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MEASURED BY THE SOUL: THE LIFE OF JOSEPH CAREY MERRICK

BACKGROUND

"Measured by the Soul: The Life of Joseph Carey Merrick,” is the first full-length work about Joseph Merrick also known as “The Elephant Man,” in over 20 years since Michael Howell and Peter Ford published their groundbreaking work, The True History of the Elephant Man" in 1992. Co-authored by Jeanettte Sitton and Mae Siu-Wai Stroshane of the Friends of Joseph Carey Merrick, this latest work features never-seen-before photographs and new research on Merrick's life, as well as important medical information and poignant interviews with modern-day sufferers of Proteus Syndrome. In 2011, the cause of PS was discovered by Dr. Leslie Biesecker of the National Institute of Health Human Genome Project, paving the way to new therapies and ultimate hopes for a cure.

Life of Joseph Merrick The legend of The Elephant Man usually begins as he is exhibiting himself in a penny freakshop in Whitechapel Road, just across from the London Hospital, (now the Royal London Hospital), in Victorian England. Frederick Treves, an anatomist and rising young surgeon with award-winning textbooks to his credit, ventures over to see this "Great Freak of Nature," as the garish posters announce.

Treves is drawn by a mixture of personal curiosity and professional ambition in diagnosing rare conditions of all kinds. What the doctor sees remains so vivid that thirty years later, he opens his memoirs with that first encounter with the Elephant Man. His description ranges from "the most repulsive human being" he has ever encountered to a "perverted" and "degraded" creature. He renders every detail of Merrick's condition in such graphic terms that the reader feels equally revolted. Though Treves later sets down coolly clinical accounts of the young man's condition in the medical literature, later generations will recall the Elephant Man only as a monster with an appearance so terrible that "women and nervous persons fly in horror at the sight of him." Treves's photographs of his patient only reinforce that impression.

Treves's memoirs give an unsavory description of the showman who presented "The Elephant Man" in Whitechapel, portraying him as an abusive owner and drunk. Actually, Tom Norman was a solid, experienced young showman with no drinking habit and plenty of discipline. He looked after the comfort of his living exhibits and split his earnings with them fifty-fifty. Joseph Merrick was given his own food and board, as well as all the profits from an autobiographical pamphlet sold at his shows for a penny each.

Unfortunately, freak shows were increasingly being closed as public opinion turned against them. The London police came to shut down Joseph's, aand he was sent back to Leicester. Later he toured with Sam Roper's Fair, only to find more show closings and decreasing earnings. An Italian (or possibly Austrian) showman took The Elephant Man to Europe, but found no better luck there. The manager robbed Joseph of his savings and abandoned him in Belgium. Starved and penniless, Merrick was forced to make his way home by boat train. He was mobbed by a curious crowd in Liverpool Street Station and had to be rescued by police. Fortunately, Merrick produced a business card with the name of Frederick Treves. The doctor came and transported Merrick to the London Hospital. He secretly admitted Merrick to an isolation ward and had him washed and cared for by volunteer nurses.

Thanks to donations from the British public and support from the Hospital's Governing Committee, Joseph Merrick was given a permanent home at the London Hospital. He met royaliy and beecame something of a pet in high society, but because of his disfigurement, could not venture outside except at night. Several carefully arranged trips to the theatre and the countryside brought him joy. He died rather suddenly ono April 11, 1890. The cause of death is liisted offically as asphyxiation due to the weight of his large head pressing on his windpipe, but Frederick Treves believed it was from a broken neck when he attempted to sleep lying down, like normal people.

RESEARCH

Frederick Treves' first research on the Elephant Man concluded that what he did not have was elephantiasis, a tropical disease caused by a parasitic worm. Treves's initial diagnosis was "pachydermatocele, with involvement of the long bones," a vague assessment at best. He and other specialists were stumped by the combination of deformities, from the oversized head and warped bones, to the fibrous tumors covering 90 percent of Merrick's body. Radcliffe Crocker, a skin specialist, added a piece to the puzzle with possible nerve involvement as seen in von Recklinghausen's disease (neurofibromatosis.) This remained the diagnosis for many years until 2001, when a theory of Proteus Syndrome (named after the shape-shifting god) was advanced. Modern theories have even proposed a combination of the two, or simply "Merrick's Disease," a one-of-a-kind disorder unique to Joseph Merrick. Scientists have reassured living memberrs of Joseph's family that their chance of inheriting his disorder is about one in a billion, putting their minds at rest.

In 2011, a team of scientists for Discovery Health concluded that Merrick's death was accidental, and the weight of his head snapped the top two vertrebrae of his spine, C-1 and C-2, causing stroke and instant death. This puts to rest theories of suicide.

Also in 2011, Dr. Leslie Biesecker, leading the Human Genome Project at the National Institute of Health in Bethesda, discovered the cause of Proteus Syndrome, concluding that it is a mutation of the AKT1 gene, leading to excessive tumor growth. This offers hope for new drug therapies for modern-day sufferers and ultimate cure of this acutely painful and difficult-to-treat disorder.

LEGACY

"Measured by the Soul" features an interview with Dr. Biesecker and three patients with Proteus, giving a unique perspective on their lives. The patients and their families look to Joseph Merrick for inspiration as a model of courage and dignity as he coped with his suffering and embraced life as best he could. All proceeds from the book go to the Proteus Syndrome Foundation and research.