To Live and (Almost) Die in L.A.: A Survivor’s Tale

Panhandling for Life

As a “consumer” of LA County Mental Health Services, I have sometimes had to avoid suffering by begging on the street. Panhandling never came easy; aside from the shame, you could ask for a buck and a quarter for the bus and get ten cents. You’d spend the next two hours sometimes groveling over and over until you got enough for a round trip ride to the food bank.

But I have found begging useful, if not comfortable. It got me through twenty-five years of chronic emergency, twenty-two mental hospitalizations (back before we all realized these were not ever going to work), a stint at a “community mental health center,” thirteen years in a Pasadena “board & care,” repeated withdrawals from addictions to legal drugs (while faithfully compliant), a twelve-year marriage, a certificate in graphic design, and the Rose Parade.

Well, I am begging for resources once again. I have just read an article, “After Seroquel,” by Nancy Rubenstein del Giudice. Is there a test or a clinic to repair the damage of previous high daily doses of Seroquel, Depakote, Lithium or Clozaril? I have been incredibly sick for a year with an apparently undiagnosed something and am exhausted with groveling. I cannot find a doctor interested in looking for clues to severe exhaustion and dizziness. The PA tells me that it is “probably not” hepatic encephalopathy but provides no guidance or testing other than lab after lab and another appointment in three months. Doctors continually pursue my history as a psychiatric survivor — not the years of psychiatric overdose, but the history of social bewilderment.

The Literary Critic in the Hope, As Advertised

I was a little lucky to have been born of monogamous, evangelical, missionary teachers on the Navajo Checkerboard Reservation. They at least believed in history (if only EuroAmerican history), in education (if only EuroAmerican education), and in books (if only books written in English aligned with EuroChristian culture). So I believed in books; I grew up believing in democracy and equality; I believed that suffering had a purpose: the demonstration of the compassion and glory of God. I always believed you could be better and useful, and maybe even joyful, after steady discipline and measured labor.

It all fell apart when I turned five. Violence, cultural disconnect, and unmitigated patriarchy contributed to our psychological confusion. My faith disintegrated further when I was seven, then nine, then fourteen and eighteen, imploding in a mental breakdown in Bible College when I was twenty-one, in 1979. I did not quit then. I eventually became one of the connected white citizens to have been provided SSDI (Social Security Disability Insurance), after leaving McKinsey & Company in 1988. I did work as a clerk for Pacific Clinics in 2002 for four years.

This was an environment of bullying: the clinicians were only condescending; the lower-level staff were vicious. I will never again work in the system which marshals the “redeemed” (i.e., those with American degrees in psychology and the eugenics of the “Compendium of Psychiatry”), as the shepherds of the “pagan” (those learning from world perspectives). It feels to me that an MFT or a degree in Social Work or Psychiatry becomes a membership in a party which may or may not be perpetuated in heaven. Those who continue to struggle toward greater light, as opposed to simply white, must be forever lost.

In that time, I learned much about the System and nothing about resilience or progress. I joined the peer movement in L.A. County in about 2006; it had also not quite died yet.

I think we Advocates had hope at the political level before our personal records were lumped in with the new Health Agency databases, when we were fingerprinted and our documentation provided to anyone with “authority” under HIPAA. I am talking about “progress notes,” a system whereby clinicians in public mental health are required to take “evidence-based notes” on every session. These are meant to be brief, to “prove” to the Government that their money is not being wasted. It is. “Progress notes” are entered into the system and frequently reviewed in nightmare audits by the County. Clinicians are trained in the nonsensical complexity of not saying anything of consequence, but saying only those items that can be reduced to a dot plot. These pages and pages of abbreviated nonsense are in our permanent records. Some of us have tried, as is our legal right, to get access to these notes, with no return email.

It had become a criminal act to be accused of a diagnosis. I could not apply for a job other than “peer support,” what with the barriers of fingerprints, no transportation, and “gaps in the resume.” On SSDI, they would garnish your check if they discovered you had more than $2,000 in savings. I couldn’t save for a car, pay for competent therapy, or start a business. Couldn’t get credit. If you are arrested for confusion, they take your phone; you could be disappeared into a privatized system such as a board & care with $100 per month with which to start another life elsewhere. You could be shot by police for making a 911 call for mental health assistance. Suicide hotlines are recorded. In a climate of such abject dependence, we do not need social workers and case managers to “help us develop life skills.” We need Advocates and friends to survive. We can live without medical insurance, but we are dying without intelligent healers free to act with experience.

• If I refuse the drugs that destroy my body, then I am in noncompliance.
• If I seek care outside the State System, I sink into endless debt.
• If I now choose to maintain my recovery with healthy alternatives outside the County System, then I am in danger of having my income cut off before I can develop the community and products that I need to sustain me into retirement.
• If I will not admit that recovery is impossible because it is genetic, then I am in denial.
• If I say I am no longer mentally ill, how do I account for a life of failure as a useless eater?
• And if I am cold toward NAMI, the Church, MHA, and SAMHSA on the basis of serious cultural issues, I must be stuck on an FBI watchlist.

Nevertheless, I am taking my high school education seriously, along with what is said in the brochures of the Department of Mental Health, that recovery is possible and essential, not only for the individual but for the State. I so look forward to paying taxes.

Recovery Movement

My monumental recovery from “mental illness” occurred in 2012-2013. It took two years of pecking and wiggling my soggy feathers out of the sticky shards of divorce, during which I obtained several degrees of education:

• AA (Alone Already), Los Encinas “Hospital”
  Primary Models in Psychiatric Exceptionalism:
  “How can someone with so many emotional problems be so brilliant?”
• BS (Bachelor of Science), Della Martin “Hospital”
  Intensive Independent Study:
  Two weeks in the shriek of geriatric patients in need of immediate assistance not forthcoming
• PhD (Please Help, Dog), Del Amo “Hospital”
  Gang Warfare in Therapeutic Forensics in a HealthCare Partners-Contracted Camp: Friends assisted me through two inpatient courts to allow me to retain my Social Security income and come home.

I matriculated from “mental illness” in three flash courses through the study of the contrasting accredited models. I was 54 years old. Old, but not dead yet. When I got back to the enclave of Pasadena, I moved out, got a divorce, picked up a Professional Peer Support Certificate, and began focusing in earnest on an A.S. degree with a Certificate in Graphic Design. By that time, I had 162 units of credits from two colleges and a university. I was recovered, lightning struck, hunched forward like a sumo wrestler, mean and wild. Still am, only now the wild is accompanied by encephalopathy (or something). Don’t know what to think anymore. Never know in a pinch what is rolling out of my orifices.

Then 2018 happened. 2018 is a book I might write later, “No Mas Funky Que Wow.” Several events occurred, completed by physical collapse at Pasadena City College in April and the suicide of a brilliant friend in May. I applied with MediCare for funding for extra sessions with my psychotherapist. SCAN would only pay for drugs: $560 per month for Seroquel, from which I had titrated years earlier. They would pay for Buproprion and Lithium and visits to an unknown shrink. They refused to pay $360 a month for therapy, which I had been paying bi-monthly out of pocket, and which I have always found effective and not debilitating or overtly stigmatizing.

The requests for “mental health treatment,” along with letters of protest to both SCAN and Healthcare Partners, were duly recorded for every subsequent medical doctor. I elected to retreat for two weeks to Hacienda of Hope Respite House (PRPSN) where they allowed me my own clothes along with my shoestrings, my belt, a bed, an unlocked door and a garden. Mind you, the acceptance of government funding by Project Return still requires Advocates to come up with computer notes of private information inconsequential to any healing. And no counseling by “nonprofessionals” is allowed, even though these counselors have abundant experience in navigating trauma and injustice. But silence is sometimes gold. Private rooms with double beds. No restraints. No padded cell for panic attacks. No obliterating drugs causing shaking, nausea, psychosis or the terror of numbing. Hope is gold. I called advocates in several States, visited the Long Beach Museum of Latin American Art, sat on the beach contemplating waves of God, ate simple but tasty homemade suppers, read books from wiser times and countries, had highly intelligent conversations with the homeless and the hopeless, and I got on to the next matriculation.

It is not perfect, but your pants weren’t always falling down, at least, and they let me use both pens and paintbrushes to self-regulate. It beat suicide.

Stress, Psychotropic Overdose, Cancer, Alzheimer’s, or What?

There is something wrong with my body. In April 2018, I had been struggling with family issues and the psychological disconnect between American education and American eugenics at my community college. In L.A. County, as in earlier forced American education of Navajos, students are actually encouraged to go into deep debt for the rest of their lives. We are encouraged to think that endless “insurance” payments are normal, universal private ownership of cars is necessary, mortgages are desirable, and that success is measured by how much you borrow. Fifteen percent of the student body at this city college of 35,000 are homeless. Money does not grow on trees, only food does and who grows fruit trees in an apartment?

I was also struggling physically. While studying in the college cafeteria, I experienced what felt like a fire down between the lobes of my brain. I made it to the bus stop and called a friend who got me an Uber home. The exhaustion is agonizing. I walk in a mind that feels like the burn of a dust storm. My eyes swell and sting or become recessed. I have lost the night vision in my right eye. My bones have begun to ache, and my muscles and skin are so sensitive it is hard to be touched.

With no empirical evidence, my primary care doctor concurred with the subjective opinion of another guy that I was “bipolar” — and that I should see a psychiatrist again, which I had done for thirty years with disastrous physical and emotional outcomes. I went to an Urgent Care. They took my blood pressure and sent me back to my PC who sent me to a “pulmonary specialist” to sell me a C-PAP (a breathing machine). The sleep study was normal. The doctor let it slip that according to my records my study had also been normal ten years before when they sold me my first C-PAP which I never used after trying to get it on a plane.

I went to another Urgent Care and then three emergency rooms, culminating in a desperate attempt to get a “Health Navigator” at Pacific Clinics. Six EMTs arrived with an ambulance and a gurney, shouting at me, insisting that I admit that I was suicidal, telling me I was wasting their time and resources. I walked the ten blocks to the hospital. I had come all that way to survive.*

I spent about eight hours in Area 54, a psychiatric hallway at Huntington Hospital, bullied by staff who had bruises and broken teeth. I watched as three men were locked into a glass enclosure and then taunted by staff into a frenzy, to be stormed by four staff, tied with white plastic ropes, drugged, and taken out on gurneys. I would have become violent myself had I not been rescued by a peer advocate.

In that time, “nurses” refused to give me water. They forced me to strip and put on a gown even though they had no intention of examining me. They confiscated my cell phone after I offered to document a visit by a social worker. She was intent on bullying me into a confession of suicidality (or not, I am still not sure). The medical labs included tests for cocaine, meth, marijuana, heroin, and three other drugs. They did not include ALT, AST, or ammonia levels for liver disease. They included no brain scan, MRI, or PET. They included no recommendation for further diagnosis. I was grateful to get home. I do not know where they took the other “clients.”

Evidence Base Even a Psychiatrist Might Consider, Off Grid

As a baby, I survived “RH Factor” with a blood transfusion, which may have caused my Hep C. Of course, the cause could also be some pocket of adventure but who’s to say, and who’s to care, unless you are a legal or medical professional with an investment in a private prison, mental ward, religion, or a pretty pharmaceutical salesman?

Since MediCal patients get to be the first to try experimental drugs, I was a research subject for Harvoni in 1997. It killed the virus, but 50% of my liver is cirrhotic. After finally changing from SCAN to L.A. CARE with a new PC, my hepatologist diagnosed hepatic encephalopathy, for which I have been on Xifaxan and Lactalose since March. If I lose 100 pounds (obesity supported in part by psychotropics), I can get on a transplant list, should I ever find a medical doctor I could trust with a knife. But my liver function is pretty good, considering. It had improved dramatically (Vitamin D, thyroid, liver function, glucose, and magnesium) after I had gotten off the psych meds completely. Platelets 105 now after six years.

Or maybe my abscessed tooth is leaking infection into my system. I tried to get it pulled in an emergency a few years ago, but I have long roots, low blood platelets, and no dental insurance other than MediCal. Dental insurance improved under Obama, but by now, the tooth has become a sculptural weapon; the bubble burst long ago. I have no pain, other than the shards of the tooth cutting into my lip. I have been to six dentists in this past year. I can get the tooth pulled if I apply for CareCredit and they find my credit is good. How does one apply for credit? After six months and repeated bloodwork, USC School of Dentists has offered to pull it. They will do no restoration.

And finally, my father died in August, at 91. I could not go to the funeral; I was in bed most of the time. My evangelical family largely shunned me; I am no longer evangelical, barely European enculturated perhaps — single, poor, poetic, and bisexual. I do not necessarily think these things are negative. I have rich friends; they have enough to share their poetry, their time, and their potato chips. But the death of my father raised up demons and relatives and shamans and guardians, and oh, yeah, the re-attention of the righteous wrath of my mother.

WordCraft Personal Design

Please Help, Dog! I am obviously still able to write. I finished my seventh or eighth book, The Last Run, in June 2019, typing on a Samsung for hours with my finger. It is exhausting to sit up, but I am, and I’m getting out some. By phone, Facebook, and ZOOM, I continue to advocate for people who have been “diagnosed,” abandoned to making collages in a CMHC (community mental health center) and then ostracized for that. My website and “business,” WordCraft Personal Design, is — like psychiatrists and attorneys at the bottom of the ocean — a good start.

I continue to go to psychotherapy every two weeks and Medicine Dance on Tuesdays. Medicine dance is movement meditation, the most effective therapy I have found for emotional regulation in trauma. Do not the teachings of Mahayana Buddhism, the best of the Blessing Way of the Dineh, and the General Theory of Relativity point out that there is no faith — no energy — without works, a physical movement? I have come to believe that both vocational training and dance integrate the body, the imagination, emotion, thought, and soul’s connection to the planets.

This is what WordCraft Personal Design is about: Teaching, free expression, growing or Being, doing, feeling. There can be no mental health without the ability of groups to survive in kinship and collaboration. Therapies which attempt to nurture humanity in people who have been traumatized since birth — who have developed chronic intermittent conditions — cannot be effective without some hands-on training in product and project to develop professional portfolios. (This includes computer literacy, damn it.)

Affirmation

In the past six months, I reaffirmed three solemn decisions: To live, to work, and to accept the healing proffered. I do believe in Somebody. An angel comes to check on me. I will not suicide; my people need me to be careful and kind enough to call when I can. I accept that I can slip into a coma tonight, and I am more than ready to go.

I have advocates in Hep C, Christian, Indigenous, Mental Health, and Buddhist healing. I attend All Saints Writers Group and “Unconditional Healing” at the Shambhala Center. I am paying for my amino acids, milk thistle, protein powder, multivitamins, and therapy on my own; I am consistently overdrawn. I had a social worker who made five visits, then quit for lack of funding from “medical insurance.” I have a skeptical medical doctor trying to be nice to this uneducated, deluded bipolar thing.

I have gotten on my feet, and am moving on: to advocacy groups, art venues, small business development and therapy. I am going to live every single last breath out as a survivor, an advocate, a poet, a writer** and a dancer. Dizzy. I do one thing a day. I look older than Kraepelin, and he’s been dead a minute longer than his 1922 German textbook.

Please, please help, Dog!

* Full Story is available as “Report to Pacific Clinics,” by Jane Engleman.

** WordCraft Personal Design,  www.wordcraftworkshop.com, and lulu.com/spotlight/wordcraft08. My most recent book, The Last Run, is still unpublished, but I’ll send a hand-stitched pdf if you ask for it. Next Books: Enemy Born of Me, novel of experience on the Checkerboard Rez, NW New Mexico. The Emergence Room, advocacy in mental health from an autobiographical perspective in L.A. County.