Tuesday, April 3, 2007

God and the Spider

God and the Spider

During World War II, a US marine was separated from his unit on a Pacific island. The fighting had been intense, and in the smoke and the crossfire he had lost touch with his comrades.

Alone in the jungle, he could hear enemy soldiers coming in his direction. Scrambling for cover, he found his way up a high ridge to several small caves in the rock. Quickly he crawled inside one of the caves. Although safe for the moment, he realized that once the enemy soldiers looking for him swept up the ridge, they would quickly search all the caves and he would be killed.

As he waited, he prayed, "Lord, if it be your will, please protect me. Whatever your will though, I love you and trust you. Amen."

After praying, he lay quietly listening to the enemy begin to draw close. He thought, "Well, I guess the Lord isn't going to help me out of this one." Then he saw a spider begin to build a web over the front of his cave.

As he watched, listening to the enemy searching for him all the while, the spider layered strand after strand of web across the opening of the cave.

"Hah, he thought. "What I need is a brick wall and what the Lord has sent me is a spider web. God does have a sense of humor."

As the enemy drew closer he watched from the darkness of his hideout and could see them searching one cave after another. As they came to his, he got ready to make his last stand. To his amazement, however, after glancing in the direction of his cave, they moved on. Suddenly, he realized that with the spider web over the entrance, his cave looked as if no one had entered for quite a while.

"Lord, forgive me," prayed the young man. "I had forgotten that in you a spider's web is stronger than a brick wall."

We all face times of great trouble. When we do, it is so easy to forget what God can work in our lives, sometimes in the most surprising ways. And remember with God, a mere spider's web becomes a brick wall of protection.

Friday, February 16, 2007

The Spoon Theory

The Spoon Theory

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 a 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".
© 2003 by Christine Miserandino Butyoudontlooksick.com

Wednesday, January 17, 2007

Keep Your Folk

Keep Your Fork

I received this from a special friend and instantly remembered all the potlucks over the years, escpecially at church during my moms YLI years. It was always a place where the ladies primped and prepared us for life and I felt safe. The recognized your abilities, appreciated you efforts and praised your talents. I will always remember to, Keep My Folk!



There was a young woman who had been diagnosed with a terminal illness and

had been given three months to live. So as she was getting her things "in

order," she contacted her pastor and had him come to her house to discuss

certain aspects of her final wishes. She told him which songs she wanted

sung at the service, what scriptures she would like read, and what outfit

she wanted to be buried in.



Once everything was discussed and the pastor was preparing to leave, the

young woman suddenly remembered something very important to her. "There's

one more thing," she said excitedly.



"What's that?" came the pastor's reply.



"This is very important," the young woman continued, "I want to be buried

with a fork in my right hand."



The pastor stood looking at the young woman, not knowing quite what to say.



"That surprises you, doesn't it?" the young woman asked.



"Well, to be honest, I'm puzzled by the request," said the pastor.



The young woman explained, "My grandmother once told me this story, and from there on out, I have always done so. I have also always tried to pass along

its message to those I love and those who are in need of encouragement. In

all my years of attending church socials and potluck dinners, I always

remember that when the dishes of the main course were being cleared, someone

would inevitably lean over and say, 'Keep your fork!' It was my favorite

part because I knew that something better was coming, like velvety chocolate

cake or deep-dish apple pie. Something wonderful and with substance! So, I

just want people to see me there in that casket with a fork in my hand and I

want them to wonder 'What's with the fork?' Then I want you to tell them,

Keep your fork. The best is yet to come'."



The pastor's eyes welled up with tears of joy as he hugged the young woman

good-bye. He knew this would likely be one of the last times he would see

her before her death. But he also knew that the young woman had a better

grasp of heaven than he did. She had a better grasp of what heaven would be

like than many people twice her age, with twice as much experience and

knowledge. She just KNEW that something better was coming.



At the funeral people were walking by the young woman's casket and they saw

the pretty dress she was wearing and the fork placed in her right hand.

Over and over, the pastor heard the question "What's with the fork?" And

over and over he smiled. During his message, the pastor told the people of

the conversation he had with the young woman shortly before she died. He

also told them about the fork and about what it symbolized to her.



The pastor told the people how he could not stop thinking about the fork and

told them that they probably would not be able to stop thinking about it

either. He was right.



So the next time you reach down for your fork, let it remind you ever so

gently ... That the best is yet to come.



Friends are a very rare jewel, indeed. They make you smile and encourage

you to succeed. They lend an ear, they share a word of praise, and they

always want to open their hearts to us.



Show your friends how much you care. Remember to always be there for them,

even when you need them more. For you never know when it may be their time

to "Keep Your Fork."



Cherish the time you have and the memories you share ... Being friends with

someone is not an opportunity but a very sweet responsibility.



And .. Please Keep Your Fork!

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