Editor’s Note: The following are the first two of a series of personal appeals that Los Angeles-based writer and artist Jane Engleman wrote to her doctors earlier this year about the state of her physical and mental health and her philosophy of healing. The letters will be published over several weeks.
The first letter, to an academic medical center neurologist, refers to her diagnosis of hepatic encephalopathy, a condition that causes temporary worsening of brain function in people with advanced liver disease and, in Jane’s case, intense irritability and exhaustion for the past two years. She is requesting to be tested to determine whether she can become a candidate for a recommended liver transplant.
The second letter, to the medical center’s transplant psychiatrist, is self-explanatory. To date, communication has been unsuccessful. She told Mad in America, “The European-American community seems to concur that I will not survive long without the transplant, yet they are reluctant to move forward based on stigmatizing records kept forever by the Department of Mental Health in L.A. County ….I am not afraid of death. I am only afraid of not cuddling every moment with Life.”
September 14, 2020
To Dr. Elizabeth Joe, Neurologist
Keck Medicine of USC
I am filled with anxiety about the medical profession. My friends tell me that I am a totally different person when confronted by a doctor, a nurse or a social worker. I become terrified and combative when I am so afraid. Today, I am attempting to begin a bridge so that you will not be afraid of me and I will not be afraid of you.
At this time, I cannot provide the private information for a neurology exam at Keck USC to determine:
- An empirical cause for fatigue and weakness which I have endured since April of 2018.
- If this fatigue is caused by liver disease, Vitamin B deficiency, hormonal imbalance, a brain injury caused when I fell as a child, or prolonged overdoses of Seroquel?
- The prognosis of a team of European-American medical experts if I am refused the transplant. I will continue to live fully with whatever scientific determination is made.
I have experienced only unsafety in sharing personal information. I would never come to you again if I did not believe in the singular ability of science to provide numbers, without personal judgment and statistics of failure. My liver is cirrhotic. I am suffering an illness for which you may have a key. Will you help me with that research?
I continue to function beautifully, in spite of the need for frequent, intensive periods of rest. I am doing far better than others in this time of global crisis. I attribute this to:
- Careful nutrition, and the emotional and artistic support of physical dance meditation,
- My belief in full recovery of suffering through intensive healing by experts trained in techniques not yet in collaboration with those in European-American medicine,
- Friendship with a Creator inaccessible through numbers and measurements (if you ignore Einstein),
- The reasoned nurturing of friends, and weekly regulation with an intelligent, caring European-American therapist,
- The comforting exploration of my native strength for the past two years virtually outside the low opinions of doctors,
- My studies in literature, poetry, physics, history, and art to encourage my students (psychiatric survivors) to full professionalism in a diverse society.
I have a series of psychiatric diagnoses, begun in 1988 and perpetuated on to recent “medical” care. These are not based on culture, or in the insight I have found in intensive therapy and the study of the human equation in history.
I am overwhelmed with the consequences of a fifteen-minute billed assessment on a multiple-choice form. When a doctor doubts my recovery won over sixty-one years of therapy, dismissing my understanding of my own body, and when I am bullied by disinterested people paid to care, my recovery is threatened. At these times, the images in my mind turn to the violence and neglect when I was not well-fed, not cared for, and not rescued.
For twenty-five years, I trusted medical professionals. I was completely submissive. When I began that process, I had been in trauma for a very long time. I thought I was done. When human bodies freeze, their minds freeze with it. Humans can be thawed with kindness and then physically coached to manage survival skills developed in the dark. Specialized training takes effort, but it is not hopeless. Coaching to competitiveness does not require twenty-five years.
Recovery was marketed to us at great expense by the County, but no physical training was ever provided for intermittent, chronic conditions caused by severe prolonged violence, neglect, and cultural oppression. Treatment consisted of psychiatric drugging, sitting in groups reading aloud about money management (coupons), relationships (wear protection), music (listening to CDs) and creativity (collage). People surviving trauma can learn to use their bodies again in finishing products and projects.
Mental health is simply not in the County curriculum. Most of my colleagues remain unemployed with 90% of those who enter community mental health. Two close friends killed themselves after years in this half-hearted behavior modification. Others remain in a compliant stupor in Section 8 housing, board and cares, or have chosen to live on the street in lieu of bullying. According some statisticians, this failure is attributed to the genetics of patients.
This is so unnecessary. For the past seven years, I have begun to build a life for myself in contribution to my colleagues. I intend to live out my remaining years, whether a day or a decade, to seek help from the helpful when I am in human crisis, and to enjoy and re-create the joy I have found in dance and poetry.
October 10, 2020
To Dr. Stephanie Cho, Psychiatrist
Keck Medicine of USC
To Whom It May Concern:
It is hard to reduce patient letters to a dot plot or a billing code. I ask that you try. I ask that you include these letters as part of my medical records. I recently sent a letter to Dr. Elizabeth Joe, Neurology, in an attempt to bridge the widening gap between the medical community and my sixty-one years of the experiential study of health. Why is that document not included in my chart? Am I part of the perspective, or am I simply a mechanical toy which you intend to take apart and screw back together? I struggle as to how to talk to you guys, and there can be no progress without communication. If I cannot talk to my doctor about unwellness, where else do you suggest I go?
Today I am sending a second letter. I am gravely mentally ill, consternated, in pain at the treatment suffered by myself and my community. My voice is a little raspy under stress. Sometimes we write about what we wish, sometimes what we think. About .002576% of the time, according to statistics, we write about what we know. But we can always, always write questions. We can find answers together.
After a complete blood transfusion, my survival story began as a baby in a mission dorm of little girls on the Navajo Reservation. I have since had all kinds of questions, and a desperate need to find my voice in the American competition of culture. Maybe you think I am grandstanding. I am not grandstanding, I am screaming from a darkness, a darkness which we share, a darkness so deep that if we do not collectively find creative ways to get our voices to the surface, none of us may survive. Every war we survive is worse than the last one. And every renaissance we create is more brilliant.
Cultures – and religions and ways we teach each other – are all telescopes into a vast wild, dangerous and exciting. We see so much from our tiny lenses that we begin to think we’ve seen everything. But have we? What good is it to finally access the surface of Saturn, only to lose the New World to a tiny half-Life/half-Nonlife, unemotional matter in the lungs of a Chinese bat? And if this County should collapse in civil war, will we transmit that unemotional matter to a new colony on Saturn? It takes a very large array of a myriad of instruments to put the pieces of a Puzzle together. When I heal, you will begin to heal.
I have thrashed about, flashing out in ignorance and the same emotional dysfunction shown to me by “health” professionals in L.A. County. I suppose explosion or freeze are natural chemical reactions to the unknown when we have experienced so much violence. But I think I can change. Others have shown the blend of the chemistry needed to be happy. It includes love and temperance.
Being happy is an imperative. The goal of every human being has to be to not live in sin, trauma, and suffering but to share in the love and the joy of the Creator. Joseph Campbell says to “follow your bliss.” Fred Sugerman teaches, “Seek comfort: Stretch, move, soften, do what feels good.” Christ said, “Love your neighbor as much as you love yourself.” These are not kind suggestions, but mandates to find our native health and resilience. If we do not find our softening, we are unhappy people transmitting the virus of fear, hatred, and anxiety; we close down the channels of flow in the body, in the community and in the air of the planet. There are times we are lost in sickness, uncomfortable, battered. We find the cure in the light of stars, and in the eyes of each other.
I am asking you to stop for a break. I am asking for a chat, in the only language I speak, that is, poetry and writing and art. I hope that we can have a sharing of your perspectives of science with my sixty-one years of experiential study of scar tissue. If this wound does not close, I may die. Death is immaterial to me; I have done it many times. But I am sick of going to funerals of friends, sick of violence, exhausted with battering and killing. I am sick of suicide. How do we encourage each other to want to live? How do we speak, how do we serve the wine, how do we taste a nourishment so exquisite that we will want to linger a moment before the next performance? And how will our next performance orient ourselves and our children again toward the dawn?
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.