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 recently went on a short trip to Spain with my father. It was the first time for both of us. It was something I wish we could have done ten years ago, when my dad was less physically limited. Unfortunately, back then, in 2012, my mama was homeless, living in her car. So, we were a bit preoccupied, on top of being busy with our jobs.
Though she is no longer with us, my mom isn’t ever too far from our minds. To honor my mom, I was already planning on leaving something of hers in Spain. My mama loved to visit new places and travel, before she got sick. Outside of Mexico a few times, my mom didn’t travel outside the U.S., but I know she would have loved to visit Western Europe if she got the chance. So, I wanted to leave a part of her there.
Not having too much to choose from, I had settled on her watch. I wanted somewhere meaningful to place it, but among the historical sites and places we visited, I had trouble justifying placing it among any of the ubiquitous Catholic edifices or relics. My mom was raised Catholic, but she would come to despise Catholicism. She came to believe the Catholic Church was “The Beast” described in Revelations in the Bible. This was a reflection of my mom’s religious views. She referred to herself as being “nondenominational” and had many criticisms of organized religion.
I was able to find a place in Cordoba, Spain. In Cordoba, there is an ancient bridge. The bridge was built across the Guadalquivir river in the early 1st century BC by the Romans. After the Romans, Muslims settled and dominated the area in the Middle Ages. At that time, it became the capital of “Muslim Spain” for many centuries. Christians (i.e. Catholics) would gain control of the area and in the 16th Century would build a Renaissance gate on one side, the “Puerta del Puente.”
As I learned more about the history of the bridge and the city, I became convinced it would be a good spot to leave my mother’s watch, since it was a place where so much world history, cultural and religious in particular, converged. In that sense, it was not about Catholicism, it was about human history and change. It was about time being impermanent. My mom’s watch stopped working shortly after she passed. But time still presses forward, as it does through all things, including after my mama’s heart stopped beating.
From our hotel, I jogged a mile to the bridge our last day in Cordoba. It was around 7:00am and still dark. The streets were still pretty quiet and a little eerie, but I didn’t mind the cover of darkness. I figured throwing my mom’s watch into the river could be considered “littering” anyways and I didn’t want to attract attention. I stopped about midway on the bridge, near the statue of what I thought was a virgin Saint. There were candles on the ground in front of the statue and a few were lit.
I had planned on doing a bit of a ceremony, something not too different than what I do in my home in the mornings some days. I started by saying to the statue, “I’m sorry, but I don’t know who you are. If you’re able to, I could use your comfort and protection.” Not being Catholic, I didn’t feel I could even ask for that. I was just showing reverence, mainly, since I was a visitor. I then said a short prayer. I asked for guidance from my mom and told her how much we missed her and how I wish she could be there with me. I then prayed a bit to Jesus. I said these prayers while looking out over the water. I could barely see the river in the black and indigo darkness, as the sun just started to make its presence known on the horizon.
I then started to do some chanting meditation. It is what I have been doing and studying a bit, as part of a spiritual and physical practice I am learning through my Aikido training. Specifically, I did a version of O’Sensei’s Kototama that I was taught by Linda Holiday Sensei recently. It is a standing version that incorporates arm movements.
The vibration it creates in my center (“hara”) helps me feel grounded, present and more relaxed. Spiritually, it is verbal and physical reverence to creation and the universe. Praying I do more out of reverence for my mom and how I was raised. The chanting is something I actually feel that is more relevant to me philosophically. Being based on Eastern Religion, it embodies connection, awareness and harmony (i.e. coexistence) with other living things and nature. Given that there is even Jewish history and influence in Cordoba, I thought it was powerful that at that moment, through my meditation, I was integrating a fifth religious influence into the city.
After chanting, I took a few minutes to take in the moment. A range of thoughts came up, including remembering my dad cynically asking me the day before why I had my mom’s watch with me, to wondering if my mom was on that bridge with me at that moment. Once I felt ready, I took the watch out of my pocket and looked at it one last time. My friend, Shari, bought my mom the watch for what would be my mom’s last Christmas in 2017. I made sure to text and let Shari know, when I got to the bridge, what I was planning on doing. She was very touched and supportive.
I kissed the watch next and, as I did, I smelled the unmistakable scent of lipstick. I knew the watch had a faint scent of my mom, a flowery smell that some of her clothes also have. But I’ve never smelled lipstick before on any of her things. I thought it was interesting and odd, but I did not think too much about it. I know many people would automatically believe that was a sign from my mom, but I had trouble doing so, cause that’s not my belief system. And being gone around twenty five minutes at that point, I was starting to feel like I should hurry to get back to the hotel to have breakfast with my dad. I carefully reached back and hurled the watch as far as I could into the river, hoping it wouldn’t land in too shallow an area. I didn’t see where it landed, but after hearing a splash, I was satisfied.
It was not until I was in a hotel in Madrid later that day that I decided to look up who the statue on the bridge was. It turns out it is a statue of a male figure, Saint Rafael. Saint Rafael is actually an Archangel and is responsible for healing. During the time of the plague, people in Cordoba would credit Saint Rafael with preventing the plague from causing widespread misery and death. The Spaniards placed the statue of him there in the 17th century. And interestingly, a version of Saint Rafael is found in not just Catholicism, but Islam and Judaism as well.
I have no way of knowing for sure if my mom was with me on that bridge. I like to think she was and that she let me know she was there by somehow conjuring a scent of lipstick. Whatever the case, I do know that since returning from Spain, I have felt recharged and I have a vitality that I do not remember feeling before. I am not as irritable and overwhelmed with work and the mundane everyday tasks of life like I usually am. I have been feeling more relaxed and calm. Indeed, the feeling of melancholy I know so well is not as persistent. I have no idea how long I will feel this way. I hope it lasts. I hope I did receive some permanent healing from Saint Rafael and/or the energies and/or gods in that place. In the least, I’ve been given more reason to continue my spiritual practices and to travel in foreign places more. I’m trying to live a fuller and happier life because my mama would want me to. And, of course, it helps that I do receive what could be signs of my mama being with me.
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.
This past Friday, the 27th, marked three years and six months since my mama passed. For a time, I’ve been wanting to write a post, a fictional piece, on what it’d be like to have a heart-to-heart conversation with my mama. I figured I’d do it now. What would make it fictional? Because in my fantasy, my mom would be well. She wouldn’t be suffering mightily from her untreated serious mental illness like she was for the last 1/3rd of her life.
By the time I was 24 years old, my mom was beginning to show signs of her serious mental illness. As time went on, and it went untreated, I would have to be extremely careful about what I shared with and told my mom. For one, I didn’t want to cause her any more stress. A stressful situation or event could induce an acute psychotic episode. Two, it could cause conflict with us in some way, since she could integrate anything I’d tell her into her delusional world. For close to a decade, she’d often implore me to quit my teaching job in San Francisco because she didn’t want me to teach “in a city with Satanists,” for example.
As a grown man, I could have used my mom’s support and advice about such things as work and relationships. I didn’t get that, though. Not the way I should have, anyways. So here is what I imagine a conversation would be like with me and my mom if she was of sound mind.
Me: “Work is a drag. They are cutting our pay substantially. But, of course, I still have as many students as ever in my classes. I’m never going to be able to buy a house in the Bay Area at this point. I’m fed up. The situation sucks the joy out of teaching.”
Mom: “Those devils. They certainly don’t appreciate the work you do as a teacher. You should pray on it and think about what you want to do. And, you know, it’s not too late to go back to school and get your Ph.D!”
Me: “I know, mom. But I don’t want to go back to school. Academia isn’t really for me. I don’t want to be a poor college student again and I can’t really stand the culture. It’s too snobby. I’ll try to stick it out at work a little longer. You remember how happy I was when I received the job offer?”
Mom: “Yes, of course. And your father and I were very happy for you. I tell everyone I talk to that you’re a community college professor.”
Me: “I know, mom. I was just starting to make pretty good money too, after 15 years of teaching. If I knew when I was 20 years old how much I’d be making, at least before the pay cut, I’d have been thrilled.”
Mom: “You’ll be a success no matter what you decide you want to do.”
Me: “Yea. It’d be nice to find something without the long work hours. Maybe I’ll move back to Fresno soon enough.”
Mom: “That would be nice for your father and I. But what about your female friend? What’s her name again? Stacey?”
Me: “Yes. We aren’t seeing each other anymore. I broke it off before it could get too serious. She was hinting at wanting something exclusive. Ever since my relationship with Marie, I’ve had trouble opening up to women I’m dating.”
Mom: “That relationship was not healthy for a large portion of the time you two were together. That was, also, some time ago now, though. I know your father and I argued a lot in front of you and your sister when we were married, but we did try, as you know. You should try not to repeat our mistakes.”
Me: “I know, mom. You made us go to family therapy. I didn’t appreciate it or really get it at the time, but I think it was admirable and smart for you to do, looking back.”
Mom: “Yes, therapy helped a bit, but your dad was set in his ways and emotionally shut off. He changed when he came back from Vietnam.”
Me: “Yea, when you first told me that, I wasn’t sure whether or not to believe you. But then cousin Melissa confirmed that you said that about dad back then. Whatever it is exactly, it prevents him from even listening to me when I want to talk to him about important things, unless I demand it. I practically have to yell at him to listen to what I have to say sometimes. It’s going to be hard on me if you end up passing before dad. He doesn’t understand me or just the world like you do.”
Mom: “Your dad has a big heart. Just try to be more patient with him and watch your tone when you speak to him. You get impatient quickly with people.’
Me: “I know… that’s what Marie said. That’s what Stacey says. That might be a little bit of what I picked up from dad growing up. I’m trying to improve that.”
Mom: “Maybe go see a therapist. Hahaha”
Me: Maybe…Are you proud of me, mom? At the man that I’ve become at 45 years old?”
Mom: “Yes, of course! Why are you asking me that?!”
Me: “Cause I’m a very different person than I was 20 years ago, even 10 years ago. I have a demanding job with a lot of responsibilities and, I’m not complaining about this, but those years I had to help you when you got sick were hard on me. I feel like I didn’t really enjoy my thirties and now, at 45, I’m single and don’t own a home. It makes me doubt myself.”
Mom: “I’m very proud of you. I couldn’t be prouder. I, of course, wish you would develop a closer relationship with God. But that’s between you and him and I know you try in your way to have a spiritual practice. I think you live by your principles and genuinely care about people and others. And your smart and successful, yet humble and grateful for everything you have. God will continue to bless you because he knows your heart and sees your actions, and I take comfort in that. Knowing he will look after you, even when I’m gone.”
Me: “Well, I’d hope that you’d look after me too, assuming you could from the afterlife.”
Mom: “You may not be sure, but I am. The love I have for you and our family is undying. You’ll see!”
Me: “I know, mom. You are a wonderful mama. You did a great job.”
I’ve decided to try and convert this blog to a promotional page for my film, Benevolent Neglect. Having a website for my film is one of those marketing aspects I haven’t been able to create yet, given I’m a one person operation and my regular “day job” keeps me way too busy. I’m content with the positive responses my film is garnering, but I know it has the potential to attract a bigger audience. That’s the only way any politicians are going to take it seriously, I figure. I’ve sent it to officials to watch, but haven’t received any response or feedback from them. Typical, I know. In the least, it will give me something productive to do when I feel my advocacy is fruitless. I’m not sure what it’s going to look like yet, but I still plan on blogging on occasion, once it’s converted.
In the meantime, here are some short videos I took when I went to visit my mom at the cemetery on Mother’s Day. I was feeling somewhat creative and wanted to give a more personal feel for what it’s like when I’m there. I’ll usually stop by on my way to Fresno and then, again, on my way back to the Bay Area. The first video is the Friday, two days before Mother’s Day.The second video is on actual Mother’s Day. A mariachi band greeted me as I arrived. It was lovely.
It was the third Mother’s Day without my mom. I would normally take her to Marie Callender’s, her restaurant of choice for the occasion. I turned 45 years old this year. I should still have my mother.
I guess it has been a minute since I’ve done a proper blog post. It has been more than a year, in fact. My advocacy time has been mainly spent on promoting my film. And I don’t even have a lot of time for that, given the demands of my teaching job. Remote teaching this past academic year has been, frankly, the pits, in terms of the workload.
At times, in the past, I’ve felt impelled to write a blog post, as a way to “reclaim my time” from the demands of life. I’m surprised, though, that hasn’t occurred once this past year, even when February arrived. That month made 3 years, 3 years since my mama passed away to, hopefully, be with her “Heavenly Father.”
In a sense, not writing about it is perhaps an indication that I’m continuing to heal. While I was contemplative and sad, it was nothing like the 1st year anniversary. Then, it wasn’t just the approaching day of her passing, the 27th that weighed heavily on me. When the month of February arrived, I began to experience nausea; the same nausea I last felt during the 9 days my mom was in hospice care. Each subsequent day, she deteriorated. “Near death symptoms” would begin to develop and I’d increasingly worry I wouldn’t be able to “keep her comfortable,” which is the main aim in hospice care. As the day I brought her home from the hospital to hospice care approached, I felt impelled to chronicle it some: February Musings #1: Mom Enters Hospice
By the time the 2nd anniversary arrived last year, I was in Berkeley and fortunate enough to be working on my film as part of my sabbatical project. Though I was just in my early scriptwriting stage then, I think working on my film provided me with some sense of catharsis. Even when my mom was alive, as futile as it often was, doing advocacy was important for me to at least feel like I was doing something to help her and my family. Making the film was no different, in that respect.
The challenge I knew I was going to have, though, was processing and accepting that the same amount of time had passed as we had spent living together. Those 2 years together were exceedingly difficult. Truth be told, I know damn well it was more like 4 years, physically and emotionally. My body and mind are still exhausted from the ordeal. Still, as trying to live a more “normal life” has shown me, I know 2 years is practically nothing in the context of being a responsible adult. Admittedly, it actually causes me some guilt knowing that I was only able to provide my mom 2 years of adequate security and safety out of what was at least 15 years of her living with an untreated serious mental illness. That was fully a 1/3rd of her adult life she lived that way!
As can often be the case, my mind can be in a bit of an unpleasant place. “Two years ain’t shit!” “Her kidney disease robbed us of having a so much better of quality of life.” “God, or whoever may be listening, why the hell did it take so long for me to find a place for us to live? Where have you been in all this?” These are just some of the things I thought about and said out loud the week of hospice, at times, leading up to the 27th of February last year.
As the 3rd anniversary approached, it was hard to wrap my head around it. The grief is still intense at times and the circumstances surrounding the Pandemic have been terrible for my healing. I haven’t been able to do Aikido, for example, with the closing of the dojo. I’ve been pleased with the response of my film, but the gnawing sensation that I should be doing more mental health advocacy is a constant.
I knew this year should be better for me than the first two. But part of what makes February hard is that it’s also my birthday month. Unfortunately, my last birthday with my mom was depressing. That morning, on February 6th, she’d decide to stop continuing dialysis. During our dinner out to celebrate, I got frustrated with her and complained a little bit about our situation. My mama, at that point, was very withdrawn, given her declining health. She didn’t respond to anything I said. We ended up barely talking over dinner at all. That memory pains me a lot.
On my birthday this year, I noticed a hummingbird had started building a nest in a tree on my patio. The tree was just 5 feet away from my kitchen window. On the 14th, the mama would lay an egg. Two weeks later, the baby would hatch. It’d grow and gain strength quickly.
Within almost two weeks of hatching, its head was just about as big as the mama’s. Watching it feed, its head bob up and down rapidly, was a beautiful sight. Seeing it lift its rear end up to defecate outside the nest was hilarious. In a short time, it’d begin to exercise its wings, usually after the mama would leave after feeding it. It was trying to mimic mama, I thought, because she’d hover a little before taking flight. The baby then began to perch itself on the edge of the nest. And, finally, I’d see one of its first flights, before leaving the tree for good.
My mom asked me one time, many years ago, if I’d ever stopped to enjoy the flight of a hummingbird. I was able to do that many times and more with this experience. I’m grateful for what the universe gifted me during what is an exceedingly hard time. I like to think the universe was letting me know it is looking out for me, much like the hummingbird mama did its baby even during stormy weather. My mom and I rode out many storms together and I know, as estranged as we were from each other, her love for me and her family was undying.
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.”