Disability

In 1983, I published my first essay, and not long ago, I reached my “1,000 career bylines” goal. As a totally blind person, I couldn’t have done any of this without Braille. Or, without the inspiration I receive from residents and staff of the senior facility where I live.

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?

Today as a family physician I am disabled in a way that I never could have dreamed in 1997 when I joyfully marched across the magnificent auditorium stage. I wore an ostentatious maroon gown and a green velvet sash, an enormous smile and relaxed shoulders. I shook the presenter’s hand and took hold of my diploma. Four years of delayed gratification, hundreds of thousands of dollars, countless late nights and long days culminated in this moment. The camera shutter in my soul CLICKED eagerly to capture it all.

Floanne, a fellow nurse, was a close friend of mine for thirty years. She was widely known for the grace and compassion she showed to those around her. Sadly, in her later life, she developed peripheral neuropathy. After a million-dollar workup at a hospital, the physician specialists declared her condition a mystery and therefore untreatable. Flo became confined to bed—unable to stand, walk, hold a book, or use eating utensils without assistance.

Dedicated physical and occupational therapists worked with her, and eventually she regained the use of her hands and could tolerate short periods in a wheelchair.

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.

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.

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.

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.

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.