I’ve been ignoring personal emails, and I’ve been avoiding Facebook for about two weeks now. I’ve even been dodging the few phone calls I’ve gotten, one or two which I did eventually get back to. Since I felt more awake today and am trying to get my mind in place, I figured I should at least clean up my inbox. You know how you can still get some comments people leave on FB groups without actually having to sign in? Well, I read a few and one caught my eye.

It had a link to a site I’ve never heard of but now that I see it, I think it’s pretty awesome. They have a Rare Disease Day! 

Hooray for awareness!

I have a rare condition, uh, disease. It’s called Osteogenesis Imperfecta (OI) that I’d briefly mentioned in my overly self-indulgent “about” page. Naturally, through friends of friends of friends I’ve been added to dedicated medical groups on FB, and I learn something new all the time like Wish Bone Day, which is another awareness day but specifically for OI. I’ll let you guys know when I take the time to look at it. I believe it’s sometime in late March or April so it’s coming up.

Anyway, I just thought I’d share so that maybe you could share or just take a look at. The kind of conditions people live with are astonishing sometimes. When I’ve found myself in the ER, I’ve had doctors in the triage give me that look like, “Oh shit, how do I go about this? Ok. Ok. I got this.” It’s that look of false confidence, or in some cases, that look of terror that can only be accompanied by a monstrosity–because, though they may have heard of people like me in medical school, chances are that they’ve never had one right there in front of them. So they feel, and sometimes are, ill-equipped to properly treat.

I also notice that often times studies for rare diseases don’t get as much funding as they should. And they should! Biphosophonate infusions are rather new treatments used for children with OI, especially children with more moderate/severe types like the one I have. Some of these kids are now walking as early as the age of six! Trust me, that’s almost unheard of for a kid with Type III OI. Walking at any age is, well, rare.

It’s all because of studies that eventually lead to discoveries. It’s something my generation didn’t have, and I’m not old guys. But, despite my young and youthful appearance, I feel old. My insides feel clanky and haggard, my brain more crumbled and sour than an old man’s bitter beer face. All we had were osteodomies, which is a more or less crude rodding of the long bones. Yeah, I’m full of metal. My bro used to call me Robogirl even (I didn’t wanna be Terminator Girl). We were fans of Robocop obviously.

So I say a hell yeah, give a tip of the hat and a wink (with the only eye I can wink at the moment) to organizations like these.

In other news, I’m feeling a bit, just a bit, ant-size bit less–for lack of a better word–“depressed” at the moment… just a little less crazy today. Can you tell? Maybe I’m a little awake because I had that physical therapy appointment this morning. Maybe it’s because the sun came out full-time today

Oh god, am I still alive?

February 25, 2012

Dear God/Universe,

I sit here groggily in this pale Saturday afternoon sippin’ on my cold coffee. It’s just the dogs and myself today. All’s quiet and lonesome. But little Luna, the cutest and sweetest little bitch ever, is laying beside me, leaning her furry back against the desk, taking care of my emotions–and she’s doing a better job than I am. She kept me from crying my half paralyzed eye out. I know, it’s not the soggy eyeball that’s paralyzed; it’s the muscles connected to the eyelid, but  whatever, same shit. Anyway, you should know she also kept me from gauging it out like ole Oedipus there.

God/Universe, I know you know I love you but why do you do me this way sometimes? Are you trying to get rid of me? Why so soon? Why so often? I no longer shout mean, spiteful names at you. I try to eat healthy (when there’s food to do so). I try to eat even when I don’t want to, and that’s often these days. I actually prefer fruits and veggies. I finally got myself in a city-based physical therapy program, and I’m still in psychotherapy. I take my vitamin B12, my Caltrate, my psych shit and my fish oils. I rarely drink sodas. I try to eat as little processed food as I can. I’m not even taking painkillers right now! And I promised I wouldn’t get rid of myself but then you go and whack me repeatedly from behind? What in the fuckin’ fuck?

I thought we were cool man. It’s ok though. Really. I won’t resent you. And you don’t have to answer the first question, but at least tell me if you’re ridding yourself of me. If you are, do it quick. I’m not up for another slow death and resurrection. Tell Zeus to get his lightning bolt ready or something. I know it’s partly, ok mostly, my own creation. But come on! And I know you also know that I’m in pain here and I can try and negate it all I want but it just keeps tagging along. I thought I’d remind you in case you forgot.

My arm? No, that’s actually not hurting now. The recasting was done a lot better this week. Nice fella, the casting tech/nurse/whatchumacallem. And the face is slowly waking up, enough for a half-assed smirk. But this damn eye… I just… ugh. I’m seeing blurry here.

God/Universe, I do want to thank you for all of the patience you granted me with my brother this week. I’d like more of that. I had stocked up on a lot of it during the holidazzzee but I feel like I may run out soon. I have to admit though, we did a hell of great job on that video. I’m not too happy about the sound quality of the voice over in that last sequence, but fuck it. Everyone loved it! And we didn’t even have time to really polish it with finishing touches–no color correction or anything. We’re geniuses! Well, not really but you spotted me with some ideas on that one. You really did. Too bad I don’t get to see him often, and when I do, he usually just gets a hold of me to get something like get help with editing a video he desperately needs to turn in to angry clients. But I can to do the same, so no blame there. The important thing is we got it in and they were happy (better be too with all that work we put in). That’s the thing about my bro and I. When it comes to creating shit, our minds sync up. Too bad we both have that perfectionist tendency and he’s got the OCD thing going. Regardless, Universe/God, I thank you for that.

There are just a few things I wanna request though. I know you saw it coming. So if my brother asks for another editing favor, can you get him to pay me next time (granted there will be a next time)? I know, but I already asked him. I just thought maybe you’d remind him every so often when I’m not around. I don’t like doing too many reminders. It’s cool this time. I’m glad I can help. It made me feel less useless actually. But next time, just a little at least? You know my desperation.

Also, if you send me work, please have them pay too. No more freebees. Fuck that I can’t get a Social Security! Fuck feeling helpless! No more. I will work, regardless of what “the law” says! The fridge is empty and my momma, eh, I’ll write you another letter about her later. It’s not really so bad, I mean, I just need to stay busy so as not to be tempted to burrow back under the covers and stare at the faceless ceiling all day. But how? I couldn’t even add twenty and forty-eight the other day. I swear I’ll do my part about the work though. In fact, I’m watching a tutorial on how to interview a client. See! I’m watching as I type this request with one hand, well I’m not getting much our of it but… I’m going to watch it again… I’m prepping up for motivation and some concentration.

I just… I’m nervous about making this website for my dad (another free job), and I’m anxious about making it at all in life. I mean what the hell? What I even mean by that? Am I still alive? I don’t feel it. Aside from the innermost ache, it’s all still a bit numb, most days. There’s a tingle of life, yes, a little. But not today, not most of these days. You know how fuckin’ shitty this immigration situation can be. Can you grant me something for that? Anything? I don’t want to have to marry L. I don’t. This week, I saw these cool pro-bono-ish lawyers at the university and they gave me a similar prognosis as all other immigration lawyers do. So I really would hope for more encouragement if I weren’t already so vapid.

God/Universe, one more thing, can you tell the Sun to stop calling in sick? It’s getting really heavy and burdensome in this in this stifled city. No, the air is fine, more than fine, but it isn’t enough. And can you tell Karma (if it really is her) that I’ve had enough of her this month? I think she’s overstayed her visit for the year and has given me more shit than I’d like right now. I just don’t think she believes me when I say I’m sorry for any harm I’ve done on this earth and to any living being in this lifetime or any past lives–if, indeed, there were past lives.

And I promise, I won’t write you anymore sappy letters. Ok maybe I will, just not this sappy. I also promise to keep this blog free of too many lengthy or cheeky posts. Just, please help me out here. At least enough for me to focus on this tutorial? (Heehee I accidentally typed “titsoral”. Why do I want to giggle like Peter Griffin? Am I really that childish?)

Anyway, I don’t call on you much, if at all. And I don’t really think I’m useless per say–even with this temporary one-handedness I have going here–but at least, with your help, I can convince myself that I’m not.

I realize acceptance is best. Can you help me with that too? Pleeease.

Love,

PAZ

p.s. I once heard that this little earth I’m on is just another cell in your body. But I happen to know it’s just another subatomic particle full of energy, pirouetting in your endless anatomy. So I’ll understand if you don’t reply.

p.p.s. Kisses.

Penumbras

February 3, 2012

Penumbras

They are the ghosts

Of your bitter wishes.

Drawn by your insecurities.

Magnified by your frustrations.

Don’t stare at them.

If your gaze lands,

They will begin to

Crawl. Don’t follow them.

When your sorrows grow,

Floods of them will

Swarm and form a

Haze of darkness. And

Before you know it,

They will surround you.

Like thick, hungry ticks,

They will penetrate you.

Gnawing at each vein,

They will bleed you.

Don’t cultivate their need.

Because if you feed

Them and nurture them

Each night, they’ll surprise

You when you wake.

From corners and crevices,

They’ll guzzle each one

Of your uttered curses,

Your reckless, dark desires.

Attention is their sustenance.

It makes them bold.

Soon enough, they’ll chase

You down and rob

You of your peace,

Those sly, shady devils

Will have you prey.

Eat or be eaten,

Is what I say.

That’s why girl, keep

Your sight on lighter

Things.  Become the shadow

Eater, if you must.

© PAZ 2009

_____________________

This was actually an assignment for one of those creative writing classes I took in college. I don’t do well with prompts. The prompt here was to write four words per line. I found it yesterday as I was organizing some folders whilst  having a sudden urge to get really fucked up on benzos and narcos. But then I thought, “Hey, I’m going to use the end of this as a mantra for the day”. Really, I think I’m going to use it for the upcoming weeks since I haven’t had an urge like this (at least not this strong) in a very long time. And it’s a bit worrisome. I’m still feeling that urge to take something that’ll just knock me out good. I no longer have the Ambien nor money to get a refill either. But I do have some very old benzos (no strong narcos though), and then there’s some of that Hydrocodone left… See here I am contemplating the beauty of pills that give the wonderful gift of not feeling… No, I don’t want to go there. I know where that leads back to–crushing, blending, parachuting, and snorting painkillers with benzos, and any pill really.

I need to help myself curb away from the urge. I’ve never been an addict per se, not with narcos at least (and I suppose it’s a good thing I’ve never had a full, steady supply). With alcohol, maybe a little, ok a lot, but that’s another story. So admittedly, yes, I have an addictive personality–an addict’s tendencies. But I’m not half bad now. I’m not well either, but I’m not bad. I’m not. I don’t know. I feel a bit numb already, actually–momentarily dispersed into a strange depersonalized mood. Everything around me is vibrating and when I close my eyes, I can see every atom dissipate from my being. I’m outside looking in at that flesh that I call myself but isn’t really me. The flesh has no real sensation of its own. I do not feel it as my own.

God, I really need to eat me some of these impending shadows and then mercilessly turn them to the shit they really are out the other end! I’m strong. I’m smart. They think they have a hold of my mind, but I know I can outwit them.

Now here’s the oxymoron: darkness is merely an absence of light. Pure emptiness.

A week and a day ago my crooked smile disappeared. What I had left of a smile is now gone. Gone.

Poof.

It has vacated until further notice. It’s split and left no note or anything. You may be thinking that I’m speaking metaphorically when I say, “I have no smile now” or “I just can’t smile,” but no. I wish that were the case. Actually, I don’t because that would mean I would be severely depressed to the point of near catatonia again, and I definitely don’t want that. What I mean is that I’m saying this quite literally because the right side of my face is immovable, zombie-like, paralyzed. But now that I conjur metaphor, I will say that I also mean it metaphorically. After all, it’s difficult to smile inside when you lose such a basic function. It can be devastating.

On Wednesday morning of last week, just a day and two nights after arriving back in Houston, I woke up unable to move the right side of my face. The skin just hung there all soft and wobbly, like a dangling pancake. When I got up to get ready for my first therapy appointment since November, the delicate, pancake muscles on my cheek, lip, eyelid and eyebrow all slowly drooped; the nerve filaments microscopically scintillated inside.

Then, the tingling began, tiny sparks, growing stronger by the minute. That’s when I knew. I knew the facial paralysis, or rather Bell’s Palsy, had swooped in and struck me overnight.

When Bell’s Palsy strikes, it likes to do so incognito, in silence. It strikes like a ninja assassin sent to snap your seventh cranial nerve right there behind your ear. You may get the occasional warning–a spasm, soreness of the face, neck pain or a migraine perhaps–and many people do, but if and when you do, you’ll find yourself already struck before you can lift a leg for a roundhouse kick. In this case, however, you can’t even raise your brow to the mighty heavens and yell a crisp and clear “THE FUUUUUCK?!” because you can’t move your lips. Instead you sound like you have a moderate to mildly-severe retardation that causes your speech to slur and become nasally. Instead, your cry wheezes out with a lisp. It’s reduced to a faint, wispy whimper, “ph-puh-uuuck. “P”s, “M”s, “N”s, “B”s and “F”s are especially hard to enunciate .

This is the third time it has happened. The first time was in 2006…