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

Freedom

As a clinical psychologist, I saw many people disabled by intense emotional problems and psychotic illnesses. All were compromised to some degree. Many of the most compromised were inpatients on psychiatric units that I ran, before such units started closing down. Many ended up on the streets. Some were lucky enough to have family take them in.

One man I worked with was different. My psychology chief at the VA knew I taught relaxation therapy and asked me to see if I could help a patient on the spinal cord unit. After he got out of the service, “Tom” had been stabbed in the neck by a robber-addict’s needle. Paralyzed, he had feeling in one finger, but that arm stayed spasmed to his chest.

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Still Sitting Tall

My patient, a middle-aged woman with cerebral palsy, sat beside the exam table in a wheelchair. She had a steady presence about her—a quiet strength that filled the room.

“I used to stand,” she said. “But it’s harder now. My legs don’t work the way they used to.”

She wasn’t seeking pity. She was simply stating a fact. Her face showed both fatigue and resilience.

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The Medical Supply Store

I enter the medical supply store to pick up a walker in advance of my upcoming surgery. No one greets me as I approach the counter on crutches.

A clerk is chatting with another employee about their weekend. No one is attending to customers.

The clerk finally acknowledges me, and I explain why I am there. She asks me to come over to another counter, where she is standing, though I am on crutches and it would be easier for her to come to me.

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When Milestones Fall Short

His chart read like a list of losses: no speech, no eye contact, hand flapping, no interest in others. By age five, milestones expected years earlier had not been achieved.

His dad told me a different story: “He’s shy. He’ll catch up. Some kids just take longer.” He smiled as he spoke, but his eyes gave him away. His denial wasn’t ignorance—it was love that refused to let go of hope and that braced against fear.

Meanwhile, the baby brother babbled and waved. He cried when I checked his ears, burying himself against his father’s chest. Across the room, the preschooler pressed his hands tightly over his ears, trying to muffle the outburst. The contrast was stark. While the father soothed the baby, I reached for the older child. He drew back from my touch, his gaze locked on the floor.

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A Tall Tale

No physician would diagnose me with a disability. That label comes from within myself; it has been with me since I was age twelve and reached my adult height of 5’8”. I felt like a physical outsider—a Brobdingnag in a world of Lilliputians. Walking through the halls of junior high and then high school, I adopted the turtle trudge—head buried in my shoulders to try to take inches off my height. All I succeeded in doing was ruining my posture and causing my neck to constantly ache.

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October More Voices: Disability

Dear readers,

When I think of a disability, the image that pops into my head is that of Christopher Reeve, the sturdy, handsome, good-humored actor who played Superman in the movies and then suffered a horseback-riding accident that left him paralyzed from the neck down.

His story is a reminder of how fragile and uncertain health is, and how it can collapse under us at any moment–no matter how gifted or strong, handsome or fortunate we may be.

During my medical career I took care of many people who were disabled, although most of these disabilities didn’t involve wheelchairs or crutches.

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A True Exam Room

I recently accepted an opportunity to work in a new clinical setting. I now spend one day a week at a harm reduction site that serves people who are currently using or have used drugs within the past 12 months.

To my surprise, I’d passed by the nondescript brick building housing the site countless times. Clients come in to a room known as the “exchange”—a large space where they can make a cup of coffee or a bowl of oatmeal, grab some snacks, trade used needles or pipes for clean ones, or pick up a hygiene kit or a new T-shirt. Social workers make the rounds to assist folks with these tasks; as the clinician, I meander and chat with the clients, introducing myself as a doctor and offering to help them with any medical questions.

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Stranded

“Wait here,” Dr. X said. “Someone will come and set up your next appointment and give you a copy of your lab results.” So I sat down on one of the plastic chairs, took my Kindle out of my purse, and waited and waited in the exam room. The staff must be busy, I thought.

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The White Socks

No, that title is not a misspelling of Chicago’s baseball team, the White Sox, but the germ of an idea that started with literal white socks. When I was a teenager, kids could be critical. Heaven forbid if you wore white socks with blue slacks, like blue jeans. Oh, the horror!

Thankfully, time marched on, and recently I was sitting in an exam room with my husband, wearing blue slacks and white socks. A health-care professional walked in, and she was wearing blue scrubs and white socks. That exam room visit led to a hospital stay for my husband. As I was sitting in the hospital waiting room, I noticed that all of us in one corner of the space were wearing blue slacks and white socks. How refreshing.

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Naked and Seething

I should have paid attention to Red Flag Number One, which was having to provide my insurance information four times. Twice is normal—once when making the appointment and again when you show up for it. Four times is excessive; that was my first clue.

I also blew past Red Flag Number Two, which was the most dark, dismal, uncomfortable waiting room I’d visited in years. Patients were crammed into uncomfortable chairs with little to no space between them. Everyone in the room looked stressed and unhappy.

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Mine and Theirs

Forty-five years ago, during a sabbatical at a solo practice in a rural village in Wales, I learned to push back against office conformity.

The British National Health Service (NHS) had a prescribed set of colors for exam room furniture that they undoubtedly bought in bulk and provided as part of their support for general practitioners. Most offices I visited during my nine months with the NHS had standard-issue exam rooms.

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Appearances Can Indeed be Deceiving

It was long enough ago that I can’t recall why (did I change jobs? did my doctor stop taking my insurance?), but I was forced to find a new ob-gyn. Anyway, this would be my first female doctor, which promised to make the annual visit more comfortable.

Indeed, “comfortable” seemed to be the byword of her practice. The tastefully appointed waiting room with its soft lighting, vintage botanical prints, and soothing pastels looked more like a Laura Ashley living room than a conventional doctor’s office. There was a nicer than usual selection of magazines, too, I noticed. I sank appreciatively into a cushy floral armchair to wait my turn to meet my new doctor.

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