"I Am Not An Animal, I Am A Human Being!" - Joseph Merrick Did Not Have A Choice But I Do. What Choice Do I Make?

Joseph Carey Merrick (1862-1890)

Joseph Carey Merrick, often mistakenly referred to as John Merrick and known in the popular culture as the Elephant Man (5 August 1862 – 11 April 1890) was an English sideshow performer and celebrity The cause of his deformities is still unknown. Elephantiasis, neurofibromatosis type I and Proteus syndrome have all been suggested. In an autobiographical note, Merrick mentioned that his deformity began developing at the age of three with small bumps appearing on the left side of his body. Because of his condition, Merrick was unemployable (in the regular sense) for most of his life. In 1884, he took a job as a sideshow performer in a freakshow, where he was treated decently and earned a considerable sum of money. 

Extremity of Merrick's Skin & Bone Deformity

Later, Merrick came into the care of the physician Frederick Treves, who arranged for him to be housed at the London Hospital. Merrick became something of a celebrity in Victorian high society. Alexandra, then Princess of Wales and later Queen Consort, demonstrated a kindly interest. He eventually became a favorite of Queen Victoria. He was unable to sleep lying down due to the weight of his head, but may have tried to do so in an attempt to imitate normal behavior, leading to his death by suffocation. He was portrayed on stage by David Bowie and on film by John Hurt in a movie directed by David Lynch. 

You cannot imagine how I am fighting to get through this blog. My back and thighs, and wrists are all screaming with an itchiness that responds to nothing beyond a momentary relief. An by momentary I truly mean under a minute or two. I really want to finish this blog well because I care about Joseph Merrick and do not make any comparisons halfheartedly. In middle school, I saw David Bowie play the Elephant Man on Broadway in the brilliant play by Bernard Pomerance, and I identified so much with the sufferings of the main character because of my own struggles with stuttering. 

On stage, the lead actor has no make-up or special effects, simply creating the illusion of the deformity through posture, voice and movement. Such a rare and special aesthetic and spiritual experience for a young boy because it both consoled my soul while bringing me into a world long past that seemed realer than my own. I understood the passion in Merrick;s voice when he realizes and finally accepts the boon of his rescue by Fredick Treves: "Never had a home before... I have a home. This is my home."

David Bowie Playing the Elephant Man on Broadway

What happened next is a bit shameful in a silly way, but also the heart of one of the most creatively affirming moments of my youth. For years, I told people that I played the lead part of Joseph Merrick in the play in my high school. This is was a confabulation. In truth, my high school never put on a production of the play. I did play the role, however, in my acting class, in a scene where Joseph Merrick first meets Madge Kendall, the society lady and famous actress that takes him under her wing. I was a sophomore and Mrs. Kendall was played by a beautiful and smart junior named Steuart Osha. All of my memories of the experience are positive, and I believed it was my best acting performance ever in a medium-sized list of many mediocre showings. In that moment, my stuttering made me an outcast like Merrick's deformities. 

But today I am closer to Merrick than I have ever been before as the rash rages like a blitzkrieg across my body, covering my back and hands in the past few days while making initial forays onto my neck and across my chest. It is maddening and, unlike Joseph Merrick, I have a choice, I can stop taking this fucking medication and focus on the steroids that I need to put a stop to this advancement and start healing. Since the oral steroids are contra-indicated in the medical trials, I cannot take them while remaining in the program. But I have done it for over two and a half months, day after day of excruciating and endlessly banal suffering and itching and never more than 30 to 45 minutes of relief. I am on so many drugs and it take a train full of prescription sleeping meds like Lunesta and Trazadone to kncok me out so I can sleep. The next day, I am wiped out and suffering again. 

I don't know if I can keep doing this. I really want to end right now. But I don't want to be a quitter but the insanity and the screaming and the body under siege is beyond belief. Why does my leg have to look like it does below? Why should I risk letting it spread to my face and possibly even genitals? It's already all over my ass so I can barely sit down anywhere. Please let me know why I should continue if better drugs are coming soon? 

Right now both my left leg and my right hand are screaming and I have to dunk them in freezing cold water to make it stop!

My skin's like sandpaper. Why? 

The red bumps hurt? Why? 

The itching never stops. Why?

Why the hell am I continuing to do this to myself? 

It really seems like enough is enough!