’ll never be the same again.
Since my mom passed away 5 months ago, I readily admit that I’m experiencing an existential crisis. My mom needlessly suffered a long time. Going back to when more obvious signs of her serious mental illness (SMI) began showing in ’03, we are talking at least 15 years.
My family and I had to helplessly watch her suffer too. For me specifically, I watched her suffer every day the last two years that she lived with me. Not a day went by that I didn’t deeply worry she could die or slip into a coma, so grave was her physical condition. Her psychiatric condition was such that I had to watch my mom live in daily distress. She was a prisoner to her delusions and hallucinations.
Her 8 days in hospice went well enough, all things considered. But for us, specifically our relationship, there was no real closure. You see, we couldn’t tell my mom she was coming home from the hospital to die. She didn’t want to die.
I nervously made conversation with her when she arrived back at the house from the hospital. It was difficult to find the right words. It usually was, talking to mom.
Me: “They [the hospice] came suddenly for you, huh?”
Mom: “Yeeaaa,” she replied disapprovingly.
Me: “No more hospitals?”
Her: “I hope not,” she said dejectedly. She loathed hospitals and was very tired and weak, after stopping dialysis.
Me: “OK,” I said. I didn’t tell her my full thoughts, though. “OK mom…no more hospitals.”
My counselor says I’m doing surprisingly well. I attribute it to my family’s strength and fortitude, particularly my mom’s. What a fighter she was! I, also, attribute it to the grieving and heartache I experienced all those years prior to my mom moving in, though.
The first year of the two she’d spend homeless living in a car, for instance, was probably my lowest point. Getting through that intact helped me weather future storms.
Still, I know my ability to find adequate peace and happiness, moving forward, will largely depend on my ability to understand my mom’s suffering in a way that provides me comfort and mitigates my deep anger and sadness. This is largely a spiritual inquiry, I realize
I don’t really know where to begin, though. I’m not religious in the Christian sense, at least not anymore. My mom loved the Lord and she instilled her love and understanding of the bible’s teachings to me and my sister from an early age. Going to college, as it can do to people, made me more secular, though.
There was a time in my early twenties that I considered myself an atheist, in fact. As time went on and I reached my late twenties and early thirties, I became more agnostic. I don’t doubt part of that change occurred from the heartache I endured, seeing my mom’s initial onset and then condition deteriorate over time.
I’d gravitate a bit towards Buddhism, mostly through my training in Aikido, a martial art. The founder of Aikido, Morihei Ueshiba, consciously developed Aikido as a physical embodiment of his spiritual views and principles. He specifically adhered to Shintoism, an ancient Japanese religion. By the time Ueshiba began practicing it, though, it was heavily influenced by Buddhism. There are definite similarities.
Like Shintoism, there are many deities and prayer rituals in Buddhism. My interests, though, are in cultivating certain principles and “states of being” valued in Buddhist philosophy such as empathy, peace and harmony with others and the environment, and being in touch with the present/one’s surroundings. I’ve found developing these very useful in helping me deal with immense stress and anxiety.
Indeed, I believe both my Aikido training and study of Buddhism helped me become more aware of my internal emotional processes. This allowed me to better mitigate my pain and fear, my depression essentially, through the years, especially during the time period when my mom was homeless.
This isn’t to say I didn’t ever pray or show reverence to Christian tenets and practices. I prayed with and for my mom. I even visited a Catholic priest with my aunt years ago to get insight as to what was happening to my mom. He assured us that it wasn’t demonic possession (I already figured as much.).
This continued when my mom moved in with me in February ’16. When I prayed, though I may have said the word “God,” I didn’t really pray to the Western, biblical one. To the extent I was praying to something at all, it was to the universe or to my ancestors. I prayed at times to my grandma, my mom’s mom, to help us in some way, too. I essentially prayed to anything that could and would help. It didn’t seem like anything was listening, though, at least at the time.
Now that my mom is gone, I’m trying to remain as open as possible to the spiritual possibilities and facets of life. Admittedly, I contemplate from time to time that there may very well not be anything greater than the physical world and, maybe someday, I’ll draw that conclusion. But right now, for me to accept that entirely would lead to the most cynical and depressing states of mind.
Fortunately, my perception has, also, changed already, in a way that allows me to see things anew. I truly believe my mind and senses are the clearest they have been in years. This has made some of the journey a bit more painful, as the depths of my mom’s suffering are easier to see and feel. But it has also helped me see and appreciate certain events as something greater than mere coincidences. In other words, as assurances from the universe, and even maybe my mom, that things are going to be OK and that I do have help. I wasn’t able to see this before.
To share just one example: After some mulling, I decided to buy the cemetery plot next to my mom. While we buried her in the same cemetery as her parents, she’s immediately surrounded by strangers. I didn’t feel comfortable with that, ultimately.
I didn’t realize it right away, but the account number I was assigned for my plot is “5150.” I couldn’t believe it when I noticed it on the paperwork, while sitting at my office desk at home that day. It’s not an exaggeration to say that that sequence of numbers fully characterizes the nature of our relationship for the last 10 years. 5150 is the California legal code for involuntary hospitalizations and something I would try to have done to my mom multiple times, in the hope she would be stabilized.
If my mom was trying to send me a message, that would be a way she’d do it. She had a sharp sense of humor and was definitely blunt when she needed to be. When I saw the numbers, I just smiled, shook my head and said, “OK mom. Good one.” I didn’t feel like she’d be mad at me, though she’d despise me trying to hospitalize her, while she was alive.
After all, she used to like to tell me that someday the “truth will set me free.” She’d say it in reference to her delusions and hallucinations. They took a very religious form. When I’d get frustrated, I’d sometimes throw it back at her. “The truth will set you free, mom.” I can only hope that she would know and accept the truth now.
To touch on some science, I know the mind can see what it wants to see. But events like this one seem too improbable to accept as just coincidences. And I know one thing is absolutely certain. That things like this, patterns or connections between events and my family’s history, didn’t happen before my mom passed. If they did, my mind and heart weren’t open to them. The suffering and depression were too great. An event like that above, I’d just as likely interpret as more “bad luck.”
That was confirmed as much by a Buddhist counselor that spoke on trauma at a recent meditation workshop. He said that people need adequate breathing space and refuge, in order to cultivate their minds, bodies and spirits. He’d go on to say that people who are in life and death circumstances, especially those who have developed trauma, have a much harder time cultivating the calmness and clarity (i.e. being present) necessary to make and feel connection with people and the world/universe around them.
Heck, when I think about things in hindsight sometimes, I now see that, as hard as things were, things worked out OK for us in many ways. There’s also the “coincidence” that my mom nearly passed away exactly two years after she moved in with me. It was like the universe or God was saying, “I’m or we are watching and with you.” That was confirmed recently by the pastor of a local church my mom and I attended. In assuring me that my mama was looked after, even through her sickness, Pastor Lyn said, “Jesus is behind us, beside us and in front of us through our trials.”
Whatever the “truth” is, I’m grateful I’m finding some solace in things I’ve experienced and seeing things anew. Little rituals, like honoring a family altar I put up in my living room, help too. I don’t know where this path I’m on will end. But I do know that as long as I let my love for my family and principles, like justice for the poor and misfortunate, guide me, things should workout. I got through the worse of it, after all, OK. I’m pretty sure both Jesus and Buddha would agree.
It has been a little more than three months since my mom passed away. Sadly, her scent is virtually gone from her room, but I am doing the best I can to honor and cherish her memory. Indeed, this is a central part of my healing process.
I try to visit her grave weekly in Madera. I’ll usually stop there for around thirty minutes, while on my way to visit my dad in Fresno. On special occasions, like Mother’s Day, I’ve stayed for more than an hour.
Last Friday, June 1st, was her birthday. Mama would’ve been 67 years old. For the occasion, I dressed up and took her a dozen red roses. She loved roses. Unfortunately, she wasn’t able to enjoy them for around the last ten years of her life. She, in fact, didn’t want any roses or plants near her because she thought that toxins could enter her body through them.
That’s what my mom’s untreated serious mental illness made life like for her. She literally couldn’t stop to smell the roses. Every day for her was a struggle. Seeing her suffer and deteriorate was a living nightmare for me.
One of the first things I did after my mom passed was throw out all her medicines. At any given time, my mom was taking around ten different ones for her various serious conditions. She was prescribed dozens of different ones in recent years. This includes “anti-psychotic” drugs like Zyprexa and Risperdal, but she never stayed on those long enough for them to have any effect on her.
The Risperdal was, ironically, prescribed to her during one of her last hospitalizations in January. They had never bothered to try and treat her SMI before when she was hospitalized. Predictably, she refused to take it after the first dosage because it made her feel drowsy.
I actually told the hospital staff to not give or prescribe it to her. What was the point? Why prescribe her psychiatric medicine without her being under the active care of a psychiatrist? The hospital didn’t even bother giving us information as to how to find one. They prescribed it anyways. It was waiting for me the next time I went to the pharmacy. Money, money, money! The game is rigged in the favor of the pharmaceutical companies.
Anything left from her week in hospice I threw out immediately too. My house and her room are going to be a sanctuary of peace and good health only. I returned pictures she had placed in plastic bags and drawers to keep safe from “being stolen” to their original locations. I placed her personal possessions, like her Bible, to prominent places on her dressers and book shelves. I bought a house plant for her corner table because I want something alive and beautiful to be in there.
These rituals and acts seem to be helping me. The feelings of guilt, which experts say are inevitable, are subsiding. Increasing my physical activity, reconnecting with extended family and attending counseling are all helping too. My trauma counselor told me yesterday that it was like I was in a war and I was the medic, the frontline and the commander all at the same time. I know it’s going to take great effort and time to calm down from that and sort things out.
He also said that I’m doing really well. I like to think it’s because I have my mom’s fortitude. She was so strong. Her faith never wavered! I, also, like to think that I have her guidance now. I’m asking her for it every day.
My world has been turned upside down. I’m starting a journey without the constant anxiety and fear of what may happen any minute to my mama. That struggle went on for at least fifteen years. I know she’d want me to do what makes me happy. I’m trying, mama.
“The real political task in a society such as ours is to criticize the workings of institutions that appear to be both neutral and independent, to criticize and attack them in such a manner that the political violence that has always exercised itself obscurely through them will be unmasked, so that one can fight against them.” –Michel Foucault
Despite my family’s best efforts to care for her and make sure she received adequate medical and mental health treatment, my beautiful mama passed away prematurely on February 27 at the age of 66.
My mom was the daughter of Mexican immigrant farm workers and the youngest of eight children. She graduated from high-school and received her Associate’s Degree from Fresno City College, despite having to work in the fields with her family starting from a young age. She would marry her high-school sweetheart, my father, shortly after his return from the Vietnam War.
My mom was a devoted wife, mom, sister and aunt and would defend her family fiercely from all injustices and dangers. One of my earliest memories of her protecting me involves her confronting an older boy who was bullying me when I was in first grade. In talking with him, she convinced the older boy to act as a bodyguard for me against any further bullying from anybody.
When she was not busy working or advocating for us in our schools, my mom enjoyed hosting and feeding extended family and our friends. Whether with her lasagna or albondigas soup, my mom would regularly showcase her excellent cooking skills. Her menudo was particularly good. To this day, my dad adamantly says he has never had menudo as good as my mom’s. In recent weeks, my cousins have reminded me how central my mom’s love, charisma and generosity were to our larger family’s closeness and happiness.
My mom also loved and served the Lord dutifully. Indeed, the two things that made her happiest were being with friends and family and praising and sharing the “word of God”
with others. Her faith in and love for God shaped most of her relationships and many of her decisions. The joy she expressed in her faith would provide the ultimate benefit to one of her childhood friends when they would reach their 20s. My mom gave her friend religious testimony and counseling that literally saved her friend from a dark, depressing time. I learned about this in the tribute my mom’s friend gave at the funeral service. “I wanted that joy,” my mom’s friend said.
While the immediate cause of her death was kidney failure, I know the main culprits are a negligent and abusive healthcare system and callous and inhumane government. My beautiful mama began exhibiting signs of a serious mental illness as early as 2003. She began claiming people were out to get her and that microchips and hidden cameras were being used to track her movements and interfere with her thoughts.
After years of witnessing her neglect her diabetes and put herself in dangerous situations numerous times, I began intervening to try and get my mom help in the summer of 2007. By then and much to my agony, my mom was hearing voices and talking to herself. Little did I know how virtually impossible it would be to get the help my mom desperately needed.
From top to bottom, the healthcare system showed a constant disregard for my mom and our family. Medical doctors and hospitals had little patience and sympathy for someone who frequently would become distrustful and non-compliant (Patient Dumping from a Son’s Perspective). Skillful and caring counselors and psychiatrists we’d interact with were few. Even then, there was little they could do, given my mom did not believe she was ill and refused to take psychiatric medicine.
And while there is a legal basis to involuntarily hospitalize someone against their will, authority figures would regularly find my mom “self-directing” enough as the reason for them not to take action. For example, numerous police officers would say like pre-programed robots, “A person has to be lying down naked on the railroad tracks for us to take them in.” Hospital social workers would ask me “What does your mother want?” when I would request a psychiatric evaluation. Me saying “She wants to be with her family,” would garner little sympathy.
When she was homeless and living in a car for a time, I pointed out to a representative from the Californian Department of Public Health that she meets involuntary hospitalization legal criteria, since she was homeless as a result of her mental illness. I was told that, “Technically, a car roof is a roof over one’s head.”
Ultimately, in the end, though they were claiming to respect “civil rights,” they all were actually aiding and abetting a system that refuses to provide quality psychiatric hospitals and treatment and, instead, prefers to leave too many people to suffer, estranged from family and friends in the streets or thrown away in jails or prisons.
I moved my mother in with me in February ’16 because I could not continue to see her suffer and estranged from the family she loved and did so much for. I lost my mama twice, the first time to her mental illness and the second time, years later, to her physical illness. I was never able to have her be a fully healthy part of my life during most of my 20s and all of my 30s. Now I am 42 years old and will have to figure out how to rebuild and live my life without my beautiful mom.
I am currently seeing a grief counselor and it is clear I have a lot of trauma, emotions, and anxiety to work through. What will help me heal and prosper are the strength and courage my mom showed through her adversity. She never wavered from principles or lost her faith in the Lord or her will to live. I hope to become half as strong and half as principled in my life, particularly in my advocacy for a better healthcare and support system for caregivers and families. We deserve better. My mama deserved better. We love and miss you mom.