171. Contra todo pronóstico.

En la entrada anterior conocimos a Lisa Kanemoto, mujer que pudo conjurar sus fantasmas personales a través de una vocación tardía, la fotografía. Supimos de algunas de sus dificultades psicológicas y el sufrimiento derivado de la enfermedad mental de uno de sus seres queridos, su hijo David.


David enfermó de repente en los primeros años de una prometedora juventud llena de proyectos. Sus padres, como otros cientos de miles no supieron ni pudieron encajar el golpe, viviendo entre la negación del problema y la desesperación. Padecieron en soledad el sufrimiento de su amado hijo, a quien vieron cambiar desgraciadamente moldeado por la injusta enfermedad y los efectos secundarios de los fármacos destinados a contenerla.

Durante años, Lisa y su esposo, se sintieron abrumados por la soledad, la tristeza, la rabia, la impotencia y un atormentador sentimiento de culpa que machaconamente les confrontaba con el doloroso interrogante de qué era en lo que se habían equivocado o hecho mal (¡terribles sentimientos frente a los que las familias se sienten desamparadas!)

Lisa Kanemoto cuenta que su corazón está roto, pero que el dolor fue más llevadero a partir de contactar con una asociación de apoyo a enfermos mentales y sus familias. Su propio coraje, necesidad de superación y deseos de compartir su experiencia como mejor forma de ayuda a otras personas en una situación similar, le llevaron en 2005 a publicar un sentido ensayo fotográfico. “Against all odds” (Contra todo pronóstico) muestra abiertamente unas imágenes que bien por pudor, vergüenza o temor al rechazo secundario al estigma asociado a la enfermedad mental, pocas personas se han atrevido a divulgar de forma abierta. A diferencia de sus autorretratos en "Dark Mirror", creo que el trabajo no ha sido publicado en forma de libro, si bien si lo fue en su propia página de Internet. De ella entresaco algunas de las fotos y sus textos (en inglés, sorry) acompañantes y en ella se encuentra la colección completa de fotografías e historias personales que las acompañan.

When I am manic I am in heaven. I feel as if I am above all the games people play; as if televisions sense my thoughts and the way I look; as if radios specifically talk and sing to my own ears; and as if newspapers, books and magazines are written for me personally - like letters from a lover. I always want to believe that there is something else besides reality. I know that God exists, or did exist. I want to find him now.

David Kanemoto, Client.

I keep asking myself how can this happen to me? I have two children with schizophrenia. My son is in Napa State Hospital and my daughter lives in a board and care home. My husband died after being paralyzed for 20 years. I feel so alone and isolated. I no longer have friends. How could they understand? At General Hospital there is a support group for families of the mentally ill. There I am with people who understand.

Akiko Paltanowich, Parent.

Living in a small Japanese-speaking community where one’s identity is easily known, one needs courage to come out into the open and reveal having a child with mental illness. Mrs. Paltanowich is such a person. Courageous and dedicated, she has been fighting to improve the conditions of the mentally ill for years.

Michio Kusama, Ph.D., Counselor.

Dying of alcoholism, dressed in rags, I picked myself off a bench in New York City’s Thompson Square Park and came to San Francisco to recover. I had been in and out of the mental health care system and had attempted suicide. During my detox I suffered from severe paranoid delusions.

It is my believe that everybody is a poet and that poetry is a way to empower oneself to begin to heal. Poets have traditionally served in political office in Third World nations: why not in America? At times I have fantasies of some day becoming America’s first Poet Congressman.

Alan Kaufman, Client.

Anna Marinissen, Mae Bragen. Mothers sharing their heartaches and hopes, 1994 NAMI California Conference, San Francisco Airport Marriott.

I was seventeen when I first got ill. My diagnosis was schizophrenia. Later, because of my manic behavior it was changed to manic depression. There is no history of mental illness in our family, my twin sister is perfectly fine. My mother and the rest of the family are very supportive and watch out for me.

Altogether I had nine hospitalizations, it happens each time I get off the medications. The last time I was six months in a locked facility. I had been running in the streets in the Tenderloin hitting people for no reason.. The police took me in a paddy wagon to jail.

I have been in several different halfway houses where I learned to cook and prepare for independent living. Now I share a nice apartment with my younger brother.

Antoine Vaden, Client.

My cousin was mentally ill. He spent 30 years in an institution. My father was mentally ill and also institutionalized. In the monastery - years ago - we used to fast, often 4 months at a time. That was when I started to get black-out spells with no recollection what was happening to me for long periods of time. The fasting might have caused my hallucinations. A mentally ill person is part of God’s body as we all are. If society realized that, then they would treat the mentally ill with more love and respect.

Brother Bartholomew, Client.

My involvement with the Patients’ Rights and Independent Living movements has been a motivating factor in my life that has brought me hope, dignity and the opportunity to make a contribution to the quality of life of other people with psychiatric disabilities. I may never be "cured "or "normal " but I can and do live a full and satisfying life, contributing to my community in my own unique way.

Reverend Carol Patterson, Client.

Even when I was only four years old I felt there was something strange about me. My parents were always watching me anxiously whispering behind my back. They were concerned I was going to end up like Aunt Caroline who was institutionalized for insanity. I always felt strange and sad. I saw many school counselors, unsuccessfully I tried to fight my depression, this sadness, this fear to be locked up someday like my Aunt.

It happened when I was married. I became psychotic and my worst fear came true - a mental institution, Napa State Hospital. The illness became chronic. I lost my husband and all my friends. I am thankful to live in a co-op now. It helps with the isolation and aloneness that comes with mental illness.

Carolyn Mc Ginnes.

When I look back at my youth, I was always sad and crying. The breakdown came as a surprise and shock. I started to think it was some sort of punishment for something I did. When I was hospitalized I lost everything, including my home and possessions. It was incredibly sad when I had to give up my cats also. All of a sudden my whole life had changed. I had always been independent. Now I was totally dependent on other people for my livelihood. At this time I live in a family coop-household with 4 other women with psychiatric disabilities. When you are in the mental health system only, you live in a bubble. You are isolated. I have questions about my illness. Will I ever again be the person I was years ago?

Joi Kendricks, Client.

We visited my grandmother in a state hospital when I was five years old. I said "She is not crazy, she is a nice old lady." She was hyper-active, but her mind seemed clear. 18 years later I was in a state hospital myself, very high. It runs in the family. I am third generation with severe manic depression. In my first manic period I looked into the sun till the sun danced. I wrote a poem" Until The Sun Danced" and then built a concert on this experience. When I am depressed I have arguments with myself, feeling I have played music too long. It is rewarding for me to give concerts in state hospitals.

Lyle Taylor, Client.

A plea to the Governor. Family members and patients are decrying the Governor’s proposed cuts in state mental health funds!

Rally on the steps of the State Capitol in Sacramento.

Rally in front of City Hall in San Francisco, California.

Marvis Phillips, Client.

My ultimate goals in life, and they aren’t for all mentally ill people are to get out of mental health; live independently; and let go off medication if that will ever be possible.

Steve Walker, Client.

I am not diagnosed schizophrenic. I am emotionally disturbed. I have been experimenting with drugs, made suicide attempts and been in and out of hospitals. For the past four years I have been doing well with the help of medication and am now able to live in a Satellite apartment. I am thankful to Ian Adamson. He got me into the Mental Health system and looked after me and my family in time of crisis.

Ron Bell, Client.

Schizophrenia is a no fault brain disease. It destroys the productive lives of its victims, it breaks up families, it estranges friends, it shatters budgets and saving accounts, it raises taxes. It fills up more hospital beds than any five of the other major diseases that plague mankind combined. We should stop looking at schizophrenia as if it were contagious, it is not. We should stop expecting schizophrenics to manage their own affairs without guidance; they cannot. We should not think they are violent, because they are not. The most important thing that we can do, is to accept them as members of our society who need help.

Thelma Hayes, Parent.
Les Campbell, Parent.

For AMI members advocacy is more than dedication, it is passion - a fire fueled by the deep empathic pain we suffer along with our loved ones, who struggle heroically day after day with a brain disorder they did not cause, that cannot be prevented or cured, and is made more unbearable by neglect, stigma and discrimination of an uncaring society.

Terry Walker, Parent.

I am open about my illness. I cannot talk about my life without mentioning my illness. The most liberating experience was when I applied for a job. I took a deep breath and said "I was just released from a mental hospital, I am manic depressive". The clerk extended her hand and said "me too". To be accepted regardless of my diagnosis helps me feel better about myself.

Tonia Renee Richardson, Client.

Twenty years ago our son Ed, then fifteen, became mentally ill. This tragedy caused not only our son but also the rest of the family to come in contact with the community mental health system. Trying to get appropriate help from the system has been the most frustrating experience of our lives.

Tony and Fran Hoffman, Parents.

When a mentally ill person commits a crime they are treated almost like a well person. My son Seth was arrested for waving a gun and threatening an AA group. He was locked up at Santa Clara county jail for almost four months before he was transferred to a state hospital. Seth broke the law, but he is in no way a criminal. He must answer to the laws the way anyone of us do, but surely should be entitled to his right to being healed. The laws as they are do not in any way deal with the reality of the mentally ill. The criminal laws of this land do not know the mentally ill even exist.

Bob Swanson, Parent.

I lived in South America where I taught school and was happily married. After the birth of my daughter I was stricken with mental illness. I had to leave my husband and my child and come back to this country to get the right care. The support of my parents is invaluable. They stood by me during the years of my illness.

B.J. Pinto, Client.

Our beautiful and intelligent daughter spends days living in and out of reality because of what schizophrenia has brought her. With each episode the battle rages to bring her back to normalcy and get through these frightening stages. She lives with this terrible affliction of the brain, but we refuse to give up hope for a permanent stability and that the disease will no longer remain.

Love and support is what we have to give, someone to be there to share the fears with.

Pat and David Hatfield, Parents.


Todo un sentido homenaje a los afectados y sus familias, que siguen luchando por superar la enfermedad a la vez que encuentran su lugar en la sociedad.


BIBLIOGRAFIA.

Kanemoto, L. Dark mirror. Custom & Limited Editions. San Francisco, 1997. Parcialmente accesible aquí.

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Descargo de responsabilidad: He utilizado las imágenes sin ánimo de lucro, con un objetivo de investigación y estudio, en el marco del principio de uso razonable - sin embargo, estoy dispuesto a retirarlas en caso de cualquier infracción de las leyes de copyright.Disclaimer: I have used the images in a non for profit, scholarly interest, under the fair use principle - however, I am willing to remove them if there is any infringement of copyright laws.