Wednesday, August 15, 2012

The Spoon Theory

After sharing my story today, a dear friend sent this article to me.  It is from a great website entitled "But You Don't Look Sick".  I had never heard of it before and am so glad she introduced me.

As their website says, "The mission of is to help everyone with a chronic illness or invisible disability, in order for them to live their lives to the fullest and not feel isolated and alone."

If you are living with a chronic illness or invisible disability, grab a cup of coffee and sit awhile.  Read through this site.  It will make you laugh and cry, give tips on managing life and mostly make you feel truly understood.
I especially love "The Spoon Theory".  Whether you are the "sick" person or you know someone who is, you owe it to yourself to read this and pass it on.

It is very difficult to explain an unseen illness.  I often feel as if people think I am just lazy and faking it, or exaggerating it, at best.  Christine paints such a beautiful picture of what it is really like.  I could not explain it this well no matter how hard I tried.  So I will stop trying and just let you read her story.

written by Christine Miserandino

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”.

Doctors, doctors everywhere...

Spring was crazy this year.  Due to various uncontrollable circumstances, we had to take a few extra breaks from school in the fall and winter.  So, spring was spent plowing through our school-work so that we could finish by the end of May.  After what seemed like life-times of painfully long school-days, we finally made it.

Ahhh, summer!  How happy we were to see you!  Endless days of no obligations, no to-do lists, no stress. 

Well, that was the plan, anyway.  But then June came raging in.

My father has been battling cancer off and on for the past three years.  Cancer was found.  A few rounds of chemo and radiation later, the cancer was gone.  A few months later, more cancer was found.  This cycle repeated itself a few times.  Fortunately, the treatments were always successful at getting the cancer down to undetectable levels.  That is until this year.

Nothing they tried seemed to do any good.  At the beginning of the summer, his doctor told us there was nothing more he could do.

So we found a new doctor.

The new doctor was a blessing from Above!  He immediately started my dad on a type of chemo that had been successful in the past.  We had to attack this cancer quickly because within one month of no treatment what-so-ever, my dad's tumor had tripled in size.  Had he continued to go without treatment, we were told it would be a matter of weeks.

So we waited and prayed.  We worried and cried and prayed some more.  

 We had to wait six weeks for his next CAT-scan to see if the chemo was doing anything at all.  That was a difficult six weeks.  If the chemo wasn't working, he might not even live long enough to get the scan.

Thank God, he made it.  And the scan showed that not only was the tumor not growing anymore, it was actually shrinking!  A bright light in the midst of foggy darkness.

He has continued with the same treatment for the past couple months.  Unfortunately, it seems more and more difficult for his body to rebound after each treatment.  We are now back to waiting for the next CAT-scan, which will be this coming Monday.  Again the questions and doubts and hopes and fears come flooding in.

Is the treatment still working?  Has the cancer gotten more aggressive?  Or has the chemo significantly reduced it?  Will his body tolerate another couple months of this treatment?  Will the new, highly anticipated, promising cancer drug be released for use soon?

Not knowing what the future brings is difficult.  
Not knowing what the day will bring is excruciating.  

So we wait and pray.  We worry and cry and pray some more.

June also brought with it some more unexpected events.  I have had Lupus for over a decade and have managed to control it naturally for the past five years or so, with great success.  Apparently this summer, my time was up.  After a week of unbearable, unshakable pain, I finally made a doctor's appointment.  He ran some tests, and immediately sent me to a rheumatologist (arthritis doctor), who ran some more tests, and immediately sent me to a nephrologist (kidney doctor).  It seems that not only has my Lupus flared up significantly, but it has progressed into my kidneys.  After more tests and a kidney biopsy, the diagnosis is officially Level 3 Lupus Nephritis, meaning my Lupus is beginning to cause damage to my kidneys.  Luckily, the damage is minimal at this point.  If left untreated, however, it would eventually cause kidney failure.  

So we are attacking it aggressively to keep it from getting to that point.  I now have a bag full of medications I must take all through-out each day.  (Thankfully, Walgreen's has a great app for my phone that keeps track of all my meds and reminds me when to take them!  I would be lost with that!)  The goal is to have the Lupus Nephritis "in remission" after six months of taking a dozen or so pills a day.  If that is successful, I will be down to only two maintenance medications for the rest of my life.

I don't like medications.  I have worked diligently over the past five years, completely changing my lifestyle, in an attempt to avoid the meds.  Don't get me wrong...I am very grateful for the technology and the amazing "healing" power of medicines.  I very much understand and appreciate the fact that were I living in another time or another place, I would not have a good prognosis.  That makes dealing with the horrendous side effects a little easier to do.  But the reality is, my body is not working like it used to.  I cannot do the things everyone around me can.  There are times, sometimes days on end now, that I can do little more than make it to my recliner.  And now we get to add on to that the unknown factor of how my body will tolerate all these new chemicals I am pumping into it.  

So I wait and pray.  I worry and cry and pray some more.

After giving me the results of my biopsy and going over the plan of attack, my nephrologist told me that I was handling this exceptionally well.  I don't know that I agree with that.  All I know for sure is that none of this is a surprise to my Father in Heaven, and He will not let me go through it alone.

In the midst of the craziness that was June, God dropped a little life-line to me.  He knew what was coming, and He provided me with a perspective-changing blessing before it all began.  I have a Kindle Fire and I tend to check the list of free Kindle books every few weeks or so.  In June, there happened to be a book entitled "A Place of Healing: Wrestling with the Mysteries of Suffering, Pain, and God's Sovereignty" by Joni Eareckson Tada.

Amazing, incredible, divinely timely book!  I have read it through once and am starting it again.  The message of her book can be summed up in these quotes:

"What a waste of an illness or injury if we read--or go on talking--day and night about that illness, that injury, and not about the God who allowed it for His own sovereign reasons." 


"Don't waste your suffering by retreating into yourself."

God has a plan and a purpose.  We need to trust that.  It is not always pleasant walking this path, following Him with abandon.  It can be emotionally and physically painful.  But we need to trust in His wisdom and His plan, and not let go of our faith when times get tough.  Trust that He is doing a mighty work in our lives.

"Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day."   
~2 Corinthians 4:16

Whether we are watching someone we love fight for their life, or we are fighting our own battle daily, we are being refined by fire.  I kinda like how Joni puts it.  She compares our trials to the process of turning coal into diamonds: 

"The only difference is how time and pressure (a lot of pressure) will change this earthly garment into something so bright, so precious, so perfect, so multifaceted, that it will shine like a star in the night sky."

I want to shine.  I want to trust Him and rest in Him during the times of extreme pressure.  Some days that is easier than others. 

"Any such crisis is meant to awaken us to the reality of God, His nearness, His care, His presence, and His ever-present help."

"Affliction has a way of jackhammering our character, shaking us up and loosening our grip on everything we hold tightly."

Please Lord, open my eyes and heart to see what truly matters.  Help me to let go of the insignificant and focus my life on the eternal.  Help me to hold on to You with all my strength in those times when everything is crumbling around me.  And when my strength is gone, fill me with Yours.

Summer came roaring in this year.  So far, it shows no signs of easing up.  But I know He has me in His hands, and there is no other place I would rather be.

"Yes, I pray that my pain might be removed, that it might cease; but more so, I pray for the strength to bear it, the grace to benefit from it, and the devotion to offer it up to God as a sacrifice of praise."