Two years ago, Creighton University art professor Rachel Mindrup received a Facebook message and a photograph that cut right to her heart.
The photo showed a Nepalese man, Ashok Shrestha, at an ice-cream parlor. He wore a beautifully patterned knit cap and a snug, green-and-gold checkered scarf. His right forearm rested on the table in front of him. His face was shrouded by a massive tumor, leaving only one eye visible over a distended nose and cheek.
The tumor was the effect of neurofibromatosis (NF), a genetic disease of the nervous system which manifests itself in many ways, both internal and external. And the Facebook message from Shrestha to Mindrup told a tortuous tale of how, in his native Nepal, Shrestha’s condition is a cause for public shaming and had rendered him an outcast — unemployed and unemployable, homeless, alone.
Mindrup was moved by the story and, as a painter of portraits working on an exhibition titled “Portrait of a Disorder: The Faces of Neurofibromatosis,” she was drawn to making Shrestha’s portrait from the photo.
“How could I not?” said Mindrup, whose son has also been diagnosed with NF. “Ashok’s story is just so moving and real. And what he’s done since then? It’s been so courageous. The man is really an inspiration to me and to a lot of people.”
When Mindrup’s painting was first displayed in the exhibition at Creighton in the fall of 2016, along with Shrestha’s story, it immediately garnered attention. People coming to see the show asked how they might help.
Over the next year, the artist Mindrup gradually found herself at the fore of a movement.
She learned it would take about $25,000 for an initial surgery to remove a portion of Shrestha’s facial tumor.
And when Shrestha reached out again through a Facebook message, Mindrup assured him that the money would come.
“I just said to him, ‘No worries, we will get the money,’” she recalled. “I said it like I already had $25,000 to burn. I didn’t think at all of the fact that we’d need to raise that money, that we did not yet have any kind of a plan to raise that money. I told my husband, Jeff — who is a little bit more of a realist and more logical in these situations — what I said and he just shook his head and very gently said, ‘You couldn’t have told him “We’d try to get the money,” could you?’ But that’s kind of how I roll. It’s a leap of faith. I’m glad I took it. And Jeff is, too.”
By January 2018, donations were already coming in through an online donation effort in the United Kingdom, but donations were slow from the U.S., mostly owing to the exchange of dollars for pounds.
Mary Borchert, a friend of Mindrup’s, swung into action. Borchert set up an online donation page, replete with Shrestha’s story and Mindrup’s painting, and the two friends broadcast the effort through social media.
Mindrup’s leap of faith paid off. Donations from around the world, with an especially generous outpouring by Creighton, allowed Shrestha to schedule the surgery in Chicago, and he was also able to swing over to Omaha for a quick trip to see his new friends and peek at the portrait that launched it all.
Then, in a moment, the hospital where Shrestha was scheduled to have the surgery reviewed his case, saw that it might be more complicated than originally believed, and doubled the cost of the procedure to $50,000.
“It was a gut-punch,” Mindrup said. “But what do you do? That’s just the reality of it. We went back to raising the money. That’s when you really saw Creighton swing into action. Every one of my colleagues in Fine and Performing Arts and all the College of Arts and Sciences stepped up. And the students, too. We got the money.”
Shrestha had the surgery in March and doctors were able to remove about 85 percent of the tumor. Plastic surgeons helped reconstruct one of his ears and opened a second nostril.
After the surgery, there was still one lingering bill to pay: from the anesthesiologist.
Learning this, Creighton drawing students immediately took up the cause. Two students, Leo Rosas Vickers and Monica Maxwell, helped organize a draw-a-thon on the Creighton mall. Bringing in local artists like Tom Kerr and Kristin Pluhacek, the event raised more than $2,000.
“Just selling pieces right off the easel,” Mindrup said. “It was an incredible, organic thing, like all of this has been. It wasn’t something planned. The students just saw Ashok in need and they went after it.”
The procedures have revealed new possibilities for Shrestha. “It’s very difficult being in Nepal and having NF,” he said during a return visit to Omaha and Creighton.
“People don’t know what it is and being in public is quite different. Since people don’t know what it is, they think it’s some kind of a curse for some sin. But in the U.S., in Chicago and Omaha, people have treated me just like any other person. I’m hoping this surgery will open some eyes to NF here and in Nepal.”
Shrestha will have a second surgery for which funds are presently being raised. Now that he’s back in Omaha for a time, Mindrup said she plans to sketch him and start work on a second painting.
When the second surgery — which includes further removal of the tumor and work to outfit Shrestha with a prosthetic eye — is completed, she plans to do a life-size portrait of Shrestha in a familiar pose. Greeting new people, he will hold the namaste gesture with the palms of his hands together, slightly bowed at the waist.
To think that this all began with a painting, Shrestha said he’s been reckoning the power of art to change lives, specifically his own.
“Art, in one way, is everywhere,” he said. “But in another way, it attracts your attention, speaks to you. You see it on a wall and it stops you. People go to museums to see art and have that feeling. They see art and are aware of its presence in their lives.
“I think that’s what Rachel has done for NF,” he continued. “She has stopped people and made them think about it. She has brought much recognition to NF and awareness to this condition. I think her art has brought so much awareness to NF that it deserves a wider audience. Her art, in general, deserves to be seen by more people.”