Tuesday, October 25, 2011

What is a spoonie?

I don't think I've ever written about what a spoonie is.  While the name of my blog is Pagan Spoonie, I don't think that everyone knows what I am referring to when I say "spoonie."  Well, its your lucky day, because today I'm going to explain what a spoonie is.

To explain it very briefly, a spoonie is someone who has an invisible illness.  We each have so much energy, or spoons, at the beginning of each day.  The spoons we have are a lot less than the regular amount of energy a "normal" person has.  For instance, I may wake up with only five spoons for the day.  Showering takes two spoons today and cooking takes three.  That means that I probably don't get a shower that day, and I can't cook that day.  Sometimes I can replenish by two spoons if I take a nap.  Sometimes it seems like a nap takes a spoon.  Anyway, if you are totally confused right now, try reading the Spoon Theory in Christine Miserandino.  Here it is:
The Spoon Theory       by Christine Miserandino            www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.Cartoon image of Christine Miserandino holding a spoonAs 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
*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

Saturday, October 8, 2011


The night before last I was meditating while DH slept beside me.  I reached a level of meditation that I hadn't previously done.  I could feel and see the area around me blurring out until it was just me.  The blurring out looked like the heat waves you see coming up off the pavement in the summer.  This is definitely progress.

I was worried that I wouldn't be able to block out the pain good enough to meditate but I've found that meditating while in less pain and in a lot of pain helps to increase my meditation skills and decrease my pain levels.  A few weeks ago I was in a really bad flare (a great increase in pain) and I was able to calm myself down by deep breathing and meditation during a bout of intense pain.  That is definitely both an accomplishment, and a useful skill to have.

Thursday, October 6, 2011

Chapter 2 Exercise from book Paganism, page 57

This blog entry will be answering questions from the book I'm working through right now.

Paganism: An Introduction to Earth Centered Religions

by Joyce & River Higginbotham

ISBN 978-0-7387-0222-3

Paganism by Joyce & River Higginbotham

Take several sheets of paper and mark them as the following.  Go to a quiet place.  What did you believe as a child?  Areas to include are beliefs about yourself, your body, your parents, God, religion, school, responsibility, guilt, sex, what makes you a good or bad person, and what is expected of you.  Do the same for the "teenager," "young adult," and "me now" categories.  

Childhood Beliefs
yourself: I am very special.
your body: It helped me to play hard.
your parents: I had the best Mommy & Daddy in the world.
God: the Father of Jesus
religion: Catholicism. I knew the "Hail Mary" at 4 and it was my favorite prayer.
school: I loved school until I starting getting bullied all the time. Then I hated school
responsibility: I have to make straight A's
guilt: I thought I was "bad" a lot of the time
sex: I thought that sex was gross.
what makes you a good or bad person: Lying, being gay, cheating, being mean to others, hurting a child or animal, and murder make you a bad person.
what is expected of me: to make straight A's.

Teenager Beliefs

yourself: I don't deserve to live. I came out to my mom once and she told me I was wrong. I gave up arguing with her.
your body: is worthless (post-rape trauma).
your parents: I hate them.
God: I'm not sure there is one. I don't believe in Holy Communion or Reconciliation (Confession). I hate going to Mass.
religion: Catholic, but only by force.
school: I hated school. I tried killing myself at school once.
responsibility: I'm not sure.
guilt: Religious guilt, rape-survivor's guilt. Guilt over being a self-injurer-something I kept praying to be able to stop but couldn't.
sex: I thought it was supposed to be better than what I'd experienced
what makes you a good or bad person: committing suicide, stealing, hurting a child or animal, murder, cheating makes you a bad person
what is expected of me: to get scholarships to college

Rosary and Blessed Virgin Mary
Young Adult Beliefs

yourself: No one would love me if they really knew me.  I came out to my mom and she refused to believe I am not straight.
your body: I gained a lot of body self-esteem back when I lost a lot of weight.
your parents: were massively involved in every aspect of my life. I didn't realize the abuse that was going on then, I thought it was all normal.
God: the Father, Jesus the Son, Mary the Mother of God, and Joseph, the step-father of Jesus.
religion: hardcore Catholic. I depended on God to answer my prayers and to do all good things.
school: I knew I belonged in school but jumped around from college to college.
responsibility: I was responsible for being the best Catholic I could be and making good grades in college
guilt: if I didn't pray enough or trust it all in God.
sex: is supposed to be for marriage, but if I do everything but sex I'm not sinning.
what makes you a good or bad person: someone who pretends to be a good Catholic and isn't is a bad person because they are a hypocrite.  Murder, cheating, hurting a child or animal, and stealing are also signs of a bad person.
what is expected of me: to finish college with good grades and to be a good Catholic.

Me Now Beliefs

yourself: I feel so special because DH tells me all the time that I am
your body: is breaking down from my many disabilities but I love it, because my body is trying her hardest to put up the biggest fight she can
your parents: I had the Order of Protection against them (it's a restraining order on steroids) but it expired. Now I just hope that they don't find me.
God: I know believe in the Goddess and the God, and I'm still learning more about them both
religion: Paganism, not even a year yet
school: getting my Masters degree in Professional Writing
responsibility: I get to take responsibility for my own actions, instead of waiting on the Christian God to fix everything.
guilt: I feel "bad" a lot from the years of abuse.
sex: In a monogamous relationship I finally feel safe and happy about sex
what makes you a good or bad person: cheating, stealing, hurting a child or animal, squatting in someone's house and refusing to leave are the signs of a bad person.
what is expected of me: to graduate with my Masters degree

Blessed Be!

After you have finished your sheets take a look at them.  Are there any patterns?  What beliefs haven't changed since childhood?  Pick one or two of the most important of these and write them down separately.  Where did these beliefs come from, and why do you believe they are true, and what influences brought you and now keep you with these beliefs?  Do you think these beliefs are positive or negative for you?  How do they free you and how do they limit you?

One thing that didn't change since childhood is that bad people hurt animals and children, they cheat, and they steal.  Another thing I noticed is that at any time in my life I'm in school and striving for better grades.  I don't think I'm a perfectionist, I think I'm just an academic nerd.  I think these beliefs came from the environment I was raised in.  I've also had a disdain about any kind of cheating my entire life; though I have cheated on homework a couple of times, I wasn't proud.  I believe that these beliefs are positive for me.  They do not feel limiting; I find them to be moral and ethical beliefs.

Now take a look at the beliefs that have changed dramatically from your childhood to now.  Write them down separately.  What happened to bring about these changes?  What were the people, influences, and events that were relevant to these changes?  How did you arrive at your current beliefs?  Do you think they are positive or negative for you?  How do they free you and how do they limit you?

The most dramatic belief change is going from Catholicism to Paganism.  The other one is the relationship with my parents.  I had been losing faith in Catholicism for quite some time.  Then, when my mother had a priest pray over me because of my "evil" ways I went to another priest and asked him if I was still welcome in the Catholic Church.  It came up that I'm pro-gay rights and that pissed the priest off.  It turns out I'm not welcome in the Catholic Church.  This felt very negative at first.  After quite a journey I ended up being a Pagan.  I find this to be a positive experience, I just wish I left Catholicism on better terms.  I feel much freer  happier, and less guilty, being a Pagan.  The reason I had to get an Order of Protection against my parents was for "adult abuse and stalking."  It was a painful experience, but I'm all the better for having them out of my life.  It limits me on going to my parents town, but I don't want to go there anyway, so it doesn't matter.

Three witches celebrating the full moon