When Eddy Newton was three years old, he developed a red blotch on his face. Then a lump under his right eye. His mother shuffled him from doctor to doctor, hospital to hospital, until a biopsy finally came back with a diagnosis.
“The doctor pulled out a picture of [Joseph] Merrick and told me this is what I will look like,” Eddy Newton told me. “And that I probably wouldn’t live past my eighth birthday.”
Joseph Merrick was the 19th-century British man who became the poster child for neurofibromatosis, better known as “Elephant Man” syndrome. Almost fifty when we spoke, Eddy had defied the odds and remains one of the oldest to survive such a severe strain of the condition.
Still, each day brings a succession of battles to stay alive. The native of Riverside, Calif., has had to endure dozens of major surgeries and dozens more minor ones to control the rampant and deadly disfiguration. When he was seven, a doctor removed a 7.5-pound tumor from his cheek.
However, the most challenging aspect of living with “Elephant Man syndrome” has been contending with the deep psychological scars it renders and the taunting that comes from his physical appearance.
“There was a lot of bullying, and I changed schools several times,” Newton recalled of his turbulent childhood. “But there were good people too. I’ll always remember my first day of elementary [school], and a classmate pushed his cheek out to imitate me. One girl saw it, and she jumped off the chair and fought him over it.”
Some of my biggest regrets in life stem from my young childhood and not always standing up for those under a bully’s thumb, and perhaps partly why I have sought to resolve some of that protracted guilt later in life working in war zones with human-interest work. Thus, if I can instill any quality in my own children, it is always to be a force to defend and support others when you know others are projecting a nasty streak.
Furthermore, Eddy’s story reminds me that it is never too late to be that line of protection for the less fortunate and most vulnerable in our society. Action on behalf of others, on matters beyond ourselves, need not be large-scale and grandiose. Small steps make a difference.
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Words that Never Leave You: "There was a lot of bullying, and I changed schools several times. But there were good people too..."