Julian Phillips
Battling chronic pain for over 30 years. In his early 20s, Julian was athletic and active. He enjoyed weekly water polo games with friends in his hometown of London, and had even hiked the Grand Canyon by himself in 1979 on a trip to the States.
However, following the birth of his first of four children in 1982, everything changed. As Julian was defending the goal during a water polo match, his right ring finger snapped backward. Thinking he dislocated his finger, he secured it with a strap. Yet two weeks later his hand still had not healed.
Julian sought medical help. His doctor performed numerous injections, which did not ease the pain. He then underwent several surgeries, including one to remove his ulna nerve and blood vessels from his ring finger. This did not help either. With no other options and a fierce burning pain, Julian opted for amputation.
Four months after amputating his right ring finger, he began experiencing tingling sensations in his little finger. He believed he was imagining the discomfort since he knew his doctor had removed all the sensory nerves, and he tried to move forward with life.
As the agony worsened, his wife Geraldine coerced him into visiting another doctor. It was after a thorough exam of his reflexes that he finally discovered he had developed the neurological and chronic pain disorder, reflex sympathetic dystrophy (RSD). RSD causes the nerves in the body to misfire sending constant pain signals to the brain. With a new diagnosis, Julian and Geraldine focused on finding treatments that would bring him relief. He underwent one to two surgeries a year for nearly a decade, but it never lessened his pain. It took all his will just to wake up, work a full day and then return home.
Nothing was helping Julian, and England’s cold and stormy weather exacerbated his pain. He and Geraldine decided to move their family to Florida. The move seemed to be the answer. The children adjusted well and Julian’s pain levels lessened. Unfortunately, after thirteen years in the US Julian encountered obstacles at work. He had to operate machines, and the repetitive, labor-intensive work worsened his RSD symptoms of tingling, burning, hypersensitivity and uncontrollable spasms.
By 2003, he needed a more aggressive medical approach. He had a spinal cord stimulator implanted (SCS) and continued to work the machines. Everything seemed to be better for a while. Julian enjoyed his job and was coping well.
Yet four years later, the battery for the spinal cord stimulator needed replacing. Since Julian was having such difficulty with the placement of the first battery, his doctors moved it below his right ribs. Unfortunately, the accumulating scar tissue along each surgical site irritated him, as did the original battery placement site.
Things continued to worsen when Julian injured himself at work in 2009. While using one of the company’s machines, he turned and twisted his arms. Instantly, a huge blast of electricity shot through his body. He could no longer feel the positive effects of the SCS. He had to turn to medications to help control his pain.
In January 2010, a new spinal cord stimulator was implanted. The paddle version was known for its more stable anchors around the leads. The procedure did not produce relief. Now his hypersensitivity affected his neck, shoulders and abdomen. The slightest touch or breeze was excruciating for Julian. In order to be semi-comfortable, Julian could not have anything touch his right arm or neck, so his wife removed the right sleeve from his sweaters and shirts and found tight upper-body undergarments that had more support.
By mid 2010, he finally recognized that work was making his pain worse. He knew he needed to put his health first and could not keep going at this pace. Julian worked his last day in August 2010. While Julian may not be working machines anymore, he hasn’t given up on life. Taking online courses and using voice-activated software on his computer, Julian went back to school, receiving his master’s degree in business administration. He’s proud that he accomplished a great achievement while dealing with pain.
He feels he was able to reach this goal because of how he chooses to look at his pain. Julian has learned to view his pain as an endurance activity. Following the same method he once used as a hiker, he sets shorter goals for himself that ultimately lead to his long-term goal.
Julian has come to recognize the importance of truly understanding one’s sorrow and being patient, supportive and available to those in need. Pain also taught Julian the value of visiting a counselor. He realized he needed professional help and has been working on accepting his disease.
An organization that has brought him much support is the U.S. Pain Foundation. Through his work as an ambassador Julian has been able to turn his struggle into something positive. He sees he can help others facing similar situations. ButYouDontLookSick.com has been another resourceful site for Julian. “The Spoon Theory,” written by the site’s founder, Christine Miserandino, changed his outlook.
Yet what motivates and strengthens Julian during the darkest days is his loving family and his incredible wife. Julian believes his wife deserves the credit. “Geraldine is a trooper. She has never complained and always says, ‘whatever you need, we will do. I just want you—nothing else.’ She made the ultimate sacrifice, and I am so lucky to have her.”
As a young kid, Julian lived by the words, “pain builds character.” He never realized how powerful that mantra would be. The suffering could defeat him or he could rise above it. Julian did the latter. “Pain has led me on a journey, and I like where I am today. While I suffer every day, I know I can make a difference. I just want to become a strong voice and bring visibility to an invisible cause. I am not giving up.”
Resources:
ButYouDontLookSick.com