Issue #21, 2003
The Agony and the Agony
The Agony and the Agony
The plan was to break open the tiny tabernacle, split the relic, swallow it and see what transpired. To carry out this borderline sacrilegious project, though it was not our intent to be irreverent in any way, we used one of mother's steel steak knives, carefully dissecting the microscopic sliver of St. Thérèse's shin bone, no bigger than a pinhead, easier than swallowing half a baby aspirin. For verification and camaraderie as much as anything, I enlisted my sister Michele, thirteen months younger than myself, herself a saint in training. Michele and I looked at each other and gulped.
The repercussions were overwhelmingly uneventful. We wore ourselves weary during the ensuing weeks waiting for a more powerful moment: a rainbow above our house on Konzier Drive, say, or maybe a rose suddenly blooming out of season. That's the way it was in “Fifteen Saints for Girls,” the book that had riled me up and launched my youthful fanaticism, pain and miracles somehow provocatively entwined. Thérèse of Lisieux, known as “The Little Flower” was my favorite. Born in France to a wealthy family, the youngest of nine children, she had rejected worldly pleasures and entered the contemplative order of Carmelite nuns at age 15, then died of tuberculosis at 24. Her spiritual journey included hair shirts and self-inflicted pain—like soap bubbles through a wand, images as profound as they were confusing to an eight-year-old zealot.
Giving up chocolate bars for Lent seemed paltry by comparison, the measly sacrifice of a spoiled, post-Depression kid whose level of suffering had yet to exceed summer mosquito bites, easily negated by Dad, who paid five cents per welt.
It was during this phase of my girlhood that Uncle Tom—really a second cousin and a priest—gave me an authentic relic of St. Thérèse, a microscopic piece of her shin bone enshrined in an ornate filigree case shaped like a sun, studded with red rubies, complete with official Vatican papers. “Gross,” pronounced one of my best friends as we'd sit for hours looking out the window, listening to my transistor radio. But I was trapped by the sheer possession of something so supernatural.
And there was the imagined epigraph, unrevealed but significantly looming. Completely convinced that miracles could happen to even the most ordinary of girls, a repetitive tenet of the saintly biographies. Also in my developing mind, was the concept of the American Indian shaman, who used to uncover the medicinal powers of plants and herbs by slowly exposing himself to an unknown plant substance in tiny increments—first his skin, then lightly touching his tongue, then finally ingesting a minuscule tidbit. It became infinitely clear that the path to enlightenment was plausible.
One unexpected development. Along with initiating “The Plan,” I quickly realized my ominous conjecture justified the necessity of losing the gold case. Mortals were far too attached to material goods, I rationalized, not to mention that sooner or later, mother was bound to ask about the relic. If she never saw it, we'd significantly cut our chances of discovery. Telling a lie could defeat our good intentions. Even worse, it might make the whole thing a sin. I was still swinging on grapevines and hadn't yet developed the worldly foresight to consider that a couple of those rubies might have fed a small country.
We buried the case at the bottom of the kitchen trash. By the time mother rang the dinner bell that night, “The Plan” was beginning to seem more like a Wally and Beaver caper than a heavenly prospectus. I felt a stab of guilt, terror even. Had I really thought the whole thing through? My list of fears compounded as the days wore on with no miracles on the horizon, but to protect Michele, the innocent victim of my overanxious quest for holiness, I kept these to myself.
I shrugged off the idea of an instant miracle—I hadn't actually asked for anything specifically—and decided to evaluate the situation like a fortune cookie limerick pasted hopefully on a refrigerator door. That is, see if anything struck as the days passed.
The supernatural had a surrealist stratagem sans mortal control. Sure. Miracles could take days, maybe weeks? Miracles might require patience. Pilgrims to Lourdes and Fatima were often healed spontaneously, but they had made journeys in wheel chairs and on stretchers, I reasoned, and deserved instant gratification. Christ rose Lazarus from the dead in an instant, but he had a mere 33 years on the planet to complete a mission that would have to last until Armageddon.
Meanwhile, I came up with Plan II to circumvent any hazy wrongdoing regarding the first. Michele and I would scour the daily newspaper, point to a name in the obituaries and pray for that person all day. It seemed a worthy project, something the Little Flower might have done. “Fifteen Saints for Girls” said her glory was making differences in small ways. I took the name Theresa for my Confirmation in her honor, and because I wanted to be commensurably holy, I waited for pain.
I got the flu that year and had to miss New Year's dinner at Uncle Ed's, ham studded with cloves, scalloped potatoes, fancy chocolates and cashews. My fever was so high I secretly hoped it was all part of being divinely tested. Mother and Dad let me lie in their mahogany bed and watch TV, which wasn't so bad really. I wondered if that even counted as pain. Michele got hit in the head with a rock by Chuckie Gerson playing cowboys and Indians and had to have stitches in her scalp. That counted for her.
Mother never quizzed me once about the missing relic—an astonishing enough miracle in and of itself.
The idea of hotly awaited, saintly pain thinned with time and boys. I became consumed with how to make myself look more like Cher than the Little Flower. I started reading Allen Ginsberg and dating a Vietnam war resister who drove an MG with only one door. It was the Sixties. St. Thérèse's shin bone story had metamorphosed into good coffeehouse satire while retaining a stoic and admirable legacy during the peace movement years. Sometimes, when I'd see some odd thing in a thrift store or an antique emporium, I'd wish I still had that exquisite gold case.
If you could escape your fate, whose life would you step into? Put all lives in one basket and you'd most likely choose your own. I was plagued with colitis in my twenties but it went into remission. I was divorced but fell madly in love again. My children were intelligent, healthy, fun. I went back to college when they were teenagers, graduated with a degree in journalism, bought my first house, got my first writing job. Just when life seemed, relatively speaking, wonderful, a strange, crushing pain began to shoot down my arm in a most inhumane fashion. My neck and back muscles went into severe spasm, more like flagstone than flesh. Doctors and surgeons sighed at the pathology of my spine. It made sense for a football player or a world class wrestler, not a food critic with a taste for relics. Pain had become a snotty child playing an endless game of tag, intent on driving me away from the things I loved most.
Five years down the road, I am madly spilling my papers around 4 a.m., searching for an 800 number copied from a late night infomercial for a miracle cream called “Blue Stuff.” I am in desperate pain. In the cerebral world, anything called “Blue Stuff,” advertised when all but bartenders and shift workers are asleep, sounds nonsensical, but in the world of pain, where short-term memory is a casualty, touting an anesthetic as “Blue Stuff” seems completely logical. I wouldn't wake up and be able to recall, say, a product called “Apocalypse Now.” I might remember that it had a name like a movie that started with an “A.” But “Blue Stuff,” I could remember that. And 40 dollars? A price just high enough to make one stop and consider “Is this a rip-off or a theatrical tour de force to cover up a clandestine cure?” It's barely a bag of groceries. In the light of day, more pain, less hope. I'm still looking for that damn piece of paper.
Did I ever pray for pain? C'mon. I was just a kid. I never meant to, and if I did, claiming youth, I take it back.
I should confess that Prior to Pain, I maintained a legacy of resisting support group types. As far back as high school, I refused to join National Honor Society and declined having my picture taken for the senior yearbook. Those touched-up photos looked more like a funeral pose than the portrait of a young girl who wore Love Beads and McCarthy buttons. It was the late 60s and it all seemed so narcissistic when you had friends who were going to prison instead of Vietnam, others coming home in body bags. I was trying to stay out of the high school limelight and avoiding Trivial at all costs.
Pain starts like a war, a surprise aggressor taking victims in open revolt during the night. You become the defenseless transgressed. It strikes; you fight. At first you're in shock, struggling for equilibrium. I had no perception of fear in the beginning. Just fight. Violent retaliation. Fear creeps in as the pain fails to subside, and as its intensity grows, so does its cruelty. After two years of battle, muscles locked in perpetual spasm, persistent pain keeping me from the things I loved most, enough physical therapy that my insurance company informed me I was close to reaching my “lifetime” limit, I decided to join a Pain Group.
“You'll never come back,” I remember Russell, a long time regular, saying after my first foray into the Pain Group, and I knew this was meant as a challenge. I was a cynical smart aleck that first session, firing questions at the doctor, hammering away at the biology of pain, determined to uncover any secrets being kept from me, somewhere in France probably, places where the movie stars and people with money go for cures. Run down and isolated for so long, I was surprised by my re-emerging spunk. With something new to liquefy the loneliness, I couldn't wait for 6 o'clock on Thursdays.
Somehow, a clinical room in an over-lit hospital became our secret club. We'd turn the lights down low, fix each other cups of tea, trade books and tapes, weird supplements, secrets for pain-jolting, middle of the night meltdowns. We were held together in combat.
My comrades in pain gasped when I said I didn't pray. I didn't take prayer literally, that is, I didn't perceive it as one-on-one connection at a bargaining table between a divine entity and a creature like myself. But because of them I began a ritual conversation I call praying. I wish for small things, mostly short periods of relief. A year? 6 months? Could I just get that? Every other day? Give it to me every other day. Break it into half a day? Sometimes I sneak in asking for a good night's sleep. Sometimes I make vows. “I'll do something that really matters. I'll go to hospitals and sit with people in dim rooms who need me.” Of course, I strike bargains, make promises. “Just take the damn pain away and I'll carry placards for research, start marathons for money, fight the nonsense about banning pain medications because they are being used as street drugs.” Sometimes, I just think “Oh please give everyone a few days of real, unrelenting pain,” and then I can't help but pick out a particular nemesis or two, something Thérèse of Liseux would have flogged herself bloody for. And then my Catholic schoolgirl guilt invades my conscience and I apologize. I ask for the pain I had back in 1999. That would be fine.
One of my physical therapists meditates early in the morning and in one of these moments, it came to her that I should peck on my computer while sitting on one of those giant, inflatable exercise balls. She ordered one according to the length of my legs, and other than when I have to make a deadline, in which case I seem to need the same hard stool I've always sat on, I use the ball. It's a pretty inane picture if you step back and take it in. Regardless of ergonomics, I am able to write less and less.
I fail to grasp the hypocrisy that glamorizes silent suffering. I have little patience for false bravado. Why are people who supposedly suffer quietly the “good people?” I've thought of blaming Jackie Kennedy somewhere in there (even Jesus cried out from the cross) but I know that's not fair. Jackie rightfully held herself together bravely for the nation during the dark days following Kennedy's assassination but when she was dying of cancer, behind the dark glasses and head scarves, I hope she cried. I really do. People came right up to Jesus and begged for pain relief. They moaned. They cried. He never told them to buck up and be silent. He placed his hands on them.
“There are no bridges to let anyone in on the dragons of your private pain world,” says my husband Brad, who has had Crohn's disease since he was 20 and knows something about getting sick when your life is just ahead of you. Brad was a college student, a history major, a drummer, when he started having embarrassing gastrointestinal symptoms—painful bloating, cramping, gas. He had never heard of Crohn's disease. His descent into illness involved a year of undiagnosed symptoms. Just stress, maybe ulcers. Watch your diet, he was told. The pain kept escalating, but of course, you can't see pain. Barium eventually revealed Crohn's disease.
The term “incurable” rang in his head. He graduated from college a term early, took a job, all the while growing sicker and sicker. Finally, he took a month off. Two months later, he could barely walk or eat. Three weeks after that, he started vomiting black gruel. His bowel had a pin-hole perforation but the doctors hadn't discovered it with all the fine-tuned testing. They forced an NG (nasal gut) tube down his throat. “They hold you down, your eyes tear up, you feel like you'll choke to death. In retrospect, I've had good people do it, and I've had beginners—and believe me, you don't want a beginner.”
Your body creates about a quart of gastro-intestinal fluids each day if you are properly hydrated, even if you don't eat, so by emptying his bowels the pain eased up and the perforation remained undetected. After 10 days they pulled the tube. Spying a cracker on his hospital neighbor's tray, he snuck two bites. The cracker turned out to be the proverbial straw—13-14 inches of weakened intestine split open within the time it took the Saltine to travel the length of his small bowel. He got out two yelps before his right side became paralyzed. “I didn't need anybody to tell me I was dying. At that point, you simply don't care. You just want it to stop.”
Only about 3 percent of Crohn's patients ever rupture. But rupturing a second time? Doctors say it just doesn't happen. When it did almost 20 years later, I was at work. Brad had been going downhill steadily for months. During a pre-surgical consult at Cleveland Clinic, it had been determined that he had to have more small bowel removed. I flinched, asking the specialist to refer us to a Pittsburgh gastroenterologist, “just in case.” When you live with someone with a chronic illness, the “what if” syndrome is a life preserver. “What if we didn't have time to Life-Flight him to Cleveland if something went wrong pre-scheduled surgery? What if...” Brad was so weak that he resisted another doctor visit, but I dragged him anyway. The doctor in Pittsburgh, trained by the famed surgeon from Cleveland, sat knee-to-knee with Brad, looking him right in the eye—little things that can make doctors welcomingly human. He reviewed his films carefully, agreed that surgery was imminent. As we left, he mentioned that we were his last patients that day, that he was off on a long-awaited vacation with his wife.I tucked his card into my coat pocket. “Bon voyage,” I said, shaking his hand. “I LIKE him,” Brad managed to croak. I went off to work, leaving Brad in his world of pain. Shortly after I arrived, the telephone rang. “You better come home,” Brad squeaked. On the street, I could hear him through the thick stone walls of our old house, a deadly, haunting wail. He emerged from the garbage can long enough to call out “I've ruptured.” I phoned 911, pulled the doctor's card out of my coat pocket. “He's gone", the secretary barked. “GONE. He doesn't even have his pager.” I garbled my number anyway. As the ambulance came roaring up the drive, the phone rang. “I'll meet you at the E.R.,” the doctor said. The memory of the relic flickered as my focus dissolved. As miracles can be slightly imperfect, Brad was forced to spend the night writhing in pain because though the good doctor stayed behind, most likely pissed off his wife, not to mention saved Brad's life, he did not think it possible that Brad ruptured a second time. I saw pain that night I hope to never see again.
“You have been given the opportunity to experience chronic pain,” began a Cleveland Clinic spine specialist as he walked into the room after reviewing my MRIs. I slumped lower into my chair, stared at the ceiling. This, I had discovered, had become the latest buzz-phrase, a hip approach in the mode of psychobabble when you can't retrieve the patient from the pit back to the natural world. The nouveau way of lowering the boom, direct but pseudo-far Eastern. If only I had a baseball bat, I imagined, I could take a swing at his knee cap and then calmly, clinically, with perfect, detached professionalism, recite his lines back to him.
Again, I apologize to the deity.
I wanted to ask about Norman Cousins, ascorbic acid IVs, Andrew Weil, hyperbaric chambers, intramuscular Botox, subcutaneous administrration of growth hormone. An experimental pain drug that doesn't turn your brain blotto?
Instead, I gave him the look I used to give my mother when I was sixteen, then talked about him loudly when he left the room, knowing he could hear me. He was nicer when he came back, with literature to quiet me down, offering me an extended stay we both knew my insurance wouldn't pay for. We even got friendly for a moment, engaged in light banter. I asked him to direct us to a restaurant, envisioning him swirling an after-work cocktail with a colleague, flushing the day's case residue out of his system.
People tend to shun the ugliness of pain, partly because it makes the onlooker feel helpless, depressed, but mostly because the onlooker realizes there's nothing but sheer luck between themselves and a similar fate. Pain research will never escalate if those of us who are in pain don't rail. Why don't we? Because we're afraid. Powerless. You quickly become marginalized if you complain. The reasons are as ambiguous as they are complex, but I can tell you there's a constant low humming in the back of our minds that keeps us silent—whatever relief we've been granted may be taken away. Practioners have to navigate a maze of insurance issues and puritanical drug regulations distracting them from the metaphysical and ethical issues of pain management. We're sent to pain clinics who are closing their doors and sending us back to the primary care doctors who sent us there in the first place. Doctors may mistake our pain for hysteria and write us off as malcontents. Lucky you are to find a doctor who has suffered severe pain, either chronically or acutely, because the subject matter is given scant attention in medical training. The rights of the ill have been so trampled down by the “War on Drugs” that the legitimate patient who needs pain medication has to jump through such laborious hoops that I've heard 80-year-old women in pharmacy lines say they are treated like street addicts.
New Year's Eve. Instead of making a last minute stop for a bottle of bubbly, I sit in an outpatient hospital room for about 8 hours, waiting for a doctor to enter my neck with a needle, cauterizing nerves. I had been told not to take my muscle relaxants. As a result, my neck was like a stone pillar. The doctor kept coming around, engaging in rather lengthy discussions. The more we talked the less we liked each other, and the less we liked each other, the more reluctant I was to surrender to the procedure. I was waffling up until the last moment, chickening out, recanting, back and forth, something loose inside of me clawing away at a gut feeling of impending apprehension. When I was finally wheeled into the operating room, stuck on a gurney big enough for a skinny midget, strapped down, given no anesthetic, I was trembling. Of sound mind sans medication, I distinctly remember being told “Call out if you feel any pain.” The needle went in, blocked by spasm.
I gasped when the pain caught me by surprise, as I'd been instructed. The doctor ripped off his rubber gloves, aborting the procedure. I called faintly after him “Please, let's try again. I'll try again.” But he was off, down the hall with a plastic model of the spine, expounding with great rancor. My husband said he could not make out much of the heady medical jargon, but that the doctor resembled a man engaged in damage control in the spin room of a political campaign.
Meanwhile, half naked and out of options, I felt small, lost, abandoned, Hester Prynne in a roomful of gawking residents, a scarlet letter on my chest. I hung my head, dressed and slumped in one of the vinyl hospital lobby chairs waiting for the car. And I started to cry. And cry. It was New Year's Eve and I cried because there were so many people behind those walls just hanging on for their next dose. I cried for Brad all over again, for kids all over the world uprooted from childhood by pain. I cried because Jackie Kennedy didn't. I cried for all the choking eulogies praising silent suffering. I cried because I find silence demeaning, not courageous. I cried because I am in too much pain to sit at the computer and browse the Internet to figure out if somewhere, someone has found something I haven't tried. I cried because my muscles were slamming into my spine like a wrecking ball and “Blue Stuff” didn't work.
Can I remember what it was like NOT to have pain, a hypnotist asked me the other day. I stopped for a moment. “Yeah, I do,” I said like an overeager bride. “I DO.” “Then I can help you,” she said. “But not today.” My expression fell harder than a kid who had just lost heaping double scoops from the top of a sugar cone. “Next week I may have an opening.” She pulled out her smooth leather appointment book. “Of course, my services are not covered by insurance. The fee is ninety dollars, payable at the end of each session."
Deborah McDonald grew up in Pittsburgh during the 1950s. She is a freelance writer and food critic. read more
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