Dislabeled

My memoir, Where the Light Fell, tells the saga of my older brother, in whose shadow I grew up. Marshall was blessed with an off-the-charts IQ and preternatural musical gifts, including absolute pitch and an auditory memory that enabled him to play any music he’d ever heard. Everything changed in 2009 when a stroke cut off blood flow to his brain. One day he was playing golf; two days later he lay in an ICU ward, comatose.

Only a rare type of brain surgery saved Marshall’s life, and thus began his new identity as a disabled person. In a reprise of childhood, it took him a year to learn to walk, and more years to speak sentences longer than a few words. He persevered, coping with a useless right arm and a speech condition called aphasia. Now he proudly wears a t-shirt that says “Aphasia: I know what it is…I just can’t say it.”

From my brother, I learned the challenges of disability. The vexation of being unable to get words out. The indignity of needing help with simple activities like taking a shower and getting dressed. The paranoia of knowing friends were making decisions about him behind his back. In public, strangers averted their gaze, as if he did not exist. Only children were forthright. “Mom, what’s wrong with that man?” they’d say before being shushed; bolder ones approached his wheelchair directly to ask, “Can’t you walk?”

The frustrations grew so great that Marshall researched how many Valium and Ambien pills a suicide would require, then downed them all with a quart of whiskey. His desperate attempt failed, thank God, and he ended up in a psych ward. Since then he has gradually rebuilt his life, aided by many hours of therapy, and now manages to live on his own and drive an adapted car.

A year ago, while skiing in Colorado, I gave clear instructions for my legs to turn downhill, and they disobeyed. Instead, I slammed into a tree, breaking my boot and ski and badly bruising my left calf muscle. Strange. My brain had given orders, and the legs simply ignored them.

Over the next few months, other symptoms appeared. My walking gait and posture changed. My handwriting, already small, grew even tinier and sloppier. Some nights I had mild hallucinations during sleep. I made many more mistakes while typing on a computer keyboard. My miserable golf game became even worse. I mentioned one possibility to my primary care physician, who replied, “You’re in great shape, Philip. You can’t have Parkinson’s Disease.” (Always get a second opinion.)

By last Fall, I was living in a time warp. Tasks such as buttoning a shirt took twice as long. I felt as if some slow-moving, uncoordinated alien had invaded my body. When other people began noticing, I knew I had to get checked out medically.

In my insurance network, no neurologist was available for six months. So I changed insurance plans to one with a wider network and leaned on a friend to arrange for an appointment in her state-of-the-art facility. Last month a neurologist confirmed a diagnosis of Parkinson’s, a degenerative disease that disrupts connections between muscles and the brain. I began a dopamine-based treatment along with physical therapy.

As I informed a few close friends, I feared that now I had acquired a new label: not just Philip but Philip-with-Parkinson’s. That’s how people would see me, think of me, and talk about me. I wanted to insist, “I’m still the same person inside, so please don’t judge me by externals such as slowness, stumbling, and occasional tremors.” In fact, I coined a new word—dislabled—in protest. I had seen others judge my brother by his cane and withered arm and shyness to speak, unaware of the complex and courageous human being who exists behind the screen of those externals.

Then, less than a week after my diagnosis, reality forced its way in. As if to prove nothing had really changed, I decided to try the new sport of Pickleball, kind of a cross between tennis and ping-pong. Within five minutes I dove for a ball, stumbled, and pitched forward. Any reflex to break my fall kicked in too late, and I landed face-first on the hard surface. Waiting in a packed emergency room for eight hours, I realized that I had undeniably joined the motley crew of injured and disabled people who visit such a place on a Wednesday night. I’m not dislabled after all.

From now on I will be making adjustments. No more leaping from boulder to boulder on one of Colorado’s 14,000-foot mountains. No more kamikaze runs on a mountain bike. Ice skating? Probably not. Definitely no more Pickleball!

In a preview of aging, disability means letting go of ordinary things that we take for granted. I shouldn’t even climb stairs without using a handrail, and walking is now my safest form of exercise—as long as I watch my feet and don’t shuffle. Just as I’ve had to slow my pace when walking alongside my brother, now others must slow their pace for me.

A friend who heard my news sent me a reference to Psalm 71, which leads with these words:

In you, Lord, I have taken refuge;
let me never be put to shame.

Although the poet wrote in very different circumstances, harassed by human enemies rather than a nerve disease, the words “let me never be put to shame” jumped out at me. Other psalms (see 25, 31, and 34) repeat the odd phrase.

A measure of shame seems to accompany disability. There is an innate shame in inconveniencing others for something that is neither your fault nor your desire. And a shame in having well-meaning friends overreact: some may treat you like a fragile antique, or complete your sentences when you pause a second to think of a word. Though still experiencing only mild symptoms, already I anticipate shame over how these may worsen: drooling, memory gaps, slurred speech, uncontrolled tremors.

Shame can sometimes goad to action. After my diagnosis, six friends wrote that they had observed something unsound about me, but didn’t mention it. Only two risked being as blatantly honest as a child. During a restaurant dinner one said to me, “Have you got the slows, Philip?”—earning a look of reproof from his wife. Another, more blunt, asked, “Why are you walking like a decrepit old man?” Those two comments spurred me to intensify my search for a neurologist.

“Do not cast me away when I am old; do not forsake me when my strength is gone,” Psalm 71 adds. That prayer expresses the silent plea of all disabled persons, a group that now includes me. The CDC calculates that 26 percent of the U.S. population qualifies as disabled. Now that I have joined them, I try to look past the externals—as I do instinctively with my brother—to the person inside.

In the first month of my own acknowledged disability, I have become more self-conscious, which can be both good and bad. I do need to pay close attention to my body and my moods, especially as I adapt to medication and learn my physical limitations. Yet I don’t want to obsess over one part of my life, letting a disease define me. Warning sign: the other day I opened a newsletter and mistakenly read Daily Medication instead of Daily Meditation.

Time magazine recently ran an who has written a book on “Disability Pride.” A newly vocal generation wears the disabled label as a badge of honor. Members of the deaf community, for example, scorn such euphemisms as “hearing impaired” and refuse medical procedures that might restore their hearing.

In contrast, I admit I would be delighted to have Parkinson’s magically removed from my life. I would hold a pill bonfire, cancel my order for a cane, and dust off my climbing gear. However, I don’t have that option, and perhaps the disability activists are simply focusing on accepting the reality that some things can’t be changed.

Although I still cringe at the awkward euphemism “differently abled,” I understand it better now. The phrase points to the fact that life is patently unfair and people are unequal in their abilities. My brother played piano concertos while I was struggling to master scales. Compared to Tom Brady or Venus Williams, we’re all athletically disabled. And, though Parkinson’s may eliminate some of my favorite physical activities, I can enjoy others that a quadriplegic person may envy.

No two human beings have exactly the same set of abilities, privilege, intelligence, appearance, and family backgrounds. We can respond to that inequity with resentment— or somehow learn to embrace the gifts and “disabilities” unique to ourselves.

In my writing career I have interviewed U.S. presidents, rock stars, professional athletes, actors, and other celebrities. I have also profiled leprosy patients in India, pastors imprisoned for their faith in China, women rescued from sexual trafficking, parents of children with rare genetic disorders, and many who suffer from diseases more debilitating than Parkinson’s. As I reflect on the two groups, here’s what stands out: with some exceptions, those who live with pain and failure tend to be better stewards of their life circumstances than those who live with success and pleasure. Pain redeemed impresses me more than pain removed.

This latest twist in my life involves a disease that could prove incapacitating or perhaps a mere inconvenience; Parkinson’s has a wide spectrum of manifestations. How should I prepare? I was blessed to know Michael Gerson, a New York Times columnist and White House speech-writer who lived with Parkinson’s for years before succumbing to cancer. A colleague said of him, “At the peak of his career, he used his influence to care for the most vulnerable, spearheading the campaign to address AIDS in Africa. When he was at his lowest point physically, he never complained but focused on gratitude for the life he had lived.”

That is my prayerful goal. After a bumpy childhood, I’ve had a rich, full, and wonderful life with more pleasure and fulfillment than I ever dreamed or deserved. I have an omni-competent wife of 52 years who takes my health and well-being as a personal challenge. Sixteen years ago, when I lay strapped to a backboard with a broken neck after an auto accident, Janet drove through a blizzard to retrieve me. Already she was mentally re-designing our house in case she needed to prepare for life with a paralytic. She shows that same selfless, fierce loyalty now, even as she faces the potentially demanding role of caregiver.

My future is full of question marks, and I’m not unduly anxious. I have excellent medical care and support from friends. I trust a good and loving God who often chooses to reveal those qualities through his followers on earth. I have written many words on suffering, and now am being called to put them into practice. May I be a faithful steward of this latest chapter.

 

 

 

 

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