Sometimes it's hard to jump into a place and discuss your deepest thoughts, but there are some things I think about and I may as well put them down where I've been invited to.

I have been given a timeline for living. I'm sort of used to it now, although I still think of it every day. It took care of that old question "Would you want to know, or not want to know." I was already told.

It changes so many things. Each day or week things get a little bit harder. You don't run out and get a boyfriend because it wouldn't be fair to drag someone else through this. You don't talk about it with those closest to you because it causes them pain. You just dance alone. And dancing alone sucks.

Another saying: "Live each day as though it were your last." A good saying, but as the end nears you get tireder, things hurt more. You don't have the strength to be the good example to everyone. Why would you want to live like that?

I hope someone will talk to me about this.

Been given a timeline for living? That must be tough to live with. So what is the reason for this timeline? Jeeeezus Christ I would have never imagined that somebody so full of life is counting her days. Can you tell us more?

I have spinal muscle atrophy. Since i was born i knew i was'nt going to live long.

80% die before the age of 6. Now i am 18, can't lift my Arms, hardly swallow or chew stuff, didn't leave house for 5 years(I can't).

I am alone, 24hours a day in my room, without Future.

It's going to end soon, my muscles die, the Heart is one big muscle.

I didn't tell this to say i am in the worse situation. i just try to show peeps that they have alot more.

Your Age ... you are "old", i will never reach that age, if i have luck i get 20. I will never have a daughter, the most thing i wish for. And every night i go to my bed, it's cold, dark ... but i learned to enjoy the darkness.

Face your end, but don't care about it, you seem to be a really lively person. You have persons around you to share the burden, i don't My father cheated on my mum, my sister bashed at my mother so i tried to guard her and got my bones broken. My mother is ill aswell, not as hard as me but hard enough ...


Sorry for my english

Ratrap, you have people out here. And if not before, you do now. You have me at least, not saying it's perfect, but it's something.

When I was 46 I had the kind of heart attack thay call "The Widowmaker". Most people don't survive it. I did. But I did with 50% of my heart muscle killed off. At 46 they told me "5 Years." I figure if I make it 5 and a day I'll thumb my nose at them.

Many people try to tell me that, but reality looks different.

I get along with humans pretty easy, but i don't like to. That's why i am alone, loyality is important to me, and so far no one has been loyal to me.

You seem to be a fighter, so i won't spit out stuff like don't give up etc ... you will do it

Omg Ratrap, I had no idea. Well what can I say to the 2 of you? There's a lot of sadness in the world....

The sad part is the getting there. I've already been to "the other side". No fears there.

Ratrap...you go ahead with what you're doing. friendship and trust don't come easy...but I'll keep trying. That's the nature of me.

Ah why sadness? It's a shitty life, but it's MINE!

Yeah ... trust is something expansive.

There ya go!

And, ya got a half way good sense of humor...but it needs work!

Is it just me or do women like to play with emotes?

I haven't been at the other side yet, i am really curious ...

Does that mean you guys want to "philosophize" about what i saw...or keep it to myself?

If you like to share your experience, go ahead.

We Lonewolfs get wise that way

I seriously want to know what you saw. I was joking about the angels.

I was in an ambulance going to the hospital, having the second heart attack right on top of the first one. I can't explain the pain to you, only that it was more than a body can bear. I remember thinking that I wanted to die because I couldn't hold up under any more of it. Lifetimes later, or it could have been just moments I was not there any more.

There was a mountain before me made of pure light. Like the pain, a thing which cannot be adequately described. I saw glowing trees on it, and roots sticking out from the rocks. Near my feet was a river. It reflected all this beauty from the mountain. While looking in the river I felt others around me. Looking up I saw many people that I knew. My parents and grandparents. My Brother. My daughter. Neighbors from my childhood. And also some people I didn't recognize in appearance, but I did in heart.

I was surrounded and infused with their love, we communicated without words. How much I had missed them. How at home I felt now.

My brother stepped forward. He held out his arms and I was enclosed in his army jacket. I could feel his warmth and I could smell him. I took in deep breaths of him. He told me I would have to go back this time, but the next time it would be up to me.

The next thing I remember is being in the hospital, machines all hooked up to me, alarms going off, people shouting and lights blaring. And I was absolutely enraged at having to be there.

Sounds wonderful, all i see is NOTHING when my pain is that much.

I believe that if god exists he won't let me see things like that, because he is scared of me. I hate him, so much. There is so much Suffering in the world and he just watchs it. If he created us he should take care of us.

a daughter ...?

Wow....and yes did you have a daughter? Any kids who are still alive?

Ratrap...I was so angry with God when my daughter died! I hated him more than anything in the world. But I guess he's big enough to take it. I understand what you're saying.

My daughter Nicole died. She would have been 24 now. When she lived she lived with every bone in her body broken, rebroken, so much pain.
I have 3 other children. Erin is 31, Trey and Kara are 20. Erin is the mother of my two granddaughters. Morgan is 4 and Paige is 6.

Big family nice.

Do you see them often?

Not very often since I moved to Arkansas. Erin lives in Maine, and I went there in July. They may be coming here for a visit in February.

Trey and Kara are in NY, and doing their 20 year old things. College, work, bands, etc. I figure someday they will remember Mom is important for something.

How about you? Who is in your home? Why have you always wanted a daughter?

My mother is living here with her new husband and takes care of me ... well 1hour a day for bringing me to bed.

Why? Well ... i want to put effort into something, to know that a part of my family didn't suffer ... But that's impossible i guess, since i can't offer something to a child, money, doing stuff with her like going out etc ...

And i like girls, they are beasty but cute ... Too bad my time is running out ^^

Edit: My sister will get a baby with the age of 17 in march, and i know it will suffer because she is sick, and to know you can't do anything drives me crazy ...

Does your sister have spinal muscle atrophy as well? Can you tell me a little about it? That's one I never heard of.

Nah she is fine but a psycho, as said she went bashing at m ymother and stuff.

SMA muscle weakness ... my muscles are dieing, right now i can't lift a tup of tea and my arms only a little. They will die until my lungs or my heart is too weak.

http://www.mda.org.au/specific/mdasma.html

I am a mixed up type of all.

Sorry it took so long to respond Ratrap. Company stopped over.

I read the web site. Are you in a wheelchair? And is this a form of Muscular Dystrophy? Because that association was mentioned twice.

The other thing i wanted to tell you about, and maybe you'd consider joining in, is a group I've started through my blog page. It's for Terminal People. We also have some members who are just supportive, or extremely ill but not terminal. Sure not a lot of members, nothing to be overwhelmed by. Just let me know if you want web addresses, OK?

It's too bad that your sister is throwing away her life like that. Maybe she will grow someday, before it's too late for that baby. I'm sure you can help by just loving her.

Well if i can't lift my arms i can't walk i guess
So yes wheelchair.

I am not good at that stuff, but i can take a look at your site

Believe me, you can't help my sister. How do you love something so pure evil?

It's no form of a Muscular Dystrophy. It's very rare, and a Muscular Dystrophy is not that rare.

Ah just woke up :S and i love being under so much meds

Know what you mean about the meds. I take them 4 times a day, and the dinner plate full thay I take at night is still working when I wake up at this God awful hour of the crack of early!

I added you on messenger. Don't be dissapointed if I am not onthere often. But if it's something urgent..yell at me on here to get on messenger, OK?

I meant Love the baby. I know it would be hard with your sister. I have some of those in my own family.

Do you have anything that supports your spine? Or your arms or legs, or can't that be done?

I am bionic. I have a defibrillator implanted that is also a pacer and a heart resynchronization device. If anything goes wrong a phone can be held in front of it and they can read it off at a hospital or the doctor's office. Last summer I was on my way to dying again, and when they implanted this I turned pink.

OOps! This is my site: My Webpage

You may be able to look at the group by clicking on it. It's towards the bottom of the page under my kids picture. it's called "Love and Light with grieving".

Wow, nice site!

Well i don't have contact to that part of my family so i won't get the chance to love the baby

I'm sorry about that Ratrap. I know it would mean everything to you to have a relationship with the baby.

Yeah, thanks.

Well i will hope that she becomes more mature and doesn't let her baby suffer ...

I got this in an e-mail today. You might think it's kind of hokey. But it's really not. I'm not a religion pusher, or very religious myself but I thought it was good. Now...don't run away from me Ratrap!

I asked God to take away my habit.
God said, No.
It is not for me to take away, but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary

I asked God to grant me patience.
God said, No.
Patience is a byproduct of tribulations;
it isn't granted, it is learned.

I asked God to give me happiness.
God said, No.
I give you blessings; Happiness is up to you.

I asked God to spare me pain.
God said, No.
Suffering draws you apart from worldly cares
and brings you closer to me.

I asked God to make my spirit grow.
God said, No.
You must grow on your own! ,
but I will prune you to make you fruitful.

I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.

I asked God to help me LOVE others, as much as He loves me.
God said...Ahhhh, finally you have the idea

first part made me angry but the last one is nice

You mean I was partially successful? WooooHoooo!

I been having the really low energy times with this heart lately. It's discouraging. And my lungs are filling with fluid. Up and down. One step forward and two steps back.

Hey, at leas you can do steps

That's true. Hey...another person up at the crack of early!
Good Morning Ratrap.

Thanks, but if it's good ... sooo tired and headache :S

What do you do for yourself? I mean..how do you make yourself feel better? Or can't you?

Not really hmm ... playing games is always the same since years.

Ilike the few hours i watch tv junk Mondays Lost, thursday O.C California etc

But the rest of the time it's boooooooooooring.

Isn't reading books an option?

Yeah, i have read David Eddings and Raymond E. Feist but now i can't find other good books like them

Never heard of them. What do they write?

David Eddings: About a boy finding his magical Power and fate. With funny chars. A thief, ranger etc. Knights.

Raymond E. Feist: Same But different somehow hehe

I like stories about Mages, thieves, knights, love lots of fun. And it must be a long story.

Eddings story is ... 12 books long, Raymonds 24 so far.

24 so far would certainly qualify as a long story!

I like the old stuff. Steinbeck's my favorite.

How are you doing this morning?

Took a long nap and i am fine now. Maybe i will go to cinema tomorrow if my status is good enough (It's only one mile away, easy to get there with wheelchair as long as my back allows it :S)

Reminds me of something I wanted to ask you about.

Wouldn't some sort of brace on your back help?

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 this time, with a kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have ...... 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 ....... 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 ........ 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 ......”. 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 choice, 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 ......., 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 .........

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 ....., 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".

Well, yeah but if you think about how long my life was/will be i made the decision not to take the stress.

Wow ... I've thought that no one could bring my feelings to a point like that.

It was great to read that, thank you.

And no one knows how many spoons i have every day and that i can't even use them for everything i want because i feel like a bird in a cage with broken wings ...

That was good, wasn't it Ratrap? It can help other people to understand too. Feel free to copy it and keep it for whoever you need to make understand. It helped me explain things a lot of times.
I wish you extra spoons today.

I will, thank you