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Mesa Musings: She’s still a vibrant lady, a fighter

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She’s an impressive lady.

An educator for more than 30 years — now retired — the attractive, poised and courageous woman used to be highly esteemed. Almost no one takes notice of her any longer. It’s not her fault and, frankly, it’s shameful.

She’s confined to a wheelchair. Unfortunately, our shallow, self-centered, materialistic society often treats such people shabbily.

The once-vibrant woman suffers from Parkinson’s disease accompanied by a devastating second blow: a degenerative companion condition known as multiple system atrophy (MSA). MSA dispenses a horrific dose of misery. I confess that I know little about it, but I can tell you it’s a neurological disorder that’s nothing short of devastating.

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And degrading.

Automatic body functions, such as bladder control, shut down. One doesn’t have the luxury of endeavoring to maintain one’s “dignity.” It’s simply not an option.

Parkinson’s is a brain disorder that causes nerve cells to die or become impaired. Symptoms include tremors, shaking, slowness of movement, rigidity, stiffness and balance problems. It can also manifest itself in a shuffling gate, muffled speech and depression.

The aforementioned lady exhibits several Parkinson’s and MSA symptoms. She can’t walk on her own; she’s unable to eat, bathe or comb her hair without assistance from a caregiver. Her utterances are barely above a whisper. It’s difficult to be captivating and charming, which she once was, given those limitations.

These two cruel diseases have collaborated to exact a heavy toll on her quality of life. Little humiliations are recurrent and unavoidable.

But she hasn’t given up. She’s a fighter.

The lady belongs to a Parkinson’s support group I attend. We’ve both had Parkinson’s for about five years but, because of her added complications with MSA, her symptoms are more severe than mine.

A few weeks back I was asked to lead the support group because our skilled facilitators were out of town. I decided to ask each of the 22 attendees to share the biggest challenge they face with Parkinson’s — and describe how they deal with it.

The discussion was eye-opening. Though I sometimes feel I know all there is to know about Parkinson’s — my father had the disease for a decade before I was diagnosed — I don’t! I came away from the meeting with much to chew on.

Though the disease wreaks physical havoc on the body, much of its damage is mental. We sufferers painstakingly monitor the disease as it advances through our bodies and diminishes our physical abilities. We obsess over creeping dysfunction. The disease can be psychologically devastating.

Though the world doesn’t seem to care or remember, the abovementioned lady vividly recalls who she once was.

During the support group meeting she assured us that she had once been a professional who took pride in her work and had a passion for her life’s calling: teaching. She was vibrant, erudite and respected. She remembers that she brimmed with confidence and felt valued as a human being.

That’s all changed. Because of her physical condition, she feels anxious, lonely and ignored. She grieves over her losses. People who encounter her in public avoid eye contact.

It’s as if she doesn’t exist.

The woman isn’t being narcissistic. She just wants what we all long for: acknowledgment. She remains a gifted person who wishes to be seen as such by others.

When she finished speaking at the meeting you could hear a pin drop. I felt sad and personally convicted. I’d had no idea she felt that way. That speaks volumes about my personal levels of sensitivity and compassion.

Previously, it’d seemed obvious to me that she was an exceptional human being, yet I probably never overtly communicated that to her.

How many people like her cross my path daily whom I fail to acknowledge? How many do I unintentionally disparage with my indifference?

Lots of people are hurting. I think we’re each called to lift another’s spirits when we can.

I have some soul-searching to do.

JIM CARNETT lives in Costa Mesa. His column runs Wednesdays.

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