Tonight...

Tonight I am fucked up. I can't deal. My doctors are tapering my prednisone and it is really messing with me emotionally. I can't deal with the emotional highs and lows. I want to take these raw emotions and throw them against the wall. I don't want them. I am sick of people not being able to understand what's going on with me, I'm sick of trying to explain it. I resent everybody for not understanding. And I am defiantly sick of saying I don't or can't blame people for not knowing how to react or understand. When the hell did my role in life become the "mediator" between myself and others. Why do I always feel that it's my responsibility to understand and cater to everyone else feelings and thoughts? I'm the one that fucking sick! The one who's life has been drastically shortened. How nice it must be to be able to go through life without any thought of how others might feel.

Hello? Does anybody know what it's like to have to think about your own mortality? The luxury of living in a bubble. One that says what are my plans for next year, what will I name my child should I choose to have one? All I want to do is cry. And I do believe me, but not too much because than I can't fucking breath! I am angry, sad, and scared, and there's not a damn thing I can do about it. I don't even know if these feelings are 100% mine or medication induced. I don't want to hear "hang in there, it will be ok", right now my response is go fuck yourself, I don't have the flu. I feel like nobodies on my side. Can somebody please just be angry along with me and not try to fix anything or cheer me up. Like I said, tonight I am fucked up.

Solace....

Why is it that I keep dreaming about people from my past? I'm not dreaming about past events but rather people from my past in currant times. By currant I mean that we discuss my illness, some ask how I am doing; some I'm telling what's happened for the first time, while others, nothing said at all. Every dream is different but the theme or overall feeling remains the same. It's a feeling of solace. As if somewhere within that dream exist what I most need, that feeling of comfort. Every dream has this feeling but in a reminiscing kind of way and not in a currant ongoing way. Almost as a reminder of how I used to feel; what made me happy as a human being. It was the simple things that gave me the biggest sense of completeness and comfort. It was sitting on the cliffs at Minnawoska State Park playing my flute and watching the hawks fly around the lake, climbing the lemon squeeze at Mohawk Mountain in 100 degree weather and finding a cave with snow in it. Sipping a cup of Java in silence and staring off into nowhere lost in thought. Stillness… but stillness within an active world. The ability to watch the world whiz around me and not be caught up in it. The art of simple observation, with its only betrayal being a knowing smile. It's true that I've lost this aspect of myself or rather it's been confined and caged up with a very limited view. No longer within the world observing, but rather trapped within the confines of my house and my mind, with my only outlet being my dreams. Perhaps this is why I'm having these dreams with people from my past. Like a favorite TV show whose single purpose in life is to allow the viewer to escape the stress of everyday life. The difference is that these dreams don't have plots or stories to tell of there own, they are just a series of simple unscripted interactions between myself and others. Solace within the mundane. For me, being or attaining true happiness and feeling complete in life comes down to these moments in life, the purist sense of enlightenment come from the simplest things.

Symbolic People...

Why is it that people and past events evoke emotional needs, and what am I supposed to do with this information? I feel the need to have a sense of comfort and security, a warm blanket to snuggle in and forget about life for a while. This is the role that my symbolic person represents. It's funny how someone from your past who in all reality you no longer know can be so familiar. It's not the person that matters, rather what they gave you. A warm fuzzy womb where everything is taking care of. That's what I was given. No need to think or manage life. Just heal. I need to feel that sense of innocence again. That false sense of safety that comes as a luxury to those who are healthy. I'm tired of this illness, I'm tired of dealing with it, feeling it. I want to feel normal again. But I know that will never happen. I'm different now. Will I ever be able to climb a mountain again? Will I ever be able to get through one day without my disease creeping in to remind me that it hasn't gone away? I want to be able to walk down the stairs and go outside with out the aid of others, and without my 25ft oxygen tube that I call my leash. I want to be able to breath without thinking about it. I want to be able to take a piss and not wonder how my kidneys are fairing. I want to be able to look at some one with a cold without seeing them as an instrument of death heading in my direction. I want the calendar in my computer to be full of fun things to do and not Doctors appointments and medication regiments. I'm missing something. I need support. But I need emotional support. The kind of support that comes with a hug or an arm around the shoulder with no need for words. That intimate sense knowing and understanding, simple and pure and uncluttered by speech or sympathetic looks and worries. No need for explanations. How do I get this when I am trapped in my house away from human contact? When I don't have the ability to come and go as I please, and be a part of the world.

Friends...

Its funny how different groups of friends can represent different parts of ones life. You meet so many people over the course of your life and people inevitable go their separate ways and lead their separate lives. Each existing in their own worlds apart from the ones they used to know. I see these groups of people in time periods, each existing in another life that was part of my past. I look at my life that way. As a series of past lives or chapters if you will, that dont necessarily connect with each other. Yet these people have all influenced my life dramatically and have shaped who I am today. How many chapters or lives have I led? And how are all of these people that I call friends so different from each other? I try to picture all of the people Ive ever known put together in one room and I have to laugh, it would be like a bowl of Skittles mixed with M&Ms. A bizarre combo that may look interesting but you might want to separate them before sampling. Everyone in your life teaches you something to carry with you in your next life. And life does go in a circle. My friends are proof of this. Connecting with long lost friends has been amazing, high school friends remind us of how stupid we really were and they allow us to see how far weve come. Collage friends remind us that we used to have a brain and how we used to want to explore new ideas with vigor. Adult friends, who complain about the price of gas, bills, and bosses, give us our sense of purpose in life and remind us of things we would rather be doing with our lives. I used to say when I was younger that I am the sum of all my friends. I never understood what I was saying, but now Im beginning to realize just how true that statement is, and I am thankful to have had so many different kinds of people influence my life.

The Powers That Be..

Cant sleep do to more bad news on my health. Its becoming overwhelming. SO much is going through my head. I think my brain needs a serious vacation! Some people turn to spirituality when they become seriously ill. They become full of faith. Start believing in God or whoever. They pray, or ask why me. As if an illness is a direct consequence to doing something bad. Is the rest of the question of why me really mean ; and not somebody else? It seems to me that the more ill I become the less I am preoccupied with my spirituality. So many things that Ive believed are changing. Like if your out of balance you can become ill or your life is in disarray. The truth is I feel more in balance then I ever have? And more at peace with my self? Yet my body is trying to kill it self? I found myself saying to The powers that be, what the fuck? Not only do I get a rare disease, but I get an even rarer lung disease on top of it? Im so rare a case that Im the only person in the world to have this combo, will become a lab rat, and am being written about in medical journals. I think the Gods or whoever and what ever you believe in have joined the times and discovered voice mail! They just havent figured out how to answer it yet. Or Im truly learning that the powers that be really only exist inside ones self, and that everything else is just our minds attempt at trying to conceptualize this feeling into words for others to hear. Strength comes from within, encouragement comes from others. Both are needed. The Gods didnt save my but in the hospital, my doctors and a primal need to survive did. Sheer will and determination on my part did. The truth is I never once thought about my spirituality. Im not questioning spirituality or the concept of a higher power Im just questioning where it actually comes from?

Hospital Comedy...

Sanity? How long can you hold on to it in the hospital? How many licks does it take to lose your mind, and how do you know when youve started to lose it.....

Not only do start watching Jerry Springer, you enjoy it.

You find infomercials informing and entertaining.

You sleep with your arm off the side of the bed so the vampires who draw your blood dont wake you up.

You know the hospital menu by heart, and start looking forward to sandwich day.

You start hording condiments, bandages, and toiletries in an effort to obtain a survival kit because you will inevitably be missing these items or not get them at all.

You start using your call button as a source of entertainment.

You start looking forward to tests because it means you get to leave your room for a while.

And finally, you know where all the EXIT signs are located!

However I did manage to keep my self busy, my brother brought me in a sketch book so I could draw, and if your interested Ive posted them on my profile.

Not Agian!

Well, Hate to always sound like Everything I have to say is negative, but it's realy not. I think that writing about my wegener's experance is helping me to understand some of the less desirable things in life. It doesn't take away the fear and worry but it helps me to understand life and the people in it better.
I've been in the hospitail for the past 2 week because of lung complecations. Breathing has become an issue. And last time I checked your lungs were important for survival. Well I just found out that on monday I go into surgery to hopefuly figure out the cause and fix the prolbem. I get to come out of the surgery with yet again more chest tubes shoved into me. The surgen says to me that the chest tube is no big deal! I looked at him and asked him if he was high! I've had 3 of them already and it's not like on the tv show "ER". They are painful! They had to tie me down for the last one because I kept kicking everybody. It's amazing how your body will try to defend itself with or without your consent. You have no real control, your body starts making all the descions instead of your mind. It's a survial tool, something almost primative takes over and you have no choice. I think it's the closest thing we as humans can come to knowing what it would be like to be a wild animal, and not a human. Humans have for the most part lost that wild instinctive side and replaced it with reason and logic. I know that I have to have the surgery, and that it will benifit me in the long run , but that wild side of me wants to run.

Violence, Blood and Brains????

Ok, I know I have a lot of crap to deal with. So, it stands to reason that my dreams maybe a little odd. But what is up with the intense imagery. My dreams have turned either violent, or down right gross. In one dream my mother was beating me with a pain of glass, but the glass didnt hurt me, instead it would shatter on top of my mother cutting her up. All I knew in the dream is that the glass was called truth. I was begging her to stop because she was the one getting hurt and I was OK. It was like she was a blind crazy woman trying desperately to kill or fend off an intruder. It was a short dream, but extremely intense. The imagery that stands out the most is that pain of glass. I couldnt get over the fact that the glass was truth. Not a representation of truth, or a symbol of it, but the actual truth. The plain clear truth! Whatever that is.

The next dream: I was standing in the bathroom looking in the mirror and talking to some strange person that exists for no real reason other than to take up space, and my ear started to bleed. At first I thought I must have cut myself, no bid deal. But soon the blood was flowing out of my ear, just one ear mind you? I looked closer into the mirror. Looking closely at my ear I noticed that there was also blood on my scalp? I touched my head and it was squishy, like a soap soaked sponge. Every time I touched my scalp blood would ooze out of it. I was perplexed; I couldnt understand what was happening. Youd think I would be screaming and freaked out at the fact that my sponge like head was oozing blood, but I wasnt. I just stood there staring at it. I remember asking my self in the dream; Now what the hell does this mean? I decided to go to the hospital to find out. They would be able to tell me why I was dreaming this. (I was aware that I was dreaming) The doctors knew what was going on, and so did my family. Everybody knew what my bleeding brain was trying to say but me. And so exhausted I fell asleep, (in the dream) never figuring out the message.

Cockroaches and Baby Birds

We all have odd dreams. Some of them down right weird and screwed up. But somewhere along the line they are supposed to make sense. A sort of subconscious figuring out of what we cant seem to do when we are awake. Or perhaps we are unwilling to figure these things out in our waking lives. There are so many levels of understanding and realizations that it stands to reason that there should be many different ways of figuring things out. This brings me to my very odd dream....
Looking up towards the ceiling of my bed room there hung a birds nest, right in the middle of the room. Above the nest was a light. It was more like a light box recessed into the ceiling. However, this seemed normal to me and as if it has always been there. It was a zebra finch nest. The kind of finches you see at every pet store. I remember that I would look up and check it everyday. Were there babies in the nest or just the adults? There were always around 5 or 6 birds hanging around. (Zebra Finches are community birds and never seen in just pairs). So I would check out the nest and then carry out my day. No big deal. Then one day, my mother walked into the room and started yelling for me. I came in wondering what all the fuss was about. She looked up. So did I. What I saw was horrifying. The light had come undone from the ceiling on one end and cockroaches were pouring out of the light box. Looking down at the ground I saw the adult zebra finches. Some were dead and kind of took on the form of the roaches. Others were not dead and were hopping around on the floor. I bent down to pick up the birds, but they seemed to vanish. Looking in the nest I saw baby birds, but the roaches were devouring them and they were dead. They never had a chance. My mother fixed the light and tried to get rid of all the roaches, but I knew they were still there. And that the nest was empty and abandoned.
We may look at cockroaches as evil, disgusting creatures that the world would be better off without. But when you think about it, roaches are one of the ultimate survivors on this planet. A cockroach can survive for two weeks by feeding on a human finger print left on a counter. I find that pretty damn amazing. Kind of gross, but amazing all the same. So what does all this mean? Well for those of you who dont know. One of the medicines that I take to keep me alive is Chemo. I take it everyday, twice a day. Because of this I can no longer have children. Or baby birds so to speak. The roaches, (chemo) have ruined that ability. Feeding on life the roaches allow me to live. As the Chemo destroys my body over time, transforming birds into roaches, my life is extended. My body has become a battle ground for survival in which I feel like a spectator.

10 Years......

10 years....
What does that amount to in life? How do we define time? Is it the quality or the quantity of time that matters? It should be both. But what if thats not an option? How do you plan for those ten years? What if those ten years are more like five? Or twenty? Why does time seem to have its own speed? One day moving extremely fast, while an hour can last an eternity? What if all you know is that time will be cut short?

All you hear is the ticking of a clock.....
Tick, tick...
One month,
Tick, tick,
Nine months
Tick,Tick
Nine Years

Where are the people you care about? How many have you lost touch with? Where will they be in ten years? How many sunsets have you let go by unnoticed? How many seasons have you complained about the weather? Its too hot, its too cold. How many things have you left for another day figuring....

Theres always time?
Now, what if you found out that the average lifespan for someone like you was only ten years and already Nine months have flown by?

Support

How do we know how to support people when they need it? Some see being supportive as making light of the situation, others think that by ignoring the situation it will go away. Some become overtly supportive. Everybody tries to do what they think is the right thing to do. Unfortunately the person who needs the support winds up feeling as if they have to support all the other people through their worry. Its exhausting. People tell me that I have such a positive attitude and that I should keep my spirits up. Part of the reason I have this positive attitude is to keep everyone else from being upset. When I was in the hospital I remember thinking that, wow this has to be harder on everyone else than it is on me. All I have to do is try to survive. I know what the pain feels like, and what the fear feels like, I have a basis of understanding. They all have to imagine what its like to have 3 chest tubes shoved into your body without the aid of anesthetics. Wonder what it must be like to be me. Worry that I wont be around. Me, if Im no longer around well thats it. Theres nothing left to contemplate. Im tired of supporting the people trying to support me. I dont know how people should support me. To not say anything makes me feel unacknowledged, to make light of the situation makes me feel misunderstood, to take it to a trama drama level makes me feel like I have to make light of the situation to calm them down. So I remain up beat and positive, for everyone elses benefit. Part of me wants to feel upset, worried, and not so positive. Im tired of being strong. I know that this is normal, and I know that my positive attitude does help keep me healthier. I just dont know how long I can hold on it, and I feel like if I stop supporting the people who are trying to support me that Ill be lost, and once that happens its all over. Nothing left to contemplate. This scares me because the more bad news I get the harder it is to not fall prey to my fears. How many times can you stare death in the face and tell it to go to hell?