Pain Awareness Month: For Julian Phillips, chronic pain is an everyday fact of life
For Julian Phillips, chronic pain is an everyday fact of life. Nothing in Phillips’ active childhood years in England, where he was born, indicated that he would later be living a life of constant physical agony.
September is “Pain Awareness Month” in the United States. Phillips again this year brought the American Chronic Pain Association awareness program to the attention of the board of commissioners in Salisbury Township, where he resides. Township commissioners agreed to allow “Pain Awareness Month” signs to be placed in the township.
The second annual “Knock Out Pain 5K Run & 1 mile Roll or Stroll” was held Sept. 17 at Louise W. Moore Park, Country Club Road, Easton. Proceeds from the event benefited the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA).
Phillips’ world of hurt began with a minor injury to his right ring finger when a ball dislocated it during a water polo game in 1982. Only 24-years-old at the time, Phillips said, “I didn’t think too much of it and I left it for two weeks.” Still swollen and hurting, he had it examined in a hospital emergency room and a splint was placed on it. Phillips may have reinjured it when competing in a water polo tournament.
After several unsuccessful surgeries, Phillips’ finger was amputated in 1984.
Soon afterward, Phillips felt the same pain in his uninjured little finger. “I started to think it was in my head,” he said. Whenever he touched something cold, like silverware at mealtime, he would experience severe shooting pains. After he finally sought medical attention, a large growth was detected in that digit, which had shared the ulnar nerve with the now missing ring finger, and it, too, was amputated.
The inflammation moved up to his hand and wrist. Although there seemed to be no physical reason for it, the “phantom pain” for Phillips was real. A nerve expert diagnosed the affliction as Reflex Sympathetic Dystrophy (RSD) in 1990.
The medical condition was first discovered among casualties of the U.S. Civil War who were amputees. RSD, also know as Complex Regional Pain Syndrome (CRPS), “is a nerve disorder that usually occurs after a traumatic injury, surgery, sprain fracture, or period of immobilization,” according to the RSDSA. An estimated 200,000 in the U.S. suffer from CRPS.
Additional surgery, physical therapy, acupuncture, mirror and mental-visualization therapy for phantom pain were equally unsuccessful as the pain moved into Phillips’ right arm.
The Phillips family emigrated to the U.S. in the early 1990s so Julian could pursue a business opportunity in Florida. They became U.S. citizens. While in Florida, Phillips had a spinal column stimulator implanted in an attempt to manage his disease.
In 2010, after relocating to the Lehigh Valley, Phillips felt a jolt throughout his body when the implant’s wire broke. A new stimulator was then attached to his neck. The RSD flowed into his neck, left arm, and hand, causing him to reluctantly go on disability.
Phillips likens the sensations he feels in his arms and other extremities to a swarm of fire ants biting him under the skin. He finds himself scratching frantically to stop it, often drawing blood, but bringing no relief.
In January 2015, Phillips fell in a Bethlehem dog park while walking his German shepherd service dog. This caused the RSD to affect the rest of his body. Phillips’s daughter, Sarah O’Steen, started “Knock Out Pain” to raise awareness of the disease. The first fundraiser they organized was a boxing event.
In 2016, Phillips suffered a spinal cord compression that left him paralyzed and close to death. Surgery to remove the spinal column stimulator ended the paralysis, but Phillips still struggles with limited mobility and, despite the fentanyl patches and high doses of powerful painkillers, he still suffers excruciating pain. A neck brace worn 24-7 prevents his head from dropping to his right shoulder. Phillips relies on a motorized wheelchair because he can only walk unassisted for short distances. His service dog Caesar picks up items, opens doors and provides support for standing.
”Knock Out Pain” is also the name of a support group that Julian and his wife Geraldine have founded with others who deal with chronic pain.
“Pain builds character,” is Phillips’ motto.
Information: knockoutpainlv.com; 610-360-2776