Down among the beige houses of southern Johnson County, Kan., is a man who has lived anything but a beige life.
“I haven’t worn a pair of pants since 2013,” said Ken Babb, 51, a former executive engineer at IBM who is perhaps best known when he steps outside his home as the guy in the kilt.
Yet Babb, who wears the kilt often — without the long socks — is not of Scottish heritage.
He doesn’t play the bagpipe.
Nor does the blue tartan he wears have any personal significance for the native of Hutchinson, Kan., other than that his father-in-law recommended it.
Frankly, if Babb had his druthers, he happily would give up his kilt forever for the trousers he once wore as a globe-trotting executive.
“I can’t,” Babb said.
The reason goes to a story of twisting fate and twisting pain that involves a trip to China and an almost 14-hour return flight with a crushed and swollen right leg.
Later would come the therapies, the opioid prescription, the addiction and recovery, as well as a slew of doctors including one, William Corporon, who in April 2014 was gunned down along with his grandson, Reat Underwood, as part of a hate crime outside the Jewish Community Center in Overland Park, Kan. Terri LaManno, an occupational therapist visiting her mother at the Village Shalom care center nearby, also was killed that day.
“When he was killed,” Babb said of his doctor, “it was like losing a close ally.”
In the end, Babb wears a kilt because of a chronic nerve condition known as complex regional pain syndrome. The tenderest touch of fabric against his lower right leg will ignite waves of dizzying pain.
Whether he’s wearing a kilt or shorts, even the slightest breeze sparks pain. “The wind is my enemy always,” he said. “Any moving air hurts.”
“Imagine,” Babb said, “taking a nerve — an open, exposed nerve — and hitting it with a blowtorch. It is a deep, deep burning pain that you cannot get away from. And there is nothing you can do about it.”
Long pants? Long socks? They are the equivalent of stabbing the front of his right leg with a flaming butcher’s knife. It would hardly be appropriate to wear short pants in winter or to formal dinners or events, so he opted for the Scottish tartan.
“Last year,” said Babb, who at 6-foot-4 was a southpaw pitcher in college, “I wore my kilt to (the president’s suite at) NASCAR. You can’t imagine how hard it is to walk into a NASCAR event when you’re a big, burly guy wearing a kilt.”
The condition has spread to his hands and can leave them extremely hot or cold, so Babb sometimes wears battery-heated gloves.
He agreed to share his story not merely to explain his kilt; he has been doing that with friends, neighbors and curious strangers for years. Instead, it is part of a stepped-up effort, led in Kansas City by the Center for Practical Bioethics, to bring attention to the treatment of chronic pain and to change what is viewed as the negative narrative of those who suffer.
The National Center for Complementary and Integrative Health, part of the National Institutes of Health, estimates that more than 25 million adults suffer chronic pain.
“People who live with chronic pain have been terribly stigmatized and stereotyped,” said Myra Christopher, a former president of the center who is director of what is known as its PAINS Project. “The common perception is that they are weak in body or mind. Or that they are malingerers; they are faking to collect disability. Or, with the opioid epidemic, they have become seen as drug seekers, which they are not.”
Christopher said the PAINS Project’s goals include not only destigmatizing chronic pain sufferers and disassociating chronic pain from the opioid abuse epidemic, but also promoting approaches (beyond pain medications) to treat it.
“I’m talking about having clinics where people can go where they can get multidisciplinary care — where they can get their medications, get physical therapy, get occupational therapy, they can get acupuncture,” said physician Richard Payne, a neurologist and professor of medicine and divinity at Duke University who also holds a chair in ethics at the bioethics center.
“We don’t have that now. There are organizations that call themselves pain clinics where either they mostly just dispense medications or they give people nerve blocks. It is not coordinated. It is not comprehensive.”
Chronic pain, he said, should be classified not just as a symptom of other illnesses or injuries, but also as a distinct, chronic illness like diabetes that requires various treatments.
“No one would say that you treat diabetes with just insulin anymore,” Payne said. “Insulin is part of a total management process — (along with) changes in diet and activities and a whole range of things.”
Chronic pain strategies beyond pain medications, he said, need to be treated in the same fashion and, likewise, covered by insurers; many are not.
Babb, the married father of a daughter and stepdaughter, is eager for others to understand the nuanced truth of chronic pain and, equally important, to know that there are strategies aside from addictive pain medications to help manage pain as opposed to control it.
“I don’t use the word ‘control’ anymore,” Babb said.
Babb literally jumped into the reality of chronic pain in October 2012 while on a business trip in Beijing. He had recently been promoted to a top engineering position at IBM. Already, he had traveled to India and Australia.
“I was at the perfect place in my life,” he said, “where I had accomplished everything I wanted to accomplish. I loved my work. I loved working for IBM.”
A business conference over, he was headed to dinner one night with co-workers and clients and made his way to a subway platform. The platform and the subway car teemed with people. When a subway door opened, Babb leaped toward the open door.
His left foot landed in the car. His right did not. It plunged deep, the bottom of his right leg wrenching into the space between the subway car and platform. Bodies pressed in and out of the car. His leg was crushed against the platform.
“The train was not moving,” Babb recalled, “but the doors were starting to shut. … It was a terrible feeling.”
Just as the doors began to close, someone grabbed Babb by his collar, pulling him up onto the platform. His right leg swelled. Blood soaked his torn trousers. An athlete as well as a U.S. Navy veteran, Babb was not one to complain about pain. Scheduled to fly out of China in two days, he instead caught a flight the next day.
The flight lasted 13 1/2 hours. At an emergency room in Kansas City, doctors declared he had no broken bones. They thought all would heal.
“I thought, ‘I’ll be fine,’ ” Babb said. “Let the swelling go down. I thanked my lucky stars that I was in good shape.”
His leg tissue, in fact, did heal over the next several weeks. But the pain not only did not subside, it grew worse. Over time, Babb would see Corporon as well as 18 other physicians. He was still working and traveling, unsure what was wrong. The mere act of putting on pants was excruciating.
“Every day the pain would get worse — horrible,” Babb said. “By the end of the day, I wanted to crawl under a rock.”
Finally, six months after his injury, he was diagnosed with complex regional pain syndrome, or CRPS. That led to a series of pain injections, none of which worked. One nicked a nerve connected to his groin that landed him writhing in the emergency room. Babb remembers pleading, “Please cut my leg off! I can’t take this anymore!”
It was during that stay that the pain spread to his hands and when, for the first time, he was put on a high-dose opioid, the narcotic Fentanyl.
“They released me from the hospital and I was a freaking zombie,” Babb recalled. “Being on that much Fentanyl is like not being alive. And there’s something you need to know about pain medication: It doesn’t help the pain at all. It helps you not care about that pain.”
He couldn’t drive. He barely ate. He couldn’t function at the level he knew was necessary to do the job he’d worked his entire adult life to achieve. He chose to leave his work, exacting a deep blow to his sense of self-worth.
“I just had to admit that there was nothing I could do on that much pain medication,” Babb said.
His body became physically dependent. It happened gradually over about six months. He didn’t become a markedly different person or an addicted junkie. But opioids are strong, requiring chemical withdrawal.
“The difference is that you’re just not present,” he said of his time on the medication. “You’re really aren’t a fully functioning person. Your mind is numb. Your senses are numb. You feel sick all the time.”
The pain was bad enough that Babb knew he needed to find a different way, which led him to California and a program run by HELP Pain Medical Network.
The network treats chronic pain with multidisciplinary approaches, as opposed to just through pain medications. It was founded by anesthesiologist William Brose, who is an adjunct professor in pain medicine at Stanford University and who received his medical degree from the University of Kansas.
Babb wasn’t completely off pain medication when he came back, but he was on a greatly reduced dose. He now takes no opioids.
The kilt was a gift from his wife for Babb’s 50th birthday in October 2015.
Pain? He is in tons. But, Babb said, he’s learned to manage as opposed to control it. He eases himself into baths rather than face the pain from pelting shower water, or encircles his leg with a plastic sheet.
When pain strikes, he uses biofeedback and “mindful meditation” techniques.
“Let’s say my dogs come in and one of them nails my leg with a passing brush of their tail,” he said. “The pain will become so overwhelming, so bad, I will go down into a dark quiet place in my house, in my basement. I listen to Spotify, a mindful meditation that is about 15 minutes long, I focus my attention down an elevator of colors. Basically, at the end of it, I am better than I was.”
Sleeping, the touch of sheets on his leg, remains a horror, he said. “Nighttime is the closest I get to not to wanting to be alive,” he said. Sleep requires a sleep aid. Pain can hit from unexpected corners, like a visit to see Fourth of July fireworks.
“When the first boom went off,” Babb recalled, “and the sound wave hit my leg, I went crawling for cover.”
Babb said his experience with chronic pain has given him an empathetic perspective he did not have before. For the record, although he espouses a multidisciplinary approach to treating chronic pain, he also is not against the use of pain medications for those who need them. He knows that many do.
He knows what it is like to be on the opposite side of negative judgment, being stigmatized, eyed at the pharmacy and constantly questioned.
“When you take pain medication,” he said, “it doesn’t matter who you are. Everyone is questioning you all the time. It is a very dehumanizing treatment. You’re treated a druggie with a drug-seeking habit. That’s all you are.”
Seen as the guy in the kilt, Babb knows that it can become all too easy to misjudge what’s on the surface. Millions of people are in pain that goes unnoticed by others, he said.
“It can be hard to accept what you can’t see,” Babb said. “I have learned not to be so dismissive of other people I see who are in pain.”