I've recently been thinking about how I portray myself on this blog and wondering if maybe I've been a bit of a fraud. Everything I've put on here is in fact me and things I have done, but I've neglected to share a part of myself that has really made me who I am today. I didn't think this would ever need to be an issue that would come up, but found myself questioning that when a beautiful girl whose blog I have been following for a little while recently passed away. Her name was Eva, and she had cystic fibrosis. Although she was young and vibrant and gave everything she had to making people aware of this disease and seems different to me, we shared a common ailment, I too have cystic fibrosis. Her passing made me question why I have always kept this part of me secret. I didn't like to tell my co-workers and hated having to tell my new boss when she took over the shop 18 months ago. I have never wanted people to think I'm different, to treat me differently, I just want to get on with the job at hand and get on with the job of living.
I have seen many people wait for their second chance at life and never receive that ultimate gift, and I have seen the other side of that when people get that second chance and go and make the best of it. And while my health now is quite good, at some point in the future I too will need someone to offer up that gift, and the more people who are aware of organ donation and make the decision to become an organ donor, the better my, and others, chances will be.
Maybe it's time for me to just take a step back from all that and say, look at all I can do with this disease. My parents were told initially that I probably wouldn't live to see the age of 8. At almost 35 maybe it's time to reflect on that, stop denying this part of myself and look at all I've achieved, and look at all I've still yet to achieve. I'm not looking for sympathy, I just wanted to honour a gorgeous young woman who fought so bravely and made such a difference in her short time on this earth. Maybe by sharing this and making people more aware about an everyday person living with something like this, I too can make a small difference. If you've ever thought about becoming an organ donor, I urge you to at least discuss this with your family and let them know what you want or go here to sign up on the register (In Australia).
If you've got this far, thanks for reading, if you have questions you can leave a message in the comments, I'm happy to answer anything. Once this is out there, there is no going back!
25 comments:
Well done highlighting a topical issue Selina. Sounds like you were very brave doing this post and sharing what has been something very personal for you. I'm proud to have been an organ donor for years and never question my decision. I also understand this is a more complex decision for some but am sure your article will provoke some positive thought and keep it a topical conversation.
Thanks for sharing this. so often you hear about "cystic fibrosis" and it's hard to think about the real people who have real lives. I'm a donor, have been since I first got my license.
I'm a donor. Always and forever. Brave post. I don't judge you for having CF or for not telling us. Big love to you. xxx
Selina, I'm so glad you are doing so well, you are a very lucky lady indeed, and your family is blessed. I know how it is living with something different {albeit not life threatening}, and just wanting to be seen as normal. I think it's very brave of you to share, and bring about awareness. I am and always will be a donor, It's the greatest gift we can give. Continued health to you, thanks for sharing.
Take Care, Carrie
p.s. don't be so hard on yourself, you are so not a fraud in any way. : )
We are sorry to hear you have to deal with something that can be so scary, but thank you for sharing. It certainly helps keep people thinking about ways to help that might otherwise just fly by. I have been an organ donor since the day I got my driver's license and have always been sure to remind my family and loved ones.
xx
Hey Sel... you are in no way a fraud, so don't feel bad that you didn't want to have CF as the focus of your blog. Having said that, I'm really glad to know this about you. Because let's face it, CF is a big deal to live with. It shouldn't define you, or define our response to you, but you can help to educate us about its realities and the perspective it gives you on life.
xx G
Thanks so much for sharing Selina. I appreciate your honesty and courage. May you continue to enjoy a good level of health far into the future.
{{Hugs}} Anita. xxx
I'm already a donor. I had no idea it would benefit people living with CF.
In no way are you a fraud. There is loads about me that I haven't shared in my blog (yet?). Disclosure about ourselves is an organic process... it's not a job application!
Thanks so much for sharing this information. I know very little about CF - but I can appreciate that you're achievements are grand.
Thanks for the link to Eva's blog. I have been sitting here reading back through it for a while now and I can't stop crying.
You are very brave to write this post Selina, but know that it doesn't change anything about the way we think of you and your gorgeous creations. Its your blog and you get to choose what you put in it. You don't have to let it define you but if you choose to you can use it to educate people.
I hope you go on to be really healthy long, long into the future.
And yes, I'm a donor too.
XX
Hi Selina, I just stopped by your blog to have a wee peek and I'm loving your bunnies!
Good on you for sharing, for wanting to honour Eva and make a stance for organ donation. I used to work as a midwife and CF is one of the newborn tests we do. I know a family and both their children have CF - and they seem just like you - they don't want to be defined by it, they just want to get on and live their lives.
And yup, I'm an organ doner on my licence.
I popped over and read a few of Eva's posts...and they made me cry. I'm usually really tough. I don't like to think about ending up like that, even though I know exactly what will happen eventually.
You're very brave for putting yourself out there. It's so hard when you're constantly judged by 'what's wrong with you' rather than 'who you are'. That's the great thing about blogging - you can share only what you want to share. No-one can see what you don't want them to see. It makes you feel like a normal person for once!
Hope you are well and thankyou for sharing.
Cam x
Hey Selina, I totally agree with Kate & Cam and I love that you have shared this with us, strangers in reality but linked via this wonderful world of blog.
you are still Selina, chenille loving, bunny making and sweet and this will not put another label on you.
hugs to you lovely
♥
Hi Selina!! Forget about being a fraud: you are not!! Thanks for sharing, you are very brave! I hope you continue having good health for a long time.
Hugs from Spain,
Silvia
(I'm a donor too)
You are far from being a fraud Selina. While I think it's wonderful that you have shared this with us, not sharing it previously is ok too.... if your anything like me - having a crafty blog is probably like a home away from home IYKWIM?
Stay healthy xxx
PS where can I buy a bunny or teddy if I can't get to handmade heaven?
Selina, you can share whatever you like here, its your blog. This is big share and it must have been a hard decision to do it.
But you are still you !!! Slightly chenille bonkers ,crazy fun Selina !
I knew from the first time I spoke to you and met you that you were a special person. Good on you for making people think about organ donation. This must have been very difficult for you to talk about, but I applaud you and think you have done the right thing. You aint a fraud girl!!! Thanks for sharing Selina xx
Thanks so much for sharing that part of yourself with us. We all hide some parts of our life from the blogging world - But good on you for speaking up on the need for more organ donors - Both hubby and I ahave lected to become organ donors.
Hugs,
Fee XX
Thanks for sharing all this Selina, Knowing about your illness I still read your post with interest knowing it's a brave thing to do, to expose alot of yourself in this way.
Hope you are well.
Miriam
I've come back and read your post again Selina because the first time I was so confronted by my own ignorance that I needed time to do a bit of reading and digest what you've shared here. I can only say I think you are wonderful for overcoming your fears and being so at peace with yourself. I wish I was as far along that journey as you are, so you're certainly an inspiration for me. Thanks again for sharing :) Kx
Very brave Selina. I totally understand trying to find a balance between sharing parts of yourself and all of yourself. I think many of us work through these questions in our blogging.
Good on you for telling your story and using it to educate people at the same time.
Thank you Selina. I feel priviledged to have read your post and feel humbled that you have chosen to share this. XX
Thanks for sharing a little bit more of your life with us here. Blogging is walking a fine line; no one shares everything about themselves, their family, their life. But what we do inadvertently develop by having a blog is a soapbox where we can choose to highlight issues that are important to us. It’s fine that the focus of you blog is your creations and inspiration, it’s also fine that you feel brave and passionate enough about highlighting what you live with to help spread the word about organ donation. I’m sending you lots of positive healthy vibes for maintained strength and health. I hope that I can leave my organs healthy and worthy enough of helping improve someone else’s life when I am finished with them.
Thank you for sharing with us and making people realise the honest truth behind organ donation. My mum was lucky enough to receive a donor organ but for her sadly it came too late. If more people were donors and people like my mum didn't have to wait so long the chance of living a full life would be increased and this would be the ultimate gift you could give.
I have family in simolar situation and friends whose children have cystic fibrosis.. I think bu sharing your story maybe if even one person becomes an argan donor then that would be worth it. Organ donation is very close to my heart! But this is your blog and your space to share what you want to share thats whats fantastic about blogging you decide what is shared...Stay well..x
great post Selina, i don't think that it is necessary to always declare such personal details at the outset. i have serious health issues too but i don't declare them until i am ready because i don't want to be defined by them. good on you for deciding that this is the time and good on you for not allowing yourself to become a woman who suffers with a chronic disease but a woman who lives with it
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