“I was cast as the needy patient, clamoring for attention.”
Matter Over Mind
“I was cast as the needy patient, clamoring for attention.”
Between my second and third lumbar vertebrae, where most people have a spinal disc, I have an empty space spanned by a bridge of bone. Two years ago, a staph infection consumed that disc, as well as much of the adjacent vertebrae. During that great bacterial feast, all I knew was my interior landscape of pain—a mountainous, unending chasm. My failure to accurately describe this pain to my doctors, combined with their failure to correctly diagnose me, almost cost me my life.
It started in early October 2014: a persistent soreness in my low back that came on as I stretched after a jog. When yoga and rest failed to help, I went to the local Convenient Care, where Dr. K. shot a dose of ketorolac, a super-strength non-steroidal anti-inflammatory drug (NSAID), into my hip, and prescribed cyclobenzaprine, a common muscle relaxer. He recommended following up with non-prescription NSAIDs as needed, ice followed by heat, and gentle exercise. He gave me a back-care pamphlet. It was low back pain, he said, an affliction that hits about eighty percent of adults at some point in their lives. I would have to join the club.
But the pain got worse. It spread across my lower back like an ooze of sulfurous swamp water. I began sleeping on a heating pad (a no-no). One morning, my husband noticed red streaks on my skin—a telling clue, for someone paying attention. I thought I’d burned myself, and began covering the heating pad with a towel.
Four days later, I returned to see Dr. S. in Family Medicine, who took an X-ray of my lumbar spine, which revealed no abnormalities. He ran some blood work, prescribed oral ketorolac, and told me to rest for a few days. If I ran a fever, I should call.
The pain continued to worsen, particularly at night. I woke with muscle spasms as intense as labor contractions, my belly hard to the touch. The painkillers were useless against these spasms; my only way through was to moan loudly with each exhale, a strategy that had gotten me through two natural childbirths. Only this time, there was no purpose to the pain, no joyful endpoint that I could focus on. Only the hope of eventual relief. My husband started sleeping downstairs.
Two days after I visited Dr. S., my thermometer read 101.4. I returned to Convenient Care, where the on-call nurse practitioner sent me to the emergency room. She mentioned my blood work had shown a slight elevation in white blood cell count. Third time here this week, her notes from that appointment read.
At the ER, I lay on a hospital bed, answering questions from Dr. P. By this time, I had begun to measure my days in doses of pain meds. I could feel the minutes ticking down, the next spasm hanging over me like the tang of distant rain. I told Dr. P. that I needed more meds; when none were forthcoming, I told the attending nurse. Suspicion clouded her face. Drug user, I could tell she was thinking. Addict. “The doctor thinks it’s a kidney stone,” she told me. “I had one of those. Horrible pain until you pass it, but then it’s gone. Mind over matter, that’s how you get through it.” She left me alone, saying she’d get me more meds soon.
Not soon enough. The spasm arrived, low in my back, then radiated through my abdominal muscles, hardening the whole of my lower torso. I moaned; I howled; I vociferated—irritating, I’m sure, everyone on the floor. Eventually, the nurse hurried in some pain meds, an aggravated expression on her face. Soon a technician whisked me off to the CT scan machine.
A CT scan combines multiple X-ray images taken from different angles to give a cross-sectional view of the body’s interior. Like an X-ray, it can reveal bone injury, but is not as effective as an MRI at distinguishing subtle differences in soft tissues. My burgeoning infection went unnoticed. The only thing Dr. P. found was a large mass of stool in my lower intestine. Constipation, an added discomfort, was a side effect of the meds I was taking, as well as my week of inactivity. It’s also, as it happens, a sign of narcotic use. When Dr. P. returned, he pulled the curtain closed behind him, and in a low voice, asked if I’d been taking narcotics. I assured him I’d only taken the meds prescribed to me, none of which were narcotics. He prescribed laxatives and told me to follow up with my primary care doc in a few days.
If anyone was responsible for connecting the dots, for thinking synthetically about my symptoms, it was my primary care doctor. Had she reviewed my records carefully and interviewed me thoroughly, she would have noted several red flags: the persistent back pain, the red streaks on my back, the unexplained fever, the elevation in white blood cells. But Dr. R. did not connect the dots. Maybe she was distracted by the medical intern shadowing her that day, or even by me and my misguided (and, in retrospect, laughable) new hypothesis that my severe back pain was due to one of my legs being longer than the other. Maybe she didn’t review all the records thoroughly. Maybe the records themselves were too cursory, too hastily completed, to ring any alarm bells. Whatever the reasons, she failed to identify a possible infection, and instead diagnosed me with sacroiliac joint dysfunction. She recommended I see an orthopedist.
Meanwhile, the pain deepened, drawing me inward—up its steep, spiky peaks, down into its dark, sinuous hollows. I became obsessed with its management. I took myself off the constipating muscle relaxers and tried a strict alternating rotation of acetaminophen and ibuprofen, one dose every three hours. Every morning, I did the series of back exercises from the back-care pamphlet. I pored over a friend’s back health book and modified my walking, sitting, standing, and even lying-down postures. I went to an acupuncturist and an ortho-bionomist as often as I could afford it. Other than brief bouts of temporary relief, nothing helped.
Oddly, my journal entries from those days tell a story of illusory improvement, hampered by frequent “setbacks.” Now, it looks like deep denial, but then, I must have needed to feel that my efforts to get better were working. The downside of this dogged optimism was that whenever I had one of my “setbacks,” I blamed myself. I wasn’t doing the back exercises well enough, wasn’t standing properly, hadn’t achieved the right meditative state within which to endure the agony. In a particularly disturbing entry, I wrote about my back pain in the past tense, as if I’d already overcome it and was now looking back on it with some hard-won spiritual wisdom: “If I had been more willing to accept the fluidity—the impermanence—of my own identity, maybe the intensity of the pain would have decreased.”
Meanwhile, the staph began to gorge on my bones.
I began to need help getting out of bed in the mornings. I leaned my full weight against my husband’s strong body because I couldn’t trust my own to hold me up. One morning, I fainted in his arms as he helped me out of bed, then fainted again on my way from the kitchen to the living room. In a borrowed wheelchair, he wheeled me into Dr. K.’s office, whose eyes widened in shock. Five weeks earlier, he’d diagnosed me with common low back pain; now, I couldn’t walk.
He ordered a rush MRI. “They’ll call you this afternoon to schedule it,” he said.
But the call didn’t come. Not that afternoon, or the next day. Finally, two days later, I called them. The doctor’s office was stumped, and referred me to the health insurance company, who told me Dr. K.’s order had been downgraded from rush to standard. I would have to wait up to two weeks to schedule the MRI, and as much as another two weeks for the appointment itself. When I asked why, I was told that the company had determined my case to be of unconvincing urgency. Once again, I was cast as the needy patient, clamoring for undeserved attention, a role I was so afraid of playing that I thanked her without a fuss and hung up the phone.
At the urging of a smart student of mine, I called back six days later to complain. I told the employee at the other end how I’d fainted twice from the pain on the day Dr. K. had made the rush order, how I’d been wheeled into the office because I could barely walk, how the pain was unceasing, how it was absurd that an anonymous paper-pusher’s opinion should have more weight than the doctor’s who’d seen me. She replied feelingly and said she would bring it up with her supervisor.
Things happened quickly after that. The hospital called to schedule the MRI. Later that week, I lay inside the machine’s plastic tube, my eyes closed against its bright strips of light, earplugs muting its deafening clicks and buzzes. I got back home to a ringing phone. The hospital wanted me to return immediately for a second test, this one with gadolinium, a contrast dye that would help them see the results more clearly. An hour after that test, Dr. K. called. I should to go to the ER immediately. The MRI had shown evidence of an infection.
Lying once again under blankets in the cold ER with my husband sitting beside me, I might have felt relieved if I hadn’t been so afraid.
Once I was admitted, I was put on a stopgap intravenous antibiotic—Nafcillin—until Dr. M., the infectious disease specialist, could determine which germ had settled in my spine. Also, Dilaudid, a powerful narcotic. No one questioned my need for painkillers now. I remember only scraps of those six days I spent in the hospital.
I do remember Dr. M. telling me that Staphylococcus aureus had colonized my blood. Luckily, this strain of staph usually responded to antibiotics. They knew what was in my blood, but not yet what was in my disc, and while it was likely the same germ, they had to be sure. So they plunged a long needle into my spinal column to aspirate my spinal fluid, and sent an ultrasound sensor down my esophagus to determine whether the staph had lodged in my heart. I was doped to the gills for both procedures, but awake.
The opiates blocked the pain, but didn’t release me from it. Only the antibiotic did that. Once the Nafcillin began to lay waste to the colony in my spine, the pain lifted. The unrelenting bacterial banquet was over.
Six days after I was admitted, I was released from the hospital, equipped with a heavy-duty back brace and a PICC line, through which a portable pump doused my veins with antibiotic twenty-four hours a day. I carried that IV pump for eight weeks; the back brace I wore for twelve.
Now, two years later, I’m mostly back to normal. I can jog, practice yoga, and even do backbends. My vertebral bone has healed itself, with a bonus: that bony bridge, my body’s compensation for the missing disc. The only noticeable damage is a slight protrusion in my spine. I can feel it against the floor when I lie on my yoga mat. My husband touches that spot when he hugs me, as if to make sure the bridge of bone is still in place, that its span will continue to hold me up. It’s not painful, it’s just there—a reminder of the importance of being your own very vocal advocate in a health care system controlled by the bottom line and run by fallible, overworked human beings. No one else will do it for you.