A man of dignity: Joseph Carey Merrick, 1862-1890

Joseph Carey Merrick was a young Victorian Englishman who became best known as "The Elephant Man" after a brief career in circus sideshows. He suffered from a possible combination of NF1 (neurofibromatosis) and Proteus Syndrome, an extremely rare condition which causes overgrowth of tissue, nerves and bone. Currently there are only 200 cases of Proteus known worldwide.

Born in Leicester, England to Joseph Rockley and Mary Jane (Potterton) Merrick, young Joseph appeared normal as a baby but began to show symptoms of the disorder before the age of two. By the age of fifteen, he had developed oversized limbs and tumors covering most of his body.

His mother Mary Jane was a staunch ally when Joseph had to endure taunts and abuse from his schoolmates. She was a Baptist Sunday School teacher who taught her son to read and write. She passed down to him a passion for reading that lasted all his life. Mary Jane had three more children after Joseph.. A newly discovered second son, John Thomas, was born in 1864 but sadly lived only three months. Their third son, William, was normal and healthy, but died of scarlet fever at the age of five. Marion Eliza, born "crippled," died of myelitis at twenty-four, a year after Joseph. Mary Jane herself succumbed to pneumonia on her thirty-sixth birthday, four months before Joseph had turned eleven. Her death devastated the Merrick family. The elder Joseph moved the family into a boarding house run by an Emma Antill, widow with two children of her own. They married in December 1874, and the new Mrs. Merrick treated young Joseph with unrelenting cruelty. After his father took him out of school, Joseph found work at a cigar factory and did well until his right hand grew so large he could no longer roll the cigars.

Joseph had taken a fall at age five and injured his hip badly, leaving him barely able to walk.. Nonetheless, his father had opened a habderdashery (hat) shop, and decided to send Joseph into the streets hawking accessories from the shop. This was a disaster, as by now Joseph's face had developed disfiguring tumors that impeded his speech and drew unwanted stares and jeers. His forehead was overgrown with bulging lumps of bone, and his spine had become severely twisted due to scoliosis. Walking became painfully difficult, yet his father forced him to meet a sales quota every day and thrashed him if he didn't, which was often. Unable to stand the abuse, Joseph fled to his uncle's house and lived there off and on for two years. Charles Merrick ran a barber shop and treated Joseph kindly, but with a growing family was no longer able to shelter his nephew. In desperation, Joseph signed himself into the Leicester Union Workhouse rather than go back to his father's house. He left after six weeks, only to return for four years, enduring brutal work conditions and abuse from fellow inmates.

It's not known how or when he decided to go on tour as a novelty act, but a local entrepreneur named Sam Torr signed him up and formed a consortium of showmen to manage him. They called Joseph "The Elephant Man, half-a-man, half-an -elephant." Despite the garish setting, Joseph thrived in his new career and was treated well by his managers. He was paid generously and eventually amassed a savings of fifty pounds, easily more than a single family might earn in a year. He hoped eventually to buy a small house in the country and live quietly.

In November 1884, Merrick was taken to London and appeared in Whitechapel across from the London Hospital. His manager, Tom Norman, also known as 'The Silver King," provided a home for Joseph and ran several shows each day, attracting wide attention from Londoners and the medical staff of the hospital. Dr. Reginald Tuckett visited first and told his colleague, Frederick Treves, about the Elephant Man. Treves, a prominent surgeon and anatomist, immediately became interested and arranged to present Joseph to the London Pathological Society in hopes of learning more about his condition. Joseph's symptoms were so bizarre that no one could piece together any sort of conclusion. Shortly afterwards, police closed down the show on grounds of indecency, forcing Norman to send Joseph back to Leicester.

Merrick toured with Sam Roper's circus for several months, but drew increasing unwanted publicity and show closings. Finally, his managers sent him on tour with an Italian showman named Ferrari, who took the Elephant Man to Belgium. Police shut down their shows in rapid order, and Ferrari abandoned Merrick, stealing all his savings. Destitute and starving, Joseph made his way back to England and was mobbed at Liverpool Street Station. This time the police rescued him. Joseph still had a business card from Frederick Treves, who was summoned to the station. Treves smuggled Merrick into the London Hospital and took him under his wing. After receiving approval from the hospital's governing committee and generous funds donated by the British public, Joseph Merrick was given a permanent home at the hospital in 1886.

Treves visited him daily and even spent two hours with Merrick every Sunday. He learned to understand Joseph's restricted speech and became his closest friend and doctor. Joseph was cared for by a volunteer group of nurses and hospital staff, and made comfortable in a small apartment in a remote wing of the hospital called Bedstead Square. Though he was only allowed to venture outside by night to the hospital garden, he flourished in his new home, making cardboard models from kits, learning basketweaving, and writing poetry. He especially enjoyed books, and received many from wellwishers.

Gentle and sweet-natured, Merrick made the best of his increasingly painful days. He was visited by Treves's colleagues, who examined him and studied his worsening disorder.. It could be argued that he was still being put on display, but it was the price he paid for a permanent home. His case drew wide attention in London's high society, and he was often visited by Alexandra, then Princess of Wales. A prominent stage actress, Madge Kendal, became a generous patron and arranged for Joseph to visit Drury Lane theater under careful arrangements to keep him hidden from the audience. Joseph was transported with delight and talked for weeks of the pantomime he had seen. Another patron, Lady Louisa Knightley, arranged for Merrick to stay at her country estate, where he could roam freely and undisturbed in the woods and quiet hills. There were three trips in all, and he was treated kindly by his hosts and local residents.

By 1890, Joseph's condition had deteriorated and his heart was no longer sound. He was prematurely aged and his speech was barely intelligible. Yet he endured it with quiet dignity and attracted a circle of loyal friends as well as many admirers who sent cards and gifts. Whenever the Prince of Wales went on a hunt, he sent game for Joseph's table. Frederick Treves grew deeply concerned that Joseph's days were numbered, but was not prepared for how suddenly Merrick died Due to the weight of his massive head, Merrick had to sleep sitting up with his head braced on his knees. He had once explained that he risked dying of a broken neck if he tried to lie down, and this did turn out to be the cause of his death. Though Treves wondered if Merrick had deliberately tried to sleep "like normal people," recent research and intensive study of his skeleton by an international team of scientists has revealed that Merrick's death was accidental and instantaneous.

Joseph Carey Merrick was only 27 when he died on April 11, 1890, but his life and legacy have had a lasting impact. Modern-day sufferers of Proteus syndrome have drawn inspiration from Merrick's never-ending quest for human dignity. A study in 2002 compared Joseph's DNA with that of living family members and concluded that he was genetically "one of a kind." Some researchers have proposed calling his unique condition "Merrick's Disease.". Medical research has gained a fuller understanding of Proteus Syndrome that has led to a far-reaching genome study. They hope to find a cure for this rare condition and its sufferers.

Joseph Merrick's preserved skeleton in the Royal London Hospital Medical College has recently undergone CT scanning and analysis by scientists for a "Discovery" television documentary, "Meet the Elephant Man," which first aired March 23, 2011. Using CGI animation, they were able to understand how Joseph walked and talked. A worldwide audience has come to appreciate Merrick's endurance and tremendous strength of character. Joseph often ended his letters with a quote adapted from "False Greatness' by Isaac Watts.

"Its true my form is something odd, But blaming me is blaming God; Could I create myself anew I would not fail in pleasing you.

"If I could reach from pole to pole Or grasp the ocean with a span, I would be measured by the soul; The mind's the standard of the man."

-article by Siu Wai Stroshane, "Friends of Joseph Carey Merrick"

"Measured by the Soul: The Life of Joseph Carey Merrick," by the Friends of Joseph Carey Merrick, a new full-length illustrated biograph of Joseph Merrick, is now available at http://www.lulu.com/shop/jeanette-sitton-mae-siu-wai-stroshane/measured-by-soul-the-life-of-joseph-carey-merrick-also-known-as-the-elephant-man/paperback/product-20553669.html