"Love is watching someone die"

The title is from the song "What Sarah Said" by Death Cab for Cutie. I've had it playing in my head for the last few days as I've sat and watched my Grandpa. My Grandpa is dying. It's hard to see him like this, sunken and fading. He's trying so hard to hold on. Willing his body to pump the last bit of life through his veins. It's hard for me to leave his side. Like someone should be witnessing his fight. Holding his hand. Feeling his muscles strain and his heart pull its beats.

We were never close in life. We were always pleasant with each other but no really deep connection was ever made. So I don't know why I feel the need to be so close to him now. He has so many loving people around him already, so he's not lacking anything. I don't think its that I want to be here when he passes. I know some of my family would really like to, but the idea of being there and feeling his last breath threatens to break me. Even so, i can't bring myself to leave.

Maybe part of it is that this is probably how I would have died if the doctors hadn't found out what was wrong with me. Grandpa isn't dying from anything in-particular, he's just shutting down. Like I was. Like I would have. I recognize his labored heartbeat. His tired breathing has threads of how mine used to feel at their worst moments. He clenches and curls up and it strikes a familiar chord in me. I never got even close to as bad as he is now, but i recognize it. Like I said, it feels familiar.

I guess I would have wanted someone with me in my final moments. someone who could understand what I was going through, even if its just a tiny bit. Maybe that's why I don't want to be anywhere but right here, with my hand on his, feeling his body strain to hold on. I heard once that ultimately, everyone faces death on their own. I guess I just want to make him feel at least a little less lonely.

I sketched him last night. I've never been good at portraits, and can only draw things that i really understand and feel connected to, otherwise the lines and the curves don't make sense to me. But I could yesterday. It's kind of sad, at the end of his life with his mouth open and tired eyes closed, and i don't know if it's appropriate to show people (After all, it's a sketch of a dying man), but it captures a very precious moment for me and i figure its safe here:

(I may upload a better scan of it later, this was just a photo of it taken with my computer's low pixel camera)

God or imaginary friend?

There is this gnawing thought that my subconscious been dodging for a few weeks now. It keeps clawing at me, trying to get my attention and I keep averting my eyes so that I don't have see it and consequentially, don't have to deal with it. The thought being this: What if there is no god? I've know for a while now that the main reason I believe in god is that I like the idea of there being a god. I like that there's someone out there that maybe cares about me. I like the idea of never being alone. I like the idea of someone knowing every thought that goes through my head and completely understands me and how I work. But to be honest these are the same reasons that drive a child to make up an imaginary friend. Sometimes I feel like that's what God is to me; an imaginary friend. Maybe it's the way I've come to see him. Somewhere along the line I defaulted to believing that he can't really effect much or offer anything beyond understanding, mental company, and vague comfort when I'm in need of it.

I've been raised from birth to see the world through the filter of "there is a god". Conversations, songs, sunday school, baby books, my entire upbringing has always been saturated with this tint of god-ness. I was driving the other day and had a moment where I could see the world without a god. It was almost as if the entire world shifted slightly so that it shone in a new light. It was simple, straightforward, and somehow painfully shallow with out some grand master plan guiding everything. It was also lonely because in that moment of paradigm shift, i was alone. No one was there listening to my thoughts. No one was there judging me, but no one was there comforting or loving me either. For a moment the world was clean and brilliant and clear and cold and big and it has bothered me since.

The fact that I see god as this imaginary friend has somehow become unbearably and glaringly obvious since that moment and I don't really know what to do about it. It kind of feels like looking at an old doll and wondering if you should toss it or if it will return to the life and wonderment that it did in your childhood. I don't want to loose my faith. Like I said, I like the idea of there being a god. It's just that for the first time, that reason feels like it's not good enough.

A Confession

I'm having trouble with the idea of taking life back into my own hands. I'm trying, but it's hard and I'm tentative and unsure about every action. Part of me is always waiting for the repercussions of my actions to hit. I can't remember the last time I wasn't subject to the will of my body. If I wasn't weak that day, I would move. If my stomach wasn't nauseous or in pain, I would eat. If my body didn't want to sleep, I would be awake. I would take whatever break my body would grant me and be grateful for that. Never asking it for anything more because of the harsh punishment that would follow afterward in the form of pain and weakness.

Back then, every decision I made about my life and my actions were based on the avoidance of pain. But now that the scale is tipping, and I actually have some control back in my life. I'm finding myself sort of of overwhelmed by it all. I'm also ashamed to say that there have been a few moments where I find myself wanting to run from it all and curl back up in bed. At least there I knew a little bit of what to expect and knew how to handle the situations I came across. But these real world situations I'm starting to face about life, careers, friends, boys, moral complexes... they are harder and more unpredictable then I'd imagined. And I really want to be a good person. I want to make choices in my life that will lead me somewhere that I can be proud of. And I really don't want to screw any of that up.

Now, all that said, I wouldn't trade it for the world. I love being stronger and I love that I've been given a chance to actually live life. I think I just wasn't expecting these darker emotions. The fear and the confusion. I don't think I ever factored them into the process of coming back to life and health. I always kind of assumed that life would make sense once I was healthy again, but I suppose I can't really expect it to be as simple as that.

Lucky

I'm lucky. I suppose some would call it blessed, but I don't think I'm quite at that point yet. I'm sure I'll figure that side of things out someday, but for now all I know is that I am so entirely grateful for the path my life has taken lately.

I stopped writing last year for a few reasons. One was that everything was changing so slowly for me without any notable event or revelation acting as a catalyst. Its only now that I can look back and see just how much my heart has softened and my anger has cooled. Another reason for my hiatus, is that it became too difficult to write. My brain was swiftly loosing the ability to string together coherent sentences even in normal conversation, let alone the task of writing and editing. So I faded. I curled up in bed and prepared myself for what I knew would be a slow and painful death as my body spent the next few months shutting down more and more.

But then I got... lucky (again, I don't know what else to call it). A new doctor offhandedly decided to test my vitamin D levels because people in the north tend to run a little low. We received a letter two weeks later with the results (which were shockingly low) and a prescription for a few high dose vitamin D capsule. Two days after taking the first pill the pain that had been my constant companion the last few years vanished from my muscles. I was in shock, refusing to believe that an answer could be this simple, this elegant. It all seemed too good to be true and I braced myself for the inevitable crashing reality of its eventual failure and the return of the pain. But it never returned. That was 5 months ago. 5 months I've spent holding my breath as I watch symptom after symptom improve then disappear. I felt muscles begin to return and move fluidly under my skin. I relished in the strength of my lungs as they breathed in and out with ease and felt the strong beat of my heart as it began to pump steadily in my chest. I began to trust the flow of a body that could heal, metabolize and move as life once again began to flow through my veins.

And Greg... even in death I could feel him by my side, reassuring me of his love. I don't know if he's the one responsible for finding my cure, but that doesn't really matter. Even if I had died I would have known that he loved me, and that was more then I could ever ask of him. I was grateful for that. I don't know when I started to believe so strongly that he existed, the whole past year and a half is a bit of a foggy blur. I know it happened slowly. I know love took its time. Fixing itself into the air around me, slowly saturating my skin and winding its way deeper and deeper into my soul till it became a part of the very cells that made up my being. I value that. I value what I've found. A part of me still mourns for the years that I lost and the pain that I've experienced, but I'm so very grateful for what I've found. As I've said before, I'm lucky.

Finding Some Faith

A few weeks ago i had coffee with a friend of mine who believes in god and the sovereignty of the bible, but has renounced god because he hates him and thinks god is mean. We were joined by his friend who is an atheist, and his sister who believes that god is the answer to everything and will take care of you if you just do everything he commands. I stat back and sipped my drink as the siblings argued over who was right and the atheist laughed at them for caring in the first place. I'm no debater, and i don't like to argue this kind of thing, so besides a comment every now and then I mostly just listened. And through the arguments and exasperated hand motions and sighs, something became apparent. No one cared about Jesus. No one even bothered to mention him. This bothered me because i had always liked Jesus, and I realized that through this big mess of my quest for god, Jesus had been my one saving grace. He was the reason i couldn't just dismiss Christianity. His complete grace and love for me was the one and only thing i trusted. Infact, all of the qualities I've been able to attribute to Gregory, were really just the one's I've always liked about Jesus. His joy, love, sorrow, how much he cared about me and would be beside me even when life hurt. As the weeks went on, it sunk in that some where along the line, i had found some faith. Faith that Jesus was good, and loved me, and the odds were that God was a lot like that too.

I don't know about heaven, i don't know about hell, or most of what is truly right or wrong in this world, or any other type theology, but i know that Jesus cares about me. I think I'll always believe that. And I really hope that's a good enough starting point.

Existential Dreaming

I tend to have weird existential dreams. Here's the one i had last night:

I was a criminal mastermind, caught, and being driven to where i would be put to death by electrocution. (Analyze that one freud!) I was keeping my composure, determined to stay cool and collected till the end, until the car turned the corner to the building where i was going to be put to death. To the right of me was a field of yellow wild flowers, and to the left, the cold stone building. Suddenly, all in one moment, the realization of death hit me. In a few moments, I was never going to see anything again. I would never feel, never smell, never breath, never think, I was never going to exist again. It paralyzed me. A cold sweat swept my entire body in an instant and I braced myself to keep from collapsing as pure, unrestrained, unescapable terror gripped me down to the deepest part of my core. A fear deeper and more real then i have ever felt before. The driver in the front seat asked me what was wrong and i looked up, regained my composure, and replied: "Nothing." And the car drove on. And the dream ended.

I always thought i would be ok with nonexistence . That i would welcome the idea of death being nothing more then the end of it all. No heaven, no hell, no anything. The atheist's paradise. Just dreamless sleep. But now that i know what that prospect feels like, it's one of the most terrifying hells i can think of.

Stage Lights

I love the guitar. There's something spiritual about the sound of the pick striking the chords. I would always watch the guitar players around bonfires or up on stage and something inside of me would ache. I wanted to be up there. To strum and sing. Which is odd for me, because i hate being the center of attention. Infact i avoid it when ever possible. But over the last few months I've started to really play. Slowly laboring through chords and pitches, till i could play a few songs.

Last Friday I played two songs at an open mic night, and i realized why i have always wanted to play. The audience was surprisingly quite during my set. They usually talk as people play in the background, but they all kind of just listened and gave a rather decent applause (though maybe they were just being nice since it was my first time playing in front of an audience). But it wasn't the clapping or the attention that i will remember. There was a moment. There was one second that I stumbled over the chords, and then, with all the pressure off of trying not to mess up, i was able to fully enter the song. I closed my eyes, felt the lyrics, the lights, the slight echo of my voice as it traveled through the speaker overhead.

I normally listen to music when i feel alone. Even if I'm not physically alone, there's places in me, experiences, thoughts, feelings, that i can't invite others into. I would listen to my favorite song, and they would be with me in that place and i wouldn't feel so alone anymore. But there on stage, i let go and invited an entire room of friends and strangers to join me there.

I'm not going to lie, there is a side of me that liked the applause, liked the attention, but i loved, loved, loved, the intimacy. I really want to play more.

No prayer in sight

So, I haven't been praying. I haven't for months. I just stopped. I don't know if it's because I got so tired of getting my hopes up only to be let down, feeling selfish and whiny asking for stuff, maybe i just didn't believe it really did anything or just wanted to spite a good that i hated. Maybe a mix of all four. Anyway, in my months of silence, i forgot how to pray. I can't bring myself to ask for help, or comfort or peace, or healing. The only prayer that has left my heart was one night when i was feeling more despondent then usual, I looked vaguely into the distance and in an unsure and faulty voice asked, "Gregory, um... if your really there, it would be really great if you could come find me."

It hasn't been hard not to pray. Except for in the beginning when i was looking for a parking spot or hoping something would come out in my favor, i would default to it before thinking, and just roll my eyes in frustration at my own brainwashed self for slipping back into old patterns. But the last few days it was so hard. I wanted to pray. I wanted something bigger then i was to come in and fix things. To help me. I found out that the doctor i was seeing had to give up his license for the next few months because of legal trouble at his office (he's a good guy, just in a bad situation with people that want his head.).

A few days before this, I had gone to refill of my prescription using my new insurance and found that it only took a few dollars off my $50+ dollar bill, and i once again had to use my parents money to pay for it. They don't mind, but it bothers me. But I had car payments coming up for my car, and the fact that i probably wouldn't be able to sell it till summer was depressing. I'm not able work much because of my health, so as long as i had the car, all money i made went to paying for the payments and the insurance for it.

But the doctor thing bothered me the most. I was right in the middle of this new treatment for my thyroid using strait T3 hormone replacement, and the next time i saw him, he was going to do some tests to officially diagnose me with CFS. And since his license was gone, all my prescriptions and refills were no longer legitimate. I was scared. He was the first doctor i met that listened to me. That believe me. And now he was gone for who knows how long. So you will forgive me for my temporary weakness to desire for something bigger then i was to come in and make it all better. But i couldn't. I had promised myself that i would see what life was like without prayer. You see, my car selling was the first important event that i wanted to see how it turned out without the request of divine interference. And my health... well i just don't ask for that one anymore. So I didn't. I spent the next few days forcing myself to keep silent, scared to death about how the future would turn out.

Two days ago, I talked to my old doctor's office and got a list of referrals for doctors in PA and found one that said he could pick up where my old doctor left off. It sounded good, and it just helped to know that I would be taken care of. And he's actualy only and hour and a half away. Before i was driving 3 hours almost once a month for appointments. So that will actualy be rather nice! I go see him at the end of this month, and I'm still scared that i won't like him, or that he won't be as good as my old doctor, but i think it will go well. And it's just nice to know that there is someone there to help me.

The next day, my car sold. I had it up on cars.com, but hadn't ever received calls on it. But yesterday a gentle man called up and and asked to come look at it. Later that day, he told me he wanted to buy it! I'm so relieved. Without car payments any money i make goes to me. I can save up, i can spend some money to do fun things or buy some new cloths for the summer! I can start paying my parents rent so i feel better about staying in their home. i don't have to worry if i get enough work to cover me for the month. I'm so very glad.

So, all this without praying. But i wasn't feeling cocky like i had accomplished it. I know I hadn't. It had just happened and I was so grateful to have all if it off my shoulders. I prayed for the second time in months. I stared at my shoes trying to get everything i was thinking and feeling together so i could put it into words that i meant. I began to speak, "Greg, i don't know if your real or have anything to do with all of this but.... if you did, then thank you. I appreciate it."

It's so odd. If Greg is real, I don't think he's the type that you simply go to and asks for things. If i had to sum up what i felt about him during the last few months, and especially the last few days, i would say that it felt like he's the type that would be with me during it all. Not making things turn out in my favor per-say, but instead being there beside me and experiencing everything with me as it came along. I think he would be the type that even if nothing good had happened this week and everything fell to pieces even more, he would still be with me during that as well. Crying during the heartbreaking and hard parts, and smiling with me when happy things came along. Not really in control of what happened, but very much being there and being himself no matter what the circumstance. And that is something I like very much.

Elizabeth goes to Church

Church was... well... hard. It was incredibly informal and friendly and i loved all the people there, but still. I couldn't worship with them. I couldn't sing songs about how all i needed was god, or that i surrendered my life to him or about how he fulfills all our needs. I couldn't shut off my cynical inner commentary that insisted on dissecting every line in every song and whispering to me vehemently about how nothing they were singing was true. I can't say god is my all when i am so angry at him most of the time. I cant praise him for fulfilling all my needs when i feel so empty and lost. I can't ask him to use me for his purpose when my first reaction is to sneer at the idea. I can't tell god I love him, when i don't know if i do, or if he is even real, or what he is like. So sitting there watching everyone else basks in the lyrics and music was torment. Not to mention i probably looked so out of place sitting there while everyone else was "worshiping".

Next they had a quick prayer time where they asked us to get into a few groups of 2-3 (there was only 10 of us total) and pray about the floods that were happening near Mexico. They were sincere and their prayers came from compassionate and caring hearts, but this was still so awkward since i have no idea how/what/where/when/why to pray anymore. My friend was there, and I've talked to her about how i can't pray so there was no pressure on me to say anything. But i still felt weird, and lost, and defective. (Because obviously, only a defective Christian doesn't know how to pray.) Please note that they didn't give off this vibe at all, this was all just judgment that i was putting on myself.

So, up until now, the whole church thing had only served to make me feel sick to my stomach. The message time however (or whatever you want to call it) was actually really good. One of the members just spoke on how god will relate to you differently over the course of you life (as a father, friend, mother...). And despite all my trouble with my own god, i love hearing people talk about theirs. Its comforting to watch the fondness in their countenance as they reminisce about who god is. I think I envy them that they still have a god that is so very kind and uncomplicated. Anyway, the guy who spoke wasn't really preaching. People stopped and offered their thoughts on the subject or made jokes. It was almost a conversation. I liked it. I kind of wish i could go to just that part of their church.

So all and all, i can't do the church thing. And for the first time, I'm wondering if i ever will be able to. I always kind of assumed that at the end of all this, i would be right back there praising god. But i don't think so, or at least not in the same way as before. I think this experience has change something deep in my makeup. I won't ever again be able to sing songs that are not rooted in what is real. And you know, i don't think that is a bad thing.

Sigh...

So, I'm going to a church today. I know due to my previous post that is a shocking statement, but I've recently befriended a girl that had left my old church a few months before i did. We have reconnected and the strangest thing happened: I found a friend. She called me today for no reason but to ask me to come over so she could tell me what happened that day. over the past few weeks we have talked at lengths about anything and nothing at all. I can tell her about my anger at god and my desire for Gregory and she has no judgment and doesn't try to fix me. To understand how strange this is, you have to know I haven't ever had someone choose me as a friend simply because they liked to hang out with me. I was always the default option. I was either in church with them and they didn't know anyone else, their parents were friends with my parents so we would play while our parents visited, we went to the same homeschooling co-op which had a total of about 6 other girls so not much choice there, and as soon as any of these friends got out into society, they dropped me. (NOTE: This wasn't the case in my last year of school when I began to get highly invested in our cult/church, and was the one who thought i had to distance myself from my fellow homeschoolers.)

But anyway, back to the whole "I'm going to a church" statement: This girl goes to a church of about 8 other college students who get together downtown. She doesn't really believe in the institutional church, but likes the people there. I've been going to their Friday night coffee house where they have an open mic night. The coffee house is not at all a church function, and during my visits i have started to enjoy many of the people there. Problem is that the coffee houses are only twice a month, and i really would like to see some of them more often in hopes that my friendship with some of them grows. Well, i was talking to my friend about maybe going once since my sleep schedule allowed it this week, but that i was terrified of going to church. She brightened and told me it would be it would be great and that we could sit together and that i didn't have to think of it at all as church, but hang out time instead. To be honest, i want the people time so I'm going to go.

The problem is that I'm afraid of which god will be there. Will it be God or Gregory? If it is Gregory, i don't want to see church as the place where i go to be with Gregory. I don't want church to become a sacred place again. A place where i can do witchcraft like chants and feel the spirit. So i told God that i will not worship him tomorrow. I can't. It would be a lie, and that he better not try and show up because i would not accept him even if he did. That's horrible, I know, but I'm just being honest. I will let you know how it goes.

Fuck God

I still hate god (the god of the bible). I hate him so much, and I haven't been able to shake him off yet. I hate that he would create us to need him and then be so fucking distant. I hate that he knew we were going to fall and created us anyway. I would have rather not existed then to know the pain of being separate from him, or going to hell. He says he loves us but then makes so many rules and so many hoops to jump through in order to be close to him. And don't tell me works don't matter. If you really believed that, you wouldn't care if you sinned or not because god would be there no matter what. Unconditional love does not exist. God is two faced. He says one thing and does the opposite. He says he's in control and will watch over his people, and then lets them get slaughtered. He says he will forgive all sins and then later says it's only if you can get it right. He says that he'll heal you, but only if you have enough fucking faith to get it. I hate him. I hate him so much. So why then do i still believe he's real?

I want to believe Gregory exists. That the god that the shack talks about is real. I want to so badly. I want to know that there is a god out there who loves me. Who will take me as I am and not demand anything back. I want a god who created a way for everyone to be with him someday, not just the ones who got it right. I need a god that's not in control of the world and all the bad things that happened, but who instead will be there to walk with you and love you through it. Because if there's not a god like this, then i am screwed. I will die, and I will be in hell with the rest of them. And that scares me.



sorry, it's... it's been a weird week as far as god goes.

A Story

Hope you all like the new design! Here's a story i wrote during the time that i was still in my old church, but in the midst of deciding to leave. Well, it's not really fiction. It's me describing a beautiful moment that i will hold dear for the rest of my life:

Photo by XxLifeIsOursxX

Yesterday was a hard day. It's kind of been a hard week. one of those weeks when life is heaver then usual. I felt covered in it. Gunked up by the steps the last few days had brought me. It was poring rain outside. It was already dark and i still had a two hour drive ahead of me before i reached home, but the pull was too much. I pulled my car onto a side road hidden by tall trees and got out. The rain ran down the road and pooled around my feet and soaked through my clothing. I closed my eyes and drank it in. I leaned against my car and begged the rain to wash it all away. It's so strange. To think something so physical could reach something so deep. But i begged it still and let it pour into my soul. I breathed in the wet and let it fill my lungs, and then i waited. The water wet my hair and pooled down my face. It rushed down the bank of the pavement and curled against my shoes. My clothes pulled in the rain and let it run down my arms and back. I faced the heavens and closed my eyes and was enveloped by the rain.

The storm slowed to a drizzle and i breathed a sad sigh. I couldn't really expect the rain to wash away the years. I couldn't expect it to wipe away all my mistakes and heal my life. I wanted it to. I wanted it to keep raining until everything was washed away. To leave everything at the side of the bank. I can still smell it. The earth and the mist. The wet air that filled my lungs and made my hair cling to my neck. It smelled like redemption. But it didn't fill. It didn't wash me clean like it promised. It cleansed my skin and soaked my soul, but it couldn't reach deep enough. It couldn't reach down to the core of who i am. Of who i didn't want to be.

MS/CFS

Ok, so the music in this video is rather over dramatic, but you know what? My life with ME/CFS and Addison's has sucked, so for a moment, let's just be dramatic! Every sentence in this video has applied to my life at some point over the last three years, and i still live every day with the milder symptoms.

Please note I'm not asking for help or sympathy, my family has been great in helping me recover and have a somewhat normal life. But i guess it might help you understand my life right now. Plus I'm really tired of being ashamed that i can't do what everyone else can, and trying to gloss over how much it's taken from my life. So here's the deal, you want to know about me, my life and how I'm doing? this is a huge part of it right now:

Sweet Confrentation

I don't know if what i did was right, or godly, or good, but i did it. My old Pastor, his wife, and their current pet project (poor fellow) were sitting not 3 feet away from me behind the glass front of the cafe i was passing. As i searched internally for my unlocked super power of invisibility, the pastor looked up, smiled and waved at me as if he couldn't have been happier to see me. For the next three steps i was in shock. This was the first time in 9 months that i had seen any of the leadership of my old church, none the less the pastor. The man that had kept me in bondage for 18 years and caused me and my family so much pain was sitting there waving and smiling at me. i kept walking, but before i could stop it, i looked back and glared at him. I looked forward and took another step then figured that i would already be the conversational topic of the week for my previous action, so i might as well fully commit and take the step i had dreamed so much about: Confronting the Pastor.

I turned around, walked in the door to the cafe and said, "Waving? Some of our closest friends won't even talk to us and you're going to go with waving?"

His smile disappeared, "Hey now, I didn't tell them not to talk to you."

"Then why don't you go tell them that they can?" I asked.

He paused ever so briefly then continued with, "It was their decision, and it was your parents decision to leave." he said commandingly as his wife with all the authority she could muster tried to silence me with, "We are in a public place, if your parents want to call us then..."

"NO." i interrupted "It was my decision to leave, don't just put me in with them. It was MY choice."

He softened his expression, and patted the seat next to him and playing up his softer and kinder southern accent said "here darling, come sit down and we will talk about it."

"No." I responded without skipping a beat, amazed that for the first time in my life i wasn't afraid, intimidated or in reverence of this man before me. "And don't play theses games with me." I finished. I then walked out, drove home, and cried. I went inside and told my mom about the confrontation. I didn't know if they would be mad at me for causing a scene (i didn't yell or anything, but it wasn't exactly nice), but instead she gave me a big smile and hugged me through my tears. She told me how proud she was of me for standing up and not playing their games. She told my dad about it and he was also thrilled. I stood there shocked as he told me that what i said was brilliant, and that he too was proud. That they supported me and whatever came of my run in.

And you know what? It felt good. It felt good not to have to pretend, to not have to wonder about what would happen when i finally did see my old leaders. And I'm proud of what i did and what i said. I feel like a weight has been lifted off of me. Like i came away stronger. To know that i am no longer under them, subject to them or afraid of them. Like despite what they told me, i am stronger then they are! I am a kinder, more understanding, amazing person and nothing they said holds any weight anymore. They and their words are insignificant. I'm so much more then what my old church made me.

Prayer?

Two men submit their job applications. One prays to god as he waits, the other waits. They both get accepted. One praises god as he throws his hands up in joy, the other throws his hands up in joy.

Two men are waiting for parole. One prays and worries, the other worries. They both walk free. One thanks god as he leaves, the other leaves.

Two men have a cold. One prays to get better as he drives to work, the other drives to work. They both go home with a cold. One thanks god he got through the day as he goes to sleep, the other goes to sleep.

Two men need money. One prays and asks his parents, the other asks his parents. Both their parents love them and give them money. One thanks god as he says thank you, the other says thank you.

Does prayer even matter?

Currents and Tides

If you've ever felt the deep swell of the ocean, you will know what goes on in my chest when struck with grief, anger, frustration, love, confusion, peace, despair. The pull, the release, the damage, the beauty, all of them responding to the pull of my heart like the waves to the pull of the moon. And all of these rooted in undercurrents too deep and hidden to be seen. As the waves seem to start from the depth and move their way up, as do the feelings that grip my body. All my experiences and emotions cultivating into a powerful wave. The wave the only visible evidence of what is going on in it's depths. Nothing I feel feels shallow. I try and fake shallow to hide the destructiveness that i surly would bring if left unretained. The weight that i would bring to conversations, to arguments. How do i open up a storm that in it's self threatens to overtake and break me? How do i trust that someone else would be able to stand after seeing this ocean? I've come to learn that most of the world does not have this reservoir within them. That they don't have the currents, the pull, the terrifying and uncontrollable driving depth to them. How then, can they understand that my words carry the weight of the tide? That when i say i am wounded, i mean it to my core. That when i say i am frightened, i shake in my depths. That when say i am angry, you can see it's dark storm behind my eyes. They are able shake off life, distract themselves with other agendas, but how do i distract the currents? How do i distract the tide?

More on Spoons

I was thinking about the Spoon Theory article this morning as i was deciding whether I had enough "spoons" to style my hair or if i should just put in a pony tail. I went for the pony tail. I've been pushing myself too hard this week and am paying for it right now. I have to miss a friend's going away party tonight because my sleep schedule currently has me going to bed at 3pm and i don't have the energy to force myself to stay up for it. The problem is that its at my house (i live with my parents right now). I know that I'm probably over reacting, but "i need to sleep" just doesn't sound like a valid excuse to missing a friends going away party that takes seemingly no effort to attend, and while "I need to sleep because my stomach has been hurting, my muscles are achy and weak, I have no energy, my body is exhausted, my mind is foggy, and i generally feel like shit and it's all making me rather depressed right now" is valid, it just seems way to heavy to tell someone. Sigh... I know that no one will hold it against me, but still. I feel bad, and i hate that my life is ruled by this stupid condition.

However, there is hope. My Dr. prescribed me a new type of thyroid medicine at the beginning of the month, and last week i was feeling more energetic and healthy then i ever have before. Of course then i got cocky and proceeded to run my body into the ground this week, but i hope that after a few weeks of resting and being good i will begin to heal up again. I hope so, i really liked having enough spoons to go on not one, but TWO errands in the afternoon and still have enough energy to hang out with people that evening! I know, "Whoa dream big!" (said in Juno's voice), but at this point that sounds heavenly.

The Spoon Theory

This article is brilliant. It's the best explanation I've ever heard about what it's like to live with any level of debilitating illness. If you know anyone with a condition that effects their "spoon" count, then read this. It will help you understand them:


The Spoon Theory
by Christine Miserandino
www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night. When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".

My God Gregory

For the last week or so, I've been trying to separate the messed up version of god from what he is really like (The Shack's God opposed to the God of the Bible). I went to see the movie "There Will be Blood" today, and in it there is a very grotesque scene where the Pastor of the local church is praying for healing over this older lady. I swear i have seen that scene so many times before. The congregation all tranced out and babbling in tongues, the Pastor yelling for the demon to come out. It took everything in me not to run from that theater because i knew the people with me would know exactly why i left and i didn't know how they would feel about my reaction (yeah, I'm not quite that brave yet - see my previous post for more on that). But I realized at that point, there is no way at the present for me to say the word god, and not think of everything that i hated about church and the god i learned about there. That playing on the screen before me was exactly the persona that i acquainted the word "God" with. Yahweh, Lord, I Am, even Papa, were all names given to the god of the bible. The god that i hated. I realized then that i would never be able to separate the real god from my old view of him while i was calling them the same name. It would always carry the flavor of the messed up things that i equated with the word. To me, God had become this entity with a personality that I couldn't shake, so the name God was right out. I racked my brain thinking of something i could call this new god. That i could call the Shack's god. The god that would create the wonder of nature, the depth of the ocean, the beautiful pale blue light that pours from a full moon, a god who would trade his life because he loved me. And the only name that popped into my head, the name that i couldn't shake after it had been presented was, Gregory. That's right, my god Gregory. I think i laughed out loud when i thought of it. I had this entity, this blank canvas on which to find and paint a new picture of what god was really like, and i named it Gregory. I named him Gregory. I tried to find something more holy, Father, Papa, Jesus (who i still kind of liked, so that name was taken), the "I Am"... nope. nothing fit like Gregory did. I've never known a Gregory. I don't have any preconceived notions as to what his personality would be like. And now, it just feels like I'm on this journey, this quest to find out what Gregory is like. And now, for some reason, when people talk about god, i can separate the two and figure out if they are talking about the old god, or Gregory. And you know what, I think i really like Greg.

I don't know where this is going to end up. I don't know if it's good, or right, or will lead me straight into heresy and another messed up view about who god is, but honestly, i think it's the first time in a very long while that i have been able to think about god and smile. So maybe that's worth something.

Follow up to my Rambling

It's been an interesting few days since my last post. I've started testing the waters outside my shell. I've actually taken the risk to talk with people about the whole church thing a cupple times this week. They were all on verifying levels of openness as far as what i could say, but the fact is that i was able to say something, and they didn't hate me. Infact, they were all very understanding, and talked with me through it when they didn't understand or agree with something i said. I'm still scared to be open with people, and will continue to be very careful as to what i say, but when the opportunity presents it's self, i hope i keep up the courage to be open.

A girl whom i was in a small group with at my old church called me up to hang out last week. She had left before i did, and i had seen her a few times since i had moved back home, but it was never anything too personal. It was mostly in larger groups at an open mike night that a local campus ministry held (It is the one church event i go to, mostly because the people there are so kind and open and don't care that i don't go to their sunday morning service. A cupple of them used to go to my old church and had left as well, so i knew them a little.) Anyway, i hung out with this girl and another guy that had just recently left the church, and as we were dropping him off, we all struck up a conversation about it, and proceeded to talk for the next hour or so. It was the most amazing night i have had in such a long time. It was the first time i was able to be even remotely honest with anyone besides my mom. They didn't care if i was angry, or bitter, or having a hard time dealing with what had happened, and the more i shared with them, the more understanding they were and the more i felt like i could share. Looking back, I didn't actually share that much with them, as I am still going to be very careful about what i say to people, (i am not that brave yet). Actually, I think I mostly asked them questions about their experiences. And they didn't mind me asking questions about their god, or about what had happened to cause their leaving or past churches they had attended. Infact, it was appreciated.

I think most of all, it was just healing to feel understood. To feel like i could come out of my walls and breath for a while in a safe place. They didn't blame me for leaving, or for what happened at the old church. It has been so long since I've been around people that i felt like I could tell stuff to, and they wouldn't ditch me for being too messed up or "spiritually unhealthy". It's so wonderful to have even the possibility of a relationship that is not built on church politics or what my leaders would approve of. A relationship where I'm not afraid they are going to run or distance themselves at the first sign of something wrong. The girl that i talked with, she especially makes me want to trust her. She is the kindest, most loving and genuine person i have ever encountered. I very much hope that our friendship continues to grow.