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what do i do

  • Nov. 1st, 2009 at 11:56 PM
heart arms
do i give in to these feelings of fear, like tendrils wrapping around my heart, squeezing me into darkness.
my heart beats faster, a small animal caught in a cage trying to claw a way out, frantic to fly
breathing in and in and in but never out, suffocating on stale air

do i allow the frightened child inside me to bang her fists upon the floor and scream that its not fair?

do i acknowledge the realist in me?

calmly consider a world without me in it?
evaluate my life goals and see if i'm happy with the path i've chosen
repair burnt bridges and reconnect with friends long since lost
pass on my message of love to all who have walked hand in hand with me, even if only for a little while
start collecting memories and recording them, ready to be passed on to the friends i'm afraid will forget the moments they changed my life.

as if my life is a delicate spider web holding millions of droplets of precious miniscule memories, i'm afraid that if one string breaks, if the gossamer falls to the ground, these treasures will fall with me.

when is too soon to start the project of wrapping these gifts?
am i giving up?

i'm not giving up.

i just don't want to be under prepared.

i don't want to find myself at the end gasping, fighting, straining, unable to communicate..feeling like there were things left unsaid.

i have stories to tell. i have theories about our world. i have declarations of love.

or do i not even go there?

do i pour all of my focus into healing? do i turn inward? visualize my lungs breathing in and out, in and out, in and out, stretching with every breath. do i hope for recovery?

or do i wish for another transplant? and how can one 'wish' for transplant. i am aware of the death of my donor every day and now as my family prepares to possibly lose me it is even more immediate that my birth will be the ruin of yet another family.
that each milestone, each holiday tradition, each celebration is heartbreaking and the saddest one yet for someone's sister and brother. i cannot wish for this. i also don't want that family in mourning to be mine.

or yet another possibility...

do i ignore it all?

do i live each day for the gift that it is?

put one foot in front of the other and try to keep my hands busy and my mind active? set small goals and continue to participate in society? spend time doing the little things that lower my heart rate and make me happy. laugh with friends , curl up with my cat, rest, draw, write.
anything to keep from loneliness and the hollowness that it echoes in my heartbeat.

or do i focus on what is it i've done here?

scramble as fast as i can to get my message as far as it can go. spread awareness about cf, help to find a cure to spare others of this fate. speak at functions, push the film internationally, try and do interviews before its too late. write back to everyone who needs support. try and influence one person at a time.

i think a lot about my legacy.

about making a difference, leaving this world better for having been apart of it.

i won't have children. this breaks my heart more than anyone will ever know.
a child is a form of legacy. it is a part of you that lives beyond your skin. children are the gift of immortality. the love between a mother and child is the strongest bond and one i rarely admit to yearning for.

what will make me immortal?
on whose heart have i left fingerprints?
have i changed this place?
did i do enough?













Comments

( 84 comments — Leave a comment )
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(Anonymous) wrote:
Nov. 2nd, 2009 10:57 am (UTC)
Hugs
Sometimes there are just no words
((((((((hugs)))))))))
T
[info]65redroses wrote:
Nov. 2nd, 2009 05:05 pm (UTC)
Re: Hugs
hugs!
(Anonymous) wrote:
Nov. 2nd, 2009 11:10 am (UTC)
Dearest Eva,
it is horrible that you have to deal with these very hard ethical and emotional issues that other people spend university careers on figuring out what the right answer to these questions is....
How heartbreaking, all of this. But I am sure you will find the right way. And some things will just go their way. And then there are people who will carry you for a little while along these ways...
I am thinking of you.
Lizette
(twitter.com/schmutzi)
[info]65redroses wrote:
Nov. 2nd, 2009 05:06 pm (UTC)
Thanks you!
(Anonymous) wrote:
Nov. 2nd, 2009 12:25 pm (UTC)
oh Eva!
if it is any help at all, i know how you feel. i don't have cf but i do have m.s. and i remember when i was dx in 2006 i honestly felt my world was crashing down around me. luckily i had a strong family unit to help pull me through and it looks like you have a strong family too. i have always believed everything happens for a reason and whatever is supposed to happen eventually will, in its own time. remember - you can still be creative! can you channel some of your feelings into painting or drawing right now?
anywho i just wanted you to know you have many fans and you are an inspiration to others - even when you don't feel like you are!
Hugs,
Emily in Texas
[info]65redroses wrote:
Nov. 2nd, 2009 05:08 pm (UTC)
Re: oh Eva!
Thank you! I send you strength as well in dealing with MS. That is a very difficult disease as well. My friend has MS and writes an awesome blog as he films a documentary about his journey. It's called 'When I Walk' and the blog is here
http://wheniwalk.com/blog/
Re: oh Eva! - (Anonymous) - Nov. 2nd, 2009 05:54 pm (UTC) Expand
[info]blixt wrote:
Nov. 2nd, 2009 12:50 pm (UTC)
You are in this world, you've left a mark and touched so many lives, you've accomplished a lot for 25 - let alone an ill 25 year old. I don't know how to put it so it makes any kind of sense... but there are people who love you, who have been inspired by you and are grateful to have known you. That's a kind of legacy. I think you should focus on healing and staying calm, your film is already raising awareness and spreading the message. Just focus on being Eva.
[info]65redroses wrote:
Nov. 2nd, 2009 05:09 pm (UTC)
Will do. Thanks Nana!
[info]bodylove wrote:
Nov. 2nd, 2009 01:09 pm (UTC)
Eva, I think you have all the wisdom inside of you to know what is right for you. You are a tremendous force of courage, creativity, strength, and hope. I believe that we all live on in spirit and in that sense we are all immortal. You are always in my heart. You have done so much in this world and I have no doubt that you will continue to inspire and change this world for the better.
[info]65redroses wrote:
Nov. 2nd, 2009 05:10 pm (UTC)
Thank you!
(Anonymous) wrote:
Nov. 2nd, 2009 01:43 pm (UTC)
You HAVE made a difference, Eva. A huge one. For people you know, for people you don't know, for the world.
[info]65redroses wrote:
Nov. 2nd, 2009 05:10 pm (UTC)
Thanks!
[info]silverplate88 wrote:
Nov. 2nd, 2009 02:17 pm (UTC)
Among a myriad of choices, I think they are not exclusive, not either/or.

You *are* telling your stories and declaring your loves, while you also are living each day of your life for the gift that it is.

YOu *have* left, and ARE leaving, fingerprints and lovestrokes on and within many many hearts, many more than you know.

You are a gift to us. A universe of gifts. A lasting one.
[info]65redroses wrote:
Nov. 2nd, 2009 05:04 pm (UTC)
Thank you. I think the answer is all of the above.
(Anonymous) wrote:
Nov. 2nd, 2009 02:23 pm (UTC)
hi sweetie

my heart is covered with your fingerprints......remember the strength of others

love
aunt annette

[info]65redroses wrote:
Nov. 2nd, 2009 05:04 pm (UTC)
thank you. i love you and miss you very much.
[info]fisheye wrote:
Nov. 2nd, 2009 02:31 pm (UTC)
Just by being you, you are leaving behind your legacy. But don't give up. Live your days to the max and fill those who are with you with what you want them to know. Those who you love know you love them. And no one cares about those gifts. They care about you. An irreplaceable person. Because of Meg, because of you, b/c of this documentary I wish to see, you both have taught me about CF - something I didn't even know about. You don't know me, but I'm a photographer and Meg and I have spoke of making a photographic series to spread awareness. People will keep fighting to keep CF awareness alive. Just focus your strength on fighting to keep you as healthy as you possibly can. I pray for you that you get the transplant you need. And I pray that others do the same.
[info]65redroses wrote:
Nov. 2nd, 2009 05:03 pm (UTC)
Thank you. I think that's a great idea....photographic series. Meg is great with a camera too!
(no subject) - [info]fisheye - Nov. 3rd, 2009 01:30 am (UTC) Expand
(Anonymous) wrote:
Nov. 2nd, 2009 02:35 pm (UTC)
Prayers
I don't know you and you don't know me. I've just found my way here from the CF Husband blog after finding my way there from an adoption blog I read. It feels strange to read in on your intimate thoughts and stranger to comment. But something compels me to.
You are beautiful and strong. I pray for you. I pray God's mercy, grace, healing and purpose. I pray peace and rest and hope. Bondye kapab. Souple fe'l, Bondye. (Haitian proverb of hope and healing)
[info]65redroses wrote:
Nov. 2nd, 2009 05:02 pm (UTC)
Re: Prayers
Thank you for your prayers.
(Anonymous) wrote:
Nov. 2nd, 2009 03:29 pm (UTC)
FROM LINDA
Eva,

Can you tell me how to contact NImisha? I sent an e-mail to duelogueproductions to order a copy of the DVD, but it came back. Help!!!!

ljc1948@gmail.com or lcrane1@cox.net.

Thanks and hope you are feeling better today.

Linda
[info]65redroses wrote:
Nov. 2nd, 2009 05:00 pm (UTC)
Re: FROM LINDA
Their email is dualogueproductions@yahoo.com and they are compiling a list of people who want a copy of the DVD when it comes out. It's not out yet though!
(Anonymous) wrote:
Nov. 2nd, 2009 04:10 pm (UTC)
Beloved
Eva, My four year old daughter has CF. The beginning stages of this dreadful disease are so difficult, I can't imagine what you and your family are going through. Your beauty and courage to leave a mark, to make an impression on this earth is so inspiring. Reading your blog, I instantly thought of this poem by one of my favorite writers. It's evident in your writing and the support from friends and family that you are, have been, and always will be beloved... -Elise (mom to the amazing Adelaide)

Late Fragment --by Raymond Carver

And did you get what
you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.


[info]65redroses wrote:
Nov. 2nd, 2009 05:01 pm (UTC)
Re: Beloved
Thank you.

That is a beautiful poem.
I will cherish it and call myself beloved.
[info]talesofthedsh.blogspot.com wrote:
Nov. 2nd, 2009 04:46 pm (UTC)
You've left finger prints on more hearts than you can know- more than finger prints, but Eva shaped prints. :)
You telling your story as honestly as you do, is leaving your legacy (though I'm praying that you don't leave it anytime soon, and for your 2nd miracle to happen). Not only are you showing what strength really is- that it is much more than muscle- you are an example of what true blessings are as well. My daughter and I both have a life threatening genetic syndrome ( shared with her... *sigh*); I haven't even talked about it on my blog, but my courage has been stirred by reading your heartfelt thoughts. See? Legacy. ((((hugs))))
[info]65redroses wrote:
Nov. 2nd, 2009 05:02 pm (UTC)
Thank you. May you find many hugs and love in your daughter!
(Anonymous) wrote:
Nov. 2nd, 2009 05:02 pm (UTC)
I have followed you from your first transplant. I found you looking for information on CF, transplants, hope, etc. See, I held my best friends hand while he died from CF. I held his hand 3 months before that when he and his family were told they were not candidates for transplant because of their financial situation. And a year later I watched his brother suffer the same fate.

I found your story, and I followed you everyday. You somehow managed to keep them alive for me. They didn't get their chance and you did. I watched you fight back and WIN. Each triumph I smiled with you and each set back I've cried with you. You gave me hope. You let me back into a world that I thought had died with them, but I relived it vicariously through your words. You will never know my name. You will never see me. You will never meet me. But I want you to know, that you gave me so much more comfort than anyone else has. You have touched my life and my heart, dear Eva. I am a stranger who will never forget you.
[info]65redroses wrote:
Nov. 2nd, 2009 05:14 pm (UTC)
tears are building up in me while i read this. i am so sorry for all of your loss. that just doesn't seem fair. thank you for sharing with me. thank you for letting me into your heart. thank you for remembering me.
(Anonymous) wrote:
Nov. 2nd, 2009 05:12 pm (UTC)
Eva,

I hope you don't mind my posting here as we don't know each other. I truly believe that you are part of your donor's legacy, allowing that person to live on through the life that you can live thanks to their selfless donation. Your receiving a transplant, in fact, gives the donor's life additional meaning. You are in no way connected to their death...in fact, in return for their gift of life, you are also helping them to live on...
Best wishes to you.
[info]65redroses wrote:
Nov. 2nd, 2009 05:17 pm (UTC)
Thank you for your kind words. I hadn't thought of my donor's legacy but of course that makes sense. Thank you.
[info]spirit_of_kina wrote:
Nov. 2nd, 2009 05:12 pm (UTC)
Eva, that memory is far too familiar. Kitty started doing videos just in case. And making scrap books. Death or not we would either have a piece of her, or something to laugh at with her.

It'll be ok. Don't ever be afraid to call or text me.

Love you.
[info]65redroses wrote:
Nov. 2nd, 2009 05:18 pm (UTC)
Did she? I had no idea. That's a good way to look at it...'just in case' videos...

xoxox
(no subject) - [info]spirit_of_kina - Nov. 2nd, 2009 05:23 pm (UTC) Expand
(Anonymous) wrote:
Nov. 2nd, 2009 05:14 pm (UTC)
Sending you hugs!
Eva {{BIG HUGS}} I'm speechless my heart is so heavy as you have painted such beauty and grace all through my heart. I have been following your blog since your transplant when learning of you through Nate's blog. I am a terrible writer and horrible at putting my thoughts into words, however, I wanted you to know how much you have impacted my life. You are SO gorgeous, your beautiful smile is infectious and your spunky personality invigorating. You remind me to live life to the fullest and to not take things for granted. You are in my thoughts and prayers Eva!......

Lots of Love - Terri Sayre, Florida
[info]65redroses wrote:
Nov. 2nd, 2009 05:18 pm (UTC)
Re: Sending you hugs!
Thank you Terri!
[info]daydee wrote:
Nov. 2nd, 2009 05:28 pm (UTC)
*love* Beautiful post... words are not enough.
[info]65redroses wrote:
Nov. 2nd, 2009 05:30 pm (UTC)
i feel your love.
(no subject) - [info]daydee - Nov. 2nd, 2009 06:42 pm (UTC) Expand
(no subject) - [info]65redroses - Nov. 4th, 2009 02:36 am (UTC) Expand
(no subject) - [info]daydee - Nov. 4th, 2009 02:40 am (UTC) Expand
(Anonymous) wrote:
Nov. 2nd, 2009 05:32 pm (UTC)
A mark on the soul of a stranger
Eva, I have been meaning to write you a blog comment for days now, and this morning I decided today is the day. I can not even imagine how hard this battle is for you, although I have watched two friends fight the same fight. I watch you on tv and read about you in the paper as you fight with such strength, courage and grace. You are truly amazing. We have never met and perhaps wont, but know this. I read your blog each day and I am so inspired by your courage and love of life. We are strangers, and yet you have left a wonderful and permanant mark on my soul. I find myself wondering over the course of the day how you are doing and hoping that you are having a good day. Please know that your life touches the lifes of thousands that you will never know.. Big hugs to you and wishing you a good day! Robyn
[info]65redroses wrote:
Nov. 4th, 2009 02:37 am (UTC)
Re: A mark on the soul of a stranger
Thanks Robyn! I wonder if our paths will ever cross?
[info]julssoul wrote:
Nov. 2nd, 2009 06:09 pm (UTC)
Eva this is Kinas mom and you are such a strong beautiful spirit and have touched my heart as with so many others . You hold within you a soft bright spirit that has so much to give and share . You have shared your story and your life in such a beautiful way it has touched my heart and you crawled into it so easily. You have sent such a powerful message through the documentary and everything you have done .
I have met some strong women in my life and your right up there , you have and will always continue to spread the message of CF and transplant . You have done your donor proud and have been living every minute of every day to the fullest .
I am so proud of you and Kina for what you have done and how strong you are . Your so beautiful and full of life , I have enjoyed meeting you and your family they are just as wonderful as you are!
I have sent you something that I have made and I do hope that it reaches you today or tomorrow . I do hope you enjoy it because it was made with love . You have done such a great job at getting the word out and letting people know be very proud because you have done it .
Your in my thoughts and prayers and just know that you have fought so hard and so strong that you have left so many footprints everywhere . Never be afraid of what is to come because you tackle everything with your beautiful strength .
Your message and light will live on forever.......be proud. Hugs .....Julie
[info]65redroses wrote:
Nov. 4th, 2009 02:38 am (UTC)
Thanks Julie! I love your daughter so much and you are practically family as well. Big hugs! Eva
[info]in_thegreenroom wrote:
Nov. 2nd, 2009 06:33 pm (UTC)
I'm not even sure how I began reading your blog, but I have been following you for some time now. I don't have CF, and I don't personally know anybody who does, but I think what fascinates me so much about you is that you're so close to my age (I'm 23), and you are dealing with questions and issues that most people our age don't think twice about. I'm not sure if it helps, but you have already done so many quantifiable things...much more than I have. You have already established a brilliant legacy to be enjoyed by generations to follow. You are an inspiration to me, and after following your blog for so long, I am determined to make a difference as well. None of us know how long we have on this earth, but seldom do we stop and think about it. CF has given you the gift of insight, and you've used it well. Whatever the outcome of the difficulties you're facing now, please know that your life has impacted so many others, many of whom you will never know. They read your words and say a silent prayer. And they make a promise to themselves to make the most of what they've been dealt. I can't say that enough. Thank you, Eva. I'm here. We're all here.
[info]65redroses wrote:
Nov. 4th, 2009 02:39 am (UTC)
Thank you. It makes me feel so surrounded by love. Thank you.
(Anonymous) wrote:
Nov. 2nd, 2009 06:44 pm (UTC)
Dear Eva,
You have done so so much. From reading your blog the past couple of years I can see you have touched so many people.
You really have made a real contribution to this world.
For us CFers and transplant patients as well.
Keep on being you, and I know you'll do well.
Love, Marjolein
From the Netherlands, 25, CF, 3 years post tx
[info]65redroses wrote:
Nov. 4th, 2009 02:42 am (UTC)
thank you marjolein! I am duth, did you know? my father was born in rijssen.
Cheers!
Eva
[info]lotus82 wrote:
Nov. 2nd, 2009 06:55 pm (UTC)
I love you, sweetie. I do.
[info]65redroses wrote:
Nov. 4th, 2009 02:41 am (UTC)
love you too lois! i wear your necklace every day. it brings me peace.
(no subject) - [info]lotus82 - Nov. 4th, 2009 09:39 am (UTC) Expand
(Anonymous) wrote:
Nov. 2nd, 2009 07:16 pm (UTC)
Stay Strong
Dear Eva,

This may be an ironic way of looking at the disease - but the wonderful thing about CF is that it gives you perspective. While most people drift through life cynical and mis-guided, you've learned to truly appreciate all that life offers. You have changed many lives and touched many hearts, but most importantly you have proven to the world that any obstacle can be overcome with a positive attitude and a kind demeanor. The next time you feel down, think of what you have accomplished, the insight you have gained, the lives you have changed - these are the things you must keep in mind when things become difficult. As I've said before, you have lived more in the last 25 years than most do in a lifetime. You have embraced love, life and friendship while never giving in to the destructive forces of greed, jealousy or pity. You have given strength to those who desperately need it - and you will continue to do so. I know many people who have lived to become old and wrinkled - but I only know a handful of people who truly appreciate life the way you do.

Stay strong.

Erick
[info]65redroses wrote:
Nov. 4th, 2009 02:39 am (UTC)
Re: Stay Strong
Erick,
You are a kindred spirit and I'm so glad that we have managed to cross paths. I can't wait till the day we are able to meet in the 'Real Life'.

I will.

Eva
(Anonymous) wrote:
Nov. 2nd, 2009 08:47 pm (UTC)
Dear Eva,
I found your blog only days ago. Now I read all your posts and I am incredibly sad that your life with new lungs took this turn. I hope and pray for you that somehow you will get better again and be able to live the life you deserve so much! Although I don`t know you, you touch my soul and inspire me. You seem to be such a strong person! Your pictures and your texts are beautiful. I love your courage, your creativity, your way of thinking about life and the fact that you seem to stay who you are and not let the disease take over in these difficult times. You really changed my life already! I cannot tell you how much you help me to deal with this disease myself (I, too, have cystic fibrosis) by posting your thoughts here and charing them with so many people you don`t know. You do make a difference in my life! I just want to say thank you, from all my heart!
(I hope you can understand what I want to say, for english is not my native language and it is hard for me to find the right words to express the things I want to say...)

Thank you! Thank you!
Kathrin, from Germany
[info]65redroses wrote:
Nov. 4th, 2009 04:35 pm (UTC)
THank You Kathrin. Responses like yours make it all worthwhile.
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