wow.

overwhelmed. brim-full. exploding at the seams.

this is me.

the world is full of kind souls and kindred spirits.

i know that i am lucky to be able to see that. my view of humanity lately is sliver thin. i am locked up in a fortress high above the clouds. closest friends and family like guardian watch dogs circling the entrance ways keeping the stress and bad guys and germs at bay. i sit afloat the raindrops letting only positive rays of sunlight cuddle me up.

the messages that are allowed to pass are all in the form of mail.

every day, sitting cross-legged on my hospital bed, with whomever is my 'lady-in-waiting' for the afternoon, i open envelope after envelope of encouragement.

'thank you' simply isn't enough to express my gratitude to the strangers around the world. 'THANK YOU' needs to be shouted from rooftops and if I were my at full power, 'thank you' would be danced and high-kicked and tossed high!

i wanted to keep posting each letter i received. show each expression of joy to my readers, respond to every message of love and hope and inspiration....but i can't. i'm so sorry. i feel guilty over not being able to acknowledge each of you individually.

i am too tired.

my dad says i need to do my job. and my job is eating good food, staying calm, sleeping lots and focusing in on my breath and health. he says that everyone who sent me cards will understand that right now i have to do my job. he says that if i just tell everyone the truth...that i love all the messages and am so grateful for every word but i simply can't respond...that you will all forgive me and understand the position i am in. my dad is pretty smart so i think maybe he is right.

my wall of love is building. is growing. it is....woah. at this exact moment....the clouds outside my window broke for only a moment and a giant beam of warm light streamed through my window and covered quinn (who is snuggled up beside me reading) and i in sunshine. i live for moments like these.

i guess a bit more of an update is needed. less rambling stream of conciousness and more...'what is going on!?!'

i have been in hospital for a week and 2 days. i was admitted because i had a very minor case of pneumonia. a small infection in lungs running on 15% however causes some major problems breathing. because my whole body is working so hard to intake oxygen a lot of muscles that don't normally see action are joining into the fight, being overworked and causing a lot of pain. i've needed some pain medication and management to calm down those muscles so i can calmly intake oxygen and help salvage what is left of my lungs.

the good news is i am feeling a lot better. a lot more like myself. i still can't walk more than a few steps or stay standing longer than 30 seconds but when i am sitting in my bed i can talk and laugh and just be present in my surroundings...which is more than i could do last week.

i don't credit myself at all for this recovery. normally, i'm on my own a lot in hospital which is totally fine, i've grown up this way and am more than used to taking care of myself. this time...because i have been so weak and because the mental focus needed to pull my body through is much tougher (especially with all the film stuff happening) my support network has rallied like never before.
i am never alone. there is a schedule beside my bed. it is even colour specific with 'handlers' in red (the ones who come for 4-6 hours at a time and are responsible for making sure i eat and sleep and have quiet time and for kicking other visitors out), with 'visitors' in green (close friends and family who want to say hello but might tire me out more so can only come for 20-40 minutes) and with 'helpers' in black (friends who have offered services with massage or physio). justin is responsible for making sure i sleep by curling up beside in bed each night and sleeping until jackie relieves him each morning. she comes at 7:30 am and is the softest, huggiest wake up call one could ever wish for. she feeds me breakfast gets me ready for the day. quinn has had this whole week off and has spent more time here than anywhere else, lots of quiet time cuddled up together chatting or watching old girlie movies or even just lying still. Rachel and Beth have helped me open mail and add to my wall of love and my parents are often here in the evening with dinners that have been delivered to our doorstep by supportive neighbours.

this is why i say i live in a fortress that love built.

i am so grateful and thankful and blessed.

every ounce of love that i have planted in my past is now shooting out of the earth, growing and supplying me with shelter and nourishment.

and to circle around again...the messages of hope and love and encouragement that i have received from total strangers is what causes me to keep my chin held high.

this card is just an example of why i fight...why i struggle to hold every breath..


Dear Eva,

Hello! My name is Lindsay and I'm a 22 year old CF-er. I graduated in August from the University of Virginia and now work for a campus ministry here at UVA. Found your blog from Nate and Patty-Sue's blog (don't actually know them...just read their blog. Isn't the internet great!?) And wanted to add a card to your collection and let you know as many others have that you are known, loved and prayed for. You said in a blog entry that you have "stories to tell, theories about our world and declarations of love." Just wanted to let you know that YOUR story is being heard (by people you don't even know), YOUR theories are valued and are making a difference and YOUR public fight for life and breath is causing a resounding declaration of love. I'm praying for your strength to keep up the fight but also for peace in knowing that you have and continue to make a difference. That whether your body dies soon or 50 years from now, you have already lived with purpose. Something not everyone can say. Thank you, as a fellow CF-er, for all your work. I'll continue to follow your story and pray for strength, peace, hope and smiles.
Love, Lindsay



And now I will leave you with a few photos from the last couple of days, taken on my imac webcam. just for fun!


Putting cards onto boards for the wall-of-love (hospital version) with Beth!







i LOVE all the colours of the RAINBOW!




the sun shining in on Quinn and I this morning...





tough times breathing last night.






love love love!

Tonight is the world broadcast premiere of 65_RedRoses in Canada.
This is different for me as it will be the first time that I am not there to witness a major step with the audience. For VIFF and HotDocs, I was there to witness each audiences reaction. I connected with their laughter and tears, I saw the effects of my life on others.
This time, each unique experience, every persons glimpse of my life will happen in the privacy of their own homes. They can turn up the volume, change the channel or turn me off and I won't even know. It's strange and surreal and exciting.

I myself will be watching in the hospital, all tucked up in my pj's with my 15 closest friends and family surrounding me in support. Holding my hand and my spirit as I again watch what I though was my past surround me as my potential future. I can barely breathe again and I would be lying if I said I wasn't scared but if you've seen the film then you know I can do it.

I can do it.

I will do it again. Yes, I am waiting, not dancing or walking or skipping but waiting to live.

I am proud of the person I was during that first wait for life so I am not ashamed of this shadow I am living now. I can still be myself, albeit less glittery. I can still be full of love and surround myself with laughter and positive stories. I can still connect the world of the sick with the world of the living. I am still young, I am still passionate.

Please, if there are any new readers out there....please care.

Care enough to sign an organ donor registry. Care enough to check out our website to find out how to give the gift of life across Canada at...

www.65redroses.com

Care enough to let me into your heart. Care enough to make your mark on the world. Volunteer, fall in love, take deep breaths, twirl and never ever ever give up.

For those of you who have fallen here for the first time... I am going to copy paste an article that was in EYE WEEKLY this week. Phil and Mish (the directors/producers of the film) and I were interviewed for this article last week and I think that Erin Cauchi did an amazing job at summing up not only what this film means, but also my blog and internet presence and what that may mean for this my life and the world we live in. I wanted to write a proper introduction to my journal and to my life and unapologetically explain what this blog was written for and how the film was made and why I am in awe of the human spirit and the unflagging support of everyone in my life. But the truth is I am too tired and Erin wrote it much better than I ever could. So please take this piece as an intro to my blog if you dare to jump in. It's the good the bad, the beautiful and the ugly, the comedy, tragedy, love story .. it is the truth.

I hope that this is not the end of this film in Canada but merely the beginning of this film on the world platform.
I hope that audiences care more about real people than reality TV.
I wish for passion over apathy.
Plea for awareness over ignorance.

Here is the wonderful article by Erin Cauchi for EYEWEEKLY.com.









Wave of inspiration

Hit Canadian documentary 65_RedRoses details a young woman’s spirited war on cystic fibrosis — but Eva Markvoort’s battle continues even as the movie reaches its biggest audience yet.

BY E.D. Cauchi November 16, 2009 13:11


65_RedRoses
airs on CBC’s The Passionate Eye tonight (Nov. 16) at 10pm (ET & PT) and 7pm (PT only)

She looks like a model — a stunning 5’9 with fiery hair and a vibrant, extroverted personality. Her movie is winning awards at film festivals around the world and her LiveJournal page has thousands of avid followers. Google knows to anticipate her name.

But Eva Markvoort is not a rising Hollywood celeb. Her film, 65_RedRoses, is a documentary tracing her journey through a double-lung transplant. She suffers from cystic fibrosis, the fatal respiratory condition that, in simple terms, causes a build-up of mucus in the lungs and impedes breathing. It’s the most common genetic disease found in Canadians. Says Markvoort, during a recent interview with EYE WEEKLY: “Some people have brown hair, some people have braces, some people have to be in and out of the hospital.”

Though she’s lived with the disease since birth, the 25-year-old theatre student from the University of Victoria has spent her years attempting a normal lifestyle. Her flippancy towards her condition is seen throughout 65_RedRoses — which screened at Hot Docs last spring and makes its TV debut tonight on CBC’s The Passionate Eye — and that attitude is only one indication of her silver-lining personality. She credits CF for strengthening the bond she has with her younger brother and sister. She names them as caregivers and protectors — an uncommon dynamic for an elder sibling to admit to — yet her optimism doesn’t erase the feeling that she faces mortality alone.

“There is a part of me that [my family] will never understand… and that I deal with every day of my life,” she wrote in her first online journal entry in 2006. “I need somewhere to vent. To let go and not always be motivating and inspiring. I need somewhere to let my fears go unleashed.”

Since that post, Markvoort has written with remarkable openness, publishing photos, poems and diary entries. She initially intended to connect only with fellow CF patients (whom she is not allowed to meet in person because sufferers can make each other sicker), but visitors to her site have left hundreds of comments; some have started up their own LiveJournals in support for her struggle.

That ability to “inspire and motivate” are what moved Markvoort's long-time friend Philip Lyall to introduce her to his UBC film-school partner Nimisha Makerji. The pair had been looking for a post-graduation project and decided to chronicle Markvoort’s wait for the double-lung transplant. They named the film 65_RedRoses, after her online identity, itself inspired by the way Markvoort used to mispronounce “cystic fibrosis” as a toddler.

When co-director/producers/editors Lyall and Makerji began filming, Markvoort’s lungs were so clogged doctors said that, without a transplant, she wouldn’t make it to 2009.

“We thought she might actually die,” says Makerji. “That’s one of the surprises of the documentary: you never know where it’s going to go.”


As captured in the film, a mundane visit to a pumpkin patch the week before Halloween ’07 gets interrupted by a piercing beep from Markvoort’s pager: a new pair of lungs is available for transplant. It’s such an excruciatingly emotional moment that Lyall nearly drops his camera. “It was kind of a blur,” he says. “I didn’t even know what I shot, I was so involved in the moment.”

What footage he did get actually landed the filmmakers the CBC backing. They could afford a crew and greater post-production exposure, which led to the film’s popularity with Hot Docs audiences and three prizes at last month’s Vancouver International Film Festival, including awards for both most popular Canadian film and documentary. The film was recently picked up by PBS International and will be screened internationally.

Apart from the acclaim for the film's honesty regarding the highs and lows of Markvoort’s struggle, 65_RedRoses also made her the face of a cause by raising awareness about organ donation. In the thick of the US healthcare debate, Makerji has only praise for the Canadian system.

“[Watching Eva’s surgery] was probably one of the most amazing moments of my life,” she says. “It was beautiful. There’s an art to what surgeons do.”

Dr. John Yee, Markvoort’s surgeon and the director of BC’s Lung Transplant Program, gave Makerji and Lyall an all-access pass to appointments and even the surgery itself. (Their cameraman was getting queasy during the epidural; the team wasn’t sure they’d be able to handle watching their friend’s chest cavity being opened.) But gaining entry wasn’t the only hurdle. The filmmakers were also experiencing their own life-altering change as they had to make the step from students to professionals. Yet, says Makerji, “after the surgery was when the real drama began” as Markvoort’s body tried to adapt to the new organs.



Since the documentary’s Hot Docs permiere, Markvoort has hosted two 65_RedRoses fundraising galas for the Canadian Cystic Fibrosis Foundation, traveled to international festival screenings and done dozens of interviews. She road-tripped to California with her brother and, noting the items scratched off her to-do list in the past year, “skipped over the Brooklyn Bridge.” Yet, on the second anniversary of receiving her new lungs, Markvoort was already back on the transplant list.

In September she had to turn down her dream job, working with child cancer patients at Sick Kids Hospital’s Camp Oochigeas, because she found out she was rejecting her lungs and was diagnosed with bronchiolitis obliterans, which causes the lungs to be irreparably cut off from her airways.

Markvoort has since moved back into her parents home and is living with 15 per cent of the normal lung functionality. “It means [my] airways are … obliterated,” she says. “I can’t really walk. Can’t do stairs.” A simple task like sitting up in bed takes her five minutes. Family and friends — whom she lovingly refers to as her “ladies and gentlemen in waiting” — take shifts helping her. Hundreds of supporters have written to her professing that she’s inspired them to sign organ donor cards. More have sent letters and gifts that she hangs in her room.

The ever-busy Markvoort finds it difficult to be forcibly subdued by her body. Despite her worsening condition, she and her friend Cyrus McEachern, a UBC medical student, are working on a new organ-donation awareness campaign in the form of an art project: they locate other organ recipients, Markvoort paints the organ’s likeness onto the operated spot and McEachern photographs the subject. She continues to post on her web journal nearly every day.
Most remarkable about Markvoort is her optimism. 65_RedRoses, she says, has made her “calmer in facing death. It may be able to accomplish things that I can’t. I hope that it saves lives.”

On the night of our interview last week, Markvoort’s breathing became too obstructed and she was hospitalized. She posted on her journal first. “I am so tired,” she wrote, “but don't you worry. i will fight! i will never ever ever ever ever give up!” She is doing better but remains in hospital.





To follow me on Twitter..

http://twitter.com/65_RedRoses


To keep updated on the film via Facebook...

http://www.facebook.com/group.php?gid=60310687919&ref=ts

Great minds think alike!
Leanne and Kristin both sent the perfect sunshine-y cards to brighten up my Wall of Love!
Kristin – I’m so glad you enjoyed the film and you are very brave to have watched it after what your family has gone through.
Leanne – your dog is adorable! I wish I had him to give me a big puppy kiss right now! And the donated art supplies through UNICEF is such a wonderful and unexpected gift – thank you!


Thank you Angela and Doug Henning –
I’m so glad YOU remember my Elvis Presley impression in Gr.6!
I think I still have the VHS kicking around somewhere!





KAT!
You’re such a wonderful friend – the package was perfect! I’ve heard about Eddie Izzard, and I’m looking forward to watching the DVD. PERFECT colors of nail polish – how very hardcore of us!
I’m wearing the star hair clips right now!
Your package arrived just as I was about to leave for the hospital, so a perfect time to add a smile to my day.

Susan and Dianna –
Your pretty cards will add a special brightness to my wall!




Leigh Ann. Thanks for the card.




Paul Wylie – You Scotsman You!
Just so you know, I just read your full letter out loud to my mom and my friend Ming in my best Scottish brogue! It had them in stitches, but that had everything to do with my horrible accent, and nothing to do with your lovely letter!
It’s so interesting that your favorite place is near Somerset – one of my favorite people lives in Somerset, and I’ve always wanted to visit!




I’m not quite sure what it is about Australians and their particular breeds of animals, but thanks to the Cruickshanks and to Natalie for their beautiful (and educational) Aussie Animal cards!



Steph –
Thank you for the happy warm vibes from Southern California – I could use them up here in rainy Vancouver. It’s cool that you made a doc on CF – can I see it anywhere (youtube)?

Thanks Hilary –
After years of reading your entries as “Hilarina” on LJ, I have to admit – I could barely read your writing! But thanks for the card – I love the quote on the front.





Marjolein –
I’m so glad this card reminded you of me – it is my favorite and it’s how I see myself as well. From one CFP2LTX to another – Thanks.



Greg –
I’m so glad I was able to help you out – I hope it is reflected in your grades at the end of the semester! Thanks for the letter, it’s great getting hello blasts from the past!

Anissa –
Thank you for talking to people about Organ Donation – it’s how all of us will make a difference.
PS – warm fuzzies are my favorite!

The Smith Family –
Thank you for the beautiful 3-D card – it’s gorgeous!

Thank you Lynn for the card – your son Lucas is quite an artist!




Heather –
I’m so glad you got to see the film at Hot Docs and don’t worry – I will always Believe!

Hilary –
Thank you for being such a long time reader! I simply love the dress on the card – it’s totally something that I would wear!



Ginger, my beautiful friend.
Thank you for the art – I am sending love and big hugs to you too!




Sam –
Thank you for the lovely card and kinds words. You’ve made me feel like a warrior.
PS – Give Peter a hug for me!

Meg, my darling girl,
I hope the sunshine is restoring your health and that your dreams are bigger under the open sky. If not, don’t be afraid to come home – so many people love you.



Deannie! Thanks for the starbucks cards. I love a London Fog every morning when I wake up...perfect!

Thank you Skippy mom. The card is pretty and your words of encouragement are lovely!

And all the way from Sandringham Australia...thank you Stephanie for the many roses on your card!



Thank you Jan for the wildbirds of Australia calendar...

And Michaela, Lori and Andy (I love reading your exploits on LJ elbiesee!)

The cards and postcards were awesome....



but the BEST CARD EVER!!! award goes to.......



MADE ME LAUGH SO HARD!!!!









And yes – I promise to always believe.

In dreams.

In blowing up red balloons.

In dress up birthday parties.

In Santa.

In the wind.

In love.

Hello friends!
It's Eva. Still in the hospital. Still don't have Internet, but Justin has kindly lent me the use of his iPhone to give you guys an update (I still don't have regular access to FB, LJ, email or twitter so call, text or send mail if you want to get ahold of me!) 
Checking into the hospital this time around was really difficult because I wasn't sure what the doctors would be able to do differently here then the regime I already follow at home. I was also scared of checking in and not ever checking out. That may sound extreme, & don't worry guys I'm not there yet, but my head is all over the place. Despite the strong front & the bright smile, there's still a scared little girl in me who's not ready to go.
Breathing is continually getting harder & now even sitting up in bed requires a time out to catch my breath. My dad cracked a rib playing hockey earlier this week & could no longer carry me up the stairs. Hunter had to return to school after his 5 day reading break. All this added up meant it was time to go in. My portable oxygen concentrator couldn't go high enough to get me to the hospital in my moms car sooo... 
Yay I got to ride in an ambulance! Paramedics are nice & the higher concentrated oxygen allowed me to stay calm. After a brief 6 hour wait in the ER I got settled up here on the 12th floor at VGH. As my mom said earlier I've made the right decision by coming in & I'm breathing a little easier. I don't know how long I'm going to be in, but I know I will return home soon. One of the things that is still getting me through are the letters that continue to arrive at my doorstep back home & are brought to me here by my parents. My friends are working together to recreate the wall of love here in the hospital where it's needed more than every before. 
With my lungs feeling the way they do, I'm feeling more vulnerable. With the exception of overnight, I have someone with me all the time. Whether it's the physical contact of a head on a shoulder or hearing my parents voices chat as I nap, I feel less alone in my daily struggles. 
I always knew this wasn't going to be easy. I'm starting to dig my finger nails in, gripping hard for the long haul. 
I am strong enough & on the days when I'm not the people holding me up are. And that will get me to tomorrow. 
Thankyou for your support. 
Thankyou for your love. 
I love.   

Hi all,
Eva's mum here. She is much better now that she is in hospital and receiving more oxygen and perhaps some treatment for a possible infection. She is calm and breathing well so this was a good decision to bring her in to hospital. Hopefully she will stay for a few days at least to regain stability. We will keep you posted.
JB

hey guys

i love you all so much. you have supported me in ways i never even knew existed. the cards and words of encouragement and have been the higlight of my days.
your love and energy and prayers sent from afar have kept me afloat on dark and stormy nights.
please keep sending me love.
i am going into hospital right now.

the breathing is too hard. i need help. i am going into hospital to get some help.

hopefully i will still be able to access you there. if not then my mum can help keep you guys in the know.

i am so tired but don't you worry. i will fight! i will never ever ever ever ever give up!

the ambulance is here.

i must go

remember i love you all. i love you.

the world is better with more love. so never stop loving and believing and dancing and living and loving!!!

Thank you for the rose magnet Skippy (mrsjg)!

Thank you Sandra and Candice for the lovely nail polish...bright red is my fav classic nail colour!



MY SISTER SENT ME THIS ONE!!!



a package with it too oh my!



Gerrit, Gerdien, Hanneke, Tante Reintje, Rene and Alita, Jan and Bertina, Sjany and Egbert...THANK YOU!

your words of love and thoughtfullness travel far across the world and surround me with hugs and well wishes.



Thank you Bailey for the beautiful card, I hope your pregnancy goes well and that your girls grow up to be adventurures! I will pray for the safe return of your husband. God Bless.

Thanks for the prayers!










i started these last group of thank yous for the cards but am too sick to continue. i will resume when i am well enough again.

i'm so sorry.

i'm teaching my mum to use LJ so she can keep you all updated in cases of emergency!

LOVE TO MUMS EVERYWHERE!!!!

today my body is too heavy for me.

too heavy yet too scarce
not built to with-hold,
flimsy like cardboard and lagging
perhaps more like wet newspaper,
yesterdays news.
the motion of inhale
is that of lifting weights
reps of ten, fifteen, twenty, infinity
a weight i cannot put down.
i feel old and newborn
the body of the useless
a bag of bones my brother must carry
settling in my chair for the day
returned to bed as night time falls
i barely keep my head from the soup bowl.

My fav singer/songwriter Dan Mangan. His stuff has pulled me through many tough times. He is from Vancouver and one of his songs is featured in my documentary 65_RedRoses.



His website

http://www.danmanganmusic.com/site/

And he's in Europe right now!

Nov 4-7. Dubai, U.A.E. | Dubai Sound City
Nov 5 | Dubai Festival City | 9:45PM
Nov 7 | Dubai Festival City | 4:30PM

Nov 9. London, UK | Free in-store w/ Kae Sun @ Puregroove | 7PM
Nov 9. London, UK | Wilmington Arms
Nov 10. Brighton - Hove, UK | The Sanctuary Cafe w/ Matt Kebbell
Nov 11. London, UK | The Windmill Brixton w/ Kae Sun
Nov 12. London, UK | The Slaughtered Lamb w/ One Little Plane & R.G. Shiels
Nov 13. Bristol, UK | The Lansdown w/ Jack Cheshire & Stanton Delaplane
Nov 14. Edinburgh, UK | The Bowery
Nov 15. Glasgow, UK | Brel
Nov 18. London, UK | The Lexington w/ Hafdis Huld + Sweet Baboo
Nov 19. London, UK | "In The Courtyard" @ The Fly w/ Hey Rosetta!, The Superfantastics | 2:30PM
Nov 19. London, UK | Monkey Chews w/ The Superfantastics @ Ear Music

Nov 20-22. Paris, France | Time Paris Festival
Nov 20 | Time*Out | le Reservoir
Nov 21 | Red gorilla Night | Paris Gibus
Nov 22 | Star Music Cafe

Nov 25. Hamburg, Germany | Hasenschaukel
Nov 26. Copenhagen, Denmark | Klub Geyser
Nov 27. Stuttgart, Germany | Cafe Nil
Nov 28. Offenbach, Germany | Hafen 2
Nov 29. Muenster, Germany | Fachwerk
Nov 30. Reutlingen, Germany | Better2Gether
Dec 1. Hannover, Germany | Café Glocksee
Dec 2. Berlin, Germany | Box&Bar @ Deutsches Theater
Dec 3. Feldkirch, Austria | Graf Hugo
Dec 4. Leipzig, Germany | Paris Syndrom
Dec 5. Unnag, Germany | Spatz & Wal
Dec 6. Eindhoven, Netherlands | Effenaar
Dec 7. Gent, Belgium | Video
Dec 8. Amsterdam, Netherlands | Melkweg
Dec 9. Utrecht, Netherlands | Tivoli De Helling
Dec 10. Den Haag, Netherlands | Paard van Troje

the family is shaken. it's lost part of its roots. its trunk even.

my uncle dave has passed away.

he was the eldest of the five Brine children. a formidable family no doubt.

my best memory with dave was when he replaced my mom as 'early morning caretaker' just after being let out of the ICU post transplant. Dr. Yee checked in on us playing cribbage at 5:30 a.m. and told me I was allowed out on a pass (for the first time with new lungs!) We didn't have to be told twice! Dave had me out the door in 2 hoodies and red slippers before Dr. Yee changed his mind. We drove in the little MGB down to Joe's diner. He ordered me every type of breakfast food I could possibly want and his jaw dropped as I managed to actually eat the bacon, eggs, pancakes, sausages, ham etc... Uncle Dave was a supreme court judge here in BC and as we inhaled cheap coffee he explained the entire judicial system to me. He spoke in terms I understood and it started to sink in exactly why he was in the position he was.

Wise and practical and always listening, my uncle Dave was a family man and it is his family that I send my love to now. He battled cancer for 10 months and died on friday.

i'm sorry i havn't posted since then. i didn't know how to acknowledge it but couldn't think of anything else to say. it's not really my story to tell and i wish i could do more for my cousins and aunt robin.

my weekend has been tumultuous.

kassia arrived just as we got the news about dave and had to be picked up by quinn and rachel. the girls came over to look after me as my parents joined my aunt at their place. hunter and annie arrived by friday night as well.

i'll post more about the weekend and the gala and today's mail when i get the energy. it's been a rough couple of days healthwise.

Thanks Tori for the gorgeous little mirror! It will go perfectly with my outfit for the gala because the theme is the roaring twenties!

Thank Stephanie for the bright card. I love sunflowers. So sunny!





Lisa, the card is adorable....very BFF! And fyi, if you live close to windsor and happen to pick up the canadian channel CBC then you can see the film when it airs on The Passionate Eye on November 16th at 10:00 p.s.

Bernie...the card totally made me laugh out loud too. Thanks darling, it's great to know I've got you by my side. (and frogs in raincoats are always welcome!)






And to another Lisa, Thank you for the bright fishy card....can't wait to add it to my wall of love!

Thank you Elissa!!!

http://imgs.xkcd.com/comics/lego.png

quinn was my lovely lady-in-waiting this morning and brought me delicious toast and honey with milky tea to start my day off right. had the interview with Gloria at 10:30 for the CBC Radio One Noon Hour Show (it was pre-recorded).

It's always funny hearing your own voice, it never sounds how you think it's going to sound. I really like this 'interview by phone' thing. It helps me out by still making me feel like I'm being proactive and making a difference but it doesn't require the energy of getting all made up and dressed and leaving the house. No one can tell over the phone that I havn't washed my hair in 3 days and am wearing Tinkerbell pajamas. Awesome.

After lunch Cyrus came over and set up our tiny studio in my living room again. Today I painted Savilla, a beautiful model, inside and out, who received a living donor kidney transplant from a complete stranger 10 months ago. An incredible story! Then was Darvy who is a fellow CF-er and double-lung transplant recipient just like me! He had me in stitches while I painted and was super fun to photo as well.
I'm really proud of what Cyrus and I are learning along the way and how each photoshoot seems to get better and better. The other great thing is that everyone we've met on this journey has been so generous with their time and energy. And I've learned that every transplant is a fascinating story waiting to be told...I'm glad we are getting the opportunity...no wait...we didn't GET this opportunity...we made it up! We seized it! I'm not sure yet where this project will end up but I know it will be powerful and beautiful. So grateful to our inspiring models!

This weekend I am attending the 65 Roses Gala. I'm really excited to get dressed up and see some familiar faces. I just hope I can make it though the night without getting too worn down. I'll be flanked by all of my ladies in waiting (aka my BEST FRIENDS!!!) Kassia is even flying in from Calgary tomorrow to join in. At my table is Ming, Quinn, Kassia, Phil, Justin, Jay, Gillian, Betsy, Ryan and myself. There is a silent auction, a delicious fancy dinner, a guest speaker (this year, not someone from my family!! Ali Brennan..I'm sure she'll do a wonderful job.)and then the fun really starts with a live auction and a great live band. I'm sure I can rely on my friends to push my wheelchair and take me on some spins on the dancefloor. For the first year, I am staying downtown in the hotel so that I can have somewhere close by to get ready and to able to rest during the night if I get worn out. I can't wait to see what the room looks like! I'll take lots of pictures...must charge battaries!



On a totally separate note, tonight I made a big step. I got back in touch with one of my old best friends that I lost after breaking up with Greg. It was too hard for us to remain friends during the break up but I missed him so much and now with all the re-evaluating of life and what matters...I got back in touch. He came to one of the screenings and I've never been so glad to see someones face.
We talked tonight for hours and I'm overwhelmingly glad that we're going to be part of each others lives again. He gets me, he was there for me throughout the whole transplant last time and we had been close for years. It's amazing how when things get tough the little things can be forgotten and friendships can be reforged. Shane asked all the right questions, wasn't afraid to face the tough stuff and is one of those guys who can laugh throughout it all. I'm so glad for my friends. And right now? There's no such thing as too many good people.

I do still miss some of the very best people who are far away. *lesigh*

This is one of my FAV little home-made cards! Foxes are my favourite animals. All bright red and excitable, always up to something and sinfully cuddly looking...ready for adventure! That's me alright!
Thank you Chryssy, you made me smile from ear to ear!



Thank you Cindy for the sunshine and thank you Joy for the joy in your card!



Thank you Jessica. Reading your letter reminded me that I'm not alone. You ARE right. We speak the same language, are up against the same struggles. I hope your wait isn't too much longer! I know we are both going to be skipping and dancing soon. I just KNOW it! Let's stick together cyster!
And

HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY TO YOU...HAPPY BIRTHDAY DEAR JESSICA...HAPPY BIRTHDAY TO YOU!

her blog is http://jesscfjourney.blogspot.com/



Thank you Anna, Brittany and Pam for the lovely flower cards to add to my wall of love!



Thank you Kirsten and Joey...Your card was refreshing. I laughed out loud when I read the inside of the card. HOLLA!!!



And Jackie!

Thank you so very much for the thoughtful gift my mum brought home from you this week. I LOVE scrapbooking and get overly excited about things like bright paper and new pop-outs and pretty designs. I am going to have so much fun with this set! I have a new album that I have been saving up for something exciting so I'll get my dad to print off some of the photos from the Vancouver International Film Festival and make an album.

I just did a radio interview (over the phone) with Gloria Macarenko for CBC Radio One's Noon show called BC Almanac. You can hear it online here between 12:00 and 1:00 (pacific time)...


http://www.cbc.ca/bcalmanac/

I don't know if anyone understands what it is you all are doing for me. My day consists of a hard morning, dragging myself out of bed. coughing for ages, breaking into awakefulness, trying to force breakfast down, feeling nauseous. tired already and then.....

the mail comes!!

and i'm like a little kid!!!

I get excited! i open them all up one by one. savouring the postmark, the envelopes, the cards...every word.

I spend all day uploading them onto my computer then photobucket then LJ andby then its dinner time.

After dinner my dad reads them all out to me and I get excited all over again.

Before I go to bed one of my friends helps me by pinning them up on my wall of love and I know.

I simply know that I WILL be ok because I am surrounded by love and caring and prayers.

And that brings me peace and grace and calmness.

Thank you. Thank you for each letter, each card, each prayer.

I am forever grateful.






Thank you to the Eacretts and the entire Olivet Baptist Prayer Team. The cards are lovely and the prayers mean so much to me.



Thank you Catherine from Beds, England. The Roses are perfect for my wall of love! 65Roses is what little kids say when they cannot pronounce cystic fibrosis....hence the rose becoming the flower for CF.







This one made my day is it means that someone who saw the film went out and actually donated to the Canadian Cystic Fibrosis Foundation! How cool is that???



Ruby....
You and Cheryl are in my thoughts daily. I know she is up in heaven looking down on us. She is going to help find me new lungs I just know it. I love you so much and am so grateful for your love. Your strength helps me carry on.

Thank you for the prayers Susan! Much love to you and your two boys!



Rachel and Emily. You astound me. You are both so articulate and wise for being seniors in high school. Em, your letter had me in tears. To know that you yourself in me is such a wonderful thing and brings me so much happiness. I'm glad you are standing tall with CF now, not just hiding behind it. And Rachel, thanks for being there for her, it takes a really great person to help with all the ups and downs this disease forces us through. You are both amazing writers as well. Thank you for your insightful letters.



Thank you Kat, you have been such a wonderful support over all the years. It was perfect to see this bright and colourful card from you. Thanks chica!

Tanya, thank you for the card and all the great photos of your loved ones. So many smiling faces!

Alexa my little theater star! You were a bundle of sunshine this summer and I hope you continue to go into the arts. You are one talented girl! Thank you for the card!



Thank you Rachel Thomas, Pam Simoine and Rachel Feldbloom for the beautiful cards and messages!



Thank you Emily from Texas, your card is awesomly bright and will shine on my wall!

Thank you Terri, I wish you and your kids all the best as they battle asthma!



Thank you Sara for the virtual tour through Europe...so much fun!



Thank you Ai Hungo and Lizette for the far away postcards. I can't believe I'm getting mail from Japan and Italy!!! So excited!!!



I received a beautiful card and package from my grade 7 teacher which blew my mind! Not only did she send a touching note and a painting from her 7 year old son but she also sent me all of the poems I ever wrote in her grade seven class. She had kept them all!!! I couldn't believe it!






Thank you Diane for the yummy cinnimon rolls! Delicious!

And a HUGE thank you to TINKERBELL and her mum for sending a lovely card and the most CUDDLY tinkerbell pj's ever. They are so warm and will keep me all cozy and wrapped up.

I just found out that their dear girl is on life support at the moment so if we can all send another prayer for Jaye I would really appreciate it. She is a fellow CF double lung transplant recipient with a heart of gold. God Bless.





Thank you Lizette for the pin. It is already on my sweatshirt!



Thank you Thien-Fah Mah for all the research and work that you do. It makes such a difference in the lives of people who live with CF. Your card joins my wall of love with such honour.

And for Elizabeth L, Thank you for the many good thoughts!



And Brad....Thank you for the beautiful poem. The Dutch image as well is a great view to put up on my wall of love. Your words are kept in my heart for ever. Thank you.



Thank you Jillian for the GORGEOUS bright red shoe! I LOVE it and it will be a great addition to my christmas tree which I usually adorn only in red and white. Stunning!!!

One of the best parts of VIFF was meeting some other film makers...in particular a guy named Jason De Silva. Jason is a lot like me in that he is young, attractive and living with a fatal illness. Jason was diagnosed with MS at the age of 25. He is also filming a documentary about his experiences. His short, "First Steps" was shown before 65_RedRoses at the Vancouver International Film Festival.

I was fortunate to be able to speak with Jason after our screenings as we connected about blogging, being in a film and existing in the medical world at a young age.

Check out more about his film at http://wheniwalk.com/

Or his blog at http://wheniwalk.com/blog/

Here's a video that he made about me for his blog...





And here is the trailer for his film...



Thank you jason!!!