I see your true colors...

When you live with a chronic illness 24/7, oftentimes your life doesn't feel like your life. Life for the most part doesn't become about what you want, what you'd like to do, what you choose. Instead, your body is in control most of the time. Waking up, the question isn't, "What would I like to do today?" It becomes, "How much energy do I have? What hurts? What is my body capable of doing today?" And many days there isn't even a question, there is simply a statement, "I have to stay in bed today." And many days revolve around trips to doctors - neurologists, gastroenterologists, primary care physicians, and a million other specialists whose appointments fill up the calendar. And in the midst of this predetermined life where you have so few real choices, a question pops up, "Who am I?"

This, of course, is one of the great questions that everyone asks themselves as they're growing up, becoming themselves, but for those growing up with a chronic illness it's different. A chronic illness has a way of becoming a blanket, a mask, taking over and becoming an identity that you never asked for. When you get sick before you've had a chance to create an identity for yourself, your left wondering how much of yourself is really you and how much is the illness. What would you be like if you weren’t sick? Would you still have this quirk or that silly habit? Who are you underneath the blanket this illness has placed on you?

All of these questions have been part of my thinking for a long time. I think for the most part I’ve given up figuring out who I’d be if I wasn’t sick because I’m not that person anymore - I’ll never be a person who was never sick. Instead, I have to try to dig down past the blanket and mask of chronic illness and find my true colors. So, the other day when I was watching TV and heard part of the song “True Colors” on a commercial I realized that this song really is a song for people with chronic illness. I had never listened to it this way before. So, here are the lyrics, here is a link to listen to the song (right click the song title and select "open in new window" so you can look at the lyrics while listening to the song). Take a minute to listen to it and hear what I hear when I listen to it now. Let your true colors shine!

True Colors

You with the sad eyes
Don't be discouraged
Oh I realize
It's hard to take courage
In a world full of people
You can lose sight of it all
And the darkness inside you
Can make you feel so small
But I see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow
Show me a smile then,
Don't be unhappy, can't remember
When I last saw you laughing
If this world makes you crazy
And you've taken all you can bear
You call me up
Because you know I'll be there
And I'll see your true colors
Shining through
I see your true colors
And that's why I love you
So don't be afraid to let them show
Your true colors
True colors are beautiful,
Like a rainbow

Yours,
Penguini

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.

Yours,
Penguini

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 upheaval. 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 recuperating.

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.

Yours,
Penguini