Tuesday, January 27, 2015

The Spoonie Story


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 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.F3aQMCiE.dpuf

Monday, December 8, 2014

Stillness

Sometimes words are spoken the loudest in the silence.

Sometimes comfort is found only through tears.


One thing is true,  God brings the people into your life who are supposed to be there and his presence is known by the ones who surround you in your time of need. 

I ache for so many tonight God. Bring them the comfort and peace that your mercy and grace provide.

Tuesday, December 2, 2014

The Potters House


Any piece of clay can be transformed when you land in the Potter's hands. 

Mold me God, to what you want me to be. 
Use me for your work and guide me on the path you chose for me.

Sunday, September 28, 2014

Your Calling


Your career is what you're paid for, your calling is what you're made for" - Steve Harvey


Lord, help me find my calling. 

Saturday, September 27, 2014

Finding My Truth - Update

As a continuation of my previous post, I have given myself a little over two weeks to discover my truth and my truth is I've been broken and angry with God for the past four years now. I struggle every day with grief as I still have not "gotten over" losing my parents. I don't think its something you ever get "over" I think its just something you get numb to over time.  I have back problems and joint problems and am constantly in pain. I have struggled with weight; I had the gastric bypass and even though I don't very much, I still gain weight.  I have struggled with infertility for years and I know a child is something my husband really wants.  My best friend and I have suffered so much loss over the past four years and my sister has several life-long illnesses that there is no cure for.

Then I found this video:

My truth is I cannot do any of this without him and I need to start giving him more praise, more thanks, and more of myself and my time.  I usually do that by posting here, about my struggles and how he helps me through them.  I want to make more of a conscious effort to do more of that. Thank you God for the blessings in my life. Thank you for the realization that some of the blessings and changes in my life are painful but are molding me for who you made me to be.

Wednesday, September 10, 2014

Finding Your Truth

Listening to a sermon by the late Dr. Bob Sanders. He was teaching on 1 John, 2:4 "Whoever says “I know him” but does not keep his commandments is a liar, and the truth is not in him" 




He continues on and discusses your spiritual gifts. What would happen if the holy spirit made you a report card of how well you used your spiritual gifts and then gave it to your father (God).  I've never thought of using your gifts that way. What would your report card say? What's your truth? This goes along with Steve Harvey's latest book "Act like a success" - talking about figuring out what your spiritual gifts are and how to use them in such a way of being blessed and being in God's favor. I will be doing some self reflection and will post about my gifts, my report card, and my truth. 




Wednesday, August 13, 2014

Wings


Today's a day that if I had wings, I would wrap them around myself and sit somewhere quietly.  I would grieve in silence and not want to be disturbed. I ache for the family of my pastor. For his wife, who I hold very dear... for his children, who will be without a father.. for his grandchildren who lost the best male role model their life will ever have... for his flock that is now without a shepherd... I am, however, in awe of the legacy he leaves behind.  The legacy that he left wasn't him - it was Jesus. His job while on earth was to make sure no one was left behind - not the wounded, the broken or desolate. He believed in that so strongly that he named his ministry Hephzibah's House Ministries which is from the verse "You shall no longer be termed desolate...but you shall be called Hephzibah for the Lord delights in you. --Isaiah 62:4"

He was so gifted, connected, and so in-tuned with God and his relationship with others. He understood people and their struggle.  He was a counselor, a mentor, and a most of all a friend; he love people enough to tell them the truth - even if it hurt.  He will forever be a person who taught me a lot in the little time I knew him. The Lord's work will continue because he planted a seed in others to do so.  Thank you Bob - for your contribution to the world, to my community, to my church, and to my life.  My life was blessed because you and Janet were in it. 



2 Corinthians 1:3-5English Standard Version (ESV)

God of All Comfort

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ's sufferings, so through Christ we share abundantly in comfort too.[a]

Friday, August 1, 2014

Ordinary Days

Dear Mom,

Its days like today that I miss you the most. Today's Friday and right now the house is quiet. Its days like today that you and I would sit and talk about nothing. I loved the way you could give me advice without directly meddling and trying to sway my life decisions one way or another; which is funny because Johnny always tell me that I don't know how to mind my business and I am convinced that I get that from you; I'm sure dad would agree.

All day, everyone has asked me how I am and my automatic standard reply is "Fine" but honestly, I'm not. I miss you and I've found me blaming myself for you leaving. But I keep thinking, if I had only objected you getting contrast for the CT for PE/DVT protocol. Knowing you had chronic kidney issues that your creatinine was too high for the contrast. I keep feeling like that damn Omnipaque was the catalyst to losing you and I could have stopped it somehow.  Had I not let you get that contrast maybe this whole tailspin would have never started and you would still be here with us - with me. I know that if you were here, you would take me into your arms and wipe my tears away and tell me it really wasn't my fault and that it was God's plan - why I'll never know. It has crossed my mind that maybe it was for Missy. In all of her four years of wisdom and innocence, you dying left Elana (who she associates as a child) an orphan and Missy knew Elana needed a new mommy and daddy and that you left her with Johnny and me. It helped her to understand that your parents aren't necessarily who birth you but the people who put in the love and time to raise you and that made her transition of knowing she was adopted much easier for her. I know you would've given your life for her as if she was your own grandchild and in a way she was. I keep playing all of these scenarios in my head and I just feel like I cannot stop spinning.  I miss you and I always will. They say time will heal all wounds, but its as if today isn't included in "time" somehow.

Today's just an ordinary day; its nothing special. I'm sure it's someone's birthday, but no one I know. Today doesn't mark the change of a season or a holiday but its just another day - another day that I have thought about you. So today, I can add a few hundred tears to add to the sea of tears that I have already cried.

Wednesday, May 7, 2014

STRUGGLING

 

  Today is May 8, 2014 - its officially been 1,468 days since Daddy went home and 905 days since Momma joined him. I've been seriously struggling emotionally since they left.  I read back on an old blog posting tonight that said it had been 14 months since Mom died and I could actually start talking about it ---- well now, today -- I can't.  I cannot talk or think about either parent without going into a full-on panic/anxiety attack. When they first passed, I could talk about it and listen to and tell stories about them -- but now I am surrounded by constant reminders of their passing.  Mom's anniversary of her death is a week before thanksgiving and their birthdays are the week after new years and dad's anniversary of his passing is the week before mother's day.  My birthday is the week of father's day. Its like everything is connected  I think part of my problem is I am attempting to disconnect instead of work through the grief - the biggest reason why though is I am not sure how or where to start. I know one of my struggles is automatically connecting everything with their death - i need to make a purposeful effort to connect these life events with their lives and not to forget the living.  

Tuesday, February 26, 2013

Becoming anew

Day 14

I celebrate the life of a dear friend of our family's who has been gone for exactly one year today. I hurt for his family, ache for his children, and I still shed tears for him.  He's been on my mind for a few weeks now but I cannot believe he has already been gone for a year.





I remember when mom was planning her own funeral, she requested him preach her funeral. He called me the day mom passed to tell me how sorry he was that he could not fulfill her last wishes, as he was sick himself and was being put into the hospital. I didn't know then that he was dying too, but even in his last days he tried to help others. I'll never forget the kindness he and his family always showed ours and I'm sure he is rejoicing with my parents today for they are all free and all have new bodies. 

I miss you Mike, we all do. But today, I think of one of your famous quotes and smile: He who is flexible is never bent out of shape.