When Pain Invades a Family

Chronic pain is a cunning enemy, striking first at the body and then, in time, 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 Times, and his wife, freelance 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 left side of the back of my head. It was diagnosed--by too many doctors for too long--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. Increasingly, I felt like a distant relative in my home, the ceaseless pain gradually diminishing 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, undercutting the remarkable healing potency of the mind.

In the past, in healthier days, I would offer quick words of encouragement to those who complained of the misery of migraines, bad backs or other infirmities. Looking back, my words were probably more a gesture of courtesy than compassion. Truth be told, you cannot truly understand the psychic turmoil, the loneliness, of chronic pain until you’ve experienced it.

*

Mona: When we met, he was a long-distance runner. I was a casual tennis player. He loved camping off-road in the desert. I preferred comfy hotels and the rugged hills of San Francisco. The first thing I noticed about him were his amazing eyes, the color of a tropical sea.

“Hmmmm,” I thought.

So we fell in love, got married and tried to make each other happy. When I learned I was carrying our son, we arranged to meet after work at the Beverly Center. I got there first, feeling like grace had finally tapped me on the shoulder. When he strolled up, there were tears in his eyes. It all seems so long ago, this easy capacity for joy.

The pain that has invaded our lives is crafty and treacherous. Just when I think it has grown tired of Joel, given him space to be, it dances around like a boxer, then strikes a blow to his head. 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 and that we will one day dance in the moonlight again. 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. Perhaps if I keep the kids out long enough, I think, the pain will have eased by the time we get home. It doesn’t. The years pass, the children grow.

I come from a family of “health issues.” My mother was brain-damaged and my childhood was consumed with quietly watching her, willing her not to be crazy. My father, a beloved physician, had one surgery after another and was ruined by gin and pills. It seems so unfair, this imposition of another illness in my life. And we’re so young, only in our 40s. Our hearts are broken.

*

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, on a secluded bench, I sob into a cellular phone, recounting for my wife the physician’s verdict, which feels like a death sentence--with no appeals left.

My sense of defeat was so complete because by then, after roughly two years of intractable pain, I had tried virtually everything that conventional and alternative medicine had to offer. I had been to an internist, an orthopedist and two neurologists. I was stuck by an acupuncturist three times a week for months. Physical therapists dug their hands into my body, and an herbalist had me drinking a nasty brew of twigs and roots. 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 Torrance “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, which became a kind of nightly martini for me. This ritual helped me survive four of the most grueling yet rewarding years of my career, which included overseeing coverage of the O.J. Simpson trial as city editor and later shepherding a number of major series into the paper as Metro’s projects editor.

But, like many sufferers who use the addictive painkiller to extinguish their anguish, 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 plenty of Gatorade to prevent dehydration.

I emerge from the withdrawals, vowing never to take another one of the pills, relying only on the healing powers of my body. 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. I feel like we’re in Lamaze again, only this time I’m the coach and the pain doesn’t lead to a bundle of joy.

In a strange way, the nature of the pain makes it easy to deny his decline. It is not like a head wound, or a form of cancer, where the damage is visible, or its ravages on the body are familiar. For the most part, he looks the same and behaves in old ways. He takes long, strenuous bike rides or swims countless laps.

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.

Over the years, like a lioness guarding her cubs, I have also moved to protect my children from their father’s suffering and my fears. I do my best to give them information without frightening them. They cope with the blessing of innocence, as if to say, “We know daddy’s pain will go away, why don’t you?”

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 even further into myself.

Still, the week he decides to quit cold turkey, I am fraught with anxiety. Are you sure you know what you’re doing? I ask. Shouldn’t you be in a clinic? 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. All I can do is wait it out, wait until he emerges from this solitary hell.

*

Joel: Lying on the hot sand in Manhattan Beach last summer, I watch Mona and our children jumping over the small surf at the shore’s edge. Holding hands, they are screaming with delight. I feel like screaming in frustration. I don’t have the strength of body or soul to join them.

Not all days, of course, bring such indelibly sad memories. The reality is, when suffering from chronic pain, you have to create good days, forcing yourself to stay active or risk further descent.

I have tried my best to hang in at home and work. I have coached my 8-year-old son’s sports teams and wildly cheered my 6-year-old daughter’s every soccer goal. I help them with homework and wrap them in hugs. Yet even they have noticed there is less laughter in the home.

My relationship with Mona has been immensely more difficult. After giving so much to the children, I often have less for her. When she talks of the challenges and burdens facing her, I instinctively think: “Doesn’t she realize I’m the one with the burning pain in my head?” Sometimes I keep the thought buried. Sometimes I unleash it. Later, in remorse, I assure her things will get better, both of us silently skeptical.

But by this past August, I could no longer maintain the charade of invincibility at home and work. Despite the continuing injections, the pain persisted. Even the smallest problems seemed like crises. Having exhausted so many medical options, 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 Bay Area specialist in nerve pain.

After one visit, and yet another series of injections, this physician speculated that the occiptal was not inflamed--the diagnosis for years--but compressed where it attaches between the first and second cervical vertebrae. He directed me to a top-flight neurosurgeon in Santa Barbara, 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 the Harvard-trained surgeon 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 occiptal 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: Naturally, we wish this ordeal had never darkened our doorstep. But come it did, and in the manner of a relentless task master, it 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. Doctors can be right, but they can be wrong, too--as our family has painfully learned.

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, like a palm in a hurricane. Today, we know we can weather any storm.