The Soundtrack of Loss

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World War I didn't have a number at the time it was fought. We didn't realize another hellish nightmare would engulf our little planet within the next twenty or so years. At the time it was called the Great War, although the only thing 'great' about it was the number of casualties. More than 8 million soldiers were killed from July 1914 to November 1918. The Armistice was officially signed the morning of November 11 of 1918, the eleventh hour of the eleventh day of the eleventh month.

The war was a slaughter, really. It decimated several countries, most notably Britain and Germany, each of which lost nearly 15 percent of its active male population. It upended long held perceptions, realigned class systems and led to a period of deep anguish and disillusionment for the many millions of people who had been directly affected by the horror of the conflict.

In rural Sussex, England, Edward Elgar, the composer, had been able to hear the artillery fire in France echoing across the English Channel. He was profoundly depressed by the war and the unspeakable toll it had taken. His music until this point had been bombastic and rousing for the most part, but, now 61 and drawing close to the end of his career, he was moved to write something that was rather out of character. As a tribute and an elegy, he created a cello concerto in four movements that was haunting and melancholy. Unfortunately, its premier in 1919 was not auspicious. Never having an opportunity to catch an audience, it failed to achieve a place in popular repertoires and soon faded into relative obscurity.

Image: Kevin Sullivan/The Orange County Register via ZUMA Press.

In 1965, at the age of 20, cello prodigy Jacqueline du Pré chose to resurrect and record the Elgar Cello Concerto with Sir John Barbirolli and the London Symphony Orchestra. The resulting performance was passionate and stunning and quickly developed legendary status. The Elgar Cello Concerto became one of her signature pieces.

So a composition written to mourn a massacred generation now became a best seller almost 50 years later, interpreted brilliantly by a beaming 20-year-old. Jacqueline was classical music's darling in the 1960's and when she and pianist (and eventual conductor) Daniel Barenboim married in 1967 that just doubled the allure. Their careers were on stellar tracks. It seemed there were nothing but good things ahead. Except that is not how it turned out.

When she was 26, Jacqueline began to notice a lack of sensation in her fingers and elsewhere in her body. She continued to play, but experienced more and more difficulty, her symptoms progressed and, emotionally fraught, her personal life became chaotic. She was finally diagnosed with multiple sclerosis, or MS. Despite attempts to defy the disease, she played her final public concert at the age of 28 and died of MS related causes 14 years later, when she was just 42.

MS is a relentless thief that had no cure when Jackie was diagnosed in the early 1970's and is still incurable today, almost forty years later. It is utterly unpredictable. Some people never experience anything more than mild symptoms that come and go. Others have a rapid and deadly decline. Most of the rest of us fall in between, with a more gradual but undeniable and grievous progression. There is no way of telling who will have what development. You just have to wait and see.

There are medicines available now that can slow the progression down. Called disease-modifying therapies, they all have considerable and serious side effects. And they don't always work. If they do work for a time, it usually is only a few years. Because MS affects nerves, it can cause damage and malfunction in any part of the body. Most of us experience fatigue, numbness and burning in our limbs, severe, painful muscle spasms and, eventually, considerable difficulty with ambulation.

Becoming immobile is like approaching the edge of a slippery slope. Although MS is not technically fatal, the accompanying complications -- pressure sores, bladder dysfunction, breathing and swallowing problems -- are the things that shorten our lives. Then there are the other costs of multiple sclerosis. In my case it has destroyed my career as a business executive and, as a result, my way of life. I loved my job, I loved to travel, I was so happy and, with my children almost grown, I looked forward to years of productivity and pleasure ahead. The future seemed limitless.

But I can no longer take care of myself alone. I have no more independence. I cannot run to pick up a container of milk or do my own laundry or clean my home. My marvelous, charming old house, which was my dream-come-true that I bought all on my own, is slipping out of my hands, as I can no longer afford it. My children, who already lost their father when they were little, have had a terrible time accepting my illness. One has gone so far as to cut me out of his life entirely, which is the worst, most excruciating loss of them all.

It is so unfair to expect them to take care of their mother and their own children at the same time. As a widow with no significant other, there is no other caretaker. It will not be long before I have to move to a care facility, as I can barely take more than a few steps anymore. With breathtaking, humiliating thoroughness, in six years I have gone from affluence to poverty, from walking to a wheelchair, from health to disability.


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