Monday, March 28, 2011

Big Plans Afoot

I recently watched a show on the Food Network Channel starring Ann Burrel and have decided that if my life hadn't included MS I would have had her 'food life;' hard working, practical kitchen, earthy ingredients, food that looks so good you can smell it through the screen. I imagine a house full of friends, fresh sea food on the grill, a luscious pear torte cooling in the pantry: the pleasant thrumming of a life busily fully lived. Not perfect by any means, but as complex and alluring as Paella with Dungeness and as soul satisfying as Rogue River blue cheese.
My fella and I started together 25 years ago this month. Life was simpler then. A box of Mac n Cheese cost .39¢ and when we were flush we would throw in hamburger, onion, and, sour cream. It seemed like our lives flitted from the next term paper, pay check, or invitation to dinner with little thought beyond the immediacy of that day or moment. Life was full of bits and pieces that blended together into the rich broth that has seasoned the rest of our life together.
Our son graduates from Tulane University in May of '12. Hard to believe that this milestone has come on soft feet into the forefront of our lives. I find myself dreaming of visiting New Orleans and enjoying his life there for a few days next spring. To sit at the neighborhood cafe he described eating sweet potato fries with pecan topping. To see him graduate from college didn't seem possible a few years ago, but now, I can almost reach out and taste it. 
The past few days I've wrestled with an altogether different beast. One of the cards I've drawn in the MS deck is Occipital Neuralgia. If you asked me how I was feeling today, I would use the lay person's term of headache, when what I mean is: on the right side of my head, from the taut tendons in my neck, slowly fanning up and over the scalp before narrowing down to my eye, lives a creature that seems to writhe and slither just beneath my skin. Randomly it bites down on my eye with an ice pick of pain. The sensation is close to the drop at the bottom of the ferris wheel, pit of the stomach, nausea while also being cloying, burning, and electrical. At times, it burns so deeply I think smoke should seep from my hair follicles. Light and sound intensify every sensation. For the first time, motion makes it worse as well.
My big plans? My 'to do' list for the decade, year, hour, or minute? Sitting as quietly and motionlessly as possible. I am downright witchy. Talking on the phone hurts, maybe if I stare at it it won't wring. Maybe if I don't breathe, my headache will go away. Maybe.

Sunday, March 20, 2011

It's Just Been Too Damn Hard

How have two months passed since my last post? Time slithers through my fingers like the memory of dense fog hanging onto the edge of darkened streets. At times, I've felt like I pulled a fold of the earth over my head and made a concealing pocket of cool dirt to hide in. I've watched with disinterest as the worms have burrowed by and the roots have dug deep. I haven't had words or the ambition to write them down. 
My state of being isn't any one event, one root cause, one dramatic whoopsy-daisy that can be circled in red crayon on a calendar. More like the finger of a curious child-giant reached down and flicked off the party lights, blew out the candles, and left me in the twilight. 
I can survive. MS, the old witch, isn't winning this round. I think of her sitting on her bony arse in her mushroom brown lair plotting new recipes for neurological destruction. In her best wicked voice, she challenges me: think you know what pain is my pretty, think you know?
What she doesn't seem to ever learn is what a tough old girl I am. A snippet of scripture often floats through my head on my darkest days, "I know the plans I have for prosper, not to harm." This is what I cling to-not the spiteful strafings and clawed swipes of MS.

What the Dead Tell Us 
about Heaven and Hell
for Sara
Brett Ortler

They explain it in stories. 

In one, there is woman in a garden 
of a ruined plantation where the bricks
of the main house burned
long ago, but the terraces are still tended,
and gardenias grow in groups
of three or four. And a man is with her, and he loves her. 
But it begins to rain, the water is cold on their skin, 
and in that moment he knows he will go north and lose her.
For the first time in his life, he believes in heaven and hell,
not as far-flung countries, but as twin cities, 
with skylines in plain sight of one another,
both borders lined with billboards and bright lights,
and he realizes how hard it is to hear the difference 
between a city full of worship and one full of wailing
and how easy it is travel                                 
from one to the other.