Friday, April 26, 2013

Bleeding Red

Grief is messy
It's scratching at the surface, under my skin
It's a discomfort that makes me want to pull out my hair
It's anger and tenacity which sometimes gets mistaken for strength
It's fear, and vulnerability
It's desperation
It's neediness
I've described it on a number of occasions as bleeding out
I got sick, and then I got diagnosed, and through out this whole ordeal I've been feeling like I'm bleeding out
It's the little things you notice first
it's the pale skin, and the tired eyes
And then comes the irritability, the anger, the moodiness
It's this ache in my chest, right where my heart is. It's gory and messy. It doesn't hurt really. It's just this small twinge whenever I walk or talk or laugh or breathe
Loneliness, desperation, neediness
These are all symptoms of the bleeding out
Maybe it's a good thing. maybe it means one day I'll have all new blood, healthy blood
But for now, it just hurts. It's sticky and red and it's not neat and pretty
I tend to edit myself a lot, to make things sound poetic and neat. I tend to miss capturing the raw and the real and the honest on paper.
In these bleeding out days, I think it's my fragility that scares me more than my mortality
Death doesn't scare me. Neither do needles, or doctors.
What scares me is this sort of desperation that needs to make everything ok, the neediness I feel, the vulnerability I am forced to succumb to.
I kept waiting for someone to notice me, to pay attention to that pale girl losing blood over there in the corner. But it didn't really happen.
No one offered to tend to my grief, or sit with me, to acknowledge that what happened to me was not ok and awful and world changing.
But the world kept spinning. Life went on.
And so I did it myself. Or I tried to.
I wrote too much and watched too much television and threw all my time and energy into eating the right foods and complained too much and avoided friends because I wasn't brave enough to trust them with my grief. After all, it was all I had left of normalcy.
I was looking for a cure, for some magic to not necessarily take away my conditions but to minimize that gaping hole in my chest it seemed only I could see and make it stop hurting, make me stop feeling like I was losing blood every time I took a breath.
I wrapped myself up tight in un-forgiveness and anger and isolated myself, tied the cocoon I'd made myself up tight and stamped it shut, locking myself inside.
With bare hands, I'm digging through all this gory, messy blood that's coming out of me.
It's not pretty, and it's not fun.
It's exhausting and lonely and it scares the crap out of me and I still don't have all the answers on how to stitch myself back together.
For now it's just duct tape and staples.
But as I look through all this gore and misfortune, as I look at myself in the mirror and see the things other people look past (The pale skin and the tired eyes, the stickiness from the metaphorical blood that keeps coming out of me), I see something else too.
I see life.
It's red and it's sticky and messy but it's a sign I'm still alive
So the blood keeps coming. Soon, I imagine, it will stop pouring out of me and I'll start to build new blood, better blood.
Soon, I imagine, it will stop hurting and aching and the grief will stop feeling so consuming and I'll stop feeling so angry and desperate and lonely and vulnerable. At least, I hope so.
But until then, until that hole in my chest stitches itself closed and the new, better blood comes and it all nudges me back up to live, I'll just sit here, with my pale skin and tired eyes and all those other symptoms of the metaphorical bleeding out that's going on inside of me, because this bleeding out is all I have left of the before.

Monday, April 22, 2013


I've got the talking stick, what am I supposed to talk about?
The hours are slow. Most of the time I just stare at the ceiling. It hurts to even breathe.
This is the side of chronic illness that isn't so pretty. It's not butterflies and rainbows and positivity or even brutally honest jokes on pinterest laden with dark humor. This is real. This is lying in bed for hours at a time when it hurts too much to get up.
It's just a flare, I tell myself. It will get better, right? One day out being normal and I'm in so much pain it hurts to breathe, or move, or even think sometimes.

Am I supposed to talk about my feelings? I don't know... I'm good. I feel good. My feelings about being sick... I don't really have any feelings about being sick
Some days are worse than others. Some days it feels like the only noise I can make is harsh and fierce and unprecedented. I just sit there and cry. Not because I'm sad. I'm not sad. I'm just... tired.
I'm tired of living in this body that's broken down and tired of people not understanding and tired of having to defend myself.
Some days I look in the mirror and barely recognize the girl I see there. She's so pale, and her hair is matted to her head and she has no makeup on. Her eyes are kind of empty and sad. She looks fragile. She doesn't look like me.
But, then again, I don't know what I look like anymore.

I can show you. You can touch it, if you like.
See this scar here? This is from where I cut my knee open when I was learning to ride a bike.
And this one here? That's from when he broke my heart.
And this one, this one right here, that one is from the IV in my neck I had when I was a baby.
That one is from the surgery
And that one is from the monsters, the little ghouls that lurk in the dark places of my soul. You don't see them, really. You don't see their scars. But I promise you they are there. I promise you sometimes my thoughts can do more damage than the slice of a scalpel.

They told me I'd be getting sick but actually I'm just getting awesome
Considering everything I'm lucky, right?
I have an amazing support system, fabulous doctors, and the chances of me dying from my disease is pretty slim.
I have this little book I keep beside my bed, and I write down things I'm grateful for. I'm at 600 or something like that.
Want to know what the first thing I wrote in it was?
My crazy sexy chronic illness.
Because I'm grateful, I am. I'm proud of who I am and I wouldn't want to change.
Not to brag or anything, but I think being sick has made me awesome. It's who I am. Or maybe it's just showed me who I am.
I'm Alisha
I'm 16
I'm a writer, a dreamer, a daughter, sister, niece, cousin and friend
I'm a child of God
And, oh yeah, I just happen to have a couple of chronic illnesses
and I'm kind of awesome

Sure, I know that my body is trying to eat itself, but what if it isn't? What if it's changing?
I think I might be turning into glass. I think all my bones and all my muscles and all my skin are turning into glass. Hard, smooth and clean. Fragile, yeah, but strong.
I watched this movie once, about a little glass doll. She was broken, her porcelain legs shattered and the edges all jagged. The powerful wizard, he fixed her using some glue.
She turned out to be really brave. She was made of glass, yeah, but she was strong.

You'll think I'm nuts, but I've got the talking stick

Tuesday, April 16, 2013

Born this way

I think there's something to be said for suffering. We live in an age where we are so blessed that we can medicate when we need to; headaches, childbirth, dentistry, fevers, surgeries... But as a result, we've grown to expect less suffering in life - and in death. We even attempt to medicate heartbreak. Don't get me wrong - I've downed more than my fair share of painkillers when I've needed them - and I've dealt with the annoyance and frustration of suffering with migraines that hurt more than my natural childbirths. I've given medications or cough candies to my children... and while I understand that pain is not fun - and, yes, I do try to avoid it - or seeing my children in it, some days I wonder if we're trading off something precious when we make it our goal to avoid suffering completely.

1am had come and gone and thanks to some wonderful insomnia, I was still awake. Staring at the ceiling, journaling until my hand started cramping up and I couldn't think straight enough to finish a thought.
I was thinking about suffering.
In chronic illness, like in a lot of things, I think, there are a lot of misunderstandings. It leaves the patient (namely me, yesterday) feeling alone and frustrated. It feels like on top of actually feeling the physical pain, you have to defend it. Everyone seems to need a reason for why things are the way they are or why I'm feeling the way I am.
I'm tired of hearing everyone's opinions on how I should act or how I should treat my illness and my body. I'm tired of people in general acting like they have some sort of right to how I live my life.
And I feel like, in dealing with a chronic illness, people expect you to make yourself smaller. If you're having a flare, you have to have done something wrong. If you can't get out of bed in the morning or can't take a shower it's because you're not trying hard enough.
I think a lot of people expect patients with any kind of illness to be positive and happy all the time and that's really not true. And I feel like people are uncomfortable when they see that side that is real and honest and that really sucks sometimes.
"Stay in your little closet until you find a cure," They'll whisper, "Once you get a cure, then you can inspire people. But right now you're sick and unless you can pretend like that part of you doesn't exist then stay back."

I think, as a society, we're so quick to shrug off suffering. There's a quick fix for everything, even though it's not always that simple. One of the problems with this I see is that no one ever teaches you how to live with that pain or how to embrace who you are now.
Yeah, my life changed dramatically when I got sick. But that's not necessarily a bad thing. But I get treated like it is. I get shoved back into the corner, afraid to be myself because I'll be judged or pitied or whatever. I can't be real because that's wrong. I have to just sit there in my nice little closet and say magic words and believe I can get better and be positive all the time and then, once I get better, then I can come out.
I think more and more people are acting like suffering shouldn't be allowed. If you're sick, you take medicine and get better. If you're depressed, you take pills and make yourself happy again. As a society, I think we're uncomfortable with pain and suffering and anything that's different. There has to be something wrong with you and you have to fix it as soon as possible. And you better not inconvenience anyone with your pain. Basically sit down, shut up and smile.
I think this naturally brings me to a question of, "Do I want to be sick?" Well, obviously not. No human being in their right mind would choose agonizing pain and feeling misunderstood and being judged for something they can't control.
Do I believe I can get better? Yes. I totally believe if He wanted to, God could heal me.
Do I think it will happen in this lifetime? No, I don't. It's a possibility, but I don't believe it will happen, at least not in the way everyone expects it to.
But, here's the thing, and it's something I'm still learning too, there's nothing wrong with who I am right now. Being sick has taught me so many things and I've had so many wonderful opportunities and I'm proud of who I am. I don't ever want to make myself smaller or try to fit inside neat little boxes. This is who I am and I'm not going to stop being myself because it makes someone uncomfortable.
Being sick is a huge part of who I am. It impacts my daily life. And while, yes, it sucks, I wouldn't ever want to change it because it has made me who I am today. And I'm proud of that person.
I'm not looking for a quick fix. I'm not looking to make myself smaller and quieter and more socially acceptable. I don't want to hide those real honest parts of me and what I go through and just gloss over things and pretend everything is fine.
It's ok not to be fine. It's ok to be different. It's ok to fight and struggle and cry.
I am open to healing. I'm working every day on getting better and on feeling better. But right now, this is who I am. For the rest of my life, this will be who I am, regardless of whether or not I get a 'magic cure' or not. Every single day of my life I will fight and struggle and I'll have flares and be sick. It doesn't mean I did something wrong or that I could have prevented it. I can't live my whole life in the what if's.
I'm open to all the possibilities my future will hold. Maybe that does mean the doctors finding a cure for my diseases or maybe it means me having less flares and feeling better or maybe they won't find a cure and I'll spend the rest of my life walking this tight rope between feeling good and feeling like I got hit by a bus. And I'm ok with that.
Are you?
I'm doing this my way. I'm doing this honest and real and I'm not stifling myself to make you comfortable. I'm going to shine, either come with me or get out of my way.

Sunday, April 14, 2013

The future, memories and an 18th birthday party

For the past little while, I've been thinking about my future.
My life is happening right now and it's big and exciting but it's also scary and there's a million different options and choosing one feels like the slamming of thousands of doors.
I've been feeling like everyone around me knows what they're doing, maybe for college or maybe just for the summer. Everyone's moving forward and I've been feeling like I'm being left behind.

Tonight was my friend's 18th birthday party. We laughed and watched him drink his first beer and scratch lottery tickets and we played games and I realized in that moment that these are the times I want to remember.
When I think back on high school, I want to remember this. I want to remember sing alongs around the kitchen table and bad jokes and the sound of laughter. I want to remember these people and how it felt to be comfortable and for one moment the future didn't matter and the past didn't matter and all those messy emotions didn't matter. All that mattered was that I was there, in that moment, surrounded by the people I love and who love me, laughing and making memories.
The future is here and it's now and it's waiting for me and I'm realizing I'll only have these high school days for a little while longer. There's a group graduating this spring, and then next year I'll graduate and life is moving so fast and all that's guaranteed is right now, this moment.
I want to spend that moment making memories.
I know I'll look back on these years and see the hurt. The time I got diagnosed or the time my cousin died and all the times I fell and it hurt and my heart got broken and scarred. They carry an enormous weight. But I believe love carries an even bigger weight and when I look back on these days that's what I want to remember. I want to remember birthday parties and dance offs and sing alongs.  I want to remember bonfires and baseball games and those people that made all of high school worth it.
I want to remember these people who are sewn into the fabric of my life. They are my family. They've seen me at my worst, and love me anyway. They've held me while I've cried and made me laugh so hard I could barely breathe. These are the people who have claimed me, in good times and in bad. These are the people that are bearing witness to my life.
And that's what family is. That's what love is. It's being there for the big moments, and the little everyday ones. It's putting up with someone's bad qualities because, somehow, they complete you.
Love is a leap of faith and I'm learning a soft landing isn't always guaranteed. Sometimes love is going to hurt and it will be messy and hard.
But holding yourself back, away from that love doesn't make anything any easier. Trying to separate yourself from the people you care about because you're growing up and separation is inevitable doesn't make the goodbye not come.
The brave thing is loving those people and making enough memories to carry you through the growing up years, the moving out and moving on and leaving behind this comfortable high school life. Some things don't last forever, but some things, like memories, do. And I only have one chance to make these memories and I don't want to look back and wonder why I held myself back from love. I want to be there for the moments I can, the birthday parties and the laughter around the kitchen table.
This evening, at my friend's birthday party, I wasn't looking backwards or forwards. I was just losing myself in the here, the now, these moments that are guaranteed and filling them with as much laughter and love as I know how so that one day, when the growing up and the leaving does happen, I have these memories.
Tonight I realized everyone at that party is my family and that I don't want to spend my life standing on the outside, holding myself back from love because I'm fearful of getting hurt.
The future is coming, whether I like it or not. And I want to be excited for it. I want to live and laugh and love with my heart wide open. I want more moments laughing with friends around the kitchen table and making jokes over the chip bowl and having those moments that are so perfect that I think I'll miss if I blink in the wrong instant.
I want to make memories while I have the chance, because the future isn't guaranteed and all I have is right now.
And this moment is made for living and dancing and singing and being brave and opening yourself up to love, even if it hurts sometimes.
In the end it's worth it. In the end none of the little things matter and all those fights and the tears, they don't mean anything. The only thing that matters are the people sitting across from you at the table at the 18th birthday party, the people who claim you and bear witness to your life, and making memories that will last forever.
And it's times like this that give me the courage and bravery to face my future.
The future is coming, looming big and bright
And I, for one, can't wait