Love can lift you up and carry you through the clouds
The particles of water come in and fill your soul
You plan for forever when you pledge your vows
But not much is left to your control
They start climbing down the stairs
They climb back down to earth
Everything changes despite your tears and prayers
And you ask where is the love, where is the mirth
Fight or flight, your heart's eyes dart around
You want to be with them, but you won't be pulled down
Chasing after them at first, down each stair
But yellow fog creeps in and reveals a beware
Walk away or stay, your heart can't bear that pain again
Why does leaving always feel like a sin
Friday, February 22, 2008
In Tune
My uncle came over tonight and immediately found my guitar standing alone and underplayed like a lost scratched cd. I don't quite take care of it or appreciate it as much as it deserves and I often forget about it. I often don't play it.
It should be my baby; it should be my friend. "It is my therapist," my uncle told me, staring me seriously in the eyes, looking into me to make sure I truly understood what he had just shared with me.
And he started treating it, doctoring it, tenderly showing it some love. And the guitar began to respond he informed me. He could feel it. In the strings, in the wood, in the sound, in the harmony he could feel it. It's energy began to change.
He began to be a kind teacher, one of the young ones you get in school, where they are more your friend, your soul's friend, talking to you and not at you. He taught me about the tune of the guitar.
I terribly simply thought the guitar is either in tune or it isn't. My uncle taught me it is a much deeper experience than that. Grand Canyon deep. Center of the earth, where the axis is, keeping everything moving, spinning, and balanced deep. He taught me that the tune of your guitar carries an energy with it, and that energy can affect you, your room, the whole aesthetic countenance of the room. Like there is an infinite harmony being released from the guitar all the time, and whether or not the guitar is in tune can change how you feel. Like you are either in tune or not. Considering the affects of sound on water, and our bodies are made up of over fifty percent water, the energy thing makes complete sense to me.
My guitar has an energy. The wood, the body of the guitar holds that energy in from the tune of the strings, and emits it into the room and into me. And my energy can be absorbed by others. We are all connected, and I am connected to my guitar. I need to take care of my guitar so that I am really taking care of me, and all those I come into contact with. My guitar is my friend. And our harmonies need to be in tune.
It should be my baby; it should be my friend. "It is my therapist," my uncle told me, staring me seriously in the eyes, looking into me to make sure I truly understood what he had just shared with me.
And he started treating it, doctoring it, tenderly showing it some love. And the guitar began to respond he informed me. He could feel it. In the strings, in the wood, in the sound, in the harmony he could feel it. It's energy began to change.
He began to be a kind teacher, one of the young ones you get in school, where they are more your friend, your soul's friend, talking to you and not at you. He taught me about the tune of the guitar.
I terribly simply thought the guitar is either in tune or it isn't. My uncle taught me it is a much deeper experience than that. Grand Canyon deep. Center of the earth, where the axis is, keeping everything moving, spinning, and balanced deep. He taught me that the tune of your guitar carries an energy with it, and that energy can affect you, your room, the whole aesthetic countenance of the room. Like there is an infinite harmony being released from the guitar all the time, and whether or not the guitar is in tune can change how you feel. Like you are either in tune or not. Considering the affects of sound on water, and our bodies are made up of over fifty percent water, the energy thing makes complete sense to me.
My guitar has an energy. The wood, the body of the guitar holds that energy in from the tune of the strings, and emits it into the room and into me. And my energy can be absorbed by others. We are all connected, and I am connected to my guitar. I need to take care of my guitar so that I am really taking care of me, and all those I come into contact with. My guitar is my friend. And our harmonies need to be in tune.
Thursday, February 21, 2008
Hunting Response
Donald Miller says that God in fact never closes His eyes, and I suppose in most contexts that is completely comfortingly true. The other night however I imagined God in the room with my mom and me, and I imagined Him flinching at my whole experience because He was feeling my pain, dread, fear, and anxiety.
I started Kineret in November 2004. It is a live protein that needs refrigerated and injected into subcutaneous tissue every single emotional day. The area, either ones buttocks, back of arms, thighs, or stomach (but we don’t do my thighs because I have too many nerve endings, that perceive pain, from all the muscle I kind of still have there from catching for four years), needs iced beforehand, or beforeneedle or beforemedicine I should say because the medicine burns and aches and shoots pain when entering the tissue. Ice numbs the area and makes the shots barely tolerable, but that is from not tolerable at all, so I guess it helps.
But I am lying face down, butt up, with an ice pack on my bottom, eyes closed, waiting to go through Hunting Response—which I learned in Intro to Athletic Training in the section on modalities, is “the cyclic period of vasoconstriction/vasodialation which causes a slight increase in temperature after 15 minutes of cooling.” I looked it up to be honest. But the part I do remember from actual word for word memory are the four stages of Hunting Response: cold, burning, aching, numb—anyway, I am literally lying there counting out each stage as they happen because I need to keep my mind on anything other than the fact that I hate getting these shots, all the while praying to God, and imagining Him squinting at the whole situation. And when my mom finally sticks me, FLINCH! God flinches because He knows I don’t like getting these shots.
Cold:
When I started Kineret I was in the hospital and used to being poked and prodded like a pin cushion, so it was just another medicine to me, and one that they believed would really stop the flare, so I was almost excited about it because I was so excited at the possibility of feeling better than death. It was just a different temperature to an already different life.
Burning/Aching:
Then I was sent home, which was a hotel because we were a thousand miles away from home and there was no way I had energy to fly yet. I couldn't’t even sit at the dinner table to eat; they propped me up in bed. And we are in an unfamiliar place, I just basically almost died, I am physically exhausted and emotionally exhausted, and I hate needles, and the thought finally sank in that I was going to be stuck with one every single day and injected with burning, aching medicine on top of everything else.
Numb:
Well, I don’t think I will every reach numb when emotionally or physically thinking about or experiencing this medicine, but one can hope. One can hope if I wait long enough, whatever the equivalent of 15 minutes is to life…fifteen years maybe? (I hope not, but probably) that the whole thing will get easier. I guess if I am going to be completely honest, I didn’t cry as much about it this time, but it is still early. Usually the tears build up over time until I fall into fetal position and beg God to help me.
I abruptly stopped the shots January 2006, and I didn't tell a soul that I had. I am not even sure that I admitted to myself yet what I had done. I had begun to risk a flare by stopping Kineret. I stopped however because I was just sick of it. I was angry at that part of my routine. Every day, every single day, never a day off, I had to ice, inject, ice, be sore. And it suddenly wasn't worth it anymore. The burning and aching feelings inside became too much. I couldn't wait any longer for the numb stage to suddenly arrive. And a part of me knew that it probably wasn't coming so I quit. Maybe a month later I finally told someone, or they found me out, or something. Everyone pretty much was so stunned at what I had done, and realized the emotional and psychological wear the shot experience had obviously had be doing to me that they just kinda looked at me with shocked and concerned eyes and said something along the lines of, "Okay." And that was that. I figured I could do anything and everything else, other meds, and not really have to go back on shots till it was absolutely necessary.
Guess what, it is necessary. Life got more challenging than usually. I am flaring, and if I want to feel better I had to start this up again. So February 2008, two year later, I am back in emotional warfare or hell, or a roller coaster or skydiving, or something of the kind.
I am wondering something though. Usually when writing an essay of some sort there is some conclusion one is supposed to get to. And I think I have one. I think Hunting Response is often what we experience in life. Maybe with the death of a loved one, or an ended relationship, a friendship maybe. We usually experience it with loss. I know I have in my life living with this disease.
There is that cold, empty feeling at first, and then it burns your soul, a sudden change in life’s temperature, and then the heart aches, and over time the pain begins to ease. I don’t know. Maybe I am stretching. Maybe you can come up with something on your own. When do you need to count out Hunting Response just to get through the moment, to keep your mind on anything else but the pain and the image of God flinching at your suffering?
I started Kineret in November 2004. It is a live protein that needs refrigerated and injected into subcutaneous tissue every single emotional day. The area, either ones buttocks, back of arms, thighs, or stomach (but we don’t do my thighs because I have too many nerve endings, that perceive pain, from all the muscle I kind of still have there from catching for four years), needs iced beforehand, or beforeneedle or beforemedicine I should say because the medicine burns and aches and shoots pain when entering the tissue. Ice numbs the area and makes the shots barely tolerable, but that is from not tolerable at all, so I guess it helps.
But I am lying face down, butt up, with an ice pack on my bottom, eyes closed, waiting to go through Hunting Response—which I learned in Intro to Athletic Training in the section on modalities, is “the cyclic period of vasoconstriction/vasodialation which causes a slight increase in temperature after 15 minutes of cooling.” I looked it up to be honest. But the part I do remember from actual word for word memory are the four stages of Hunting Response: cold, burning, aching, numb—anyway, I am literally lying there counting out each stage as they happen because I need to keep my mind on anything other than the fact that I hate getting these shots, all the while praying to God, and imagining Him squinting at the whole situation. And when my mom finally sticks me, FLINCH! God flinches because He knows I don’t like getting these shots.
Cold:
When I started Kineret I was in the hospital and used to being poked and prodded like a pin cushion, so it was just another medicine to me, and one that they believed would really stop the flare, so I was almost excited about it because I was so excited at the possibility of feeling better than death. It was just a different temperature to an already different life.
Burning/Aching:
Then I was sent home, which was a hotel because we were a thousand miles away from home and there was no way I had energy to fly yet. I couldn't’t even sit at the dinner table to eat; they propped me up in bed. And we are in an unfamiliar place, I just basically almost died, I am physically exhausted and emotionally exhausted, and I hate needles, and the thought finally sank in that I was going to be stuck with one every single day and injected with burning, aching medicine on top of everything else.
Numb:
Well, I don’t think I will every reach numb when emotionally or physically thinking about or experiencing this medicine, but one can hope. One can hope if I wait long enough, whatever the equivalent of 15 minutes is to life…fifteen years maybe? (I hope not, but probably) that the whole thing will get easier. I guess if I am going to be completely honest, I didn’t cry as much about it this time, but it is still early. Usually the tears build up over time until I fall into fetal position and beg God to help me.
I abruptly stopped the shots January 2006, and I didn't tell a soul that I had. I am not even sure that I admitted to myself yet what I had done. I had begun to risk a flare by stopping Kineret. I stopped however because I was just sick of it. I was angry at that part of my routine. Every day, every single day, never a day off, I had to ice, inject, ice, be sore. And it suddenly wasn't worth it anymore. The burning and aching feelings inside became too much. I couldn't wait any longer for the numb stage to suddenly arrive. And a part of me knew that it probably wasn't coming so I quit. Maybe a month later I finally told someone, or they found me out, or something. Everyone pretty much was so stunned at what I had done, and realized the emotional and psychological wear the shot experience had obviously had be doing to me that they just kinda looked at me with shocked and concerned eyes and said something along the lines of, "Okay." And that was that. I figured I could do anything and everything else, other meds, and not really have to go back on shots till it was absolutely necessary.
Guess what, it is necessary. Life got more challenging than usually. I am flaring, and if I want to feel better I had to start this up again. So February 2008, two year later, I am back in emotional warfare or hell, or a roller coaster or skydiving, or something of the kind.
I am wondering something though. Usually when writing an essay of some sort there is some conclusion one is supposed to get to. And I think I have one. I think Hunting Response is often what we experience in life. Maybe with the death of a loved one, or an ended relationship, a friendship maybe. We usually experience it with loss. I know I have in my life living with this disease.
There is that cold, empty feeling at first, and then it burns your soul, a sudden change in life’s temperature, and then the heart aches, and over time the pain begins to ease. I don’t know. Maybe I am stretching. Maybe you can come up with something on your own. When do you need to count out Hunting Response just to get through the moment, to keep your mind on anything else but the pain and the image of God flinching at your suffering?
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