Promo Video for the Book on Youtube

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THE BOOK IS DOING WELL...

But we want to see it go viral! Announce it on every blog and social network you belong to. The comments we've received are very positive, with people glad to see new, fresh work on Joseph. The people who are in it are thrilled as well. Please drop by to purchase a copy on Lulu.com Type in "Measured by the Soul." You'll see a hardcover deluxe version for $18.50, or a lovely softcover version (the most popular) for $14.06 (odd price, I know.) 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

BREAKING NEWS: OUR NEW BIOGRAPHY OF JOSEPH!

Measured By The Soul: The Life of Joseph Carey Merrick A groundbreaking biography on Joseph Merrick (also known as, The Elephant Man), written by the Friends of Joseph Carey Merrick. 229 pages dedicated to telling Joseph's true life story, with newly discovered facts. For example, the whereabouts of his parents’ separate graves, details of a unknown baby brother, who died of smallpox. There’s a 19th century classroom photo of Joseph’s school and another, of the chapel where his mother taught Sunday School. Over 50 grayscale photos, illustrate this true story. The cover, atmospheric, and rich in sepia tones. You will read chapters like, 'Angels of Mercy’, (the nursing care Joseph's received at the hospital) and, 'Peace At Last' (dedicated to the happiest time of his short life). Included also in the book, are rare accounts by present day Proteus Syndrome patients: Jordan Whitewood-Neal (UK); Lisa Bartlett (Australia) and Brian Richards (USA). We hear from geneticist, Leslie Biesecker, M.D. of the Human Genome Project, who has discovered the cause of Proteus Syndrome, pointing the way to new treatments anda hope for its ultimate cure. Each purchase of the book benefits Proteus Syndrome research. Available on Lulu.com and coming soon to Amazon!

An Experience That Changed Me: An Essay by Audrey Kantrowitz

There are many people in the world who deserve the title of “hero”, or some other magnanimous title that shows that they are loved and admired. They write eye-opening books, like author Victor Hugo, who saved the life of a neglected cathedral. They make speeches, like Martin Luther King Jr., who stirred a generation to break Jim Crow's oppressive chains. They win battles like William Wallace, who fought with passion for his holy Scotland, and dealt those who would take it away with a swipe of his mighty claymore.

These three men have earned their colors. They are heroes in their own way, and still receive recognition for their great works. Yet the soul who has firmly staked a claim in my heart did none of the deeds listed above. He did not need to bear the burden of any of those virtues.

His name was Joseph Carey Merrick, but came to fame under the auspicious moniker “The Elephant Man”. Since I was thirteen years old, I devoted myself to learning as much as I could about this strange, yet beautiful human being, and now he is a solid part of my life. Through his dignified manner and unflinching kindness, he showed me how to be a better person.

Some time ago, I was given the greatest honor I could ever have imagined. I was at last allowed to meet Joseph Merrick in person. I was in rapture. I was about to do something I had dreamed of since my tender Middle School years. Not only was I allowed to sketch my muse and hero, I had been permitted to tell him how much he means to me. Sadly, the only visitors he receives anymore are doctors and medical students. His twisted, disordered skeleton stands in a glass case, along with plaster molds of his head, arms, and foot. To think Merrick's unfortunate facade once made men recoil in disgust and women faint. For me, there is nothing at all ugly about him. I imagine this is due to my artistic need to draw and paint him, making me immune to whatever trivial horror there was to his appearance. As I sat before him that day, immortalizing his image in my sketchbook, I looked up into those lifeless holes where such piercing brown eyes used to be. Hot tears ran down my cheeks as I spoke to him.

“There are people who still love you,” I kept repeating. “You will always be remembered.”

Though I have shed my sadness for Joseph Merrick, little did I realize how much my little visit would cost me. It has been two years since I stood face to face with my hero. Two years since I told him what was in my heart. Before my visit, I felt that only his image had been tattooed on my brain, yet now I feel that his pain and sorrow are now there as well. David Lynch's film “The Elephant Man” is one of my favorite movies. In the past, I felt no anguish while watching it, especially during the ending with that soul-crushing music written by Samuel Barber. To me, it was just actor John Hurt who was lying down to die. Yet now, when I watch that scene, I see only Joseph. I see the agony of a disordered body that imprisoned the soul of a gentle, kindly, and intelligent man. It brings me right back to that day where I looked into those hollow sockets and told him that there are people who are still moved by his shining example of goodness. I only wish I could have met him in the flesh, but I believe that, in a way, he knows. God bless you, Joseph Merrick. You shall always be loved.

Behind Your Mask

After first seeing the film "The Elephant Man," I was moved to write a song for Joseph (who was called "John" in the film and Broadway play of the same name.) I was haunted by the idea of a living, suffering being with a gentle soul and longing for human contact, forced to wear a concealing mask whenever he was in public. You might say he spent his life behind a mask, until Frederick Treves brought him to the London Hospital and introduced him to society.

Even then, Joseph could only go outside at night, concealed in his iconic hat, mask and cloak. When he went to Drury Lane Theater, he needed to be shielded from the public gaze. That required elaborate arrangements --smuggling him into the theater by the royal entrance and seating him in a private box behind three nurses in evening dress.

Visits to the countryside required more elaborate preparation. Joseph was conveyed in a cab with drawn blinds to a second-class railway car on a separate siding from the main train. He boarded there and then the car was coupled to the rear of the train for his journey to Northamptonshire, for a wonderful holiday on a private estate owned by Lady Louisa Knightley. Only then could he roam freely in the woods by daylight, savoring the fresh breeze and warm sunlight, the sights and sounds of animals and brooks. He wrote excited letters to Treves and other friends, pressing flowers and leaves between the pages. Those three extended holidays gave him a taste of freedom the rest of us take for granted.

In my work at an elder home, I am reminded of Joseph. The residents, some of whom are unsightly and frozen in wheelchairs, don't wear actual masks, but their mental state keeps them confused and foggy most of the time. They are like living statues. Yet if you sit face to face, touch their hands and speak their names, they respond, often quite eloquently. As with Joseph, people underestimate how much these elders understand, think, and feel. I wish I could spend hours with each one of them as Treves did with Joseph, drawing them out and encouraging them to express their thoughts, but the busy schedule only allows for a few brief moments with each person.

A few years back, the celebrated neurologist, Oliver Sacks, wrote a book which was made into a film, called "Awakenings," about his patients with equine encephalopathy - many of them had spent decades in a frozen trance. The use of L-dopa seemed to miraculously bring them back "to life," but they were convinced it was still the roaring twenties. People emerged as individuals with passions and memories - for a short time anyway. The drug had mixed success and some had to be taken off it. But the point of the film and this long blog is to reflect on how many people live behind some kind of mask, real or metaphorical. It only takes the human touch and a moment of contact to awaken them.

BEHIND YOUR MASK (for Joseph Merrick)

I saw a photograph of you the other day

Far beyond my strangest dreams

A sidehow of the age, a showpiece on an English stage

where horror mixed with love like a bitter wine.

Behind your mask you were a dreamer

A suffering heart

Behind your mask, you had the courage to be a man

And I wish I could have known you

I wish that I could have seen behind your mask

where you lived and dreamed.

I heard the story of your life the other day

Far beyond my strangest dreams.

Building a cathedral in your room, lonely man

Living with your poetry and portraits of fine ladies

You longed to be the hero of their hearts

Behind your mask, you were a dreamer.

M Siu Wai Stroshane c 1982

Remembering Joseph's Last Day

April 11, 1890 122 years ago.

Joseph lingered late in bed. Some days he didn't have the strength to get up until noon.

At approximately 9:00 a.m, Sister Emma Ireland, his longtime nurse, came to attend to his needs. She spoke to him and left him settled and comfortable, but didn't notice anything unusual.

At 1:30 p.m., a ward maid brought Joseph his lunch for him to eat in his own time.
She was the last person to see Joseph Merrick alive.

At 3:00, Mr. Ashe, one of the young house doctors, stopped by to check on Joseph. He found Merrick lying across the bed and saw at once that he was lifeless. Shaken by the discovery, he left without disturbing the body, and fetched the senior attending doctor, Mr. Hodges.

They examined Joseph and determined the cause of death to be asphyxiation, probably due to the weight of his head pressing on his windpipe.
An inquest held three days later concluded that his sudden death was accidental, caused by asphyxiation.

Was Joseph's death accidental? Or did he choose to end the life he had sustained for 27 heroic years? In his last book, 'The Elephant Man and Other Reminiscences,"
Frederick Treves writes that Joseph lay flat deliberately, trying to "sleep like normal people" rather than in his usual sleeping position, sitting up against a pile of pillows.

Recent research by forensic anthropologist Rose Drew and orthopedic surgeon Alex Vaccaro concludes that Joseph's death was accidental. The damage to his spine was in the C-1 and C-2 vertebrae.

We can only hope the end was quick and painless, and that Joseph is now resting in peace.

The Elephant Man: A Study in Human Dignity

This is a review of the classic work by psychologist Ashley Montagu, who maintained that Joseph Merrick was able to love others because he himself had received enough maternal love.

An entire generation has grown up knowing Joseph's story, thanks to the semi-fictional 1980 film that was based on this book and Frederick Treves's memoirs. It's a powerful testament to Merrick's legacy of dignity and courage that he continues to move us. Treves's memorable account of Merrick, and this classic work both show us Merrick's humanity and remarkable ability to live without bitterness or hatred towards his fellow human beings.

But Frederick Treves did have a definite bias against Mary Jane Merrick, Joseph's mother. Though Treves knew she did not abandon Joseph at an early age, he accuses her of putting her son in a workhouse. Even though Joseph carried around a cherished portrait of his mother and spoke of her with unfailing love, Treves dismissed his stories as wishful fantasy.. In fact, he portrayed the highly intelligent young man in 19th century sentimental terms such as a "primitive elemental being" and "amiable as a happy woman." Treves took considerable literary license with his story. The known facts about Joseph Carey Merrick contradict the memoirs.

Dr. Montagu is right in asserting that because of the early nurturing Joseph received from Mary Jane Merrick, he was able to 'love, work and play." This shows in Joseph's generous sharing of his handmade gifts - models, baskets and poems. Montagu's case for the power of early maternal nurturing remains as solid as ever. The main flaw --which isn't really his fault - is that a lot of information on Joseph's life has become outdated since this book was first published. As others mention, the best work so far is "The True History of the Elephant Man," but there is a need for an even newer biography. Perhaps there will be one for the 21st century.

Joseph's Last Easter

Though we're still a few weeks away from Holy Week, I find myself reflecting on Joseph's last days. His condition was rapidly deteriorating, and it often left him so weak he stayed in bed until noon. Treves watched helplessly and tried to make him comfortable. There was little else he could do.

Yet Joseph maintained a core of spiritual strength, and attended the hospital's weekly Sunday services, thanks to the ingenuity of the chaplain, Reverend Tristram Valentine. To avoid alarming other patients or staff, Joseph was allowed to sit unseen in the vestry where he could take communion and hear the service. Perhaps in gratitude, he gave Reverend Valentine one of his visiting cards. They show the only known image of Joseph seated and wearing a three-piece suit specially tailored to his unusual form.

Joseph died on Friday, April 11, 1890., five days after attending not one but two Easter morning services. The Easter season with its story of Jesus's death and resurrection, must have been of great comfort to Joseph. We can only hope his end was peaceful..

Unsung Heroes: Joseph's Caregivers at the London Hospital

There’s no doubt that Treves acted out of compassion in his aim to provide shelter for a fellow human being in need. But Joseph would never have survived without the devoted care of his nurses and hospital staff. As the Head Matron declares in the film, “I bathed him, I fed him, I cleaned up after him, and I see that my nurses do the same.” This is exactly right.

For four years, the nurses, maids, and porters who volunteered to care for Joseph Merrick had to go out of their way to reach him. Armed with bath supplies, linens, medicines and meal trays, they made the trek several times a day up many flights to the Isolation Ward, and later to his home in the remote wing of Bedstead Square. They are truly the unsung heroes of Joseph’s last years.

February 15th,: It's Frederick Treves' Birthday, by Ann Li Oz

It's Sir Frederick Treves birthday today!(15 Feb 1853)
Actually though, I'm not completely certain on my feelings about him - while of course if it were not for him I'm sure Joseph wouldn't have lasted long after he arrived back in England, having been ''rescued'' by Treves at the station...My feelings are coloured because of how upset I am at what was done to Joseph after he died....and another instance in where he never allowed Norman to visit Joseph at the Hospital - for example. I feel sometimes that Treves wanted Joseph '' for himself'' in a way. I don't know. It's all very complicated - Treves is definately a complex and enigmatic character...

Could I Create Myself Anew...

...I would not fail in pleasing you." That line comes from a poem by Isaac Watts called "False Greatness." Joseph often quoted from part of it to sign his letters, perhaps as an assertion of who he felt himself to be. The lines he used run as follows:

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

Were I to 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.

On Youtube, a graphic artist has posted an extraordinary forensic reconstruction of how Joseph might have looked sans Proteus deformities. Go to Youtube and type in "Reviving the Elephant Man." It's a stunning animation that slowly strips away the excess skin and bone from a familiar clinical photo of Joseph and reveals a slim, Elvis-like young man, dark and handsome with a contemplative gaze. Not only are the tumors and lesions excised before our eyes, the painful scoliosis of the spine is gradually straightened, the right arm becomes a slender, lean counterpart to the left, with a small taut hand that matches the left. The abdomen becomes muscular and tight, the envy of any young bodybuilder.
The skin is smoothed out, the brow lowered, the giant skull slowly reduced to normal proportions, and the distorted lips become a gentle mouth. What would his first words to us be?

Hip Talk

One of Joseph Merrick's many tragedies was damage to his left hip, the result of falling when he was a child.  Nobody knows exactly how it happened, but the injury was left untreated and resulted in his becoming permanently crippled. He was left with a painful limp that kept him from moving fast or escaping taunting followers in public. The only aid he had was a walking stick. Frederick Treves must have felt helpless seeing Joseph struggle to get around.

Unfortunately, medical science hadn't yet developed total hip replacement (arthroplasty) as a remedy for hip injury and various forms of chronic arthritis. The first attempt was an operation carried out by  German doctor in 1891. Joseph died in 1890, just a few years too soon to benefit from this successful procedure that has brought relief to millions.

Having just had my left hip replaced with a high-tech titanium artificial device,  I can attest to the improvement I already feel. The surgeon cheerfully told me afterwards that he had found "bone against bone," meaning no cartilage was left. It was high time to have the procedure done, and I can look forward to an active, healthy life once again.

If only Joseph could have had a left hip replacement! He could have enjoyed less painful strolls in the hospital garden and out in his beloved countryside. There were so many " if-onlys" in his life, and that was a big one.

To learn more about the history of this fascinating and highly successful invention, visit http://en.wikipedia.org/wiki/Hip_replacement

Joseph Merrick & Leila Maturin

If you were on your way down a busy street and saw the famous, almost iconic figure of the Elephant Man in his sweeping black cloak, hat and concealing mask, how would you react?
Would you:

a) cringe and look away
b) stare
c) hurry away

I think we might do all three if caught off guard. Joseph's disfigurements, due to a rare disorder called Proteus syndrome, were so severe that some women would actually faint at the sight of him (although we're talking Victorian times and corsets so tight they could hardly breathe. Fainting was fashionable.) Someone who looks as strange as the little Elephant Man did would make us all uncomfortable, perhaps even queasy.

Now imagine that a friend of yours asks you to meet his friend named Joseph, who has lived a life of loneliness, shunned by most of mankind and convinced he's a monster. Joseph is gentle, softspoken, loves to read poetry, and speaks about all kinds of interesting things. All you would have to do is shake his hand, smile, and say hello. Your friend says this will make an enormous difference in the young man's perception of himself.

So you muster your courage and go to Joseph's small basement apartment because you want to do your friend a favor. At the first sight of Joseph, you might gasp, avert your eyes or suddenly feel dizzy. He really does look awful. But then you look into his eyes and see a living, suffering human being. You realize he is terrified of what you're going to do or say.

You discover it's not as hard as you thought to take his hand and say "I'm pleased to meet you." And you mean it, because you can see the pain in his expressive brown eyes and you want to let him know you care.

That's exactly what a young woman named Leila Maturin did when Frederick Treves asked her to meet Joseph Merrick. Her warm smile and friendly greeting shocked him so much he dissolved into tears, unable to believe a woman had just touched his hand and looked into his eyes without screaming.

If we come face to face with someone whose appearance frightens us, whose disability embarrasses us, think of Leila Maturin's simple act. Her smile changed Merrick's life. After that day, he began to see himself as human, as someone who was worth knowing. At the end of his short life, he was surrounded by people who had discovered how lovable he was behind that strange mask.

If we take the time to see behind each other's masks, we might find the same.

John Thomas Merrick: The Missing Merrick Child

Last summer, while Hurricane Irene raged up the East Coast of the US, work was canceled, and I had unexpected free time.  As always, I enjoy probing every aspect of Joseph's story I can find, and by sheer luck happened upon this gem while reading a Merrick family tree.

There was a FOURTH Merrick child, never mentioned in any of Joseph's biographies before. He was born two years after Joseph, on April 21, 1864, and named John Thomas Merrick. So there was indeed a "John" Merrick (and actually, the name is quite common in the Merrick family, as is "Joseph.") Alas, this little John only survived for three months, succumbing to smallpox in July of 1864. He was buried on July 21 in Welford Road Cemetery in Leicester.

This is significant in Joseph's family history. It means that Mary Jane was pregnant with a second child at around the time Joseph began to show the first sign of his disorder, at around twenty months. A small lump appeared beneath his upper lip on the right side, and began to grow firm, eventually pushing his lip upwards and almost inside out. This change in Joseph's face is probably what caused Mary Jane to think of her frightening encounter with a circus elephant when she was six months pregnant with him. Did she worry that her new baby would suffer the same fate, even without an encounter with an elephant?

It must have been a time of great worry and apprehension, praying that the new child would be healthy. It's quite possible that John Thomas was born normal, so that his death only three months later was all the more heartbreaking.  When William Arthur was born two years later, in 1866, the story was repeated, exceptWilliam survived for five years before dying of scarlet fever. Again, the Merricks' hopes for a healthy son were dashed. I wouldn't be surprised if Rockley Merrick's poor attitude towards Joseph grew with each disappointment and loss. Theirlast child, Marion Eliza, was born with a disability, "crippled" in their terms, and survived to the age of twenty-three before succumbing to myelitis.

A shadow of tragedy hung over the family, and it greatly weakened Mary Jane's health. She died on May 19th, 1873 at only thirty-six (though it was NOT on her birthday as is often stated.)

I wonder how Joseph felt when Treves insisted on calling him 'John?" Did it reawaken memories of the lost little brother who came and went before Joseph's second birthday? He would have been too young to remember him, but no doubt he heard of him, and perhaps Mary Jane went to lay flowers at the grave when she could.
Rest in peace, little John Thomas, restored to your family's story once again.