I kind of needed to finish our conversation so I'll write it and share it with you on Thurs. I know I minimize things and I laugh about them, so some may think that they don't seem serious, but it's my way of getting through it. I wouldn't be able to cope otherwise. You asked if there was something safe about the hospital being taken care of. I wold say that when I was in my teen years and being abused, hospitals were safe places. Though some bad things did happen in hospitals, in general, they were safe places. There's something different about having your parents or family hurt you vs. other people. It's more tolerable when others hurt you. And for the most part I was safe in hospitals. So when things got bad, I found a way to go to the hospital - usually psych. But again that was another way I survived. That was before I had medical poblems. At this point, hospitals, doctors, they terrify me. Hospitals, doctors, I equate them with invasive procedures and uncomforrtable tests.
No one understands what I go through and what i live with every day - not you, not Barbara, not my doctors, not my friends, not my fammily. Yet how can you when its so foreign. I live in another world. In that I am totally, completely, and utterly alone. People who haven't lived through what I do can't even possibly imagine or fathum what I live with. My life is an endless stream of doctors visits and hospitalizations. Each time I go into the hospital I might not come out. For me dying is a real thing. I could go to sleep and not wake up - and that's if I'm lucky. There have been many times in the past year that I have wondered if this was it. Was this the last day I would see? What wold it be like to die? Was this the last time I'd see my family? There were several times last year when I lived with my family that my mom had to rush me to the hospital. And while driving I could see the fear in her eyes, hoping that she'd make it to the ER and that I wouldn't stop breathingh on the way. She'd try to hide it, but she'd be crying, praying that I didn't die. And I'd say I'm sorry. Sorry for putting her through all this.
I wonder sometimes if she regrets having me. I'm her first born, but I spent years in hospitals. I got my life together and now this. It's almost like for what? Why? Why do I have to deal with so much? My mom says there's a reason we go through things and God must have great plans for me. But sometimes I get tired of being stong. I just want to live noramlly.
People act like going to the hospital is no big deal, maybe because I try not to make it a big deal. But it is. I mean I'm on machines which are breathing for me and keeping me alive. Without them I would be dead. You can read people. Have you ever riden in an ambulance with the sirens blaring and the EMTs are hoping they can get you to the hospital fast enough, or doctors in the ER know that they might lost you. You see fear in their faces. And at that point, you're alone.
When I say I can't beathe, it's not just "oh, I can't breathe." It's real. Imagine holding your breath forever and though you know you need to get oxygen and breathe, you can't. At first you become scared. Your lips, fingers, and toes tingle from lack of oxygen. Then you become lethargic and vey sleepy. Things stop to matter. Your entire focus becomes on taking that next breath. It's like runnning a marathon. Your muscle hurt. You're tired. And you know that as much as you hate the tubes and machines, if they don't put them in you, you are going to die.
And what is death? Despite religion and everything else - you cease to exist as you know it, for life is a conscious existance. And experiences are conscious. Death is not conscious. You don't hear, you don't feel, you don't see. You're dead. That's it.
Most people don't think about death, but I have to. For me it's a reality. In the past year I've had to face it. The next tiime I go into the hospital could be my last. And what will people think when I don't return to school or to my apartment. I imagine they will think at they didn't think it was that serious, but now I'm gone. They'll have to pack up my stuff. And then they'll move on. They may remember me, but I'll cease to exist for them too.
You know my quality of life sucks. I can't do what others can. I can't run. I can't ride a bike. These are all things I used to be able to do. I'm fat from medication which has horrible side effects, but is the only thing keeping me alive. And there's not a God dammed thing I can do about it. I once was thin and now I can't be. I know people judge me. I imagine when they see me they think how fat I am. Why doesn't she lose weight? Why doesn't she exercies? I'll bet it's because she's so fat that she has problems breathing and needs oxygen. And there's nothing I can do. I want to meet people and have meaningful relationships. I want a boyfriend. But I know that I'm not attractive like this. I know no one wants someone who is on oxygen. A lot of people don't even want to be my friend because I'm different. When I do meet people, I do it by sacraficing - not wearing the oxygen - hoping that if they meet me without it, they'll give me a chance. And once they know me, oxygen or not, they will still like me. But I can't do what others my age do. If peopole go to the beach or away together for the weekend, I can't just go. Everything has to be planned. I have to get a tank of oxygen to carry. It has to be delivered. Its not just like this little travel tank. This only lasts 6 hours.
And I know I stand out. I'm different. And I don't want to be. Some poeple stare. Some peopole are scared. Some people don't want anything to do with me - like I'm a freak. I can't be just a normal person. I mean once a month I have to got Dana Farber where I'm surrounded by cancer patients, to sit for hours and get treatment. And I'll have to do this the rest of my life. I try to stay upbeat. I try to pretend it doesn't bothe me, but it does of course. I mean I've even though about if I had one last day on earth what I'd say, what i'd do. I have to be thankful for every morning I see the sun rise and each night I see the sun set. I live with the fact that I have so much potential and it could mean nothing. I want ot make a difference, but I can't if I'm dead. And I have no control over it.
For most of last year I was scared of dying. I would cry. I'd become frustrated. Why did I have to deal with this anyway? But then a couple months ago, I died but came back. When you get intubated, you're a code. But this time I died. I was a spirit and approaching whatever is out there. And then I was pushed back and told it wasn't my time yet. I wasn't scared anymore. I was calm. I knew no matter what things were going to be okay - my family, my friends - things would be okay. I'm not scared anymore. I know it will happen at some point. I can't avoid it. And when it comes, it will be okay. It's not painful to die - actually it's peaceful. Until then I'm going to enjoy life and make the most of it. You realize that once you're dead, life doesn't really matter. Life is for the living, so enjoy it while you can.
There was a time that I thought things would get better and I'd retun to doing things and living as I had before. But I stopped believing in miracles and accepted that I was lucky to be alive at all. In the past year I've had to think about what my wishes are and how much I'm willing to take, what quality of life I'm williing to sacrafice, and when do I say pull the plug. Some days I can accept it, and others I can't. It's hard, but it's what I've been given and I don't really have a choice.
Trauma-wise, hospitals are the worst possible thing. I dissociate through the entire thing. I mean catheters and breathing tubes. Nothing like recreating trauma, reminding you of things you don't want to relive. There's nothing more violating. And you have no control.
The first time I got intubated at 17 was when my ED got out of control and the g-tube was put in. I stopped eating and drinking completely because the tube reminded me of other things going down my throat. Now everytime I end up in the hospital I have to be careful not to go down that same road. Each time its like the abuse happening all over again. And I'm racked by the nightterrors and flashbacks. I always wake up from being intubated crying, scared, and alone. I want my mommy. I want someone to hold me and tell me it will be okay. But no one does. The only comfort I have is George, my monkey. And no one calls me or visits me. And it hurts because no one cares. At that moment no one would know if I was alive or dead. And more important, it seems that no one cares. Other people have visitors, but not me. Even times that I've had to spend the holidays in the hospital, I don't have visitors. It hurts, but what are you going to do? I ceased expecting people to care, ceased hoping people would visit a long time ago. Because it just hurts too much when you're let down. In the end it's important to remember that in life, there's only one person you can count on - yourself. You live alone, and you die alone. Everything else is extra. It's a hard lesson to learn, but one that is necessary.