coffee black and egg white

It's always interesting to see how I've come and where I've been.

This is a poem I wrote in 2007. It shows how trapped in depression I was, which is I think what makes it interesting. It saddens me to see how trapped in depression I was, and also that Christians cast the stink eye at me for being that depressed. Um, Psalms anyone!?!

Silent cries echo upon deaf ears;
a reminder of childhood fears

Resounding silence fills the room...
A whisper of agony, a tale of doom

Crimson scars lined up one by one,
telling a tale of a battle begun

Cerise tears rolling down her arm;
Fighting the enemy of self harm

In a world that no one can see,
An orphan in her own family

A hand reaching out for affection...
and a life going in the wrong direction

A scream that remains unheard,
visions that are tainted and blurred

Fighting a battle against herself;
for no comfort comes from anyone else

A razor cradled in a small hand;
carving a pain only she will understand

A step in the wrong direction;
another imprint, another imperfection

Faded wounds are setting the pace
each moment another step in the race

Finding a moment of shelter and peace
in that time of bittersweet release

And as the clocks chime their last ring,
she lets out her final hushed scream

Inside a disabled person's mind.

I am disabled. There's no easy, sugar-coated candy-sprinkled way to say it. I was born with a fairly common genetic disorder called NF1 and the vast majority of my other issues stem from it. And the ones that don't are the rare ones/unheard of disorders.

I'll never do many of the things others do. I'll walk with a limp, I'll struggle down stairs. I won't run and I won't jump. I'll sometimes need help carrying things, and I might need help up when I take a tumble due to my ataxia.

But I am still human. Don't talk to me like I'm deaf - I hear you clearly. Don't mock me when my back is turned - I am not blind. And even if I were deaf and blind, I would not be immune to your cruelty.

I am still like you. It hurts me, too, when people act like this because of a disability. But most of all, do not pull God cards on me. Do not tell me that if only I had enough faith, I could be healed. If only I prayed more, I could be healed. For each time you tell me that, I can point you toward a Godly woman who died of breast cancer. I can point you to a Godly man dying of prostate cancer. I can point you in so many ways.

I believe that there is a God who heals, but His healing isn't always physical and isn't always in this world. Sometimes, part of God's healing is using medications. His will may be for that woman to undergo that surgery, with the doctor's using the wisdom they gained in school. His will may be for that man to undergo chemo. And sometimes, I believe God doesn't just want to give handouts and wants us to do things ourselves.

So maybe God wants you to get therapy for your self injury, depression, eating disorder, what have you. We're humans - created to fellowship. Maybe it's God's will for you to see the doctor instead of just "praying" and "having faith" that He will heal - maybe he wants to learn to advocate for yourself. Maybe it's God's will for you to take medication - for you to admit that you cannot do things on your own strength and that you need help.

I wish people would think before they told me faith would ill me. I wish people would think of how much it hurts to be told to pray illness away. Do you think I haven't tried that? Do you know how many tears have been shed, begging God to take away my pain and illness, only for my pleas to seemingly fall on deaf ears? Do you know that I've lived with this for nearly 24 years? Do you have any idea how many people have prayed over me?

Think before you speak. And know that even though I am disabled, I, too, have emotions and feelings. And above all, I am a human.

whispering hope.

I don't talk about my faith often. I don't want to be flamboyant about it, because my views don't mess with the traditional Conservative Christian. I do believe that Jesus is the Christ, the Son of the Living God. I believe in the Apostle's Creed.

I don't mesh in with the traditional church though, it seems. I don't *gasp* really care for Chris Tomlin or Hillsong. I think those words right there are fighting words that shun me from many communities. I believe that God gave me my disabilities for a reason, and why I may wish and pray for them to get better, if He doesn't choose to heal them it doesn't make me a bad Christian or him any less God. Sometimes God can and will choose to heal, but it's not always within His divine plan. I may not understand it, and I may even want to cuss him out for choosing this path with me, but it's what I have and it's what I live with.

I like anime, manga, RENT, and Wicked. My clothes are not always perfectly modest (not that I look like I just walked out of a catalog for Slutz R Us but I digress) I struggle with emotional challenges, but that doesn't make Him any less God either. And no, my depression and everything else will NOT get better if I just surrender it to God. Anyone who thinks that is frankly a great fool. I believe that women have equal rights to men. I don't believe that God doesn't give us more than we can handle - for I know that I can't handle a lot of the things I am going through.

And sometimes I doubt God, which many cast the Judgey McJudge eye on me. But David doubted God. Many of the Bible Greats went through dry spells.

living with, not dying from disease

We're kinda taking a different spin from Northwestern Issues today, to write about something that's important to me.

Feb 28, 2011 was Rare Diseases day. And it's interesting, you know? I suffer from a variety of "rare diseases." I'm an alleged "medical oddity." But when I look in the mirror, I am no different from you or you or you or you. I have two eyes (albeit one is cut off in that picture. Fail). I have a nose, a mouth, ears, and hair. I smile and I laugh, but I also weep and I cry. My disorders may one day take my life, but that doesn't mean you should be afraid to get to know me.

I may always walk with a limp, even if I don't always have crutches. I may always suffer from back pain, even after back surgery which will allegedly help it (famous last words, Dr. Dude). There is no cure for my three throat problems, just monitoring. Add in all my other array of stuff, and that's my life.

But you see - I am just like anyone else in many ways. I laugh and sing and dance and hope. I weep and cry and grieve and mourn. I have passions and dreams. I love anime and manga, monkeys and armwarmers, RENT and The Princess Bride. Take away my health problems, and I'm still very much me.

I think at times, I tend to let my health issues define me, as much as I try not to. On one hand, I claim to not let them define me and that I am still me beyond them all. But on the other hand... they very much are me. I sometimes can't hang out with friends (and feel like a friend failure) because my health holds me back. I fall behind in class and ask for extra help because my pain flares. I miss on hanging out due to doctor's appointments. Instead of spring break being a time of refreshment, it becomes an ideal time to fill up with doctor's appointments so that I don't have to miss class.

And what I don't get is how people think I'm strong, how I'm brave. How they couldn't do what I do. But you know what? When it's your life, you learn to live and adapt. I don't have a choice if I do it or not. You don't know how I do it? I don't. Some things give. Some things fall to the wayside. Not everything gets done. It's life.

I don't know what the true point of this entry is. Maybe to see what discussion it spurs about disabilities. Maybe to make people think of what it may or may not be like. Or maybe because my poor blog was looking just a tad neglected and needs life again.