At a tough branch library in Philadelphia -- there were more guards than librarians -- a teenage boy I thought had slept through my speech stood up and asked, ''Do you use drugs when you write?''
He seemed disappointed when I just said no, but not as disappointed as I was at giving the same answer to the next question, from a girl who had seemed entranced by my every word. She asked, ''Are you rich enough now to stop writing?''
Sometimes I think that questions from teenage readers are the real payoff in writing books marketed as ''young adult literature.'' There is a reader-writer connection in this category that simply does not exist in sports journalism, movies, television news and documentaries, and novels for older adults, genres in which I've been called a genius and a jerk because I stroked or ruffled someone's feathers. Readers in middle school and high school have taken me to task for things that have happened to my characters -- their characters, they think -- but always in the context of the work itself. Their minds were open to the story and to what they thought I was saying, whether or not they agreed. That's why writing for them is the most satisfying writing I do.
That satisfaction is something all of us who regularly write for teenagers try to keep in mind when people ask us what we plan to do when we grow up. It's touchy. Most of us started out thinking we'd be writing about a King Lear, not a Kid Lear.
I know exactly when I became a writer for young adults. On Nov. 20, 1965, a few minutes after 9 p.m. Las Vegas time, I was sitting at a darkened poolside outside a casino hotel with an old boxing manager I had taken to dinner. He was reminiscing about his glory days when he owned a gym on East 14th Street in Manhattan. Late at night, he said, he would sit at the top of three dark, twisting flights of stairs. He would be waiting for that special kid to climb up, alone, fighting his fear of the unknown because his life on the streets below was so desperate.
A kid who used his fear as fuel, the old manager said, would have a chance to become a contender. Becoming the champion, he said, is often the luck of the draw, but being a contender, a somebody with promise, is about hard work and character.
The picture of those stairs stayed with me all through the fight I had been sent to cover -- Muhammad Ali beat Floyd Patterson -- and all the way home. I became inflamed with the picture, and wondered: What kind of kid would dare to come up those steps? What would be going on in his life? What would he find at the top?
I wondered what I needed to do to become a contender; what were my narrow twisting stairs? I was a boxing writer for this paper; I had worked on a nonfiction book, helping Dick Gregory write his autobiography, ''Nigger''; and I had sold some short stories, but I had never written a novel. Would the chapters of a novel be my steps up to becoming a contender?
When I got back to New York, there was a letter from one Ferdinand Monjo at Harper & Row. He wondered if I had ever thought of writing a book with boxing as its milieu -- a common boxing term, milieu. I called Mr. Monjo right up and began babbling about a book titled ''The Contender.'' There would be three flights of stairs in it. Mr. Monjo said, ''Go right ahead, dear boy,'' and in my innocence, thank goodness, I thought that was a contract.
Ferdinand Monjo was a terrific editor, and he was surrounded by terrific editors: Charlotte Zolotow, a well-known children's book author who became my editor later, and Ursula Nordstrom, their boss, who just about invented the young adult genre. I knew nothing about children's books then; I was just writing my novel, with boxing as its milieu. But because it was linear, had a 17-year-old protagonist and no sex, it was right for that new genre. And for the times.
Government money was available, there was a need for books with minority protagonists, and perhaps most important there was a generation of librarians and teachers open to stories that were closer to the bone of contemporary teenagers' real lives.
The letters have never stopped coming, more than you would think from white Iowa farm girls who said they identified with Alfred Brooks, a black high school dropout. In my school and library visits, young black men, once they got past their mixed feelings about my whiteness, wanted to talk about what I should write next. They had definite ideas about what should happen to some of the characters. Alfred's best friend, James, whom they all liked, would certainly die before the next book, they said; he was a junkie, they knew him well, he didn't stand a chance.
But it didn't matter because I had no intention of writing any more novels for teenagers. It was King Lear time. Even though ''The Contender'' did well enough to buy a suburban house and help send my two children to college, that genre flourished without me. Stars such as M. E. Kerr, Paul Zindel, S. E. Hinton, Richard Peck, Robert Cormier and Walter Dean Myers brought to the genre a grittier and even a more literary sensibility than existed in mainstream fiction. (Young adult fiction keeps getting better. I was amazed five years ago, as a National Book Award judge, at how hard it was to choose one winner from so much good, smart writing.)
Ten years after my first novel, while writing an essay for Mother Jones magazine about books that had influenced me, the phrase ''in the prison of my fat'' fell out of the typewriter. I had never before consciously thought about how trapped I had felt as an overweight kid, hating my body and finding comfort in reading and writing. In my earliest fiction, thin people died horribly.
That night I started writing my second novel for teenagers, ''One Fat Summer,'' an emotionally true story of my 14th summer during which I lost perhaps 40 pounds. (I don't know exactly because I always jumped off the scale as it rolled up toward 200.)
That 1977 novel started a flood of letters, the best from very tall girls who identified with the fat boy. During my school visits, chubby apprentice writers, once they got past their mixed feelings that I had kept most of the weight off, asked me to recount particularly horrible ways to kill thin classmates, who themselves were listening with what seemed to be horrified interest and new empathy.
In 1997 ''One Fat Summer'' was briefly banned at a school in Levittown, N.Y., because of a passage dealing with masturbation that I don't remember writing. Censorship became a source of pride because it connected me to Francesca Lia Block, the most exciting writer of young adult fiction to emerge in recent years, and to my hero in the field, Judy Blume, who may simply be the most influential writer of our time. She has made a positive difference in thousands of young people's lives.
This, of course, is the secret allure of writing for teenagers. There is a messianic streak to what we do; at the very least we think we are teachers as much as we are artists. If you do this long enough, people who claim we made a difference in their lives write or call to say they have given copies of our books to their children.
Because school sales are often critical to our books' success, we tend to meet our readers more often than many other writers do. As we age (and as our own children age), meeting teenagers and sometimes spending time alone talking with them becomes an important part of staying in touch with our readers and characters. What that also does is spawn sequels. When kids begin talking about characters you created 30 years ago as if they were friends, the need to revisit them becomes overwhelming. Nostalgia has created more sequels than marketing. This year I've been going to schools to talk about ''Warrior Angel,'' the fourth in a series that began with that first book, ''The Contender.'' Of my nine novels for teenagers, that latest one was the toughest to write.
It was a high school student's question that made me understand why. She stood up after I spoke, a little grin on her face, and asked me if winning the American Library Association's Margaret A. Edwards Award for lifetime achievement in young adult literature in 2001 had put pressure on me to write better. This time I just said yes.
I thanked her for asking. Only a teenager would ask a question like that, a real question that acknowledged me as a real person trying to make some sense out of real lives. What I didn't say was that maybe this book would make me rich enough to stop writing. Or to afford the drugs to keep me writing forever.
I
I FEEL OVERWHELMED THIS MORNING BY THE RESPONSIBILITY OF REPRESENTING THE PATIENT, AN INCREDIBLY DIVERSE GROUP DEMOGRAPHICALLY, ALSO DIVIDED BY PAIN, PROGNOSIS AND HEALTH INSURANCE. PLUS I BELIEVE THAT THE CAREGIVER IS A NEEDIER CONSTITUENCY. I KNOW WE’LL GET TO THEM LATER.
BUT I DO HAVE PATIENT CRED. I KNOW WHAT IT FEELS LIKE TO SIT NAKED ON TISSUE PAPER, MOUTH DRY, HEART FLOPPING, CLAWING AT THE PLASTIC HIDE OF THE EXAMINING TABLE. IT IS NOT A POSITION OF POWER. AFTER ABOUT 15 MINUTES, WHEN THE PAPER IS ADHERING, SHIFTING WITH ME, MY IMAGINATION STARTS METASTASIZING; EVERY SYRINGE, CATHETER AND SCALPEL IN THE CABINET – I ALWAYS PEEK - HAS MY NAME ON IT.
I WANT TO TALK TODAY ABOUT MY IMAGINATION, FRIGHTENING BUT ALSO EMPOWERING FOR PATIENT. I’VE ALWAYS HAD A RICH FANTASY LIFE – I’M A WRITER – BUT IN THE PAST 30 YEARS, SINCE I FIRST BECAME A MAJOR LEAGUE PATIENT – BY THAT I MEAN SOMEONE WITH A REALLY SCARY-SOUNDING DISEASE TREATED REGULARLY AT A TEACHING HOSPITAL, THE KIND OF DISEASE THAT MAKES PEOPLE SAY, “HOW ARE YOU?” – THAT’S KEY: “HOW ARE YOU?” IS A KIND OF HELLO OR WASSUP? AND “HOW ARE YOU?” CAN LEAD TO BEING NAKED NOT ON TISSUE PAPER, BUT “HOW ARE YOU?” MEANS YOU’RE STILL ALIVE? BY THE TIME I GOT TO THAT “HOW ARE YOU?” STAGE, MY FANTASY LIFE HAD LEAD ME TO THE THREE MAJOR FANTASIES OF MY PATIENTHOOD.
FANTASY NUMBER ONE – I WILL SEDUCE MY DOCTOR.
FANTASY NUMBER TWO – I WILL CALL A STAFF MEETING OF ALL MY DOCTORS.
FANTASY NUMBER THREE – I WILL FORM A PATIENTS UNION.
FANTASY NUMBER ONE, THE SEDUCTION FANTASY: I DON’T MEAN THIS IN ANY SEXUAL WAY - IF YOU CAN HAVE SEXUAL DAYDREAMS YOU AREN’T AS SICK AS YOU SHOULD BE FOR THE PURPOSES OF OUR DISCUSSION. SEDUCING YOUR DOCTOR MEANS LIFTING YOURSELF OUT OF YOUR CHART, PAST YOUR DIAGNOSIS AND INTO THEIR MENTAL FACEBOOK - SOMEHOW MAKING THEM REALIZE THAT YOU ARE A HUMAN BEING, TOO. GETTING THEM INTERESTED IN YOU. PERHAPS REMINDING THEM OF SOMEONE IN THEIR FAMILY – HOPEFULLY SOMEONE THEY LIKE SINCE YOU WANT THEM VESTED IN YOUR BEING WELL OR AT LEAST IN GETTING BETTER.
THERE ARE VARIOUS TECHNIQUES – INTIMIDATION DOESN’T ALWAYS WORK, ALTHOUGH I TEND TO DRESS UP A BIT FOR IMPORTANT MEDICAL VISITS, SOMETIMES EVEN A TIE, TO GIVE THE IMPRESSION THAT I AM EITHER A LAWYER OR WENT TO SCHOOL WITH A FEW.
SEDUCTION ALSO INCLUDES A LOT OF WHAT MIGHT GENEROUSLY BE CALLED “FINESSING.” IN OTHER TIMES AND PLACES IT HAS BEEN CALLED “FLIRTING” OR “TOMMING.” WE COULD ALSO CALL IT “CAJOLING”…WHETHER IT’S SYMPATHIZING WITH HOW HARD YOUR POOR DOCTOR WORKS, COMMISERATING WITH THE X-RAY TECH WHO WAS LATE FOR YOUR APPOINTMENT BECAUSE HE HAD TO WAIT FOREVER ON A STARBUCKS LINE, OR GENTLY SLOWING DOWN THE JITTERY PHLEBOTOMIST WHOM YOU CAN TELL IS GOING TO JAB THREE TIME BEFORE SHE SPIKES YOUR VEIN.
WHEN MY LATE WIFE WAS IN HER FINAL ILLNESS AT MEMORIAL SLOAN-KETTERING, THERE WAS A TENDENCY FOR DOCTORS AND NURSES TO AVOID HER ROOM OR LEAVE QUICKLY – ULTIMATELY WE UNDERSTOOD THERE WASN’T MUCH THEY COULD DO TO KEEP HER ALIVE, BUT PLENTY THEY COULD DO TO ALLEVIATE HER PAIN – IF THEY COULD BE MADE TO FEEL IT. MY DAUGHTER CAME UP WITH THE IDEA OF DECORATING THE ROOM WITH PHOTOS OF MARGIE AS A YOUNGER, HEALTHY WOMAN. IT NOT ONLY LIGHTENED THE MOOD, BUT IT SEDUCED THE DOCTORS AND NURSES. THEY LINGERED TO LOOK AT THE PICTURES, WHICH WERE NOW DISTANT LIKENESSES OF THE PATIENT IN THE BED, BUT THEY MADE HER INTO A HUMAN BEING. SHE GOT MORE ATTENTION AND MORE REGULAR PAIN MEDICATION.
WHEN MY FATHER BECAME BRIEFLY ILL FOR THE FIRST TIME, I TRIED TO GIVE HIM SEDUCTION TIPS BUT HE WAVED THEM AWAY. HE HATED DOCTORS, NEVER WENT FOR CHECKUPS. HE WAS SITTING NAKED ON TISSUE PAPER WHEN A FIFTY-ISH DOCTOR SWEPT IN, EXPRESSED ANGER THAT THIS MAN HAD NO MEDICAL RECORD AND SAID, “WHEN WAS YOUR LAST EXAM?”
COOLLY, MY DAD SAID, “BEFORE YOU WERE BORN.”
“I DOUBT THAT,” SNORTED THE DOCTOR.
“IT WAS BEFORE MY LAST PROMOTION TO DIRECTOR OF FIFTY SCHOOLS AT THE NEW YORK CITY BOARD OF EDUCATION,” SAID DAD. “THAT WOULD BE 1959.”
“I WAS TWELVE,” SAID THE DOCTOR, CLEARLY INTERESTED NOW. “HOW OLD ARE YOU?”
“GUESS.”
“SEVENTY-FOUR.”
“YOU ARE A GRACIOUS GENTLEMAN,” SAID MY FATHER. “I AM 90.”
AND I WAS FLABBERGASTED. WHAT MOVES THE OLD MAN HAD. THE DOCTOR DIDN’T WANT TO LET HIM GO. TOOK A FULL HISTORY. HE HAD BEEN SEDUCED. LUCKILY, THERE WASN’T ANYTHING THE DOCTOR COULD DO SO DAD LIVED ANOTHER TEN YEARS. HE DIED THREE MONTHS SHORT OF HIS 101ST BIRTHDAY, A SHREWD SURVIVALIST TO THE VERY END.
FANTASY NUMBER TWO: I WILL CALL A MEETING OF ALL MY DOCTORS, WHICH CURRENTLY INCLUDES A PRIMARY CARE PHYSICIAN, AN OPHTHALMOLOGIST, UROLOGIST, ONCOLOGIST, GASTROENTEROLOGIST, CARDIOLOGIST, NEUROSURGEON, DENTIST, DERMATOLOGIST, AUDIOLOGIST, OSTEOPATH AND PODIATRIST, ALL OF WHOM I HAVE SEEN RECENTLY, BUT NEVER AS A GROUP. WHEN I’VE GOT THEM TOGETHER, I WILL ASK THE THREE KEY QUESTIONS OF THIS NATION’S – AS WELL AS MY OWN -- HEALTH CARE CRISIS, QUESTIONS AS CRITICAL TO ASK DOCTORS AS POLITICIANS: WILL YOU GET PAST YOUR PARTISANSHIP TO TALK TO EACH OTHER, WILL YOU FEEL MY PAIN AND ARE YOUR HANDS CLEAN?
WILL YOU GET PAST YOUR PARTISANSHIP TO TALK TO EACH OTHER?
DESPITE WHAT WE SEE ON “HOUSE,” “ER,” AND “GREY’S ANATOMY,” WHERE TV DOCS TALK ENDLESSLY ABOUT THEIR PATIENTS (OFTEN WHILE VERY, VERY CLOSE TO EACH OTHER) REAL DOCS MOSTLY TALK ABOUT BILLING PROCEDURES. IT’S SOMETHING THEY HAVE IN COMMON. MEDICALLY, THEY ARE SEPARATED BY THEIR SPECIALTIES. MY OPHTHALMOLOGIST, GASTROENTEROLOGIST, UROLOGIST AND PODIATRIST MIGHT AS WELL BE EXPLORING DIFFERENT PLANETS. WHILE EACH IS PREPARED TO TAKE HEROIC MEASURES TO SAVE A SPECIFIC BODY PART, IT’S HARD TO GET THEM TO TREAT ME AS A COMPLETE SYSTEM.
I’M SINCERELY GRATEFUL TO THE ONCOLOGIST FOR COMING UP WITH A CHEMO COCKTAIL THAT KNOCKED BACK MY RECENT SECOND RECURRENCE OF THAT THIRTY-YEAR-OLD CANCER, BUT I WONDER IF HE HAD KNOWN ME BETTER, THAT I WAS A MUSIC LOVER, IF HE WOULD HAVE PRESCRIBED THE DRUG THAT HAS DAMAGED MY HEARING.
MAYBE UNDER THE PRESENT HEALTH CARE SYSTEM DOCTORS DON’T HAVE THE TIME OR THE FINANCIAL INCENTIVE TO TALK TO EACH OTHER MORE ABOUT THEIR PATIENTS. MAYBE THEY CHOSE SPECIALTIES SO THEY COULD BE IN EXCLUSIVE CLUBS AND NOT HAVE TO TALK TO OUTSIDERS. MAYBE WE HAVE TO FIND WAYS TO GET THEM TO MEET AND MINGLE. I’LL VOTE FOR THE CANDIDATE WHO NAILS THAT INTO A PLATFORM.
WILL YOU FEEL MY PAIN?
THIRTY YEARS AGO, BEFORE AN OPERATION, A SURGEON TOLD ME THAT I WOULDN’T FEEL A THING. I ASKED HIM IF HE HAD EVER GONE UNDER THE KNIFE? HE STORMED OUT OF MY ROOM. MOST DOCTORS STILL DON’T REALLY KNOW WHAT WE GO THROUGH ALTHOUGH THERE SEEMS TO BE A MOVEMENT TOWARD GREATER UNDERSTANDING. WHEN DOCTORS DO GET SICK THEY TEND TO HAVE REVELATIONS AND WRITE BOOKS ABOUT IT.
I THINK DOCTORS SHOULD BE MADE AT LEAST A LITTLE SICK TO QUALIFY FOR THEIR LICENSES, AND SURGEONS SHOULD HAVE TO UNDERGO AT LEAST A MINOR OPERATION.
ARE YOUR HANDS CLEAN?
THERE ARE CROOKED DOCTORS, LIKE CROOKED POLITICIANS, BUT THIS QUESTION IS A LITERAL ONE. I THINK THE TOUGHEST QUESTION TO ASK A HEALTH CARE PROVIDER ABOUT TO TOUCH YOUR BODY IS, “DID YOU WASH YOUR HANDS?” AT ONE OF MY FAVORITE HANG-OUTS, THE MEMORIAL SLOAN-KETTERING CANCER CENTER, THERE ARE SANITIZING DISPENSERS EVERYWHERE AND STAFF MEMBERS SOMETIMES WEAR BLUE BUTTONS WITH A GERM IN A TARGET AND THE SIMPLE ORDER “WASH HANDS.”
IT’S WELL-KNOWN THAT THOUSANDS OF AMERICANS GET SICK EVERY YEAR FROM DISEASES CONTRACTED IN HOSPITALS. BUT MOST PATIENTS DON’T ASK THE TOUGH QUESTION BECAUSE THEY ARE NOT COMFORTABLE ENOUGH WITH THEIR DOCTORS OR THE MEDICAL ENVIRONMENT TO ASK IT IN A FRIENDLY, NON-CHALLENGING WAY AND THEY ARE AFRAID OF CAUSING ANTAGONISM.
WE NEED TO BE MADE EQUAL PARTNERS IN THE SYSTEM, SO WE CAN TALK FREELY. WE NEED TO BE CALM AND ASSERTIVE AS PATIENTS, AND THAT’S VERY HARD WHEN YOU FEEL SCARED, RUSHED, POWERLESS.
FOR ALL THE POLICY WONK DISCUSSIONS ABOUT MANDATED CARE FOR ALL // VERSUS AFFORDABLE CARE, SINGLE PAYER GOVERNMENT SYSTEMS LIKE MEDICARE VERSUS PRIVATE POLICIES, THE HEART OF HEALTH CARE REFORM IS ABOUT THE DOCTOR AND THE PATIENT FINDING THEIR WAY TOGETHER TOWARD COMPASSIONATE CARE. ACTUALLY, JUST THINKING ABOUT ALL OF THIS GIVES ME STRESS. I AM GOING TO ADD A PSYCHIATRIST TO MY PERSONAL MEDICAL STAFF MEETING.
FANTASY NUMBER THREE: I WILL FORM A PATIENTS UNION
AS YOU RECALL, WE LEFT ME NAKED ON TISSUE PAPER. WELL, FINALLY, A FULLY-DRESSED HUMAN BEING IN A WHITE COAT MARCHES INTO THE ROOM, WEARY AND IMPATIENT, AND, WHILE READING FROM A FOLDER THAT I HOPE HAS MY NAME ON IT, DEMANDS, ''SO. WHAT SEEMS TO BE THE TROUBLE?''
IF THIS WERE A TRUE STORY, I WOULD MUMBLE, ''I'M REALLY SORRY TO BOTHER YOU, DOCTOR, BUT. . . .''
THIS IS A FANTASY. I SMILE CONFIDENTLY AS I GESTURE AT A PERSON SITTING QUIETLY IN A CORNER AND SAY: ''THIS IS MY PATIENTS UNION REPRESENTATIVE, DOCTOR. YOU DON'T MIND IF WE VIDEOTAPE THE SESSION?''
IN 30 YEARS OF SERIOUS TRAVEL IN WHAT I CALL MALADY, THE COUNTRY OF ILLNESS, AS PATIENT AND CAREGIVER, I HAVE COME TO BE CERTAIN ONLY OF THIS: YOU MUST NEVER CROSS THE BORDER INTO THAT COUNTRY BY YOURSELF. AT BEST, YOUR TRAVELING COMPANION SHOULD HAVE ADVANCED DEGREES IN ACCOUNTING, DIPLOMACY, LAW, MEDICINE AND COMEDY. THAT IS A FANTASY EVEN I DON'T ENTERTAIN.
TOO OFTEN WE MAKE THE JOURNEY ALONE, SICK AND SCARED, VULNERABLE TO BULLYING BILLING CLERKS, SNIDE RECEPTIONISTS, OVERWORKED TECHNICIANS AND NURSES AND DOCTORS WHO CAN RARELY TAKE THE TIME TO LISTEN TO A HISTORY THAT CAN INSURE A FUTURE.
SO. LET ME INTRODUCE THE PATIENTS UNION. AT ITS MOST PERSONAL LEVEL, YOUR PATIENTS UNION LOCAL WOULD SUPPLY A SIDEKICK, A SEASONED TRAVELER IN MALADY, TO BE A SECOND PAIR OF EYES AND EARS AT A DOCTOR'S APPOINTMENT AND AT A MEETING WITH YOUR HEALTH INSURANCE COMPANY OR WITH THE HOSPITAL'S FINANCIAL DEPARTMENT. MEANWHILE, THE NATIONAL ORGANIZATION WOULD BE PICKETING GOVERNMENT AGENCIES, H.M.O.'S AND DRUG COMPANIES THAT AREN'T ACTING IN YOUR BEST INTERESTS.
WHEN I SAY ALL THIS, AND IT HAS MOSTLY BEEN SAID AT PARTIES AFTER THE MEDICINAL RED WINE, THE DOCTORS AT THE TABLE SMILE TIGHTLY OR ROLL THEIR EYES OR, IF THEY UNDERSTAND THAT I AM NOT KIDDING, SHIFT UNCOMFORTABLY AS IF ON TISSUE PAPER. IT IS HARD FOR THEM TO UNDERSTAND THAT THE PATIENTS UNION DOES NOT NECESSARILY CONSIDER DOCTORS TO BE THE CENTRAL TARGET OF PROTEST AND CHANGE . THAT’S BECAUSE THEY HAVE ALWAYS CHERISHED THEIR CENTRALITY TO MEDICINE. MY COLLEGE ROOM-MATES, BLESS THEM, ARE DOCTORS, AND EVERYTHING HAS ALWAYS BEEN ALL ABOUT THEM. BUT NOW WE ARE ALL CAUGHT IN A TITANIC MEDICAL-CORPORATE COMPLEX.
WE NEED TO SEIZE CONTROL OF THE BRIDGE AND-OR THE LIFEBOATS – BEFORE THIS SHIP SINKS BY BANDING TOGETHER AS BOLDLY AS THE DOCTORS, NURSES, HOSPITALS AND ACCOUNTANTS HAVE. WE ARE THE ONE ELEMENT THAT EVEN THE ULTIMATE G.E.-DISNEY-GOOGLE-AMA-MICROSOFT H.M.O. CAN NEVER COMPLETELY CONTROL OR CONTAIN. WE ARE THE ONE ELEMENT THEY CAN NEVER DO WITHOUT – WE ARE THEIR RAW MATERIAL, PRODUCT, CUSTOMER BASE, CONSTITUENCY. WITHOUT SICK PEOPLE, THEY ARE DEAD.
BUT SICK PEOPLE AND THEIR CAREGIVERS HAVE TRADITIONALLY BEEN BALKANIZED NOT ONLY BY AGE, RACE, GENDER, CLASS AND MONEY BUT, MOST CRITICALLY, BY DISEASE.
ALMOST EVERY MAJOR MALADY HAS ITS OWN LABORATORY AND LOBBYIST, NATIONAL SOCIETY, CELEBRITY CHAIR, BOARD OF FAMOUS DOCTORS AND, TOO OFTEN, FINANCING FROM A DRUG COMPANY PROFITING FROM THE DISEASE. EACH MALADY COMPETES WITH OTHER MALADIES FOR GOVERNMENT MONEY, PUBLICITY AND TV MOVIES.
WHILE THE GALLANTRY AND MEDIA SAVVY OF THE AIDS BANDWAGON PLAYED ON, THE BREAST CANCER FORCES LEARNED AND PROSPERED. THEN THE PROSTATE PATIENTS STEPPED UP – LESS SUCCESSFULLY BECAUSE BOYS ARE ALWAYS IN COMPETITION - MY PROSTATE IS BIGGER THAN YOURS. THEN DEPRESSION, SCHIZOPHRENIA, BIPOLAR DISORDERS, AUTISM CAME ON STRONG.
DOES THIS MAKE SENSE? CAN YOU IMAGINE IF THOSE DISEASES JOINED FORCES, IF THEY INCLUDED THE SUFFERERS OF LUPUS, MULTIPLE SCLEROSIS, CROHN'S DISEASE, DIABETES, SICKLE-CELL ANEMIA; IF THEY EMBRACED THE MARATHON CAREGIVERS OF PEOPLE WITH CANAVAN'S DISEASE AND ALZHEIMER'S; IF THEY FOUND ROOM FOR THE QUADS, THE HEP C'S, THE ALMOST INVISIBLE HEROES OF CHARCOT-MARIE-TOOTH, A CHRONIC, INCURABLE NEUROMUSCULAR DISEASE?
IN MY ORGANIZING SPEECH I WOULD SAY: OUR IMPERFECT UNION OF IMPERFECT PEOPLE WILL INCLUDE THE MEASURED BRAND-TESTING OF THE CONSUMERS UNION AND THE MUSCULAR COERCION OF THE OLD TEAMSTERS' UNION UNDER JIMMY HOFFA.
WHILE OUR CONSUMERS UNION SIDE WILL DISTRIBUTE THOSE BEST DOCTOR-BEST HOSPITAL LISTS THAT THE GLOSSY MAGAZINES LOVE SO MUCH, OUR LISTS WILL INCLUDE MORTALITY, HYGIENE, AFFABILITY AND COST CHARTS.
OUR TEAMSTERS' SIDE WILL HOIST THE INFLATABLE UNION RAT OUTSIDE ANY H.M.O. THAT CUTS SERVICES AND RAISES PRICES.
AT PATIENTS UNION MEETINGS, WE WILL KEEP REMINDING ONE ANOTHER THAT AS CUSTOMERS WE HAVE A RIGHT TO DEMAND SERVICE, TO GET INFORMATION AND TO BE PART OF THE DECISION-MAKING PROCESS, WHICH ULTIMATELY INCLUDES WHO GETS ALL THE NEW DRUGS AND PROCEDURES FOR WHICH WE ARE PAYING THROUGH TAXES AND MEDICAL FEES.
AS FOR MEMBERSHIP REQUIREMENTS IN THE PATIENTS UNION, ALL YOU NEED IS A PAST OR FUTURE MEDICAL BILL.
EVERYONE WILL GET PATIENTS UNION T-SHIRTS AND BUMPER STICKERS SAYING: P.U. BECAUSE THE SYSTEM STINKS!
THANK YOU. STAY WELL.
