Updates, yay!
I guess I will start this off with good news, I've been feeling okay lately.
I am now 19. I used to think I was lucky to live past 5. Then lucky to make it past 14. As the years went on I was waiting for something to happen. Like my life has been this never ending joke. "haha you lived today but maybe not tomorrow". Like every year I was lucky to make it. I turned 18 and thought "wow. I can leave this place." Then I remembered I can't. Age is only a number. It doesn't mean anything when it comes to life. It doesn't tell you someone's experiences or how they will be in another year. Age is only important when it comes to the law. When it comes to life experiences you can't judge someone by their age. Six months before my 19th birthday I was told my health insurance was going away at 19. I started dreading my own birthday, even more than I ever had before. It didn't seem fair, I have fought for so long to beat this illness/illnesses and now it didn't matter how hard I fought because now I can't afford to fight. A friend told me I should married a rich guy so he can pay my medical bills. Sometimes that doesn't sound like a bad idea. But I won't do it. So my medical insurance is gone and I am left wondering if may it is a good idea to just give up. Just break away from all the bad...
In the last couple of weeks I have met some interesting people. They have each shown me a lot about others and myself. I wish I could repay them.
I am starting to like someone. Someone I didn't think was possible for me to like. He isn't someone I would have ever thought would give me a second glance. Last night he told me he really liked me, in every way possible. It is odd for me.
I will leave with a memory. A happy one.
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A few friends showing up at another friends.
Each one walking in and giving me a hug.
One friend sits in a chair across from me and starts throwing a pillow back and forth between he and I. I reach for the stuffed dog toy and through it at him. He throws it back at me and this continues for a little bit. He starts tossing it in the air and I joke that he loves playing with toys. We joke and joke. As he gets ready to leave a part of me is sad to see him go. I know I won't see him for awhile. I know that he wants to stay but he can't. He hugs me goodbye and tells me he will call me later.
Right after that another friend runs at me from the back of the house and hugs me as tight as he can. I laugh and after we all just sit around joking and talking, we decide to leave. We spend the night laughing and telling stories. We hung out in Steak N' Shake for 2 hours. We took too many photos and laughed too much. Later it started to pour down raining and we pulled over and got out of the car and danced and played in the rain. Blaring music and singing at the top of our lungs.
We ended the night back at my friend's house by sitting around talking about life. About the future.
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This was how I spent my birthday. My friend threw me a party with a couple friends. I needed that night and I had fun. Left a memory I want to always remember.
Monday, August 30, 2010
Friday, July 23, 2010
Newest News
Lately things have been going up and down.
I did find out that the cyst the doctors found in April, was not malignant. I hugged my doctor and my eyes watered. I was happy. My doctor said "The cyst was non-malignant. It is looking up for you." I have never been told that. Those words were one of the best things ever said to me.
More good news (non sarcastic too!). My mother was arrested. Its nice not having to hear her voice or wince everytime I hear it. For the first time in her entire life she is taking responsibility for something, the funniest part- it's something she DIDN'T do. She wants to keep her boyfriend out of trouble so she is taking the blame. Only when it comes to men, does she act like an adult or show affection for someone other than herself.
The night before last I had the urge to just get in my car and leave. I just couldn't take being here anymore. So, I picked up my friend and we headed north. We had a full tank of gas, $50 between us, cell phones, cell phone chargers, my camera (with extra batteries), music and not much else. I drove and drove. We ended up at a friend's house about 3 hours away from here. We hung out, joked around and had a good time. I knew we had to come back, didn't want to but we had to. Too many responsibilities, too many people counting on us. I wish I didn't turn around. I wish I would have kept driving. Chicago was only 2 hours from there, if that. I have friends near Chicago that would have let us stay a night. After that we could have drove somewhere else. Between her and I, we know a lot of people from around the country. All together that night we drove about 250miles. When we started out, we weren't sure of our destination but I loved that. No commitments or promises to anyone. No one knew we left. The weight was lifted off my shoulders for the first time in a long time. Even when we decided to go to our friend's house, the weightlessness lasted. I smiled and laughed. Met incredible people. But the moment I walked out their door, knowing I was headed home, the feeling came back. I miss that feeling of weightlessness.
I did find out that the cyst the doctors found in April, was not malignant. I hugged my doctor and my eyes watered. I was happy. My doctor said "The cyst was non-malignant. It is looking up for you." I have never been told that. Those words were one of the best things ever said to me.
More good news (non sarcastic too!). My mother was arrested. Its nice not having to hear her voice or wince everytime I hear it. For the first time in her entire life she is taking responsibility for something, the funniest part- it's something she DIDN'T do. She wants to keep her boyfriend out of trouble so she is taking the blame. Only when it comes to men, does she act like an adult or show affection for someone other than herself.
The night before last I had the urge to just get in my car and leave. I just couldn't take being here anymore. So, I picked up my friend and we headed north. We had a full tank of gas, $50 between us, cell phones, cell phone chargers, my camera (with extra batteries), music and not much else. I drove and drove. We ended up at a friend's house about 3 hours away from here. We hung out, joked around and had a good time. I knew we had to come back, didn't want to but we had to. Too many responsibilities, too many people counting on us. I wish I didn't turn around. I wish I would have kept driving. Chicago was only 2 hours from there, if that. I have friends near Chicago that would have let us stay a night. After that we could have drove somewhere else. Between her and I, we know a lot of people from around the country. All together that night we drove about 250miles. When we started out, we weren't sure of our destination but I loved that. No commitments or promises to anyone. No one knew we left. The weight was lifted off my shoulders for the first time in a long time. Even when we decided to go to our friend's house, the weightlessness lasted. I smiled and laughed. Met incredible people. But the moment I walked out their door, knowing I was headed home, the feeling came back. I miss that feeling of weightlessness.
Thursday, July 8, 2010
Darkness
Have you ever felt so alone that you feel this hole inside you? The hole getting bigger and bigger with each passing day, nothing helps it. Pretty soon the hole consumes you and you find it hard to fake that smile every day, you start seeing everything in a bad way. When friends tell you they love you, you say it back because you do love them but you can't feel their love for you. Little kids smiling and laughing makes you smile at their innocence but you can't help but wonder why you never had that same smile and you are jealous of them. You feel ruined. Like you are not enough for anyone, because honestly you aren't. You haven't smiled a real smile in a long time. You have become a stranger to your close friends and to yourself. You can't see the light at the end of the tunnel and you are afraid that this darkness you have become is the only thing you will ever be.
This has become my life, I hate it...
This has become my life, I hate it...
Thursday, June 17, 2010
Changes over time
I haven't really noticed how much I have changed in a little amount of time. I have noticed some changes but never thought so many.
First time realizing a significant change:
Last week an old friend of mine stopped by with a close friend, they are dating now. I haven't seen him since February and when he seen me he had to double take. He stopped for a second, barely noticeable, and then he came up to me with a smile and hugged me. He hugged me for a couple of minutes. He pulled away, looked at me, smiled and said "I've missed you so much". We hung out for awhile, just talking and joking around. He is crazy about my friend and she is crazy about him. Seeing them together and so happy, makes me happy.
Second time:
Later that same night, a couple other old friends who I used to hang out with, stopped by. They had heard my other friends were here and wanted to stop by and hangout like we used to. Two of the friends, noticeably , stopped when they saw me and then came and sat around the table with us. We started up the conversation again, talked about old times and things that have happened since. At this point there were six people plus me, just sitting around talking.
Third time:
Another friend who had rode down with the other friends, came by to hang out until they had to leave. He brought with him 2 other people I didn't know. He walked in my house and looked around, introducing everyone to the two people he brought in with him. He got around the table to me and introduced me without really glancing at me. As he sat down, for the first time he looked at me. He stopped talking and just looked, causing everyone too. He smiled at me and then picked up where he stopped. As they were leaving, everyone said bye and promised to hang out again. This friend stopped and came up to me, looked at me for a second and just gave me a huge hug. He told me that I looked happy, that he missed hanging out and that he would stop by again the following week when he was in town.
As everyone finally left I sat back down and started thinking. Thinking about everything that has happened in just the last couple months. I thought about how they acted and how they visibly reacted. I realized I have missed out on time with them. They know I don't like to be touched but they hugged me, hesitant at first because they knew this but they did anyway. I didn't flinch away. I hugged back. Part of me didn't want to let go. They are happier now. They have changed as well. Some of the guys have girlfriends now, which made me smile knowing they are happy. A large part of me realized though, they are happier without me and even though we've missed the old times and each other, we probably won't hang out for awhile. Our lives have taken different paths.
I wish I could say I am happier without them but I can't. Yes, I am happier than I was those months ago but I am happier because I have changed and worked hard to. I thought it was all for the better, they think the change is completely for the better. In reality though, I said my goodbyes to them before surgery in February, I said goodbye to some pieces of me along with them. The change is better because I am no longer close to them as I once was, this is better so I can't hurt them. It is better because even thought I am alone, they are happy. I didn't just leave pieces of myself with them, they left pieces of themselves with me. I love those memories. Those are the ones I seem to forget so easily.
The friend who said I would see him the following week, I did see two days ago. He kept his promise to me.
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I haven't said a memory in awhile so here is a good one.
Memory:
Hanging out at a good friend's house with a few other friends. We talked, listened to music and joked around for hours. Later after the majority of them left, 4 of us decided to just hang out and play Xbox. While my best friend and another friend were playing Call of Duty, I was joking around with another friend that I could win a wrestling contest against him because he would never hurt me. He took this challenge and we started wrestling (well what we call wrestling...more like making the other person fall from a standing stance). He came up and tickled me, which was against the rules since we are both extremely ticklish, I immediately fell and he declared he won. I finally collected myself enough to focus on getting him to fall. I went straight for his knees and he went down laughing.
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- This is the night after I had gotten in a fight with my mom, a bad fight. I went to the friend's house because I needed a laugh and thought maybe it would be a small escape from reality. Instead I found a wonderful escape full of laughter and the time of my life. That entire night I had forgotten all about my mom, my family, and every other issue I had going on. Sitting here remembering it causes me to smile. Plus we used this as a private joke between the four of us. That friend who I was wrestling with was the same friend who said bye after everyone else. That friend still occasionally texts me "I so won that night, you cheated"...
First time realizing a significant change:
Last week an old friend of mine stopped by with a close friend, they are dating now. I haven't seen him since February and when he seen me he had to double take. He stopped for a second, barely noticeable, and then he came up to me with a smile and hugged me. He hugged me for a couple of minutes. He pulled away, looked at me, smiled and said "I've missed you so much". We hung out for awhile, just talking and joking around. He is crazy about my friend and she is crazy about him. Seeing them together and so happy, makes me happy.
Second time:
Later that same night, a couple other old friends who I used to hang out with, stopped by. They had heard my other friends were here and wanted to stop by and hangout like we used to. Two of the friends, noticeably , stopped when they saw me and then came and sat around the table with us. We started up the conversation again, talked about old times and things that have happened since. At this point there were six people plus me, just sitting around talking.
Third time:
Another friend who had rode down with the other friends, came by to hang out until they had to leave. He brought with him 2 other people I didn't know. He walked in my house and looked around, introducing everyone to the two people he brought in with him. He got around the table to me and introduced me without really glancing at me. As he sat down, for the first time he looked at me. He stopped talking and just looked, causing everyone too. He smiled at me and then picked up where he stopped. As they were leaving, everyone said bye and promised to hang out again. This friend stopped and came up to me, looked at me for a second and just gave me a huge hug. He told me that I looked happy, that he missed hanging out and that he would stop by again the following week when he was in town.
As everyone finally left I sat back down and started thinking. Thinking about everything that has happened in just the last couple months. I thought about how they acted and how they visibly reacted. I realized I have missed out on time with them. They know I don't like to be touched but they hugged me, hesitant at first because they knew this but they did anyway. I didn't flinch away. I hugged back. Part of me didn't want to let go. They are happier now. They have changed as well. Some of the guys have girlfriends now, which made me smile knowing they are happy. A large part of me realized though, they are happier without me and even though we've missed the old times and each other, we probably won't hang out for awhile. Our lives have taken different paths.
I wish I could say I am happier without them but I can't. Yes, I am happier than I was those months ago but I am happier because I have changed and worked hard to. I thought it was all for the better, they think the change is completely for the better. In reality though, I said my goodbyes to them before surgery in February, I said goodbye to some pieces of me along with them. The change is better because I am no longer close to them as I once was, this is better so I can't hurt them. It is better because even thought I am alone, they are happy. I didn't just leave pieces of myself with them, they left pieces of themselves with me. I love those memories. Those are the ones I seem to forget so easily.
The friend who said I would see him the following week, I did see two days ago. He kept his promise to me.
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I haven't said a memory in awhile so here is a good one.
Memory:
Hanging out at a good friend's house with a few other friends. We talked, listened to music and joked around for hours. Later after the majority of them left, 4 of us decided to just hang out and play Xbox. While my best friend and another friend were playing Call of Duty, I was joking around with another friend that I could win a wrestling contest against him because he would never hurt me. He took this challenge and we started wrestling (well what we call wrestling...more like making the other person fall from a standing stance). He came up and tickled me, which was against the rules since we are both extremely ticklish, I immediately fell and he declared he won. I finally collected myself enough to focus on getting him to fall. I went straight for his knees and he went down laughing.
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- This is the night after I had gotten in a fight with my mom, a bad fight. I went to the friend's house because I needed a laugh and thought maybe it would be a small escape from reality. Instead I found a wonderful escape full of laughter and the time of my life. That entire night I had forgotten all about my mom, my family, and every other issue I had going on. Sitting here remembering it causes me to smile. Plus we used this as a private joke between the four of us. That friend who I was wrestling with was the same friend who said bye after everyone else. That friend still occasionally texts me "I so won that night, you cheated"...
Stupid body
Losing my hair again. I thought it slowed down.
Tonight as I was sitting with my brother and grandma, my grandma looked at me and her eyes filled with tears.
Without even knowing it, I made my grandma cry.
She told me that it was sad my hair is so thin. My hair used to be so thick you couldn't even seen my scalp at all. She said that I am pale again as well.
My body is wasting away it seems like these days.
I was told the other day that I had less than 4 years before my vision is gone. My optic nerve is to damaged to even swell (which it isn't suppose to on a normal person but mine should be because of my pseudotumor).
My heart is beating irregularly lately. Sometimes the pain gets so bad I start to cry. I have surgery in 2 weeks and I am wondering if my heart will be strong enough to make it through.
I am starting to wonder if I really want to fight to keep it beating, would it honestly be so bad if it just stopped? No more pain, no more hurt, no more anything....
Tonight as I was sitting with my brother and grandma, my grandma looked at me and her eyes filled with tears.
Without even knowing it, I made my grandma cry.
She told me that it was sad my hair is so thin. My hair used to be so thick you couldn't even seen my scalp at all. She said that I am pale again as well.
My body is wasting away it seems like these days.
I was told the other day that I had less than 4 years before my vision is gone. My optic nerve is to damaged to even swell (which it isn't suppose to on a normal person but mine should be because of my pseudotumor).
My heart is beating irregularly lately. Sometimes the pain gets so bad I start to cry. I have surgery in 2 weeks and I am wondering if my heart will be strong enough to make it through.
I am starting to wonder if I really want to fight to keep it beating, would it honestly be so bad if it just stopped? No more pain, no more hurt, no more anything....
Wednesday, June 16, 2010
update
I haven't posted for awhile so here is an update:
my life recently
- Spent a week away from home, went to Ohio with a close friend and met 2 other good friends in Ohio. I had the time of my life away from reality for a little while.
- Kicked out of my house then told I could come back.
- Ended 15yr friendship with best friend.
- My father called after not talking to me for months.
- My ex, first love, who I said goodbye to and let go of months ago, decided the other night that it was the perfect night to yell at me and say everything he could to hurt me. I just avoided him and went to bed. But it hurt, so much.
- Found out through a text message that an old friend died last week. His funeral was Monday and found out Tuesday.
- Received a letter from my dream school saying I still have a spot open. The school is hard to get into and I was accept last year, I passed it up. This is the second letter I have received in a month. Perfect timing...
my life recently
- Spent a week away from home, went to Ohio with a close friend and met 2 other good friends in Ohio. I had the time of my life away from reality for a little while.
- Kicked out of my house then told I could come back.
- Ended 15yr friendship with best friend.
- My father called after not talking to me for months.
- My ex, first love, who I said goodbye to and let go of months ago, decided the other night that it was the perfect night to yell at me and say everything he could to hurt me. I just avoided him and went to bed. But it hurt, so much.
- Found out through a text message that an old friend died last week. His funeral was Monday and found out Tuesday.
- Received a letter from my dream school saying I still have a spot open. The school is hard to get into and I was accept last year, I passed it up. This is the second letter I have received in a month. Perfect timing...
Monday, May 10, 2010
something happy
Things have been bad again and I need to smile so I have been trying to remember this one happy memory of my brother and me.
Memory:
It was around 4am and I was just falling asleep. Out of no where my bedroom door opens and my light turns on.
My brother was just getting home from a date. He was smiling so big.
He looks at me and says "Get up sissy, I want milk and cookies."
"Go away, go to sleep, it is 4 o'clock in the morning. People sleep at this time."
He walks over and starts shaking me lightly
"Sisssssssy get up. I want milk and cookies!"
"No"
"Then I will sit in here all night talking about milk and cookies"
"Fine"
He gets up and tells me to come on.
He walks out to the kitchen and as I put my glasses on and get up I walk out to the kitchen.
He is sitting at the kitchen table eating milk and cookies smiling at me.
I ask if he got me any and he laughs and says "nope"
We sit and talk for an hour about everything.
Laughing with each other.
We go off to bed and at 6 I get up and walk into his room.
"Bubby get up. I want milk and cookies"
He rolls over and looks at me. Flips me off and rolls back over.
I turn off the light laughing and go to bed.
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My brother is one of the few people who can get me truly laughing.
He holds onto his immaturity and innocence. I would not have it any other way.
I gave up my own dreams so he could hold onto those two things, as long as he could.
I am proud of him and the man he is becoming.
If I never do anything right in this life, I know I did the right thing staying here and watching out for him.
I love him to death.
Memory:
It was around 4am and I was just falling asleep. Out of no where my bedroom door opens and my light turns on.
My brother was just getting home from a date. He was smiling so big.
He looks at me and says "Get up sissy, I want milk and cookies."
"Go away, go to sleep, it is 4 o'clock in the morning. People sleep at this time."
He walks over and starts shaking me lightly
"Sisssssssy get up. I want milk and cookies!"
"No"
"Then I will sit in here all night talking about milk and cookies"
"Fine"
He gets up and tells me to come on.
He walks out to the kitchen and as I put my glasses on and get up I walk out to the kitchen.
He is sitting at the kitchen table eating milk and cookies smiling at me.
I ask if he got me any and he laughs and says "nope"
We sit and talk for an hour about everything.
Laughing with each other.
We go off to bed and at 6 I get up and walk into his room.
"Bubby get up. I want milk and cookies"
He rolls over and looks at me. Flips me off and rolls back over.
I turn off the light laughing and go to bed.
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My brother is one of the few people who can get me truly laughing.
He holds onto his immaturity and innocence. I would not have it any other way.
I gave up my own dreams so he could hold onto those two things, as long as he could.
I am proud of him and the man he is becoming.
If I never do anything right in this life, I know I did the right thing staying here and watching out for him.
I love him to death.
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