Divided Minds

llamprou's picture

Divided Minds: Twin Sisters and Their Journey Through Schizophrenia by Pamela Spiro Wagner and Carolyn S. Spiro, M.D., St. Martin’s Press, New York, 2005

 

After reading Divided Minds, one can be doubly-sure that not only is schizophrenia a living hell for its hapless victims but that it is hellish for their families and loved ones as well.    In Greek, schizophrenia means split or divided (schizo) mind (phren) andin the book’s title, the authors have captured the essence of the malady.    For those afflicted, the mind moves between delusion and reality, irrationality and reason.   For those who wish to help the victims, the “journey” is at the very least frustrating, and at the other extreme, almost as difficult as the illness itself.

Carolyn and Pamela are identical twins brought up in nearly identical circumstances.  Initially, Pamela is considered the dominant (and the brighter) twin. Things change, however, as the girls cross into their teens.  While Carolyn leads what might be considered a “normal” life, her sister tries to function in the insane and irrational world of the severely schizophrenic.  In certain respects, their story practically trivializes thenature vs. nurture debate about mental illness.    Having sprung from one egg that divided after fertilization, they share identical genes.   They grew up in thesame family and were treated by their parents and peers in a similar fashion; at least until Pamela began to have strange thoughts and behave in a “weird” way starting when the girls were about 12 years old.   So what could have gone wrong?  That question is unanswerable from reading their story, but the consequences of whatever malfunctioned become painfully clear.

Taking turns in alternating chapters, the two gifted authors write their accounts of what took place and how each experienced life through the unique prism of her own mind.   Their major trials are narrated by each in a roughly chronological order. A chapter might cover a day, a week, a month, a season or several years.  For example, each woman recalls what she experienced when she was in sixth grade on the day that she learned that President John F. Kennedy had been assassinated.  Carolyn, the sane sister, is moved somewhat by normal reactions of shock, sadness and fear; but it stops there.  However, Pamela – who suspects somekind of vague involvement in the killing and is beginning to hear voices – has already begun her sad journey into the endless nightmare of mental illness.    Both authors tell their stories and describe their experiences growing up, but at some point, taking divergent paths.   As the illness progresses each woman sees a shared experience very differently from the other giving great interest to their story.

Both twins matriculatein Brown University but from there on, as Pamela’s condition worsens and her episodes into irrationality become more intense, their lives head off in very different directions.  Pamela’sfirst major crisis occurs during her freshman year.  What should be a happy and stimulating time in her life proves just the opposite as she becomes aware that her mind is on the brink of insanity. Yet over time and despite harrowingthoughts and paranoia, she is eventually and miraculously able to graduate magna cum laude and ΦΒΚ.   Carolyn transfers to Sarah Lawrence College and after graduation, enters Harvard Medical School.

Despite experiencing delusions about “Gray Crinkled Paper” and “The Five People” thats peak to her and control her thoughts, a year or so after Carolyn, Pamela also applies and gets accepted into a medical school. Eventually, her bouts of fear and panic finally do her in and she withdraws.   On the other hand, and with a certain irony, Carolyn goes on to specialize in psychiatry.  Both women are clearly very intelligent but as was suspected by their parents, teachers and peers even as early as the girls’ elementary school years, Pamela is the brighter of the two.  Once again reality seems to challenge the notion that intelligence is mostly genetic as both girls in theory have identical genes and therefore should be equal in intelligence.  However, given that they were close and communicative, as twin siblings are known to be, it is strange that Carolyn didn’t even consider the possibility that her sister was schizophrenic until Pamela was diagnosed as such when both sisters were well into their twenties!  One would expect that someone who is clearly bright and accomplished enough to get into Harvard Medical School should have had some inkling well before she was told so by professionals.

Yet, this attests to the insidious nature of the illness and the difficulty of diagnosing schizophrenia, especially in its early manifestations.    Carolyn and others simply thought that Pamela was “weird” (clearly a juvenile pejorative for unconventional), a slob (she was untidy with poor personal hygiene), depressed and rebellious.  On Pamela’s side, it is apparent that she was initially reluctant to mention the thoughts (the voices that taunted her) she was having that could alert someone to the fact that she was in trouble. Nevertheless, the two sisters shared aclose and caring relationship and in order to even function, Pamela required sisterly comfort and concern along with the sophisticated pharmacology used to treat her. 

  In the early chapters of her narrative, Pamela describes the state of her mind in ninth grade.  Her earliest thoughts and distorted perceptions are harbingers of the mental attacks to come.  She refers to “deepening stairs and telescoping school corridors” that are reminiscent of perspectives or scenes from horror movies, or in some of the last works of Vincent Van Gogh.   In her own words she feels as if she is “straddling several universes without fully belonging to any one ofthem.”   On the ceiling of her bedroom she sticks “melancholy” prints by Goya and El Greco. (75)   Locking the door to her room, her refuge from the world and inner sanctum is at times the “double closet” into which she “creeps” and shuts the sliding door behind her.    When her mother yells from another room, asking her to walk the dog, her mind instead hears “You bitter pig – change the upper climate”. (76)

The book isreplete with descriptions of Pamela’s countless times of mental crisis when she descends into a world of numbing fear, and at times, stark terror.   In order to cope with these apocalyptical conditions, Pamela at times becomes catatonic – afraid to move, mentally and physically frozen in time and space.   This is clearly a “mind attack” wherein the mind totally shuts down and all communication with the outside world ceases toexist; a place where a sane person’s vision of ‘reality’ dissipates and turns into a nightmare.   Triggers for these psychotic episodes could be something as benign as an evening around a fire at summer camp when she is a young girl, the more disturbing Kennedy assassination in 1973, an uneasy concern about computers around the world failing during the change in the millennium when the numerical fields changed from 1999 to 2000 (Y2K), or some stressful personal experience.    

Divided Minds gives the reader glimpses into the abyss of insanity of that the malady can produce.   For example, in one of the descriptions of her state of mind in high school, she recalls:

I am determined to reduce my bodily presence in the world, to take up less space, to be “one with the wind”, as discarnate and spiritual as a spring breeze. Already I have symbolically reduced myself to a disembodied “pair ofears”; Others are always seeking me out to listen to their problems while I divulge none of my own.  Now I strive to divest myself even of that. (81)

Or

I begin to lose it all.  My body feels foreign, no longer connected to me.  At the same time, I feel it’s my responsibility to keep away from others, to reduce the potential for harming them.  (82)

Even in college, her thought patterns take on an irrational life of their own:

Thoughts like a storm of tossed confetti whirl through my brain, ricocheting back and forth between the walls of my skull, evolving through a frantic train of association into revelations about the secrets of life and death, space and time. Without sensible connections, they segue on and dizzyingly until all mythoughts stop, coming hard up against the inescapable conclusion that Yes! I killed President Kennedy… (105)

Although it seems to me the voices drifting around my face like wisps of smoke are garbled, words spoken though thick webbing, eating noises have metastasized.  The crunch of someone biting a piece of toast seems to contain the slime of his saliva as well as the gummy, disgusting mess inside his mouth.  Even the ding and clatter of silver ware against cheap china are unbearable acoustic assaults, which my mask of indifference cannot muffle. (127)

In one of Pamela’s reminiscences looking back on when she was 26 years old, there is a brief insight into why many of those who are in the delusional throes of the disease are reluctant to speak about what is going on inside their minds:

Sitting in a chair, I am overwhelmed by the strangeness and voices, unable to move or talk, though a doctor—what is his name? Dr. Jonas is sitting in the chair opposite me.  I think he is waiting for me to speak, to answer a questionI no longer remember.  The silence goes on and on.  Finally, he leaves after I manage to move my head, shaking it “no” when he asks if I’m hearing voices.  I do hear voices, all thetime, but I’m too scared and too proud to admit it.  I’m the good little Nell, Pam the Pure, and good people don’t hear people swearing like stevedores coming out of nowhere. (172)

Covering the 1980s, when it seems that the psychotic episodes were very pronounced, Pamela would burn herself because as she confessed:  “…sometimes I’m so numb I feel like moon rock.  That’s when I burn myself.” (183)   Pamela exists in the most nightmarish of worlds.   There is even a time when she doesn’t recognize her twin sister. She confesses to a “terror of being seen or of seeing other people [that] is so intense that if I suspect someone is looking at me, I turn tailand race back to my room.” (275).   

One message that Divided Minds clearly passes onto the reader is that schizophrenia doesn’t just affect the life of its hapless victim, but all of those who care for the person as well.  The parents cannot deal with the problem and become distant for decades, especially the father who acts as if he has but one daughter.  Carolyn conveys the sadness and frustration of a sister who feels helpless and disoriented by her sister’s disease when she writes:  “To the world, I know I appear confident and happy, but underneath, I am lonely beyond bearing”. (279)   After “two decades of marriage”, Carolyn divorces her husband.   And what is Pamela’s comment?   “He’s [Carolyn’s ex-husband] trying to drive you crazy, don’t you see?”

There is a folkbelief – or perhaps it is a blurred combination of a number of them – that says in so many words, to order to hear the truth, listen to the words uttered by children, drunks, fools and madmen. Consistent with this belief, perhaps one of the most poignant and cathartic sections of Divided Minds is a poem that Pamela writes when she is in her early forties entitled:  “To Forgive Is…”:

To begin

and there is so much to forgive:

for one, your parents, one and two,

out of whose dim haphazard coupling

you sprang forth roaring, indignantly alive.

For this, whatever else followed,

innocent and guilty, forgive them.

If it is day, forgive the sun

its white radiance blinding the eye;

forgive also the moon for dragging the tides,

for her secrets, her half heart of darkness;

whatever the season, forgive it its various

assaults—floods,gales, storms

of ice—and forgive its changing;

for its vanishing act, stealing what you love

and what you hate, indifferent,

forgive time; and likewise forgive its fickle

consort, memory, which fades

the photographs of all you can’t remember;

forgive forgetting, which is chaste

and kinder than you know;

forgive your age and the age you were

when happiness was a fire in your blood

and joy sang hymns in the trees;

forgive, too, those trees, which have died;

and forgive death for taking them,

inexorable as God; then forgive God

His terrible grandeur, His unspeakable

Name; forgive, too, the poor devil

for a celestial fall no worse than your own.

When you have forgiven whatever is of earth,

of sky, of water, whatever is named,

whatever remains nameless, forgive, finally your own sorry self,

clothed in temporary flesh

the breath and blood of you

already dying.

Dying, forgiven, now you begin.

 

           

But Pamela’s more lofty insights sadly are ephemeral.  She goes through quiet and lucid moments and other times she is in “unbearable reality”.   She is in and out of mental hospitals, in and out of drugs that sedate her and turn her into a vegetable. Frenzies come and go.

 

It starts with simple irritability but quickly escalates until I am screaming and swearing like a harridan and they move me into a seclusion room.  I get so out of control they put me in restraints and I’m told that at one point I take off all my clothes and race around the unit stark naked.  More than once, enraged that my bathroom door is locked, I take a dump right on the floor of my room.  I use markers to scribble four-letter words and graffiti quoting whatever the voices tell me.  FUCK THIS SHIT, YOU COCK SUCKERS!  I AM THE OGRE THAT ATE MANHATTAN! KILL ME!  I DON’T CARE!

 

I don’t care that Zyprexa [ananti-psychotic] would help.  I hate it more than anything, even more than being insane. (298)

 

Curiously, there were times when Pamela depended on medication to keep her frightening thoughts and fears at bay.   Yet, like many others with her condition, there are times when she resists taking any medication whatsoever.    One can only wonder whether there is something in the human mind that recognizes that a part of their brain becomes dysfunctional when antipsychotic drugs are taken.  This seems to be consistent with the findings of Dr. Nancy C. Andreasen, a psychiatrist and neuroresearcher at the University of Iowa. Dr. Andreasen has performed a number of studies of the brain using information provided by MRI and other imaging technologies.  She has discovered that those who are afflicted with schizophrenia lose brain tissue at a much more rapid rate than those who are of comparable age and who are disease-free.  Andreason’s findings show a rate of loss of 1 percent per year from onset of the disease which can start from the teenage years.  This means that someone can lose up to 20 percent of their brain tissue in twenty years, or by the time they are in their forties.   Equally important is the finding that antipsychotic drugs cause the brain to atrophy inthe region where it is effective. The drugs work by blocking basal ganglia activity in the prefrontal cortex.  The psychoses may stop, but the brain in that region begins to atrophy!  In other words, the more drugs you've been given, the more brain tissue you lose: truly a double-edged sword and a dilemma for the afflicted and their loved ones.  At the same time, the schizophrenic must deal with numerous otherside-effects that according to Pamela are worse than the disease such as double-vision, weight gain, and dry mouth, and sedation.       

                

Reading Divided Minds, then, is something like reading Dante’s Inferno.  It is a trip to hell, but for Pamela, unfortunately, there is little hope for a return, at least with the current therapies and medications.   Carolyn, the sister is Dante, the guide.   Interleaved with Pamela’s narrative, Carolyn keeps the reader sane by describing as objectively as she can what her rational mind is observing and describing what she sees happening in her sister’s world. 

 

There is a twenty-minute interview with the twins by Leonard Lopate on WNYC on-line that was recorded on 5 October 2005, just after the book was published.  [It is still available at: http://www.wnyc.org/flashplayer/player.html#/play/%2Fstream%2Fxspf%2F52415]   It is well worth the time it takes tolisten to it and is an effective antidote to the despair one might feel after reading the book.  Without knowing who is speaking, one can recognize who is Pamela and who is Carolyn.    Pamela’s voice is lower in tone and much slower and labored than Carolyn’s, which is full of energy and confidence.  Nevertheless, it gives a ray of hope tothe reader because it is clear that even after sixty visits to mental hospitals, there are times when the victim of this terrible illness seems to be “normal”.   When asked, Pamela, who has become an accomplished poet, believes that her ability to write poetry was enhanced by the experience of the disease.  Albeit very slight, it is nevertheless a silver lining to the very dark and frightening storm cloud of schizophrenia.

  

 

            

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Paul Grobstein's picture

Schizophrenia: the elephant in the room?

This puts me in mind of another book, The Center Cannot Hold by Elyn Saks, and a course session in which we talked about schizophrenia as the "elephant in the room" in discussions of mental health. If indeed we are all constructing private "realities" all the time, then "the mind moves between delusion and reality" can't be the distinguishing feature of schizophrenia. That notion may, however, be what makes many of us so fearful of it. How can we relate to/trust someone whose personal reality is so different from our own? Still worse, perhaps schizophrenic behavior is an unwelcome reminder that our own "reality" is, at root, "delusional"?

The story presented here, and in The Center Cannot Hold, suggests a different, perhaps more useful, way of thinking about schizophrenia. Yes, the brain state is troubling to others but, more importantly, it is troubling to people having that brain state. There is an awareness of difficulty, of conflict, and, at least at times, an ability to recall/report troubling behaviors and feelings associated with them. To put it differently, and in the context of our course discussions, schizophrenia does not involve a disappearance of consciousness (as in sleep walking). The story teller is present and active, but seems to be having difficulty generating a coherent and stable story that gives some consistency to behavior over time. Maybe that points a direction for thinking about schizophrenia in a less wrong and less troubling way? and for future research aimed at better understanding/ameliorating it?

I'm intrigued also by Pamela's belief "that her ability to write poetry was enhanced by her experience of the disease." Saks' story, like Kay Redfield Jamison's in the case of bipolar disorder, is one of professional success despite a "disability." But Saks quite explicitly denies any sense of schizophrenia having a positive aspect. I wonder how much this is a function of differing social contexts, some more and some less supportive of people finding ways to make use of their distinctiveness?

 

 

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