Musings of an Artistic, Short-Tempered Goth

Three months. Beaten, battered, and broken, here I still stand.

God only knows why.

June 30^th was the day it happened. I’ll never forget it. It started out plainly enough. I woke up on my stomach, bare naked under the sheets with Rick snoring beside me. I stretched, feeling the cool crisp air of the 75-degree room at eleven in the morning and sighed, thinking, "It’s so nice to just stretch and be relaxed."

It would be the last time I actually felt like myself.

I did my therapy, all the while working on another of my drawings. I had almost completed it when my last aerosol ran out. Oh well. I cleaned the equipment, and took a nice warm shower. Dried off, hung up the towel...

...and then the right side of my chest no longer existed.

I couldn’t breathe, could barely move, couldn’t stop coughing. I struggled to the counter and looked in the sink with wide, fearful eyes. What was this? I had an idea, but I prayed it wasn’t what I thought. Perhaps it was a passing fit. I would be fine...right? No, I wouldn’t. Couldn’t breathe. Needed help. I called for Rick with whatever breath I still had. No answer. I caught a second wind and tried twice more.

No response.

I knew I couldn’t wait any longer. I hobbled to the bedroom door, still naked and hair dripping wet, and called one last time. Finally he responded. Gasping, I told him to call my mother. Now. Unable to stand, I forced my body back into the bathroom and sat on the toilet, desperate to catch more air. I coughed again and again, hacking a wonderful orange blob of mucus onto the floor because I couldn’t control it.

Two minutes later, my mother was there shouting, "Rick, call 911!" I looked up, not entirely in my own mind but I knew something was horribly wrong. My mother was pale as she dressed me in my underwear and T-Shirt, and that’s when I saw myself in the mirror for the first time.

My fingernails and lips were sky blue.

This was it. I knew it. I turned to her and asked, "Am I going to die?"

Her only mission at that time was to get me to the couch with Rick’s help. I sat there, thinking that it would only be a matter of time before I would pass out. No matter how hard I tried, the air wouldn’t reach me. Five minutes later (though to me, it was only an instant), I was surrounded by EMT’s, all of them with a look of dread on their faces. I saw my oxygen saturation on their portable machine. Fifty-eight percent. It was amazing that I was still conscious. That’s when the EMT said, "We need to go, right now!"

I remember being hefted downstairs by three of them, the oxygen mask strapped to me, being loaded into the ambulance as a second black Nissan Armada pulled up to the apartment with Kelly and my father inside. And then we were off. I couldn’t lie down, and I was so preoccupied with staying alive that I didn’t even feel the I.V. they placed in my hand. I answered their questions as best I could, but I wasn’t really all there. Most of my brain was focused on just one thing.

C.F. won. It caught me off guard. This is the end. Isn’t the sky beautiful? And the trees...god, they were so green. The world was really beautiful. I’d be sad to leave it like that.

Next thing I understood was that I was lying on a hospital gurney in the E.R., surrounded by nurses taking blood, accessing my port, and taking x-rays. My mother was there on my right, holding my hand as the doctor said, "Your right lung has collapsed eighty percent. We need to put in a chest tube."

Chest tube? You mean the one thing I’ve dreaded ever since I knew about them? I started to tear up. I didn’t want this. But it seemed I had no choice. I remember my mother whispering, "This isn’t your time!" Then they gave me the Atavan, the Valium, and the Morphine. I didn’t know anything after that.

When I came to, I had that damn tube in me, though I didn’t feel it. They’d ended up cutting me twice, unable to get the first try. Rick was beside me, and I asked, "Will you still love me with holes in me?" He smiled and said yes. Mom was still beside me, and with that, I passed out.

I’m not sure how much time passed before I went in for my first surgery. My lung wouldn’t stay up on its own. There was a severe leak. One of the cysts on my lung had burst, causing the spontaneous collapse, and it was not healing itself. I was at UCH, not my normal hospital, and under the care of one Dr. Menezes, who told me that they were going to have to go in and rub the lung raw, hoping that the scar tissue left would be enough to stick the lung back to the chest wall.

Lo, I survived the surgery and was able to go home shortly after. For about thirty-six hours. Then I felt a nasty pain in my right side again. And I was terrified of it. We drove to the E.R. only to learn that my left lung had collapsed, causing a midline shift (the collapsed lung put pressure on my heart, which in turn put pressure on my right lung). Yay. Another chest tube. This time, however, they placed it during yet another surgery (same one). I thought it would be the last time.

It wasn’t.

About a week later, still in the hospital, my right lung decided to collapse again. Dr. Menezes had my mother sign a DNR order in my stead, as I couldn’t breathe and was unable to even sit upright. It happened slowly this time, and I found myself doubling over more and more and more just to keep breathing. I was losing consciousness, and oxygen. Dr. Menezes and Dr. Brownleewee (my surgeon) placed another chest tube on my right at bedside as they pumped me full of Dilodid. I remember Dr. Menezes holding my hand, comforting me as I slipped back into an all-too-familiar La-La-Land.

At that point, there were only two options; die, or have a more aggressive version of the first surgery redone. At this point, I was seriously considering the former just for the mere fact that I didn’t want to be trapped in a hospital anymore, never knowing if this was going to stop or if nature was telling me to give up.

But I didn’t. I went ahead with the surgery. And I was able to come home again.

For a week. One, single week. Then the left lung decided it wanted more attention, too.

I survived another surgery...barely. This time they had to slice me open with a six-inch incision across my left side, spreading my ribs to get in there with an orthopedic rasp. By now, my lungs were all but destroyed. I was beaten and tired, with seven scars on my right side alone. Thin, drugged to stop the pain and calling for more Dilodid every two hours, exhausted with all of it, I wanted to give up. Heartbroken and defeated, my family and I called hospice and decided that enough was enough. I went home on a Dilodid drip of 2mg an hour, and a 1mg bolus if I needed it. I was prepared to die.

Finally, however, on three liters of oxygen constantly and stuck in a wheelchair from lack of breath and ability to walk (by now I’d dropped to 105 lbs.), I made it in to see my C.F. doctor, Dr. Rolfe, and his transplant team. He gave me a six-month prognosis without transplant. I couldn’t have that. I’m only 21. If I had made it to the ripe old age of 30, maybe I would be alright with dying right now. But I’m not, not this young. So, reluctantly, I agreed to be evaluated for a bilateral lung transplant.

God help me.

Test after test after test. I’d read about it long ago. They test every organ, every fiber to make sure you’re "worthy" and healthy enough. It was painstaking, without going into detail after detail. But I made it, and I passed. I am officially on the list for lung transplantation. But in doing so, I had to come off the Dilodid...

I know what heroine addicts feel now when they try to stop. Its almost impossible. I was crawling in my own skin, sweating all the time, going insane. I would have done anything for another fix of that sweet drug, the only drug I’ve ever had that calmed me and numbed me to nearly everything. I wanted it so badly that I had to be put on two other pain medications to compensate so I wouldn’t have to go back into the hospital for drug rehab.

That’s what 60 days on Dilodid will do to you. Never again.

I believe I was home for two weeks that time before my left lung collapsed again, 50 percent. This time, however, there was only shortness of breath as a symptom. My mom had time to drive me to my proper hospital, and Dr. Rolfe was able to place two very small chest tubes. Luckily, the lung inflated on its own, and is still holding (knock on wood). It ended up being my shortest hospital stay at only ten days. I’m two weeks out from that now, and back in my apartment. Which, by the way, while I was in the hospital for 60 days, my boyfriend and mother managed to move our entire apartment to the first floor so I wouldn’t have to contend with stairs. And, at the same time, my mother was there with me nearly every single day and night, suffering and laughing right along with me. I have never been so close to her as I am now. Strange, isn’t it? She’s a remarkable woman. If not for her, I would not have survived.

So now, here I still wait on a transplant call. And I am not who I was. Not anymore.

Its true that having a near-death experiences changes you, scars you in more ways than one. For the longest time, I couldn’t watch a horror movie. Me, Queen of Death, couldn’t stand to see blood and gore. I cringed, cried, had nightmares, including one that involved my chest tubes gushing blood all over the floor. "Pan’s Labyrinth" gave me chills. I was no longer Miss Goth, but Miss Paranoid.

That eventually faded, but there are some things that have not. My new-found will to live, for one. My fear and anger for another. Anger at myself, which unfortunately gets projected outwards sometimes. I was supposed to be prepared for this. I’ve known my life would come to this since I was a child. So why, then, does it still affect me so? Its everyone’s fate to die, especially a C.F.er. And dying young is par for the course. So why do I cry every night? Why am I upset about being on oxygen constantly, strapped to a tank permanently? Why am I upset about being so weak and frail, about my sides aching all the time, about struggling to breathe and having to make it a conscious effort?

"This was always coming, you idiot. You knew it was always coming!!"

All I can do now is wait for someone 5' 3/4" with O+ blood and healthy lungs to die so that I can continue to live for another five years, if I’m lucky enough. I can’t do much of anything for myself anymore, though it is better than when I was still hospitalized. I’m trapped, it seems, waiting to either go through a life-changing, dangerous surgery or die by the phone. And with each day that passes, my hope for that call fades. I have always pictured myself dying young, and alone. It’s a haunting image that I’ve never been able to shake. And while I keep trying to force myself to be positive, that feeling haunts me still.

I really don’t know if I can survive this. Mentally or physically. My body has been through so much, and it was frail to begin with. Though, on the other hand, there were three separate times I should have died. Yet I’m still here, typing this out. How? I have no clue. Its unfathomable to me.

Is there some fight left in me still? I hope so. I want to believe that I will make this, but I want to be prepared if I don’t. This is the biggest, most catastrophic thing I have ever had to undertake. Can I do it? Is that evil, sadistic, ass-kicking persona still in me somewhere?

I hope. I really, really hope. And I hope it takes over soon. I hope it hardens my heart to all of this so that I can survive, as it has done for me time and time before.

Come on, inner demon. Where are you when I need you most?

P.S.  If you aren't terribly squimish, here are the photos of my first chest tube.  Lovely, no?

I'll start out honestly.  I am a white female.  Caucasian, half Scottish and half Cicilian by heritage.  I am not racist.  I have black friends who are very well spoken, educated, and intelligent.  My own lover is part Korean.  There is a couple living downstairs from me who are of Spanish descent (I don't know if they are Cuban, Mexican, or otherwise) who say "Hi" and are more polite than my other three white neighbors.

 

I am not a racist.  Let that point be clear.

 

There was a story on the news this evening.  A group of black teenagers have been banned from Disney property for life due to a no-tolerance policy on gang activity.  Turns out that this month, dozens of blacks and hispanics have been given the same treatment by the Disney company, who explained that there has been an increased level of gang activity on the property of "Downtown Disney".  This is understandable, as Disney would lose a lot of business and end up as just another Ybor City (another town in Tampa plagued by gang activity and violence).

 

Then they showed a clip of these so-called "victims".  A group of four black teens who couldn't speak English "real good", with pants hanging off their ass and belts hanging loose in that rediculous fashion that makes it look like they're compensating for a small penis.  Talking about how Disney was "targeting blacks" and that "they was so scurd! (yes, scurd, not 'scared')".  Yes, Disney is now racist because they wanted gang activity to stop.  And these kids looked like real A+, upstanding members of society (that was sarcasm, folks).

 

Now, let me ask you...how many all-white gangs have you seen?  Almost none, thank you.  Look up the statistics, you morons.  My own high school was a prime example!!  There were no white gangs.  White kids trying to be ghetto, yes.  But not white gangs.  And since my graduation, these "colored" gangs have only gotten worse, causing fights, defacing property, etc.  MOST STREET GANGS ARE MADE UP OF BLACKS AND HISPANICS, DUMBASSES!!!

 

On top of which, the news channel that reported this story pulled the records of arrests and bannings from Disney property all the way back to '06.  Almost seven times as many white people were banned compared to blacks, until these recent arrests.  How the hell, statistically, can you claim racism when, statistically, the blacks and hispanics cause the most problems?!  You wanna end racism?  Tell your own "people" to stop giving themselves a bad reputation!!  Tell Jessie Jackson and Al Sharpton to stop preaching against every white person (because believe it or not, you can be racist against whites, too, you assholes) and start telling their own race to stop making songs about gangs and rapings and murders!!  What a concept, 'eh?!

 

Racisim is a convienient excuse for getting yourself out of trouble if you're "colored", isn't it?  You P.C. bastards abusing the system need to grow up.

 

The prosecution rests, ladies and gentlemen.  Have a peachy day.

I've discoved recently through many different sources that my personality is really damn complicated.  From people online, from responses to my artwork, from my family, from my lover, from people I fucking can't stand...  All of these aspects of my life have shown my many layers.  I can be a lover and a fighter.  I can be a housewife, an intellectual, and a gamer.  I can be artistic, I can be lazy.  I know little about many subjects but much about few subjects.  I can be a spiritual person, and I can be a non-believer.  I can be sweet and innocent, or ravenous and devilish.  I can be sympathetic, I can be articulate, and I can be a philosopher.  And last but not least, I can be either a caring friend or a downright nasty, PMS-ing, homicidal bitch.

 

A few of those aspects I've tried to change.  I've tried being passive.  I've tried letting shit roll off my shoulders instead of holding a grudge and gunning for the bastard who pissed me off.  Never works.  My personality is too fiery for that.

 

Lately, I've seen all these sides of myself, and you know what?  I love 'em all.  I love being a sweet and beautiful wife just as much as I love threatening to kill a kid who won't shut the fuck up in a restaurant.  I love being sentimental, and I love being evil.  All at the same time.

 

There are some parts I don't like.  My CF, for example, and how much stress it causes my family.  I hate knowing that I can't have a job, and that I need to be cared for at certain points.  But you know what?  Overall, there isn't much I would change.  And I think there are very few people who can say that.  Not everyone agrees with me and my methods, and that's fine.  They don't have to.  But I'm not going to change myself for anyone or anything.

 

...I have no idea where all that came from, but I felt like letting my fingers take a walk across the keyboard...  May you all be at peace with yourselves the way I am.

 

Ciao, darlings...

WARNING:  This rant of mine is going to involve religion, and its going to be long and deep.  Ahem...

 

My inspiration for this little tirade has been hanging around in my head for quite a while now.  But a few things have forced me to bring it up.  First of which, a few people on the CF.Com forum have this idiotic fear of death.  Why do I say idiotic?  Because when you have a terminal illness, you either except death or you live in constant fear of it.  Or, you can ignore it completely and have it blindside you like an eighteen-wheeler.  Neither of which are very smart choices.  It pisses me off when most people claim to be Christian, and want to meet Jesus, yet fear the end.  It makes little sense to me.

 

The second reason I bring up this topic is because of the release of the "Devil May Cry" anime (SQUEEE!!!).  Demons and devils and the occult are my specialty, therefore I love Dante.  Which forced me to do a fan art.  Which forced me to think about Hell.

 

The third reason?  I saw "The Exorcism of Emily Rose" for the third time the other night.  Great movie, and it brings up all the points I'm about to bring up now...

 

Why the fuck do people claim to believe so strongly in God and Heaven, even claiming that God has come to them and talked to them, yet when faced with what could be considered evidence of the Devil, they scoff and chalk it up to said afflicted person being "crazed" and insane?

 

There are two forces in this world; good, and evil.  They can be blurred sometimes into the famous "grey area", but they do exist seperately.  THEY ARE BOTH REAL!  You don't see everyone who claims to have heard God's voice being Baker Act'ed, do you?  If so, we need a helluva lot more assylums in this country and around the world!  But when people claim to hear malevolent voices or even become possessed, they should be on medication.  Makes no damn sense.  You believe in one insane notion but not the other?  Can someone say, "BIG DUMBASS HYPOCRIT"!?

 

Here I'll go into why I can say this, and tell my own experiences with the spiritual world;

 

I believe in the Devil, wholeheartedly.  Though I wouldn't call him the Devil in the sense that the Christians would.  I know he exists.  There is someone (or more than one being) watching over this world.  I've felt forces that I can't explain.  Dark, but benevolent, forces.  I've seen ghosts and Shadow People.  I've felt cold chills up my spine in the middle of the night.  There was even one point in my life where I  truly believe I've had a night visitor.  A guardian, if you will, but no angel.  Of the inhuman kind.  I would dream about him, I would feel him when I awoke in the middle of the night...and I have heard voices in my sleep, only to wake and find no one there.  You can say that they were tricks played on my mind if you like, even though they were consecutive incidents...but in that case, isn't God one big hallucination, too, then?

 

Hell, I've even partaken of human blood.  Safely of course, and with someone I trust explicitly.  Most people think that's a bunch of bullshit, but don't knock it 'till you've tried it!  When I was a practicing vampire, I went for nine whole months without becoming ill!  NINE MONTHS, when I was used to I.V.'s every three!  There is a spiritual power in blood, of that I have no doubt.  A moderate CF'er like myself going that long without drugs is a miracle.  Too coincidental, I do believe...  And before you laugh at me, probably more than 50 percent of you reading this blog are Christian.  "The blood is the life," no?  I rest my case, so get off my ass.  Even YOUR people believe there is power in blood, and the blood of your Lord.  Unless, of course, you're the 90%-type Christian who only goes through the motions so you might save yourself from Hell in the event it does really exist.

 

If you are one of those, know that you make me sick...

 

On the flipside, I've been to church.  I've walked into the halls of the National Cathedral in D.C. (and no, I didn't burn, you stupid anti-vampire bastards).  I cried silently as I looked up at those windows, spilling light onto the floors of that massve building.  I felt something there, too.  The same thing I've always felt.  That same presence that I feel around me whenever I do anything spiritual.

 

As to why I don't believe its God specifically?  Because I think the Bible is full of shit in a literal sense.  Its stories are meant to teach human beings to be better people, not to be taken the way it has been in the literal sense.  Besides, the damn thing's been rewritten so many times to suit people in power, even if I were a Christian I wouldn't trust it.  Therefore, the God as described in the Bible is a false one, in my opinion.  The Bible (and the Christian religion as a whole) was created as a way to control the weak-minded.  If you were a human being living in the time before Christ, when everyone was stupid as to how the world actually worked, and some jerkoff came up to you and said, "Hey, if you don't behave exactly like this, you're going to be thrown into a pit of fire for eternity by a big ugly dude with three heads," wouldn't you listen?  People have supposedly gotten smarter since then.  HAHAHAHAHAA!!!!  Right!!  Apparently not!

 

That aside, I belive there is more than one "breed" of demon/angel/god/devil in the "world".  I believe they're free-roaming and behave as they wish.  If they choose to be evil, they torment people.  If not, they help and protect.  But I don't define them as "demons" and "angels".  Thought I think "demon" is a cooler word ^_^  In short, I believe strongly that something is out there.  A benevolent and powerful force, that is not God or the Devil.  But it is always there...

 

Anyway, all that was only to prove that I have felt spiritual forces and I know of what I speak.  Also to clarify my opnions.  Back to hypocracy...

 

There is no true religion anymore.  The church is corrupted, people take the Bible literally (real geniuses, I'll tell ya), and they only believe the parts they want to believe.  Well, lovelies, let me be the first to tell you that there are dark forces in the world, and most likely the one after.  You can ignore them and choose only to believe in the light if you want, but to do that is to be a fool.  DON'T FEAR WHAT YOU DON'T UNDERSTAND!!

 

Oh, and on the rare chance that the Christian Hell really does exist, (and I will most certainly end up there if it does), know that I'll be the hot red-head standing next to Lucifer with the flaming whip, ready to kick ass for eternity.

 

In all seriousness, before I take my leave, I offer to you this quote;

“I like your Christ, I do not like your Christians. Your Christians are so unlike your Christ.” ---  Mahatma Gandhi

 

Well said, Gandhi.  Well said.

 

 

 

 

 

 

P.S.  You'll have noticed that I've customized my space a bit.  And yes, the artwork used for the background is mine.  I've also added a guestbook, so give me a shout when you have a second!