For Eva
Eva, also known as "65_RedRoses," is dying. I read her blog. I follow what is happening with the documentary they made about her lung transplant (and I can't wait until I can see it. When will it be released to the States?!?!).
Part of me wants to BE Eva. I want to be successful at spreading awareness about Cystic Fibrosis. I want to be gorgeous even when I'm sick. I want to have the words to express how I feel. I write in my personal journal every night, but I feel like my blog should be much more. Updates on how I'm doing. Feelings about life. Wisdom. Hope. Love.
I want to live my life with grace and love like Eva has. I want to be as much fun as Eva, but lots of times, I am grumpy. And I'm sarcastic. I think my sarcasm often comes off as negativity, but I don't mean it that way. In my brain, my thoughts about my life and my disease(s) are hopeful.
Tonight, I would like to quote some of my favorite things that Eva has written on her blog http://65redroses.livejournal.com/
I would also encourage you to read the whole thing. It's better than anything I could ever write. (Which makes my dream of becoming a published author all the more daunting.)
So here are quotes from Eva:
"you'd be amazed at what in the world can be solved with a good cuddle."
Here she is talking about her friends and family:
"they say it is easier to be here next to me and be aware of my condition than it is to stay far away and worry about how bad it is. they say it is harder to call and try and read between the lines of 'how are you' and 'just fine' than it is to hold my hair back."
I wonder if my friends and family feel the same way. Sometimes I feel them push away when I'm sick, and sometimes they are right there. It's complicated.
She writes my exact feelings, and it's eerie and comforting all at the same time:
"in fact i think thats part of it too.. rather than looking forward to a perfect future or wondering if things might ever get hard..I can personally guarantee that it WILL be hard.
but to make up for how hard it will be I can also guarantee that I will laugh hard, live hard and love hard.
my life is a rollercoaster with killer highs and deafening lows. but i come with advance warning. if you don't think you can handle it i suggest getting off now. it's going to be one hell of a ride."
Again, she is what I want to be:
"and i will not stop writing. i will not stop letting people in. i will not stop talking about what is it to be 25 and held back. 25 and waiting to live. 25 and begging for another chance.
please let me live again.
please let me walk. let me dance. let me breathe."
On Love:
"i believe, more than anything else, that LOVE is worth it.
the world is better with more love then less.
there is no limited amount of love.
it is endless.
limitless.
without borders.
why not love MORE?
harder?
deeper?
with everything we have?
what is there to be scared of?
even if rejected or lost or turned away...we still learn
there is no negative.
LOVE.
fiercely.
with strength.
passion
and conviction."
I often feel this way when I'm in the hospital:
"i felt angry that all these people visiting my room got to walk out and leave.
leave me waiting.
waiting for my life to start.
i'm sick of being on pause.
i want my fucking life back already!"
I think that's all the quotes I'm going to include tonight. Maybe I'll include more at a later date. But for now, I need a good cry.
My lungs are healthy (and I still plan on writing about why. I'm a little nervous about it because... well... let's just say it's "unconventional." And also, I want every CFer to have access to what I'm doing, but it's not possible right now. Hopefully it will be soon).
Anyways. My lungs are healthy, but other parts of me are not. I don't know how much more of the "other diseases" I can take. I'm okay with my CF - sometimes I love my CF because of the way it has shaped my life and who I am. For example, I tend not to take as many things for granted, and for that I am grateful for my CF. I'm not saying it doesn't suck. It does. But it also is a very big part of who I am.
The other crap I'm dealing with? I just want it to go away.
And I'd like to be able to stay awake like a normal person. Do you have any idea how tired I am of napping. Nap, nap, nap, food. That's how my days go.
Speaking of napping, it's way past my bedtime. And we all know how important my sleep is.
Please keep Eva in your thoughts. And read her livejournal. It's amazing. The link is http://65redroses.livejournal.com/
You have no idea how much I'm going to miss reading the thoughts I wish I could express. Maybe I will have to suck it up and become a serious blogger again. A CF blogger. An all those other things I deal with blogger. A human blogger. At least, that's the goal.
Goodnight
Part of me wants to BE Eva. I want to be successful at spreading awareness about Cystic Fibrosis. I want to be gorgeous even when I'm sick. I want to have the words to express how I feel. I write in my personal journal every night, but I feel like my blog should be much more. Updates on how I'm doing. Feelings about life. Wisdom. Hope. Love.
I want to live my life with grace and love like Eva has. I want to be as much fun as Eva, but lots of times, I am grumpy. And I'm sarcastic. I think my sarcasm often comes off as negativity, but I don't mean it that way. In my brain, my thoughts about my life and my disease(s) are hopeful.
Tonight, I would like to quote some of my favorite things that Eva has written on her blog http://65redroses.livejournal.com/
I would also encourage you to read the whole thing. It's better than anything I could ever write. (Which makes my dream of becoming a published author all the more daunting.)
So here are quotes from Eva:
"you'd be amazed at what in the world can be solved with a good cuddle."
Here she is talking about her friends and family:
"they say it is easier to be here next to me and be aware of my condition than it is to stay far away and worry about how bad it is. they say it is harder to call and try and read between the lines of 'how are you' and 'just fine' than it is to hold my hair back."
I wonder if my friends and family feel the same way. Sometimes I feel them push away when I'm sick, and sometimes they are right there. It's complicated.
She writes my exact feelings, and it's eerie and comforting all at the same time:
"in fact i think thats part of it too.. rather than looking forward to a perfect future or wondering if things might ever get hard..I can personally guarantee that it WILL be hard.
but to make up for how hard it will be I can also guarantee that I will laugh hard, live hard and love hard.
my life is a rollercoaster with killer highs and deafening lows. but i come with advance warning. if you don't think you can handle it i suggest getting off now. it's going to be one hell of a ride."
Again, she is what I want to be:
"and i will not stop writing. i will not stop letting people in. i will not stop talking about what is it to be 25 and held back. 25 and waiting to live. 25 and begging for another chance.
please let me live again.
please let me walk. let me dance. let me breathe."
On Love:
"i believe, more than anything else, that LOVE is worth it.
the world is better with more love then less.
there is no limited amount of love.
it is endless.
limitless.
without borders.
why not love MORE?
harder?
deeper?
with everything we have?
what is there to be scared of?
even if rejected or lost or turned away...we still learn
there is no negative.
LOVE.
fiercely.
with strength.
passion
and conviction."
I often feel this way when I'm in the hospital:
"i felt angry that all these people visiting my room got to walk out and leave.
leave me waiting.
waiting for my life to start.
i'm sick of being on pause.
i want my fucking life back already!"
I think that's all the quotes I'm going to include tonight. Maybe I'll include more at a later date. But for now, I need a good cry.
My lungs are healthy (and I still plan on writing about why. I'm a little nervous about it because... well... let's just say it's "unconventional." And also, I want every CFer to have access to what I'm doing, but it's not possible right now. Hopefully it will be soon).
Anyways. My lungs are healthy, but other parts of me are not. I don't know how much more of the "other diseases" I can take. I'm okay with my CF - sometimes I love my CF because of the way it has shaped my life and who I am. For example, I tend not to take as many things for granted, and for that I am grateful for my CF. I'm not saying it doesn't suck. It does. But it also is a very big part of who I am.
The other crap I'm dealing with? I just want it to go away.
And I'd like to be able to stay awake like a normal person. Do you have any idea how tired I am of napping. Nap, nap, nap, food. That's how my days go.
Speaking of napping, it's way past my bedtime. And we all know how important my sleep is.
Please keep Eva in your thoughts. And read her livejournal. It's amazing. The link is http://65redroses.livejournal.com/
You have no idea how much I'm going to miss reading the thoughts I wish I could express. Maybe I will have to suck it up and become a serious blogger again. A CF blogger. An all those other things I deal with blogger. A human blogger. At least, that's the goal.
Goodnight
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