A full account of the life of Joseph Merrick, I fully and enthusiastically recommend The Elephant Man and Other Reminiscences, is a voyage unto itself. Running away from the grief and torment of home. A series of menial jobs as his condition further deteriorated. Homelessness on the streets of Victorian England, tormented and taunted cruelly. Tenures in "freak-shows," displayed as an oddity and sub-human creature, now Merrick's existence. Abandoned by a cruel and unscrupulous manager, and trying desperately to make his way back to the dismal though familiar streets he calls home, Merrick arrives, large sack over his head to hide his appearance, at London's Liverpool Street Station. The heartbreaking account of what transpires at the station is immortalized in the iconic clip below from the 1980 blockbuster film, The Elephant Man, starring John Hurt, Anne Bancroft, and Sirs Anthony Hopkins and John Gielgud, a film which would be nominated for eight Academy Awards:
As fate would have it, Joseph Merrick would eventually find refuge and salvation with two personal saviors, the first a kindly surgeon at London Hospital named Frederick Treves. Treves through his caring meetings, chats, and examinations would quickly discover that Joseph Merrick was far more than the monster which his appearance suggested and the "imbecile" which his almost unintelligible speech initially belied. He was indeed a human being; as he described him "shy," "sensitive," "affable," "kind and caring," and "highly-intelligent." The second savior was in the form of the hospital's chairman, Francis Carr Gomm. Realizing the severity of Merrick's situation, and realizing that the hospital was not equipped to provide a home for Merrick for-life, as was deemed necessary, Gomm began a fundraising campaign, a campaign in which he publicized the case of Merrick in the cream of British newspapers and medical journals. The resultant publicity and the concern it generated created enough funding to build a small extension on to the hospital, a comfortably furnished and decorated living quarter for Merrick, whose health was now deteriorating markedly.
Merrick would remain close friends with Treves and Gomm until the end, but his short life still had some inspiring and unexpected twists. Profound interest from London's high-society which resulted in many lasting friendships. A cast of prominent visitors. Vacations in countryside cottages. Serenades from musicians. Teatime gatherings with confidantes. And personal meetings initiated by the Prince and Princess of Wales, with whom he would maintain friendship and contact for the rest of his life. Perhaps at the time, his most profound legacy was assisting, through his character and humanity, in putting an end to the all-too common degrading and dehumanizing freak-shows of the era.
His condition and health now rapidly and critically deteriorating, Joseph Merrick passed from this world on April 11, 1890. He was 27 years-old.
The lessons to be learned are innumerous. Pain. Isolation. Bullying; the same bullying which takes place today in schools, in the workplace and in the streets. Merciless cruelty directed at those who look or act differently. Heartbreak. And ultimately hope, optimism, strength, determination, acceptance, understanding and love. Initial pity and free-flowing tears are to be expected, but in the end, these reactive emotions are far surpassed, and indeed squelched, by the sheer humanity of one man. A man who demonstrated with so much courage and dignity that beneath all appearances and disorders, we are all human beings.
Most Rare Diseases are considered "invisible." Few of us will ever have to suffer the type of torment experienced by John Merrick. I firmly believe, however, that anyone battling a Rare Disease can incorporate strength from the life of this kind and gentle soul. His life story can and should instill us, by-proxy, with inspiration, courage, determination, and a strong sense of perseverance for our battles which lay ahead. When we are down and despair, we can look to his triumphs as a catalyst for a renewed sense of hope and optimism.
John Merrick's formal diagnosis was unchallenged for almost a century, Neurofibromatosis Type 1. Further and more recent DNA testing on his remains have led to an additional diagnosis of the ultra-Rare Disease "Proteus Syndrome."
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