Living with Neurofibromatosis
Ed Port of Austintown lives with Neurofibromatosis
Ed Port of Austintown who suffers from a rare condition is hoping to raise funds for corrective surgery.
By Denise Dick
AUSTINTOWN — Ed Port’s facial deformity has limited his ability to secure a job, hampered him socially and affected his hearing and sight.
Port was diagnosed with neurofibromatosis type 2, which causes a growing tumor in his face, when he was 3 or 4.
“Between the ages of 7 and 19, I had 18 to 21 surgeries,” Port, 38, said.
Growth of the tumor has obscured his vision in his left eye, damaged his hearing and led to the removal of part of his jawbone. His health insurance considers the series of surgeries required to correct the problem cosmetic, however, and won’t cover them, Port said.
“What I need to find is a doctor who is capable of doing it, who is willing to do it,” Port said.
He also needs the money to pay for it.
He’s not sure of the cost, but it’s expected to exceed $60,000.
Michael Murphy, 33, a 1993 Boardman High School graduate, is using his artistry to help.
Murphy, an assistant professor at Georgia College and State University in Milledgeville, Ga., has created several portraits of President-elect Barack Obama in various media. One that’s available through Monday morning on eBay uses the shadows cast by 6,400 nails to form the incoming 44th U.S. president’s likeness.
Proceeds from the sale will go to Port.
A video about Port, as well as the portrait and more of Murphy’s work, may be seen at Murphy’s Web site, www.mmike.com.
Without the surgeries, Port’s tumor will continue to grow. He doesn’t know at what rate or how much damage it will cause.
“Only God knows,” he said.
Murphy and Port met through a mutual friend about two years ago.
Murphy said he’s been telling Port’s story for about a year and a half, after Port came to his studio asking him to create a video portrait of him to submit to “Extreme Makeover,” a television show that was canceled a few years ago.
“It suddenly occurred to me the opportunity to create a situation that, if realized, would be a perfect metaphor for the principles behind Obama’s campaign,” Murphy said. “It’s all about hope, change and making the world a better place. There are so many wealthy individuals out there. Someone can afford to help Ed.”
In the video, Port, who grew up in Andover, Ohio, says that when he was 26, his left eye, now mostly obscured, was still visible.
Socially, his life has been difficult. People often don’t take the time to know Port for himself, and young children are afraid of him.
“They think I’m a monster,” he said. “That upsets me.”
Surgery would help make him more acceptable to society, Port said in the video.
He was engaged to a “kind, sweet-hearted girl for awhile,” but she ended it.
“I think she was worried that if I couldn’t get the surgery, I would die,” Port said. “She was afraid that I would make her a young widow.”
The breakup happened two years ago, and he hasn’t really dated anyone since.
Port has a steady job now at a local call center, but many of his job applications have been rejected over the years. He attributes that to his deformity.
But Port says he has a strong faith in God, and he doesn’t feel sorry for himself. He has a small group of close friends, a job and his family remains in Ashtabula County.
Murphy, meanwhile, is not a political junkie — despite his choice of Obama as a subject.
The artist said he always considered politics kind of an illusion, with elections set up to give the American people the illusion that they live in a democracy. The Electoral College determines who wins a presidential election.
“I started off making a portrait of Barack Obama, and I listened to his speeches while I worked,” Murphy said.
He liked the then-candidate’s message about hope and change, and he chose to work with nails for a reason.
“It’s a very aggressive material on purpose,” Murphy said. “You have to exert great force to really make an impact that will get people to embrace change.”
Murphy was moved by the message and its effect on others. He voted for Obama in November, the first time he voted in a presidential election.
The nail portrait, started last January, took him about four months to complete. It’s available for sale on eBay.
Murphy earned his bachelor of fine arts from Kent State University and a master’s of fine arts from the Art Institute of Chicago.
He has also created Obama portraits in pastel and a sculpture of high tension wire. He doesn’t reveal his precise methods for creating art.
“I combine traditional media and digital media and come up with a new alternative,” he said.
While he lists both glass and light as his favorite media, Murphy says he uses whatever he can get his hands on.
“When you’re molding clay, you’re not actually molding clay, you’re molding light and shadow,” Murphy said.
Much of his work looks much different depending on the viewer’s angle.
His depictions of many people appear abstract up close but become clearer from a distance.
“I like to say that it straddles the border between abstract and realism,” he said.