The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering
US: Aug 2011
When writer Melanie Thernstrom was 29 years old, she went vacationing on Nantucket with friends. Hoping to impress a possible boyfriend, she swam across a pond. The ensuing onslaught of severe pain down her neck, right shoulder, and arm sent her on a medical and literary odyssey resulting in The Pain Chronicles, a comprehensive investigation of chronic pain in its many manifestations.
On the cover of my paperback copy, People magazine burbles “Profound and engrossing, this exploration of pain is a pleasure.”
Profound and engrossing, yes, if not exactly a pleasure. Reading about the sufferings of others is never pleasant. Nor is it pleasant to be reminded that pain is the most effective method of torture, or learn that medical treatments intended to reduce pain may unwittingly increase it.
Full disclosure: I am a chronic pain patient. I have a rare, incurable collagen disorder causing, among many other amusing symptoms, joint degeneration and digestive abnormalities. ver the years I have seen countless medical practitioners, swallowed a pharmacy’s worth of medications and supplements, tried specialized diets, and had almost a dozen surgeries. While I cannot call myself “healthy”, I have health insurance and a compassionate doctor.
I feel my condition is as well-managed as an incurable orphan disease can be. According to Thernstrom, this lands me in a category of patients who are satisfied with their care even when, as in my case, treatment doesn’t completely eradicate suffering. The reason? We trust that our doctors not only believe us—a significant issue in chronic pain management—but are invested in our well-being.
In a book so capacious it nearly defies reviewing, a few themes reiterate themselves. Thernstrom is fascinated by the brain and its interaction with pain. Much of The Pain Chronicles, following scientific research trends, is devoted to studying the brain, brain chemistry, and how pain “works” in the body. Thernstrom describes the major types of pain and why some, particularly neuropathies, or nerve pain syndromes, are so intractable.
We learn of the homunculus, the brain’s internal “picture”, or map of the body, a distorted representation delineated not by actual physical proportions, but by levels of enervation and sensation. The face, lips, and hands are enormous compared to the distant feet and relatively senseless toes. Thernstrom describes nocioception, the neural apprehension and processing of “noxious stimuli”, hyperalgesia, wherein the brain overreacts to painful stimuli, and its wingman, allodynia, or pain response to normally innocuous stimuli. Nocioception, allodynia, depression, and gray matter atrophy are all symptoms of the chronic pain sufferer’s brain reorganizing itself in a manner Thernstrom likens to a tripped fire alarm that ceases to shut off, long after the fire has been extinguished and the fire trucks departed.
To her horror, Thernstrom learns Dr. A. Vania Apkarian, of Northwestern University, discovered that chronic pain atrophies the brain’s gray matter at an accelerated rate—five to 11 percent a year, compared to the half-percent atrophy of healthy aging individuals. “If my own brain had lost 1.3 cubic centimeters of its gray matter for each year I had pain, then it would have lost…what percent by now?...I couldn’t bear to complete the calculation.”
Thernstrom offers a comprehensive examination of pain treatment through history, often edging into horror novel territory. Common use of anesthesia during surgeries was an amazingly late development, even after the discovery of ether gas and the knowledge of opium, which dates to antiquity. Victorian surgeons were wary of “drowsy potions”, as anesthesia mimicked the outcome they strove to avoid: death. A screaming patient was preferable, making light work of figuring out whether or not the poor soul was alive.
Yet even in the earliest, most primitive days of ether gas use, doctors noticed that anesthetized patients often had better surgical outcomes, including higher survival rates. Thernstrom includes a long passage by the writer Fanny Burney, who was operated on by an eminent surgeon for a breast tumor. The surgeon, supposedly in an effort to calm her terror, refused to tell her when the surgery would take place. Nor did he use anesthesia. Burney’s recounting of the event rivals Stephen King’s short story “Survivor Type”, which so sickened me I had to read it in pieces.
Thernstrom also discusses medical treatment in non-Western countries, the successes—and failures—of hypnosis during surgery, and cultural misconceptions of pain, including several examples of racist medicine that sadly persist to the present day. Several pages are devoted to the female pain patient, from the Victorian “fragile creature” to contemporary women, who are often misbelieved by doctors, and carefully craft both appearance and verbal presentation in an effort to convincingly convey their suffering.
Religion and pain are inextricable; the center of Christianity literally hangs from nails. Ancient pain sufferers believed their woes indicated displeased gods, whom they sought to placate. Others continue to view pain as a test of devotion and happily set out to surmount it. Thernstrom, a non-believer, travels to India, where she witnesses rituals involving piercing the back, tongue, and cheeks with barbed hooks. Many of these pierced individuals attach religious items to the hooks and trek to a hilltop shrine. To her amazement, none appear to be in pain. Instead, they experience euphoria: pain is merely sensation in service to a larger emotional and spiritually resonant event. It’s not a moment intended for suffering, but for transcendent joy.
Similar results are found amongst deeply religious, church-going Americans, many of whom feel better able to endure significant pain than their more secular peers. Interestingly, Jewish religious adherence is not cited as a source of succor, perhaps because we prefer kvetching to prayer.
Thernstrom is unapologetically Western in her discussion of treatments. She sought Western medical treatment for her pain, and it’s Western medicine she studies, following pain specialists as they work with patients suffering from a range of problems. The purview of her discussion is the realm of medications, physical therapy, and surgery.
Her interviews with doctors and pain patients are wrenching. Many of the people she speaks with have lost everything—spouses, homes, jobs, recreational activities. They are desperately depressed, overwhelmed, suicidal. One woman went in for disk surgery and emerged a quadriplegic. Another, an athletic writer, was injured by a trainer at her gym, losing over a decade to crushing back pain. Another woman had a benign tumor removed from her ear. The surgeon mistakenly clipped a facial nerve finer than dental floss, consigning her to agonizing headaches until a pain specialist isolated the trouble, placing her on a simple drug regimen that brought relief. By then she had ended her marriage and left her fine home to be alone with her pain.
While medication and physical therapy have their successes, many are the pitfalls. Medications require constant tweaking to continue working. Physical therapy is time consuming, demanding patience and dedication if there is to be relief. Then there is the elephant on the couch: opiate narcotics.
Opiate treatment for chronic pain sufferers remains a fraught topic both within the medical community and the larger society, where an explosion of OxyContin addiction has negatively impacted an already negative perception of this most useful of treatments. Thernstrom writes:
“One source of pervasive confusion about opoids lies in the difference between dependence and addiction. Everyone who takes opiods becomes physically dependent on them… But withdrawal symptoms can generally be avoided through gradually tapering doses. People with the disease of addiction… find themselves unable to taper their drug usage… because they experience an overwhelming craving.”
Opiates don’t work for everyone, but for those of us do find them effective, they are lifesavers, restoring functionality and quality of life. But relief is mitigated by the knowledge that dosages need to be moved ever upward. I was immensely heartened to read that there is no “dosage ceiling” on opiates; one pain doctor went on national television with three elderly female patients to debunk the notion of the “drug-seeking” patient. These little old ladies were all taking opiates at dosages that would kill a healthy football player.
There are endless drug regimens for pain patients, narcotic and not, and finding a successful one can be immensely frustrating. Even when pain’s etiology is known, every body has a different “pain map”. Science is still unable to quantify pain tolerance and the reasons it varies. Nor can we fully understand perceptions of suffering.
Why does the train engineer, his balance impaired by Multiple Sclerosis, fall to the tracks and lose three limbs, only read Naomi Rachel Remen’s Kitchen Table Wisdom and feel sorry for the poor people in her book? How can he be so cheerful? Holly Wilson, the woman who emerged from surgery quadriplegic, is in constant pain. She refuses opiates, preferring to be “clear-headed.” She attributes her quality of life to her happy marriage and a good relationship with her doctor. Thernstrom encountered a young salesman who is disfigured and legally blind. A friend shot him in the face on a drunken hunting trip. The young man considered his accident a stroke of good fortune. “God had saved him, he said.” Yet others are destroyed by their pain; one man, injured in an accident, vigorously fought and won a lawsuit, with a large settlement. The money, of course, did not eradicate his pain. He killed himself.
It’s human to want an explanation, to assign wordless pain a narrative. The ways we do this are as infinitely complex and varied as we are. Strangely, though pain and the drive to understand it were the engine of this fine book, its weakest point is Thernstrom’s personal experience of suffering. Wwhat begins as an honest exploration, including a pain diary, trickles away, as if she grew tired of recounting the tale.
Thernstrom suffers from Cervical Spondylosis, a type of osteoarthritis affecting the neck, her right shoulder, and her right arm. She also has Stenosis, a narrowing of the spinal canal that can impinge on the spinal cord. The diagnosis is an alarming one. Stenosis can cause paralysis; Cervical spondylosis is degenerative and most commonly found in people over 55. Thernstrom was 33 when MRI films showed significant damage to her neck and right shoulder. The pain was crippling, the treatments often worse.
Thernstrom struggles to understand her pain at an intellectual level: it’s a disease, not her fault, not a punishment, a part of her existence, but not her. By her own admission, she is lackadaisical about her treatment regimen: anti-inflammatory medications, physical therapy (PT), and exercises. PT bores her. She skips her exercises, trading her expensive handbags and carry-alls for lighter bags. She dates a series of insensitive men before finding Michael, who once spotted portable heat wraps on sale at Costco and bought her an entire pallet—300 boxes. Reader, she (very wisely) married him.
Strangely, though, we never learn what happens. She writes that the worst of her pain recedes, though she is never pain-free. She mentions taking Tramadol, or Ultram, a potent pain reliever, but we’re never told how she eventually decides to deal with her pain, a disappointment given the vividness of her earlier writing. Thernstrom’s diagnoses and experience of pain acted as a touchstone throughout the text, and its dissipation is a disappointment.
There are as many ways of addressing pain as there are definitions of it. Advances in neurology, science, pain management, and imaging are all promising, but none can get at the elusive sense of self in all its aspects, including the self in pain. Perhaps the most we can hope for—those of us with chronic pain, and those whose agonies are more transient—is the best of all possible care modalities. A doctor who is willing to believe what isn’t writ on the body, an arsenal of drugs, a squadron of non-western practitioners for those responsive to this form of relief. We can hope for wider availability of scans, X-rays, imaging, and testing that offer loci for the pain. Most importantly, family, friends, and the medical community need to believe in the reality of pain and the necessity of ameliorating it. Thernstrom’s work is an important step in that direction.