CRPS Arachnoiditis and Me

Someone asked what my pain is like. I paused and wondered how to fill a universe of thoughts into the tip of a pen. 

I rarely go into the how or why. every life challenge has similar phases we go through, much like the process of acceptance of death. 

I am a wife and a mother of four two-legged people and three four-legged people and had a pretty cool career as a destination photographer. My success was mostly based on a fluke - I happened to shoot my very first wedding on a Saturday that had a celebrity attached who happened to ask me to send a few favorites to him that night which he liked who happened to be going on Martha Stewart Living on Tuesday. Big breath. Martha Stewart then showed my images on air and talked about them too. That's a fluke. I came. I shot. I was conquered. 

On October 28th, 2011 I was unloading groceries from the back of my car and pushed the button for the tailgate to close which was inside of the interior of the trunk, bent down to pick up my last bag of groceries, stood up swiftly but just as I always had and at no more than a quarter of the way up with bent knees, the corner of the electric powered tailgate jammed into my left temple and stopped it in its tracks. ER. Tylenol. Home. 

As time passed I kept expecting to heal, but the pain only worsened with every treatment I tried. A surgeon then showed me on X-ray that the natural curvature of my neck was literally inverted, a disc in my lumbar spine had blown, but could not account for the mind-bending pain beyond what you'd expect to see, as well as the paralysis seeping into my limbs. Thirty surgeries and surgical procedures later, I was finally diagnosed with CRPS as well as Arachnoiditis exacerbated by CRPS. Both of these are officially listed as the most painful conditions in the world. Worse than childbirth. Worse than phantom limb. 

CRPS is a neurological disease that develops from a surgery or injury that causes pain signals to malfunction. Signals that would normally end only increase and intensify to the point of hospitalization. Mine is in my spine. 

Arachnoiditis is caused by any puncture or irritation to the spinal canal. It is the scarring of the nerves within the dura that gradually harden turning the nerves into plague. 

Neither are curable. 

A blessing is there are windows between the flares which last from weeks to months to years. Within a flare are episodes which occur every 10-20 minutes like clockwork, just like the pattern of labor contractions, only these occur around the clock. At the peak of a flare, hospitalization is the only option, my shortest has been a week. Each episode begins with a simmering haze of a flame that stirs in the middle spine. I will brace my fingers into my chair until they resemble an election map.  The flame begins to expand and swirl throughout the trunk like a warm bath your mother made but just a bit too hot. It is then a wrench makes its way from within the vertebral bones,  as though trying to split a log. Cue the lumberjack shirt, and a blowtorch now turned to high - but takes its time like a lover's hand. A child's head begins to crown between the discs. Flash to the lumbar spine about to crown. 10mm - we're almost there but without an angel at the other end. Its shoulders breech through the spinal cord, your body flails to get away from itself. A primal wale announces your humanity as you return to a fetal state as butcher knives slowly grind into your thighs, shoving along the grain of bone to remove all evidence that you were there. The legs begin to shutter like a hummingbird's wings without a flower from which to drink. It is now your legs have a life of their own The body shudders from its core whispering its mantra  "Go away, go away go away" as though the slightest chance of being heard might just make it all go away. 
Three minutes you delve into a place so dark it lies between the light. A fading of the scene into the eye of the storm. Soon it will all begin again. 

I'm just gradually rising from a chain of flares that lasted seven months. For now I sit in wait. A move to the wrong right can send me down the rabbit hole again with the Cheshire Cat to offer some tea. 

This is my reality. 

But it is not who I am. 

I am not the fire. I am not the butcher knife that burns through my bones. I am not the vice that wrenches my spine.  I am not the pain. I am not that kind of flame. I am solid white. Not because I am pure. I am a canvas for everything I have to learn and never dreamed I could become. I have discovered the power of the human spirit. Its thirst for life so strong it could run the rivers dry. I hang my head in shame at the mere thought of assuming what is pain. 

Someone asked me how I stay positive. I don't. Every day there's something that makes me question God. Then something else assures me He is there. I feel guilty every time. But there are also  blessings revealed each day that unwrap a gift that gives me pause. A gift of time with my children, a moment with a butterfly I would have never noticed before, or a conversation with someone else that assures me that I am not alone. 

I am a canvas, strong enough to hold the image of what I am yet to be. A life that wanted so badly to fly and earn her  wings. 

One day this painting will be completed and framed with the strokes of what my life will be.  But this time I will stand from afar to see a beautiful image I was once too close to see. 

Comments

[Victoria]

I am beyond sorry you have to endure pain that few have, and pray this relief you are experiencing lasts.
I am struck by 2 things, first your beauty, in words, in your heart, and your willingness to share this experience.
Thank you for sharing such raw, and intimate details of this journey.You are beautiful inside and out.

[Fried Nerves and Jam]

Victoria thank you so much for taking the time to visit. Sharing truly is Like oxygen. It offers a method not only to breathe but to find the sweetness in something that pretty much stings. Without the writing process I don't think I'd be able to come to a favorable conclusion 😜