Pain stalks RIT professor

In the kitchen of Clifford Wun's home in Brighton, some cabinets lack doors and a new dishwasher sits uninstalled. In the living room, not far from where he spends most days lying on the couch, are baskets filled with laundry, and the front door frame has been only partially painted.

"It's in limbo," he says, "just stuck in a state that's just horrible."

He's talking about his life, not his house. An art professor at Rochester Institute of Technology since 1999, his physical battle is hourly, not daily. His muscle cramping and pain is acute and felt throughout his 48-year-old body. As it intensifies, it's debilitating. It has crippled his life.

But here's the worst part: Clifford Wun doesn't know what's wrong with him.

After more than two years of diagnosis, including 26 vials of blood, a full-body MRI and brain and spinal scans last spring at the Johns Hopkins School of Medicine, his ailments remain a mystery. The initial diagnosis was Stiff Person Syndrome, a rare autoimmune disease that's often considered a neurological disorder. It includes muscle spasms and rigidity brought on by stress or anxiety.

But blood tests don't definitively support that. "Nobody really knows exactly what it is," Wun says. "So I'm totally afraid. It's like having a migraine over your whole body or charlie horse that won't go away."

May 15, 2013 — Facebook post.

"I have wept alone in the dark, but I still laugh with my children and friends, just not often enough. … It's been almost 2 years and I don't remember a life without pain. I feel hopeful and hopeless at the same time."

Some people want to suffer privately. Not Wun, who longtime RIT colleague Eileen Bushnell says was "beloved" by his students. Wun isn't looking for sympathy, though — just answers.

"I'm hoping somebody sees this, has dealt with this before, dealt with symptoms like this, and can contact me and say, 'Hey, you know what? I know exactly what's going on with you,' " Wun says.

Too much physical activity — even a lot of walking — can trigger spasms in his neck, back, shoulders or legs. The muscles tighten, then turn into what feel like knots or even "rock," Wun says. As a result, he hasn't been able to see his 9-year-old twin sons, Aidan and Ronan, as often as he'd like. Wun and his wife, Lori, separated in December. He has had to cancel or cut short visits with the boys because his pain is so intense. At times, he'll end up in the fetal position on that couch, waiting for the spasms to pass.

The baseball glove he bought two years ago hasn't been used. "The boys are old enough to play catch now, but I haven't been able to," he says. "It's too difficult."

It all started in August 2011. An accomplished painter who has sold pieces for $10,000-plus, Wun pulled an all-nighter at home painting, as he often did. By morning, his trapezius and rhomboid muscles were cramping badly. He thought he'd just overdone it.

Not long after, a five-hour drive to see his family in Springfield, Mass., caused more severe pain all weekend. In October, he fell in a hallway at RIT. The leg spasms were so bad, he was in tears. Doctors thought it was simply cramping and he needed to take better care of himself. No more all-nighters, a better diet.

He stopped working out as much when the twins were born in 2004, but he wasn't out of shape. Trained in martial arts, he stayed somewhat fit. That Thanksgiving, his shoulder hurt so badly he asked Ronan to look at it. "It looks like your (clavicle) bone is popping out," Wun recalls his then 7-year-old son saying.

By then, teaching all day was becoming tough. He pressed on. "He was devoted to his students," Bushnell says.

August 2012 — Facebook post

"(My sons Aidan and Ronan) have been going to sports camp. Lori gave them money for treats from the vending machines at lunch. Aidan told me, 'I threw my money into the river and made a wish you would get better Dad.'"

Wun last taught in March 2012. He went on short-term disability, then long-term started last December. He had carved out a reputation as one of those cool professors who doesn't fit the academia mold. He'd put in 14-hour days — teaching, meetings with colleagues, meetings with students — and forget to stop to eat because he was so busy.

"I'd eat 10 tacos on my way home at midnight because I was so hungry," the quick-witted Wun remembers. "My trips to Taco Bell became legendary."

So did some of the tales about his pre-RIT life that he shared with students.

"His stories," recalls Nick Brandreth, 27, who showed up at RIT to study photography but got hooked on drawing and art because of Wun, "were the best.

"Sometimes they're a little drawn out, just crazy, and people get a little frustrated. He might take an hour, but when he gets to the point, it makes so much sense."

Stories about growing up in Springfield, where he grew up as a good high school wrestler. Stories about getting into the Rhode Island School of Design almost on a whim because he didn't know what he wanted to do before discovering a gift for drawing. Stories about needing money for school and bartending in New York City at Studio 54, where he met as many interesting characters sitting on stools as he did in back rooms.

All of that was on the table in lectures.

"He's truly beloved by his students and the work they produced was phenomenal," says Bushnell, an associate professor and former department chair of RIT's School of Photographic Arts and Sciences who calls Wun a colleague and friend.

She was on the committee that hired him as an associate professor in the College of Imaging Arts and Sciences in 1999. That followed a few other teaching stints after he earned a master's in fine arts from the Maryland Institute College of Art in 1994.

"He teaches in a very deep, sort of intuitive way — really like no one else I've had," says Rose Haserodt, 20, a Cleveland Institute of Art junior who spent her first two years at RIT. "I think the biggest thing I learned from him was how the artist has to become part of their work. He really changed my life in terms of art work and how I am as a person."

Wun was deep, and funny. He gave Brandreth, who is from Emerson, N.J., an F-minus on his first drawing assignment, then asked him how he felt about it. "I told him I wanted to punch him in the face," Brandreth says, recalling the moment with a laugh. "I didn't even know you could give (an F-minus). Cliff has a way about him."

Even though Haserodt, who took two of Wun's freshman drawing classes, received a scholarship to the Cleveland Institute a couple years ago, she chose to stay at RIT as a sophomore because there was a chance Wun would return to teach last year. That didn't happen.

June 2012 — Facebook post.

Everything seems so hard and painful right now. Walking a couple of blocks with my sons sent me into intense cramping and pain a few weeks ago. The Neurologist thinks it may be "Stiff Person Syndrome"

A mostly self-taught carpenter and mechanic, Wun was renovating his three-bedroom ranch home when his physical problems started. He likes muscle cars, too, and owns a 2007 Shelby GT Mustang. As his conditioned worsened, he, like his doctors, started looking for answers.

Via the Internet, Wun exchanged emails with a woman in Brazil with similar symptoms. She has Stiff Person Syndrome (SPS), he says. But results he received from Johns Hopkins last spring were inconclusive, Wun says, for SPS. He also was tested for neuromyotonia, a nerve disorder, and Hashimoto's disease, which affects the thyroid gland. The thyroid produces hormones that are critical for many of the body's activities.

Nothing was definitive, Wun says.

Wun wonders if he pushed his body too hard. He says he never used drugs. He wonders if he breathed in too much of the heavy metals or chemicals from painting and sanding. An acquaintance helped get his case in front of students and doctors at Johns Hopkins, one of the top research hospitals in the country.

As the months roll on, Wun does his best to manage the symptoms, but it's not easy. He once had a "choking fit" at Wegmans. If he's driving and feels spasms coming on, he'll pull over. When muscles tense up, he uses his hand to press on them. Mysteriously in May, his left bicep all but collapsed in a matter of days. He couldn't use his arm for a couple weeks.

It's a delicate balancing act. If he does too much it can trigger symptoms, and within the last month he stopped taking medications because he has grown tired of the "fogginess" and malaise they cause. He recently has started acupuncture, which has helped, and is seeing a holistic doctor.

His days are filled with waiting for the next doctor's appointment or the next spasm. "I feel like a piece of veal," Wun says. "All I do is lay around."

Former students held a painting party one day, gathering at his house to do some work for him. "To be in the position of needing (help) from other people has been tough," Wun says.

Wun wants to get his house on the market. He knows he'll take a loss. He wants to re-engage with RIT, his students and colleagues, and return to painting. The abstract expression pieces he finished shortly before this illness took over, he estimates could sell for $50,000 or more at the right art shows.

He hopes to be more of a part of his son's lives. That helps get him out of bed every morning.

"Sometimes it's utter despair. For the most part, I try to think about my kids and what the future could hold. … I look at this as a transitional period maybe where I got to rethink a lot of stuff and learn a lesson from this."

JDIVERON@DemocratandChronicle.com

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