North Carolina Society for Ethical Culture

It’s nice to greet you on this first Sunday of a New Year, and the first day of the Ethics for Children program. When Chris Kamen and I talked about the content of my address we thought it would be appropriate to schedule this talk for a day when parents of young children might be joining us, some for the first time. They would like to hear something uplifting, upbeat about the joys of parenthood, and the rewards of ethical parenting. Good news is so hard to come by these days. I hope my words this morning will satisfy some of that yearning, but I must also warn you that much of my story is bleak, streaked with misfortune, near death and brushes close to tragedy. Like life itself, parenting is often a roll of the dice, a large measure of chance and pure dumb luck.

My story (to a large degree shared by my husband, Murry, trying to make himself inconspicuous in the back), revolves around our three children, two sons and a daughter. My recounting of our family story is strictly MY version; at least three other versions exist. Murry told his in a short story printed in the Urban Hiker magazine last year. Lowell and Evan have each written a memoir published by a major publisher. (All of these are available for your perusal later on the book table) Each of our sons has been on radio; Fresh Air with Terry Gross, The Peoples" Pharmacy; book signings at McInyre’s, Barnes & Noble, one or the other has been on TV; the Phil Donahue Show, the Joan Rivers Show, Good Morning America, NBC Dateline and many more. Their stories have been made very public in numerous magazine articles and mentioned in books by other authors. So far, only our daughter has chosen to remain silent.

Lowell, our first, was born in 1956, a difficult child. The phrase "slept like a baby" had no relevence for him. He slept fitfully and never more than two hours at a time. He had colic for the first three months of his life and screamed inconsolably. He would dig his fist into his ears, scratch his head until it bled, contort his body in his crib. I was in my early twenties, Murry and I lived in a small town in Conn., far from any family member and with only a few new acquaintances. I knew nothing about caring for a newborn baby. I had married young, came from a small family, never had even held an infant for more than a few minutes before L. was born. I felt totally overwhelmed caring for this baby who, no matter what I did, could not be comforted. We fled back to New York, near my parents, extended family, friends, and familiar places. Two more children, Lillian and Evan, followed within the next four years. All three were sickly with Celiac disease, and Lowell continued to be a very difficult child. (Slow to toilet train. Low frustration level. Hard to comfort.) Murry’s business kept him working in Manhattan long, erratic hours; he was seldom home. I found the stress and rigors of managing home life awful, arduous and unpleasant. When Evan, the youngest, reached the ripe age of two, I went back to college to resume the education I had interrupted when I married. Lillian was not quite four, a happy easy-to-please cherub and Lowell, at five, hyperactive and often unhappy.

I was concerned that he had developed a chronic habit of fiercely blinking his eyes, but the pediatrician assured me that ‘kids do these things. It will go away if you don’t make a fuss over it.’ By the time L reached 8 years old, he had demonstrated that he was bright, quick to learn new things but even minor upsets caused temper tantrums. Although his eye blinking did, sure enough, stop as the doctor assured me it would, it was soon replaced with other, wierder behaviors. He tried reading his books upside down. He was physically awkward, ‘different’ and frequently picked on by the other kids. His hyper-activity continued and he came home from school exhausted. He tormented his sister and brother. I was still taking college courses, working toward my bachelor’s degree, which meant I had a college library accessible to me. I began researching and discovered that Lowell probably had something newly identified called ‘dyslexia’. Not one of his teachers had ever heard of such a thing. I managed to find several books written for educators and got permission to set up a reading shelf in the faculty lounge on ADDHD. The principal, although interested in the new information, nevertheless suggested I was an over-achieving mother too concerned about my oldest child’s getting into Yale or similar Ivy League school. I was told not to expect or prod him to go beyond high school.

During the 60’s the wave of social activism caught both Murry and me in its surge. Neither of us had any previous passion for causes, but the threat of strontium 90 fallout from atomic testing while I was nursing Evan got my attention and resulted in my first political action. Shy and self-conscious, I stood in front of the supermarket, collecting signatures on petitions and joined Women Strike for Peace. Murry went with the Ethical Culture Society of Queens to Washington, DC to join Martin Luther King on the March on Washington.

By this time Lowell’s repertoire of behaviors included trying to kick himself in the butt while walking down the hall in school. Or gyrating his torso on every fourth step. Writing was an unbelievable ordeal. After every third or fourth word he would bang his pencil down on the paper, until the homework assignment was pockmarked and torn to bits. Meanwhile, Lillian and Evan were growing into delightful, well-adjusted youngsters. Lillian did well at school, had friends, excelled in music and art, rode horseback, was a bubbly, happy youngster. Evan was good at athletics, brilliant in classes, a student body leader, and elected class president. Murry and I were making desperate efforts to find out why L behaved so oddly. He was 10 years old and we were two years into making the rounds of education specialists and child psychologists. His actions were now stranger than ever...loud shouts, snuffling noises, mumbling. For the next 14 years we had consultations and testing by medical doctors, guidance counselors, learning specialists, psychologists, psychiatrists, opticians, opthalmalogists, and neurologists. We frequented the offices of specialists with a string of letters after their names and their walls hung majestically with diplomas. The advice fell into two general categories: either we were told to forget it, kids do these things and he’ll outgrow it. Or, more ominously, Murry and I had unresolved psychological problems and urgently needed to be in therapy. Since neither of us are the ‘do nothing and wait’ types, the option of simply waiting for Lowell to ‘outgrow it’ was out of the question. Thus started years of individual, couples and family therapy, during which time L’s symptoms continued unabated. Murry and I did learn some valuable lessons tho. Among them, to accept the differences in parenting styles and not to place blame. Murry and I were very different in how we dealt with L and quarrelling about it did no one any good.

I graduated with honors from Queens College in NY and went to work part-time for a child psychoanalyst who ran a therapeutic nursery school. I had been interested in psychology since I was a young adult, years before I had any children, and was considering becoming a psychiatric social worker. I sat in on the staff case conferences, learning the field of child psychiatry. One of the conferences I attended was a particularly bizarre story about a young boy who barked like a dog and made odd inappropriate movements. After much controversy and discussion, the staff reached a diagnosis. The boy had Gille de la Tourette Syndrome. The psychiatrist and his staff agreed this was a severe neurosis, amenable to Freudian psychotherapy. It was also a ‘given’ that the mother was the major contributor to the child’s unfortunate condition. I had been listening intently and thought I recognized some of the behaviors in the case presentation. Years earlier I had come to think L was emotionally distrubed. But I totally rejected the idea that it could be an incurable illness and one which I had caused. "Moi? Never!"

Here’s L’s description from his book Twitch & Shout: A Touretter’s Tale: "Along with TS I have dyslexia and ADD which often accompany T and made my elementary school edu difficult and frustrating. It wasn’t until a year after I graduated from high school that I finished reading cover to cover my first book. I don’t think even I realized the isolation I experienced in a world without books, where letters inverted themselves or floated off the page, as if in a hallucination. I remember my childhood bedroom in my home where my mother acquiesced to my acting out by playing a game with me that we repeated weekly. She said I could completely demolish the room if I agreed to help clean it up when I was finished.

I see now that this violent means of venting and releasing an overflow of energy was the direct result of my inability to express myself. Later, in high school, I resorted to smashing walls and breaking objects. My inability to understand my condition exploded in these unsubtle and inarticulate ways. Making pictures became my salvation."

Lowell used the money he was given for his 13^th birthday to buy his first camera.

It was the beginning of his life-long fascination with picture making and what led him to his eventual career of photojournalist.

During these child-raising years, the pain and puzzlement of L’s behavior were mitigated by other joys and pleasures. Murry and I were involved in separate, successful careers. Murry’s graphic design studio was handling the accounts of national giants in the pharmaceutical business. I had completed a master’s degree in public health at Columbia U., and took post-graduate studies in family therapy. I worked as a family therapist and advanced to the position of Director of the mental health center of a community hospital. Lillian went off to college, dated, became the resident assistant at her dorm, traveled to Europe, graduated college and became engaged. Evan finished high school having totally bought into what we had offered as kind of ‘patent medicine’ parental encouragement. "You can do anything you want, be anything you aspire to be" we told him. He just wanted to be rich and famous! Deferring college for a year he went to work as an apprentice at an off-Broadway theatre to test whether he wanted to become an actor. Lowell, in spite of earlier teachers’ admonitions, had determined he would go to college and major in photography. In his freshman year he produced a poignant portfolio of pictures depicting youngsters at a summer camp for children with emotional problems. U.S. Camera magazine featured it prominently in an 8-page article. Lowell still did not know what was causing his involuntary movements, loud shouts, and irritability. But he was sometimes refused admission to restaurants, insulted in public places, and of course, turned down at almost every job application. When L was 24, after 16 years of searching and testing, Lowell, Murry and I, sat in a neurologist’s office and were told that without any doubt, he had a ‘moderately severe’ case of TS. For those not familiar with it, TS is a neurological syndrome, marked by a wide range of involuntary motor tics and sounds. It is sometimes accompanied by copralalia, the shouting of curses and obsenities. It is frequently described as ‘devastating’ because it is socially unacceptable, altho the person usually can function quite well. It is chronic, non-curable and non-degenerative. Meaning that it will not get better or worse or ever go away. It can be treated with medication to reduce the symptoms and is genetically transmitted.

The next 4 years passed with our slow, reluctant acceptance of that reality. There was, of course, relief in knowing the name and cause of his malady. But with the relief there was also my guilt… as the possible genetic carrier, at the years of not being more accepting and understanding, of the enforced discipline, and …just guilt. There was also the frightening question of his future. What kind of employment could he find, what sort of training did he need and what would he be able to master? 1984 ended with a very sad coda in the death of my father. I didn’t know yet how sad and terrifying 1985 would be! My mother’s death followed my father’s by just a few weeks. My sister and I sat numbly in front of a hospital TV set, watching the New Year ring in to joyous revelry, while my mother lay dying nearby. Over the next few months I mourned the loss of both parents and buried myself in my work.

Evan had finished his apprenticeship as a gopher at the theatre and decided he was, in fact, determined to be an actor. With an acceptance to The Juilliard School in hand, he studied drama for almost 2 years, then left to accept a major role in the 20^th Century Fox blockbuster movie "Taps". Major parts on Broadway followed. It was a thrill to see Evan written up in a theatre review, or mentioned in a NY Times article. I began collecting my boxfull of Playbills with Evan's name in them. Evan was now 24 years old, on a national tour of Master Harold…and the Boys when his throat started to hurt. He had mentioned it in a phone call or two from Dallas, or Madison, Wi. But I just assumed the taxing demands of 8 shows a week with a great many lines was straining his voice. Back in NY at the tour’s end, Evan was now working in a Neil Simon play on Broadway. He called to say that he’d been to a couple of specialists, and he had another appointment the next day. He thought he might have something serious and asked if we would come into the city to meet him at the doctor’s office. The waiting room was a busy place, and well named. We waited for 5 hours until every patient had gone, a second specialist had reviewed Evan’s tissue slides, and confirmed the first doctor’s reading. Then a grave doctor in a white lab coat escorted us into his office; carefully make sure we were all seated. I’ll read you the opening words from his book, Time on Fire, My Comedy of Terrors.

"I’m afraid it is not good news," is what he said. "It is bad news. It is in the bone marrow. It’s an acute myelogenous leukemia."

Now, for some reason this doctor, in my memory, has turned into Richard Nixon. If Richard Nixon had ever been interested in acting, in the movie, I’d have given him the part. We were in this doctor’s office for some time after that. My parents, my girlfriend Jackie, and me. There was some talk of intensive chemotherapy, remission rates; the phrase"not curable" hit me from somewhere. I only remember that I kept rubbing the side of my face, really hard.

"Okay, okay, okay," I finally said, and everyone seemed a little bit startled, as if they’d forgotten I was actually there in the room with them. "I have to get out of here now. We can talk about all this later," and I got up to go.

"I wouldn’t wait very long," Dr. Nixon said. And we stumbled out of his office and into the street."

And so we entered the world of ‘them’ the sick, the dying, the families of the really, seriously ill. It is an amazing and real boundary that is crossed, when you traverse from ‘us’ — the healthy or those with treatable, curable, minor illnesses to ‘them’, the dying or those who might be rescued by extreme modern medical technology. Dr. Nixon told us that while Evan’s only hope of survival — a 10-

20% chance, at best, would be chemotherapy and possibly radiation, it was "inhumane’ treatment. The next 5 years were devoted to Evan’s initial treatment, his anticipated relapse, his return to Memorial Sloan-Kettering Hospital for more chemotherapy, a frantic search for a bone marrow donor, researching the foremost medical centers and their rates of success/failure with the new transplant protocols. The treatment in 1985 for leukemia was not only inhumane, it was literally torture. (For details, read his book.) There was one year when every single holiday — Mother’s Day, Father’s Day, Fourth of July, Thanksgiving, Christmas and New Year’s, was spent at Evan’s hospital bedside.

After a year of treatment Evan’s leukemia was still in remission. During that time, he and his girlfriend Jackie had become veritable encyclopedias of knowledge about the status of cancer treatment in the US. We had all been clearly informed that altho his chances of remission were almost 50%, that still meant only a 10-20% chance of survival for more than 2 years. In other words, it was highly probable leukemia would return and kill him within a year, at the most, two. My formal education in health statistics took on new meaning.

As soon as he was well enough to travel, Evan went to the Fred Hutchinson Center in Seattle, Wash. and John Hopkins in Ba., visiting the best treatment centers in the US for his type of cancer. I contacted Dana Farber in Boston and Anderson Hosp. in Texas by phone to get information on success rates, Doctors’ names, experimental protocols, and anything else I could learn.

During that year we planned Lillian’s wedding. We threw a splendid, formal party for 125 guests, our incredibly devoted network of family, friends and colleagues. I was escorted down the aisle by Lowell and Evan, one on each side, the three of us beaming with the pleasure of survival and surmounting. After peaks of happiness like that, there were the valleys. I was handling Evan’s medical bills. The trouble was, I couldn’t read them. Literally. My tears rolled uncontrollably onto the page, blurring my vision, steaming my glasses. I experienced the nausea of his chemo when I saw the entry. Each charge — hundreds of them--represented a procedure filled with pain and suffering for my child.

I ended up finding someone with insurance experience who had never met Evan and hired her to open the statements, read the print-outs, file the forms, resubmit unpaid claims, correct errors, send others on to the secondary insurer, and tell me what needed to be paid.

On the second anniversary of his remission, accurate almost to the very week, Evan had the relapse. He was readmitted to Memorial S-K Hospital and began the horrors of treatment all over again. By this time bone marrow transplantation was being used in a few hospitals and Evan knew the questions to ask. "What is your success rate?" he demanded at Memorial Hospital in NYC. "50%" was the reply." And how many patients have you treated?" The chagrined doctor had to answer that there had been only two…one lived, one died. Evan survived the next round of chemotherapy, was in remission again, and ready to face the ordeal of a bone marrow transplant. He selected Johns Hopkins Medical Center. He and Jackie, Murry and I packed for a three-month sojourn and moved to Baltimore. In order to have even a minimal income, which was critical given our expenses, Murry and I traveled to our home offices in Westchester, NY every three or four days, robotically performed what work we could, and traveled back to the hospital. At the end of three months Evan was discharged back to his apt. in NYC in virtual quarantine to protect a brand new, very fragile immune system.

Murry and I left Baltimore and went home to try and piece together our shattered lives.

But Evan’s ordeal was not over. He still needed frequent blood transfusions done as an outpatient. During his transplant and immediately after, Evan was kept alive on tubes sustained by antibiotics and blood transfusions mixed from hundreds of donors. But patients often develop resistance from these mixed blood bags, and then require single donor blood products. My sister and I became virtually his exclusive source. This is how he describes it:

"Bara’s platelets, especially, were like the Dom Perignon of blood products. Whereas a normal transfusion of mixed-donor platelets wouldn’t even cause a blip in my blood counts, Bara ‘s platelets shot the numbers straight up. ….Every third day or so, as often as she was allowed, Bara would troop into New York from her home in NJ to be drained. She showed up in my room afterward with her arms bandaged, sporting a fresh bruise from from the latest needle. When the veins on the inside of her elbows eventually collapsed, Bara offered up her wrists. …she never complained."

I returned to work, frequently seeing clients with both arms bandaged from a recent visit to the ‘blood room’.

Well, so where are the rewards of the title of this talk? What joys was I talking about a half-hour ago? What inspiration is there in this Mom’s Story? For me, as I think it would be for most of you, the real reward of having lived through these incredibly trying years, is to see how each of my children has grasped the understanding gained from these experiences and used it to increase others’understanding and hopefully to bring about a more caring society. There is the satisfaction and pride in seeing how they have incorporated the commitments of an ethical life: To shape a more humane world, educate ourselves (and others), and act with integrity. So here’s the good stuff.

Soon after Lowell learned he had TS, he testified before the FDA on why so-called ‘orphan drugs’ should be subsidized so that rare illnesses could be treated even if there was little or no profit to the drug manufacturers. That medication he spoke in support of is now commonly used in the treatment of TS. His response to the rejection and scorn he met was a photo essay on a doctor with TS, published in Life Magazine, with a text by Oliver Sachs, making it the first article in a mainstream publication about this syndrome to reach a mass audience. A few years later he teamed up with a filmmaker with a mild case of TS herself, and they produced a documentary video. Twitch and Shout was shown at the Boston Museum of Fine Art, the Kennedy Center, the Museum of Modern Art in NYC, won several awards and was nominated for an Emmy and shown on PBS to millions of viewers. His memoir was published in 1996, the first written by someone with the disorder, describing what it’s like, for the average reader. It is used as a text in medical schools. Lowell’s next book, scheduled for publication by the U. of Minnesota Press, is titled Crazy, Proud, and Homeless, about mentally ill women living in New York City shelters.

Lillian is returning to her work as a graphic artist, starting a new job tomorrow. She has three children, two boys and a girl. The oldest, a 13-year-old boy has a mild case of TS. She is a most understanding mother, well informed, and much better prepared to deal with the challenges than her mother was. She also is a pillar of her community, reaching out to families in crises by organizing food drives and toy collections, providing her children with a strong, steady role model.

Evan originally wrote Time on Fire as a monologue for him to perform on stage.

It is a railing indictment of Memorial S-K Hospital, the medical establishment, and the cold indifference of medical treatment as he experienced it. I’ll read from Frank Rich’s review for the NY Times:

"Evan Handler is a young actor perhaps best known to NY audiences for his duels with Nicole Williamson in the ill fated Broadway comedy I HATE HAMLET. As it turns out however, Handler has had far more difficult battles in his life — two occurrences of Leukemia when he was in his twenties. In TIME ON FIRE — his solo piece at the Second Stage Theatre, Handler turns this nightmare into a monologue in which intimate autobiography, grotesque medical history, hard won philosophy and gallows humor all intermingle. TIME ON FIRE does amazingly have a happy ending, defying all odds for Handler is now in good health. And by telling his story on stage, Mr. H not only practices good therapy, but also reveals real talent as a writer. He has a sense of drama as well as humor about his plight, he has no self pity and he has an evocative way with words. …As a performer he is most engaging and a funny mimic. TIME ON FIRE runs through June 3. At the very least it sould be seen by every hospital staff in NY for if H’s experience at SK is typical, some the city’s large medical institutions could teach Dante a thing or two about hell."

The show was a smash hit in NY. The William Morris Agency asked Evan to adapt it for the lecture circuit. HMO’s, oncologists’ associations, medical school faculty and students, and various health care providers paid him large sums of money to tell them how bad their practices are. He performed it for Beth Israel Hospital at Carnegie Hall and for a Swedish National Medical Society in Stockholm. He has done charity appearances for Cancer Care, The Leukemia Society and cancer survivors’ groups. His book is used in medical schools as a text.

To paraphrase the final commitment of Ethical Culture, life itself evokes an awe-inspiring response.