a) died
b) hit my head and suffered from amnesia
c) given up blogging
d) fallen down a hole somewhere (likely, but luckily untrue this time)
e) become a monk
f) run away to mexico to start a new life
I have merely been busy. But found time to disappear off to a little piece of paradise for a week...
Me swimming in paradise, aka Mauritius.
It was beautiful, hot, relaxing and very much needed. And I feel very lucky and refreshed.
Bit of musing because I need to really; apologies for this being a bit deep on a Monday morning but it's been stuck in my head and I really need to get over it, and, well, my blog is my therapist so hear goes.
I've been thinking a lot about this dream coming to an end recently. Just to reassure, there is absolutely no reason for me to be contemplating this - my lungs are behaving exceptionally well - *touches wood half a dozen times* - and I am happy and healthy and very lucky.
I think it's more that it has been triggered by several other things, one of which is reading the blog of this incredible young woman here. Eva is in the end stages of chronic rejection and desperately needs a re-transplant, fast. Please do pop over to her blog and leave her a message as she loves reading them. Advanced warning, she is very poorly and brutally honest. Every time I log onto it I hope hard that I read the message saying she's got her call.
As well as this, my life seems to have structure and a future right now, and perhaps I am scared of following this path which has implications for not this year and possibly not next year but for some time after that. Maybe even after all this time, planning ahead is frightening as it feels almost like I am tempting fate.
Maybe I just feel too lucky. I have been given so much, do I feel spoilt and demanding in wanting more? Am I afraid that my luck will run out? I don't think afraid is the right word actually, rather that the idea of it running out has been something I've been contemplating a lot more recently.
No one is immortal. I guess the threat of rejection is something every transplant patient considers at some time. For some reason, I've got it into my head that because I've not had any so far *touches wood lots of times again* if/when I do, it'll be a biggie. Any logic to that at all? Nope, none whatsoever. I get cross at myself for thinking about it when a) I'm fine and b) it's all a bit self-indulgent. I think by blogging maybe this little black hole of musing might close up.
Those of you who see me on a day-to-day basis know that there's nothing wrong and I'm not down or depressed. Merely a little thoughtful at present. And it's not really the kind of conversation you strike up with someone: "you know this whole transplant thing? Well I've been thinking about when it all comes to an end..." - way to ruin someone's day! But it is something I think about. Now and then. Don't dwell, but think.
What's the answer? There isn't one. No-one knows when their dream will come to an end, it's not something that is only relevant to me, so the only answer is to keep on loving it and making the most of it whilst it shimmmers.
8 comments:
Awesome post. I feel exactly the same. Also because of Eva, and the boy who got my donor's heart has been struggling badly with rejection... also 2 of the patients at our centre died in the last 2 months that I knew. I'm getting married soon, and now it's like someone else's dream too... Don't want it to end!!!!! Also haven't had any rejection yet, so even if I get some acute rejection along the line it'll be a big deal.
I couldn't agree more Emily. We all hope our luck will last - for some it's more of a concern than for others. Well written as ever.
Lindy xxxx
Sounds like you had a fantastic time in Mauritius :D
Thanks for the link to Eva's blog Emily. I've just been having a read of it.
Your blog has got me thinking too. I've lost friends to chronic rejection, so it is something that crosses my mind too. I've also had no rejection to date, but think to myself that the longer I can go without rejection, the less likely I am to get it and hopefully if I do it wont be severe. Not sure if there's any logic in that either, but it helps reassure me.
Moll x x
I check out your blogs every now and then, but its the 1st time i'm leaving a comment. Lol, not as if i have anything extremely profound or amazing to contribute. (Smiles), its just that this piece here seemed to resonate somehow...
I don't have much to say, except yes, acknowledge the fact that it's a different world you live in, and i can far from fully understand the plight or claim to.
But i choose not to comment along that line. I guess i just want to leave a smile, and a hope.
One can't entirely hide from the reality of our life's situations, but we can hope, and hope, and hope, and that hope will make each day worth leaving. I pray you strength most definitely. And most importantly, i pray you a long and fulfilling life.
I'll be around-still reading, frequently commenting. Live one day at a time. And when it hurts, there's a song that says 'its only pain'...
It's constantly on my mind if I'm honest. I don't think there's much we can do except remind ourselves to take things one step at a time.
I don't worry about rejection as such, I more worry about cancers.
We all know that transplant brings along it's own issues but it's worth the risk because it's given us more time. I try to focus on that and just hope with all my heart that we can have more and more of it.
It's inevitable that we'll have days where we think about the implications a little too much but it's better than pretending they don't exist at all.
Hugs, and fab you got to go back to Mauritius!
Audrey xx
My husband is coming up to 5 months post Tx. As we move out of the acute anxiety phase - where frankly everything is scary - and start to enjoy ourselves, we're struggling to deal with the knowledge that this won't last for ever. It really helps to hear other people talk about their fears, as I feel a lot of pressure to be out there having fun without thinking at all about the future. I read your blog while Will was waiting for his lungs and it was really helpful - keep up the writing! We're also blogging: willslungs.blogspot.com. Pop in to relive your early new-lung days!
Happy Birthday!
Love Vikki
I've just read some of Eva's blog for the last couple months before she sadly passed away. So sad, she sounded like a really fun an vibrant person...bless her
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