Here's Rhyme - and Reason

There was an old woman who lived in a shoe,

who had but one child and knew not what to do.

She loved her dear Betsy but lived in a panic

since the doctor told her, "Your girl's myasthenic."

How should she raise Betsy? And where would they go?

The shoe had been built for a family to grow.

The woman lay sleepless at night, tense and scared,

and wished from her heart little Betsy'd been spared.

Oh dear! If it weren't hard enough being a single parent with no visible means of support and being forced to live in some old shoe, her only child has been diagnosed with a disease that puzzles even the experts. Given that this old woman hasn't had a good night's sleep since who knows when, it's only natural she would be overcome with fear. The worst part was that she can't deny what the doctor said. The patters all fit. She knows it is true.

Yes, a lot of things are true and some of those things are lousy, but we can't let them stop us from living as best we can. So the first thing the parent of any myasthenic child needs to do is lock firmly in his or her mind that despite all the fearsome things one hears about MG, life goes on. Granted, it might go on a little differently than we'd hoped, but it will go on.

Unpredictability

For instance, your child may start doing some kind of weird things, like all of a sudden coming up with some really far-out word pronunciations. Or unexpectedly needing way more sleep than is "normal." Or having a grin that's totally out of whack. But that is OK, because with myasthenics unpredictability comes with the territory. It's just a part of the deal. In fact, if a young person is going to get any disease at all, this very unpredictability makes MG one of the best.

"Are you out of your MIND?" howls the old woman from her shoe. "How can you possibly suggest such a thing?"

Pretty easily. Energy-wisely. These character traits will give Betsy a head start on a kind of wisdom usually found in only a handful of grown-ups. Thus, because of childhood myasthenia gravis, she will probably grow up to be a very special woman.

"But what about now?" cries the old woman. "What about today?" How can I be the parent she needs today?"

For that matter, how can anybody be the parent a myasthenic child needs?

Two ways – actually one big way and a bunch of little ways.

The big way is doing what you are already doing: freely giving your deep and abiding love to the brave and wondrous Betsy in your life. That's the easy part.

No Junk Food

The harder part is the day-to-day stuff. Things like making sure your child doesn't get overly tired. Making sure she doesn't go without meals, and that high-quality snacks are always at hand. The last thing Betsy needs is to have to deal with the crash that follow a sugar high. A banana and a glass of milk will usually do the trick. When the weather is hot, make sure she takes it easy. When the weather is cold, ditto. Remind her to slow down when you see her starting to fade, but try not to nag for fear she won't learn to gauge these things herself.

And if her eyelids should droop or her speech get slurry or whatever, don't panic, because if you freak out, so will your child. What's more, she may think she's done something bad, which will make her more uptight, which will make her eyelids droopier, her slurred speech “slurrier,” etc. The whole idea is to keep her breathing calm and regular, her heart and soul serene.

Above all, do not underestimate your child's strengths. After basic survival needs, the first priority in the life of every young person is learning. Your Betsy will constantly amaze you by how she teaches herself to surmount and transcend her limitations.

That's because your little Betsy has it in her to be a winner!

The old woman looked at the problem anew

and acted on what she had wanted to do,

The shoe was repainted, completely remodeled,

and children played freely while small toddlers toddled,

Betsy grew stronger and managed just fine.

She learned when to stop and when to draw a firm line

and not to feel bad if she said a word wrong,

and mom now sleeps soundly through all the night long. 

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.

 

©2020 Myasthenia Gravis Foundation of California.