Transcript: Inside Schizophrenia's Fractured Landscape | Aug 01, 2019

Nam sits in the studio. She's in her early forties, with shoulder length curly brown hair. She's wearing glasses and a black blazer over a gray blouse.

A caption on screen reads "Inside schizophrenia's fractured landscape. Nam Kiwanuka, @namshine, @theagenda."

Nam says WHAT IF WE WERE TO RECONSIDER
WHAT NORMAL LOOKS LIKE
WHEN WE TALK
ABOUT MENTAL HEALTH?
AN ILLNESS LIKE SCHIZOPHRENIA IS
MISUNDERSTOOD AND STIGMATIZED.
BUT WHAT IS LIFE LIKE FOR THOSE
LIVING WITH IT?
SUSAN DOHERTY EXPLORES
THAT IN HER NEW BOOK: The Ghost Garden; INSIDE THE LIVES OF
SCHIZOPHRENIA'S FEARED AND FORGOTTEN.
AND SHE JOINS US NOW FOR MORE.

Susan is in her sixties, with shoulder-length wavy blond hair. She's wearing a sleeveless red dress and a gold pearl necklace.
A picture of her book appears briefly on screen. The cover features a picture of a crystal orb which reflects a landscape of water and dark trees.

Nam continues WELCOME.

Susan says THANK YOU, NAM.
THANK YOU FOR HAVING ME.

NAM SAYS IT'S REALLY NICE
TO MEET YOU.
THIS BOOK WAS FANTASTIC.
IT'S REALLY DIFFICULT
TO READ AT TIMES.
AND I WANT TO TALK TO YOU ABOUT
WHAT IT LIKE
FOR YOU TO WRITE IT.
BUT IT'S A FANTASTIC BOOK.

Susan says OH, THANK YOU SO MUCH.

Nam says YOUR PREVIOUS BOOK
WAS THE 2015 NOVEL A secret music.

SUSAN SAYS YES.

A picture of "A secret music" appears on screen. The cover features a photograph of a person wearing a gray shirt.

NAM SAYS WHAT DID YOUR FICTION
WRITING CONTRIBUTE... TO THIS PROJECT:
THE GHOST GARDEN?

The caption changes to "Susan Doherty. Author, 'The ghost garden.'"
Then, it changes again to "This way leads in."

Susan says WELL, BOTH OF THEM REQUIRED ME
TO DO A LOT OF RESEARCH.
IN... WITH
A SECRET MUSIC,
I WAS SPECIFICALLY LOOKING AT
TREATMENT OPTIONS FOR MENTAL
ILLNESS IN THE 1930S.
ONE OF THE MAIN CHARACTERS
IN THE BOOK SUFFERED
FROM DEPRESSION.
AND THAT WORD HADN'T EVEN BEEN
COINED BACK IN THE 1930S,
SO I WENT TO...

NAM SAYS REALLY?

Susan says I KNOW, IT HADN'T!
SO I CALLED IT
"FLATTENED ANXIETY" IN THE BOOK.
ANYWAY, I WENT TO
THE DOUGLAS HOSPITAL;
I WENT TO LIBRARY
AND THE ARCHIVE...

NAM SAYS AND THE DOUGLAS HOSPITAL
IS A PSYCHIATRIC HOSPITAL...

SUSAN SAYS A PSYCHIATRIC HOSPITAL
AFFILIATED WITH
MCGILL UNIVERSITY...

Nam says IN MONTREAL, RIGHT?

Susan says IN MONTREAL.
IT USED TO BE CALLED
THE PROTESTANT ASYLUM
FOR THE INSANE.
AND, YES, I DID RESEARCH FOR
A SECRET MUSIC IN THE LIBRARY
AND THE ARCHIVE DEPARTMENT,
AND THE TRANSPARENCY WAS,
THEY GAVE ME EVERYTHING
THAT I NEEDED FOR THE BOOK,
BUT I CALLED THEM A
FEW WEEKS LATER,
AND I SAID,
"HOW CAN I HELP?
I'D LIKE TO BE A VOLUNTEER."

Nam says I FIND THAT REALLY FASCINATING.
SO YOU WENT FROM RESEARCHING
FOR A BOOK...

SUSAN SAYS YES...

Nam says AND THEN PUTTING YOUR HAND UP
AND SAYING,
"I WANT TO VOLUNTEER."

Susan says RIGHT.

Nam says WHAT... WHAT DID YOU WANT TO DO?
WHY DO THAT?
YOU COULD HAVE JUST WALKED AWAY.

Susan says I COULD HAVE JUST WALKED AWAY,
BUT, YOU KNOW, ONE OF THE ISSUES
IN
A SECRET MUSIC
WAS I WAS
TRYING TO UNDERSTAND
HOW TRAUMA IN CHILDHOOD
AFFECTS US AS ADULTS.
THAT WAS ONE OF THE THEMES
IN
A SECRET MUSIC.
AND SO WHEN I WAS ON THE GROUNDS
OF THE HOSPITAL,
AND THERE WERE PATIENTS
THAT WERE ACTUALLY WORKING
IN THE LIBRARY,
AND I THOUGHT,
"THIS MUST BE A REALLY
SPECIAL PLACE."
BUT, YOU KNOW, WE ALL NEED TO
LIVE WITH PURPOSE,
AND FACT THAT THEY
WERE... YOU KNOW,
PEOPLE THAT LIVED
AT THE HOSPITAL
WERE WORKING IN THE LIBRARY.
SO I... YES,
I WANTED TO VOLUNTEER THERE.
DO YOU KNOW,
ON THE VOLUNTEER FRONT,
PEOPLE RUSH TO VOLUNTEER
ON CANCER WARDS... AND PEDIATRIC WARDS,
BUT THE PSYCH WARDS...

NAM SAYS WHY DO YOU THINK THAT IS?

SUSAN SAYS I THINK
IT'S THE FEAR FACTOR.
PEOPLE ARE AFRAID
OF THIS... THE DELUSIONAL PART
OF SCHIZOPHRENIA,
THE PSYCHOTIC SYMPTOMS.
ONCE... WHEN THEY SEE BEHAVIOUR
THAT IS, YOU KNOW,
NOT CONSIDERED NORMAL,
THEY DON'T UNDERSTAND IT,
AND THEY... AND
THEY PULL AWAY.
AND IT'S SO ISOLATING FOR THE
PEOPLE WHO HAVE PSYCHOSIS.

Nam says WELL, THIS BOOK,
THE GHOST GARDEN,
IS CENTRED AROUND A
WOMAN CALLED CAROLINE,
WHO YOU KNEW FROM CHILDHOOD.

SUSAN SAYS YES.

The caption changes to "Connect with us: Twitter: @theagenda; Facebook, agendaconnect@tvo.org, Instagram."

Nam says WHAT WERE THE FIRST SIGNS
OF HER MENTAL ILLNESS?

The caption changes to "Discovering Caroline."

Susan says YOU KNOW, SHE STARTED TO REALLY
CHANGE IN GRADE 11,
IN HER SENIOR YEAR
OF HIGH SCHOOL.
AND, OF COURSE, WE DIDN'T KNOW
ANYTHING BACK THEN.
BUT I GUESS THE FIRST FEW THINGS
THAT HAPPENED IS,
SHE HAD A HUGE GROUP OF FRIENDS
IN GRADE 10...

NAM SAYS A BIG FAMILY TOO...

Susan says A BIG FAMILY.
SHE'S ONE OF TEN CHILDREN,
ONE OF TEN CHILDREN.
AND SHE HAD LOTS
OF FRIENDS.
SHE WAS ON THE BASKETBALL TEAM,
THE STUDENT COUNCIL.
AND THEN IN GRADE 11,
SHE STOPPED BEING INTERESTED
IN ALL OF HER ACTIVITIES;
HER GRADES DROPPED;
SHE STAYED IN HER ROOM.
SO THOSE ARE... THAT'S WHAT'S
CALLED THE PRODROMAL PHASE
OF MENTAL ILLNESS.
JUST THOSE BEHAVIOURS,
THAT'S THE TIPPING POINT.

NAM SAYS AND I THINK FOR A LOT OF
PEOPLE, AND I THINK MAYBE THIS
WAS ONE OF THE CHALLENGES
FOR HER FAMILY,
IS THAT THAT COULD JUST BE
WRITTEN OFF.
"OH, SHE'S A TEENAGER."

SUSAN SAYS OH, ABSOLUTELY.
"SHE'S A TEENAGER."

NAM SAYS "SHE'S BEING MOODY."

SUSAN SAYS EXACTLY, EXACTLY.

Nam says YOU KNOW, HOW DO YOU KNOW
IF IT'S SOMETHING WORSE,
OR SOMETHING MORE... SOMETHING
THAT NEEDS TO BE ADDRESSED?

Susan says BUT, YOU KNOW, THE NEXT THING
THAT HAPPENED FOR CAROLINE
WAS SHE WOULD MAKE
THESE OUTRAGES STATEMENTS.
AND, YOU KNOW, STARSKY AND HUTCH
WERE IN HER ROOMS
AT THE BANFF SPRINGS HOTEL.
OR SHE HAD IDEATION ABOUT BOYS
WHO WERE IN LOVE WITH HER,
AND NONE OF THAT WAS TRUE.
AND WE ALL CHALKED IT UP TO HER
TRYING TO MAKE HER LIFE BIGGER,
OR THAT SHE WAS LIAR, LIAR,
PANTS ON FIRE.
WHEN IN ACTUAL FACT,
SHE WAS BEGINNING TO BREAK DOWN.
SO THAT'S MY FIRST MESSAGE
TO ALL OF US, TO PARENTS,
TO SIBLINGS, TO, WHEN YOU SEE
A PERSON CHANGE
IN FRONT OF YOUR EYES,
YOUR RADAR SHOULD GO UP.

Nam says AND IT WOULD BE AT LEAST A
DECADE OR... UNTIL SHE WAS
DIAGNOSED WITH ANYTHING, RIGHT?

Susan says OH, YEAH, WELL,
IT WAS ACTUALLY...

NAM SAYS LONGER?

Susan says IT WAS TWO DECADES.
I MEAN, SHE HAD HAD LONG-STAYS
ON THE 4 EAST
AT THE LAKESHORE GENERAL
IN MONTREAL.
THREE LONG-STAY, SIX MONTH...

NAM SAYS BUT SHE WAS NEVER
REALLY DIAGNOSED WITH ANYTHING?

SUSAN SAYS DO YOU KNOW,
IN THE BEGINNING,
THEY THOUGHT IT WAS DEPRESSION.
THEY THOUGHT IT WAS POSTPARTUM.
SHE'S A MOM; SHE HAS TWO SONS.
THEY THOUGHT IT WAS ANXIETY.
THEY THOUGHT IT WAS... I MEAN,
BIPOLARITY.
AND FOR ALL OF THOSE DIAGNOSES,
SHE WAS GIVEN MEDICATION, SO...

NAM SAYS DO YOU THINK IT COULD HAVE
HELPED HER HAD SHE BEEN DIAGNOSED
SOONER WITH SCHIZOPHRENIA?

The caption changes to "Susan Doherty, @susanpdoherty."

Susan says DO YOU KNOW WHAT'S SO CURIOUS,
SHE HAD... HER FIRST... HER VERY,
VERY FIRST PSYCHIATRIC
APPOINTMENT,
THE DOCTOR SAID
TO CAROLINE,
"YOU KNOW, YOU'RE
JUST A FLOWER CHILD;
YOU'RE GOING TO FIND YOUR WAY."
AND MAYBE SHE WOULD HAVE.
AND IT'S... THERE'S SO MUCH
THAT WE DON'T UNDERSTAND
ABOUT SCHIZOPHRENIA
AND HOW... HOW IT STARTS,
OR WHERE IN THE BRAIN IT STARTS.

Nam says AND I'M SURE WITH HER FAMILY
TOO, THERE'S PROBABLY A LOT OF,
"COULD OF," "SHOULD OF," THAT GO
THROUGH YOUR MIND, YOU KNOW?

SUSAN SAYS OH, GOSH, YES, YES.

Nam says YOU WERE TALKING ABOUT
SOME OF THE CLAIMS
THAT SHE WAS MAKING
WHEN SHE WAS IN HIGH SCHOOL.

SUSAN SAYS RIGHT.

Nam says BUT EVENTUALLY, HER MENTAL
HEALTH DECLINES TO A POINT
WHERE SHE ACTUALLY ACCUSES
HER BROTHER AND FATHER
OF SEXUALLY ASSAULTING HER.
HOW DID YOU REACT WHEN
YOU LEARNED ABOUT THIS PART
OF CAROLINE'S HISTORY?

Susan says WELL, I MEAN,
I WAS A VERY GOOD FRIEND
OF CAROLINE'S
OLDER SISTER ROSALIND,
AND SO I WAS
AROUND THE HOUSE A LOT,
SO I IMMEDIATELY KNEW
THAT IT WAS... IT WAS FALSE.
AND I ASKED, YOU KNOW,
ROSALIND HOW SHE FELT,
AND SHE WAS SICKENED
THAT ROS... THAT CAROLINE
HAD THOUGHTS LIKE THAT.
I MEAN, IT WAS... IT WAS A REALLY
DEVASTATING THING
TO FIND THOSE PAPERS IN A BOX
UNDER THE BUNK BED.
BUT, YOU KNOW, AS ROSALIND SAYS,
THERE WERE TEN CHILDREN,
TWO DOGS, TWO CATS,
IN A MEDIUM-SIZED HOUSE.
SHE SAID, "THERE WOULD HAVE BEEN
NO PLACE FOR THAT TO HAPPEN."
AND SO...

NAM SAYS AND THE BOX THAT YOU REFER
TO IS THAT CAROLINE,
THROUGHOUT THE YEARS...

SUSAN SAYS CAROLINE WROTE DOWN
ALL THESE ACCUSATIONS
AGAINST HER FATHER
AND HER BROTHER.

NAM SAYS RIGHT.

Susan says YES.
AND THAT WAS ANOTHER CRITICAL
MOMENT FOR THE FAMILY,
RECOGNIZING THAT CAROLINE'S SET
POINT WAS VERY DIFFERENT
FROM EVERYONE ELSE.

Nam says YOU MENTIONED ONE OF THE
SISTERS, ROSALIND,
AND THESE ARE NOT
THEIR REAL NAMES,
AND ANOTHER SISTER, PEGGY.

SUSAN SAYS YEAH.

Nam says AND THEY BECOME THE CORE OF THE
FAMILY SUPPORT
THROUGHOUT CAROLINE'S
BATTLES WITH SCHIZOPHRENIA.

SUSAN SAYS YES.

NAM SAYS CAN YOU TELL US
MORE ABOUT THEM?

The caption changes to "Family support."

Susan says YOU KNOW, ROSALIND AND
PEGGY... WELL, FIRST OF ALL,
ABOUT 20 YEARS AGO,
ROSALIND STARTED TO DOCUMENT
CAROLINE'S PATH.
SHE'D HAD PSYCHOTIC BREAKDOWN
AFTER PSYCHOTIC BREAKDOWN,
AND SHE REALLY NEEDED
TO DOCUMENT EVERYTHING.
AND BOTH PEGGY AND ROSALIND
LIVE IN OTTAWA,
WHICH IS WHERE
CAROLINE LIVES,
AND SO GEOGRAPHICALLY,
IT WAS VERY EASY FOR THEM
TO SHOULDER THE BURDEN.
AND BOTH OF THOSE TWO SISTERS
HAVE MADE IT THEIR MISSION
TO LOOK AFTER THEIR SISTER.

Nam says I THOUGHT IT WAS SO INCREDIBLE
HOW MUCH LOVE THEY HAD,
BECAUSE SOME MEMBERS
OF HER FAMILY
MIGHT NOT HAVE BEEN
PRESENT FOR WHATEVER REASONS.
BUT HOW MUCH ONGOING SUPPORT
DID CAROLINE RECEIVE
FROM HER MOTHER ISABEL?

Susan says YOU KNOW, IN THE EARLY DAYS,
ISABEL KNEW THAT... THAT CAROLINE
WAS THE MOST SENSITIVE
OF HER TEN CHILDREN.
AND WHEN SHE WAS A LITTLE GIRL,
ISABEL WAS COMPLETELY THERE
FOR HER.
AND I THINK WHAT HAPPENED
WITH ISABEL IS SHE BURNED OUT.
I MEAN, THE VERBAL ABUSE... ONE
OF THE SYMPTOMS
OF A PSYCHOTIC EPISODE,
OVER TIME,
IT JUST WORE ISABEL DOWN.
AND SHE REALLY
PULLED AWAY,
AND LEFT THE CAREGIVING
OF CAROLINE TO HER DAUGHTERS,
PRINCIPALLY ROSALIND
AND PEGGY,
BECAUSE THEY
LIVED IN OTTAWA.
YEAH, SHE BURNED OUT.

NAM SAYS AND THIS REALLY
HURT CAROLINE.

Susan says DO YOU KNOW, IT DID,
BECAUSE THEY'D BEEN SO CLOSE
WHEN THEY WERE... WHEN
CAROLINE WAS YOUNGER.
AND DO YOU KNOW,
ONE OF THE THINGS I WANT TO SAY
IS WE CAN'T JUDGE ISABEL.
THE HARDSHIP ON THE FAMILY
TO LOOK AFTER
A REALLY MENTALLY
ILL SYMPTOMATIC SON OR DAUGHTER,
IT'S INCALCULABLE: THE WEIGHT,
THE BURDEN FOR FAMILY MEMBERS.

Nam says WELL, ONE OF THE SISTERS, AT ONE
POINT, RELATES THAT IT FEELS
LIKE AS IF THEY HAVE PTSD.

Susan says RIGHT.

NAM SAYS HOW DOES AN ILLNESS LIKE
SCHIZOPHRENIA IMPACT A FAMILY?

Susan says WELL, I MEAN, THE ONES THAT ARE
IN THERE FOR THE LONG HAUL,
IT'S A BURDEN,
UNLESS YOU REACH OUT
AND GET HELP YOURSELF, AND...

NAM SAYS BUT THAT'S ALSO IF YOU KNOW
WHERE TO REACH OUT TO, RIGHT?

SUSAN SAYS EXACTLY.
AND WE NEED MORE SERVICES.
I MEAN, ONE OF THE THINGS THAT
ROSALIND SAID TO ME,
WHEN WE WERE DOING THE BOOK
TOGETHER, WAS SHE SAID,
"NOBODY EVER PHONED HER OR SAID,
'ROSALIND, HOW ARE YOU DOING?'."
YOU KNOW, WE DO NEED MORE FAMILY
SERVICES TO LOOK AFTER
THE FAMILY MEMBERS,
BECAUSE IT... YOU'RE RIGHT.
IT IS AN INCREDIBLE STRESS
ON THE FAMILY.

NAM SAYS YOU MENTIONED THAT CAROLINE
DID HAVE CHILDREN.
SHE HAD TWO KIDS.

SUSAN SAYS YEAH, SHE HAD TWO BOYS.

Nam says SHE WAS ALSO MARRIED.
WERE THOSE CONNECTIONS A HELP
OR DID THEY CAUSE MORE HARM
TO HER MENTAL HEALTH?

SUSAN SAYS THAT'S A REALLY GOOD
QUESTION.
I WOULD SAY IT WAS A BLESSING
AND A CURSE.
IT WAS A CURSE IN THAT SHE FELT
TERRIBLE GUILT
THAT SHE WASN'T
ABLE TO MOTHER HER CHILDREN
THE WAY SHE WOULD HAVE
WANTED TO,
HAD SHE NOT HAD
THE SYMPTOMS OF SCHIZOPHRENIA.
AND THE BLESSING IS, SHE WAS ON
HOSPITAL UNITS FOR LONG-STAY,
I MEAN, YEAR AFTER YEAR
AFTER YEAR,
AND SHE ALWAYS HAD SOMETHING
TO LOOK FORWARD TO.
AND AS ROSALIND SAID TO ME,
"IT KEPT HER
FROM COMMITTING SUICIDE... THAT SHE HAD THOSE TWO BOYS,
ALWAYS,
AT THE END OF THE TUNNEL.

Nam says AND THE IMPACT ON THE KIDS?

Susan says DO YOU KNOW, IT'S HARD TO SAY.
SHE'S REALLY SHIELDED THEM
FROM EVERYTHING.
I MEAN, SHE... SHE HAS NOT SHARED
WITH HER BOYS ALL OF THE HARDEST
MOMENTS OF HER LIFE.
I MEAN, THE EVERGREEN STORY
WHERE SHE HAD
HER FIRST PSYCHIATRIC... HER
PSYCHOTIC BREAKDOWN.
SHE WORRIES TERRIBLY
THAT WHAT HAPPENED TO HER
MIGHT HAPPEN TO THEM,
LIKE THE GENETIC COMPONENT.
BUT THE TWO... THEY'RE LOVELY,
LOVELY BOYS.
THEY REALLY ARE.

Nam says SOMETHING THAT I FOUND REALLY
INTERESTING READING THIS BOOK
IS THAT THERE'S ACTUALLY A
CONNECTION WITH CIGARETTES...

SUSAN SAYS OH, YES.

Nam says AND MENTAL ILLNESS?
OR IS IT JUST SCHIZOPHRENIA?

The caption changes to "Symptoms and solutions."

Susan says SO WHAT... A HUGE PERCENTAGE
OF PEOPLE
WITH SCHIZOPHRENIA
SMOKE CIGARETTES.
AND THE REASON
IS ANTI-PSYCHOTIC MEDICATIONS
TARGET THE DOPAMINE
SYSTEM IN THE BRAIN,
AND THE DOPAMINE SYSTEM
IS OUR REWARD SYSTEM.
AND, YOU KNOW,
EVEN DRINKING A GLASS OF WATER
ACTIVATES YOUR DOPAMINE SYSTEM.
BUT THINGS LIKE EATING CHOCOLATE
OR SEX, I MEAN, EXERCISE,
THERE ARE A MULTITUDE OF WAYS
TO EXCITE THE DOPAMINE PATHWAYS.
AND SO FOR A PERSON... FOR
A PERSON
WHO'S TAKING
ANTI-PSYCHOTIC MEDICATION,
THE DOPAMINE IS REDUCED.
SO SMOKING CIGARETTES,
IT TARGETS... WHEN YOU
SMOKE A CIGARETTE,
THE NICOTINE HITS THE NICOTINE
RECEPTORS IN THE BRAIN,
AND THE NICOTINE RECEPTORS
RELEASE DOPAMINE.
SO IN EFFECT,
IT'S A SURVIVAL MECHANISM.

NAM SAYS BUT THEN, I GUESS,
THAT'S ALSO CREATING
ADDITIONAL HEALTH CHALLENGES.

SUSAN SAYS OH YES, THE LUNGS,
THE CARDIOVASCULAR PROBLEMS.
AND HOSPITALS USED TO DOLE THEM
OUT EVERY HOUR, JUST AS PART OF,
YOU KNOW,
THE DAILY ROUTINE ON THE UNIT.
THE ROYAL OTTAWA IN OTTAWA,
LONG AGO, THEY SAID,
"OK, WE ARE... WE ARE ADDING
TO THE HEALTH CONCERNS
FOR THE PATIENT,"
AND THEY'VE MADE A CONCERTED
EFFORT TO HELP PEOPLE
WITH SCHIZOPHRENIA CUT DOWN
ON SMOKING.

Nam says I WANT TO READ SOMETHING
FROM YOUR BOOK.

SUSAN SAYS THANK YOU.

Nam says AND ONE OF THE SERIOUS SYMPTOMS
OF SCHIZOPHRENIA
THAT YOU DISCUSS IN THE BOOK
IS THAT OF HEARING VOICES.
YOU WRITE...

A quote appears on screen, under the title "Hearing things." The quote reads "MRIs have shown that the same areas of the brain light up when a person hears an actual voice and when a person has an auditory hallucination. This explains why so many people who hear such 'command' voices insist that the C.I.A., or some other secret agency, has implanted a bug in their brains. It's a plausible way to comprehend the experience, especially when no one else hears what is so clearly articulated to them.
We all hear voices in order to process our experiences. We lie in bed on a sleepless night and 'hear' a steady stream of chatter that does not stop. We think our way through our problems with silent (insistent and often miserable!) internal conversations."
Quoted from Susan Doherty, "The ghost garden." 2019.

Nam says SO WHAT IS THE DIFFERENCES... WHAT
IS THE DIFFERENCE
BETWEEN THE VOICES THAT YOU AND
I MIGHT HEAR
DURING A STRESSFUL NIGHT
AND THE VOICES
THAT CAROLINE EXPERIENCED?

The caption changes to "Watch us anytime: tvo.org, Twitter: @theagenda, Facebook Live, YouTube."

Susan says WELL, WHAT YOU SAID A MOMENT AGO
ABOUT THE MRIS,
LIKE WHEN THEY HAVE
DONE NEUROIMAGING
OF THE BRAIN OF A PERSON
WHO IS HEARING A VOICE
THAT... AN EXTERNAL PERSON
WHO IS SPEAKING TO THEM,
AND THEN A PERSON
WHO IS HEARING VOICES,
THERE'S THE SAME BRAIN ACTIVITY.
AND TO YOUR... TO ANOTHER POINT
THAT YOU BROUGHT UP
IS THAT THAT HEARING VOICE
EXPERIENCE IS SO REAL
THAT I CAN'T TELL YOU HOW MANY
PEOPLE HAVE SAID TO ME
THAT THE FBI OR THE CIA
HAS PLANTED A DEVICE
IN THEIR BRAIN,
BECAUSE FOR THEM,
THE HEARING VOICE
EXPERIENCE IS SO REAL,
IT'S THE ONLY PLAUSIBLE
EXPLANATION.
IT'S...

Nam says THEY FEEL LIKE THEY'RE ACTUALLY
IN DANGER.

SUSAN SAYS THEY DO!
WELL, THEY... AND,
YOU KNOW,
SOMETIMES THE VOICES ARE CARING
AND CARESSING.
BUT MOST OF THE TIME,
THEY ARE PERSECUTORY,
AND THEY ARE EVIL,
AND THEY UNDERMINE THE PERSON,
AND, YOU KNOW,
THE NEGATIVE VOICES.

Nam says AT ONE POINT, YOU WRITE ABOUT
HOW CAROLINE'S VOICES
ARE TELLING HER TO HURT HER
ROOMMATE, WHO YOU CALL HILLARY.
WHAT HAPPENED?

Susan says SO CAROLINE AND HILLARY
MET ON A PSYCHIATRIC UNIT,
AND THEY WERE BOTH
LONG-STAY PATIENTS,
AND THEY BECAME FRIENDS
ON THE UNIT, WHICH IS ACTUALLY...

NAM SAYS THEY BECAME REALLY GOOD FRIENDS.

Susan says THEY BECAME... I MEAN,
IT'S VERY RARE.
YOU KNOW, EVEN IN MY OWN
EXPERIENCE, THE LAST TEN YEARS,
I HAVE NOT SEEN THAT BEST FRIEND
THING HAPPENING ON THE UNIT.
AND SO THEY MADE PLANS
TO LIVE TOGETHER.
THEIR RELEASE DATES
WERE QUITE CLOSE TOGETHER.
AND EVEN THE NURSES
AND THE SOCIAL WORKERS
ON THE UNIT SANCTIONED THEM
LIVING TOGETHER.
AND SO THEY... YOU KNOW,
HILLARY HAD HER OWN TOWNHOUSE,
AND SHE INVITED CAROLINE
TO BE HER ROOMMATE.

Nam says AND THEN THERE'S A THIRD
ROOMMATE, SIMON?

Susan says AND THERE WAS A THIRD,
RIGHT, SIMON,
WHO WAS A FRIEND OF CAROLINE'S.
BUT ALMOST IMMEDIATELY... NEITHER
OF THEM HAD BEEN OFF THE UNIT
FOR VERY LONG.
IF THE TOILET PLUGGED OR...

NAM SAYS PAYING THE BILLS...

Susan says "WHAT DAY IS RECYCLING?"
PAYING THE BILLS,
EVERYTHING BECAME
TOO OVERWHELMING FOR CAROLINE.
AND WITHIN A COUPLE OF MONTHS,
SHE STARTED HEARING VOICES,
AND SHE STARTED... A VOICE
TOLD HER THAT THE DEVIL
WAS LIVING INSIDE
HILLARY'S BODY.
SO WHAT HAPPENED
WAS SHE FILLED A KETTLE
WITH BOILING... SHE FILLED A
KETTLE WITH WATER ON THE STOVE,
AND SHE... ONCE IT CAME TO A BOIL,
SHE WALKED OVER TO THE COUCH
WHERE HILLARY WAS SLEEPING,
AND SHE POURED BOILING
WATER IN HILLARY'S EAR
BECAUSE SHE WAS TOLD THAT'S
WHERE THE DEVIL WAS BREATHING.

NAM SAYS HILLARY SURVIVED.

SUSAN SAYS HILLARY SURVIVED.
THIRD-DEGREE BURNS ON HER NECK,
BACK, ARMS, HER CHEST.
SHE DOES HAVE SOME PERMANENT
HEARING LOSS, AND...

NAM SAYS HAS CAROLINE COME TO TERMS
WITH WHAT SHE DID, OR...

Susan says DO YOU KNOW,
IN THE EXPLORATION OF THIS BOOK,
THE BOILING WATER
INCIDENT IS THE ONLY THING
THAT SHE HAS NOT BEEN ABLE
TO CRAWL BACK INTO AND DISCUSS.
EVERYTHING ELSE... AND THERE
WERE... WELL,
WHEN YOU READ THE BOOK,
THERE ARE SO MANY TRIP-UPS... SO MANY PSYCHOTIC,
DELUSIONAL MOMENTS.
SHE TOOK AN AIRPLANE
TO NEWFOUNDLAND ONE TIME
TO MEET A FICTIONAL PERSON.
BUT THE FACT
THAT SHE HURT HER FRIEND,
SHE HAS NOT YET BEEN
ABLE TO RECONCILE THAT.

Nam says WHAT MEDICATIONS WERE PRESCRIBED
TO HELP CAROLINE DEAL
WITH HER SCHIZOPHRENIA?

Susan says WELL, I GUESS SHE STARTED
WITH THE FIRST GENERATION
ANTIPSYCHOTICS
THAT SHE WAS TAKING, HALDOL.
SHE WAS OBVIOUSLY
ON SLEEPING PILLS.
SHE WAS TAKING BENZODIAZEPINES
FOR ANXIETY.
AND THEN IN THE 1990S, WHEN
SECOND-GENERATION ANTIPSYCHOTICS
CAME ON TO THE MARKET,
SHE WAS SWITCHED TO ZYPREXA,
WHICH IS... OLANZAPINE IS THE
GENERIC NAME HERE IN CANADA.
AND UNFORTUNATELY,
SHE DEVELOPED DIABETES,
WHICH IS A SIDE EFFECT
OF OLANZAPINE.
AND SHE'S QUITE DEBILITATED NOW
BY THAT SIDE EFFECT OF DIABETES.

Nam says SHE ALSO HAD ELECTROCONVULSIVE
SHOCK THERAPY, RIGHT?

SUSAN SAYS YES, YES, SHE HAD ECT.
AND DO YOU KNOW THAT ECT
IS MAKING A LITTLE BIT
OF A QUIET COMEBACK.
FOR SOME PATIENTS... THEY RECEIVE A HUGE LIFT
OUT OF A MAJOR DEPRESSION.
YOU KNOW, SCIENTISTS DO NOT
UNDERSTAND HOW OR WHY ECT WORKS.
BUT FOR SOME, IT IS... IT IS
A VIABLE TREATMENT OPTION.

Nam says YOU QUOTE CAROLINE AS SAYING,
"SOCIETY NEEDS TO WAIT
FOR PEOPLE TO HEAL INSTEAD
OF THROWING MEDS AT US.
WE ARE ALL FRAGILE."
HOW WELL WOULD YOU SAY THE DRUGS
WORKED FOR CAROLINE?

Susan says WELL, THE DRUGS ARE SPECULATIVE,
AND THE REASON THE DRUGS
ARE SPECULATIVE IS BECAUSE WE
DON'T KNOW WHERE ON THE BRAIN,
WHICH RECEPTORS, WHICH
PARTS OF THE PREFRONTAL CORTEX,
WHERE ON THE CEREBRUM,
WE CAN LOCATE SCHIZOPHRENIA,
THE ORIGINS.
AND SO IT MAKES
ALL DRUGS SPECULATIVE.
YOU KNOW, I GIVE THE EXAMPLE OF,
YOU KNOW, JOHN KENNEDY, JR.
FLYING HIS PLANE
WITHOUT THE HORIZON.
SOMETIMES WE LAND
ON MARTHA'S VINEYARD,
AND SOMETIMES WE CRASH
INTO THE OCEAN.
THEY ARE SPECULATIVE,
AND SO A LOT OF PEOPLE
DO NOT BENEFIT FROM DRUGS,
AND SOME PEOPLE DO.
BUT IT IS VERY MUCH TRIAL
AND ERROR.

NAM SAYS NEAR THE END OF
THE GHOST GARDEN,
THERE'S THIS PASSAGE,
AND YOU WRITE...

Another quote from Susan's book appears on screen, under the title "To drug, or not to drug?" The quote reads "As I wrote this book, I flipflopped between embracing the necessity of antipsychotic medication and vilifying the culture that has made sedation a major aspect of treatment. There is still no evidence that medication corrects a biological abnormality. The notion that biochemical imbalance in the brain is the root cause of mental illness is still speculative. Extreme mental illness is, however, a debilitating series of experiences that cannot be wished away."

Nam says IF MEDICATION ISN'T THE ANSWER,
IS THERE A SOLUTION THAT HELPS
BOTH A PERSON WHO'S LIVING
WITH SCHIZOPHRENIA
AND THE PERSON THEY MIGHT HARM
IF THEIR SYMPTOMS LOSE CONTROL?

The caption changes to "On the downside."

Susan says WOW, THAT'S A GOOD QUESTION.
I MEAN, TO THE FIRST QUESTION, I
MEAN, THE HUMANITY OF A PERSON
IS OFTEN DISGUISED
BY THEIR SYMPTOMS.
AND WE DON'T SEE THE HUMAN
BEING; WE ONLY SEE THE DELUSIONS
AND THE PARANOIA,
AND... AND SO...

NAM SAYS THAT'S REALLY INTERESTING.
SO YOU'RE SAYING
THAT THE MEDICATION IS A WAY
KIND OF TO JUST SHUT
THAT PERSON UP,
OR TO MAKE
THE PROBLEM GO AWAY?

Susan says YEAH, IT DOES.
THE SEDATIVE ASPECTS
OF ANTIPSYCHOTICS,
IT QUIETENS THEM DOWN.
AND IT MAKES THEM MORE
ACCEPTABLE TO THEIR FAMILY.
IT MAKES THEM MORE ACCEPTABLE
TO SOCIETY.
BUT IT DOESN'T NECESSARILY
BENEFIT THE PATIENT
OR THE PERSON,
BECAUSE, YOU KNOW,
THE SIDE EFFECTS ARE LETHARGY,
AND BRAIN FOG,
OBESITY, CONSTIPATION,
DRY MOUTH, ERECTILE DYSFUNCTION.
I MEAN, THE SIDE EFFECTS
ARE REALLY PROFOUND,
ADDED TO THE BURDEN OF HAVING
THE SYMPTOMS OF MENTAL ILLNESS.
SO, YES, I REALLY DID FLIP-FLOP
BETWEEN THE MEDICATION MODEL,
WHICH IS ALL PERVASIVE... AND THE HUMAN CONNECTION,
WHICH IS IN MY OPINION,
THE INFINITY ANGLE.
YOU KNOW, IT'S FREE; IT DOESN'T
COME WITH SIDE EFFECTS.
YOU KNOW,
IT ADDRESSES THINGS LIKE...

NAM SAYS BUT IT'S HARD, RIGHT?

Susan says IT IS HARD.
IT IS HARD.
I MEAN, I ADVOCATE
FOR NON-MEDICAL SPECIALISTS.
I MEAN, I'VE BEEN A VOLUNTEER
FOR TEN YEARS,
AND VOLUNTEERS
CAN CARRY THE WEIGHT
FOR THE FAMILY MEMBERS,
AND FOR SOCIAL WORKERS,
BECAUSE WE CAN BE THE FAIRY
GODMOTHER AND COME IN
AND SPEND A COUPLE OF HOURS
EVERY FEW DAYS, OR ONCE A WEEK,
AND WE... AND WE
HAVEN'T BURNED OUT.
AND WE CAN...

NAM SAYS AND YOU CAN ALSO JUST
LEAVE, RIGHT?

Susan says YES!

NAM SAYS YOU CAN DETACH.

Susan says EXACTLY, EXACTLY.

NAM SAYS WHERE SOMETIMES FAMILIES
MIGHT NOT FEEL LIKE THEY CAN.

SUSAN SAYS YES, YES.
YOU KNOW, OVER THE YEARS,
THE WILLINGNESS OF FAMILIES
TO SACRIFICE EVERYTHING
FOR THEIR CHILDREN
IS SOMETHING I'VE WITNESSED
TIME AND TIME AGAIN.
AND THEN THERE ARE FAMILY
MEMBERS THAT WALK AWAY.
AND I DON'T JUDGE ANYBODY
FROM WALKING AWAY.
AND I...

NAM SAYS I WANT TO GO BACK TO THIS
POINT ABOUT THE HUMANITY,
BECAUSE WITHIN THE BOOK
ABOUT CAROLINE,
YOU HAVE DIFFERENT STORIES
FROM SOME OF THE PEOPLE...

SUSAN SAYS YES...

Nam says THAT YOU'VE MET WHILE
VOLUNTEERING.
ONE OF THE PEOPLE THAT YOU WRITE
ABOUT IS A PERSON CALLED NORMAN.
AND HE LIVES
IN A GROUP HOME,
AND HE SUFFERED FROM WHAT
YOU CALL "A LACK OF PURPOSE."
HOW DID YOU HELP HIM
FIND A PURPOSE?

The caption changes to "Other stories."

Susan says SO NORMAN SUFFERS
FROM AGORAPHOBIA,
FROM AN INCIDENT THAT HAPPENED
TO HIM WHEN HE WAS A TEENAGER.
AND HE HAD A HARD TIME LEAVING
THE HOUSE,
HAD A HARD TIME... YOU KNOW,
THE ONLY... HE WOULD VENTURE OUT
TO BUY CIGARETTES
AT THE DÉPANNEUR,
WHICH IS THE LITTLE CORNER
STORE.
AND A LOVELY, LOVELY MAN
WHO EVENTUALLY TOLD ME
HIS WHOLE LIFE STORY.
AND HE WAS A SCIENTIST.
HE WANTED TO BE A TEACHER.
AND SO I SUGGESTED THAT WE GO
TO THE LIBRARY TOGETHER,
AND THAT I WOULD BE WITH HIM.
AND THAT IF HE FELT OVERWHELMED,
WE COULD LEAVE.
SO, HE ALSO DOESN'T LOOK
DISHEVELLED.
HE'S SLIM; HE HASN'T BEEN OVERLY
EFFECTED BY THE SIDE EFFECTS
OF THE MEDICATION.
SO, I PROPOSED TO HIM
THAT HE TAKE A COURSE
TO BE A PEER SUPPORT WORKER.
AND HE WAS VERY RELUCTANT.
IT TOOK HIM A LONG TIME TO COME
AROUND TO THE IDEA
OF BEING A PEER SUPPORT WORKER.
BUT IT'S CHANGED HIS LIFE.
BECAUSE, YOU KNOW, PEER SUPPORT
IS THAT A PERSON
HAS WALKED THE WALK,
TALKED THE TALK,
BEEN STIGMATIZED,
BEEN SHUNNED BY THEIR FAMILIES.
AND SO IT'S A BEAUTIFUL
EXPERIENCE
WHEN A PEER SUPPORT WORKER
CAN SPEAK TO SOMEBODY
WHO'S JUST EMERGING
WITH A MENTAL ILLNESS.

Nam says AND THAT'S THE PURPOSE... LIKE,
I REALLY THOUGHT
THAT WAS SO IMPORTANT,
BECAUSE I THINK ALL OF US,
AS WE MOVE THROUGH LIFE,
WE WANT TO GET MARRIED,
OR NOT,
OR HAVE CHILDREN, TRAVEL.

SUSAN SAYS OH YES.

Nam says BUT THEN WHEN WE THINK OF PEOPLE
WHO ARE... HAVE MENTAL ILLNESS,
THAT DESIRE TO HAVE A PURPOSE
DOESN'T GO AWAY.

Susan says WELL, AND, YOU KNOW,
IT'S... OUR SOCIETY,
WE'RE SO BENT ON ACHIEVEMENT.
AND, YOU KNOW,
ARE WE MORE OF A HUMAN BEING
IF WE CONTRIBUTE TO SOCIETY?
LIKE, DOES EVERYBODY GET TO CALL
THEMSELVES A HUMAN BEING?
YOU KNOW, WHEN WE... WHEN WE LOOK
AT ACHIEVEMENT AS BEAUTY
AND HOMES AND MARRIAGES
AND BABIES
AND ALL OF THE SET POINTS,
THE BENCHMARKS
THAT WE CONSIDER SUCCESS... THEN PEOPLE
WITH MENTAL ILLNESS THEN
ARE MOVED OFF THE GRID.
SO, I TRY VERY HARD TO HELP THEM
FIND WAYS TO FEEL PURPOSEFUL.
AND IT'S NOT GOING TO BE WHAT
THEY HAD SET OUT TO DO
WHEN THEY WERE IN HIGH SCHOOL.
THEY HAD DREAMS TO DO A PHD;
THEY HAD DREAMS;
AND, YOU KNOW, THE ILLNESS ROBS
THEM OF THEIR EARLIER DREAMS.

NAM SAYS BUT THEIR LIFE STILL MATTERS.

Susan says THEIR LIFE STILL MATTERS.
AND THE ONES THAT CAN MOVE... INTO ACCEPTING THE SYMPTOMS,
AND FIND A NEW WAY
TO HAVE PURPOSE, THOSE... THAT'S
THE RECOVERY OF MENTAL ILLNESS.

Nam says YOU ALSO TELL THE STORY OF
ANDREW WHO IS UNMEDICATED...

SUSAN SAYS RIGHT...

Nam says BUT WHOSE,
WHAT YOU WRITE,
"CLEAN LIFESTYLE WILL
HELP HIM LIVE LONGER
THAN OTHER SCHIZOPHRENICS."
HOW BIG AN IMPACT
ON LIFE EXPECTANCY
DOES SCHIZOPHRENIA
TYPICALLY HAVE?

Susan says IT'S ABOUT 20 YEARS LESS
THAN THE AVERAGE PERSON.
AND IT'S A COMBINATION
OF... WELL, LACK OF MOTIVATION
IS ONE OF THE SIDE EFFECTS
OF HAVING SCHIZOPHRENIA,
SO THEY TEND NOT TO EXERCISE.
THE MEDICATION
MAKES THEM LETHARGIC.
IT CAUSES OBESITY,
LUNG PROBLEMS.
THEY ALL SMOKE LIKE CHIMNEYS.
SO, THE COMBINATION
OF ALL OF THOSE FACTORS
LOWERS THEIR LIFE EXPECTANCY
BY 20 YEARS, SO.
WE ONLY HAVE

Nam says LIKE A FEW SECONDS LEFT...

SUSAN SAYS OH, THANK YOU...

Nam says BUT MOVING FORWARD,
HOW MUCH TIME AND ENERGY
ARE YOU GOING TO BE ABLE
TO CONTINUE TO DEVOTE
TO VOLUNTEERING,
NOW THE BOOK IS FINISHED?

The caption changes to "On a personal note."

Susan says OH, I WORK THERE EVERY TUESDAY.

NAM SAYS YEAH.

Susan says I'M AT THE DOUGLAS.
I LOVE BEING ON CPC-3,
WHICH IS PSYCHOTIC DISORDERS.

NAM SAYS DOES IT IMPACT YOU AT ALL,
LIKE YOU AND YOUR FAMILY?
'CAUSE YOU'RE DEALING
WITH PEOPLE
WHO PEOPLE
WANT TO FORGET,
AND WHO ARE GOING
THROUGH A REALLY HARD TIME.

Susan says DO YOU KNOW, I HAVE BEEN
AS PROFOUNDLY AFFECTED
BY MY FRIENDSHIPS
AS THEY HAVE BEEN.
IT'S MY PURPOSE IN MY LIFE TOO.
NO, I LOVE EVERY MINUTE
OF WHAT I DO.
I REALLY DO.

NAM SAYS AND YOU'LL CONTINUE
TO VOLUNTEER?

Susan says I WILL; I WILL!

The caption changes to "Producer: Gregg Thurlbeck, @GreggThurlbeck."

NAM SAYS YEAH.
WELL, THANK YOU SO MUCH
FOR WRITING THIS BOOK.
IT'S A FANTASTIC BOOK.
AND I THINK THERE'S SO MUCH
THAT WE CAN GIVE TO OTHER PEOPLE
WITHOUT THEM HAVING TO ASK.
WE CAN BE MORE KIND TO... I GUESS
TO EACH OTHER.

SUSAN SAYS YES.

Nam says BECAUSE YOU NEVER KNOW.

SUSAN SAYS YES.

Nam says ANYONE CAN... THIS CAN HAPPEN
TO ANYBODY.
YES, IT CAN; IT CAN!

NAM SAYS THANK YOU SO MUCH
FOR BEING HERE.

Susan says OH, I LOVED OUR INTERVIEW.
THANK YOU, NAM.
THANK YOU.

NAM SAYS THANK YOU.

Watch: Inside Schizophrenia's Fractured Landscape