Hope Springs Internal

The TV commercial started and Jim grabbed for the remote - too late. Three luscious women, clad only in barely-legal wet bikinis and clutching bright, shiny cans of cola, loped languidly toward him, sneering their contempt into the camera.

Jim clicked the TV dead and smashed the remote to the floor. Every time he tried to escape this lousy myasthenic world of his, life did nothing but taunt him. Everyone else had energy. Everyone else had strength. Everyone else had a glorious today and an even better future. Everyone else had - hope.

"And what've I got?" he spat out, "myasthenia gravis!"

In the market for a sure-fire recipe for hopelessness? Well, look no further. Here's a guy who's hell-bent on making sure his life is a failure.

Actually, being a successful myasthenic is pretty simple. It boils down to a simple division of labor: (a) We leave the business of finding a cure to those white-coated saints beavering away in their laboratories while, (b) we actively nourish our own healthy outlook.

Hope Isn't Wishing

One of the easiest and most effective ways to nourish that outlook is to hope. The tricky part comes when it's the very last thing we're feeling. That's when it's especially important not to confuse it with its impersonators.

For starters, hope isn't wishing. Wishing is strictly Tinkerbell and birthday candles - lots of fun but not all that connected to real life. You know you've been wishing by that inevitable back-to-earth "thud," which is not lots of fun. Example: I sure wish I were in remission. I'm not. Thud.

Hope isn't pretending, either. Like wishing, pretending involves fantasy, but at least when we make a wish we aren't trying to kid ourselves. Wishes are make-believe and we know it. With pretending, however, the whole purpose is to fool ourselves.

This is a really dumb thing to do. For instance, If I pretend I'm in remission, what will happen? Chances are I'll stumble into the furniture, dribble my dinner, foul up my medication schedule, and confuse everyone around me so much they end up ignoring my future pleas for understanding and support.

How about positive thinking? Definitely a move in the right direction. Wishing sidesteps the notion of our being able to influence our own lives and pretending temporarily abdicates that power, but positive thinking sets about to actively reclaim it. It isn't hope, but it's still darned good.

Blind Faith

And then there's faith. I'm not talking about religious faith here. That's a whole different ballgame. I'm talking about the blind faith that one day you and I will suddenly wake up in the same healthy, vibrant state of those women in the TV commercial.

All right, I'll confess it, I really like faith! I know it has absolutely nothing to do with the real world but it just feels so darn good. I especially love the steadiness it gives during turmoil and doubt. Nonetheless, I do try not to indulge in too much blind faith because something tells me Pollyanna didn't grow up to be a happy old lady. Why? She didn't temper her faith with knowledge.

Knowledge is like a hiker's walking stick. It's that third leg that keeps us balanced when we're about to slip into illusion or despair. The only drawback with knowledge is that it's so limited to facts. Even after shamelessly gorging ourselves on knowledge, all too often we're left hungry for meaning. Hope never leaves us hungry.

Expectation is one of hope's sneakiest impersonators. Expectation plays the percentages. Expect the sun to rise tomorrow morning and you'll be right. Expect to wake up cured and ... well, you may not want to bet the farm quite yet. It's all in the percentages.

In the end, hope is really strange stuff. It's this weird mixture of all the above coping mechanisms and theoretically has absolutely no business succeeding - yet somehow it does! How can this be?

Hope isn't at odds with reality. Hope keeps both eyes open. Hope welcomes the facts but, unlike knowledge, doesn't stop there. And hope couldn't care less about the percentages.

It's Up to Us

It's all up to us. If we want to keep hope springing eternal, we need to ruthlessly monitor our feelings. Expectation, for example, can tempt us to recklessness. Too much knowledge can breed arrogance. Wishing and pretending can become escapism, and positive thinking can degenerate into manipulation.

None of this happens with hope. When you hope, there is a sweet feeling of humility, a yielding anticipation that fulfillment can and will be made possible by forces outside ourselves.

To hope is to step out of "today" and into the "possible" - without demanding that the possible happen today.

The only downside to hope that not everyone understands it. Certainly Jim doesn't! But then, who wants to end up like him?

(Editor's Note: All of which points up the slogan of the Myasthenia Gravis Foundation: WE OFFER HOPE AS WELL AS HELP. Hope and help - a worthy, working combination!)

The Successful Myasthenic

For many years, Patricia Armstrong was well known to readers of MG News for her upbeat columns pertaining to coping with the idiosyncrasies of having myasthenia gravis. During the thirty-seven years since diagnosis, Patricia has worked hard to find her balance in life despite her generalized symptoms. It wasn’t easy; a former husband would never get the Nobel Prize for compassion since he was embarrassed and irritated by her condition.

Learning to make the necessary adjustments that MG requires, changing her dreams and setting new boundaries has made Patricia, in her own words, “one strong cookie.” Patricia has parlayed her unique MG experiences and those of other myasthenics into entertaining and interesting vignettes which strive to help others deal with life after a diagnosis of MG.


©2024 Myasthenia Gravis Foundation of California.