Hilary and Jackie

A Commentary on a 1999 motion picture from October Films staring Emily Watson and Rachel Griffiths, and a memoir published in 1997 by Ballentine Books (formerly titled A Genius in the Family) by Hilary du Pré and Piers du Pré.

Hilary and Jackie is a true story of MS in the family. You may recognize some parts of it as your story, too. It is also a story of a genius in the family, demonstrating once again that MS can and does strike anyone. Jacqueline du Pré's musical genius (she could sing nursery rhymes in tune by 18 months of age) was no protection against MS, although the unique depth of emotionality she expressed through her "cello voice" may well have been due to MS damage to the emotional centers of her brain.

The Oscar-nominated motion picture deals with the facts of Jackie's life somewhat loosely and gives a less accurate picture of her history of MS than does the book. I strongly recommend the marvelous Barrington Pheloung (Inspector Morse on PBS) musical score, however. The motion picture is important because of the focus on MS that it brings to public awareness. Emily Watson captured Jackie's vulnerability, her loss of emotional control and disinhibition (if not her clumsiness) beautifully, however it was not clear in the motion picture that Jackie's emotional problems were a symptom of MS, as this was not known by her family at the time. Today we know that the risk of Bipolar disease is 15 times greater for people with MS than that of the general population. There are also medications today to better treat this condition than there were in 1971. It is necessary to counter the statement in the film that MS is a fatal disease, with the fact that MS is rarely fatal and the expected lifespan is about normal. Only 3% of people with MS have a malignant form of the disease in which premature death can occur in a matter of a few years. Jackie was unusual only in the fact of the documentation of her symptoms from such an early age.

Many people who are diagnosed with MS have experienced isolated symptoms for years prior to a diagnosis. I have spoken with a great many who describe symptoms experienced in their teenage years, and one mother whose 3 year old had a confirmed diagnosis from Children's Hospital in Seattle. I have also found a reference in the MS literature to a 17 month old who was diagnosed with MS. In Jackie's case, what has been described as a rapidly progressive form of MS (14 years from diagnosis to death from pneumonia), is more accurately conceptualized as such only because the previous symptoms presented as isolated instances, hence although a diagnosis was suspected at several different times, it was never made. It is interesting that one of the du Pré's distant relatives had MS.

When Jackie was diagnosed in 1973 at 28 years of age, a delayed diagnosis did not matter as much as it does today because there were no treatments to slow the progression of the disease. Today, it is important to get an early diagnosis so treatment can be initiated at the first possible opportunity. What if the ABC drugs had been administered to Jackie at the age of 14, the first firm evidence of symptoms her sister Hilary documents in her book? Jackie's personal tragedy, the loss of the ability to express herself the only way she knew how to - through her cello - is matched by the loss to her husband and family of the Jackie they knew due to the radical personality changes that MS had wrought. The musical world mourned her loss when she could no longer speak through her cello due to numbness in her hands at the age of 28, which was an irony: the MS, which made her emotions so inescapable to her, also took away the physical means to express those same feelings.

A Chronology of Jackie's Symptoms Prior to Diagnosis

I am going to quote extensively from Hilary and Piers' book to show that Jackie did go through an extended relapsing-remitting stage of the disease before the progression became inexorable. They had access to letters, and many scrapbooks of Jackie's career dating from her early childhood to jog their memories, and also interviewed many people who knew Jackie including doctors from whom she had sought treatment.

As a child Jackie tired very easily on family walks. At 11, Jackie no longer went to school, she wanted only to play her cello to which she had been passionately attached since the age of 5. At the age of 14 she was described as "gallumphing, gauche and clumsy". She was exhausted by a game of catch, she regularly stayed in bed all morning, and was lethargic, she was always very tired. At 16, she said that she couldn't run anymore. She exhibited a lack of energy, seemed depressed and was disinterested in her cello (she had never needed to practice very much, her mastery of the instrument just seemed to be there). She lacked motivation and seemed confused. Hilary refers to her "powerful temperament" and her "disarming honesty."

After her acclaimed Wigmore Hall solo debut at the at 16, Jackie went to study in Paris (her first time living away from home) and was notably disorganized and utterly worn out. Jackie had had a most unusual childhood. Her mother's father had died at the time Jackie was born and her mother formed a particularly intense bond with Jackie which endured until Jackie became overtly hostile towards her mother after her emotional breakdown at 26 years of age. Jackie's grandmother did all the cooking and cleaning for the family, and Jackie's mother saw Jackie as her "job": she did everything for Jackie; they were inseparable. She taught the girls music lessons beginning when Hilary and Jackie were small children, then later escorted Jackie everywhere. When abroad, Jackie mailed her laundry home to her mother, who returned clean clothes. This co-dependency excluded her father who immersed himself in work, and her older sister and younger brother.

In 1962 Jackie described weakness in her third and fourth fingers; cello practice caused aching due, she thought, to her teacher requiring a different hand position than she had been used to. The lack of initiative shown earlier can be seen in her not knowing what to do with herself when she wasn't practicing. A certain self-centeredness is evident in her romantic (emotional, soloistic) performance of a baroque ensemble piece. She was filling in for the second chair, but played all the solo parts dramatically and wondered why the first chair soloist was playing along!

At 19 Jackie moved out of the family home despite her mother's fears that she wouldn't be capable of looking after herself, mum felt she couldn't cope well enough. Mum still came by her apartment to sort out her clothes, tidy up, shop for groceries and help with her arrangements. Her personality is described as "increasingly flamboyant" and there are examples of her disarming honesty turning into disinhibition of language and behavior. She was a brilliant mimic, and had a huge repertoire of crude jokes. She was careless about looking after her world-famous, very expensive cello.

At 20 years of age, Jackie began performing internationally. Several reviews referred to her playing as being "too aggressive and wayward, with wrong notes and a thin tone." Was she perhaps also experiencing memory problems as well as control problems with her cello? She told her sister that a recording had only taken 30 minutes straight through to perform, rather than the 4 sessions and 37 takes it actually took. Jackie was also showing signs of impulsivity - she would cancel concerts at the last moment if there was something else she wanted to do. When abroad, she called her mum to ask to come home. She seemed confused, sometimes barely knowing where she was. Her mother joined her. At the age of 21 she apologized to her mother for her tantrums; she was having emotional control problems as well as cognitive problems. She also had a problem with her eyes, but the blurred vision had gone away before the doctor saw her.

At 22 she married the pianist Daniel Barenboim, also a former child prodigy. "She had a spontaneity leading her to extremes of musical expression and her exaggerated movements were beginning to upset some critics." She was absent minded and often had no idea what day it was, rarely putting the date on her letters. She visited a doctor about her constant urge to urinate, and he suspected MS, but as there were no other symptoms he didn't say anything. By the next year her exhaustion made it harder and harder to keep up with her husband's extraordinarily busy lifestyle. When she was 25 she was presented with a magnificent and exquisitely decorated cake. When it was handed to her, she dropped it. Jackie had had skin moles removed, and when she came round from the operation, she complained of numbness on the left side of her body. It lasted for a few days and then went away. Jackie told a friend that her marriage was over (she later told Hilary that the main reason for her break-up with Danny was her lack of sexual responsiveness to him), and she also knew she would be paralyzed and not able to play the cello anymore. The next year Jackie called Hilary from America. She was almost incoherent. "Come and get me, I'm in the hotel, I can't remember what it's called. They're going to put me in the loony bin."

Jackie's Retreat From the World

Back in England again, Jackie came to stay with Hilary and her husband Kiffer when she was 26. She was emotionally distraught and inconsolable. Her ups and downs were alarming; she fluctuated from great heights to unfathomable depths and seemed permanently exhausted. She refused to speak to Danny, and spoke bitterly of her parents and would neither see, nor speak to them. In an elated mood she threw away her antidepressants. She was increasingly hysterical, in floods of tears, nothing could staunch the flow: she could not talk, listen or reason. Her face was tortured, her eyes staring and wild. She sounded demented. Jackie transferred the dependency of her earlier years to Kiffer, although when she began therapy with a psychoanalyst in London, her dependency on Kiffer lessened. At this time Jackie experienced patches of numbness in her arms and legs and the soles of her feet. She had difficulty holding her cello bow, and had occasional blurred vision in the left eye.

At 27, Jackie was unable to complete recordings at the studio because she became too tired and had to stop. Her sense of humor had soured: She twisted matches in a book and told others they were "made by a cripple." The next year the music critics complained of her "self-indulgent playing, rasping tone and missed notes." She had been noticing for some time that her hands were not responding; she felt that they "hadn't warmed up properly". She couldn't lift her cello out of the case for a Carnegie Hall performance, her left hand was completely numb, and she couldn't feel the strings at all. She began stumbling and falling. MS was finally diagnosed when she was 28, and she had to give up her concert career. In retrospect, the relapsing-remitting stage of Jackie's MS was over and a new, progressive stage began.

Devastation

Jackie's turbulent, emotional storms continued. Hilary's visiting children were greeted with lecherous laughter, and Jackie also became incontinent. Danny worked in Paris but provided her with a caregiver, psychoanalyst, physical therapist, visiting nurses, cook, cleaner and driver in London. Her caregiver helped her make decisions as her mother had done before. For the next five years, Jackie appeared in her wheelchair at concerts and the theater. She taught master classes, had private pupils and entertained almost every evening. She could only concentrate well when listening to her own music on the record player. Her self absorption can also be seen in her lack of responsiveness to her father's Parkinson's diagnosis, or her brother's new baby. She was extremely intolerant of noise, obsessed with rude jokes, and delighted in shocking people. She made vicious remarks about her caregiver and was belligerent to her family, but whenever others came into the room her countenance would change. As soon as they left, she would begin the criticisms again. Her personality had changed, her speech and swallowing were now affected and her short term memory was failing.

When Jackie was 40, her mum died and Jackie slid downhill very quickly. She could no longer feed herself or drink from a cup unaided, and she would shake uncontrollably. She died of pneumonia at 42. It is likely that Jackie had lived with MS for at least 28 years.

by Ann Crickmer, MSW
9/2000

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