Myasthenia Gravis: Flagging Smiles

myasthenia gravis story
To say I immediately understood what Myasthenia Gravis meant, would be a lie.
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My stomach growls as the needle in my arm vibrates and my eyes track the erratic line of my breathing on the monitor. A few squeezes of the foam ball in my left hand and needle relaxes against my skin. With an intake of breath, I intently watch the line on the monitor rise before diving into a flat line. A few seconds pass before the machine lets out a high pitched wail and the breath I was holding rushes back out of my nostrils; my eyes still tracking the progress on the monitor. Not the most mature idea, but after sitting in the same position for two hours with only the constant tug of needles in your arms to remind you of how much time has passed, you get creative. A second growl echoes up from my stomach and my eyes tear away from the monitor to see if anyone noticed the ever increasing noise. The patient across from me is asleep with her head resting against the arm of her chair. Her machine is beeping steadily beside her in what would have been a lulling rhythm, if it hadn’t been obnoxious. Around the room other patients are in similar states of unconsciousness and it seems I’m the only one unable to nod off. Of course that just means I’ll be vomiting up my nonexistent lunch fifteen minutes after my session. With another sigh my eyes return to the monitors on my right, and resist the urge to ask how much longer we have. Plasmapheresis always crawls by.

Five years prior I was sitting in the backseat of a small white Honda on my way up to Meredith, New Hampshire where my best friend’s grandparents owned a cottage. It was a hot July afternoon, and the heat was making the effort to remain entertained into a heroic challenge. We were playing a fast paced game of war with a deck of cheap ninety-nine cent cards that felt waxy and thin against our fingers. The kind you pick up outside the checkout of a supermarket on impulse. I remember my hold on my queens and aces turning slack and precarious. By my fifth loss I had brushed it aside with a laugh and shouted out “I’m nuking this war!” before letting my hand flutter across the seat. Five months later when my tongue felt as if it were wallowing in molasses and my words were tumbling from my lips in an incomprehensible cluster, those cards would come back to memory with a shocking clarity.

To say I immediately understood what Myasthenia Gravis meant, would be a lie. Doctors were crowding into my room with shuffling feet and staring eyes with every rotation of the clock. Using phrases that sounded more like riddles than actual sense. I felt as if I had fallen down the rabbit hole and the white queen was storming in to demand I paint the roses; as Lewis Carroll once wrote “we’re all mad here”. By the time I left the hospital I did understand a few things. Three days a week I would be stuck with needles like a pincushion to filter my blood. Then in a few months my chest would be split open to take out the Thymus gland I no longer needed. Leaving a scar running from the hollow of my throat, down the valley of my breasts like a zipper. I was weak, scared, and in pain but most of all I was angry.

I didn’t care to know my disease. It was a stranger in my body possessing my muscles and driving out every dream I had held dear. The farther I distanced myself from it, the less realistic it became. The more I refused to take my medication, the more in control I felt. No one knew behind my flagging smile and drooping eyelids was the urge to scream out and flee. I wanted nothing more than to run and never stop. I was still falling down that rabbit hole, with legs and arms flailing when I suddenly hit the bottom on another warm July day.

The window beside my bed was open, letting the breeze lazily push the curtain in and out with a soft flutter. My shoulders ached thoroughly from the tremors that were quaking up from my feet to settle deeply in my joints. As I reached up to close my window I paused to watch my fingers tremble, before resting them against the window and using my weight to close it. I waited to warm as the breeze was locked outside.  When minutes passed and my trembling only increased, I shuffled my way into my mother’s room to the sound of my teeth chattering. Within seconds of seeing me, her nursing instincts kicked in, and I soon found a thermometer resting beneath my tongue. A sharp reading of one hundred and three had my mother running around the house with a phone to one ear, and a bag in her hands. Packing the essentials for another hospital trip.

Just a month before I had “luckily” been given a central line. It was great since I wouldn’t have to be stuck with a needle three times a week. Unfortunately, it had become infected, and I became septic. Lying in a hospital bed, I suddenly found myself unable to breath. My temperature shot up to one hundred and six, and my heart rate was out of control. Alarms screamed out around me, and my voice screamed with them. I was terrified. Positive I was going to die, I confessed to my mother everything I had ever done wrong. I pleaded for forgiveness from anyone that would listen. I pleaded with the doctors not to let me die. My last memory is of a nameless doctor hovering over me, promising me that I wouldn’t die.

I dreamed that day. Not of heaven, but of people I had known, and things I had done. It was fast paced and menacing, but throughout it all one thing kept racing through my mind. It’s not too late. It may sound cliche, and a little bit Hallmark, but it’s true. 

When I awoke I was covered in IV’s and too tired to fully open my eyes. I was in the hospital for over a week. Fighting infection, and trying to keep food down. Eventually though, I was allowed home with more scars for reminders. These; however, I didn’t mind so much. This had been my wake up call. I couldn’t wallow and be angry with what life had handed me, because it could just as easily be taken away.

My scars may not always make me happy, but they remind me that I’m still alive and I’ve been through trying times only to pull through.  If I can walk around today with these reminders, then I can walk through a lot more. My friends call me an optimist, and I tend to agree. As I open my eyes I once again take stock of the dialysis room, and spot my Pharisees nurse moving towards me. Trying to sit up straighter, I manage a small smile as she sits on the small stool by my chair. “I heard your plasmapheresis session was a little rougher than usual, and I thought you could use this.” she says smiling, and hands me a large lollipop. With a genuine smile, I know this too I can walk through.

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