You have taken me on a 43 year journey. You have allowed me the privilege of flying kites, and climbing trees and running through fields of California Golden Poppies. You took my little legs when I was 3 and experiencing snow for the first time, and tumbled through it, and let me experience the cold, and the wet and the fun of a child's first snow with her family.
You allowed me to go backpacking in the backwoods of Yosemite Natonal Park, and walks along the Merced River with my family. Playing Frisbee in the valley, or walking up to a waterfall and you allowed me to feel the spray of water literally dropping off the side of a mountain.
You allowed me to play softball with my friends, and go running in the "I Ran in El Portal" long distance race in the mountains. Your legs took me on paths to backwoods creeks to pick watercress on Thanksgiving mornings with my Daddy. Your arms allowed me to learn to throw shot puts and the discuss for county track meets.
Your back bent backwards and your fingers nimble to allow me the fun and thrill of twirling the baton.
You took me on bike rides with friends and your eyes let me read the most amazing stories that took me to places far away and long ago and even into worlds that exist only in the minds of those of us who can imagine them.
Your arms and hands allowed me the privilege of learning a new language. To speak to those who cannot hear. To express myself through with music, while my arms and hands, fingers dance through the air and say what my voice never could in a million years. Your dexterity and your strength allowed me to learn not only the nuances of another language, but to more fully experience the language that was native to my ears. You allowed me the honor of sitting through church services, and hearing the words of a pastor, and taking those words, and passing them to the tips of your arms and hands and to allow another person to know what the pastor was saying, even though, they could not hear his voice.
Your muscles and tendons,bones worked together to allow me to work with a team of girls to watch a white ball float back and forth over a net. Sometimes it would go gracefully, sometimes with power that was amazing to watch. You allowed me to experience the power of slamming the ball from the serving line ...and the ability to direct it exactly where your eyes intended it to go, but not where the opposing team thought it was going to go. You allowed me to experience diving to the ground, to get your hands, tightly grasped together, under the ball seconds before it hit the ground, to save the team from defeat. Your knees slammed to the ground and your body took the insult, usually an elbow as well, but the ball, was in the air without having hit the ground. I was allowed the hero's cheer while you took the insult of the slam. You allowed me to feel the power of hitting the ball, and the joy of the coordination needed to allow all of it to come together in just the right second.
Your voice allowed me to participate in pep squad and cheering for wrestlers. Loud, strong and carrying well. You could raise your voice without straining your vocal chords, allowing me to participate in such things as speech competitions, dramatic productions and musical performances.
Your ears allowed me the joy of hearing music ...precious music! That has so often spoken to me about what God has been trying to tell my broken soul. It has allowed me to hear the birds sing, the cats meow and my children say "Mama" for the first time!
Your eyes have allowed me to enjoy the majesty of mountains, and the intricacy of the imagination of an artists pen.
You, my body, have allowed me to be pregnant 3 times, and to see 2 of those three to full term. You allowed me the privilege of motherhood. To experience the joy of holding a baby and to hear it's cry and laughter. You have allowed me to see him take his first steps and to hear his goals for his life. You, my body have allowed me all of this.
Things have happened to you that should never happen to a body and you held up, you stood strong and you got me from one day to the next. You allowed me to take get out of bed and take step after step after someone else decided that you were their object of destruction. You allowed me to survive when a piece of my soul had been stolen.
You took charge when my step father died, taking my feet to the phone, and made my hand reach for the phone to call the police. You, allowed me to get out of bed the next day, and the next day, and the next day, until ... it became a habit.
You allowed me to experience the joys and sensations of falling in love the first time and all that entails. When the marriage did not work, again, you got me out of bed, and you took that step and then another.
When again, someone decided that, you were the object of their violent fantasies, you, stood and walked away. You got me up the next day, and the next. You allowed me to continue to work and to continue to talk and to continue to breathe when my soul wanted to disappear.
You were assaulted with the pain of a miscarriage at 20 weeks along. With me knowing it was a girl, you, my body, got me through it. You, in spite of the pain, got me to a point where I could stand again, and look at the sun ...and again, got me out of bed and day after day until it was a habit.
When I was 24, your own immune system decided to turn on you, attacking the muscles, causing them to be weak and suddenly, you, seemed to fail me. You, that had been so strong. Running the KCFO Fun Run (5k) without training ... suddenly could not lift a brush to brush my hair. You could not focus on a page of the written word because the images were doubled. Your eyelids would not stay open, no matter how hard you tried. Chewing food was a full body experience for you. The elbow resting on the knee, the chin cupped into the hand, and then the jaw manipulated not by the muscles in the face, but by the motion of the foot to the arm to the hand .. like a water wheel ..hoping to get enough force to get an egg chewed enough to swallow.
Yet, you managed to get me through long enough to find a diagnosis, a treatment. When I didn't know what to do, you survived.
You have suffered through the pain of lupus, and attacks of the immune system on itself. You have had the joints deteriorate, change positions and arthritis deteriorate the knees that once jammed triumphantly onto that volleyball court. You have withstood 15 surgeries, and treatments of plasmaphereisis, IVIG for years. You have endured blood clots and infections ranging from pneumonia to sinus requiring surgery. You have survived.
You have endured countless blood tests, needle IV insertions and an IV port that was accessed monthly for six years. You have had the insult of an EMG no less than six times. You have had to have IV contrast for body scans and MRI's and CT scans and each time the needle poked through the skin that was meant to keep foreign objects out, you felt the insult of the instrument trying to help you.
You, have endured.
But, what is most insulting to you, is what I, have done to you myself. For whatever reason ... genetics, environment, response to experiences past ... decided that I did not like you and was determined to change the essence of what you were. I would not feed you when you needed to be fed. I would over work you when you needed to rest and I would drive you into conditions no body should have to experience.
More times than I can count, I refused to put precious calories into your mouth, for your system to process so that *I* could survive. The end result, was for me to drive you into a myasthenic crisis. Not enough potassium, and other such electrolytes caused your immune system to attack you and you responded as best you could, but, even healthy bodies don't respond well to that.
So the doctors gave prednisone, which is, in and of itself an assault to you. 100 mgs ... for 9 months. By the time it had wreaked it's ravages, the weight I'd taken off so violently, had been just as violently placed back on. I determined to take them right back off and did so. Denying you, of what you needed most, tender, loving, care and nutrition.
The end result, was another stay in the hospital, only 15 days this time. Respiratory support, and plasmaphersis had to pull you out. And again, 80 mg of prednisone ... till you could support yourself from the ravages of what I had done to you.
So here I stand, and the realization that I came very close to putting you at the hospital steps once again. Your muscles not working right and difficult to focus as images that should be clear, double. Pain increasing, and chostochondritis just won't go away as you try your hardest to deal with what you need to deal with, while I stubbornly refuse to give you the simple nutrition you need to get through a day.
Sixty milligrams of the dreaded prednisone is the result. As I pray this is enough to get you through ...and up and working again it strikes me why you've failed me again. It is, because I failed you. I have to feed you ... and while working on the things inside my soul that have me clinging to my stubborn insistence at doing the things that cause me to want you to disappear, the prednisone will help to control the immune system, to allow you to heal from the violence I've inflicted on you in the last few months.
I recognise, that while prednisone is the cure, it is a wicked cure and you will not like it's process. It's a bitter pill to swallow and it is not your fault. For that, I am deeply sorry.
I see that ...and now ... I am going to do something I've never done before. Ever. I'm going to contract with you. I'm going to promise to:
let you rest when you need to rest
exercise when you need to exercise
put food into your mouth, and let you chew it, swallow it, digest it and absorb it and HAVE it ... daily, regularly ...and forever.
I'm going to take the medications for the pain you endure as I've been asked to.
I'm going to start to take care of you
You took care of me when I could not.
You gave me so much ... I've taken so much.
I contract with you ... to make you, my body, one with my soul and my spirit. To stop trying to make you a non entity that does not matter.
I contract with you to become me.