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‘Someone can afford to help Ed’
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Living with Neurofibromatosis -
Ed Port of Austintown lives with Neurofibromatosis
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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.
denise_dick@vindy.com
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Comments
I had seen Ed around town for many years..and I finally had the please of meeting him at the Call center he works at. Yes many people look at him and all they see is the outside. But when I look at anyone I only see what is in the inside. Because wether it be GOOD or EVIL it all comes from within...not from any outside looks.
My oldest daughter has several disabilities and so I know how cruel people can be. She has had a tough time in life and is now living on her own, which is a good thing in a way. But she will always need help with things in her life..and yes...even at the age of 23 she is still looked at differently . But I know what is in the inside and that is a fantastic "Little" girl..she will always be my little girl.
So Ed I hope someone out there will help...I will not put my name in here but I know you would know who I am if you saw me. A little hint...you came into a Resturant I work at on the West side of Youngstown. Lets just say...it is a one of a kind resturant in our area.
But just remember this Ed...no matter what you look like on the outside,,true beauty comes within..and if someone has to be rude, or disrespectful because of the way someone looks then they are not worth having as a friend. Hope to hear more about u in the coming months and GOD BLESS YOU and your family.
Here's the other article:
http://www.vindy.com/news/2008/nov/22...
video:
http://www.vindy.com/videos/2008/nov/...
Its amazing that we have to treat illegal aleins for free but this guy can't get the medical help he needs. Do you see something wrong with this picture?
Is this article about the gentleman with the tumor, Obama, or what type of art Murphy creates? Horribly written with no central idea. Bush-league.
In any event, Mr. Port most certainly deserves the opportunity to have the proper surgery at an affordable price. The guy goes to work full time, and pays his taxes. He is not a criminal and seems like an amicable fellow. Perhaps he might seek another insurance carrier, however, that may be very difficult. I cannot fathom any of his surgeries were purely cosmetic.
I hope he gets the money for the surgery and any future surgeries needed. This health issue was thrust upon him, he had no choice and no preventative measure could have been taken.
As alluded to by Pauly, we give FREE health care to ILLEGAL immigrants for votes and cheap labor and this AMERICAN CITIZEN cannot reap the benefits of a country he supports everyday. Sickening.
DoctorGonzo... While I truly appreciate your compassion and understanding of Ed Port's situation and needs, I have to take issue with your opinion that the article was poorly written!
Personally, I thought the article was very well written by the Vindicator staff writer, Dick Dennis. Further you should know that the artist, Mike Murphy, chose to divert national attention he had recently gained on CNN for his unique Obama art work to once again try to help Mr. Port seek the medical care he desperately needs! Mr. Murphy had attempted to bring attention to Mr. Port's situation 2 years ago, without success, and saw his own recent nation recognition as an artist to once again try to help Mr. Port.
I personally was the one who brought to the Vindicator's attention, along with other local newspapers, Mr. Murphy's recent national CNN recognition for his Obama art work, as a former resident of the area who should be appropriately recognized. Aside from feeling the need to bring attention to someone who grew up in this area, I felt those who may have know Mr. Murphy should be aware of the national attention and recognition he has gained for his Obama art work. Especially considering the support President-Elect Obama gained in this area and the attention now being given to his transition into becoming our next President.
I commend the Vindicator for being the "only" local newspaper to run a story regarding Mr. Mruphy's art work; however, I commend Mike Murphy even more for obviously turning his Vindicator interview away from himself and directing the attention to Mr. Port's needs!
On this Thanksgiving Day, we should all think of those less fortunate than ourselves and be thankful for people like Mike Murphy, who think of the needs of others instead of their own personal gains!
I WOULD BE HAPPY TO PARTICIPATE IN A BENEFIT CONCERT FOR MR. PORT.
JNBillock you are missing Gonzo's point. He is not questioning Mr. Murphy or his ability. The story is headlining Mr Port yet barely 20% of the article is about him. The balance of the article, while tying in the subject, is devoted to Murphy and his accomplishments. At best this should have been split into a follow-up or partner story, not a confusion of subects. Mr. Dennis could easily have detailed the injustice of the insurance companies claiming this to be "cosmetic" as the body of the article.
The true shame is that the insurance decision was most likely determined by someone with no medical degree, worried about the bottom line profitability of such a procedure.
I suggest Mr. Port contact University medical staffs across the country and abroad. With any luck someone will either a) see an opportunity to profit by way of publishings and/or notoriety, or b) Truly have compasion for this man and do the surgery as a gesture of good will.
I hate the thoughts of universal healthcare, but this case would make me hate it just a little less.
God speed Mr. Port and good luck!
Ed. have you consulted with several plaintiff trial attorneys? just because your health insurance company thinks your condition is "cosmetic" does not necessarily end the argument. If not I urge you to get a referral to a good trial attorney who may represent you for free or for a contingent fee.