June is Myasthenia Gravis Awareness month and Mission Nearly Impossible was underway these past few days. What mission is that, you ask? The mission I begrudgingly accepted: Mission - Find Just Me...Crystal D a Swim Suit.
Simple, right? Wrong.
Yes, I have all of those insecurities every other woman over a size 4 has. I have body issues. I'm lumpy in places, rolly in others, and uncomfortable in every area between my elbows to my shoulders, from my neck to my knees. Who thought up these medieval torture contraptions anyway? Whoever you are I loathe you. No one wants to see those lumps, rolls and jiggles. No. One.
I didn't want to frighten small children, including my own. Nor did I want to send beach goers scattering about, clawing at their eyes trying to rid the images of me out of their minds, so this mission was nearly impossible. Sure, I could have gone the easy route, closed my eyes and randomly pointed at a garment and carried it to the check-out line. But alas, I'm not a size small, extra small, or wow she turned sideways and disappeared! So I had to search. High and low. Through every rack in PoDunkVille. Then I moved outward in search party, which included my husband, daughter and I perusing the mall. Our son, he closed his eyes through most of it. I jest, he glued his eyes to the phone in earnest in an effort to close out the images of women searching for their own suits. Some of those women were red faced and nearly bald from pulling her hair out. I think her name rhymed with my own. Maybe it was a homophone? Oh heck, I admit it that was me. Yes, I was frustrated.
A few years back I would have just been looking for a flattering suit. This year, however, there were added stipulations to a suit. Stipulations for Myasthenia Gravis, that is. Most women who feel the least bit jiggly, those who have mom-bods, or have a little extra cushion in places want those miracle suits which take you from a size 12 down to size OMG-I'm-going-to-pass-out-because-I-can't-breathe-but-I-look-so-much-thinner-now. Yes, I remember those suits glaring at me, calling out to me shouting I'll make you look so much nicer Just Me...Crystal D! Remember them hanging right there on the racks, that is. We slowly and methodically grabbed every suit in my size, which ranged from where's the rest of the material? To no way would I be caught dead wearing that All the way to I think my grandma had a suit just like that!
Elimination took much less time, of course. The potential Just Me Crystal D suits journeyed with me into the fun house. You know the place in every women's dressing room across the U.S., I've spoken of them before. They have fun house mirrors in them where the image staring back at you has a look of horror on her face while the rest of the image reflected is stretched out into an unflattering view. I walked in with my arms loaded, as much as MG arms can be loaded of course. I walked out much lighter.
With Myasthenia Gravis we must have the ability to actually pull the suit on, this is not something I ever considered a few years back - I thought the miracle elastic was wonderful. Now, on the other hand, it is my nemesis. I need the ability to not only put the suit on, but I need muscle strength to enjoy the day in that swim suit. I can't have anything constricting my chest which makes breathing harder and can dangerously weaken our diaphragm. Lastly, at the end of the day I need to be able to remove it. Simple for most, not so much for me and my fellow MG sufferers. This affliction changes our whole lives. Myasthenia Gravis steals away simple things, deprives us of life's pleasures, leaches away our energy. It robs us of time.
"It shouldn't be so hard to buy a swimsuit!" Those words, spoken by my best friend, are the truth of the matter. It shouldn't be so hard. Unfortunately it is. This isn't the life I would have chosen for myself, this life with MG I mean. I would love to go back several years ago, where the worst thing I had to worry about in regards to a suit was 'is it flattering?'. Now I need a whole disability swimsuit, I joked while she tried helping from afar. This swimsuit issue is just a reminder of how different things are for people like me, where a seemingly simple task takes three days to accomplish. Yes, it literally took three days to find a swimsuit and at the end of each of those days I was exhausted. I did not walk all over the mall, up and down aisle after aisle because I simply cannot.
Do I wish things were different? Of course I do, but that is not to be and I have accepted this new life. These new limitations can be quite disheartening but I refuse to let MG take over and dominate my whole life. I suck it up and deal with what I must: treatments, dangerous medicines (which children or anyone who plans to reproduce cannot touch), limitations and changes. Because of MG I have learned to: take time to see sunsets in parking lots when I can't get my legs to complete the journey to the car, appreciate the small things in life, breathe in the scent of rain in the air, hear the laughter of my children as they play, delight in the hugs and gentle squeezes received especially when things are shaky. I have also learned to be thankful that I have today. Today with those wonderful kids and my husband my life is imperfectly perfect.
I found a few swimsuit tops to wear. Maybe I won't be comfortable walking out to the beach in my ruffled suit, or the one which flutters about in the ocean's breeze. Maybe I will get a curious glance or two. But I will be proud. I will be grateful. Because I have one more day with them. Those who make the frustrations, the fears, the sleepless nights all worth it. I live for them. I push through with a prayer on my lips and three cheerleaders in my corner encouraging me on, and extended prayer warriors remembering me in their nightly prayers. That mission, it was only nearly impossible. I will continue fighting through each mission!
#IHaveHeardOfMG - have you?
#IAmTheFaceOfMG - I am Just Me...Crystal D. I am a mother. I am a wife. I am a friend. I am the face of Myasthenia Gravis.
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