Posts Tagged ‘atelophobia’

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More than just a necklace

May 25, 2016

Today i found one of my most prized possessions, a necklace made for me by one of my most favorite people that i thought had fallen between the cracks of some furniture but was just tangled in with some other jewelry. On it hangs a single spoon and the words “Just Breathe”. The two of us both have invisible illnesses and have shared many conversations about the frustrations that come along with them. One day i came across the Spoon Theory and shared it and then for my birthday i got this amazing necklace that she made just for me.

 

i cried a lot when i found my necklace today because it means so much to me but also because lately i haven’t had many spoons in my hands to go through my days with but today i found one more and that gave me more strength than i can explain.

 

The Spoon Theory

by Christine Miserandino http://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.

Cartoon image of Christine Miserandino holding a spoon
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”.

© Christine Miserandino

– See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.Zs8guYq2.dpuf

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Sometimes the keyboard is mightier than the blade

February 26, 2015

i haven’t posted in forever because i’ve been feeling trapped. Trapped in my head, in my apartment, in my job, in this state, in certain relationships, and on and on and on. It seems like no matter where i turn to try and escape everything gets a little smaller. And this isn’t like a claustrophobic thing. The walls aren’t closing in on me. It’s more like a cartoon quicksand thing i guess. . . i keep trying to get away from everything and going under faster and faster. But i don’t know that the cartoon idea of holding still would make things any better either.

This monster is cruel. Because it is still there even when i feel strong. The anxiety, the panic, the doubt, and everything else that spirals into that dark place that i can’t ever fucking seem to get away from.

None of these words are right and if i feel trapped by my words i don’t know what i have left. i’ve been lying to so many people. Either by omission or flat out. Well enough that someone said to me something along the lines of i’ve seen you when you are depressed and this is definitely something different. And i guess it is different. Because i was asking for help and i was writing it out and that turned on me, again. i don’t want to have one more person get close to me just so they can rip it all away. And people say those people don’t deserve me in their lives and maybe that’s true but it can only happen so many times before you start to see all the things they said you were.

And then it’s only a matter of time for me before it feels like the only real friends i have, who will always be there, are small and silver and sharp. Then those scars start to look like comfort again and not like battle wounds. And i did. i fell off my streak, yet again while i’ve not been posting, because i can’t seem to do anything without fucking it up.

So why am i posting now? Because i was dumb enough to watch a movie on Netflix that i’ve been wanting to see since i heard they were making it Call Me Crazy: A Five Film and of course it triggered a shit ton of everything. Because each short had bits and pieces of my life flashing before me and i wanted to throw up but i couldn’t stop watching.

So i remembered a few things, however softly the message was whispered through the din of negativity that slams around in my head.

First of all this mental health shit wants us to feel alone. That’s why they are monsters. Because we aren’t alone. Even if we haven’t found our people in front of us they are out there because someone out there felt enough of what i feel to make me feel like a bit of my life was in that short.

And secondly i don’t want to live my life being a lesser version of myself. i don’t want to lie to people or feel like i can’t contribute to a conversation because some negative voice inside is telling me that i’m not worthy enough to participate. i don’t want to hold the people closest to me at arm’s length so they can’t see what is really happening with me. The things i love most about my friends and my chosen family are some of their quirks- not their perfection. i shouldn’t hold myself to any different standard.

So once again, here i go on this journey. Right now i don’t particularly want to be anywhere but as i don’t have that choice i’ll try not to disappear.

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People don’t completely suck and some of them are pretty amazing.

August 20, 2014

i have been reminded today that as much doubt, emptiness, fear, anger, and whatever else i’m feeling right now, depression really does lie.

 

i was reminded that some gifts are non-returnable. So even if connections with people are broken and severed, the lessons i learned and the challenges i overcame because of those people can never be taken away from me. It might be hard for me to realize the integrity of those gifts may not have been as pure as i had thought but they’re mine now nonetheless. 

 

i still want to find a cave right now. But at least i know i have some really good stuff waiting when i come out. 

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We’re all mad here, just not necessarily at the right people

August 19, 2014

There are things in the world right now that i want to be angry with. People i want to be angry at. But the depression monster likes to lie. So instead i’m just angry at myself right now. 

 

i’m angry because people tell me i need to not be so hard on myself right now and i can’t seem to even do that when i need to most of all. i’m angry because i just want to push everyone away and be alone. And because i don’t want to be alone either but i can’t figure out what i do want. i’m so mad because i have some of the most incredible people in my life and i don’t know how to handle that right now because i don’t think i’ve ever had so much support, sad and mad because it took this long to find that support.  i’m pissy because my knee hurts right now and because i didn’t go to physical therapy today. 

 

A lot of that is just surface stuff. i can’t seem to stop there. i can feel rage and a barrage of questions, why couldn’t i be the daughter/friend/girlfriend/person  X wanted? Why did i have to fuck everything up all over again? Why can’t i just shut up right now? When will i ever not think about picking up a razor blade to fix things? 

 

i’m trying to step out of my head and tell myself that every moment that i am here, writing, being, whatevering is something for me to not be angry about. But anger is something i need help with. i wasn’t allowed to express anger growing up so it all turned inward. i know that. So now i still have problems figuring out how to express anger and direct it places other than at me. And i am angry at the depression monster but depression is part of me so i just get stuck in a limbo. 

 

When someone does something to make me mad, i turn it around that i shouldn’t have trusted/connected/believed/etc. i should have known better. What is the use at being angry at that person because i can’t change that person- i can try to change me so i should be mad at me. But being mad at myself isn’t productive. It doesn’t get me anywhere except further info the vortex of negative voices in my head. So where do i put these emotions? How do they work? And can i retrain myself to figure this out? i really don’t like me right now- i don’t want to be around me right now so how do i reconcile all that anger i have toward myself and trying to keep holding onto the desire to wade through all this shittiness and come out stronger for next time? 

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Surrounded by way too many people but still way too alone

August 18, 2014

Questions and doubts are the only things that seem to be playing in my head. Trying to remind myself that this is just all part of the game the monster likes to play with me and then questioning whether i believe that or not. Wondering if it is actually worth making connections with people when i know i will never be good enough for what they deserve. And wondering if, in standing up for what i believe if i feel better standing alone right now or not. 

 

i don’t want to see people. Because i don’t want to have to pretend to be whatever i’m not right now. And we say it’s okay to not do that. We say we can be honest with people. And maybe that’s true, behind the closed doors of your home with a close friend. Or whispered with one person who you might be able to trust but you aren’t sure because trust is kind of for suckers anyway. i can’t be how i am right now around people without every wrong question being asked, look being given, hearing every sigh or seeing every eye rolling. And maybe even if that wasn’t the case i wouldn’t want to see people. i don’t know. Right now i feel broken. Not “unfixable” but kind of like a chain that falls off on a bike sometimes. i don’t want to be around people when i’m broken. 

 

The questions roll on and on and on, is it really that i don’t want to be around people or do i doubt that people want to be around me? Am i scared of what they will think of me when they see me broken?  How do people muster up the energy to speak to other people? Why can’t i just fake it for days and weeks anymore? Was that really better? Why can’t i have brain chemistry that works? Why is it so wrong to want to relieve all the pressure? What would people think if they knew how many hypothetical questions i asked and then googled? Should i be worried about those questions? Do i even deserve to be asking those questions? Why can’t someone who cares more than i do right now be doing this? 

 

i want to say this writing thing is worthless but i know it isn’t. i know it helps me. i know it is something solid for me to grasp when nothing else seems graspable. But right now, at this moment, it feels worthless. It feels like something no one cares about, something i do because someone else suggested it was a better thing to do than my other coping mechanisms. It feels like words that i am standing at the top of a cliff screaming and no one is hearing. And it isn’t a matter of page views or comments or anything like that. It’s just a matter of writing these stream of consciousness things and then still feeling like i’m standing alone at the top of the cliff. There’s no immediate relief. The monster can burrow into every crevice so quickly but needs all the time in the world to find its way out.

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trying to write through the really big and the really little.

August 17, 2014

When i was younger there was a bread factory in town that you could take tours at. We went for school and for Girl Scouts. My favorite part of that tour was at the end when they gave each of us our very own miniature loaf of bread. i would take mine to my grandma and she would slice it up and make miniature sandwiches for me.

 

i like miniature things. They feel so easy to conquer. i could put a whole sandwich in my mouth like a giant and think nothing of it. They don’t seem so scary or make me feel so vulnerable. 

 

But right now i keep looking around inside my head and everything seems humongous. The darkness does a great job of covering all of it. And the anxiety likes to form paths. But i just want to stop. Not move. Not talk. Not think. Not be. 

 

My voice feels pointless when everything towers over me. A tiny squeak even i can barely hear. My brain, which is me, but doesn’t feel connected right now keeps rattling off all the things i should have said and done and worn and read and not said and not done. It compiles a list of each imperfection and an explanation of how that will cause failure at some point. 

 

i don’t know if it is a success to look at pictures of scars rather than to create more of my own. Nothing is right right now. 

 

i want to feel like a giant in my head again. i want to eat miniature sandwiches and find words that make noises. i want to just sleep.

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Yes, cement trucks. And why i apologize a lot.

April 19, 2013

We all have things we fear. There are those tangible things- for me it’s thunder and lightning and cement trucks. Obviously there are different levels of these fears. Some people are so scared of flying they can’t even go to an airport. Others just need to take an anti anxiety pill to get through it.

 

The harder things, for me anyway, are the not so tangible fears. i have a serious fear of abandonment and i deal with atelophobia (the fear of not being good enough or imperfection.) These play so hand in hand it is ridiculous. i am so constantly scared that if i don’t say things exactly right or do things exactly the way someone expects them to be done that i will lose that person. i can see that these things aren’t logical. i get that while i was in college if i would have spoken in class and answered something incorrectly i wouldn’t have been laughed at and thrown out of school but i was terrified of that.

 

Sometimes i am so scared of people leaving that i will hold onto unhealthy relationships because at least it is something, at least i’m not alone. It’s not easy to sort out the knowledge and hard evidence from the kudzu like fear that covers everything.

 

i know and completely understand that people have bad days. i obviously have bad days, why wouldn’t anyone else. But for whatever reason, especially if i really care about someone or respect them and i can’t put a finger on why (and not in a nosy type way) they are having that off day the gears in my brain start turing until i am convinced that i did something to cause it. i want nothing more than to go and apologize. i want to fix it. i read into things that probably aren’t there. And it will repeat over and over and over in my head. The tears will start at any given moment. And i feel so defeated because if that person has me feeling like that it means that i’m not, at that moment, in a position to push that person away myself to avoid getting hurt, i already am.

 

i will start making lists of all the things that are wrong with me, that i screwed up in one way or another, things i did that i shouldn’t have and things i didn’t do that i should have. Things i said that were the wrong words or the wrong time. Every little thing.

 

So while i’m sitting there crying or trying not to and fearing that i will lose this person because i wasn’t good enough in some multitude of ways, i start to get angry at the same time. At myself. And i don’t always know how to deal with that anger. i know how i want to deal with it but i also realize that i shouldn’t reach for the blade. And then there is this whole spiral of a melt down. i hate myself for cutting, i think that if i was good enough at dealing with emotions and life that i wouldn’t need that. i think about what a failure i feel like when i succumb to to the desire. i think about how i don’t deserve people in my life to begin with and how i will inevitably fuck up every relationship i have in some way. i think about how scared i will be if i don’t have people in my life and try to figure out how i can be perfect and not lose the people i have. Then how i will never be perfect and i hate myself for that.

 

It’s exhausting. i feel like Sisyphus. i’m trying to write this out so maybe i can come back and see how preposterous all of these thoughts are. i’m trying to get better at talking about when i feel like this though that one is still really hard. i’m trying to remind myself that a step forward is a step forward no matter how small or how long it takes to make.