12-10-13

Introduction

“When I consider the short duration of my life, swallowed up in the eternity before and after, the little space which I fill, and even can see -- engulfed in an infinite immensity of spaces of which I am ignorant and which know me not, I am frightened, and am astonished at being here rather than there, for there is no reason why here rather than there, why now rather than then. The eternal silence of these infinite spaces frightens me ...”
- Blaise Pascal -

I first conceived of this site as evidence of my mental illness and my extremely dysfunctional childhood, both secret and invisible to others yet so crippling for me. Initially I sought to prove that beneath a normal façade I have been sick, frightened and alone most of my life; I wanted to know how many others were out there. I found I was far from alone.

I wish to make it clear, this was not created to blame my parents for my illness, but to understand the interaction between us that helped create who I am.

In reconstructing my past, I see significant changes, significant improvements, that have slowly evolved over time with proper medications and appropriate therapy. I want to say what I never thought I would say years ago; there is hope, there is reason to continue the fight. Depersonalization, depression, and anxiety are (in my opinion, in my case) neurological illnesses that can be treated or cured. There may be no cure for me in my lifetime, but neurobiology and medicine have made such great strides in just the last five years of the 20th Century there is great reason for hope. At minimum a greatly improved quality of life is within reach for those receiving appropriate neuropsychiatric treatment especially with early intervention and proper coping skills.

I see this site as helping me process the past and acknowledge the subtle but very real improvements I am experiencing. I am finally internalizing both the good and the bad of my childhood, as well as accepting that I am mentally ill, coping with a neurological disorder no different from any other physical illness. I am accepting my limitations and working around them. I finally see my parents as being both positive and negative influences. I hope to find compassion in seeing they were mentally ill themselves. And I am seeing there is no shame in being mentally ill, it is not "weakness of character," and should be regarded as a physical illness like any other. The stigma of mental illness must come to an end.

I have included many photographs on this site. I want to give mental illness a face, to show that anyone can be mentally ill and "look perfectly normal." When depersonalized one can laugh and be experiencing tremendous fear and emptiness. Paradoxically one can cry and still feel "numb" or "dead." One can fear insanity and have a perfectly intact sense of reality. There are many brave people I have met over the years who suffer daily from all forms of mental illness, from depression to anxiety to OCD to schizophrenia, and no one around them would ever know what they are going through. Such is the complexity of mental illness and of our brains.

And this is not only about the evolution of a mental illness but the evolution of acceptance and recovery. I hope this site is of help to others. This is a place to find you are not alone and that there is hope for all of us.

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Mental Illness Is A Medical Disorder
(Regardless Of How It Was Precipitated)


I have been asked many times (and my response does anger some people) if I would prefer having any other illness in exchange for being mentally ill. I respond with an emphatic "Yes -- any other illness -- even cancer, if I were allowed to live only one year with a healthy brain, a healthy mind."
This is only my personal opinion. I am not saying that physical suffering of any kind is any less horrifying or painful -- no one deserves to suffer, ever. Unfortunately this is the nature of our lives and ultimately we die -- alone.

Mother with Alzheimer's.
However, there is a crucial difference in suffering from a mental versus a physical disability, and God help someone who might suffer both. One may live with the horror of paraplegia and may very well contemplate death as an escape from such misery. But it is my contention that if one has a healthy mind, one might be able to see alternatives, positive ways of coping. Someone with a physical illness has the potential to "pull him/herself up by the bootstraps" as those "bootstraps" are the blessing of a healthy mind, a healthy Self.

I have heard from medical professionals, nurses in particular, that physically ill patients say they would trade their disease for any other. Perhaps the key point here is that mental illness is a crippling and frightening neurological disease, a biological illness, a physical illness as well, and mental illness can be as disabling, frightening, or as lethal as incurable cancer if one is unable to cope.

Me with Dad four years before his death.

It is ironic that my mother, once a successful medical doctor and psychiatrist, lost her Self completely and forever to Alzheimer's -- another cruel neurological illness. She passed away unexpectedly on September 12, 2001 after living under constant care for nearly ten years in a nursing home.
I doubt she and I could have resolved any of our conflicts and I regret I will never fully understand what caused her, her entire life, to be so full of rage at the world. I am still processing her passing and will do so the rest of my life.

My father and I did have time (several months in his eighties) to talk as openly as possible about the past -- to clear up some confusion and understand where things went wrong. I began to comprehend the magnitude of his own battle with mental illness -- Hoarder/Clutterer Social Anxiety, and Depression -- which made his career as a surgeon a struggle it needn't have been. Had he received the treatment available today for these disorders, he would have been a far less tortured human being ashamed of his "failures and shortcomings." I am forever grateful for having that brief time to understand him better and to say goodbye.

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Clinical Definition of Depersonalization/Derealization Disorder
DSM-5™, American Psychiatric Association, 2013


1. “Persistent or recurrent episodes of feeling detached from,
and as if one is an outside observer of, one's mental
proceses or body (e.g. feeling like one is in a dream.)

2. During the Depersonalization experience, reality testing
remains intact.

3. The Depersonalization causes clinically significant distress or
impairment in social, occupational, or other important areas
of functioning.

4. The Depersonalization experience does not occur exclusively
during the course of another mental disorder, such as
Schizophrenia, Panic Disorder, Acute Distress Disorder, and
is not due to the direct physiological effects of a substance
(e.g. a drug of abuse, a medication) or a general medical
condition e.g. temporal lobe epilepsy).”

_____________________________
The Diagnostic and Statistical Manual of Mental Disorders is now in its Fifth Edition. The DSM-IV was published in 1994. The DSM-5 was released May 2013.
Some significant changes have been made to the category of Dissociative Disorders and to the definition of Depersonalization Disorder.

“Major changes in dissociative disorders in DSM-5 include the following:

1) derealization is included in the name and symptom structure of what previously was called depersonalization disorder and is
now called depersonalization/derealization disorder

2) dissociative fugue is now a specifier of dissociative amnesia rather than a separate diagnosis, and

3) the criteria for dissociative identity disorder have been changed to indicate that symptoms of disruption of identity may be reported as well as observed, and that gaps in the recall of events may occur for everyday and not just traumatic events.”

See the DSM-5 Website (here) for further information.

See the The Merck Manual of Diagnosis and Therapy
Definition of Depersonalization
here.


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Progressive DP Onset Since Early Childhood

I don't find it unusual that my first DP experiences seem to have occurred when I was traveling. Time changes and unfamiliar places still exacerbate my DP to this day. These are stressors or traumas to the brain, especially the sleep-deprivation that often accompanies travel. It is common for the population-at-large to experience fleeting, not chronic episodes of DP when sleep-deprived.

My parents both loved to go abroad and had traveled extensively during the two years before I was born. My father considered travel relaxing and educational. My mother on the other hand made any trip a military exercise; there were too many things to see and one was "a lazy fool" not to take in every sight possible. It didn't matter who traveled with my mother, he or she was guaranteed to return in an agitated state.

The screaming travelers. Mom and me.


I took many trips with both of my parents as a very young girl, most notably a to Mexico when I was about four years old. I wasn't able to sleep well or eat on airplanes and often suffered terrible ear pain. I was even afraid to use the toilet as I was certain I'd get sucked out of the plane when I flushed. My mother's response to all of this was that I was "making a fuss over nothing." "You don't want to eat, don't eat then. Don't complain about it if you're hungry later."

When we arrived in Mexico I felt I was going to pass out. I saw stars, felt nauseated, faint, mentally confused and disoriented. I specifically recall my father's concern and only his efforts to comfort me. He found a restaurant that served pancakes and orange juice at all hours -- comfort food to this day. I have fleeting memories of feeling odd the entire trip. At some point I literally hallucinated my cat, Hatse, under a chair in our hotel room. I reached out for her and she disappeared. I was overwhelmed with great sadness, a painful desire to go home, and a pervasive sense of fear. There was more arguing than laugher on that trip, as usual.

Once my father became persona non grata at home, I became my mother's travel companion, her baggage handler, her "husband," and her verbal punching bag if things didn't go exactly as planned. Again travel was a lesson in discipline, in stoicism -- no time to relax. "You will see the Mona Lisa if it kills you!" Without my father as a buffer, the most potentially wonderful adventures became biannual jaunts to foreign boot-camps.

I am thrilled I have been to virtually every continent on earth; it is true I have had every advantage in my life -- every enriching experience -- cultural, educational, and social. Yet all of these things are meaningless as I never felt truly loved or accepted by my parents and was basically despised by my mother for being so "unlike her," so much "my father's daughter" -- a "lazy ne'er-do-well."

I believe I can pinpoint my first lengthy DP thoughts and feelings to a trip my mother and I took on our own to Tobago when I was around five years old. I was always left to my own devices to explore hotels and their grounds and would frequent gift shops, information desks, crash parties and dance to the amusement of the guests or find the rare youngster to play with. I was frequently left alone to entertain myself as soon as I was capable of doing so.

With a lion cub at the Berlin Zoo.

One evening I purchased a book on Dracula in the Hotel gift shop that had a disturbing illustration on the cover that initially fascinated me then gradually began to terrify me. I sat staring at that hideous image and became increasingly anxious and frightened. I recall leaving the hotel room in a panic and flying down a plush spiral staircase into the lobby. My mother was chatting there with another woman. When I interrupted her to tell her I was petrified, she shooed me away; "Don't be ridiculous, it's just a picture, you're not scared of that are you? Can't you see I'm having a visit here with Mrs. X?"

My mother frequently denied the veracity or very existence of my emotions. Her usual reaction to any emotion was I "wasn't really feeling that way" I was just "acting" or "looking for sympathy or coddling." Early on I began to lose touch with my true feelings and to this day have difficulty sometimes connecting emotion to experience; I am sometimes doubtful of how to respond emotionally in various situations. My reactions can be greatly exaggerated. My sadness is overwhelming, my rage extreme, my anxiety crippling. Even joy is self-conscious, less spontaneous and often forced.
Plumping up dinner. Expo '67, Montreal.
A few days after the Dracula incident, my mother came down with some mysterious tropical malaise. She "felt miserable, had a fever, and there were 'all sorts of red dots in her very sore throat'." She lay on her bed and I on mine. I grew increasingly certain that she would die. When I mentioned this serious concern she remarked, "If you are afraid I'm going to die, you must want me to die. Just leave me alone!"

Here Freud was again unceremoniously exhumed and thrown in my face; my mother's theories changed regularly and randomly from psychoanalytic to neurobiological.

Afraid to disturb her I turned towards the blank wall by my bed and began to focus intensely on my body. I began to think, "Who am I? What am I? What is this lump of flesh laying here? Why am I here? What is it to be alive, what is it to be dead?" These extreme existential thoughts took on a life of their own and manifested themselves as a physical sensation -- a perceptual shift.

Misery in Egypt.  No more trips with my Mother.

I felt I was merely a thought. My body was merely a vessel containing the illusion of life, of the world, of the universe, all existence.

At the time none of these thoughts or feelings were frightening to me and I could "shake myself" out of the trance. But here was the beginning of the vicious cycle of over-introspection, over self-consciousness, and the physical manifestation of pure existential thought, that would return to haunt me on and off throughout my youth and ultimately envelop me as an adult.

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