It was exactly one year ago today that I wrote my first blog post.
I don’t know what exactly I was hoping for through joining this online community of those who write and those who read and the small percentage who comment, but I have been thinking about it in the last few days.
Throughout my teenage and college years, and on into my early twenties, I kept a journal.
“Dear Felicity...”
Each entry was addressed to the same fictitious girl, the girl who embodied everything I wished I could be. I imagined her as beautiful and wise and secure in herself, never awkward, never doubting that she was anything less than flawed but perfect.
I found a number of my journals during a clear-out of my bedroom over the lazy days of Christmas, and happily threw away a few hours, reading back over the pages. I was shocked to find how typically girlie I was in every respect. I laughed at the dramatics, the nights out, the rows, the meltdowns, the declarations of love and hate and life as I knew it being over for the third time since we came back to school from Easter holidays. It amazed me how obsessed I was with boys I thought I was in love with, back when I knew nothing of love at all.
A by-product of my diagnosis three years ago was that I stopped writing my journal. It was one of many routines that I abandoned instantly upon discovering I was sick. The written accounts were no longer required or desired, because I suddenly found myself in a life I didn’t want to lead.
I have a habit of putting down a book if it doesn’t grab me in the first 40 pages, and it was this attitude that I adopted to my journal, circa March 2008. Why continue on with a story that is not granting you any pleasure, even if you are the one writing it rather than one of millions reading it. Same rules apply.
I can of course appreciate now that this was part of my trudge through denial at a time when it felt like every expectation of life I had nourished had been snatched from me.
Starting this blog marked my move towards total acceptance. I know now that this is my reality, this is the life I will lead, and taking ownership of it is all I can do. Finding happiness in it and making it work is my only option; learning to love this life must be my objective; and looking back on all this in years to come will be just as important to my story as reading about that holiday, that victory, that night at that party with that guy.
Limbo has become my shelter from the storm. It is the space I use to feel sad, to feel angry, to express emotions that do not come easily to me in conversation, even with those closest to me. I leave my dramatics on the page here and continue on with the rest of my day, just as I have always done.
So thank you to everyone and anyone who has passed through here in the last twelve months, to all those who have read a little, commented occasionally or a lot, or never commented at all, but taken the time to read a little piece of me.
Let’s hope the next year brings an end to dialysis, and heralds the entrance of the curiosities of a kidney transplant.
PS I have been named as a finalist in the Best Personal Blog category of the Irish Blog Awards 2011. I do not expect to win, but I am most humbled at having made it to the last five. Thank you to those who nominated me – I do not feel worthy. Not one little bit.
Sunday, March 13, 2011
Monday, March 7, 2011
Programme for Government
I know we are expected to be grateful. At least the issue of Organ Donation got a mention down there on Page 38, but regretfully, it is in the least helpful way possible.
Our new government promises to legislate for an Opt-Out system. In the near future, it will be presumed that every person who dies in this country is a consenting organ donor, unless they have actually registered themselves prior to death as being unwilling to donate.
This worries me on several levels. It worries me that our new government did not heed the advice of bodies such as the Irish Kidney Association and others, who pointed out the flaws with this policy.
The statistics show that in other countries, where Opt-Out has been introduced, no discernible difference was made to the rate of transplants.
This has been flagged to all parties in Leinster House on many occasions. Those healthy ones who lobby on behalf of people like me told them all – Opt-Out sounds like a great plan, but it doesn’t work. And it certainly doesn’t work as a standalone piece of legislation.
Yet, they carried on. Now it is enshrined in the blueprint for the next five years of governance.
To put it in context, this would be like addressing the need for increased revenue for the Exchequer by introducing a tax on spaceships, rather than on property. It achieves nothing.
It will obviously increase the number of potential donors – but potential is worthless unless you have the means to transform it into the actual. It is pointless to have potential donors when the environment within which our health service operates is still hopelessly ill-equipped for the harvesting and transplanting of organs.
What we needed in this Programme for Government was a pledge to create a National Transplant Authority; a commitment to install a Donor Coordinator in each of our hospitals around the country.
We don’t need legislation for potential – we need progress towards actual results. We need one staff member in each Intensive Care Unit whose job it is to identify donors, speak with their families and set things in motion. It is that simple.
This is a clumsy move by the new government. It will result in more pressure on ICU nurses, more anger at front-line staff when transplant figures come out and they are dismal, and the media ask the question of why this is so when we now have an Opt-Out system in place.
It will allow the Health Minister of the time to shimmy out of any accusations laid against him, shifting the blame to over-worked and underpaid staff in badly resourced hospitals, which will suffer yet more cuts under this awkward coalition of the right and the left.
Perhaps that was the intention of this government, and if that is the cynical first step of their journey in power, it is of immense concern.
Our new government promises to legislate for an Opt-Out system. In the near future, it will be presumed that every person who dies in this country is a consenting organ donor, unless they have actually registered themselves prior to death as being unwilling to donate.
This worries me on several levels. It worries me that our new government did not heed the advice of bodies such as the Irish Kidney Association and others, who pointed out the flaws with this policy.
The statistics show that in other countries, where Opt-Out has been introduced, no discernible difference was made to the rate of transplants.
This has been flagged to all parties in Leinster House on many occasions. Those healthy ones who lobby on behalf of people like me told them all – Opt-Out sounds like a great plan, but it doesn’t work. And it certainly doesn’t work as a standalone piece of legislation.
Yet, they carried on. Now it is enshrined in the blueprint for the next five years of governance.
To put it in context, this would be like addressing the need for increased revenue for the Exchequer by introducing a tax on spaceships, rather than on property. It achieves nothing.
It will obviously increase the number of potential donors – but potential is worthless unless you have the means to transform it into the actual. It is pointless to have potential donors when the environment within which our health service operates is still hopelessly ill-equipped for the harvesting and transplanting of organs.
What we needed in this Programme for Government was a pledge to create a National Transplant Authority; a commitment to install a Donor Coordinator in each of our hospitals around the country.
We don’t need legislation for potential – we need progress towards actual results. We need one staff member in each Intensive Care Unit whose job it is to identify donors, speak with their families and set things in motion. It is that simple.
This is a clumsy move by the new government. It will result in more pressure on ICU nurses, more anger at front-line staff when transplant figures come out and they are dismal, and the media ask the question of why this is so when we now have an Opt-Out system in place.
It will allow the Health Minister of the time to shimmy out of any accusations laid against him, shifting the blame to over-worked and underpaid staff in badly resourced hospitals, which will suffer yet more cuts under this awkward coalition of the right and the left.
Perhaps that was the intention of this government, and if that is the cynical first step of their journey in power, it is of immense concern.
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