METROFOCUS: FEBRUARY 24, 2020

A new film project “End of the Line” documents the inside story of the L-train shutdown that never was and the profound impact it had on thousands of New Yorkers. Designer Tommy Hilfiger’s daughter, Ally Hilfiger, shares the dramatic story of how Lyme disease landed her in a psychiatric ward and almost killed her.

Aired on February 24, 2020. 

TRANSCRIPT

TONIGHT ON METROFOCUS REMEMBER THE L-POCALYPS A NEW FILM DOCUMENTS THE L TRAIN SHUTDOWN THAT NEVER WAS AND THE PROFOUND IMPACT IT HAD ON THOUSANDS OF NEW YORKERS.

> THEN, AS NEW LYME DISEASE THREATS EMERGE ACROSS THE TRI-STATE AREA, TOMMY HILFIGER'S DAUGHTER ALLY SHARES THE DRAMATIC STORY HOW A SINGLE TICK BITE ULTIMATELY LED HER TO A PSYCH WARD AND NEARLY DESTROYED HER LIFE.

THOSE STORIES AND MORE AS 'METROFOCUS' STARTS RIGHT NOW.

THIS IS 'METROFOCUS' WITH RAFAEL PI ROMAN, JACK FORD, AND JENNA FLANAGAN.

'METROFOCUS' IS MADE POSSIBLE BY JAMES AND MERRYL TISCH, SUE AND EDGAR WACHENHEIM III, THE SYLVIA A. AND SIMON B. POYTA PROGRAMING ENDOWMENT TO FIGHT ANTI-SEMITISM.

BERNARD AND IRENE SCHWARTZ, ROSALIND P. WALTER, BARBARA HOPE ZUCKERBERG, AND BY --

> GOOD EVENING AND WELCOME TO 'METROFOCUS.'

I'M RAFAEL PI ROMAN.

IT WAS TO BE PERHAPS THE GREATEST PLANNED DISRUPTION TO NEW YORK CITY PUBLIC TRANSPORTATION IN HISTORY.

THE DECISION IN 2016 TO COMPLETELY SHUT DOWN THE L TRAIN FOR 15 MONTHS TO REPAIR TUNNEL DAMAGE CAUSED BY HURRICANE SANDY SENT HUNDREDS OF THOUSANDS OF COMMUTERS INTO A PROLONGED PANIC.

AND FOR THREE YEARS, AS THE LOOMING L-APOCALYPSE THROUGH CLOSER, RESIDENTS WHO RELIED ON THE L TRAIN TO GET AROUND THE CITY WERE FORCED TO RETHINK THEIR COMMUTES EVEN THEIR LIVES.

MANY DECIDED TO MOVE RATHER THAN STICK AROUND, AND A FEW BUSINESS OWNERS CLOSED OR CONTEMPLATED CLOSING SHOP RATHER THAN TAKE THE INITIAL RISK.

THE INITIAL ANGER OVER THE PROJECT WAS FOLLOWED BY RESIGNATION.

THIS WE'RE ALL TOLD WAS THE WAY IT HAD TO BE.

AND THEN JUST LIKE THAT, THREE SHORT MONTHS BEFORE WORK WAS ABOUT TO BEGIN, THE L-POKALYPSE WAS NO MORE.

GOVERNOR CUOMO ANNOUNCED A COMPLETE SHUTDOWN WOULD NOT BE NECESSARY AFTER ALL.

WHAT WE GOT INSTEAD WAS AN L TRAIN SLOWDOWN WHICH FROM MOST ACCOUNTS HAS GONE WITHOUT A HITCH AND IS EVEN EXPECTED TO FINISH THREE MONTHS AHEAD OF SCHEDULE.

SO WHAT'S THE REAL STORY?

WHAT HAPPENED BEHIND THE SCENES?

? WHAT IMPACT DID IT HAVE ON THE THOUSANDS OF PEOPLE WHO WERE LEFT IN LIMBO FOR THREE YEARS?

THAT'S THE SUBJECT OF AN UPCOMING DOCUMENTARY BY A NEW YORK FILMMAKER WHO HAS BEEN DOCUMENTING THE SAGA SINCE IT WAS FIRST ANNOUNCED BACK IN 2016.

THE FILM, STILL IN PRODUCTION, IS CALLED 'END OF THE LINE.'

HERE'S A LOOK.

NOT LET IT GO.

WE'RE TELLING PEOPLE UP FRONT THIS IS A VERY BIG DEAL.

THE SHEER MAGNITUDE OF THE L TRAIN SHUTDOWN IS BEING ACKNOWLEDGED.

THIS IS UNPRECEDENTED.

NO ONE UNDERSTANDS HOW BAD THIS IS GOING TO BE WHEN IT HAPPENS.

IT'S LIKE YOUR ONLY BRIDGE TO THE MAINLAND GOT CUT.

THIS LINE WAS REALLY DAMAGED WHICH SANDY.

THERE WAS REAL WORK THAT HAS TO BE DONE.

IT'S NOT GOING TO BE QUICK.

IT'S GOING TAKE 15 MONTHS.

IT'S A DISASTER FOR MOMS TAKING THEIR KIDS TO SCHOOL, FOR COMMUTERS TRYING TO GET TO WORK.

I DON'T KNOW IF THEY'RE CONCERNED ABOUT FAMILIES.

THE BUSINESSES IN THIS COMMUNITY, THE RESIDENTS OF THIS COMMUNITY ARE ALL HANG MANAGE THE BALANCE.

SHUT DOWN THE SHUTDOWN!

HOW DARE YOU DO THIS TO US!

WE ARE PEOPLE!

WE HAVE TO DO THIS WORK.

WE HAVE TO BITE THE BULLET.

IT'S SOMETHING WE HAVE TO DO.

WE DON'T HAVE A CHOICE.

THAT TUNNEL HAS TO CLOSE.

I, ANDREW MARK CUOMO WILL FAITHFULLY DISCHARGE THE DUTIES OF THE OFFICE OF GOVERNOR OF THE GREAT STATE OF NEW YORK, SO HELP ME GOD.

I ASKED A PANEL OF THE BEST EXPERTS WE COULD FIND TO COME LOOK AT THE L TRAIN SITUATION.

LONG STORY SHORT, IT WOULD NOT BE NECESSARY TO CLOSE TUNNEL AT ALL.

THEY CONVINCED US THIS WAS ABSOLUTELY ESSENTIAL.

100 DAYS BEFORE THEY'RE PLANNING TO DO THE WORK, THEY'RE TELLING US NOT ESSENTIAL.

NOW IT'S BECOME A PUBLIC TRUST ISSUE.

THIS IS JUST ANOTHER COMPLETE DISASTER.

EVERYBODY READY?

WE ARE NOT EMPTY SUITS.

THE CURRENT STATE OF DECLINE IS WHOLLY UNACCEPTABLE.

THE L TRAIN IS A PERFECT EXAMPLE.

THE L TRAIN ISSUE GOES TO THE HEART OF ALL THE PROBLEMS.

WE HAVE AGING INFRASTRUCTURE, LACK OF MAINTENANCE, THE RISING SPECTER OF CLIMATE CHANGE AND POLITICAL TENSIONS OVER WHO IS RESPONSIBLE FOR FIXING IT?

WHO IS RESPONSIBLE FOR PAYING FOR IT?

WANT THE PROBLEM SOLVED RIGHT NOW.

THE NEW YORK CITY SUBWAY SYSTEM IS AN ACHIEVEMENT.

BUT IT'S DECLINED AND IT'S A SYMPTOM OF WHERE WE'VE GONE AND WHERE WE ARE AT A SOCIETY.

THE DIRECTOR OF 'END OF THE LINE' JOINS US NOW.

WELCOME BACK TO THE PROGRAM.

THANKS FOR HAVING ME.

AS WE SAW IN THE INTRODUCTION, FOR THREE YEARS WE WERE TOLD THIS IS THE WAY IT HAD TO BE.

THERE WAS NO ALTERNATIVE.

IN FACT, ON DECEMBER OF 2018, GOVERNOR CUOMO SAID AFTER A TOUR OF THE TUNNEL, YEAH, WE'RE GOING TO HAVE TO CLOSE IT DOWN FOR 15 MONTHS.

A FEW WEEKS LATER, HE CAME UP WITH THAT ANNOUNCEMENT, NO, WE DON'T NEED TO DO IT.

WHAT THE HECK HAPPENED?

SO WHAT HE SAID HAPPENED IS THAT THESE ACADEMIC EXPERTS THAT HE HAD BROUGHT INTO THE TUNNEL THAT NIGHT IN DECEMBER MUST HAVE COME BACK TO HIM AND SAID ACTUALLY, YOU KNOW WHAT?

THIS ORIGINAL PLAN ISN'T ENTIRELY NECESSARY.

WELL CAN SKIRT THIS GREAT DISASTER OF SHUTTING IT DOWN FOR 15 MONTHS BY JUST HANGING THE CABLES ON THE WALL AND GOING ABOUT OUR BUSINESS.

PROBABLY NO ONE SPOKE TO MORE PEOPLE WHO WERE GOING TO BE DIRECTLY AFFECTED.

WHO WERE DIRECTLY AFFECTED BY THE PLANNED SHUTDOWN AND WHO WOULD BE AFTER THE SHUTDOWN THAN YOU WERE.

YOU STARTED MAKING YOUR FILM IN 2016.

THE FIRST ITERATION OF THE FILM WAS ESSENTIALLY ABOUT HOW IT WOULD AFFECT -- THE SHUTDOWN WOULD AFFECT PEOPLE.

HOW DID THAT AFFECT PEOPLE, RESIDENTS, BUSINESS PEOPLE?

AND HOW DID THEY REACT TO THIS TURN OF EVENTS?

SO, I MEAN, I THINK THERE WAS TO SOME DEGREE SOME CELEBRATION THAT THIS TERRIBLE, YOU KNOW, SORT OF DISASTER WASN'T GOING TO BE VISITED ON THE COMMUNITY.

IT COULD HAVE BEEN DEVASTATING.

15 MONTHS, NO TRAIN, EVERYBODY IN NEW YORK UNDERSTAND WHAT'S THE SUBWAY MEANS TO A BODEGA ON THE CORNER RIGHT BY THE STATION WHERE PEOPLE AREN'T GOING TO GO OUT OF THEIR WAY TO GO THERE.

IT'S A CONVENIENCE STORE.

OR A FANCY RESTAURANT IN WILLIAMSBURG THAT DEPENDS ON NOT ONLY CUSTOMERS FROM MANHATTAN, BUT WORKERS FROM MANHATTAN.

BASICALLY YOU HAD SKY-HIGH RENTS HITTING A BRICK WALL OF TRANSIT DEVASTATION IN THE FORM OF THIS TUNNEL SHUTDOWN.

YEAH, THERE WAS SOME HAPPINESS.

THERE WAS ALSO I THINK A CERTAIN DEGREE OF TRAUMA.

WE FOLLOWED ACTIVIST, BUSINESS LEADERS AND POLITICIANS WHO WERE ALSO FIGHTING FOR THOSE YEARS TO MITIGATE THE SITUATION TO COME UP WITH ALTERNATIVES, BUS LANES AND BIKE LANES AND THINGS LIKE THAT.

FOR THEM, THEY HAD JUST BASICALLY WASTED A LOT OF TIME, YOU KNOW.

IF YOU WERE ON THE FRONT LINES OF UNDERSTANDING THE DETAILS OF THIS SITUATION, IT CREATED A CERTAIN SENSE OF DISTRUST THAT THEY HAD COME AND SAID THIS ABSOLUTELY NEEDS TO HAPPEN AND THEN IT DIDN'T.

AND THERE ARE ALSO CONCERNS ABOUT IS THIS A BAND-AID OR IS THIS GOING TO BE A LONG-TERM FIX LIKE THE ORIGINAL PLAN?

AND THAT SORT OF REMAINS TO BE SEEN.

BUT IT ALSO AFFECTED YOU.

FIRST OF ALL, BECAUSE YOU LIVE THERE.

SECONDLY, BECAUSE YOU WERE MAKING THE FILM ABOUT THE SHUTDOWN.

IN FACT, AS I TOLD YOU EARLIER, WHEN I HEARD THE GOVERNOR MAKE HIS ANNOUNCEMENT, YOU WERE THE FIRST PERSON I THOUGHT OF.

BECAUSE WE TALKED IN THE SUMMER OF 2018.

AND I SAID OH MY GOODNESS, WHAT IS EMMETT GOING TO DO WITH THIS FILM.

DID IT EVER CROSS YOUR MIND TO THINK THREE YEARS DOWN THE DRAIN?

YEAH, DEFINITELY.

WHEN THE GOVERNOR INTERFERED, WE WERE IN SHOCK, JUST LIKE THE REST OF THE COMMUNITY.

TO SOME DEGREE, IT LED TO SOME SOUL-SEARCHING.

WHAT HAVE WE BEEN DOING FOR THESE LAST COUPLE OF YEARS?

WE BASICALLY COVERED THIS BIG NOTHING OR THIS BIG SORT OF SNAFU.

AND, YOU KNOW, IT DEFINITELY TOOK US SOME TIME TO CHANGE COURSE.

I DON'T KNOW IF IDENTITY MY WORK TO PUBLIC WORKS PROJECTS IN THE FUTURE.

AND IT SORT OR -- YOU KNOW, A LOT OF PEOPLE WHO QUESTIONED ME ABOUT THE FILM AS I WAS MAKING IT, THEY ASKED WHAT IF THIS DOESN'T HAPPEN?

HAVING COVERED IT FROM DAY TO DAY, I WAS LIKE FIRST OF ALL, IT'S NOT GOING TO NOT HAPPEN.

AND SECOND OF ALL, IF IT DOESN'T HAPPEN, THAT'S GOING TO BE AN EVEN MORE INTERESTING STORY.

AND IT KIND OF DID TURN OUT TO BE ONE.

YOU CHANGED THE FOCUS OF THE FILM.

WHAT'S THE FOCUS?

FIRST OF ALL, HOW MUCH OF THE ORIGINAL FOOTAGE DID YOU HAVE TO DISCARD AND TELL WHAT'S THE FOCUS OF THE FILM IS NOW?

WELL, WE ORIGINALLY SET OUT TO TELL THE STORY OF THE BEFORE AND AFTER OF THE L TRAIN SHUTDOWN, PREPARATION MEETS, YOU KNOW, REALITY.

NOW WE HAVE A THREE-PART STORY, OKAY?

SO IT STARTS WITH THE L TRAIN SHUTDOWN, WHICH IS SORT OF THIS POTENTIAL WORST CASE SCENARIO, LOCAL DISASTER.

AND THEN, YOU KNOW, IT SORT OF SPINS UP INTO THE NEW YORK SUBWAY CRISIS WHICH INFOLDED WITH ALL OF THIS.

2017, GOVERNOR PRO CLAIMS A STATE OF EMERGENCY.

NEW YORK CITY HITS ROCK BOTTOM IN JANUARY 2018 WITH THE LOWEST ON TIME RATE OF ANY MAJOR RAPID TRANSIT SYSTEM WORLDWIDE.

AND FROM THERE WE SAY WELL, LOOK, THE NEW YORK SUBWAY IS BASICALLY AMERICA'S GREATEST TRANSIT INFRASTRUCTURE ASSET AND LOOK AT THE SHAPE IT'S IN.

THIS REALLY CONNECTS TO A NATIONWIDE CRISIS THAT'S UNDERWAY RIGHT NOW WHERE MESH HAS FALLEN BEHIND INTERNATIONAL STANDARDS.

THE METRICS SHOW IT.

THEY HAVE TRAINS IN JAPAN THAT GO 50 MILES AN HOUR FASTER THAN ANYTHING WE HAVE IN AMERICA.

WE DON'T HAVE THE BULLET TRAIN.

IT WAS SUPPOSED TO HAPPEN IN CALIFORNIA.

BASICALLY RAN OUT OF MONEY.

PUBLIC TRANSIT SYSTEMS IN BOSTON AND WASHINGTON ARE STRUGGLING SIMILARLY.

THOSE ARE SOME OF THE BIGGEST ONES IN THE COUNTRY IN NASHVILLE, YOU HAVE BASICALLY AUTO AND FUEL LOBBYISTS WHO JUST WANT TO SEE MORE CARS ON THE ROAD, CAME OUT AND THEY SUPPRESSED PUBLIC TRANSIT PROJECT THAT WAS SUPPOSED TO HAPPEN, AND THEY GOT IT VOTED DOWN.

YOU THINK THAT'S THE -- THOSE LOBBYISTS, THE ROAD AND FUEL LOBBYISTS ARE RESPONSIBLE FOR A LOT OF THIS?

I DON'T KNOW IF THAT'S THE CASE IN NEW YORK, BUT THERE IS DEFINITELY A MOVEMENT NATIONALLY THAT IS INTERESTED IN SUPPRESSING PUBLIC DEVELOPMENT AND MASS TRANSIT, NOT BECAUSE THERE IS SOME ISN'T THAT RIGHTER WAY, BUT JUST BECAUSE THEY MORE CARS ON THE ROAD.

IT'S ALL PART OF A BIG TRANSIT.

WE'RE HERE IN NEW YORK.

EVEN THE TRAILER, JUST THE TRAILER KIND OF DIRECTIOUS TO THAT, MAKES YOU SEE THAT, WHICH IS THE PROBLEM HAS BEEN AS YOU PUT IT IN A PIECE YOU WROTE, AND AS A NEW YORK CITY TIMES KAUSIVE EXPOSE OF THE SUBWAY SYSTEM INDICATED A NUMBER OF FACTORS.

DECADES OF DIVERTED FUNDS, DEFERRED MAINTENANCE, LACK OF ACCOUNTABILITY, EXORBITANT MANAGEMENT AND LABOR COSTS AND INEFFICIENT WORK COSTS TO WHERE WE ARE NOW.

DOES YOUR FILM GO INTO HOW THIS CAN BE TRANSCENDED, HOW THOSE PROBLEMS CAN BE TRANSCENDED?

YEAH, I MEAN, LOOK, OUR JOB AS THE INDEPENDENT MEDIA IS TO SHINE A LIGHT ON THIS, TO BRING THIS TO THE PUBLIC IN A CINEMATIC, EVEN ENTERTAINING FORMAT WHERE THEY CAN REALLY SEE WHAT THE PROBLEM IS AND HOPEFULLY DRAW OUT THEIR SUPPORT, PUSH IN THE NATIONAL DIALOGUE SO THAT THESE THINGS DON'T HAPPEN IN THE DARK, AND WE CAN CREATE THE PUBLIC WILL TO CREATE CHANGE.

WHEN IS YOUR FILM NOW SCHEDULED TO COME OUT?

SO WE ARE PLANNING TO RELEASE IT IN EARLY 2021.

RIGHT NOW WE ARE RUNNING A KICK STARTER CAMPAIGN THAT IS CURRENTLY LIVE.

WE'RE RAISING MONEY BECAUSE, YOU KNOW, FOR THREE YEARS, WE AS INDEPENDENT FILMMAKERS HAVE FUNDED THIS ON OUR OWN DIME.

AND NOW WE'RE LOOKING TO THE PUBLIC TO COME OUT AND SUPPORT US.

ARE YOU CONFIDENT YOU'RE GOING TO BE ABLE TO FINISH THIS FILM WITHOUT ANOTHER U-TURN IN THE FUTURE?

I HOPE SO.

I'M DEFINITELY READY FOR WHATEVER SURPRISES MAY COME.

EMMETT, THANK YOU SO MUCH FOR JOINING US ONCE AGAIN.

FASCINATING FILM.

THANK YOU.

> IMAGINE IF EVERY DAY YOU THOUGHT YOUR LEGS WERE GOING TO FALL OFF FROM THE AMOUNT OF PAIN RUNNING THROUGH THEM.

IMAGINE IF YOU STARTED BLACKING OUT AT VARIOUS POINTS DURING THE DAY.

. THAT WAS ALLY HILFIGER, THE DAUGHTER OF RENOWNED FASHION DESIGNER TOMMY HILFIGER, RE REVEALING THE EXCRUCIATING PAIN SHE SUFFERED FOR YEARS WHILE BATTLING LYME DISEASE.

HER ORDEAL BEGAN AT THE AGE OF 7 WHEN SHE WAS BITTEN BY A TICK.

HER TEST FOR LYME DISEASE WAS INCONCLUSIVE.

SO ALONG WITH THE OFTEN UNBEARABLE PAIN, YEARS OF MISDIAGNOSES FOLLOWED.

AT FIRST SHE WAS THOUGHT TO HAVE NOTHING MORE SERIOUS THAN GROWING PAINS.

THEN AT 11:00 IT WAS RHEUMATOID ARTHRITIS OR MAYBE MULTIPLE SCLEROSIS.

AT 16 IT WAS FINE GROW MYALGIA.

THEN 16 A DESPERATE FATHER CONVINCED IT STEMMED FROM A MARIJUANA HABIT HAD HER ADMITTED TO A HOSPITAL.

HILL FIGURER IS NOW TELLING THE ENTIRE STORY OF HER LONG AND PAINFUL STRUGGLE IN HER NEW BOOK, 'BITE ME: HOW LYME DISEASE STOLE MY CHILDHOOD, MADE ME CRAZY, AND ALMOST KILLED ME.'

ALLY HILFIGER JOINS ME NOW.

ALLY, WELCOME.

THANK YOU SO MUCH FOR JOINING US.

HI.

THANK YOU SO MUCH FOR HAVING ME.

THIS IS A WONDERFUL BOOK.

THANK YOU.

IT'S REALLY RIVETING AND HARROWING, BUT ALSO FUNNY.

THANK YOU.

YOU HAVE A GOOD SENSE OF HUMOR IN BETWEEN ALL THE PAIN.

THANK YOU.

SO WHEN YOUR MOTHER FIRST SAW THAT LITTLE TICK ON YOUR BELLY, WHEN YOU WERE A LITTLE KID, ABOUT 7, SHE DID EVERYTHING SHE WAS SUPPOSED TO DO.

SHE PLUCKED IT OFF WITH STERILIZED TWEEZERS.

SHE PUT IT IN A TEST TUBE, BROUGHT IT FOR TESTING, BUT IT CAME BACK INCONCLUSIVE ON THE NEGATIVE SIDE OF THE SPECTRUM.

HOW COULD THAT BE SINCE YOU DID CONTRACT LYME DISEASE?

HOW COULD THEY HAVE MADE SUCH A MISTAKE?

UNFORTUNATELY, MY STORY IS NO DIFFERENT THAN MANY OTHERS IN THAT MANY PEOPLE'S BLOOD TESTS COME BACK INCONCLUSIVE, OR WITH FALSE NEGATIVES.

SOMETIMES EVEN WITH FALSE POSITIVES.

HOWEVER, MOST OF THE CASES AS FALSE NEGATIVES.

WE'RE IN VERY ARCHAIC TESTING.

STILL?

AFTER ALL THESE YEARS?

YES.

WE'RE TRYING TO FIGURE OUT A BETTER WAY TO DIAGNOSIS AND TEST.

SO GIVE US A SENSE OF HOW YOUR HEALTH BEGAN TO DETROIT, HOW -- WHAT HAPPENED TO YOU MENTALLY AND PHYSICALLY, AND HOW THAT AFFECTED YOUR ENTIRE CHILDHOOD.

RIGHT.

I STARTED OUT WITH PAIN IN MY LEGS AND MY JOINTS AND MY KNEES AND MY MUSCLES, STREP THROAT AND HEADACHES.

AND, YOU KNOW, IT WAS DIFFICULT BECAUSE I THOUGHT THAT MAYBE OTHER PEOPLE HAD THIS PAIN.

AND WHEN I FOUND OUT THAT THEY DIDN'T, I FELT DIFFERENT.

AND WHEN THEY COULDN'T FIGURE OUT WHAT IT WAS, THERE WAS NO SOLUTION, THEN I FELT LIKE I WAS A BABY.

AND THEN I HAD A MAJOR SNOWBOARDING ACCIDENT AT THE AGE OF 13, AND THE LYME DISEASE, OR WHAT WAS HAPPENING TO ME SEEMED TO HAVE BEEN EXACERBATED, AND IT WENT TO MY BRAIN AND I STARTED HAVING FAINTING SPELLS.

I -- A LOT OF COGNITIVE ISSUES.

MY READING SKILLS WENT DOWN THE DRAIN, AND MY MEMORY AND RETENTION SKILLS WENT OUT THE WINDOW.

YOU CARRIED A CAMERA AROUND SO YOU COULD PHOTOGRAPH AND FILM THINGS SO THAT YOU WOULD REMEMBER THEM AS A KID.

YES.

UNBELIEVABLE.

YES.

AND THE WORST PART OF IT, WHAT WAS SO STRIKING AND SAD TO ME, THE WORST PART OF IT WAS NOT EVEN ALL THIS PAIN FOR YOU.

IT WAS PEOPLE DIDN'T KNOW WHAT YOU HAD.

TELL US ABOUT THAT.

WELL, IT'S KIND OF LONELY, BECAUSE YOU FEEL A CERTAIN WAY AND YOU'RE TOLD OH, IT'S THIS OR IT'S THAT, BUT THERE IS NOTHING WE CAN DO ABOUT IT.

YOU'RE PROBABLY GOING TO BE OKAY.

AND WHEN THE SYMPTOMS KEEP GETTING GETTING WORSE.

I DON'T WANT TO SOUND LIKE A COMPLAINER TO MY PARENTS WHO WERE DOING EVERYTHING THEY POSSIBLY COULD, BRINGING ME TO ALL THE DOCTORS.

AND, YOU KNOW, IT'S REALLY SCARY NOT HAVING ANSWERS.

AT ONE POINT, I SHUT MY MOUTH.

I GAVE UP.

YOU PUT UP WITH ALL THE SYMPTOMS.

YOU WERE KIND OF LIKE YOU WERE POISONED EVERY DAY.

YOU WERE SUFFERING FROM POISON, BUT YOU HAD TO PUT UP WITH IT.

I THOUGHT EVERYONE WAS JUST AS TIRED AS I WAS.

IT WAS BEYOND FATIGUE THAT YOU'LL NEVER UNDERSTAND.

AND IT CAME TO A HEAD WHERE THE SYMPTOMS WERE COMPLETELY UNBEARABLE AND UNIGNORABLE.

IT WAS IMPOSSIBLE TO IGNORE THAT THERE WAS SOMETHING SERIOUSLY WRONG.

NOW, IT GOT TO A POINT, AS I SAID IN THE INTRODUCTION, WHERE THE THINGS THAT YOU SAID WERE SO ODD, AND SOME OF THE THINGS THAT YOU DID WERE SO BIZARRE THAT YOUR FATHER, AS I SAID, ASSUMED THAT YOU HAD A MARIJUANA HABIT, BECAUSE IN FACT HE WENT TO YOU ONE TIME AND SAID WHAT CAN I DO FOR YOU?

YOU SAID THE ONLY THING YOU CAN DO FOR ME IS GET ME MORE POT.

WHY WAS THAT, BY THE WAY?

THE MARIJUANA HELPED THE NAUSEA, THE CHRONIC DEBILITATING NAUSEA AND JOINT PAIN.

AND I WAS TIRED ALREADY.

SO IT DIDN'T MAKE A DIFFERENCE.

AND, YOU KNOW, IT GOT ME THROUGH SOME REALLY PAINFUL TIMES.

PHYSICALLY.

HE DECIDED THAT THE ONLY THING HE COULD DO WAS COMMIT YOU TO THE PSYCHIATRIC HOSPITAL?

PHYSICALLY HE DID.

TELL US THAN.

ON TOP OF THAT, I WAS SUFFERING FROM A NERVOUS BREAKDOWN AND NOT MAKING SENSE.

I WASN'T ABLE TO PUT SENTENCES TOGETHER.

I WAS BABBLING AND TALKING TO MYSELF.

HAD GONE CRAZY.

PSYCHOTIC.

PSYCHOTIC.

IT WAS PSYCHOTIC.

BUT THAT WAS PART OF THE LYME DISEASE.

CORRECT.

THAT'S CORRECT.

A LOT OF PEOPLE WITH LYME DO HAVE PSYCHOTIC BREAKS AND OFTENTIMES DON'T RETURN FROM THEM.

I AM VERY LUCKY THAT HE PUT ME IN A HOSPITAL, THANK GOD.

STILL YOU THINK ABOUT IT, IT STILL MAKES YOU MAD.

BUT THAT SAVED YOUR LIFE.

IT DID.

EXPLAIN THAT.

WELL, WHEN I WENT INTO THE HOSPITAL, I WAS VERY ANGRY, AND I HAD NO IDEA WHY I WAS THERE.

WAKING UP IN A PSYCHIATRIC WARD IS NOBODY'S DREAM.

IT WAS A NIGHTMARE.

AND AS THE TIME WENT ON, A MET A WONDERFUL DOCTOR THERE, DR.

ELLEN CHANDLER WHO IS BASED OUT OF STANFORD.

AND SHE REALLY LISTENED TO ME AND TOOK ME SERIOUSLY AS A PERSON.

AND ONCE I GOT OUT OF THERE, I SAT IN HER OFFICE AND I TRUSTED HER ENOUGH TO SAY LISTEN, WE'VE GONE TO MANY, MANY DOCTORS AND NOBODY HAS DONE ANYTHING AND THERE IS NOTHING.

I FEEL HORRIBLY.

THESE ARE ALL OF THE SYMPTOMS, AND I'M STILL IN PAIN.

THIS IS WHAT I WAS TRYING TO SAY BEFORE I ENTERED INTO THE HOSPITAL, AND STILL NOBODY HAS DONE ANYTHING ABOUT IT.

AND SHE SAID I REALLY THINK YOU HAVE LYME DISEASE.

AND I SAID OH, NO, NO, I'VE BEEN TESTED FOR THAT.

THEY THINK IT'S FIBROMYALGIA.

I'M SORRY TO TELL YOU, BUT THE TESTS ARE HIGHLY INACCURATE.

I'M GOING SEND YOU TO A FEW MORE DOCTORS.

THE TEST CAME BACK THROUGH THE ROOF LYME DISEASE, AND BY BZ, COINFECTIONS.

AFTER YOU WERE DIAGNOSED YOU GOT THE CORRECT TREATMENT AND YOU WERE GOOD AS NEW, RIGHT?

NOPE.

WHAT HAPPENED?

I WISH.

WHEN I FOUND OUT IT WAS IN FACT LYME DISEASE, LIKE HARD-CORE LYME DISEASE, I FEEL LIKE I WON THE LOTTERY, YES.

AND THEN YOU GO ON YOUR MERRY WAY TO THE PHARMACY AND GET THE ANTIBIOTICS.

AND UNFORTUNATELY, THEY -- LISTEN, THEY DID A LOT OF GOOD.

THEY REALLY DID.

BUT AFTER A LONG COURSE OF ANTIBIOTICS AND FEELING WELL, I WOULD GO BACK TO WORK AND BACK TO LIFE AND RELAPSE AGAIN.

AND THIS WENT ON -- AND I'D HAVE TO GO BACK ON ANTIBIOTICS AND ON AND ON AND ON.

I TRIED EVERY ANTIBIOTIC, EVERY TREATMENT.

MIXED THE COINFECTION, THE COUSIN TO MALARIA, IF YOU WILL, IT REALLY IS A MORE COMPLICATED THING TO DEAL WITH.

AND, YOU KNOW, SO MANY TIMES I WAS ANOTHER ONE?

I CAN'T DO THIS AGAIN.

I CAN'T DO THIS AGAIN.

AND SO WE TURNED TO HOMEOPATHY AND DETOXING WITH DIFFERENT HERBS AND EVERYTHING.

AND WE MOVED TO CALIFORNIA.

AND ULTIMATELY, I THINK THAT MADE IT MORE MANAGEABLE.

REALLY.

SO HOW ARE YOU DOING NOW?

HOW DO YOU FEEL?

MANAGED.

I'M MANAGED TODAY.

I'M ALSO ABLE TO BE HONEST WITH MYSELF.

IF I'M STARTING TO FEEL UNWELL, I HAVE A TOOL BOX, AND I CAN DIVE INTO THAT TOOL BOX AND CALL DIFFERENT THERAPISTS OR HEALERS OR DOCTORS AND DO DIFFERENT MEDITATIONS, GO ON DIFFERENT DIETS, GO AND, YOU KNOW, SEE PEOPLE WHO MAKE ME FEEL BETTER.

GO TO A PLACE THAT MAKES ME FEEL WELL AND SAY LISTEN, I HAVE TO DO A LITTLE BIT LESS, AND I'M AN OBJECTION IN THE CHINESE ZODIAC AND A REAL WORKER, AND I'M ALSO A NEW MOM.

SO MY ENERGY LEVEL CAN BE COMPROMISED SOMETIMES.

AND I HAVE TO BE HONEST ABOUT HOW I FEEL.

AND I HAVE TO BE ABLE TO SAY LISTEN, I NEED TO TAKE A LITTLE BIT OF A BREAK AND TAKE CARE OF MYSELF.

AND THIS LYME DISEASE ONLY GOTTEN WITH A BITE FROM A TICK?

CAN YOU PASS IT ON TO YOUR CHILD, FOR EXAMPLE?

THAT'S NOT PROVEN RIGHT NOW.

THERE ARE RESEARCHERS ARE LOOKING INTO ALL OF THAT.

UNFORTUNATELY, WHEN I BECAME PREGNANT, I HAD A LOT OF DOCTORS TEST ME.

AND THEY SAID I WAS CLEAR OF ACTIVE LYME.

OF COURSE, MY SYSTEM FLARES UP SOMETIMES BECAUSE IT'S BEEN DAMAGED FOR SO MANY YEARS.

THERE IS NO PROOF YET.

THEY'RE LOOKING INTO ALL OF THAT.

MY BABY GIRL IS HEALTHY AS CAN BE AND HEALTHY AND SMART, THANK GOODNESS.

MAYBE OTHER INSECTS COULD PASS IT ON, I'M THINKING, I THINK.

THE THING THAT SURPRISED ME, ONE OF THE REASONS YOU WERE MISDIAGNOSED FOR 11 YEARS, AND I WAS SURPRISED TO READ THIS IN THE BOOK, IS BECAUSE DOCTORS HAVE A BIAS AGAINST DIAGNOSING FOR LYME DISEASE.

AND IN FACT, THERE ARE SOME DOCTORS STILL WHO DON'T BELIEVE LYME DISEASE EXISTS.

SHOW THAT POSSIBLE?

YOU KNOW, I REALLY DON'T KNOW.

MAYBE THE ONLY EXPLANATION I CAN COME UP WITH IS THAT IT'S SO COMPLICATED AND SO DIFFICULT TO PINPOINT AND TO UNDERSTAND THAT THEY DON'T UNDERSTAND IT YET.

AND WHEN YOU DON'T UNDERSTAND SOMETHING, YOU DON'T WANT TO GET INVOLVED, YOU DON'T GET BLAMED.

SO THAT COULD BE IT.

IT'S BEYOND ME.

AND SO SADDENING AND FRUSTRATING TO KNOW THERE ARE PEOPLE SO SICK AND THE DOCTOR IS NOPE.

HOPEFULLY SOME OF THE DOCTORS WILL BE READING YOUR BOOK.

HOW COMMON IS LYME DISEASE?

OH MY GOODNESS, IT IS SPREADING AT A RAPID PACE.

IT'S A GROWING EPIDEMIC IN OUR COUNTRY.

IT IS ABOVE PROBABLY WHAT THE CDC SAYS.

AND IT'S HUNDREDS OF THOUSANDS OF AMERICANS IN 50 STATES IN 80 COUNTRIES.

SO WHAT DO YOU SAY TO SOMEBODY WHO IS SUFFERING FROM THE SAME KIND OF DESPAIR AND THE PAIN THAT YOU WERE SUFFERING FROM JUST A FEW YEARS AGO, AND MAYBE LISTENING TO US NOW?

I WOULD SAY KEEP A GLIMMER OF LIGHT AND HOPE AT THE END OF THE TUNNEL, WHATEVER THAT GOAL MIGHT BE.

MAYBE IT'S TO WRITE YOUR STORY DOWN.

MAYBE IT'S TO BE ALIVE FOR YOUR GRANDCHILDREN.

AND TO KEEP YOUR EYE ON THAT, AND TO WATCH A LOT OF FUNNY MOVIES IN BETWEEN.

BECAUSE YOU HAVE TO HAVE A SENSE OF HUMOR AND LIFT YOUR SPIRIT.

AND THIS BOOK IS NOT ONLY FOR PEOPLE WITH LYME DISEASE.

THIS IS FOR AWARENESS, IT'S GREAT AWARENESS.

BUT MY STORY OFFERS A LOT OF HOPE WITH ANYTHING THAT ONE MIGHT BE GOING THROUGH AND TO KEEP YOUR EYE ON THAT LIGHT.

MY FATHER TAUGHT ME THIS.

KEEP YOUR EYE ON THAT GOAL, NO MATTER HOW DARK THAT TUNNEL BECOMES AND KEEP YOUR EYE ON THAT LIGHT.

AND WHAT DO YOU SAY?

SUMMER IS ALMOST UPON US.

PEOPLE ARE GOING TO BE GOING OUT TO THE GREAT OUTDOORS, MANY OF THEM TO WHERE TICKS PREDOMINATE OR TICKS CARRYING LYME DISEASE PREDOMINATE.

YOU SAY IT'S MORE COMMON.

IT'S IN CENTRAL PARK.

IT'S KENTUCKY.

IT'S IN MISSOURI.

IT'S EVERYWHERE.

SHOULD WHAT SHOULD PEOPLE DO?

SPRAY YOURSELF DOWN WITH TICK SPRAY.

TICK SPRAY, TICK SPRAY.

WEAR LIGHT CLOTHING.

TUCK YOUR PANTS INTO YOUR SOCKS.

YOU'RE GOING TO LOOK LIKE A DORK, BUT WHO CARES.

AND SPRAY YOURSELF DOWN AND CHECK FOR TICKS.

CHECK FOR TICKS.

THAT'S HOW MY MOTHER FOUND MY TICK.

SO 'BITE ME: HOW LYME DISEASE STOLE MY CHILDHOOD, MADE ME CRAZY, AND ALMOST KILLED ME,' WHAT DO YOU HOPE TO ACCOMPLISH WITH THIS BOOK?

AWARENESS AND MORE RESEARCH, MORE EDUCATION.

AND ULTIMATELY, TO FIND A MORE ACCURATE WAY TO TEST FOR THE DISEASE SO THAT PEOPLE, MY DAUGHTER AND HER GENERATION NEVER HAVE TO GET BIT BY A TICK AND GO THROUGH WHAT I WENT THROUGH.

WELL, IT'S A HARROWING BOOK, BUT IT'S HARD TO PUT DOWN.

IT'S REALLY -- IT'S REALLY WELL DONE.

AND THANK YOU SO MUCH FOR WRITING IT AND THANK YOU SO MUCH FOR BEING HERE WITH US.

THANK YOU FOR HAVING ME.

FOR MORE INFORMATION GO TO OUR WEBSITE AT 'METROFOCUS' DOG.

'METROFOCUS' IS MADE POSSIBLE BY JAMES AND MERRYL TISCH, SUE AND EDGAR WACHENHEIM III, THE SYLVIA A. AND SIMON B. POYTA PROGRAMING ENDOWMENT TO FIGHT ANTI-SEMITISM.

BERNARD AND IRENE SCHWARTZ, ROSALIND P. WALTER, BARBARA HOPE ZUCKERBERG, AND BY --

Funders

MetroFocus is made possible by James and Merryl Tisch, Sue and Edgar Wachenheim III, the Sylvia A. and Simon B. Poyta Programming Endowment to Fight Anti-Semitism, Bernard and Irene Schwartz, Rosalind P. Walter, Barbara Hope Zuckerberg, Jody and John Arnhold, the Cheryl and Philip Milstein Family, Janet Prindle Seidler, Judy and Josh Weston and the Dr. Robert C. and Tina Sohn Foundation.

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