Chronic pain is a cunning enemy, striking first at the body, then the mind. The injuries it inflicts can spread to entire families -- as illustrated by the story of one couple, Joel Sappell, senior metro projects editor at the Los Angeles Times, and his wife, free-lance writer Mona Gable.
Joel: For more than four years, pain has held my family and me hostage, often depriving us of life's simplest pleasures -- an afternoon in the park, an outing to the beach, a night on the town.
Our ordeal started mysteriously in the summer of 1994. One day I felt perfectly fit, the next I was throttled by a horrible burning sensation along the back of my head. It was diagnosed as occipital neuralgia, an inflammation of one of the scalp's sensory nerves.
Over the years, as I careened about for a cure, the pain transformed me into someone I didn't recognize or want to be. Once optimistic and extroverted, I now was self-absorbed and angry. Once endlessly energetic, I now longed for the escape of sleep. The ceaseless pain gradually diminished the closeness I shared with my wife and two young children.
There was a time when I asked myself each morning, "When will it go away?" As the months mounted, I came to believe the answer was frighteningly inescapable: "It never will." For me -- and probably thousands of other pain sufferers -- such hopelessness itself can become chronic.
Mona: The pain that has invaded our lives is crafty and treacherous. As I watch him struggle to maintain a "normal" life, my spirit aches for him. He is trying so hard to be OK, to hold on to faith that he will get better. But some days we're both so worn out we feel like giving up.
I, too, have been transformed. I am not as spontaneous, as carefree. I am more resentful and withdrawn, which makes me feel even worse. Our children also are victims, robbed of their father's full companionship. When he needs quiet, I take them to the mall or maybe a matinee, where we sit in the dark to forget.
Joel: After waiting weeks for an appointment, I am in the office of a renowned UCLA neurosurgeon, whom I have come to envision as my savior. Without even studying the MRIs and thick medical files I have brought, the doctor speaks: "If you came here looking for a magic bullet, you won't find it. I have one word for you: acceptance. ... Is there anything else?" Outside the medical center, I sob into a cellular phone, recounting for my wife the physician's verdict.
My sense of defeat was so complete because by then, after roughly two years of intractable pain, I had tried virtually everything: I had been to an internist, an orthopedist, two neurologists, physical therapists and even an herbalist. I was stuck by an acupuncturist three times a week for months. Then there were the psychologists, one who taught me biofeedback, the other self-hypnosis.
What's more, both before and long after my crushing trip to the UCLA doctor, I was a regular at a "pain clinic." There, I endured whopping -- and countless -- injections into my head and neck of a numbing anti-inflammatory solution. The shots, called nerve blocks, are standard treatment for occipital neuralgia. Although they weren't working for me, the diagnosis remained unchanged.
I believe the clinic's medical director genuinely cared about my well-being. We saw each other so often, we began swapping intimate details of our lives. His self-assuredness, if not his course of action, kept me from total despondency -- until he tried to "freeze" the problem nerve with an instrument called a cryoprobe. Accidentally, admittedly, he failed to deaden the entire nerve. The surviving branches were outraged, sending my pain to higher levels.
Throughout most of my confusing and depressing medical odyssey, I managed to struggle through work by clinging to the knowledge that relief would be waiting at home in a pill called Vicodin.
I became mentally and physically hooked -- a dependency that haunted me and, according to my pain-center doctor, may have been complicating my medical condition. With his strong backing, I stopped taking the pills, scared but determined.
For three days and nights, my body is strafed from within. Curled up on the couch, I alternately shiver and sweat, unable to eat, unable to move. Terrorized, I call several rehab centers, assured by each that my symptoms are typical and that better days are ahead. They advised me to drink Gatorade to prevent dehydration.
I emerge from the withdrawals vowing never to take another pill, but chronic pain has a way of eroding resolve.
Mona: As he searches desperately for an answer, I try not to think about it too much. The reason is simple: If I do, the stark evidence that nothing seems to be working will cause me to lose hope. I watch, give encouragement, offer advice, as he attends dozens of medical appointments.
The first time I am really aware of his deteriorating health is the day of his nerve freeze. When I walk into the room of an outpatient clinic and see him lying in bed -- his thin body draped in a gown, his eyes sad and dull -- I have to stop myself from crying out. He looks so fragile. I stroke his arm, talk to him soothingly and try not to let him see my alarm.
As every treatment he tries fails, he turns to the only answer that doctors, in their limited ability to heal, can prescribe -- the pills. Vicodin helps him function, but I can see its destructive power. He becomes even edgier, sharper with me, and I retreat.
Still, the week he decides to quit cold turkey, I am fraught with anxiety. He assures me he'll be fine. But when I see him descend into withdrawals, I am unprepared for the assault. As I watch his body revolt, I am scared to death, and I am helpless.
Joel: By this past August, I could no longer maintain the charade of invincibility at home and work. Even the smallest problems seemed like crises. I came to believe stress was the root of my trouble. My understanding bosses gave me a month off to test this self-diagnosis. Still, the burn persisted, frustrating not only me but also finally my pain-center doctor, who referred me to his mentor, a specialist in nerve pain.
After one visit, and yet another series of injections, this physician speculated that the occipital was not inflamed -- the diagnosis for years -- but compressed. He directed me to a top-flight neurosurgeon in Santa Barbara, Calif., Thomas Jones. On our first visit, Jones wondered if I had ever twisted my neck in a painful upward motion. Yes, I recalled, while surfing about a month before the big pain's onset. He promptly ordered another MRI.
When he called with the results, I was elated and later livid that I hadn't before heard these words: "I see something." He said the MRI revealed that an artery along the left side of my head was abnormally large, apparently putting pressure on the neighboring occipital nerve -- a genetic condition possibly aggravated by that day in the waves.
In the span of four recent months, Jones operated twice. During the first, he found the nerve tangled in thick tissue. "A mess," he called it, hoping that by setting it free, it would heal. But the injury, allowed to fester so long, was too severe. In January, he removed the nerve entirely. Now the pain will be replaced by numbness, a trade-off I would have jumped at long ago.
These days, with the help of fewer pills, I'm coping with sporadically severe pain from the operation itself, pain that Jones predicts will recede in the months ahead. Although he makes no guarantees, I am, once again, optimistic.
Joel and Mona: This ordeal taught us lessons that will stick for a lifetime. We have learned that when it comes to navigating the world of medicine, you must become educated about your illness, pursue every option and refuse to accept that there is no hope.
Our experience also has shown us the great healing power of reaching out and opening up to family and friends when the inevitable feelings of anguish and isolation arrive. Asking for help, we have come to deeply believe, is an act of strength, not weakness.
But perhaps most important, we have learned not to give up on each other. We have seen our relationship bend but not break. Today, we know we can weather any storm.