Oliver Sacks Says Farewell

I am very sad to hear that one of my heroes, Dr. Oliver Sacks, has terminal cancer. The following article is a deeply moving announcement of his impending death; his eloquent words speak for themselves. He has lived a rich full life, and will continue to do so until the very end which may come in only a few months.

His rich legacy will stay with us forever, and his lifetime of knowledge continues to enhance our understanding of the human brain. He is a neurologist who cares deeply for his patients, and has been open about his own struggles with an inability to recognize faces, migraines and other conditions.

I consider his book
The Man Who Mistook His Wife For a Hat required reading for everyone. Other favorites of mind are Awakenings, An Anthropologist on Mars, Musicophilia, and Hallucinations. His second memoir is due to be released in a few months as well.

I also highly recommend the film version of
Awakenings featuring the Robert de Niro and the late Robin Williams.

I was extremely fortunate to have attended one of his lectures in Los Angeles in the 1990s on the artwork of brain damaged individuals. Seeing him in real life only reaffirmed my belief that he is a kind soul and dedicated physician.

Thank you doctor Sacks, and Godspeed.

"There will be no one like us when we are gone, but then there is no one like anyone else, ever. When people die, they cannot be replaced. They leave holes that cannot be filled, for it is the fate — the genetic and neural fate — of every human being to be a unique individual, to find his own path, to live his own life, to die his own death." - Oliver Sacks -

Read the full article in the New York Times HERE.

My Own Life
Oliver Sacks on Learning He Has Terminal Cancer

A Dream Deferred

I was never able to pursue my earliest dreams. I loved the Arts -- music, theatre, dance, fine art, and film. I was inspired to be a part of the entertainment industry in many ways and film was pure magic that seemed to pull all of these things together and preserve them forever.

This clip from a Truffaut film makes me very nostalgic for that which can never be.

"Le Cinema Règne" (Cinema Rules) is how Truffaut describes the feeling when everything falls into place during filming. I have known this feeling; I have experienced it acting in plays, singing in a Master Chorale, performing a dance, and indeed working in film production.

I realize I have other gifts to offer the world, but it is frustrating to never know what could have been if I had not been fighting with a brain disorder. I don’t ask for sympathy. I only ask for understanding.

I have now found another voice, in my advocacy; perhaps that was always my destiny.


"Alone" by Edgar Allan Poe

From childhood's hour I have not been
As others were; I have not seen
As others saw; I could not bring
My passions from a common spring.
From the same source I have not taken
My sorrow; I could not awaken
My heart to joy at the same tone;
And all I loved, I loved alone.
Then- in my childhood, in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still:
From the torrent, or the fountain,
From the red cliff of the mountain,
From the sun that round me rolled
In its autumn tint of gold,
From the lightning in the sky
As it passed me flying by,
From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view.

Why Do I Talk So Openly? - I Have To

As Simi Lichtman, (Associate Editor, New Voices Magazine) so eloquently states:

Mental Health Patients: Ending Stigma Must Come From Us

"I don't think everyone needs to publicize their disorders; I believe that many people need their privacy for reasons other than fear of stigmatization. But to hide it completely is to give in to the stigma and encourage its continuation. We need to be honest about our conditions with ourselves and others if we want others to stop judging us. Once we as patients are able to speak about our illnesses candidly, we can place the pressure on the rest of the world to accept us openly; until then, we cannot expect more of others than we are willing to offer ourselves."

We really have no choice, and I don’t think that’s a bad thing. To read the full article in the Huffington Post, CLICK HERE. <-------------

Just Be ...

woolfsparkle1

Oliver Sacks' New Book "Hallucinations"

I am always fascinated by neurologist Oliver Sacks’ observations on the complexities of the brain. His new book, coming out November 6, 2012, promises to give us yet further insight into “oddities” which help us understand “normalities.”
As usual, my faith in understanding mental illness often rests in the study of neurology. I believe that psychiatry will one day be subsumed under neurology.
This does not mean that therapy of all kinds from talk therapy to CBT and more will be any less critical. Mental illness requires a holistic approach as does any medical disorder.

Seeing Things? Hearing Things? Many of Us Do
Published: November 3, 2012
The New York Times

A small sample:
“WHILE many people with schizophrenia do hear voices at certain times in their lives, the inverse is not true: most people who hear voices (as much as 10 percent of the population) are not mentally ill. For them, hearing voices is a normal mode of experience.
My patients tell me about their hallucinations because I am open to hearing about them, because they know me and trust that I can usually run down the cause of their hallucinations. For the most part, these experiences are unthreatening and, once accommodated, even mildly diverting.”

Read more at:

Projection of Abuse

Tearful Rags Andrea
I recently made a major move to a new home. In the process I came across these two old friends of mine -- Rags Andrea and Tet Bear (yes “Tet.”) I was not interested in dolls as a child but I anthropomorphized stuffed animals; Rags was the exception. What I found striking is I had drawn tears on Rags’ face. She is also stained with my own tears. It is so obvious I was projecting my sadness onto her. I did this with my pet dog as well; I treated her poorly, yelled at her, then asked her forgiveness.

My mother (the amazing seamstress) made Rags’ new dress -- the old one had literally disintegrated. I have no recollection of my mother making a single comment to me re: why Rags’ was crying. It also seems I put a happy face on her; why I don’t know. I suppose it reflects the dual nature of my survival instinct -- deep sadness and fear combined with a “happy” exterior -- the false face which was safer to project in my mother’s presense.

I also had a dollhouse, but it was likewise inhabited by animals. A small mouse was the matriarch of the family, but she was not married. She had a live-in companion.

Children are far more observant than adults give them credit for. Read More...

What NOT To Say To Someone With A Brain Disorder

Here we are in the 21st Century and I am still astonished by the lack of knowledge about brain disorders.

I have a plenty of pet peeves about ignorance and stigma, but one of the worst things anyone can do/say to someone with any mental disorder is to deny the veracity of that person's feelings -- real, normal everyday feelings we ALL experience such as sadness, joy, fear, anxiety, discomfort, et al.

If someone with clinical depression (and NO that is not “the blues”) has just lost a much loved pet and is grieving, you don't say, "Oh, that's just your depression, you're over reacting, it's only a dog."

This is something my mother would often do; if I expressed sadness at the end of a summer at camp where I grew to love my new friends, she would tell me "you're acting, it can't be that bad, they’ll forget about you in a week.” Or worse, if I got enraged by her gaslighting or lies she would tell me I was "crazy" or “hysterical” though of course she didn't assist in getting me help for my "craziness.” Oh wait! I was actually “acting!”

ANNOUNCEMENT: FYI to anyone who doesn't know. Someone with a mental illness or brain disorder can actually have normal feelings. It is one of the most painful things to not be taken seriously because one has been open about his or her illness. That should NEVER be used as a weapon or even a defense for unacceptable actions…

This is yet another reason why extremely high functioning individuals who have a mental illness do not reveal it for DECADES. If no one knows they have bipolar or even schizophrenia, well, they're "OK to be with." Often if the illness is revealed (after years of secrecy) an individual will lose friends or be observed differently, even thought he/she is exactly the same individual and has never exhibited “crazy” behavior in front of these same individuals. After the point of revelation a switch is flipped and one is no longer trusted to be a good friend, a co-worker, or even an employee. (Review the story of Elyn Saks.)

Would you doubt a cancer patient who is upset over the loss of a limb, or a loss of libido due to chemotherapy? He is upset. Of course, you accept he is upset as he is a human being with cancer. Somehow as usual, individuals with mental illness aren't "regular" human beings. All "real" illnesses count. I suppose neurology isn't much of a science at all is it?

I have had breast cancer, and though the experience is horrible, I have dealt with it better than the misery of depression and DP/DR and anxiety; I would have a far better attitude towards it WITH A HEALTHY BRAIN.

A few years ago I was foolishly charmed by a man who bowled me over with his affections -- and note I mention I was a FOOL, I'll cop to that, and I am also entitled to being a fool, even though I have a brain disorder. I was needy, I wanted his attention (quite a common situation). Initially it felt wonderful. But he was also abusive at times and quite ignorant about my illness despite having read this site, and despite the fact that his own child has a mental illness -- that is truly sad. He would “forget” I had my own issues as “I looked so normal.” I couldn’t win for losing.

I found out this man was getting remarried and literally contacted me only a few weeks before his wedding, and slowly revealed the truth. When I was angry about what he called his being sometimes "less than truthful" (!!!!! -- note he “isn’t a liar") he told me, on the phone, "I can't talk with you now. You're having one of your episodes."

So in other words, my anger and sadness that he was married was due to my depression, anxiety and DP/DR. Not a genuine rage at his endless lying and cruelty.

More recently I was in a very awkward situation where I was forced to express my discomfort with a friend's uncleanly home. Odors from her home were being transferred to mine (via her car and clothing) and it was becoming unacceptable. I was horrified at having to bring this up and tortured myself about it and assumed it would mean the end of the friendship. I consulted my therapist who said I had to tell her. I scoured the internet for advice, proposed hypothetical solutions to friends who did not know this person, and found the only answer was to confront the individual with honesty and live with the consequences. I had that right.

When I confronted this friend, she said, "Oh, I didn't know … I think we can work on this. Of course I know you have some OCD tendencies … some of this is probably 'real' and some of it is probably 'mental' on your part."

So came the demise of that friendship which is a shame.

But no one, not one of you who has a brain disorder -- anxiety, depression, bipolar, schizophrenia, DP/DR, OCD -- need APOLOGIZE for your illness. And if someone ever tells you a REAL feeling is related to your "mental disorder" and is "exaggerated" or your feelings may be "part real, part imagined" that is your cue to walk away. That is now my cue to walk away. It's taken me 50 years to figure that one out. Better late than never!

I had to get that off my chest. All identities have been changed to protect "the innocent." And I REALLY feel this way; I am not having an episode, it is not due to my brain disorder -- I am ticked off. Thank you for listening.

PS this was written in anger, legitimate anger. My spellcheck isn’t working. Excuse errors! Those are not due to my mental state either! Oh, and I look perfectly fine as well.

Consciousness in All Animals

As Depersonalization and Derealization involve an excessive focus on the consciousness of who we are, on The Self, on existential thoughts, perceptual distortions, and a hideous angst over the purpose of our lives, I found this article somewhat comforting. I have had many animal companions in my life, cats and dogs, and would swear they have a degree of sensitivity or “awareness” of one’s mood, a sense of joy or fun, and mischief -- endless and humorous “malice aforethought.” They have made me smile, brought me moments of joy and peace I often can find nowhere else.

Having recently lost my Lab Mix, Miss Gracie, I miss how she could always sense my dark days. She and my Border Terrier would come to my side when I was crying or frightened. And now my terrier misses his canine friend of 14 years. He looks for her. They were indeed “best friends” -- there is no other way to describe it. And now, my terrier has become closer to our cat; they sleep together, they both sit on the porch next to each other in the sun as they did when Gracie was here. A terrier friending a cat is most unusual, especially when he used to chase her endlessly and mercilessly for sport.

I thought again why the concept of a psychiatric service dog should be accepted as a legitimate companion for many with mental illness, just as a leader dog is of such value to one who is blind or otherwise physically disabled. (See my link to the Psychiatric Service Dog organization.)

Here is a wonderful article on consciousness by Christof Koch, Chief scientific officer, Allen Institute of Brain Science. I provide a sample. Please check out the link HERE to read the full article.

Consciousness Is Everywhere
Posted: 08/15/2012 3:48 pm - The Huffington Post
Christof Koch, Chief scientific officer, Allen Institute of Brain Science

“Perhaps the most surprising insight that has come out of the past 20 years of scholarly investigation into the nature of consciousness is that it might be far more widely shared among all of nature's children than most of us think. By consciousness I mean the ability to feel something, anything -- whether it's the sensation of an azure-blue sky, a tooth ache, being sad, or worrying about the deadline two weeks from now. Indeed, it may be possible that all animals share some minimal amount of sentience with people, that all animals have some feelings, however primitive.”

The Worst Illness? Yes.

“I think mental illness is the worst of anything. The hierarchy of suffering is sort of bound into our society. But my personal experience is that the isolation and anguish of severe mental illness was much worse than…having something physical that people could understand better.”
~ Bobby Baker ~

I couldn't agree more ...

Yes, this is how I feel today ...

Self Exposure

A friend sent me a wonderful quotation today, and it speaks to what I am trying to do with this site. I do this for others, but I also do it for “selfish” reasons .... Read More...

"Shine On You Crazy Diamond"

We must all fight the good fight ... we must all shine like crazy diamonds ... Read More...

Will "Mad Pride" Add to Stigma?

Here is an article on “Mad Pride” and the battle to define “normality” continues. Personally, I do not wish to have any problems with my brain. And yes, I am creative and always have been. In my case, I do not feel that medications have stifled my creativity -- my illness has. Medications and therapy have helped, but I am not cured. But I am alive today because of my medications -- and I am not exaggerating. It’s difficult engaging in this debate as I have “neurotic” symptoms, not psychotic. I would never claim to know what it feels like to walk in someone else’s shoes, and I do understand that certain medications do cause individuals to feel like zombies or worse.

Listening to Madness:
Why some mentally ill patients are rejecting their medication and making the case for 'mad pride.'

By Alissa Quart | NEWSWEEK
Published May 2, 2009
From the magazine issue dated May 18, 2009

“We don't want to be normal," Will Hall tells me. The 43-year-old has been diagnosed as schizophrenic, and doctors have prescribed antipsychotic medication for him. But Hall would rather value his mentally extreme states than try to suppress them, so he doesn't take his meds. Instead, he practices yoga and avoids coffee and sugar. He is delicate and thin, with dark plum polish on his fingernails and black fashion sneakers on his feet, his half Native American ancestry evident in his dark hair and dark eyes. Cultivated and charismatic, he is also unusually energetic, so much so that he seems to be vibrating even when sitting still.

I met Hall one night at the offices of the Icarus Project in Manhattan. He became a leader of the group—a "mad pride" collective—in 2005 as a way to promote the idea that mental-health diagnoses like bipolar disorder are "dangerous gifts" rather than illnesses. While we talked, members of the group—Icaristas, as they call themselves—scurried around in the purple-painted office, collating mad-pride fliers. Hall explained how the medical establishment has for too long relied heavily on medication and repression of behavior of those deemed "not normal." Icarus and groups like it are challenging the science that psychiatry says is on its side. Hall believes that psychiatrists are prone to making arbitrary distinctions between "crazy" and "healthy," and to using medication as tranquilizers.

Read the entire article HERE:

When Does DP Become a Disorder?

I have thought about this long and hard over the years, and for me it has essentially been 50 years ... Disclaimer: do not take the chronicity of my problems as your fate!
One day at a time.

My DP and DR have changed over time. I attribute that to everything from the deaths of my parents (1990 and 2001-- both abusive and absent), therapy, medications, distractions of all kinds (from university courses), to hobbies, to work to volunteering.

I also have GAD I now know I had ... probably since I was born. I also had panic attacks which have DP/DR as a secondary symptom. These days, I have a lot of anticipatory anxiety without an increase in my "daily" DP/DR. Very odd. In the past I anticipated DP/DR and that brought on anticipatory anxiety OF the DP/DR. When I have horrible DP/DR THAT is the focus of my attention. I have TERROR, not anxiety.

At any rate, I would say in the majority of psychiatric DP/DR, the symptom is indeed secondary. But a secondary symptom can BECOME CHRONIC as in my case. Again, research at the IoP would indicate ... as I interpret it ... that "Depersonalization Disorder" is rare. The description in the DSM-IV is incomplete and misleading. I hope to God they get a better definition in the new DSM in 2014.

And clearly, each case is unique. Every single case here [on my DP support board] includes more than just DP/DR. If DP/DR were the ONLY symptoms per the DSM, it would be true Depersonalization Disorder. Many here have noted over the years they recall being anxious on some level before the DP hit. Or they were under stress. Or they had a bad drug trip that included panic and anxiety.

I have not had a HORRIBLE DP/DR experience in about 5 years. Now my anxiety is high as it was when I was a teen.

DP/DR, IMHO, becomes a CHRONIC SECONDARY SYMPTOM in many situations -- not necessarily a DISORDER which would be "pure" (and that definition is ridiculous save in neurological cases, IMHO), and it depends on so many factors to reduce the symptom. Pure DP/DR is described in neurological disorders more frequently, and in taking antibiotics and in Lyme Disease. Epilepsy auras as well.

Meantime, fight the good fight! As best you can, in any way that helps.

"Hardly a New Disorder"

I wish people would understand that DP and DR are perceptual distortions that are not a “fad.” This disorder is nothing new and dissociation has existed for thousands of years. However, it is infinitely difficult to describe unless perhaps one equates this with negative recreational drug trips or drugs meant to achieve “spiritual awakenings.”

"The word depersonalization itself, in a diagnostic sense, refers to both a symptom and a full-blown psychiatric disorder. Ludovic Dugas, a psychologist/philosopher, who often wrote on topics of memory and déjà vu, is most often credited with first using the term in its present context, in the late 1890s ... Read More...