Finders Keepers, Losers Keepers

As seen from the cooling shade of a beach umbrella, the young couple jogging by looked light, lithe and invincible.

"Everything I used to be," Penny muttered, and held a glass of iced tropical punch to her throat. Why on earth had she ever agreed to this stupid Hawaiian vacation? "I thought I could do it, I really did. I used to love coming here, but now look at me."

She glared at the joggers' muscular backsides as they continued on down the beach.

"No," she thought, "look at them. Look at what I used to be. Look at everything I've lost."

Penny's gloom is no surprise. We've all been there. Just when we think we've got the whole coping thing down - BAM! MG throws us another curve ball, and once again we're faced with the difference between life as it used to be and life as it is now. Our first reaction often is to experience that difference as exquisite loss. But is it loss? Or is it just difference?

"Not loss?" I hear you saying, "You gotta be nuts!"

Well, that depends on how you look at it.

Harken back to the days of your algebra class. "A-B = C." Sound familiar? In this case, A = what Penny used to be able to do, B = what MG no longer allows her to do, and C = the Penny of today.

All an Illusion

Another, more concrete example. Take a look at the photograph that accompanies these words, and know that I am perhaps the least photographed human in the whole Western Hemisphere. In other words, the image you see (which, even though it was taken about five lifetimes ago, truly is the most recent photograph of me) is of some stranger who no longer exists. It's all an illusion. Kind of like when you're looking at the stars, only it takes so long for their images to reach you that you don't even know if they're still there. Or, in algebraic terms, A = a non-existent total stranger who, in spite of MG, still has Oomph! to spare; B = the Oomph!; and C = the me of today - a good-hearted, myasthenic lump.

Penny and I illustrate a truth peculiar to anyone dealing with our kind of disease, and that truth has to do with language. Be it suddenly or gradually, words like "strength" and "stamina" have left our language and joined the realm of long unused and not terribly relevant tongues. Like Latin or Middle English.

The Only Catch

One of the glories of any language, however, is that as long as the folks who speak it are still hanging around, their language will stay alive, too. The only catch is that it won't be the same language because as the people's lives change, so must their words. Any word that has lost relevancy will be replaced with a newer one reflecting life as it is now lived. And this is precisely what is happening to each and all of us. Changes in our bodies are bringing new words into our lives. Words like:

WATCHING: When MG strikes, many of us cease being Big Stars and become supporting players. What fun! It's amazing how much we can learn once we're freed to focus on the play as a whole, and not just our role in it. It is no coincidence it's been called The Human Comedy.

LISTENING: Ah, the range of meaning and innuendo that used to be lost on us! Now, because we need to carefully measure what we ask our vocal cords to do, we are forced to spend more time listening. And not just to people. Bit by bit, very gradually we can learn to truly hear the leaves, the breeze, the river circling by.

REFLECTION: Allowing the meaning of things to saturate us, instead of busy-ing ourselves into a falsely comforting cocoon of ignorance. We myasthenics only have so much energy to invest in anything, so sooner or later we're bound to figure out what matters and what doesn't.

COMPASSION: Entering into a fuller spectrum of humankind's lot, as opposed to hiding in ridiculous notions of separateness and unbeatableness. It's astonishing how many people honestly think they can totally control not only their own fates, but the fates of others, too. You and I know better. We've learned the hard way.

FINDING OUR FAITH: Well, ...actually it finds us.

Now, please don't get me wrong. I'm not saying that some of us haven't lost a great deal, because indeed some of us have. And certainly singing and jogging and all that stuff were super- fun things to do. But how much would they have supported us when we slammed into the inevitable bumps on the road of life?

Plain Truth

The plain truth is that (a) A and B no longer exist and (b) until a cure comes along, C is the only reality we've got.

It could be a lot worse, though. The C we've been left with might have been meaningless but B, and this is the point - it isn't! True, we have fewer distractions, and fewer distractions mean greater focus. In other words, with the disappearance of A and B, the C we end up with turns out to be a larger and deeper experience than we ever bargained for. Do the gods love irony, or what?

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.


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