Transcript for the Piece Audio version of A Burden to be Well: Sisters and Brothers of the Mentally Ill

A BURDEN TO BE WELL:
SISTERS AND BROTHERS OF THE MENTALLY ILL

INTRODUCTION:

KARI: THIS IS ?A BURDEN TO BE WELL: SISTERS AND BROTHERS OF THE MENTALLY ILL?, A RADIO DOCUMENTARY.
THE DEVASTATING EFFECTS OF MENTAL ILLNESS HAVE BEEN WELL DOCUMENTED IN FILMS, BOOKS, AND ACADEMIA. BUT UNTIL RECENTLY, THERE'S BEEN LITTLE SAID ABOUT THE SISTERS AND BROTHERS OF THE MENTALLY ILL. IF ? AS MANY EXPERTS AGREE -- ONE OUT OF FIVE AMERICANS HAS A SERIOUS MENTAL ILLNESS ? THAT?S 40 MILLION PEOPLE ? WHICH MEANS THEIR SIBLINGS MUST NUMBER AT LEAST TWICE THAT MANY. A BODY OF RESEARCH ON WHAT?S CALLED A ?WELL-SIBLING? SYNDROME IS STARTING TO EMERGE ? ALONG WITH A GROWING NUMBER OF PERSONAL MEMOIRS. COMING UP, WFCR?S KAREN BROWN BRINGS US TWO INTIMATE SIBLING PORTRAITS. BUT FIRST, SHE TALKS TO A RANGE OF SIBLINGS AND EXPERTS ON THE WAYS MENTAL ILLNESS AFFECTS ITS CLOSEST BYSTANDERS.

PART ONE: OVERVIEW
[MUSIC?]
?I often feel like this sort of genetic bullet was fired and it nicked me and it hit Debbie right in between the eyes.? (Lusignan)

I have at times resented my brother for taking up so much time and room and space and terrorizing and anguishing my parents so much. LARRY

At one point, my parents gave me a hook and eye for my door, this is when my sister was killing my pets, and when I later confronted my mother about it, she said, what could we do? She was our daughter too. (clea simon)

?my mom used to say when I was in my twenties, "Larry, you're at the bottom of my worry list." And I'd say, "I don't like that!? Because I have my own worries. I have my own concerns.

but you know, my family needed someone like me and, you know, you can't have everyone going crazy. [LARRY RUHF]

[fade out music]

IN RECENT YEARS, SIBLINGS HAVE STARTED TO SPEAK OUT ABOUT THE TRAUMA, THE GUILT, AND THE HIDDEN RESENTMENT OF GROWING UP WITH BROTHERS OR SISTERS WITH SEVERE MENTAL ILLNESS ? CONDITIONS LIKE SCHIZOPHRENIA, BIPOLAR DISORDER, OR MAJOR DEPRESSION. MANY WELL SIBLINGS FELT IGNORED WHILE THEIR ILL SIBLING SWALLOWED THE FAMILY?S ENERGY AND ATTENTION. NO ONE SEEMED TO NOTICE WHAT THE ILLNESS WAS DOING TO THE SO-CALLED HEALTHY ONE.

Simon: we both had pet hampsters. 0:14:05.6 and i remember one of her games ? was holding her hands up and letting the hampsters run up and down the keyboard of the piano. and having her slam down the lid of the keyboard and kill my hampster. ? but to me, it was like don?t complain when your pet gets killed because you could be next.

THAT?S CLEA SIMON, A BOSTON JOURNALIST WHO WROTE THE MEMOIR ?MADHOUSE: GROWING UP WITH A MENTALLY ILL BROTHER AND SISTER.? BOTH OF HER OLDER SIBLINGS WERE STRUCK WITH SCHIZOPHRENIA WHEN CLEA WAS ONLY SIX. SIMON?S SISTER ? AT SIXTEEN -- BECAME VIOLENT AND THREATENING, UNTIL SHE WAS SENT TO A GROUP HOME. HER BROTHER TRANSFORMED FROM A BELOVED NURTURER TO A PARANOID LONER WHO EVENTUALLY COMMITTED SUICIDE.

?When you see your brother or sister grow up and change from your brother and sister to something scary and weird and alien, you just think that?s what happens. You think that when you hit sixteen, you?re allowed to date, and drive, and then you?re hospitalized.?[CLEA SIMON]

(L Ruhf ? ghost) it?s almost like my brother died at 22 and lived as a ghost for the next 45 years.

LARRY RUHF OF SHELBURNE FALLS, MASSACHUSETTS WAS IN HIGH SCHOOL WHEN HIS OLDER BROTHER JACK DESCENDED INTO SCHIZOPHRENIA.

?we?d have to visit him every Sunday. My mom would make us visit him. We?d have to go ? into this terrible Edgar Allan Poe type state hospital that smelled? and listen to my brother rant and rave and beg us to take him home.? [LARRY RUHF]

RUHF AND SIMON ? BOTH SEPARATELY ? BELIEVE THEY NOW SUFFER FROM POST TRAUMATIC STRESS DISORDER ? A COLLECTION OF DEBILITATING SYMPTOMS, FROM FLASHBACKS TO NIGHTMARES ? USUALLY SEEN IN PEOPLE WHO?VE BEEN IN COMBAT, ATTACKED, OR WHO?VE WITNESSED SOMETHING TERRIBLE.
MARSH: a family will go from one crisis to another, and there is very little time or effort to explain to siblings what's going on, and so that makes it more likely there would be these PTSD, ? symptoms decades later.

UNIVERSITY OF PITTSBURGH PSYCHOLOGIST DIANE MARSH WROTE THE BOOK, TROUBLED JOURNEY, ABOUT FAMILIES AND MENTAL ILLNESS. MARSH CONDUCTED ONE OF THE FIRST STUDIES OF WELL SIBLINGS OF THE MENTALLY ILL.
MARSH: I kept noticing that they were talking about what we might call emotional numbing. That they had at some level and sometimes fully lost the capacity to feel. ?. 0:14:10.7

OR, AS REX DICKENS, MARSH?S CO-AUTHOR AND HIMSELF THE BROTHER OF THREE MENTALLY ILL SIBLINGS, PUTS IT ? SIBLINGS, LIKE HIM, ARE FROZEN SOULS.
Dickens: You sort of shut down, emotionally, in part of your life, and that carries over to other areas?.you can?t trust, you can?t feel, you can?t talk?. There?s a core that gets frozen in time, maybe to be dealt with later, but it never does get dealt with.

MARSH AND DICKENS FOUND THAT WELL SIBLINGS HAVE HIGHER RATES OF DEPRESSION THAN THE GENERAL PUBLIC, AND MAY FEEL IT?S UP TO THEM TO MAKE UP FOR THEIR FAMILY?S LOSS.
MARSH: they are the perfectly behaved chidren, the A students, ?because their family was fragile and couldn't afford any other problems. And so they felt um... as one siblings put it, a burden to be well.

Dickens: when you have to grow up early, when you pick a fruit that's, you pick it too green, it doesn't have a chance to mature and ripen?. They get kind of stopped in their development.

OTHERS WORRY THEY MIGHT ?CATCH? WHAT THEIR BROTHER OR SISTER HAS?.. PSYCHOLOGIST JEANNIE SAFER WROTE THE BOOK, ?THE NORMAL ONE;? HER OWN BROTHER WAS SEVERELY DEPRESSED, ERRATIC, AND OBESE. AND EVEN THOUGH SHE BECAME A WELL-KNOWN WRITER AND ACCOMPLISHED THERAPIST, SHE?S NEVER FELT IMMUNE FROM HER BROTHER?S FATE.
if I wasn't so brilliant one day, or if I didn't have a friend, or if god forbid I gained some weight,it became devastating because I could always turn into him. So he was the side of me that was dark and terrifying. [JEANNE SAFER]

CERTAINLY, ALL FAMILIES ARE DIFFERENT, BUT A COLLECTION OF COMMON SYMPTOMS IS NOW PORTRAYED IN RESEARCH LITERATURE AS A ?SIBLING SYNDROME.? ONE OF THE CORNERSTONES IS SURVIVOR?S GUILT ? WHY WAS MY SISTER OR BROTHER AFFLICTED? WHY NOT ME?
MARSH: That somehow, through nothing they had done or not done, from a stroke of fate, they had been saved from this horrible fate.

PSYCHOLOGIST DIANE MARSH.

And as they mature and they go on to careers and relationships and families, over and over again we heard that it is with a sense of loss for their sibling who may not be able to move on, to have that kind of meaningful and productive life in adulthood. So it's as if a shadow is cast over their own accomplishments. 0:24:46.2

AS SIBLINGS AGE, THERE ARE PRACTICAL CONCERNS BEYOND THE EXISTENTIAL ONES. IN ONE CLINICAL SURVEY, 94 PERCENT OF WELL SIBLINGS REPORTED A PERVASIVE WORRY THAT THEY WILL HAVE TO TAKE RESPONSIBILITY FOR A MENTALLY ILL BROTHER OR SISTER WHEN THEIR PARENTS NO LONGER CAN. PETER RUHF CARED FOR HIS BROTHER JACK FOR MORE THAN TWENTY YEARS.

PETE: once a week I'd take him to this diner. And I would feed him. And he would be like this wild animal. And I would say, "anything you want." Eat and eat and eat and he would eat meat loaf, mashed potatoes and he had no teeth, they were all rotted and his hair was, you know, whatever, and he'd be smoking. And he never said thank you, nothing.

THERE ARE FAMILY SUPPORT GROUPS GEARED TO PARENTS OF MENTALLY ILL CHILDREN, BUT VERY FEW DESIGNED FOR SIBLINGS. PSYCHOLOGIST JEANNIE SAFER, WHILE DOING RESEARCH FOR HER BOOK, TRIED IN VAIN TO FIND CLINICAL INFORMATION ON SIBLING ISSUES.
?I went to the 404 page index of Freud's complete works. There are no references to siblings. There is, however, reference to Siberia. I have this fantasy that that?s where all the siblings went!? JEANNE SAFER

BUT THE GOOD NEWS, SHE SAYS, IS THAT MORE SIBLINGS ARE FINDING EACH OTHER ? CREATING THEIR OWN COMMUNITY AND SEEKING HELP. [Start music here?] CLEA SIMON SAYS, AFTER YEARS OF THERAPY, SHE WAS FINALLY ABLE TO CONFRONT AND MAKE PEACE WITH HER PAST.
Simon: I think it takes a lot of strength to face something awful and not be Pollyana about it and say, ?Oh, it wasn?t that bad and I really understand my sister now.? I think that?s crap. I think it?s awful and it changes your life and it changes who you are ? and if you can accept that, then you live your life now.?

[MUSIC BRIDGE]

PART TWO ? HEEDING THE ?WELL? CHILDREN

HOW SIBLINGS FARE WHEN EXPOSED TO SERIOUS MENTAL ILLNESS? DEPENDS GREATLY ON WHEN THE ILLNESS SURFACES - AS DIANE MARSH OF THE UNIVERSITY OF PITTSBURGH FOUND IN HER 1997 SIBLING STUDY.
MARSH: 0:02:08.0 ? The younger they were, and this was a strong finding, the more vulnerable they were and the more devastating the legacy that they carried on.

IN FAMILIES WHERE MENTAL ILLNESS HITS EARLY, THE ENTIRE HOUSEHOLD FEELS THE IMPACT. PARENTS COPING WITH ONE WILD AND UNPREDICTABLE CHILD ?.. HAVE THE ADDED CHALLENGE OF RAISING OTHER CHILDREN, WHO ARE IN THE MIDDLE OF THEIR OWN DEVELOPMENT.
[START AMBI]
DEB to olivia: We're not having any more soup! eat it or don't have any!0:11:20.3 OLIVIA: "screams!" eat what you have -- "then i want more!!" llisten olivia, either take what you have or don't have any. -- sounds of spoon clanging on floor -- and now you can pick that up too! "NO!!"

THIS, I?M TOLD, IS A RELATIVELY CALM AFTERNOON AT THE STANAS HOUSEHOLD IN SOUTHERN NEW HAMPSHIRE. 8-YEAR-OLD OLIVIA IS BOUNDING BETWEEN THE KITCHEN, WHERE SHE?S DEMANDING A SNACK FROM HER MOTHER DEB, AND THE LIVING ROOM, WHERE HER TWO SISTERS ARE DOING HOMEWORK AND PLAYING COMPUTER GAMES. SUDDENLY, OLIVIA ACCUSES HER 11-YEAR-OLD SISTER AUDREY OF TAKING HER TOY ? AND HER MOTHER TELLS AUDREY TO GO TO HER ROOM.
DEB: one, two ? AUD: ?do you know what a baby she's being.? 0:22:19.5. ? she slapped rose a minute ago, she slapped me a minute ago, - DEB: you know better than to do that? liv: screams! [SHORTEN]

DEB: olivia sets the tone in the house. when she's having a bad day, we're all having a bad day. it's next to impossible not to feed off that irritability, that anxiety, that anger.

TWO YEARS AGO, AT THE AGE OF 7, OLIVIA WAS DIAGNOSED WITH BIPOLAR DISORDER ? AN ILLNESS CHARACTERIZED BY DEBILITATING HIGHS AND LOWS, AND OUTBURSTS OF VIOLENCE. HER MOTHER SAYS IT?S BEEN TORTURE FOR HER OLDER SISTER AUDREY.
audrey would be jumping on the trampoline this spring with her, and all of sudden, audrey would come in. through her jeans, she has a big bite mark. or we'd be in the car, and she'd be screaming, i'm so mad i need to bite someone. she'd lean over and try to bite her sister!

DICKENS: it traumatizes the family and it ends up traumatizing each individual.

AUTHOR AND ADVOCATE REX DICKENS ?WHO ? LIKE AUDREY ? WATCHED HIS ILL SIBLINGS BECOME OUT OF CONTROL. HE CONSIDERS HIMSELF AND OTHER WELL SIBLINGS ?SECONDARY VICTIMS? OF MENTAL ILLNESS.

somebody that has to live with trauma day in and day out?.. and the odd deal is, there?s no one to blame.

[MUSIC BRIDGE??]

[HOME AMBI ? ?hi audrey??.. cooking noodles

ON THIS AFTERNOON, AUDREY STANAS HAS JUST GOTTEN OFF THE SCHOOL BUS. SHE MAKES HERSELF RAMEN NOODLES AND RELISHES HAVING HER MOTHER ALL TO HERSELF. IT?S A HALF HOUR BEFORE OLIVIA GETS HOME. AS AUDREY EATS, SHE RECALLS THE TIME OLIVIA?S OUTBURST SENT HER TO THE EMERGENCY ROOM.

AUDREY: She started calling me a name, and next thing I know, she says, i'm going to throw this book at you. ?and i turned around -- and it hit my face. and it was bleeding. and i remember screaming 0:36:15.4 down the wall and watching the blood drip down my face. ? i don't believe she ever got grounded for that!

HER MOTHER IS WELL AWARE OF THE RESENTMENT AUDREY FEELS ? THAT HER CHILDHOOD IS, IN MANY WAYS, AT THE MERCY OF OLIVIA?S VOLATILITY. FOR A SHORT TIME, THEY TOOK AUDREY TO A COUNSELOR.
she was so angry. she was threatening suicide. i'm gonna run away. i hate this family. i can't live here.0:16:46.3 and to be quite honest, what she went thru, i can't blame her. --she really got abused by this chil-- and i couldn't separate them. i felt so helpless. i couldn't protect her.

SHE SAYS SHE DOES TRY TO KEEP AUDREY SAFE FROM OLIVIA?.SHE PUTS THEM ON OPPOSITE ENDS OF THE HOUSE, BUT AS SOON AS SHE TURNS HER BACK, OLIVIA RUNS TO FIND HER SISTER. DEB INSTALLED A LOCK ON THE DOOR TO AUDREY?S ROOM, BUT OLIVIA FOUND THE KEY.

AUD: they should have her locked in the laundry room again -- that worked.

HER MOTHER IS ACTUALLY RELIEVED THAT AUDREY CAN BE SO BLUNT, LIKE A TYPICAL CHILD. BECAUSE SHE WORRIES AUDREY?S GROWING UP TOO FAST?.
OFTEN, AFTER A DISASTROUS DAY WITH OLIVIA, SHE?S LIKELY TO TURN TO HER ELDEST DAUGHTER FOR BACK-UP.
Deb: and she'd be able to take her sister and turn her around, and get her calm down, and do something to diffuse the situation.0:17:58.3 and i'd thank god so many times that she would do that for me, and i felt so guilty, bc here's my 9 year old daughter, having to be in this role to help her sister and help me.

SAFER: It?s hard on you in later life, because you have not had a childhood. You?ve been your mother?s keeper and your sister?s keeper. ?

JEANNE SAFER.?PSYCHOTHERAPIST AND AUTHOR.OF THE BOOK, THE NORMAL ONE.

Safer: it is virtually universal for role reversals to occur. the higher functioning child becomes a parent. She becomes what one person called the ?family vice president.? So she has a lot of responsibility and no power!?.

[MUSIC BRIDGE?]

OLIVIA IS MORE STABLE NOW SINCE HER PSYCHIATRIST CHANGED HER MEDICATION. AND THAT?S MADE IT EASIER FOR DEB AND HER HUSBAND TO GIVE AUDREY DAYS WHEN SHE?S THE CENTER OF ATTENTION.
[CHEERLEADING AMBI ? go team go!]

RECENTLY, AUDREY COMPETED IN A CHEERLEADING TOURNAMENT, WHERE SHE WAS SELECTED, WITH A FRIEND, TO SING THE NATIONAL ANTHEM. THE WHOLE FAMILY WATCHED ? EVEN OLIVIA -- AS SHE SANG BEFORE A PACKED AUDITORIUM. [SINGING ??oh say can you see??. FADE UNDER]
BUT HER MOTHER WONDERS IF SPECIAL OCCASIONS LIKE THIS ARE ENOUGH TO INSULATE AUDREY FROM THE STRESS OF THEIR HOUSEHOLD?..DIANE MARSH SAYS THAT?S A VALID FEAR.
MARSH: as hard as parents may try, and they do, to meet the needs of their well siblings, time and energy are simply finite. And so siblings often feel like the forgotten family members. Everyone else's problems are more important than theirs

11-YEAR-OLD AUDREY:

AUDREY: when olivia is being a jerk, and doing weird things. And?i'll be downstairs asking for a question on my homework, and they'll say, Audrey -- go away now. and won't give me anything. until they're done with her, which takes until like midnight to calm her down.

AND HER MOTHER, DEB STANAS.

DEB (starting to cry): it would be so intense with olivia, by the time i finally got her to bed, audrey would say, please mommy, just come with me, lay down with me, and by then, my whole body was just -- i can't have anyone touch me. i just need to be quiet without anyone. and so there were days i'd say, i can't Audrey. i can't even go in there. i just need to go in my own bed. (crying...) and be alone. ? and it breaks my heart that i even said that to her bc she deserves so much more, you know.

[MUSIC BRIDGE]
PART THREE:

THE SIBLING SYNDROME IS NOT UNIQUE TO CHILDHOOD. LIKE MENTAL ILLNESS, IT OFTEN ENDURES AND EVOLVES OVER THE LIFESPAN OF SIBLINGS. PAM AND CAROLYN SPIRO KNOW THIS WELL. THEY?RE TWIN SISTERS -- RELAXING IN PAM?S HIGH-RISE APARTMENT NEAR HARTFORD CONNECTICUT.
?for some reason, this leg is pins and needles. Do you need slippers? No, I?m just trying to shake it into life?. ?..[fade into room tone]

AT 52, BOTH ARE BLOND AND PETITE, WITH LONG, NARROW FACES. BUT ONE OF THEM LOOKS MORE WEATHERED, LESS GROOMED, WITH SKIN STRANGELY SCARRED. YOU MIGHT STILL NOT KNOW WHO?S DIAGNOSED WITH SEVERE MENTAL ILLNESS?. UNTIL PAM STARTS TO TALK ABOUT HER BREAKFAST CONVERSATION.
?the cup, the tea cup was saying to me, there?s a chip in me and it really hurts when you drink out of that side, L: did it ever occur to you that maybe the tea had an opinion too. P: well, it might have. FADE UNDER]:20:29.8

CAROLYN IS HUMORING HER SISTER ? SHE KNOWS A TALKING TEACUP IS AN AUDITORY HALLUCINATION, A REMINDER OF PAM?S ONGOING STRUGGLE WITH SCHIZOPHRENIA. IT?S ONLY THE LATEST CHARACTER IN PAM?S LONG HISTORY OF MENTAL ILLNESS, A HISTORY THAT?S SADLY MARRED HER LIFE AS WELL AS HER TWIN SISTER?S. YOU COULD SAY IT STARTED AS EARLY AS THEIR BIRTH ? WHEN, ACCORDING TO SOME SCIENTISTS, THE SEED OF SCHIZOPHRENIA WAS LIKELY PLANTED IN PAM, BUT NOT IN CAROLYN.
genes play some role in virtually every important chronic disease that the human is subject to, But rather than causing these, they're rather predisposing.

PSYCHIATRIST FULLER TORREY ? OF THE STANLEY MEDICAL INSTITUTE IN D.C. -- IS HEADING A NATIONAL STUDY TO DETERMINE WHY ONE TWIN GETS MAJOR MENTAL ILLNESS AND THE OTHER DOESN?T. HE NOW BELIEVES IT COMES DOWN TO AN INFECTIOUS AGENT OR A VIRUS, ALTHOUGH THEY HAVEN?T YET IDENTIFIED WHICH KIND. IN SOME CASES, TORREY SAYS, A PREGNANT MOTHER CONTRACTS A VIRUS OR INFECTION BUT ONLY PASSES IT ONTO ONE CHILD.
[if you think of a virus coming and has to turn right or turn left and it goes one way or the other. The other possibility, which i think is a larger possibility, is that ? 0:10:52.0 the majority of cases probably become infected in childhood after the child is born, in which case ? one of the twins in this case is exposed to the infectious agent, and the other one was not.]

WHEN PAM AND CAROLYN WERE CHILDREN, THEY BOTH SEEMED FINE. LIKE MANY TWINS, THEY WERE BEST FRIENDS AND BITTER RIVALS. THEY EVEN COMPETED FOR THINNESS ? TO THE POINT THAT BOTH WERE TREATED FOR ANOREXIA NERVOSA. BUT NO ONE IN THE FAMILY ? NOT THEIR OTHER TWO SIBLINGS, NOR THEIR PARENTS ? NOTICED WHEN PAM FIRST BEGAN TO HEAR VOICES. IT WAS NOVEMBER 22ND, 1963.

CRONKITE (news footage.) ?From Dallas, Texas, the flash apparently official, President Kennedy died at 1pm, eastern standard time,? (fade under)

WHILE SITTING IN A GRADE-SCHOOL CLASSROOM?? WHILE EVERYONE ELSE WAS RIVETED BY THE NEWS OF JFK?S ASSASSINATION? PAM BEGAN TO HEAR MURMURING IN HER HEAD.
PAMMY : at first, they weren't saying anything. then they were just saying my name. 0:12:26.0 and they were mangling it -- pam, spam, piro, spiro, piro. and then they started saying, kill, kill you, kill him, will you, kill you, ? the message was a realization that I had killed kennedy.

THAT BECAME HER NEW REALITY ? A BELIEF SHE HAD THE POWER TO KILL THROUGH HER OWN THOUGHTS ? PAM TOLD NO ONE OF THE MENACING VOICES NOW FILLING HER HEAD. BUT CAROLYN COULD TELL SOMETHING CHANGED.

LYNNIE: she was going to school with greasy hair, greasy face, and looking disheveled and embarrassing me.

Thoring: There?s a lot going on in the backseat of the car the parents don?t really know about.

HELLE THORING OF NEW YORK STATE PSYCHIATRIC INSTITUTE.
the well sibling who has a sibling getting ill is often the first person to notice something is going on?.and they might also be exposed to some strange and bizarre behavior that they don?t really know how to understand.

CAROLYN AND PAM SPIRO STUCK TOGETHER AFTER HIGH SCHOOL. THEY BOTH WENT TO BROWN UNIVERSITY, WHERE CAROLYN THRIVED ? BUT PAM FELL DEEPER INTO PARANOIA AND HALLUCINATIONS.

[LYNNIE: I would see her sometimes in the cafeteria sitting alone in the, in a corner. I'd occasionally stop by her room and find her sort of barricaded in the corner with her desk or behind the door. CAROLYN SPIRO]

PAMMY: She knew I was burning myself with, like, 10 cigarettes in a wad at a time. ? So I would just say things like, I feel numb, I feel like moon rock. But what I wouldn't say is, is that there were also voices saying, "you'll feel better if you burn yourself."

AND THEN ? PAM TRIED TO KILL HERSELF WITH AN OVERDOSE OF SLEEPING PILLS. SHE LEFT COLLEGE AND MOVED BACK HOME. THAT?S WHEN CAROLYN STARTED TO PULL AWAY.
LYNNIE: It was some sense of apprehension about being around her for fear that I'd lose the sense of separateness ? Like, for years, I did have this feeling that if Pammy got better, what then? Will I either have to relinquish who I am or will I lose who I am?

Safer: when you have a brother or sister who doesn?t function, you are far too merged with their identity, whether consciously or unconsciously?.

PSYCHOLOGIST AND AUTHOR JEANNE SAFER.

Whether it takes the form of saying, I had nothing to do with that person, or you say, oh, I?m almost schizophrenic. It?s like you?re never totally separate.

AS MUCH AS CAROLYN TRIED TO LEAD HER OWN LIFE, SHE MADE CHOICES VERY MUCH CONNECTED TO PAM?S FATE. SHE BECAME A PSYCHIATRIST?.. AND SHE MARRIED YOUNG, SOMETHING SHE NOW THINKS WAS HER WAY OF PROVING SHE WAS NORMAL. DURING THESE YEARS, PAM HAD LUCID STRETCHES WHERE SHE HONED HER WRITING SKILLS AND WON AWARDS FOR POETRY. BUT THE VOICES ALWAYS CAME BACK, AND CAROLYN GOT FREQUENT CALLS FROM EMERGENCY ROOMS WHERE PAM ENDED UP.
At that point ? I was at my wit's end because she was becoming desperately suicidal, they were treating her like she had a terminal illness, ?Ya know, ya might want to consider saying goodbye'

[MUSIC BRIDGE]

PAM DID SURVIVE, AFTER DOZENS OF EPISODES OVER THREE DECADES, SOME NEAR FATAL. ONLY RECENTLY DID SHE FIND A MEDICATION THAT?S KEPT THE VOICES AT BAY. [START LECTURE AMBI] PAM AND CAROLYN HAVE NOW TOLD THEIR STORY IN A NEW MEMOIR CALLED ?DIVIDED MINDS: TWIN SISTERS AND THEIR JOURNEY THROUGH SCHIZOPHRENIA.? IN RECENT MONTHS, THEY?VE BEEN ON A BOOK TOUR, WHERE THEY TRADE OFF READING PASSAGES AT COLLEGES AND BOOKSTORES.
PAM: ?would you mind turning off the radio?? I ask the taxi driver. It?s hurting my ears?.. head turned toward me, ?lady, you must be hearing things, cuz the radio ain?t on.?. (fade under)

THE BOOK WASN?T EASY TO PULL OFF, AS PAM WAS HOSPITALIZED SEVERAL TIMES DURING THE WRITING PROCESS. AND THE TOUR HAS BEEN A STRAIN, SINCE PAM GETS TIRED EASILY AND DOESN?T LIKE CROWDS. IT?S ALSO FORCED THE SISTERS TO SPEND MORE TIME TOGETHER THAN THEY HAVE IN YEARS?..FOR BETTER OR WORSE. PAM?S PARANOIA IS NEVER ENTIRELY GONE.
EVEN IN THE MIDDLE OF THE TOUR, SHE?S STILL HALLUCINATING ABOUT SOMETHING SHE CALLS THE ?HAZMAT MAN.? THAT?S A FIGURE PAM SEES WHEN SHE LOOKS AT THE HAZARDOUS MATERIALS EMBLEM ON HER PLASTIC MEDICAL BAGGIES. CAROLYN TRIES TO EMPATHIZE.
L: i think i see what you're talking about. yeah, the eyebrows. P: no, the head is up here. the arms are over here. L: no i don't. k: is it threatening?P: it's not threatening now, because i know where the real hazmat man is?L: he's locked up in an altoid box, [double duct taped. [fade under]

THIS IS WHERE CAROLYN?S FACE GOES FROM BEMUSED, TO EXASPERATED.

L: (to pam) you don't really believe that, do you? i mean, i have the box, and it's still taped up -- P: keep it taped. L: i do! but you don't really believe this, do you? [i mean, in all honesty. P: just keep it taped up.] {fade under?)

LYNNIE: There are times when it feels like a lot. When I am getting behind in my own bills, when she's getting sick, when she's deciding on her own not to take medication, which she?s not doing at the moment? then I feel it, oh yeah. then it's an imposition, then I hate it, "Yeah YOU'VE got the freedom to not take medication because... your're independent ... you get to do what YOU want when you want to do it and ?and the hell with whatever I want. And guess whose freedom you get to take away? Mine.

[MUSIC BRIDGE]

THESE DAYS, CAROLYN HAS A NEW WORRY ABOUT HER TWIN SISTER.

AMBI?.

Did you have anything to eat? "i had pomegranite juice." oh, that's a lot to eat. [fade under]

PAM?S BEEN LOSING WEIGHT RAPIDLY ? SHE?S UNDER 90 POUNDS. HER JEANS BARELY HANG ON HER HIPS, AND GIVEN HER HISTORY WITH ANOREXIA, THE DOCTORS ARE CONCERNED. DURING THIS VISIT, CAROLYN GETS PEANUT BUTTER OUT OF HER FRIDGE ? AND BEGS PAM TO EAT.

you need more calories to maintain your weight.... so you have clothes on your body that don't fall off, and so that you don't get a cardiac arrhythmia, 0:16:00.0 --
p: i could have a heart attack?
L: I?ve already told you this a million times (fade under)

PAM STARTS TO TREMBLE AT HER SISTER?S SCOLDING, AND WALKS OUT OF THE KITCHEN, BUT THEN SHE COMES BACK AND LETS CAROLYN FINISH.

It?s no different than you not taking your anti-psychotic medication, for me. I can't stop you ! all i can do is sit and watch and feel ? anger, helplessness, despair. I mean, i have no control over you. i have no control over this. so once again, my future with you is linked to something i have no control over!0:14:37.4

THE SUBSEQUENT SILENCE LASTS FOR HALF AND HOUR, UNTIL THEY LEAVE FOR A DOCTOR'S VISIT FOR PAM -- ONE OF MANY THAT WAS SCHEDULED BY CAROLYN. AND EVEN THOUGH THEY LIVE AN HOUR APART, CAROLYN OFTEN DOES PAM'S GROCERY SHOPPING AND CLEANS HER APARTMENT. NEVERTHELESS, THEY BOTH CONSIDER THIS A RELATIVELY SMOOTH PATCH FOR PAM -- NOW THAT SHE'S FOUND AN EFFECTIVE MEDICATION FOR HER SCHIZOPHRENIA. THAT'S HELPED PAM RECOGNIZE HER IMPACT ON OTHER PEOPLE.

I made a vow when I got out of the hospital in February that I would take every single pill, liquid, potion, whatever they wanted me to take without fail and without question and I've pretty much lived up to that. ?52:21

BUT, AS CAROLYN IS KEENLY AWARE, SHE COULD HIT ANOTHER BAD PATCH. AND YET, AS MUCH AS SCHIZOPHRENIA HAS HURT THEIR LIVES AND THEIR RELATIONSHIP, CAROLYN SAYS SHE CAN?T IMAGINE A WORLD WITHOUT THE TWIN SISTER SHE LOVES, A SISTER WHO?S SENSITIVE AND SMART, BUT WHO CLEARLY DREW THE SHORT STRAW.
CAROLYN: ?I?m so lucky (cries). when i said earlier, that I don't deserve anything ? all I meant was none of us deserve anything really. we just get it. by grace of whatever. we just get it. i guess i think i could just as well be the one who got schizophrenia. [CAROLYN SPIRO]

[START BRINGING IN MUSIC?]

Dickens: well, that?s the fear of all siblings, there for the grace of God go they?.

AUTHOR AND SIBLING, REX DICKENS

i always believed it was in the genes, in the blood, and if you got it, you had it, and if you didn't have it, you didn?t have it. i just felt they were unlucky. not that i was lucky, but i wasn't unlucky.1:02:59.0 ? it was a tragedy they were unlucky.

SAFER: i think the legacy is you have to struggle to come into your own.0:48:20.6
that you have to struggle to feel you have a right to your life.

PSYCHOLOGIST JEANNIE SAFER.

that you must understand or work to understand the effect of having that sibling on you, and your goal should be to make recognizing your relship with that sibling important and essential, but not the center of your life.0:48:40.4

KARI: ?A BURDEN TO BE WELL: SISTERS AND BROTHERS OF THE MENTALLY ILL?, WAS WRITTEN AND PRODUCED BY WFCR?S KAREN BROWN ... IT WAS EDITED BY MARY BETH KIRCHNER FROM AMERICAN RADIOWORKS, WITH ADDITIONAL HELP FROM JOHN DANKOSKY. REPORTING WAS SUPPORTED BY A ROSALYN CARTER FELLOWSHIP IN MENTAL HEALTH JOURNALISM, AND BY A GRANT FROM JEAN BEARD. TO FIND OUT MORE, GO TO OUR WEBSITE -- WFCR.ORG.

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