Getting back into regular blogging in this age of facebook is proving to be more difficult than I thought it would be. Instant gratification has spoiled me.
The Girl and I went to Isabella’s IEP (Individual Education Plan) meeting today. We are so pleased with Bell’s progress. Her teacher, therapists and team leader are all so professional AND loving. Bells did well in her previous school but this one is so much more detailed in their observations and plans. We are so blessed!
On Saturday, The Boy turns 21. Twenty-one! Where has the time gone. He is turning out to be a nice man. I wish him happiness and success. My baby.
My baby bro is coming up from Texas this weekend and I will get to hug him on Sunday! How can a year have gone by already!
I started a computer program with Isabella yesterday. It is called Starfall (www.starfall.com). Hopefully, it will begin her computer literacy and she will learn a thing or two! Her attention span seems to be increasing and I am thankful for that.
Sorry for the scattered way I am writing. Hopefully, once I get “back into the groove” MY attention span will increase!
Blessings, g
Thursday, October 14, 2010
Tuesday, September 28, 2010
Women, Take Heed
In these waning days of September, the month dedicated to ovarian cancer awareness, I would be remiss to not mention the signs and symptoms of this silent killer:
Symptoms of Ovarian Cancer
Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.
The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.
Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
Bloating
Pelvic or abdominal pain
Difficulty eating or feeling full quickly
Urinary symptoms (urgency or frequency)
Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.
Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.
Please visit OCNA for more information.
Taken from www.tealtoes.org
Symptoms of Ovarian Cancer
Even in its early stages ovarian cancer has symptoms. Research indicates that 95 percent of women with ovarian cancer had symptoms and 90 percent of women experienced symptoms with early-stage ovarian cancer. Symptoms vary from woman to woman and many times depend on the location of the tumor and its impact on the surrounding organs. Many of the symptoms mimic other conditions such as irritable bowel syndrome.
The Gynecologic Cancer Foundation, the Society of Gynecologic Oncologists and the American Cancer Society, with significant support from the Alliance formed a consensus statement on ovarian cancer. The Ovarian Cancer National Alliance has endorsed the consensus statement, which was announced in June 2007. The statement follows.
Historically ovarian cancer was called the “silent killer” because symptoms were not thought to develop until the chance of cure was poor. However, recent studies have shown this term is untrue and that the following symptoms are much more likely to occur in women with ovarian cancer than women in the general population. These symptoms include:
Bloating
Pelvic or abdominal pain
Difficulty eating or feeling full quickly
Urinary symptoms (urgency or frequency)
Women with ovarian cancer report that symptoms are persistent and represent a change from normal for their bodies. The frequency and/or number of such symptoms are key factors in the diagnosis of ovarian cancer. Several studies show that even early stage ovarian cancer can produce these symptoms.
Women who have these symptoms almost daily for more than a few weeks should see their doctor, preferably a gynecologist. Prompt medical evaluation may lead to detection at the earliest possible stage of the disease. Early stage diagnosis is associated with an improved prognosis.
Please visit OCNA for more information.
Taken from www.tealtoes.org
Saturday, September 11, 2010
Welcome to Holland
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Friday, September 10, 2010
I Won't Forget
It was a beautiful day much like today. Temperature was around 70 and school had just started again after a long summer break. I had just finished an exercise video and was about to start the treadmill when I turned on the tv. Instead of the regular programming the station was showing a view of the World Trade Center which was expelling billowing, dark gray smoke.
I called Himself at work to see what the buzz was there since he was in the travel industry. They thought it was a small plane gone astray just as one did at the Empire State Building many years ago. While we were talking, a second plane went into the other Tower and I screamed, "OhmyGod! OhmyGod! OhmyGod! It was then we knew we were being attacked.
After hanging up with Himself, I tried to go on the treadmill. Was it shock? A need for normalcy or routine in my world which had just been turned upside down? I can't tell you but I remember that I couldn't stay on that machine but, instead, sat riveted to the television.
I called my sister and gave her office the lowdown. I called my parents, brother, friends and told those who hadn't heard yet to put on their tv's. What channel, they asked. Any channel.
Thinking about bioterrorism, I went to the nearest supermarket and bought twenty-two gallons of water and two gallons of bleach for purifying water. I then filled up my gas tank and told the Arab attendant to be careful. Next was a stop at my dd's home. She was a mess but I knew that her friends were on their way so I went to The Boy's school.
The Boy was in the lunch room and I explained to him and his friends what was happening as calmly as possible. They didn't seem spooked so I asked my boy if he wanted to stay in school and be brave for his friends. He said yes. As I was leaving, I stopped in at the nurse's office. I told her I didn't know what was the right thing to do. She told me that, yes, I did know. I immediately went back to the lunch room and took my son home.
Himself was not permitted to leave work until three that afternoon. We had to turn off the television despite the fact that I didn't want to. It just wasn't good for our boy to watch this over and over again.
Living close to a very busy airport we are quite used to hearing planes going overhead at any time of the day. One of the most eerie parts of that day was the silence of commuter jet traffic and the roar of military jets and the pulsing of helicopter rotors which occasionally swept by.
We had no idea what was to come next. All we knew was that we were together, God was and is alive and well and that His eye was/is on us.
Truth be told, I don't remember much else about that day. I was helping to care for a friend who was dying of cancer and had to compartmentalize everything to be able to cope. In the following months, I became anorexic (not for the first time), my son graduated from sixth grade, my dear friend died and I went into an eating disorders facility for three weeks to keep from dying myself. However, on September 11, 2002, the trauma hit me big time. I kept expecting the same thing to happen. It didn't, thankfully, but the PTSD Alien Hunter speaks of was and, I believe, is still rampant in these here parts.
On this fifth anniversay, I sit here and wonder when the next attack will occur and if it will happen in the same places. Could my son cope with watching a site in NYC smoking and burning for two months again? I don't care what your political leanings are but I believe this administration has strengthened our security greatly. Our borders are still porous and that is a problem we need to deal with. Whether or not we belong in Iraq will not be discussed on this site and I will immediately delete any posts referring to it.
One of my greatest fears is that we, as a nation, have become complacent. Yes, we have to get on with our lives. However, there are people who complain about taking off their shoes before hopping on a plane and many who no longer fly their flags like we did five years ago. The taxis in NYC are honking their horns loudly again unlike the control they showed for what I believe was months after 9/11.
One good change has remained, though. We say, "I love you," much more freely than we did five years ago. We are much more aware of how fragile and finite our lives are. This is a very good thing.
I called Himself at work to see what the buzz was there since he was in the travel industry. They thought it was a small plane gone astray just as one did at the Empire State Building many years ago. While we were talking, a second plane went into the other Tower and I screamed, "OhmyGod! OhmyGod! OhmyGod! It was then we knew we were being attacked.
After hanging up with Himself, I tried to go on the treadmill. Was it shock? A need for normalcy or routine in my world which had just been turned upside down? I can't tell you but I remember that I couldn't stay on that machine but, instead, sat riveted to the television.
I called my sister and gave her office the lowdown. I called my parents, brother, friends and told those who hadn't heard yet to put on their tv's. What channel, they asked. Any channel.
Thinking about bioterrorism, I went to the nearest supermarket and bought twenty-two gallons of water and two gallons of bleach for purifying water. I then filled up my gas tank and told the Arab attendant to be careful. Next was a stop at my dd's home. She was a mess but I knew that her friends were on their way so I went to The Boy's school.
The Boy was in the lunch room and I explained to him and his friends what was happening as calmly as possible. They didn't seem spooked so I asked my boy if he wanted to stay in school and be brave for his friends. He said yes. As I was leaving, I stopped in at the nurse's office. I told her I didn't know what was the right thing to do. She told me that, yes, I did know. I immediately went back to the lunch room and took my son home.
Himself was not permitted to leave work until three that afternoon. We had to turn off the television despite the fact that I didn't want to. It just wasn't good for our boy to watch this over and over again.
Living close to a very busy airport we are quite used to hearing planes going overhead at any time of the day. One of the most eerie parts of that day was the silence of commuter jet traffic and the roar of military jets and the pulsing of helicopter rotors which occasionally swept by.
We had no idea what was to come next. All we knew was that we were together, God was and is alive and well and that His eye was/is on us.
Truth be told, I don't remember much else about that day. I was helping to care for a friend who was dying of cancer and had to compartmentalize everything to be able to cope. In the following months, I became anorexic (not for the first time), my son graduated from sixth grade, my dear friend died and I went into an eating disorders facility for three weeks to keep from dying myself. However, on September 11, 2002, the trauma hit me big time. I kept expecting the same thing to happen. It didn't, thankfully, but the PTSD Alien Hunter speaks of was and, I believe, is still rampant in these here parts.
On this fifth anniversay, I sit here and wonder when the next attack will occur and if it will happen in the same places. Could my son cope with watching a site in NYC smoking and burning for two months again? I don't care what your political leanings are but I believe this administration has strengthened our security greatly. Our borders are still porous and that is a problem we need to deal with. Whether or not we belong in Iraq will not be discussed on this site and I will immediately delete any posts referring to it.
One of my greatest fears is that we, as a nation, have become complacent. Yes, we have to get on with our lives. However, there are people who complain about taking off their shoes before hopping on a plane and many who no longer fly their flags like we did five years ago. The taxis in NYC are honking their horns loudly again unlike the control they showed for what I believe was months after 9/11.
One good change has remained, though. We say, "I love you," much more freely than we did five years ago. We are much more aware of how fragile and finite our lives are. This is a very good thing.
Monday, August 23, 2010
What About the Innocents?
Anyone who knows me knows that I would not be a fan of Ms. Huffington. However, she did run an article that needs to be first page news in every publication around the country and maybe around the world.
Are you willing to take a few minutes to comment on the Huffington Post web site in order to bring to light the abuse happening to our children who have no voice? Please visit and speak up for our innocents: http://www.huffingtonpost.com/kim-stagliano/post_701_b_685954.html
Thank y0u, gail
Are you willing to take a few minutes to comment on the Huffington Post web site in order to bring to light the abuse happening to our children who have no voice? Please visit and speak up for our innocents: http://www.huffingtonpost.com/kim-stagliano/post_701_b_685954.html
Thank y0u, gail
Monday, August 9, 2010
Nearly Spoonless
Conditions this summer have left me nearly spoonless (please see last entry for explanation) for blogging. It has been a hot, humid season and I have had to care for Isabella much more than planned.
As I sit here typing, my bed is calling out to me to take a nap. Himself is out with The Boy and Bells is watching Cinderella for maybe the fifteenth time in a month so I have no option but to stay awake.
Life has been challenging but we are muddling through. God's mercy is evident in that we still have a roof over our heads, food in our bellies and clothing on our backs.
Thinking about the souls I have met here brings a warm feeling to my heart. Do you know that when you come to mind I try to remember to pray for you?
For dear J whose health has been a trial and is awaiting treatment.
For wonderful R who is going to school and taking care of home and hearth whilst battling her own health issues.
For T across the pond who never fails to bring a smile to my face.
For G who lives with some of the same challenges on the "spectrum" that we live with.
B, the survivor whose mom is battling a devastating illness.
Irrepressible 'r as he continues to labor in the Lord's army.
C, a proud professional working to bring justice to a system that is failing. My beloved adopted child W, who has a spirit of adventure and love.
My adopted son, R, working too hard but trying to balance his life with a little fun.
D who keeps me laughing as she lives her life loving her hubby, daughters, grandkids and many pets, hopefully in that order. L who is growing in her faith as she takes the bull by the horns and gets her house, literal and figurative, in order!
CL working away and keeping her mama safe and happy as they both serve Him faithfully.
Optimistic A who kept me riveted with her stories leading up to her wedding and pregnancy.
L, my dear sister separated from birth, sharing her beautiful photography and life on a ranch.
D, another sister who showed me how one little tree can tell a story.
J, persevering no matter what life throws her way and convincing me that I just might have some beauty in me!
R, working to fight a government he finds tyranical.
A, a man who fights his anger and protects his family.
L, a man of God who preaches truth unashamedly.
A, waiting to go home after faithfully following her hubby.
S, another mom gone back to school as she inspires me to think about running again.
C, wonder woman, building her body as she nurtures her boys!
S, the chronicler, traveling and dancing as she keeps her girls and honey supplied with gourmet meals.
L, the hipster, whose are hangs in my home.
A, a sweet mom having fun with her girls, taking pictures to chronicle their antics.
M, another sister separated from birth living far away from me where she teaches and grows her family taking them on wonderful adventures!
J, who is hardly around but can get me to chuckle no matter what.
D, a fellow gram who loves her challenged grandchild so much it hurt and who supports her daughter no matter what.
S, across the pond, too, another gram who has the heart of a poet.
I know there are more and I hope you will forgive me if I have left you out. The Holy Spirit knows and sends prayers for all for me.
Much love, g
How could I forget my partner in crime, J! We've never met but we have so much in common including fms.
As I sit here typing, my bed is calling out to me to take a nap. Himself is out with The Boy and Bells is watching Cinderella for maybe the fifteenth time in a month so I have no option but to stay awake.
Life has been challenging but we are muddling through. God's mercy is evident in that we still have a roof over our heads, food in our bellies and clothing on our backs.
Thinking about the souls I have met here brings a warm feeling to my heart. Do you know that when you come to mind I try to remember to pray for you?
For dear J whose health has been a trial and is awaiting treatment.
For wonderful R who is going to school and taking care of home and hearth whilst battling her own health issues.
For T across the pond who never fails to bring a smile to my face.
For G who lives with some of the same challenges on the "spectrum" that we live with.
B, the survivor whose mom is battling a devastating illness.
Irrepressible 'r as he continues to labor in the Lord's army.
C, a proud professional working to bring justice to a system that is failing. My beloved adopted child W, who has a spirit of adventure and love.
My adopted son, R, working too hard but trying to balance his life with a little fun.
D who keeps me laughing as she lives her life loving her hubby, daughters, grandkids and many pets, hopefully in that order. L who is growing in her faith as she takes the bull by the horns and gets her house, literal and figurative, in order!
CL working away and keeping her mama safe and happy as they both serve Him faithfully.
Optimistic A who kept me riveted with her stories leading up to her wedding and pregnancy.
L, my dear sister separated from birth, sharing her beautiful photography and life on a ranch.
D, another sister who showed me how one little tree can tell a story.
J, persevering no matter what life throws her way and convincing me that I just might have some beauty in me!
R, working to fight a government he finds tyranical.
A, a man who fights his anger and protects his family.
L, a man of God who preaches truth unashamedly.
A, waiting to go home after faithfully following her hubby.
S, another mom gone back to school as she inspires me to think about running again.
C, wonder woman, building her body as she nurtures her boys!
S, the chronicler, traveling and dancing as she keeps her girls and honey supplied with gourmet meals.
L, the hipster, whose are hangs in my home.
A, a sweet mom having fun with her girls, taking pictures to chronicle their antics.
M, another sister separated from birth living far away from me where she teaches and grows her family taking them on wonderful adventures!
J, who is hardly around but can get me to chuckle no matter what.
D, a fellow gram who loves her challenged grandchild so much it hurt and who supports her daughter no matter what.
S, across the pond, too, another gram who has the heart of a poet.
I know there are more and I hope you will forgive me if I have left you out. The Holy Spirit knows and sends prayers for all for me.
Much love, g
How could I forget my partner in crime, J! We've never met but we have so much in common including fms.
Thursday, July 8, 2010
The Spoon Theory
This was sent to me via email and really hits the nail on the head. Just because a person doesn't show overt symptoms dosn't mean they aren't hurting. Let me know what you think.
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
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
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