Walking Around with a Hole in My Soul

I'm thinking about my life today as I sit here on a hospital bed. So much has changed and yet in a sense everything remains the same. I'm missing desire in my life. I shouldn't have this problem having been through what I've been through. You think I would be full of life and have a renewed sense of wonder and hope, but I seem to be missing this? It's as if life has just continued and I'm wearing shoes that are just more worn out than before. Walking around with a hole in my sole and the knowledge to change, but not the desire to? I don't understand. It's like I'm stuck. Or maybe I'm scared that If I try to reclaim my life, disaster will strike me down once again. Last year I got to the point of wanting to do something with my life, I could finally conceive an idea of a future, than I relapsed and got another rare disease. A part of me thinks that if I can remain still and go unnoticed than nothing else bad can happen to me. Like a forgotten about shoe that's sits in the back of the closet and goes unseen for years, preserved in a thick layer of dust……… A mummy from a life already spent. I don't like this aspect of my self but it is the truth. It's as if I'm afraid to make a commitment to myself and to life. …..I can't read the fine print so I don't want to sign up. Sometimes I dare to dream about things I want or would like to do. It's hard because I feel like it will be ripped away from me. But at the same time what is the point of all of this if I don't move forward? By not moving forward aren't I achieving what I don't want? I guess I don't know how to blend my life together with who I have now become. I feel like I should be able to get to the point that I can live my life like I did before. Independent and unencumbered by complications unless they were by my choosing. I don't know how to take this broken body and turn it into life. I feel like I've been dumped in the middle of the desert with no directions.

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.