Monday, March 28, 2011

On the buses

In all my years of travelling on Dublin Bus, yesterday was the first time I noted a unicycle in the luggage rack.

Yes, a unicycle.

I surveyed my fellow passengers, trying to work out which of them was the owner of this wonderful vehicle.

I settled on the chap with the long, unkempt hair who had the look of an overgrown adolescent returning from a festival in some muddy field.

My mother would regard anyone with such an appearance as a drop-out. But for all I know, he was returning from a weekend of circus work to reclaim his 9 to 5 capitalist place as a cog in some wheel this Monday morning.

In any case, the nonchalance with which he picked up his unicycle and stepped off the bus, as if it were the most normal thing in the world, made me smile.

There and then I decided that in the future, after transplant, I will always carry around some interesting item with me each day.

A musical instrument, or a set of juggling clubs, or a lacrosse stick.

And I shall wear a flower in my lapel, or a flower in my hair.

Life will be much more colourful then.

Tuesday, March 22, 2011

Fleeing the killer in the sky

Now there comes again the first stirrings of sunnier days ahead. Summer will not leave us waiting much longer, and already, the temperature is up, the wind is taking it a little easier, in truth it is more of a friendly breeze anyway these days.

Sunshine makes me happy. Waking up to it instantly promises something of a better day than might be delivered in cloud or rain. I feel that instant familiar urgency of the eternal child that makes you want to pull your clothes on and race out into anywhere that is outside, terrified you will miss one minute of it.

It seems impossible that I am sick when the sun is shining. That anything could be wrong on a day like this is hard to believe, and I do find it more difficult to take my illness seriously when the weather calls for ice-cream and beer gardens.

The sad truth however is that my relationship with the sun is over. Once transplanted, the rays it emits will be my nemeses, as one of the unfortunate upshots of having a new kidney is that you are left extremely prone to skin cancer when on anti-rejection drugs.

Already, I have been advised to wear sunscreen every day for six months of the year, from March to September, even while on dialysis, and I was told in Beaumont Hospital that there is a “100% chance” I will develop skin cancer if I do not take at least three leaflets' worth of precautions in future.

I did not point out to the highly educated doctor that when the odds reach 100%, you are looking at something of a certainty rather than a chance.

I wonder what it was like to be part of one of those fearless generations who lived at a time when we didn’t know the sun could kill you.

I look at my parents. My mother, blessed with dark skin, has never worn sunscreen in her life, she boasts a tan for months at a time, a shade of healthy bronze which she gets from nothing more than a lick of the sun.

My father was a bit more careful. One favourite image that remains with me is that of him walking through the gates, after a day spent saving hay, a straw hat shielding him from more freckles.

Ah yes, ‘twas not from the wind I took my own fair skin.

They have told me I will never again sunbathe, that even ambling in a hint of a heatwave, weaving my way in and out of shade, will call for long sleeves, a wide-brimmed hat, Factor 50 on any inch of exposed skin.

It’s not that I ever got a tan. The sun largely ignored me, but that pleasure of being blanketed by natural heat is a therapy and a privilege that I will miss.

It’s one of the few glories open to everyone, the poor and the rich alike. It costs nothing to lounge under some splendour and soak up the Vitamin D and the happiness that a cloudless blue sky can invoke.

It costs nothing, but it could cost me my life. In some ways, for all the limitations that are placed on me through this illness, taking away my sunshine is the worst.

Monday, March 21, 2011

And the winner is...

Not me.

Robbed, I was.

They gave the prize to some girl who blogs wonderfully and has done so for years, and who has in recent times, climbed Mount Everest.

I wish I was making that last bit up, but I'm not.

Fortunately, I had rehearsed my Oscar nominee expression of graciousness in defeat in the run-up to the Awards ceremony.

It was ruined somewhat by having to stick my fist in my mouth to stop myself crying out that I climb my own personal mountain each and every day, just staying alive.

I'm nothing if not dramatic. But causing a scene would not have been appropriate, just like throwing my tennis racket at my opponent was never a measured response to defeat on the courts.

As I have admitted to you all before, I do transform into a monster at the mere hint of a competition, but in all seriousness, I didn’t so much mind losing this one.

Annie writes with an effortlessness that I greatly admire, and she also takes the kind of photos that make people and places of this earth seem extraordinary and beautiful. You should read her stuff.

Apart from the Awards, I was also present in Croke Park yesterday to see Mayo lose. One of these days, I will be part of the optimistic contingent there to see them win, and we will spill out onto Jones’ Road, jubilant and giddy, and singing songs of the green and red that have not been heard on the Northside of Dublin since 1951.

It was a weekend that was far too hectic. The sickness is on me today, as a result, and my eyes are not responding to basic commands.

There is but one word for me in such a state, but it is a funny one, which eases my burden somewhat.


Thursday, March 17, 2011

Pop Idle

In the course of the occasional day of work that I manage, I take pleasure in talking to people who know things. Smart people, who answer my calls in offices that are cluttered with books and theses and unfinished papers, whose heads are filled with thoughts that could change the world, or at least make it better.

I interview these people, take shorthand notes, and then help in the process of media that will impart this knowledge to the masses.

(Some call this journalism)

This week, I spoke with an academic who has studied the effects of unemployment, psychologically as well as socially.

He talked me through Year One. How the initial stress and nail-biting over bills and mortgages fades into feelings of depression, of failure. The gradual and growing feeling of becoming invisible.

The back-end of Year One is a watershed, for if Year One becomes Year Two, then the unemployed person is statistically unlikely to ever work again. They are then classed as long-term unemployed. Bye-bye fulfilment, farewell dignity, rest in peace all the hopes and dreams of that fragile human being.

It is not that they are suddenly useless. No, it is because over the months of nothingness, they become the disappointed parent to their own situation; they fill their heads and their sleepless nights with criticisms of how they have let themselves and their families down.

Their confidence is an early casualty, they become depressed, they start staying up late and losing the best part of the day to a lethargy that doesn't lift until noon. They falter their way through a calendar's worth of groundhog days, until they sink into dependency, and then, they stay there.

This conversation was of an enormous amount of interest to me, mostly because the feelings described were familiar.

I asked him to differentiate between levels of damage: the impact of being out of work as a result of this blasted recession VS the impact of not working because you are sick.

He told me all his hefty books would say there should be a world of difference. Being able-bodied and idle should have worse consequences than being unwell and unproductive.

On those weeks when I’m not working, I panic and I give out to myself. I feel like I am wasting my time and wasting what talents I have, though for 29 years, I have struggled to really pinpoint what those talents are.

I can’t give myself a break, and I can’t forgive myself for countless days of contributing nothing, achieving nothing, earning nothing.

The funny thing is, those who know me have made a running joke of my laid-back nature, and my default setting that has always been set to a preference of snoozing or lounging.

It is true my work ethic has improved greatly with illness.

But they paved Paradise and put up a parking lot, and you don’t know what you got, nor what you can be, until it’s gone.

Sunday, March 13, 2011

Our Anniversary

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.

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.