Quote of the Week – Week 13

The greatest thing you’ll ever learn is just to love and be loved in return.

Christian in Moulin Rouge

**Hi, I came down sick (again) so didn’t have time to do my usual picture of the quote – sorry!!**

I’ve been thinking a lot this week about Eva, her friends and family. It’s difficult to believe that it was as much as 3 whole years ago that I clicked onto my blog reader to discover a message on her LiveJournal page left by someone else saying that she had died that morning. I remember going to church the next day and bawling my eyes out. Someone said to me that she had lived much more than most people did in a lifetime. She was sick, she was in pain. But I remember all too vividly her posts in those last couple of months, how she asked for her family to make sure people fought for her life. She so desperately wanted to live, though she had accepted death too.

When news filtered out that Eva had chronic rejection people began to send her mail again from all over the globe. What was created was her ‘Wall of Love‘. One of the things sent was the quote from Moulin Rouge that she and her Dad quoted often in those final 7 weeks she spent in hospital.

The greatest thing you’ll ever learn is just to love and be loved in return.

Like three years ago, March 27th falls in Holy Week. I remember walking through The Meadows on a rainy day a few days later, reflecting on Eva, her death, her campaign for CF research and organ donation, my desire to be an organ donor and Jesus’ sacrifice when he was crucified. I remember thinking how Jesus died so others could have life. I remember thinking how that’s a little like organ donation…when you are an organ donor, you give an opportunity for someone else to have a second chance in your death.

Now I think back on those words from Moulin Rouge. I think back to all the people that spoke at Eva’s memorial and how she lived a life of love. She loved well and loved hard. And she was loved in return.

Love is a huge theme throughout the bible – particularly in the New Testament. It is taught that the greatest thing in life is to love God, and love the people in this world. 2 simple rules, but tough to always apply.

I’m sure as the year goes on I’m going to write more about love. My real hope is to live those words out though.

**Note: I’m sad to say that this week (the day before the anniversary of Eva’s death), her friend Meg Moore died from Cystic Fibrosis related illness. Meg also starred in the award winning documentary 65_RedRoses with Eva and their friend Kina. There was a beautiful letter written by Director, Nimisha Mukerji to Eva on Wednesday which you can see here paying tribute to Eva and Meg.**

65_RedRoses Premiere in the USA

This is one for any of my readers in the US of A. Most of my regular readers have heard me talk about Eva Markvoort, a girl who was born the same week as me, but in Canada with a genetic disease – Cystic Fibrosis. While on the wait for a double lung transplant, a friend asked if she  would be willing to be the subject of a documentary about living with CF and being on the wait list for an organ transplant.

65_RedRoses came out in 2009 and has since won numerous awards at film festivals across North America. The documentary originally ended with Eva walking down  a street healthier than she’d really ever been with a future ahead of her. Of course, we know now that 2 years later she was diagnosed with chronic rejection and while on the wait for a second transplant she died a few days before her 26th birthday.

The documentary has since been updated to reflect that, and will premiere on the Oprah Winfrey Network as part of the OWN Documentary Club tonight (Thursday) in the USA at 9/8c.

If you are able to watch, please do so. Hopefully when you watch you’ll understand why I’m so passionate about raising awareness of Organ Donation and the need for people to sign up on organ donor registers and talk about their wishes with their families.

The wall: to bring pleasure or pain?

“It seems to me that if you or I must choose between two courses of thought or action, we should remember our dying and try so to live that our death brings no pleasure on the world”

-John Steinbeck

2 years ago, I quoted those words reflecting on the death of Eva Markvoort, a blogger who had a huge impact on me and thousands of others across the world. I found myself deeply affected by her death, which came as a shock to me for two reasons. Firstly, even the people who I’m very close to that have died, I’ve rarely broken down in tears as a reaction to their death. Secondly, I had never met or even spoken to Eva.

I think Eva epitomised those words from Steinbeck. Eva knew her life would likely be shorter than most of her peers. She could have chosen a very different path of bitterness, anger, resentment. Instead, she chose to live a life of love. She chose to battle her CF and chronic rejection with everything she had. She chose to take risks. She chose to be vulnerable allowing a film crew into her and her family’s life at one of the toughest times of her life so that others might understand what life is like for someone waiting for a transplant and how it affects those around them. She found ways of living life and making a difference to those around her in very creative ways. When life said ‘no’ she’d fight for a ‘yes’.

Her death brought no pleasure on the world.

I was watching an episode of The Mentalist, where a guy was the intended target for a car bomb and everyone thinks he’s dead. The CBI decide to let people think this is the case in the hope it will help them find the murderer. During the investigation the guy gets to hear what people say and think about him. Let’s just say a lot of it wasn’t positive.

Quite the wake up call.

I really wouldn’t want people being relieved or glad that I’m dead – apart from the ‘LA is kicking it with Jesus now‘ factor wearing her heavenly pretty shoes that don’t give her blisters* singing songs to God that sound nothing like music made by Coldplay with lots of freaky creatures with wings and tons of eyes** doing the same thing. :)

The main thing is – we’re not going live here forever and at some point we’re going to die. So we have two possible courses – live to bring pain in the world or live to bring pleasure in the world.

I would like to choose the latter course.

*this is not mentioned in the bible, but I’m hoping in the new heaven & earth that there will be gorgeous shoes that don’t bring you pain to wear like the ones here on earth.
** Confused? See Revelation 4&5 for more details. Apparently heaven is not a peace and quiet kind of place. It sounds like it be quite the musical gig and the reserved religious types might be a little uncomfortable with the worship there.

Causes I support: Cystic Fibrosis Trust

When I first began lent I wasn’t sure what charities I would pick each Sunday – except for the last one which I plan to feature on Easter Sunday. Today’s choice was an easy one to make.

A Message from Eva from Justin Cousineau on Vimeo.

Today marks exactly one year since Eva Markvoort lost her battle with chronic rejection & cystic fibrosis. The video above was shown at a benefit concert in Vancouver in honour of Eva last month. For whatever reason, I’ve ended up following a lot of blogs written by people who have CF. They have inspired me in so many ways, not just because the resilience they have shown in how they’ve dealt with the ups and downs of chronic & life threatening illness, but also because of who they are.

Though I think it’s safe to say that Eva has inspired me more than any other person ‘online’.

I was shocked at how much it upset me when she died last March, the week before our 26th birthdays. I remember feeling so guilty that I got to turn 26, and Eva didn’t.

I’ve ended up learning a lot about CF (and lots of other things too) from following the blogs of Tricia & Nathan Lawrenson, Oli Lewington, Eva Markvoort and Tor Tremlett over the last few years.

I know that the reason Tricia, Oli, Tor and many, many others who have CF are alive today are due to the advances in treatments thanks to research done by Cystic Fibrosis charities around the world. And I know that they and their families have done a lot of fundraising for the CF foundations in their countries in all sorts of ways – Eva’s dream was that one day in her lifetime ‘CF’ would stand for ‘Cure Found’

So today, in honour of Eva, I would ask that you would consider giving a donation to the Cystic Fibrosis Trust (or the equivalent in your country for those outside the UK).

Thanks guys.

Let’s hope that Eva’s dream can come true in our lifetime!

Cystic Fibrosis Trust (UK)

Cystric Fibrosis Association (Ireland)

Cystic Fibrosis Foundation (USA)

Canadian Cystic Fibrosis Foundation (Canada)

Cystic Fibrosis in Australia (Aus)

Cystic Fibrosis Association (New Zealand)

PS It was Tricia that pointed her blog readers towards Oli & Nush (which reminds me of Charlie & Lola) for any of you that don’t really know what CF is.

Not the end of their love

There are a few people my blog readers ‘know’ well, just because I’ve asked you guys to pray. In the last year 2 people I’ve really being pretty much bashing down the door of the heavens for are Eva Markvoort (who died a few days before her 26th birthday last March) & baby Oliver Gill (who died on Christmas morning just past).

I just wanted to let you guys know how their family & friends are continuing their legacy. They are not going to be forgotten.

Firstly, Oliver’s parents are setting up the Love Oliver trust.

This trust is going help raise funds to practically support families in Ward 2 at the Royal Hospital for Sick Children (aka Sick Kids Hospital) in Edinburgh, where Oliver spent a lot of time during his treatment. It will also be used to help fund research for children’s cancers. It was incredible to see how Oliver touched people all over the world with his smile & resilience, shown by the sheer number of comments that filled Oliver’s Blog on facebook.

Find out more about the trust here, and you can also make donations here.

And there is the #4Eva movement.

The makers of the documentary Eva starred in during her wait for transplant in 2007 have continued to work to spread the word of 65_RedRoses. One of Eva’s wishes was for the 65_RedRoses to be shown in the USA and that is finally happening!

It has been picked up by the Oprah Winfrey Network & had amazing support from Oprah, and Rosie O’Donnell. You can find out more here – Philip & Nimisha actually got to meet Oprah in person at the Sundance Film Festival last week!

I just wanted to share  - they may have left this earth, but their legacies are most definitely living on. As Eva said, ‘this is the end of my life, but it’s not the end of my love’

Transplant Week

And I stop my road trip updates because of something VERY important.

You know because I asked you guys to pray for Tricia, for Jess, for Eva

Because you’ll see the 65_redroses & Live Life Then Give Life buttons on my sidebar…

I am registered as an organ donor…because I hope when I die, I might be able to give someone a chance at life….a life lived, not one that is a battle to survive.

More than 10,000 people in the UK are waiting for transplants today.

1 in 2 people waiting for a lung transplant will die before they receive new lungs in the UK.

Well..this week is Transplant Week in the UK.

Please, please, please consider… 1) Signing on the organ donor register 2) Letting your close family & friends know of your wishes 3) Spread the word about transplant week

If you’re not sure of why it’s so important...you’ll find real life stories on the LLTGL blog.

Thanks for reading…and listening…

:)

Eva’s Memorial: The Celebration of Love

Again, I’m very busy this week and next week, so not got time to blog much. But very important to remind those of you who, like me, were so inspired by one Eva Markvoort, her family, friends &  the 65_RedRoses team…

Eva’s Memorial will be today at 4 p.m. in Massey Theatre, New Westminster, Vancouver.

If  (like me) you can’t be there in person, it’s going to be streamed live online at Eva’s blog.

So that’s:

9 a.m. Saturday if you’re in East Coast Australia

1 a.m. tonight for those in South Africa

Midnight tonight for those in UK

7 p.m. tonight for those on ‘Philadelphia’ time

…and I have no clue about the rest of the USA!

What will we do with our second chance?

Heal my heart and make it clean.

Open up my eyes to the things unseen.

Show me how to love like you have loved me.

Break my heart for what breaks yours,

Everything I am for your Kingdom’s cause,

As I walk from earth into eternity…”

from Hosanna – Brooke Fraser

“It seems to me that if you or I must choose between two courses of thought or action, we should remember our dying and try so to live that our death brings no pleasure on the world.”

-John Steinbeck

On Sunday I spent the afternoon in a bit of daze really. It was raining (the clocks went forward on Saturday night, so I’m glad we’re starting the ‘British summer’ the way it probably will go on…). I watched an episode of Underbelly. I text to see if anyone was going to church. Ruth said she was, we agreed to meet each other there. Saves us the embarrassment of looking like friendless losers if we stick together! ;) (NB – Ruth totally rocks & is not a friendless loser, I just thought I should clarify. But going to a big church and sitting on your own is just ever so slightly depressing)

It was tough to sing the songs…so much about God giving life, and to be honest it was just making me think of Eva. It was making me think of another blog friend who had tweeted to ask me to pray for her friend who because of pre-eclampsia had just given birth at 28 weeks gestation and her baby girl was now fighting for life in the Neo-Natal Intensive Care Unit.

And my heart was breaking.

I can’t take any more people I’m praying for dying God…

And then it was open mic. I started feeling sick and shaking. A sure fire sign that I needed to say something. So I did. I shared about the wonderful people I’d met through this crazy blogging journey.

What I didn’t realise, was that they would then ask people to gather round the people that shared and pray for them. How could I have been so dumb to have forgotten that they do this?!

And so people did before I managed to escape to pray for somebody else (rats!)

Well, that was it. I lost it. One of our pastors was praying, and I just lost it. There were tears, snot….yeah, a great night to have put on mascara. Fantastic. I turned to someone who I knew they would know why I was crying, and all I got out was, “all I can think of is Eva”

And it’s true. It’s a weird place to be grieving and feeling this strong sense of loss for someone that I’ve not actually ever met in person. And you know, she is not the first person I’ve prayed for connected with social networking that has died. There was Gavin in November, and Jess in January.

I guess though that Eva shared so much of herself with us, that you couldn’t help but read her poems, see her photos, videos and not know her heart. And I knew that she, like me was to have her 26th birthday this week, which perhaps has made this death closer to home somehow.

We were born days apart….the whole of Canada and the Atlantic Ocean between us.

She accomplished more in (almost) 26 years than most people do in a much longer lifetime.

I was walking through the rain and wind today, and I couldn’t help but think of her family and friends. And Eva’s never ceasing campaigning, her creativity in raising awareness for Cystic Fibrosis and Organ Donation.

I couldn’t help but pray “You know God, I know one day I’m going to die, somewhere, somehow….but please let it be in a way that my death brings others life?”

Morbid thoughts, I know. But it’s true. And now I feel spurred on more than ever to life as fully as possible. And somehow, do my bit to continue the legacy that Eva (& many others) have left us.

And since this is ‘Holy Week’ – isn’t that something Jesus was all about? Isn’t that what we celebrate at Easter….His death so we might have life?

We saw what Eva did with her second chance.

What are we going to do with ours?

Eva Markvoort – an inspiration

I just flicked on my blog reader to discover an update on Eva’s blog. This time not written by Eva, but by (I assume) a member of her family.

Eva died this morning at 9.30 a.m. (PST)

Eva, you were and still are an inspiration. The bravest woman I’ve ‘met’ online. I hope that somehow people in the UK will see your documentary. This is a film that needs to be seen.

I’m already signed on the NHS Organ Donor Register. My Mum knows of my wishes.

In honour of Eva, would you please leave a comment if you are on your country’s organ donor register, showing that her fight to do all she can to raise awareness has not been in vain. If you haven’t already, would you consider it?

And feel free to leave some words of love to Eva’s family and friends on Eva’s blog.

Thank you Eva, for living your life so generously, for not giving up, for being an inspiration to all of us. You’ve shown us all what it is to love, and to be loved in return.

Breathe easy, and skip, dance & rest in peace.