A Sabbath of Unknowing

By: Dr. Jon Tilburt

Everything’s more casual out here in the West. The proximate parking, the summer-weight clothing, first-name basis with the CEO. Mayo Clinic in Arizona.

Wednesday, clinic day, I walk the halls with an apparent ease, like I’m comfortable in my skin, competent, experienced. My navy suit and bowtie around my neck. Pomade fixing my coiffed salt-and-pepper hair.

7:45 sharp, I rehearse my mantra at the door, rub sanitizer back and forth on my hands and knock, take a deep breath, peek my head in the exam room, and step into another’s story.

“Melissa, I assume,” I say, extending my hand. “Welcome to integrative medicine.”

She’s thin, 40-something, with wisps of tinted blond hair that sit behind her ears – the kind of person you’d see at Whole Foods in mid-day picking out kombucha. Orange hoodie and navy yoga pants, coordinating flip-flops — a Scottsdale Living snapshot.

“We’re here to help when things aren’t going well,” I say, “suggest natural ways of feeling better when pill-based solutions are exhausted.”

“Exhausted, now that’s a word,” she mutters as she rubs her temples. I nod, inviting more.

“The last few years it feels like my body is defying me. Like I’m not myself. Three years ago, someone found a suspicious nodule in my thyroid and recommended surgery.”

“As far as I can tell, I’ve never felt quite right since,” she went on. A severe pneumonia, antibiotics, and an unspecified viral illness.

“Let me think. Yeah, I guess that was right before Dad died.”

I give an empathetic frown.

She grabs her phone, places it in silent mode.

“It feels like — I don’t know — like my body is attacking itself. Like maybe I have autoimmune.”

I nod.

Most days she could barely get out of bed. Even with a full night’s sleep, she felt like crap the next morning. No energy. Headaches most days. Minor desk chair low back pain raged into a storm. She liked to do things naturally, but tests and doctor’s appointments became her norm. Infectious disease, endocrinology, neurology, rheumatology, cardiology — each did their drill, each concluding whatever her illness was fell out of scope for their specialty. Over time, the only thing that became clear was what she did not have.

She even saw a naturopathic doctor. A friend suggested a “Lyme’s Disease” “specialist” diagnosed her and started her on antibiotics.

“It helped for a while,” she said.

Then, a functional medicine doctor tested her spit, sent her stool for analysis, diagnosed “dysbiosis” and “leaky gut,” then contrived a separate, special supplement cocktail he happened to sell at his front desk. Those may have helped for a while too.

Online support groups spoke of probiotics, green coffee enemas, “adrenal fatigue,” and the supposed superiority of “natural” thyroid ground up from the necks of sacrificed pigs. She even tried going gluten-free. That helped for a while too. But nothing for very long.

The chances of Mayo Clinic finding something new, amazing, easily treatable, or life-limiting were slim. We were entering a land of medicine few know or understand, one in which the popular imagination of a savant-genius solving a puzzling case — like the show House — fails. Instead, we’re left muddling around with little clarity and few, if any, answers, and fewer TV-inspired imaginative analogies.

Each day Melissa could barely get her teenager off to school or muster the energy for a walk. Making plans, grabbing lunch with a friend, let alone working, seemed impossible. Pickleball and Pilates and executive assistant to the CEO of a large company? These were gone, probably forever.

***

My journey toward becoming a holistic healer, tucked down a back hallway within the strait-laced, leather-soled, Allen Edmonds mecca of establishment healthcare, began in 2005 while I was still a research fellow at Johns Hopkins.

I arrived late one night at a resort nestled in the Catalina foothills outside of Tucson. In the crisp evening air, the crackling lobby fireplace emanated memories of my Grandma Tilly’s wood stove, and her breakfasts, and the Prevention magazine sitting next to her Bible.

We few dozen physicians and nurse practitioners gathered in four one-week spans and online over two years to learn “integrative medicine” — care focused on the clinical relationship using natural healing tools. Faculty invited us to ask, “What does health mean?” “Is the body a machine or an ecosystem?” “What part of practice is a healing ritual?” “How do we hold childhood wounds as adults?” We walked the Sonoran Desert, made herbal tinctures, practiced guided imagery, and held our tongues at the roof of our mouths like yogis. Burned moxa over our forearms? Pricked oranges with acupuncture needles? As weird as these were, each intrigued, engaged, and shifted my perspective after a decade of elite establishment medical training.

There I met three Mayo Clinic physicians. One became a lifelong spiritual mentor, another encouraged me to apply for a job that would eventually lead Jackie and me first to Mayo Clinic in Rochester, MN, and then after a dozen frigid, most lovely years, to Phoenix during COVID.

Integrative medicine offered intellectual fodder to explore my interest in ethics, dissecting worldview conflicts, questions about the placebo effect, risk perception, informed consent, and the uncertainties of herbal medicine science. But even more, integrative medicine pieced back together a fragmented me and showed me a way of being in medicine, and constructively resisting modern medicine’s reductive, instrumental tendencies — a perspective that fit my spiritual dispositions. A practice in which I could use presence and touch to assess and refer patients for a range of healing modalities to foster inner healing was a medicine, it seemed, worth practicing.

Now, almost twenty years after finishing that program and practicing at Mayo Clinic, even our most skeptical, strait-laced, drug-pushing colleagues see our value — offering a good long chat, a tincture of common sense, and a way to reframe life when a wounded body simply will not cooperate. Sometimes, all we can do is hand someone a cup of water, listen, and after a pregnant pause offer a well-crafted, “Well, that really sucks.”

And that’s how it was with Melissa. I listened as she told me about her 60-hour workweek, her superhero role in her organization. How much her identity was tied up in it all. At least until she couldn’t do it anymore and started screaming at her instead. I maintained eye contact, offering a brief “mmmm” paired with an intent nod.

After a while, I turned to the sink, washed my hands, patted them mostly dry. Then, rubbing them together, warming them, letting them air-dry the rest of the way, trying to honor this stranger-touches-stranger cadence. I tap the exam table, inviting her to sit.

I commence with her jaw, ask if she grinds her teeth at night. She thinks maybe she does. Then her neck. “Ooo, right there,” she says, as my thumb passes over some trigger point. I proceed to her trapezius, interscapular and paraspinous muscles, and the quadratus lumborum flanking her lower spine. I mash on the upper iliac crests, the sacroiliac joint, bursa on her buttocks, and the outside of her hips. Then her thighs and calves. Each got a poke, probing whether she’d jump in response.

“I’m being a good sport, but it hurts,” she said. I asked her to walk, noting nothing tentative or unstable.

I didn’t do a proper fundoscopic exam, neither dilating her pupils nor lining up a magnified light to gaze through her eye’s lens. But all the same, while Melissa’s soft gaze stared straight at my bowtie, I think that morning I saw Melissa’s soul.

I had nothing profound to offer her. I couldn’t explain the genesis of this syndrome seizing her body. Sometimes it’s an old car accident, or growing up in an alcoholic household, or being stalked by an acquaintance. But my hour of probing left few clues, nothing noteworthy, attributable. Her marriage? Supportive. No assaults. Childhood? Stable. All I could figure was her over-giving to this company she believed in, hiding behind a smile in pain for so long, acquiescing to those who just assumed she would take care of everything, had made her suffering that much worse.

We made some summarizing notes and wrapped up. Hers was a difficult, complicated case, I said. By all appearances, she had myalgic encephalomyelitis, ME, the newer name and parent category for fibromyalgia and chronic fatigue syndrome. Not a disease, per se, more like a profound and debilitating dis-ease or syndrome. There were legitimate, scientifically valid categories for her situation even if her day-to-day experience felt like an enigma of the human condition. With ME, she could expect a normal prognosis, even if, many days, she might want to die. We talked about better daily rhythms, the importance of brain retraining, how meditation and guided imagery might reshape her fight-or-flight response, how acupuncture might recalibrate her autonomic nervous system, tilting it toward a “rest and digest” response.

It was all guesswork and would take time, patience, perseverance, and a sense of determined urgency to recover or at least cope. With her condition, time was an asset, not a liability, if she could dare to think of it that way. If she’d implement these few things, maybe in a year she’d feel 20% better, I said. But she should not expect to get back to her prior self. That self was gone.

Tears rolled down her cheeks.

Was it Melissa I was diagnosing that morning or myself?

I’ve been struggling to breathe, to find meaning in a barren wilderness of modern medicine even in a comparatively humane organization and in a job where long appointments and kind staff exist. Burnout, inhumanity, fiscal obsession, pill-pushing hyper-specialization, and waste cloud modern medicine’s best attempts at care. I push back in small ways. When I’m not seeing mystery cases like Melissa, I’m writing academic papers, conducting research, hustling to put together long, tedious grant applications, sitting on Zoom calls, all to make healthcare a bit better, more humane, through research and writing. To do it well takes 60+ hours a week.

I started out in medicine believing I’d get smarter, that the gap between suffering humanity and the unexplainable shit befalling us would abate with a Lexus-style relentless pursuit of perfection — more smarts and pills and updated formulas. But patients who I’d seen for years were summarily dismissed from my practice, surrendered to the impersonal hand of “restructuring.” Good, albeit opinionated, colleagues were forced out, even if their critiques served better care. I’d been overlooked for leadership positions; never risen to the prominence I once aspired to. And when I spoke up to our CEO on behalf of burned-out colleagues, daring to note we no longer loved the practice of medicine, I got shushed and pointed to wellness resources.

Then, in one last desperate attempt for renewal, I moved our family to Mayo Clinic’s Phoenix campus mid-pandemic, in 2020. But struggle followed me to the desert.

This desert is my teacher now, forcing me down a different path, thirsty, staring into a dark, barren landscape, on a pilgrimage with only intermittent companions — bearing witness to mystery alongside them, wondering aloud how might they, or for that matter, I, move forward in this brokenness — physiological, medical, spiritual.

And in this strange dry sojourn, especially this one day each week with patients, all that pausing, listening, “mmm”-ing works on me as much as it does my patients. I pause the hustle, the academic productivity, the email swatting, the device distraction and its discontents.

Those clinic days, the cleansing breath, the gentle knock, and the unknowing step I take into their inner sanctum — these acts, practiced habitually, all hold me.

Offering little more than silence and attention, I immerse myself in a sabbath of mysteries, a sabbath of unknowing, wrestling my restlessness in the proximity of calm.

***

Melissa landed back on my calendar a few months later. Just a quick Zoom call. Her face glowed.

How ’bout symptoms? I ask. About the same, she replied. Sleep? Rough. Too much pain, not refreshing at all. “I lay in bed all day,” she says. Genuine yet rehearsed empathy covers my face. I can’t imagine, I say. The social isolation must be rough. Worse in some strange way than cancer.

She dabs the corner of her eye.

Together, we think, talk, hold a moment, review which holistic tools might be worth another trying next. I order exercise testing to document the metabolic derangement in her condition. We agree to reconnect in a few more months.

Then she replies, “I hope you know how good you are. Do you know how important and helpful our conversations are for me?”

I smile and demur, placing my hand over my sternum.

“Hang in there,” I say. Then with a click of the red button we part.

I take another sip of coffee and walk another long, drab corridor, looking for another dose of hand sanitizer, and knock on another lonely door.

I hold Melissa’s question the rest of the day.

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Dr. Jon Tilburt is an emerging physician-writer who recently completed a mixed-genre MFA at Seattle Pacific University. His work explores the intersection of suffering, healing, and place.