Posts Tagged ‘friendship’

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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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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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Accio stress relief and how life is sort of like polyjuice when it comes down to it

September 10, 2013

i should be sleeping. But as seems to be normal these days, my mind is having problems shutting down.

 

i’ve had a headache for too long. Long enough to make me worry about having to visit the neurologist all over again. i don’t have the time or money for that. i don’t want to be poked and prodded and filled with radioactive liquid or have to wash the glue out of my hair from the sensors all over again. The likelihood is that this is from stress. i’ve been trying to remain unstressed and not worried about things.

 

i am terrible at this.

 

Last night i sobbed after getting to the chapter in Harry Potter and the Half-Blood Prince, you know the one. And i actually felt some relief. Like i was finally releasing some of the pressure that was building. i did it all over again tonight while watching the movie and it didn’t help, so that glimmer of hope went down the drain. But i admit, going back to Hogwarts in print and film brings me some solace. i feel such a connection to it all that i can actually imagine not being alone in the world.

 

That sounds more grim than it is. i know i’m not alone in the world. i have remarkable friends. They are like my patronus. But it doesn’t mean that sometimes, even a lot of times, i don’t feel like i’m wearing a horcrux that is sucking all of the good warm thoughts and feelings out and leaving me to see the world and the people around me as less than what they really are.

 

And that’s sad really. Because we all do that. We all feel like that sometimes. And it puts us in this position of being and acting guarded even when we might not need to be. The other day i read an exchange on facebook, it was mostly between one family, one member of which i consider to be a friend. (i would like to say good friend here and maybe they would allow that but it has been so long and i take responsibility for that. Though judging by recent exchanges i know my friendship towards this person have only grown with time.) Now this conversation was one i felt like i was eavesdropping on but it was shared so i tried not to feel too bad. But as i read i felt worse and worse, not because i felt like i shouldn’t be reading these words but because i didn’t know about so much of it. There was so much there that i was completely blind to. And i thought back to high school when i met this person and how much fun we had and how i counted on her, maybe even depended on, for a smile at times when i didn’t think i would be able to find one. And strength when i lost mine. But i realize now how little we both knew about one another. We both saw what we wanted the other to see or perhaps what we wanted to see in the other.

 

Now maybe this was an unconscious and mutual decision. Maybe we both had so much darkness that we needed to find the light in each other instead of sharing and possibly feeding off the dark. Or maybe we were so trapped in our darkness that we didn’t realize how much help or support we could have been to one another. i can’t go back in time so i’ll never know the real answer. But i do know that i continue to do this. i break little pieces off and offer them to people, while never handing them a whole me. i am terrified to give them more. i feel like if i don’t give them everything – and this goes for even my very closest friends- that i can’t completely fall apart and be destroyed by it.

 

How scary is that? i sound like Voldemort. Like i’m splitting myself into pieces so that i can’t be killed. And in an essence that’s exactly it. i am like him. i hate that about myself. i hate being scared of love and friendship and connection. Now i would never use that fear the way he did. But maybe the way Snape did and that’s just as bad. i don’t want to play a part that forces me to mask everything that is inside me good or bad until the very end.

 

It’s one step at a time even if that step is backwards. Everything is just one thing at a time and that seems a lot easier to tackle than the whole world.

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The world also showed me i might have a popsicle addiction and how much i love impromptu dance parties

May 28, 2013

It’s been a few days. But the good news is that it’s just because i’ve been busy not because i’ve been trying to disappear.

 

This week the world has shown me a few different things.

 

First of all, the friends and the families that we choose to be a part of come in all shapes and sizes. Of course, i knew this before. But sometimes the people that we feel the deepest connections to are not the ones we would pick ourselves if we had to go to a store and guess which person would be the best for us. And sometimes we just have to wait for the right time and place for those paths to cross. For example, one of my closest friends graduated the same year i did, from the same college. We started at the same time and knew who each other were but never got to know each other until our junior year when Junior Production threw us in the same space. It was sort of like two lego pieces finally fitting together. Not that we are ridiculously hard to separate (though we do tend to talk for hours when we are together) but that we just fit so perfectly as friends. i never ever would have thought that about her before that moment. But as usual, the world knows more than i do and places these amazing people in my way so i can’t avoid them, often times when i most need them. i am gigantically thankful for this. There aren’t a lot of people that you can really peel back layer after layer after layer and have them love you through all of it. And i think that when it comes from a person you didn’t expect it to it makes your mind shift a little bit to see the world a little clearer and helps you remember that overall in the grand scheme of things you don’t really know much but the one thing that is for sure is that you can get love and you can sure as hell give it- even when you weren’t expecting it. . . especially when you weren’t expecting it. Those are the times love is needed the most.

 

Secondly, you know how a lot of people have that moment where they realize their parents are human? i realized that before i knew what it was to realize that. But, as i’ve mentioned before, i’m kind of stunted emotionally. In many ways i had to grow up really fast but in others i didn’t really grow up at all. i think, because of this i tend to have that moment of realizing the human-ness of people i look up to, or admire, or respect. It can be a hard and sometimes painful realization. It can shatter every picture i have in my head. Maybe that’s the best thing to happen but it feels horrible at the time. i’m trying to remind myself that people are all just people. That no matter how awesome i think someone is or how much i look up to them, they can still make mistakes. They might say or do something that upsets me. And the biggest thing i’m trying to remember is that those things don’t have to mean that i did something wrong. They don’t mean that person thinks less of me. And they don’t mean that i have to run away or push away a relationship that i have established. None of these are easy for me and none of them are my first instinct but i know they will serve me so much better than the other choices. This also carries over to other people. i truly believe that a majority of people are just doing the best they can. So i’m trying to remember when people annoy me or drive me crazy with some random thing that they are probably doing the best they can and they’re on a journey too.

 

Lastly, i know that we should worry more about what is on the inside than on the outside. And i do. But, i’m just like most of us. i look in the mirror. i worry about what i see. i fuss over whether clothes look right or if i used makeup correctly. And those superficial surface things can send me into a spiral of self doubt and self hate. However, i did something recently that i wasn’t aware would make as much of a difference as it did. i dyed my hair (not a natural color) and put my earrings in. i’m working on getting the rest of my piercings put back in. i don’t do this because i want attention. i think we’ve figured out that attention is kind of the last thing i want as far as people looking at me. But there is just something about having my hair dyed, and sometimes mohawked, and my piercings that makes me feel like me. i always felt like that before when i had them in but i didn’t realize what a difference it made when i took them out. i just thought i missed them. Now that they are back in i realized it felt like i was missing part of me. Friends have told me that they are really happy i’m putting them back in. It’s not that i’m not me without those things or that my friends love me less but there is something inherently more whole about me with those things. i don’t know how to explain it but i feel way more confident lately and that’s pretty amazing.