Posts Tagged ‘confusion’

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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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Saying goodbye to the biggest piece of my heart.

October 15, 2015

i’ve talked before about how i believe the world works the way it is supposed to.

i’m having more than a little trouble understanding it at the moment. i know we aren’t always going to understand- and it may take time to see the big picture. But quite honestly, at this moment in time, i don’t want a big picture, i don’t want the future to come with answers, all i want is to turn back time.

September 12 was one of the worst days of my life. And i am trying to constantly remind myself of the year and a half of magic that led up to that day.

You see, 2013 was a year of ginormous changes in my life. They were good changes but hard ones. They happened in a way that i wasn’t emotionally prepared for and the depression monster became my closest frienemy. But in December of that year while i was struggling to make it through each day i learned that there might be a light in my future in the form of an emotional support animal.

i have always had a connection with animals- dogs especially. Growing up in the household i did my dogs were my protectors, my confidantes, and the greatest source of love. In college i had a pet fish who died, some friends wanted to know what would make me feel better as i sobbed. All i wanted was my dog. They couldn’t give me this so they went and bought me one of those electronic dogs that was so popular for a bit.

i spoke with my doctor, she agreed this was a good plan and something that would help me. And at some point in January of 2014, i started seriously looking at Petfinder to see who was out there. i saw so many faces and stories that touched my heart and then one night i stopped. i saw a face looking at me and i knew. i knew with no doubt i had found the answer i had been looking for.

On January 14 i drove about an hour and a half, it had snowed recently. Usually i am terrified to drive on slippery roads, i’ll avoid it at all costs but it felt like the middle of summer to me that day. When i pulled up to the shelter my heart was pounding in my ears, my mouth felt dry. i was anxious and excited. i started panicking that someone had come for her earlier that morning.

i walked in and let them know which dog i was there to see and the woman said, “Are you sure?” She went on to tell me how this dog was too wild for all the people who had come for her before. How she had been at the shelter for over 6 months- had had a major surgery. She finally let me know she would bring her out and i could see what i thought, she had a look of doubt and amusement on her face. Like she knew once i saw this animal i would turn around and walk out the door.

They brought her out and she jumped up to sniff me, i sat on the ground and she crawled into my lap, rolled on her back and looked up like she were saying, “rub my tummy and let’s go home.” And that’s what we did.

In the car she was nervous at first, she didn’t want to explore anything but the floor of the passenger’s seat. And then i started singing along with my music. She crawled up to the seat and started licking my face, she would stop and stare when a song changed and when i started singing more kisses. She started watching the other cars on the road- she loved them. Even when we stopped to pick her up some new treats and toys she wanted to stay in the parking lot and just watch the cars driving.

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The next day i gave her a bath and she fell asleep in my arms while drying off. i knew that this was the best relationship i had ever opened the door to.

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My Maguire was named after Robin Williams’ character in Good Will Hunting. Those of you who have read my previous posts know how much that movie means to me. Sean Maguire says things that hit my brain in ways other words have never been able to. And since she was my emotional support dog she was like a little therapist herself. i thought it was fitting.

The difference in my well being was astronomical. There are so many people who can tell you this. Not only did i have someone constantly beside me to face whatever demons crawled into my head but i had someone there who i knew i had to be there for. i had to get up each day to get food and water and trips outside. i couldn’t hide away the way i could before.

When i tore my ACL Maguire would greet me like normal but when it came time to snuggle she would rest with her head on my knee like she was protecting it from anything else happening. We practiced jumping through a hula hoop while i was recovering from surgery so she would still get exercise and fun while i wasn’t able to do as much.

She loved her aunties. One day one of them came to visit and i kept trying to do other things so Maguire would spend time with her. It wasn’t until i sat down and she was able to fully greet me and make sure i was okay that she went and crawled into someone else’s lap.

She refused to sleep without touching me. In the winter she was under the blankets curled up right next to me and in the summer when she got warm, she would stretch her paws so they were touching part of me and then fall asleep.

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To say i was in love would be an understatement. My heart has never been filled with the love and magical-ness of anything like this before. At my college reunion people commented about her in the same way i asked and commented about their children. i was so proud. My Girl Scouts would ask to see pictures. And almost everyone i ran into at work mentioned her. She was my world, my light, my heart.

So when i got home on September 12, i didn’t know that my world was going to change. Maguire greeted me like always- we had our mom just got home from work talk and snuggle in her chair and then came to snuggle more in bed. About an hour or so later everything changed. i knew something was wrong, i thought maybe she had a tummy bug. We went to the vet and by the time we arrived she had gotten even worse. After way to much time waiting and running tests they suggested i take her to the emergency vet. We sped out there to find that no one had any answers. She was deteriorating more and more and i was trying to be strong but i couldn’t stop crying. We decided to try a course of treatment and see what happened. A few hours later i got a call telling me that she had only gotten worse. The doctor said she had never seen anything like it in a dog. Whatever was happening was in her brain and it wasn’t stopping. My heart was breaking- i’ve never felt anything like it. And i said yes when she asked if i wanted to stop her suffering. i drove out in a blur of tears and they brought her in on a table, she couldn’t walk anymore, she was blind in one eye. She was trying to dig into the air as they put her on the ground and told me i could have as much time with her as i wanted. i curled up next to her and started talking while the tears poured out. Her paws stopped and rested on my tummy. i apologized to her for the day and for anything else i might have done to cause her suffering like this. i told her how much i loved her over and over and over again. i gave her kisses and i hid my face in her neck and sobbed while begging her not to leave me. i don’t know how long i was there- it never would have been enough time. i got up to get the doctor and she started digging again. The doctor came in and i curled up next to her again and held her while the shot was injected. i held her after. i didn’t know if i was going to be able to let go.

And now there is nothing. No clicking of nails on the wood floor. No protective barking when the neighbors get loud. Everywhere i look is a reminder. And all i can think is, why? Why her? Why me? Why in that way?  Because as whiny and cliche as it sounds, it isn’t fair. And the truth is, i need her. i still need her so much.

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Sometimes i have a good day, or hour, or few minutes, and then something reminds me and i can feel my heart being torn all over again. It never stops hurting.

Some people don’t understand, to them she was a dog. She wasn’t a dog to me. She was everything. You don’t ask someone who has lost a spouse or a child if they are going to go find a new one but they ask me that. i can’t look at a picture of any dog without making comparisons to Maguire or cursing it for not being her right now- i know that in time my heart will be open again but right now it is grieving and i don’t know when my next step in that process is.

It’s taken a few times sitting in front of this screen to be able to get this far. It has been a daily struggle to deal with the world and my own brain. i don’t have a pair of paws jumping onto my tummy in the morning to force me out of bed. i don’t have eyes looking at me or a body getting comfy on my head when i want to reach for a sharp object. And thus far i’ve been able to avoid those objects but i worry about how long that will last.

i’ve been shutting the world out, shutting people out. It isn’t so much that i want to be alone, though that is the only way i know how to put words to it. It is more like none of the world is Maguire and i don’t know how to talk about everything very well yet. All the words and the emotions feel like mush and i don’t know how to take that mush and turn it into a conversation or a moment in time with another being.

i’ve talked in the past about fighting this monster- there is a part of me, right now, that thinks. . . what’s the point? Because the things and people i love all just go away. Everybody leaves, my heart is always going to be crushed over and over and over again. So why try and fight? Why ask for help when i’m just going to end up alone anyway?

i’m lucky to have people in my life who don’t let me listen to that very long. But it’s a struggle. It’s hard work to fight while you feel so defeated. And hard to push through when you don’t see anything at the end to be fighting for. No amount of hard work or fight will bring Maguire back.

So i struggle, every single day. And this along with my fucking uterus has made for one of the most mentally and physically painful months that i can remember. i’ve been trying to take each day one moment at a time- that’s all i can do right now. Grief takes time. Our society doesn’t allow for that. We hear time and time again that you can take as much time as you need, and that in time things will feel better but there is no magic Delorean out there providing this time for us. We are expected to take that time around the schedule of everyone else- grieve as long as you want, as long as you don’t miss work and perform to normal standards. Grieve in your way, as long as you are still a functioning member of society. The pressure is enormous and makes my head want to explode.

i’m not saying this to call out any particular person or group. But it is hard enough to deal with mental health bullshit every single day. There are still so many taboos and fears. When you add a traumatic experience on top and are made to feel like those things don’t matter- that you just aren’t strong enough or trying hard enough it’s a recipe for disaster. i know this, i’ve eaten disaster more times than i’d like to remember.

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i’ve taken some steps to get help through all this and i’m trying to be proud of myself for that. i know Maguire would be.

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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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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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i’m looking for baggage that goes with mine

August 23, 2013

There are certain people in the world who can say things and they mean so much more than if someone else were to say them.

 

On the other hand those people tend to be able to hurt you more with the things they say or more often don’t say.

 

My heart hurts for so many reasons. i have decisions to make. i don’t want to make any of these decisions. i don’t want certain things to change. 

 

i know that is a pointless wish. Things change. Life is one big constant change. i am ever-changing so i can’t expect other people not to be. And while there are some people who i wish more than anything to change there are others who i want to stay the way they are so i can maintain the relationship i have with them in that moment when it feels right. 

 

And the thing is, i know that one of the best things about any relationship is how it changes and grows. It’s just that sometimes i feel like it grows faster than i do and i get left behind. 

 

Had a bit of a flash from my past today. It made me wonder what is wrong with me that some people come into my life and i think they are perfect (not literally, but you know) and things go horribly wrong. i do everything i can to fix things and these people just turn out to be not good people. i’m trying not to exagerate- i have multiple sources backing me up in the fact that these were really sort of shitty people. But i worked so hard to hold onto that relationship and make everything better because i thought that if i could just change something about me that things would be all better. And, of course, they weren’t and those people ended up out of my life. But then i see them or hear about them later on down the road and they seem to be different people and i wonder why they couldn’t be that with me. What did i do wrong that made them treat me like that and what didn’t i do that made it get better.

 

i know, and i’m grateful that these people aren’t in my life. i really am. But at the same time when i see them looking happy i feel a slight twinge of why isn’t that me? What is so wrong with me that i am still sitting here alone?

 

Honestly if i were anyone out there i probably wouldn’t want to come near me either. i’m fucked up. i know, i know. . . we’re all fucked up. But apparently i am more so and i wear it like a tattoo on my forehead. 

It’s hard to balance wanting to disappear and be alone with being so damn lonely. They aren’t conflicting desires. They sit alongside each other peacefully both tugging at my heart and brain equally.

 

Oh writing, you leave me tangled.