Will I shatter or simply fade away...?

The human body really is amazing. When you think about everything that has to work together for you to be able to go about your day, do the things you don't think twice about, it really is an amazing thing. But of course when everything is working correctly you usually don't think about how it all works, you just kind of know it works and maybe you appreciate it for working or maybe you don't think about it at all. Maybe you take it for granted, maybe you abuse your body by throwing alcohol and other substances into it without thinking about what it might be doing to your body. I'm not judging, not saying it's wrong to live life and use your body to the fullest. But what would you do if one day your body stopped working right?

It might not be anything major like a heart attack. It might not be anything you notice right away but something that sneaks up on you. And then before you know it, you live your life through a computer screen, days spent in bed with the covers pulled up tight and a space heater close by to keep the chills at bay. Something as simple and necessary as eating becomes a daily struggle - between waves of nausea you try to get in a few crackers or a bowl of jello. When you stand up, you have to brace yourself until the spots before your eyes and lightheadedness fade away and you know the danger of blacking out has passed. Your body is falling apart. And you wonder how you got here!?!

This life certainly wasn't the one you were headed for back when you would imagine the future when you were little. Or was it? Was this the life you were predestined for from before you were born? Do you even believe in destiny? Was there some choice you made, some path you went off on that has brought you to this point? And does fairness play any role in it all? Questions. Questions upon questions rolling around in your mind until there is no quiet. (And you wonder why you have insomnia!)

You watch people walking around and wonder if they ever think about how lucky they are to be able to walk around under their own power. You watch people sitting down for dinner, plates piled high with meat and pasta or rice and dessert not too far off, and you wonder if they see that there are people who rejoice on days when they are able to eat (and keep down) more than saltines and jello and add up more than 300 calories at the end of the day. You see people so preoccupied with their weight they are willing to do anything to lose a few pounds and you wonder if they realize that there are people struggling to get enough nutrition to keep the weight on and who dread seeing the scale drop down another pound or two. You see this all because it is your world, but to the rest of the world it's an alien language.

There are no easy answers, despite the need for them. There are no easy fixes, despite the desparate yearning for them. There are doctors who don't listen and friends and family who don't understand. There are people who will call you a hypochondriac, say you are faking it, tell you it's all in your head, or just plain ignore that there is anything wrong. There is no avoiding this. So you must not only endure the days of pain, fatigue, your body going out of whack and falling further and further down into a pit of malfunction, but you must also deal with these people and use the precious energy you have to try to educate them, reason with them, and help them understand what you are dealing with.

As you can feel your body slipping further downhill. The questions keep invading your restless mind - Could I have done something to prevent this? Is there something more I should be doing now? And as you feel yourself getting worse, you must now possibly deal with the awful process of convincing doctors that you really do know your body. (If you could only tell them the treatment you need and have them listen to you, the process would go a lot smoother.) You fight them, you fire doctors, you search for others, and all the while very few people seem to see the slipping your body is still doing. And the questions of course continue and cannot be answered yet - What will finally happen to make the doctors believe me? Pay attention? Do something? How far down can my body fall before I crash on something? And can a body in this disarray shatter or will I simply fade away...?

I see the world through different eyes...

I see the world through different eyes. Some days my eyes are glazed over, making the world look foggy and blurred. The world doesn’t seem real. But what is “real”? Are you real? Am I real? This room? Are the flowers outside really flowers, or are they simply what I believe flowers should be? If I wanted to believe the sky was really red - I mean really, truly, deep down in the bottom of my heart believe the sky was red – could it be?

I see the world through a fog, through a tunnel. It’s like everything is distorted and nothing seems to quite be in the room with me. Everything is happening in some alternate universe that I have just tuned into on my TV, but the TV is in my brain. The TV channel doesn’t come in clearly but I’m just not able (or too lazy) to fix the antenna to make the channel come in cloudlessly. Occasionally the channel goes out completely and I’m left on my own for a while, with my own thoughts (if I happen to have any at the moment). And sometimes my thoughts take over and it doesn’t matter what is on the TV at the time, my brain shuts it off and takes over, going into overdrive, running through lists or examining past experiences. It seems I have no control over my own brain during these times, but I can gently try to bring it back to the television, turn it back on, and try to tune it back in the best I can.

Imagine seeing everything – people, places, events, the world, life, everything – through a fog, a cloud, a dirty lens. Imagine feeling like you’re never seeing things clearly. Like you’re never really experiencing things. Like you’re in a jumble of a dream that is your life and you don’t know how to make things clearer. Your television is missing that “clarity” knob and you can’t get things into focus. This isn’t the “normal” sense of lacking clarity that everyone except for the most enlightened experiences. This is in a class all its own. Part fatigue, part brain fog, part noodle soup, part orange Jello, part swiss cheese brain. All of this adds up to what it’s like to have a brain that just doesn’t seem to be “all there”.

I see the world through different eyes. Once in a blue moon (or more like a pink moon, if there’s such a thing, because I’m sure that’s less common) I have a moment where I can see things clearly, where the fog clears for an instant and I can see people and things the way they really are. It only lasts for an instant before things go back to the way they are, but it lasts long enough to give me a taste of how things could be and that’s enough to keep me fighting so that maybe, just maybe, someday I’ll have a whole life filled with moments like that.

--February 5, 2006

This is what it's like to be me

Wake up in the morning,
Reach for the remote.
Don't know if today I'll sink or float.
Choke down some toast,
Force down some tea.
This is what it's like to be me.

Take my morning meds,
Think about a shower,
Watch the time go by, hour after hour.
Answer some e-mails,
Watch some tv,
This is what it's like to be me.

Maybe get dressed,
Maybe spend the day in bed,
Maybe spend my time with hot packs surrounding my head.
Take more pills,
Wonder how tomorrow will be,
This is what it's like to be me.

I live my life,
Day by day, hour by hour,
And I try to never let my mood get sour.
I don't live in the future,
I don't know how it will be,
This is what it's like to be me.

I deal with things,
As they come my way,
My life will someday be better, I pray.
But this is my life,
This is my fight,
And I know one way or another things will be alright.

I have faith in myself
And I have faith in the unknown
I have faith in the kindness and peace the world has shown.
I fight for myself,
I fight to be free.
This is what it's like to be me.

(I don't remember when exactly I wrote this but I think it was sometime in the spring of 2004 when I was seeing a new doctor and a lot of new medications.)

A Day at the Amusement Park

I have this image in my mind – all of us are at the amusement park. We’re all in line for tickets to go on the rides. Some people choose to go on the Merry-Go-Round, some choose the Sudden Plummet Drop, some get in line for the roller coaster that throws you upside down and leaves your neck slightly out of line from the rest of your body, and some people choose to play it safe and keep their feet on solid ground altogether. For the most part, everyone has a great time at the amusement park. The Sudden Plummet Drop provides just enough of a stomach lurch to make you bypass the next snack bar but you recover quickly enough not to think twice before jumping at a second ride on it; the games are a good balance of frustrating and satisfying and those big teddy bears are always just out of reach for most; the cotton candy is sweet and the hamburgers piled high with ketchup and pickles.

But for some of us at the amusement park, somehow we get stuck on the wrong ride. Our tickets were for the go carts, but somehow we ended up on the roller coaster – the one that twists and turns, plummets down a huge drop leaving you nauseous only to whip around a turn so fast that you’re not sure where you left your stomach. And just when you think the ride is over and you’ll finally come to a stop and have the straps holding you in loosened to let you out on solid ground again, you see that you’ve only come to another mountain to climb inevitably followed by another hill to go down. For a while you think the ride is just temporary and after a while you’ll be able to get off and go enjoy the rest of our day at the amusement park, go have your ride on the go carts, have your cotton candy, and win your stuffed animals (or at least try). But after a while you realize it’s not going to be that simple. This isn’t going to be a normal day at the park. So you start looking around for someone to help, someone to show your ticket to so you can prove you weren’t supposed to be on this ride at all and there has been some terrible mistake. But no one is there to listen to the mistake that has been made. And you panic.

Perhaps panic isn’t the right word. Panic implies that one knows something about what’s going on with the situation. In this case, it’s more like anxiety or fear of the unknown. You are alone on this roller coaster car, barreling along this track through twists and turns, ups and downs, with no idea where you’re going to end up or whether or not the next crook will bring the end of the journey or just another neck-cracking bend. You’re isolated on a ride you never signed up for and you don’t know what is happening. Can you imagine this? This is what it’s like to live with a chronic illness.

But slowly…very, very slowly…you begin to see another car in the distance ahead of you. It’s on a path just next to yours and isn’t going quite as fast as you are, as though it has found a little more of a steady pace but still isn’t quite sure of it’s path. As you approach the car, you can see that there is another person in the car, looking just as alone and confused and scared as you feel. Eventually you come up next to the other car and give the other passenger a friendly smile, trying to make you both feel a little more at ease. You have never met before but you both instantly know that you have been through the same thing so you have an understanding and without explaining you are able to comfort each other. You don’t feel so alone, but still neither of you has any idea where you will end up.

Over time, you meet up with more cars. That same understanding is shared, despite the fact that each of us have come from different lives before we decided to come to the amusement park that day. Each car is on its own track with different twists and turns and hills to climb, but along the way the tracks run close together so we don’t feel so alone as we go through them.

Fortunately, this is what it’s like to live with a chronic illness when you have friends who know. They understand. It's hard to find friends in your real life who know what you're going through, they are few and far between. But in the world of online groups, friends are as close as your computer. And without ever meeting them they understand what you're going through. They’re there during the hard times when the ride seems never-ending and nothing seems to be going right. They’re there when things finally start to look up and you can celebrate that the ride is becoming a little smoother. And eventually you may be able to get off the ride altogether and enjoy a nice day at the amusement park with these friends. Maybe the break won’t be forever; maybe just long enough to get that cotton candy and maybe grab a game of ring toss, but enough to remember that life isn’t always about preparing yourself for the next obstacle. And in the mean time, the twists and turns, the hills and valleys all seem a little less difficult to handle when you’re facing them with people who really know what it’s like.

--January 17, 2006

I'm trying to tell you something

I’m trying to tell you something

I’m trying to tell you something about my life.
About how I struggle from day to day
To simply live.
About how I wish, hope, pray.
About how I yearn to rid myself of the pain.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.

I’m trying to tell you something about my essence.
About my true being.
About how I long to break free from this body,
From this vessel that has endured so much,
And be free.
Fly with the wind,
Laugh with the trees,
Dance with the eagle as it soars through the sky,
And be free.
Be free to be me.

I’m trying to tell you something about my soul.
About who I really am.
About the way I search for belonging,
For acceptance,
For where I belong,
For my place in this world.
About how I long to feel warm,
And safe,
And know who I am,
And know there is someone who knows me,
And loves me,
And will always love me.
Someone who will hold me in their arms when I cry,
And calm my fears,
And complete my soul,
My longing,
My belonging.

I’m trying to tell you something about love.
About how I long to look into someone’s eyes
And see myself reflected back.
To see myself through the eyes of love,
Someone else’s love for me,
Unconditional,
Unwavering.
About how I sometimes wonder if this exists,
If there is really someone out there
Who will look into my eyes
And see all the way to my soul.
And bring out of me all that is beautiful
And hidden
Deep within me.
About how I want to know that I’m complete,
Loved,
Happy,
And that I make someone else feel the same way.

I’m trying to tell you something about who I really am,
About my true being,
My core,
My center.
About how I am just energy,
Just light,
Pure and white and simple.
About how I radiate and shine.
About how few can really see me.
Few really know me.
Few have seen my light.
About how it is protected,
Deep within me.
About how I’m afraid that if I let it shine free,
It will be lost forever.
About how I long to let it shine free,
To let everyone see how beautiful it can be,
How beautiful I can be,
How free,
How real,
How pure and good.

I’m trying to tell you something about my life.
About how this body is not mine,
Not me.
I am not this body.
I am simply contained within it.
--October 17, 2003

The Invisible War

The Invisible War
I'm waging a war today. My eyes are bloodshot and sore but, no, they did not get that way from a long night of drinking (oh, how I wish they could have gotten their red tint from drinks). My head pounds. I feel every skipped heartbeat, breath catching in my throat and leaving me a little scared of what each little missed thump means. My cold hands and feet are buried under covers, exhaustion leaves every cell heavy. My stomach churns and threatens upheival. Today blurs into yesterday and soon tomorrow will become part of that blur. The battle continues…

Perhaps it would be easier for you if my scars were visible. Perhaps you would find it easier if you could see my headache, if I could draw lightning bolts coming out of my forehead and temples. Maybe you could understand a little better if my cold hands and feet turned blue or if each skipped heartbeat could be seen on the outside. If I was bruised and battered on the outside the way I'm bruised and battered on the inside you wouldn't question my illness, how I'm feeling, my disabilities, this war.

I blend in, I look fine, I hide myself beneath this skin that has become a cloak and a mask. You can't see the battles, the battalions that I send out everyday in an attempt to fight an invisible enemy. You can't see the profound amount of energy it takes to do the simple things because so much goes towards fighting off the ever-advancing enemy lines. A shower is exhausting, a trip to the grocery store out of the question on all but my best days, and "pushing it" to go out and do more "fun" things leads to days or weeks in bed recouperating.

This is life. This is the invisible war that no one can see, but I can feel. I fight for myself. I fight for you, that person out there who supports me and cares that I'm here and brightening up the world in whatever small way I can. I fight for my friends, those amazing people who are there for me, even when they themselves are fighting their own wars and feeling as bad as I am (or worse) - they offer themselves unselfishly and I have become more a part of the world even as my body fades and seems to become less a part of it. I fight for life, because the alternative is to give up, and giving up is not an option.

--February 2, 2006