Posts Tagged ‘self image’

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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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Peering around corners, facing changes, and finding a new home.

August 27, 2013

The tears are still lurking behind my eyes and my heart is still aching. i have received words of wisdom from some reliable sources and while i am scared and worried i know they are right. However, i couldn’t tackle any of it right now. i needed some time where, even though there is still a weight on my shoulders, i could just have some time filled with things that make me smile. i don’t want to get trapped in a hole i don’t know how to get out of.

 

i’ve gotten better at taking care of myself but i’m still not great at it. i’m still working at it. i don’t like change but it is so often exactly what we need. Sometimes we can’t picture what something would be like differently than we know it. We think that there is no possible way that we could relate/love/care about/interact with/etc things or people in the same way when they have changed. And sadly, sometimes that is the case. But more often what we don’t realize is how much we have changed alongside whatever it is. We live with ourselves every day all the time- we don’t see ourselves the same way other people do. When i look in the mirror i think i look fat and ugly. When i think about myself academically i think that i’m decently smart but there are so many people i know who are absolutely brilliant. When i think about myself emotionally i think i’m slower than remedial. But when i got out of my car the other day wearing my new cowboy boots and the best dress ever feeling super worried that i looked disgusting and that the bottom of the dress would slide up and show my scars Bri was there telling me i looked hot. Other people will tell me they never thought of something the way i did. In my last work review my new supervisor told me what a quick learner i was.

 

All of that is stuff i might work for and strive for but don’t always see. i can see the change so easily in other things but not myself. But those changes in me make it possible to keep going as the world around me changes too. i’ve talked before about my childhood library. i could talk about that place for days. i could walk you through the layout and which shelf i found some of my favorite books on. i could tell you about the different chairs that i sat and read in or the different art pieces that came through. i could tell you about music i found there or movies i watched and the hours i spent studying. i felt like a part of me died when we lost our library in the flood. This weekend was the grand opening of our new library. i volunteered to help out on both days so i got to go in early for a tour and such so i would know what i was doing. i was terrified as i walked into the building. i thought that i would love it because it was a library but it would never feel like my library. And in a way that is true. No library will ever take the place of my childhood library. But this place is amazing and it definitely feels like MY library. (i may have threatened to give up my apartment and move in.) It almost felt like i couldn’t breathe because i was so overwhelmed. Our community has worked so hard for this and i know that there are other kids out there like me who are going to find safety and comfort and themselves within those walls.

 

When i was helping out on both days i felt so at home. There are times when i go out and i get looks or comments from people. Whether it is about the fact that i have a pink (or whatever colour) mohawk, or that i have 17 piercings all above my neck. Or maybe about my tattoos or the fact that they think i look queer. When i walked in for my volunteer training the coordinator’s first words were to thank me and then to tell me how much she loved my hair. The three other people i was with were all above 60 i think and they all just loved the fact that i grew up at the other library and knew so much about how the library worked. When i was greeting people to the children’s library on Sunday the only comments i got were positive but mostly people just saw me as someone who loved the library and could answer their questions or comment on the books they picked out. It was awesome. Libraries aren’t often thought of outside the box of a building with books and computers for a lot of people. But for me libraries are a place where you can just be you and no one judges you for it. i’ve moved all over and one of the first things i have always done is get my new library card because even though everything else feels new, that card makes me feel like i’m home and i can get through whatever i need to.

 

That plus chilling with some monsters, celebrating a birthday, and starting to rewatch Anne of Green Gables has made this a pretty okay weekend. i still have to deal with all the shitty stuff and i wasn’t trying to run from it at all, i just needed to remember that not everything is shitty stuff. It’s so easy to find myself with blinders on when i get caught in the claws of the depression beast.