The Two Go Together: Cope and Hope

"Harder!" Julianna squeezed her eyes tighter. "I've got to fight harder!" Sweat prickled as she fought to keep her head upright. How would she ever conquer this MG is she couldn't even hold her stupid head up?           

All her life Julianna had believed the story about "The Little Engine That Could" but nowadays no matter how hard she tried, all she did was fail. Sure enough, her head fell forward with a yank at the base of her neck.

"I thought I could, I thought I could," she thought darkly. "I'll beat this disease if it's the last thing I do!"

Mercy, talk about picking up the heaviest rock around and strapping it to your back. Fighting a known enemy is hard enough, but fighting one of both unknown origin and unpredictable behavior has got to consume enormous amounts of energy. Valiant Julianna has a lot more energy to spare than this writer does.          

The last time you and I got together we explored the miracle of hope and how valuable it is in dealing with a chronic disease but we have another tool that's at least as effective. Today, I'll be singing the praises of acceptance.

Think John Wayne

Think back. Think way back. Get down and dig around in all those fuzzy, long-ago images that shaped how you think today. You know what I'm talking about…think John Wayne.

Many of us came of age under the hulking shadow of The Duke. This steely man of few words and fewer feelings taught us that real men and women don't snivel. Real men and women take charge of their destiny. They fix their icy gaze on the enemy's beady little eyes and then grind him to muck through sheer power of character. And any red-blooded American who doesn't do this is a wimp not entitled to tread the dusty boardwalks of Main Street.

Well, folks, I guess that makes me a wimp. Worse yet, I am a wholly unrepentant wimp, shamelessly comfortable in my total lack of Dukeness.

Such perfected wimp hood didn't happen overnight, mind you. No, siree! In the beginning, when I was first diagnosed with MG, I powered full-tilt into truly awesome Duke mode. Overnight, I became this female John Wayne lumbering across the barren desolation known as myasthenia gravis, daring any new symptom to show its cowardly face. I'd show 'em! I'd whip this thing! Never mind the laws of nature, through sheer strength of will I would restore my body to the perfection to which it was fully entitled. The Duke would've been proud.

Secret Fantasy

Five years later all I'd done wrong was pour every exhausted smidgeon of energy into a self-imposed war and then blamed myself when nothing happened. I hadn't gotten better, I'd just gotten tired. Reeeally tired. The Duke would've been disgusted. Then one day I woke up and thought the thought that changed my life.

My cup is not half empty. My cup isn't half full. My cup isn't half anything. It's just my cup.

I have a secret fantasy. I imagine a world electrified by my passionate brown-black eyes and eagle-sharp vision. The sad truth, of course, is I'm a near-sighted, blue-eyed lady who either wears her glasses or squints a lot. What to do?

I could always resign myself to the situation and slouch around waiting for somebody to come up with a cure for blue-eyed myopia. Trouble is, I'm not humble enough to be resigned, to put my future in the hands of some external force that will magically erase this problem from my life. That kind of passivity defines me as powerless and I refuse to allow this.

&Or I could get some tinted contacts and spend my days seeking out low-life weasels to stare down. Don't think I haven't considered it, but I'm too big a wimp. Besides, holding myself personally responsible for "beating this thing" would only add guilt and frustration to the psychological load I'm already carrying. All I'd end up being is pooped.

Living With It

This dilemma has forced me to change the question from either, "When will somebody cure me? or, "How can I conquer this thing?" to, "How can I live with it?" The answer has turned to be easier to live with than it is to explain.

I accept that I am myasthenic. Once upon a time I wasn't and maybe once upon a time I won't be, but right now I am. All that matters is that I try my best.

Trying my best. This, my friends, is acceptance.

The moment I understood this, my body relaxed. I stopped being afraid of my own impotence, stopped feeling personally defeated. I also stopped blaming myself for muscles that wouldn't work right. Thus, I learned the difference between resignation and acceptance. Resignation feels loss and is destroyed. Acceptance feels loss but is not destroyed.

What is, is.

Precious Energy

Look around. When was the last time you met any one who wasn't coping with something? No one gets out of this life without some serious loss or grief. MG just happens to be our particular grief. We can spend our precious energy focusing on an unseen enemy, or we can live as fully as possible within the limitations of the hand that's been dealt us.

So even though I risk the wrath of The Duke, himself, I'd like to offer you and Julianna the option of feeling neither gloom nor guilt for your condition. That stout Little Engine That Could definitely did climb his mountain, but wouldn't going around it make a lot more sense?

Take it from a blue-eyed myasthenic, accepting life's limitations is a whole lot easier than either being passively miserable or duking it out with the universe.

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.