As for the cause of Merrick’s deformities, the explanation is still somewhat of a mystery. He himself reportedly believed that his physical characteristics were a result of his mother’s encounter with an elephantbut experts originally thought they were caused by elephantiasis. Now, scientists believe Merrick suffered from an extremely severe case of neurofibromatosis and/or a rare disease called Proteus syndrome.

In 1884, Merrick made a life-changing decision. “He decided to check himself out [of the workhouse] in order to put himself on display as a ‘freak,'” Durbach says. Merrick reached out to Sam Torr, the proprietor of a Leicester music hall called the Gaiety Palace of Varieties. Soon, Torr was exhibiting Merrick as “The Elephant Man, Half-Man, Half-Elephant” and he achieved great local success before moving his act to London. To avoid harassment in public, Merrick often donned a cape and veil to conceal his appearance.

“I am interested in him because he deliberately chose to exhibit himself as a ‘freak’ because he felt that this was a form of labor and he preferred honest work and earning his own living and the independence that provided to charity or government welfare,” Durbach says.

A surgeon named Frederick Treves came across Merrick’s story and invited him to visit his hospital for an examination. At that point, Merrick’s head had grown to a circumference of 36 inches (90 centimeters) and his right wrist measured 12 inches (30 centimeters) around. He had tumors covering his entire body and now exclusively walked with a cane, but Treves found he was otherwise in good health. Treves presented Merrick to the Pathological Society of London and asked him to come back to the hospital for more exams. But Merrick refused. He later said the experience made him feel like “an animal in a cattle market.”

“Merrick was a very independent and intelligent young man,” Vigor-Mungovin says. “No one forced him into exhibiting himself — this was his decision. He could either live out his days in the bleak, grim, harsh Leicester Union Workhouse, or go out there and make a life for himself. Merrick chose life.”

Merrick relocated and tried to find success in Belgium, but he was taken advantage of by an unscrupulous manager there, who robbed him of his life savings and abandoned him. The sum that was stolen from him was considerable, indicating that he had been able to make a decent living and find some success. By June 1886, Merrick was able to find a passenger ship back to England, where he was subsequently deemed “incurable” by doctors at the London Hospital. The chairman of the hospital, Francis Carr-Gomm, published a letter in The Times describing Merrick’s case and requesting assistance. The letter garnered an outpouring of financial donations, which Merrick was able to use for housing through the remainder of his life.

Merrick’s condition, however, continued to worsen, and on April 11, 1890, he was found dead at age 27, lying flat on his back in bed. Because of the size of his head, he’d spent the majority of life sleeping upright, resting his head against his knees. “I think that people should understand that it is highly likely that Merrick committed suicide,” Durbach says. “It appears that he requested to be released from the hospital so that he could return to the show world, but his support network outside the hospital was repeatedly denied access to him. There is really no better explanation for his death than he understood that lying flat would lead to his death.”

Durbach says Merrick was also very likely keenly aware of his fate. “The most interesting thing about Merrick is that he understood that after his death, he would become an anatomical specimen for display by the hospital that had claimed to give him refuge,” Durbach says. “He used to talk about ending up ‘in a huge bottle of alcohol,’ indicating that he believed that the hospital was not really that different from the freak show.”

While many accounts claim Treves was Merrick’s close friend and confidante (he even wrote a book about him), Durbach says that likely wasn’t the case. “Treves didn’t even remember that his name was Joseph, calling him ‘John’ in his memoirs,” she says. “Thus I don’t think Treves knew him that well or cared much for him.”

When Merrick died, the hospital declared that there would be no post mortem, but it did take tissue samples and made body casts, presenting one to the Royal College of Surgeons, “presumably for installation in the Hunterian Museum alongside the remains of ‘the Irish Giant’ and the ‘the Sicilian Fairy,'” Dubach says. “Thomas Horrocks Openshaw, the pathological specimens curator at the London Medical College’s Pathological Museum, then stripped the body of its flesh and boiled down the bones for articulation, as the House Committee had decided that the skeleton should be set up in the College Museum.” Merrick’s solitary life was capped by an impersonal, unceremonious end in which an undertaker removed his remaining flesh and internal organs and buried them in an unmarked grave.

“If Treves and the hospital cared for Merrick, why did they not bury his remains in a marked grave instead of disposing of them in this cheap way?” Durbach says. “I think they just saw him as a pathological specimen.”

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