Monday, August 20, 2007

Yesterday was just brilliant – I got to pretend I was a singer. A is in a band (a damn good one) and they were playing at a festival in London yesterday and required backing singers...cue Emily to start waving her hand in the air and shouting “ooh me!!” I was singing with another girl – a total pro, which was quite intimidating – but she was lovely and we had a really good time. As we were waiting to go onto the stage I was terrified; I have done lots of stuff on stage before but it’s usually acting where you are someone else, or if I am “myself” I am generally talking about me which, let’s face it, even I can’t get wrong. I am not very trusting in my voice (though I was desperate to try out new lungs’ singing capacity) and I had to sing in four different languages (no I don't speak 4 languages but apparently can sing in them, not really a talent, I just copy what I hear) which was an additional challenge!



The first song was a bit of a blur, but after that I was hooked! I loved being up there, loved the atmosphere bouncing off the crowd, the feeling of being on stage again (drama queen element showing through) and when we came of stage bounced up and down squealing. I think I will do it again some time.

I am currently in the process of writing a letter to my donor family. I don’t know when I will send it, might be in a few months, I am finding it very hard to write. I mean how do you summarise the incredible act that they made that day? How do I put into words how grateful I am, how much my life has changed beyond all recognition? Is this the right time to write something like this? Should I wait longer? Will they have already been hoping for recognition? So many questions...I think it will take me some time to write, and will remain strictly private, for their eyes only. I guess all you can do is say what you feel and hope they can gain from it just a fraction of how much they have done for me.

7 comments:

Pauline said...

Hi Em
Most donor families will say that the most important thing for them to hear is 'thank you'. After that they want to know that you are doing well and enjoying the new life their loved one has given you. Other than that its up to you - just be yourself and write from the heart. As for timings there isn't a good time or a bad time - its always a bittersweet one. You are sad because you lost someone you loved, but happy that they made a difference to someone else, that they didn't die in vain and that some good can come out of tragedy. Hope this helps. Watching you helps all of us - there is no better site for a donor family than a recipient doing well, happy, and loving life.
love Pauline and all at Donor Family Network www.donorfamilynetwork.co.uk

BreathinSteven said...

Hi Emily!

When you write your donor family, just be you – just be yourself. I know how easy it is to say that, but it’s more difficult for you to write.

Like you, I can talk a blue streak – I had 6-7 pages of things I wanted to say written within three weeks of receiving my beautiful, new lungs… But I also knew that my donor was young – 17-years-old – and I couldn’t imagine the grief my donor family was dealing with, and I struggled with actually completing and sending my letter for months. I finally sent it almost six months after my transplant.

Tell them about your disease, and what life was like as you waited. Tell them what it was like getting “the call” and going through surgery and recovery. And tell them what life is like now – what you’ve done and what you’re planning to do. And, very important, recognize their loss like I know you will – recognize their grief, and make it some of your own grief.

Most of all – be pink and smiley. Tell them about your life and choosing to love it. To so many of us, your donor family saved a pretty amazing person… They probably saved several amazing people. Tell them about your family BBQ you wrote about on August 2nd… You can walk, run, climb and conquer the world – but those little moments of recognition are the most precious.

Pauline said it perfectly – there probably isn’t a good time or a bad time… For some, it can’t be soon enough – for other families, you can’t wait long enough… Send it, and anyone who knows you, knows it will come from your heart. I too hope that your donor family will gain from your letter at least a fraction of what they have done for you – if they do, it will be very special.

Love,

Steve

Emily H said...

Hi Emily,

I haven't commented on here before but I just wanted to say - you write so eloquently and movingly on how your illness and your transplant have affected your life in different ways. I thought the piece about your family BBQ was beautiful, when you described how much your transplant has affected all your family. Also the piece about being able to go abroad, and about just being able to walk down the road in solitude and peace.

Tell them that. They will be only too well aware of the ripple effect of bad news affecting not only them, but extended family and friends too. I'm sure they would love to hear of the positive effects of their decision and how it's made so much difference not just to you, but to all your family and friends.

Tell them about your work in raising the profile of organ donation, and about the support that you give to others with CF. By saving you, they have allowed all that to continue as well.

I agree that there is not a right time - or if there is, it's not really possible for you to know it. Everyone grieves differently so you can't possibly guess where they are in the grieving prosess or whether the time is right for them. Of course, they will be able to go back to your letter time and time again in the future if they want to.

I am sure that whatever you say to them, it will mean a lot to them and will be very special.

Take care
Emily H (Rach's friend)

misdee said...

HI Em.

I am already pondering this letter as well. There is an open letter of thanks to peters donor on my blog, who i dont actually know anything about, but i needed to get hat raw emotion down there and then.

i think the actual letter will be very hard to do, and i hope i do it justice,

btw that pic looks great of you, you seem like a natural drama queen.

catch up with you.

Sarah

Anonymous said...

Hi Emily,

The best thing you could do is direct them to this blog - it says it all

Anonymous said...

Hi Em, Not bad advice to direct them to the blog..
Telling them of your forthcoming nuptuals would also put a huge smile on their faces.
When I wrote my letter, it poured out as it was just weeks after my transplant.
I know that the family withdrew consent then consented again. When they read your letter and hear your story they will know they made the right decision.

And I am SO jealous of you singing on stage!

Audrey xx

Chris said...

Hi Emily,
I lost my brother in June very unexpectedly, and as such his organs were unsuitable for donation (which was a great shame because this had always been his wish).
If we had, a letter of any kind would have been a very heartwarming thing to recieve. Just to know that someone has had their life changed in the way that yours has would be a wonderful thing.
There wouldn't be a good or bad time for this. Whenever such a letter arrives the raw emotion will be brought back, however it would be a happy emotion.
(For us this came in the form of over £1250 on a justgiving page set up by people we didn't know donating to Great Ormond Street).
I think, as has already been said, this blog is the best way that anyone could discover how much you have changed. I started reading during last years 'emilysanges' appeal and felt so much for the cause I sponsored you on that first visit (this is very unlike me, even by my own admission). The change I have seen/read is amazing and proof that with a positive attitude, you can achieve anything!
Take care!
Chris.