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?





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?





- Mood:
confused - Music:coldplay - fix me


Comments
((((((((hugs)))))))))
T
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)
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
http://wheniwalk.com/blog/
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.
my heart is covered with your fingerprints......remember the strength of others
love
aunt annette
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)
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
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.
That is a beautiful poem.
I will cherish it and call myself beloved.
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))))
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.
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.
It'll be ok. Don't ever be afraid to call or text me.
Love you.
xoxox
Lots of Love - Terri Sayre, Florida
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
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
Cheers!
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
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
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