Couple struggles to come to terms with chronic pain

Chronic pain is experienced by approximately one in five (or 1.5 billion) people, but the exact cause and effective treatment remain somewhat of a mystery to modern medical practitioners.

In their memoir The Pain Project, Kara Stanley and husband Simon Paradis track their progress over a one-year period toward better understanding and alleviating Simon’s chronic pain.

Stanley is the author of Fallen: A Trauma, a Marriage, and the Transformative Power of Music and the novel Ghost Warning. Paradis is a musician who was severely injured in a fall in 2008. After a long rehabilitation period, he returned to teaching and performing. The couple live on B.C.’s Sunshine Coast.

Pain that strikes violently and suddenly is one of the lasting conditions of Paradis’ accident. It is so severe that he admits to Stanley his reoccurring belief that he wasn’t meant to have lived. “It makes me think that it’s nature’s way of saying I should never have survived my injuries.”

His legs remain paralyzed, yet he suffers from ghost pain that jolts him awake in the night. Stanley recounts how initially the couple was optimistic about his ability to regain his former strength, but a bout with necrotizing fasciitis and the lengthy antibiotic regime was a huge setback. Paradis’ doctor increased his daily hydromorphone dose in an attempt to ease his pain.

“But Simon’s pain was chronic. It was something he lived with constantly, something that altered the microscopic structures of his body, changing him from the inside out,” Stanley writes. “Simon’s mysterious agony transported him to a no-man’s-land, a kind of living limbo, where there was neither a specific injury to heal nor a place of safety to which he could retreat.”

Marking the 10th anniversary of his accident, Stanley and Paradis agreed that they needed to change their daily activities to try to gain some control over the pain negatively impacting their world. They launched a personal experiment they named the Tackling Pain project.

Stanley includes information on the medical classifications of bodily pain, with neuroplastic or nociplastic pain resulting when the nervous system becomes sensitized after a protracted state of pain. It’s hard to modify because it involves both a body part and the nervous system.

She also recounts the many factors affecting a person’s pain intensity, duration and distress. These include: physical and mental health at the time of injury; attitudes, memories and beliefs about injury and pain; the presence or absence of a supportive personal network; and whether or not the injury impacts your financial stability. Research shows that when being tested for pain perception, external factors such as the test being accompanied by a bad smell or conducted by someone wearing a white coat also affect the results.

Although pain’s cause and effective treatments can’t be totally understood, Stanley and Paradis come up with some concrete steps they took during their year-long experiment. While Stanley had kept a diary for years, Paradis also agreed to start keeping a journal. They decided to hold a weekly check-in session to stay on track.

Developing a long-term plan, they committed to the idea that a single solution to pain control doesn’t exist. Rather, they sought medical help to fight Paradis’ reoccurring urinary tract infections and confronted pain, but stopped focusing on stopping pain. They later set another goal of reducing Paradis’ daily hydromorphone dose.

Paradis tried a biofeedback device, offering an interactive meditation program and a pillow playing soothing music while gently vibrating. His doctor increased his antibiotic regime so his body could better combat infections. Stanley used her experience in gradually overcoming chronic lower back pain through pilates to persuade Paradis to return to using their swim-spa and learn qigong. They installed a peppermint oil diffuser in their bedroom to improve their sleep. Driving to a nearby park, they walk their dog amid the trees and enjoy “forest bathing.” Paradis also tried medicinal marijuana products.

The Pain Project describes the couple’s personal journey but, thanks to Stanley’s extensive research, it also provides insights into how medical science is still struggling to address and treat chronic pain.

Andrea Geary is a freelance writer and editor in Winnipeg.