fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

A Perpetual Lover

My pain is a cruel and jealous lover. It dictates my days and dominates my nights. It sulks and whines when it feels ignored. It consumes me.

I bargain with it. “Just give me one night, one night to sleep without you, and you can have me tomorrow.” Pain acquiesces. I nestle myself in a barricade of pillows and heated herbal packs that soothe my twisted limbs and drift gratefully off to sleep, only to have Pain invade my dreams. I cry out, though the torture is phantom. I awake, exhausted, to find Pain perched by my bedside, gleefully prepared to exact my promise.

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Wisdom from Her Younger Self

Grimacing, my middle-aged patient described a somatic pain radiating out from a deep-seated void. This decades-old ache manifested itself as intractable muscle tension or tenacious migraines or debilitating heartburn and was always accompanied by emotional anguish.

At the void’s root lay existential angst, exacerbated by dark skies, loneliness, major decisions, and life’s transitions. Her genogram revealed deeply entrenched generational trauma. Her lab workup was normal. She sought out various modalities—medication, acupuncture, psychotherapy, psychic readings, herbal remedies. Her flares were fewer, but they struck randomly, disrupting her life for days.

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Enduring the Invisible

Like everyone, I was taught as a child how to walk across a room on my own and how to hold a spoon to feed myself. As an adult, I never paused to marvel at these ordinary acts, while strolling to the mailbox or eating dinner with my family—until they slipped from my reach, replaced by chronic pain and deformed limbs.

Now, a week before my sixty-fifth birthday, as my home health care aide gently drapes a towel over my chest so I can attempt to feed myself, my embarrassment over the mess I will undoubtedly make of my cottage cheese and baked beans on that towel reminds me all too sharply of what I’ve lost.

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Debilitating Pain

The hospital CEO asked me to accommodate a new patient in my pain clinic, a young woman visiting for a few days, granddaughter of his colleague. “Of course,” I said.

“Jessica” was sixteen-ish, thin, athletic-looking, brunette. As usual, I addressed my questions to her, expecting her to tell me about her pain. But she replied, “Mom, you tell her.”

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COVID Complications

My husband and I had COVID right around Christmas last year. Thanks to the vaccines, I didn’t feel extremely ill—just some aches and pains, coughing, sinus pain, and shortness of breath. I called my primary care provider, and the person on call said to just treat the symptoms. She prescribed cough medicine and an antibiotic for the apparent sinus infection.

A week or so later, I saw my primary for something else, and I told her, “I don’t think my leg is supposed to look like this.” It had become swollen and painful, and my foot was dusky. The ultrasonographer in the practice was gone for the day. So my primary called a colleague in the ER who said she should bring me down there. My husband was waiting in the car, since we had planned to go out to dinner after my appointment.

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Diagnosis

After the bone marrow biopsy, but before all results are in, when you have some strength and an appetite, I make your favorites—turkeyburgers, coleslaw, baked beans. You stand in the doorway, eyes on me, just as you did when you were a child, waiting for whatever I’d create. Abracadabra, I’d say, presenting buttered French toast or a plate of still-warm chocolate chip cookies. You ate the cookies and cried for your addict parents who’d left you with me, who’d left a wound I couldn’t soothe.

I was the aunt who tried to replace them. But you were loyal and followed in your family’s tradition of depression and addiction. So many psych wards. So many rehabs, like your parents. Now, your white and red blood cell counts are low. I’ve tried to be your oxygen. I’m old now, foolish enough to think I can still be your breath.

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No Mud, No Lotus

A doctor rarely imagines becoming a victim of workplace violence leading to chronic pain. I was a young, idealistic geriatrician fresh out of my training when I began working in a memory care facility. It was a high-turnover unit, with residents dying or moving and new patients with dementia admitting almost daily.

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Reflections on Child Psychiatry

There is a specific kind of devastation in seeing a child failed by the world.

Today, I saw a fourteen-year-old girl who had taken glass to her skin. She came because she had been scratching away at her arm, at her eye. She had been banging her head against the wall. She had been screaming.

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A Cruel Companion

Pain has been my constant—and cruel—companion for eighteen years. My suffering when bone was hitting bone in my left jaw led to the first of five maxillofacial surgeries. None worked, even when I had radiation to prevent more bone growth. I have had Botox, acupuncture, physical therapy, medication—but nothing alleviates the pain that radiates from my jaw to my ear, eye and head. The prosthetic device in my head prevents me from opening my mouth to any great extent; going for a dental cleaning is excruciating, while having dental X-rays is impossible.

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November More Voices: Chronic Pain

Dear readers,

If I had to start my medical career from scratch, I’d devote more time to studying chronic pain. Specifically, I’d want to arm myself with more and better tools for alleviating it.

Over the years, I had many patients with chronic pain, and my success at treating them was spotty. Pain relievers were helpful–sometimes. Physical therapy and acupuncture were helpful–sometimes. A pain-management referral was helpful–sometimes. A conversation about past emotional traumas was helpful–sometimes.

But there were patients whom nothing seemed to help.

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Insomnia Dog

I had always been a good sleeper, until about the age of 30. At that time, my father was dying of metastatic breast cancer. I would wake up every night at 2:00 a.m., with a feeling that my chest was bound in steel armor. Those 2:00 a.m. wake-ups have been with me ever since, for the past 25 years. Now and then, I would work on my “sleep hygiene” by trying not to read my Kindle in bed and cutting back on caffeine.

A few weeks ago, I decided that my insomnia had gotten out of hand and asked a colleague for the name of a specialist in cognitive behavioral therapy for insomnia.

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Between

This week marked almost the halfway point of my life: the first half with hearing, the second with deafness and, then, cochlear implants. I’ve lived in between two worlds and cultures, hearing and deaf, never fully belonging to either.

During my first year in medical practice, I lost almost all my hearing in both ears. For most adults, hearing loss is gradual, but for me it was sudden. Despite treatment for autoimmune inner ear disease with some ups and downs, my hearing continued to deteriorate.

I was devastated! After so many years of school and medical training, could I continue to be a physician?

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