8:04pm September 1, 2014

After Dancing With Death: written by Carolyn

Life always gets good again. No matter how bad anything gets, it will be good again. This is a thing I know. Or at least I know it sometimes… usually during the good times, of course. When I am only so far into the dark of the tunnels that I can still see the light I’ve just come from, I believe with all my heart- because of the good I’ve known- that there will be light again, another end. So I march bravely in, because the only way out is through and there is no stopping and staying in living.

After so long in the dark I can’t remember what light feels like anymore, and can’t recall what ever made me think all tunnels have to end eventually… why couldn’t it go on forever? Or why couldn’t it go on two, three, four, twelve years? Which is practically forever in such dark.

There are blazes in life of such color, such light and clarity, and then there is this…. This scene. It comes and goes and then comes back again and stays a while. Every cell of me remembers it.

It is summer, and the windows are open in the house. It’s hot out, and my room is sticky with the summer humidity, my bed sheets damp with sweat and there I am, pressed between two heating pads. There are the warnings on those things- caution, don’t lay on them, low settings, they’ll burn. But the burn is surface, and the pain is deep, so I lie with one heating pad under my back, the other on top of me across my abdomen, held tight against my skin by the bandages of bed sheets I’ve wound around myself. My skin is visibly searing, trailing brown burns, but the pain of the burn is subordinate to the other pain its heat can begin to soothe, and I don’t care how much skin I mottle up to reach it. I am feverish, and I can’t lie down. I can’t recall what it feels like to rest comfortably, because when I lay down my insides move like a boiling tar pit, so I stay propped at a sitting incline. I haven’t lain down in months. There are pillows tucked under my sides to support digestion. Without them, gravity is merciless, pulling everything inside me like a magnet to the bleeding, swollen tissues, taunting the angry raging thing in my DNA. I am sweating, shivering and shaking around the pit of my insides, burning my skin to push the heat deep enough. For months I slept this way, rested during the day this way- and by sleep and rest, I mean I writhed myself into waves of catatonia as best I could this way.

All the warm days in a year were shrunken to this scene and sounds of life outside a window. The neighbor kids laughed on their trampoline. The bouncing springs sound like and MRI machine, the thought of laughing makes my intestines ruthlessly seize, and the thought of not laughing has me crying myself into my next catatonia. I have always loved the smell of fresh mown grass, but the sound of lawn-mowers all summer makes my insides scream. The intestines become a thinking thing, filtering the entire world through their perception in a screaming match with the head and heart, until mind and soul decide the best way to respond to the screaming is to go silent and ride it out. Every nerve goes cross-eyed either gaping or diverting its gaze from what my intestines are doing, bleeding, burning, screaming, leaking, writhing, eating away like a pit of maggots, and my whole body goes crosswired around the scene.

And how do you tell this to a thirteen year old girl who goes to dance classes and school dances, who plays basketball, wears watermelon lip gloss and half-heart necklaces with her friends, whose best birthday was spent dressed up as Sporty Spice in her basement singing Stop right now, thank you very much, I need somebody with a human touch while her sister flipped the light switch on and off for a strobe like effect? How do you tell this girl her future?

Like an ominous spread of tarot cards and a bad reader who tells only what will make the client pay better. There is the Devil, the burning Tower, the Hermit, the Five of Pentacles, the Eight, Nine, Ten of Swords, and Death. They see it all there in the tests and x-rays… body bound, friends gone, money stolen, poison and blood and bones. They see it all in the pictures of her twisting intestines.

But this girl sits on their examining table in a Tinkerbell t-shirt, tennis shoes, and flower-embroidered bell bottom jeans hanging off her pale ninety-pound body, and her eyes are innocent still, so they say, “There’s no cure, but you’ll just take some pills and be okay. It shouldn’t affect life too much.” Because in medical training they teach the tests, but there is not a course on tactfully crushing the souls of thirteen-year-old girls with glitter on their eyelids.

So fast forward to the scene. The one with all the burning and blood, pain and writhing. This is what the cards look like with severe chronic Crohn’s Disease. That’s the diagnosis. This is what they see in the tests and they say “It shouldn’t affect life too much.”

They see this and sort of look at you sadly, and send you on your way into the dark of the tunnel- so dark it matches the inside of your body and there’s nothing to shine off glittered eyes. And how do you tell anyone they’ll have to walk a path so dark they forget the light, forget so completely what it’s like to feel safe that even the word is confusing? And when you’re alone in such dark, you’ll have to be the one to comfort those outside in the light who fear your darkness. You’ll have to be the one to say Maybe a better day tomorrow, while everyone can see the shape of your bones, and under your shirt everything is burned up below the ribcage, and no one even knows how much blood you lost that day. You’ll have to dig up a little smile from somewhere and say, “I’m fine,” so the people around you won’t divert themselves from you just as all your own cells do.

But someday in the tunnel you understand they didn’t tell you because they just don’t know. They haven’t been into that dark, only stood in the ominous grey veiled corridor right at the beginning and watched you walk off where they can’t follow. They don’t know what the dark does to you, don’t know what monsters are in there, and they haven’t seen the other side. They don’t know the light there any more than they know the thick depths of that darkness. There are moments of remission, places where brilliant light shines through just when you stop believing light was ever a real thing for you. These are the other parts in my cards. This is why I choose to keep walking my tunnels.

When all hope seems lost, you see the Star. In the absence of sight, the Star lights your way. Its light is not a blinding flash like the lightning bolt of the burning Tower, but a soft radiating glow that warms and comforts, rather than burning and destroying. (You remember that both of these energies ultimately come from the same place). When you cannot help yourself, the Star tells you to look to the heavens for guidance- or, more appropriately, look to the spark of divinity that lies within yourself that you couldn’t see before. Each of us has a little piece of the Star deep inside.

After the purging experience of Death, it is necessary to rebuild and improve the pieces that are left. Your previous life is gone forever, and new attitudes must be formed to fill the gaps and make you whole again. This reconstruction and harmonization is the card called Temperance. The verb “to temper” means to modify or strengthen

by adding a new component. This is the creation of a centered and well-rounded being. We see that the Death card is not the end. It represents overcoming deepest fears and great unknowns. It is transformation.

Then there is Strength with her lion. People tend to think of strength as a property of the physical body, but strength is not always measured in how much you can lift or how fast you can run. True Strength is fortitude of character. Her qualities are courage and patience. She needs patience to defeat the lion because her power is not brute physical force, but it can be applied infinitely, and she will continue to apply light but constant pressure until the lion submits to her superior will, just as a constant dripping hollows a stone. Such quiet yet unstoppable power radiates from the soul, and for a consciousness aware of this, there can be no defeat.

I wandered the tunnels as the Queen of Swords, her stoicism a sign that she has allowed painful experiences to become learning experiences. She learns a little from everything she does, and hones it into exquisite perception and insight. The intuitive quality allows her to see straight to the heart of anything, past all illusion.

I follow the Star and become the Magician. His power is transformation through the use of his will. He shows us that from a foundation of the mundane can emerge all that is to come. He takes the Nothing from which the Fool emerged and shapes it into Something, making one out of zero.

And I embody the Priestess. She is the manifestation of the unconscious and the effects of the mysterious in our everyday world. Understanding the balance between potential and creation is the key to unlocking some of her mysteries. The Priestess balances opposites. She herself is the scales. She acts as a guide to those willing to venture deep within their mind to discover the powers hidden inside. She is the unlimited potential that is the source of the power wielded by the Magician, directed inwards to enrich and transform the Self.

After every obstacle has been faced and surmounted, the path travelled and charted, there remains only the World. After the union of the conscious and unconscious, the mind and the body, all that can remain is union with the Divine in whatever form it appears to you. This journey is over and the next is only beginning. The cycle is complete as last, with the vindication of the traveler through development of the self.

So life always gets good again. It seeks balance. Rarely does it rest in that perfect place between extremes, but as the pendulum swings so far one direction, it will swing justly as far again the opposite, in this way forever balanced in motion.

After dancing with Death in a dark so deep I forget the light, I’m delivered finally to sunrise screaming with tears down my face. I dry my eyes, enamored at how everything shines, and every step is magic and new.

-referenced www.ata-tarot.com/resource/cards

-images assembled from the Rider-Waite Tarot

Wow. That was… really, really impressive as a description of some of my hospital experiences, among other things. With completely different diseases (bronchiectasis, pneumonia, gastroparesis, adrenal insufficiency, autonomic dysfunction, neuropathy, and myasthenia gravis seem to be the main ones), but still, wow. Nobody ever captures the actual experience of being that sick, that well. The closest I can think of is At the Back of the North Wind by George MacDonald, and that was more metaphorical than this, by far.

Notes: