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Mail - April, 2014
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Casey - 20 year old student in the USA who self-invalidates

Teacher from USA -

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Casey - 20 year old student in the USA who self-invalidates

Here is one quote from Casey

I am in contact with my mom (and financially dependent on her), and I have taken (and retaken and retaken lol) that mom quiz. It's a weird one for me because on one hand I tend to answer ~8 of them affirmative, but on the other I'm not sure how much I can trust my own emotions on the subject.

Like, it's totally likely I'm just overreacting to things and making mountains out of molehills (especially because I don't know how much I can trust my own emotions in general?) so it's. Weird I guess. Because it isn't anything physical which just makes it harder for me to quantify and yeah. Rambling, sorry.

Note from SPH to Casey - for me that wasn't rambling.. instead it was very important. It helps me and others see how you self-invalidate, discount, minimize and devalue your own feelings, I hope you will keep reading the site : ) and that we will keep talking.

Teacher from USA  
angela priscilla chat

this isnt fair

i cant do this

 
   
   
   

 

 

University student, Christian, teacher assistant from Nigeria  
Ok, on the kids thing I will discuss with the coordinator
and also get her to take a look at the
H-PET.
>
> One thing I have noticed about looking up here is
people really look up
to Australia ... in Nigeria really look up to the West. Now
this is a
very interesting point you have raised and I will love to
know what your
thoughts are on this. A quick search online and you will see
the terrible
experiences of youths attempting to leave their country for
elsewhere;
and the terrible conditions some find themselves in in those
foreign
lands. You are right on point again on this thought.
>
> I love the H-PET and I am looking at my life within the
framework. Its so
simple, easy and I can't forget this. I will use it again
and again - I
can promise that. Thanks for that.
April 1

I loved the how ok page. It was one of the most memorable information from your site. I read it just before I sent the first mail to you.

 
I believe the Bible and I think that is my main religious belief, especially I believe that loving people is loving God and if anyone does not love others then he doesn't know God.
My project for next year was to produce a Bible that matches our current life experiences.

 

S: I also have another idea. How would you feel about starting a blog yourself which highlights things you have learned from my site? I would then leave comments and make contributions. I just have too many projects going on now to work on my old blog. And right now I need the inspiration from other people. My partner is in England now because of medical problems and I am living alone, quite isolated, in Uruguay, so I often feel pretty alone, which is one factor contributing to my depression on some days. I am trying to invite more Couchsurfing travelers here to keep me company. But for two days no one has been here.

You've got me thinking about the blog now. If there is a platform I can work on from my blackberry phone then it would be a great start, and I tell you there is a lot I can pick out and stress on from your site. I will consider it again, then go through your the whole of your site and let you know the key areas I think I can blog about conveniently.

Yes, Nigeria was a British colony. And the effects of the colonial rule is being suffered up till today, but then what's done is done.

 
April 2

I don't believe in hitting children but back when I was younger it was normal punishment - even in school. But I think we need to make a distinction. There are some so called 'hiding' and I think that is bad. But a corrective hit - kind of a hard pat on the back to get the person to think about what they are doing and adjust to behave properly.

 
You know what the problem with the world is? 'Christians' who do NOT know what God is all about; and those are many. I do not call myself 'Christian' neither do I believe in the tag. If you go through the Bible on children, you will see some great truths. It is said there to 'train up a child', how many parents train? Correction is not all that training is about. Unfortunately most people think beating, hitting etc and such correction is training.

I would rather say the devil is inside parents maybe, not the kids. Most of the wrong things a child does is one way or the other influenced by what is around them. It is complex, but I don't agree kids are bad. They only did not have people to train them on the key things that makes a human being a noble being.

 

 

 

 

[4/10/2014 11:46:46 PM] ang: i....can't find my birth certificate. I feel so bad about it...I need it for the passport...I must have lost it in phoenix. Like...really bad...like 10. i don't even know what to say...and i guess...i have no choice but to get a new one...but it's like $50 and will take 3-5 days to get here. I feel pressured to get the application in like TODAY
[4/10/2014 11:47:19 PM] ang: and like really embarassed and stupid and a lot of awful things I felt when I realized I couldn't find it...
[4/10/2014 11:47:29 PM] Priscilla aw
[4/10/2014 11:47:55 PM] Priscilla wow im sorry...
[4/10/2014 11:48:09 PM] Priscilla hug
[4/10/2014 11:48:12 PM] ang: kinda...god...a little suicidal about it. can't even...
Why am i feeling...afriad? To look through my papers? because i know it's not in there. i can't...expend that much energy right now...on a fruitless effort like that. it will kill me...but I know I have to check anyhow. sometime. someday. soon. asap. either it's there or it's not, but I can't know until I look. But I couldn't find it before I left. I doubt it's there.
and now i feel so stupid and worthless and god.
am I overreacting? I feel like this is a really big deal.
$50 and 3-5  days of my life.
is my life worth that much?
is that worth killing myself over?
is it sad I don't know the answer to that?
my life has 0 worth to me....so I guess I have to ask someone else. I guess I have worth to some people. whatever.. 

It's not just that...it's the immense shame I feel.  embarassemt whatever. whatever.
[4/10/2014 11:48:54 PM] ang: .-.
[4/10/2014 11:49:05 PM] Priscilla aw
[4/10/2014 11:49:30 PM] Priscilla i feel bad u feel so much shame and suicidal about that : (
[4/10/2014 11:51:38 PM] ang: it's like....patti wants me to go to the post office TODAY. but obv i cant now. and idk what to say to her. and....sigh yeah....and I COULD have gotten a replacement in phoenix...I guess...but I didn't. Idk. i guess I couldn't really do anything back there...but then I'm thinking maybe it wasn't the envionment. maybe iT IS JUST ME. i'm lazy and stupid and forgetful. It's not the stress or lack of sleep or whatever else i'm blaming it all on...it's just me.  .-.
[4/10/2014 11:51:46 PM] ang: i'm al the things my mom said
[4/10/2014 11:51:58 PM] ang: "you're just a child pretending to be an adult!"
[4/10/2014 11:52:09 PM] ang: last thing she yelled at me on my way out the door
 
[12:54:48] Angela: oh my god
[12:54:50] Angela: help

 

March 6

Hi there,
I'm sorry, when my depression sets in then nothing gets accomplished, even basic emails. I'm doing ever so slightly better, and hope you are as well.

I feel a bit narcissistic talking about myself, but since you asked, here goes:

I'm 26, living in a relatively small but fairly liberal town in the midwest.

I'm currently trying to finish my thesis (Help-Seeking Attitudes in Hindu and Muslim College Students) to complete my M.A. in clinical psychology. I'm hoping to apply to social psych doctorate programs in the fall, and though I am passionate about multicultural issues, I am considering conducting research on the interaction of various personality traits and attachment disorders. I worked for a year on an inpatient psych unit for children and adolescents with severe behavioral, emotional, and developmental disorders, and that spurred on that interest.

However, I quit in September because it is a disgustingly corrupt for-profit facility that could care less about its patients or staff as long as it's still making money.

Unfortunately I did that before taking on another source of income, so I have been borderline homeless since then. Between student loans and trying to pay for my medications, every day is a struggle and I go to bed hungry a lot. I have dealt with bipolar disorder and existential depression for as long as I can remember. I was actually hospitalized a little over four years ago, and have been relatively stable since then, until these past few months. I'm a very driven and passionate person, so not having a job has been particularly difficult.

I have also been dealing with emotional vulnerability, or I suppose I should say invulnerability. I was quite hurt when my last two relationships ended (understandably), and decided that the risk wasn't worth the potential reward, and have essentially thwarted any prospects for the last two years. I am coming to realize that it is impossible to stemone emotion without inoculating myself to all of them, including joy and love. I am starting to know that this is something I need to work on, allowing myself to be more vulnerable, but my life is still such a mess that it's easier to continue this way until my life is more stable.And that's pretty much where I am now. What about yourself? It's always nice to find a kindred spirit

ashlee

 

 


Hello, Steve.

I'm an American-born human being. I lived overseas while I served honorably in the US Navy, and I got to travel around Europe some. I loved living in Italy, and call it my "home," because I "grew up" there, though I was raised in the States.

Living abroad really helped me to see and embrace culture and views very different from my own, and although I suffered hardships during those times, they were also some of the best in my life. I found my husband in Italy (American service member, also), and I gave birth to our son there, and got pregnant w/ our daughter there. Basically, it saved my life.

You see, I've been in therapy for quite some time. I am a VA certified Disabled American Veteran, for PTSD due to traumas sustained during my military service. However, my story goes even deeper and further back.

The past three years of my therapist--who is a wonderful therapist, who has traveled abroad and even married into a completely different culture-- has been helping me to understand that I endured an "abnormal childhood." I couldn't say it then, but I endured an abusive and neglected childhood.

Last week, on 3 March, I confronted my parents, with my husband at my side, about the abuse from not only my childhood, but continued until even last month! They used all the 'strategies' listed in the book I got today, "Toxic Parents." I had followed my instincts, trusting my instincts, which was very difficult to do. I knew I needed to confront them, and to do it soon after the incident last month.

I tell you this back story to tell you this-- you're website has been incredibly valuable to me this past week. I have only begun to learn the severity of the abuse and neglect, to really "realize" the reality that I lived-- that it wasn't "in my head." Both my older sister and I meet or display the "criteria" for childhood abuse/neglect-- between the two of us, we meet every single one of them.

My path was different from my sister's, though. I was the first one to graduate high school-- I did that in only 3 years (instead of 4) with a "B" average; that was after having been homeschooled for the first 8 years! I served honorably in the Navy. Then I got my Associate's Degree in 1 1/2 years, while giving birth between terms and having a nursing infant that entire time. These are just a couple of my "major" accomplishments. Accomplishments which were diminished subtly by my parents, among other things. I was the "over-achiever" and the "perfectionist."

I understand what you mean about Western culture being corrupt. I see it because my experiences in life have taken me far and wide. I am very grateful to have a therapist who is not a "traditional" therapist; it took me years to find her. I intend to give her the link to your website, because her primary work has been with troubled youth (I'm 36, but definitely got 'stuck" developmentally).

The scope of information on your site is mind-boggling. I find it very under understandable that you're in need of a break and are having a difficult time. It is my hope that sharing my story, and that your site has helped me to learn, will provide an "uplift." I may be only one person, but I certainly value the amount of time you've spent on building the site.

May we all find hope and healing,
~~C.
 
   
Hello, my name is David, and I just recently discovered your website as I
was just looking for things to.. Help me out.. Basically, I just want to
hear your opinion on this. Yes, I am a teenager, and, am, obviously
"troubled", or "different", idk. In short, my mom is threatening to
permanently take my internet away, including weekends. My only and best
friends are on the internet, and they're the only people that can make me
feel even slightly like I belong, and they're the only people that can
understand me. My mom says its because "I've been sitting on it too much",
practically all day on school nights, from 3pm to 10pm, and from 8am-12am
with copious amounts of breaks, and that she wants me to spend more time
with the family. In truth, I don't even want to be around her, because
simply being around her makes me angry and agitated, her looks on life are
just embarrassing in my eyes. She's slightly racist, and makes fun of gay
people, and if she ever catches me crying she'll call me emo, and, I might
as well be, though I don't necessarily self-harm...She always pressures me
to be right and its just so hard to take it anymore. I have no one to talk
to about these things but my friends, and I think they might be the people
that've been keeping me alive the past 3 years. I dont want to tell her
that my friends mean so much to me because I know that she'll resort to
"what, are your friends more important than family?", when my parents dont
even talk to me about anything, and, Im honestly terrified of what else
she'll say. If I cant speak to them anymore, I might go insane, or become
depressed. Am I being stupid and deserve it, or should I try and do
something. Please help.

 
   

I wrote a journal entry on a site I frequent (deviant art) about how my mum treats me and someone told me that my mums being emotionally abusive.

I feel very unsure about that fact (the same one I had when my psychologist said I was twice exceptional), but i talked to my partner (18 years old, I'm 17) about it he said it seems to be because I don't want to believe it. That made me pause and look around on a few sites. I came across this one and some of the things about an emotionally abusive mother seemed to match.


Something I do want to mention is that I am very good at shaping words that sound like they're spoken. There are some exaggerations and omissions of information to make my side sound more dramatic. I've always been an attention seeker. I've lied to mum about numerous things to get attention and she doesn't trust me as a result.


I would never commit suicide and I try hard to help anyone that I find out tries to self harm. You can take your time replying. You are free to use any information in that journal entry and to ask me any questions you want. I really enjoy talking about myself when asked.
I'm so totally sick of everything. Fucking done. Fed up.My home life sucks. It's too difficult for me to deal with. I have a mum who has to have constant attention and can't take no for answer. I can't not do anything she asks because I know the moment I say 'no' she's going to start wondering if I really love her. Her good mood relies on my being there for her and putting in the effort for everything. I can't get a break. I can't get my own space. There's nothing I can do. I try to retreat but then she get attention seeking and I have to give her some or face a crying mother telling me about how she tries SO HARD to make my life better than what hers was at my age and that IM SO LUCKY that I don't have a mother and father that constantly beat away at my self esteem. I mean, sure, I don't have these things. It sure doesn't mean I'm living the good life. My bedroom is so cramped I can't do anything in there, and I have no space anywhere in the house. Haven forbid I make my own space. "Sarah put your stuff in your room" FOR FUCKS SAKE HOW THE FICK AM I MEANT TO LIVE HERE IM TREATED AT A CUDDLY BEAR THAT IS MEANT TO DO THE DISHES ON COMMAND. I don't have the energy to deal with her. I get home exhausted from school. I don't have the energy to do homework, yet she demands I give her loving attention to make her feel valued. I can't do this. I'm going to snap. A piece of string between me and my sanity and someone's put my sanity on a motorbike and is driving away at top speed with it.
I can't even escape her. I have a partner that I can sleep over at whose happy to have me but i can't sleep there more than once a week because my mum gets LONELY. OH IM SORRY ILL LET MYSELF BURN OUT AND FAIL VCE FOR YOU MUM. IT DOESN'T MATTER HOW STRESSED I AM AS LONG AS YOU GET TO FEEL GOOD ABOUT YOURSELF. I just want her to get a fucking boyfriend so I don't have to be the sole energy giver. She's a god damn vampire and between school and her I'm fucking anaemic. 
And then there's SCHOOL.FUCK.Next year I have English language 3/4, chemistry 3/4 and then two of Media, Biology, economics or uni chem.I hate bio and economics, but I hate every single other option available to me. Media is not likely to go ahead because there are so few interested in doing it and it while I want to do uni chem they probably won't let me because my scores aren't the best. I got into John Monash school of fucking science and because I'm not the brightest in the school I mightn't get in. Aaaaarrrggghhh. Fucking fucking fucking fucking fucking shit.  I'm going to hate next year so much.And now.And tomorrow.Oh yeah, my stress gets taken out on my poor partner because I have no outlets and I unconsciously become snappier. Yay for knowing in advance a potential reason for them breaking up with me. Fucking fuck.
 
   
   
Being emotionally supported means for me:

Feeling understood, validated, supported, encouraged, cared about, believed in,
loved, valued, accepted, respected, trusted, heard, forgiven, appreciated, acknowledged.

Radovan Šurlák, Today 10:07

R. said he felt all of those when he visited Priscilla in England

 
radovan bought souvenirs from london for his friends even tho he had run out of money on the first day -- we talked about this a little. how our culture teaches us to buy things to try to get friends, approval, acceptance etc. - i feel bad he spent that money. on people who aren't even really his friends, dont really care about him, his feelings.  
   
ha ha.. I got this mail to a while back... here is the page he talks about www.eqi.org/legal.htm

--

Your list of "how parent's hurt their kids legally" is absolutely absurd your writing clearly indicates childish mentality and probably hold resentment against your parents for either ACTUAL abuse/neglect or not being there. The lists on your site, go to far to the extreme, the internet while it may be a life line for those who are suffering from mental illnesses and suicidal ideations lets face it, it's not a necessity there are other ways to reach out for help. Parent's do what they do because they need to be done in most cases, and in a child's mind they do seem irrational but you know what, that's is why you're parents are there. They've gone through the bullshit life brings and they don't want their kids making the same mistakes.  If you do not show the says children hurt their parents then your site will be nothing more than libellus propaganda.  Calling the cops to retrieve a disobedient child who has run away, or won't come home is not hurting a child it's legally protecting themselves and protecting their family. Sending a child you can't handle to live with another family member or a boarding school is best for the child's future and don't you think it hurts the parents? You probably didn't figure that far ahead. Prom dates, shit my family still believes in arraigned marriages and you know what, WE WELCOME THE TRADITION. Family does what they need to do to protect the well being of each other whether or not people can see past their own desires to admit it.


Sincerely,

A child who was properly raised
A young adult who thanks the rules places on him
A functional member of society who accepts blame for his faults
A loving family member
D.J. Bowden

 
   
   
Today as I was speaking to Radovan, his older sister, at whose house he is staying for a few days, opened the door to his room and said, "  
   
[13:51:57] Steve : we talked about him coming back to england for easter break week
[13:52:03] Priscilla Hmm
[13:52:23] Steve : i thoughtif he did maybe he could stay at your parents' place this time tosave money
[13:52:39] Priscilla Yeah he said he really wants to get away from his place
[13:52:41] Steve : and im sureur parents would feed him dont u think?
[13:52:50] Steve : yeah today he was at his sisters..
[13:52:51] Priscilla Hmm maybe yeah
[13:53:02] Steve : let me showu what she said to him while we were talking
[13:53:15] Priscilla Ok
[13:53:20] Steve : [12:06] Radovan:

<<< Could you please tell your friend that its really nice outside, and that you need to stop talking and go outside.

[13:53:22] Steve : lol
[13:53:54] Steve : she said it in this really soft kind of voice. i had no idea what she was saying. but the tone didnt sound harsh. so that is very subtle....
[13:54:01] Steve : and confusing
[13:54:16] Steve : she knew he was chatting?
[13:54:34] Steve : hows that for indirect?
[13:54:42] Steve : could u please tell ur friend... haha
[13:54:45] Priscilla Oh
[13:55:00] Steve : not "i dont want you to keep chatting in english"
[13:55:04] Priscilla She wanted him to stop chatting?
[13:55:07] Steve : yeah!
[13:55:12] Priscilla Oh
[13:55:15] Priscilla I see
[13:55:19] Priscilla Wow
[13:55:21] Steve : that was the second time she came in i think
[13:55:22] Steve : yeah
[13:55:31] Priscilla You need to...
[13:55:36] Steve : yeah
[13:55:46] Priscilla More like I need I u to...
[13:55:47] Steve : i dont think he felt that need
[13:55:49] Steve : right
[13:55:54] Priscilla Yeah
[13:55:58] Steve : like "u girls need to get up off the floor"

(here is that article I wrote a long time ago http://www.eqi.org/uneed2.htm) - it still has the old style it is so old. now i see it is from 2003

see below for more about "you need to"


[13:56:04] Steve : class, u need to be quiet
[13:56:04] Priscilla Yeah
[13:56:12] Priscilla Lol

 
Being emotionally supported means for me:

Feeling understood, validated, supported, encouraged, cared about, believed in,
loved, valued, accepted, respected, trusted, heard, forgiven, appreciated, acknowledged.
[14:12:02] Steve : he said those were all the things he felt with u...
[14:12:41] Priscilla Aw
[14:12:48] Priscilla I dunno why
[14:12:52] Priscilla Lol
[14:12:57] Steve : ha ha
[14:13:01] Steve : i do
[14:13:11] Priscilla Aw
[14:13:26] Steve : huggy
[14:13:29] Priscilla I think ur better at emo support than I am
[14:13:32] Priscilla Huggy
[14:13:38] Steve : cuz im more emo
[14:13:56] Steve : impatient
[14:13:58] Steve : judgmental
[14:13:55] Steve : im not sure.im very demanding
[14:13:56] Priscilla When he meets u he's gonna say oh wow this is so much better than p
[14:14:00] Priscilla Aw
[14:14:06] Steve : haha
[14:14:40] Priscilla I feel impatient a lot too these days
 
   
Now I remember... his sister did come in earlier and she said something like "Why don't you go outside and stop spending so much time in your room on your computer?"

I laughed and showed Radovan this page

www.eqi.org/why1.htm

 
   
i dont want to write to people anymore, ie email them - unless they are reading my journal and applying what i teach. i have a need to teach. i am looking for students. almost desperate for them sometimes, but tonight i dont feel desperate. more like determined. clear. i know what i need. the ikwin principle i came up with or found or whatever many years ago.

but other people think they know what i need. yet they don't. only i know what i need. they can tell me what others need and what i "need" to do to be used by those other people. for example if i want to be an accountant and work for a big company they will tell me i need to study accounting in a university, pass exams, get a certificate etc. and others can tell me that i need to do all that. but they can't tell me what my emotional needs are or when i need to go to sleep or wake up or go to the potty. yet in schools, starting with pre-schools other people tell young people those very things. and not just in schools but in homes. parents say "you need to go to bed" "you need to wake up." no...not true. others need me to do those things to fit their schedules, their needs.

my body will tell me when i need to eat, sleep etc . so...conclusion... leave me the fuck alone and keep your fucking mouth shut.

from http://eqi.org/p1/j/jan8.htm

 
   
You may NOT publish or re-print this article without the written permission of Christine Miserandino and ButYouDontLookSick.com. Thank you.

---

Thank you? lol

below is the aritcle.. spoons... -- sent to me from casey

 

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.


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

*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.

-- Below u can see someone has copied this but changed it to paintbrushes!

i left the person this comment

i feel pretty offended that u have taken the spoons article and changed it like this without giving credit --

 
http://www.living-tones.com/blogs/news

Paint Brushes

My dad and I were eating dinner, talking when I was visiting him due to his health. Seemed, it was very late and we were talking about my artwork and the thought of me painting on his wheelchair. We spent a lot of time talking about my kids, his grand kids and how they have grown so fast. Then we spent time talking about our health and ages, T.V shows or trivial things.

We never got serious about anything in particular and spent most of our time laughing.


As I went to take some of my medicine and as well, aid my dad with his medicines, my dad watched me with an awkward kind of stare. Instead of continuing the conversation that we were both sharing in our laughter, he then asked me out of the blue what it felt like to have Lupus and he wanted me to explain it without worrying about his current health recovery. He told me to be brutally honest and not the silent person I tend to be. As like my dad I tend to fear people seeing me as weak, or even a liar or maybe even a complainer.


I was shocked not only because he asked the random question, but more importantly because I knew he had so much of his own pain in his current recovery of cancer that my physical issues were really not of importance to discuss at this time. But my dad wanted to know all there was to know about Lupus. As he states to me “You have been falsely diagnosed with so many various ailments through the past 6 years”, he was intrigued that finally there was an answer, yet he realized the answer was not one I wanted to acknowledge. I also knew he understood I wanted to keep it private as due to my wrongful past diagnosed health issues, it had created people that I loved deeply to question whether my health issue now was a real situation.


He saw me walk with much pain from rising up from his couch the prior morning from my arrival in visiting him for some days; I didn’t realize he was able to see me from his bedroom. He had seen me cry in pain from the front room window, when I was trying to hide the tears when outside near my car moving around my clothes bags. Yet here he put me on the ‘important’ list of ‘time to tell it as it is’.


I started to ramble on about pills, and aches and pains, but he kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my dad and friend; I thought he already knew the medical definition of Lupus. Then he looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand or in his case ill from his own battles, yet his mind of intelligence was very much aware this was serious, and I was still myself in somewhat denial of that seriousness. He asked what it felt like, not physically, but what it felt like to be me, to be sick from such a strange and unfamiliar title to the common folk.


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 him to understand. If I can’t explain this to my dad, how could I explain my world to anyone else, more importantly even myself? I had to at least try. And I sensed my dad wanted me to as a way for me to face my issues as he was being faced with dealing with his.


At that moment, I quickly grabbed every paintbrush I had brought into the house with the intentions of painting his wheel chair; I looked at him in the eyes and said “Here you go, you have Lupus”. He looked at me slightly confused, as anyone would when they are being handed a bunch of paintbrushes, the hard wooded brushes slipping out of my hands as I grouped them together and shoved them into his 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 my paintbrushes to convey this point. I wanted something for him to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. And I knew my dad was going to fully understand this analogy due to his own stubborn fight of cancer. If I was in control of taking away the paintbrushes, then he would know what it feels like to have someone or something else, in this case Lupus, being in control.


He grabbed the paintbrushes. I didn’t think he was quite sure what I was doing, but he is always up for a good moment, so I assumed he thought I was going to make joke of some kind like I usually do when talking about my own self topics. Little did he know just how serious I would become? After all he firmly requested from me to ‘explain’.
I asked him to count the paintbrushes. He asked why, and I explained that when you are a healthy artist~ artist as in me, as that is how my dad views me. Anyway, you expect to have a never-ending supply of “paint-brushes”. But when you have to now plan your day, you need to know exactly how many “paint-brushes” 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. He counted out 12 paint-brushes. He laughed and said he wanted more. I said no, and I knew right away that this little game would work, when he looked disappointed, and we hadn’t even started yet. I’ve wanted more “paint-brushes” for years and haven’t found a way yet to get more, why should he? I also told him to always be conscious of how many he had, and not to drop them because he can never forget he has Lupus.


I asked him to list off the tasks of his day, including the most simple. As, he rattled off daily chores, or just fun things to do; I explained how each one would cost him a paint-brush. When he jumped right into getting ready for his physical therapy as his first task of the morning, I cut him off and took away a paint-brush. I practically jumped down his throat. I said” No! You don’t just go to physical therapy. You have to crack open your eyes, and then realize you have to get out of your bed. You didn’t sleep well the night before. You have to crawl out of bed, and then find something to wear. You have to make yourself 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 paint-brushes for today and tomorrow too.” I quickly took away a paint-brush and he realized he hasn’t even gotten dressed yet. Showering cost him a paint-brush, just for washing his hair and shaving. Reaching high and low that early in the morning could actually cost more than one paint-brush, but I figured I would give him a break; I didn’t want to scare him right away. Getting dressed was worth another paint-brush. I stopped him and broke down every task to show him 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 he was starting to understand when he theoretically didn’t even get out of the bed, and he was left with 6 paintbrushes. I then explained to my dad that he needed to choose the rest of his day wisely, since when your “paint-brushes” are gone, they are gone. Sometimes you can borrow against tomorrow’s “paint-brushes”, but just think how hard tomorrow will be with less “paint-brushes”. 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 “paint-brushes”, because you never know when you truly will need them. I didn’t want to depress my dad, but I needed to be realistic for him as he requested and actually for myself, and unfortunately being prepared for the worst is part of a real day for me.


When we got to the end of his pretend day in my shoes, which he wanted to understand, he said he was hungry. I summarized that he had to eat dinner but he only had one paint-brush left. If he cooked, he wouldn’t have enough energy to clean the pots. If he went out for dinner, he might be too tired to drive home safely. Then I also explained that I didn’t even bother to add into this game, that he was so nauseous, that cooking was probably out of the question anyway. So he 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 paint-brush, so you can do something fun, or clean your home, or do chores, but you can’t do it all.
I rarely see my dad emotional, so when I saw him upset I knew maybe I was getting through to him. I didn’t want my dad to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. He had tears in his eyes and asked quietly “Kathleen, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more paint-brushes than 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 my dad a paint brush I had been holding in reserve. I said simply, “I have learned to live life with an extra paint brush in my pocket, in reserve. You need to always be prepared.”


It’s 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 him to feel that frustration. I wanted him 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 “paint-brushes”.


After we were emotional and talked about this for a little while longer, I sensed my dad was sad. Maybe he finally understood. Maybe he realized that he never could truly and honestly say he understands. But at least now he might not complain so much when I can’t get to him as my heart desires to help him in his needs, or help him with all his daily obstacles, or when I never seem to make it to the phone to call at the end of the day because I don’t even have enough strength to talk on the phone.


I gave my dad a hug when we finished eating our dinner. I had the one paint-brush 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 paint-brushes people waste every day? I don’t have room for wasted time, or wasted “paint-brushes” and I chose to spend this time with you.”


Ever since this night, I have had to keep my mind in focus about the fact I do finally have an answer for who and what I am and what I have, LUPUS. I still wonder if my dad, he really had no understanding or if he was just helping me to keep an understanding of me, as we both share the ‘stubborn’ streak of denial of pain. And when I showed up at his front door to get brutally honest about his needs and for him to not be so combative over his recovery, he turned it on me to do the same. Now like I required from him he pointed out the same requirement of me, dealing with our pains and fears, of past pains, or never ending pain.


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 in 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 now with my dad and I that we should feel special when we spend time together even if only a phone call, because we have shared one of my “paint brushes”.