How quicksand, elephants, and sirens relate to living with MG
This metaphor can help explain what myasthenia gravis feels like
Close your eyes and imagine that you’re in a diving suit, swimming in a warm and comfortable lagoon. You find yourself drawn into the depths of the beautiful teal water by a siren. At first you don’t realize how far you are from the surface; you’re too enamored by the siren’s captivating song. You allow yourself to be pulled deeper and deeper.
Soon, the pressure starts to compress your ribs, making it difficult to breathe. You try to kick your legs so you can return to the surface, but find they’re stuck in quicksand. Just the act of moving your legs back and forth or up and down requires immense energy at a level you can’t sustain. It feels senseless and futile.
You try to take a deep breath, only to realize you can’t. The pressure around your rib cage feels like an elephant sitting on your chest, not allowing for any movement at all.
You look up to the surface of the lagoon, the place where you were just existing in comfort, and discover you can’t see the way out clearly. The water has become muddied. Every physical object suddenly has a shadow that shouldn’t be there. You start looking all around, trying to find a way out of this underwater cave that feels like it’s closing in around you.
You’re in a downward spiral, and you don’t know which way is up. The lifeline that was attached to your diving suit just leads you back to the siren that dragged you down to the murky depths to begin with. You feel alone in this place, which no one can understand unless they’ve been here, too.
Panic sets in because you can’t breathe, you can’t see, you can’t move, and you feel lost and alone.
And that’s what living with myasthenia gravis (MG) feels like.
A glimpse of my everyday life with MG
The siren, a mythological creature that’s often confused with mermaids, was believed to lure sailors to the depths of the ocean (death) with their songs. For someone with MG, the siren can represent life in general. The idea that we can live a normal life with MG is the ever-elusive song that many of us chase.
There are enough accounts of real people with MG who have received certain treatments and are able to live a relatively normal life that this lure can seem like an idea worth chasing in the minds of the newly diagnosed. I know it was for me. I’d look at my new friends with MG, see their success with treatment, and yearn for that outcome for myself.
Spoiler alert: We’re all different. What worked for them didn’t work for me. The sooner I recognized that, the more I was able to accept that my life would never be the same.
The quicksand and inability to move represent the leg weakness that many of us experience. There are days when the act of picking my foot up, placing it in front of the other, and taking that step feels insurmountable.
The water pressure and elephant represent the air hunger and difficulty breathing that can accompany MG. As I often tell folks who ask about air hunger, the problem isn’t oxygenation, but ventilation. My lungs are fine; the muscles that make my lungs work just decide not to function.
The panic is real and can be debilitating, especially when one is just beginning the journey with MG.
Imagine living with this every single day. Knowing that too many steps, a drink with friends, a hot or humid environment, or just being sick can trigger that siren to pull you down into the quicksand where the elephant waits to sit on your chest.
That’s why I do all I can to make the most of the good days and to make sure there’s more good ones than bad.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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Sandi Uram
Great article, I can relate. The other night I was exciting my shower and I slipped and fell backwards. This was at 11:45pm. I hit my head on the back on my shower safety bar. My head went bong, bong, bong!
I thought yikes what did I break! There as no blood so I figured that was good. I attempted to get up but my legs and arms didn’t work.
They were like sand bags. I had never had this happen before. Usually it is my legs that are weak. I was finally able to reach a towel and I put it under my butt and legs, a little at a time. It was a large towel so I was able to also put it over the shower riser on the bottom of the shower. It took about an hour to manage this feat. I slowly pulled on the towel a little at a time and was then able to get over the riser onto the bathroom shower floor. It took a long time to scoot out of the shower . I then turned my body so that I could crawl and after tryiing over and over again I pulled my body up into a chair in the bedroom.
This event was a wake up call for me. I now realize I should have taken another Mestinon pill if I was going to stay up so late. Also I should have put my phone closer to the floor so that I could reach it.
I am now planning on having a new shower put in without a riser on the bottom. It is my hope that it will be a walk-in shower large enough for a wheelchair if needed . I survived with just bruises but I was lucky this time.