Next year all our troubles will be miles away (I hope)

I won't lie to you. It has been a difficult time.

There are now nine hours of dialysis to endure each night, and once the Christmas of plain turkey, no spuds, no chocolate and no alcohol has passed, I can expect to be increased to ten hours.

My blood results have continued to disappoint. Where once I was largely left alone by my medical people, there are now phone calls. They speak in urgent and sincerely sad tones about how young I am, how careful they need to be with me.

So as I prepare to head home for Christmas tomorrow, it is with a heavy heart. I have had a few meltdowns in recent days, which is unlike me. A lot of finding myself sitting in the dark, a lot of crying.

The extra hour lost to a machine every night has taken what stubborn fight was left in me after two and a half years and almost 1,000 nights of dialysis.

Robbing time from me. Even more time. Seven more hours every week.

I am entirely spent. Emotionally. Kidney disease has taken so much from me. It has chipped away at my physical health, my mental health, my relationships with my family, my relationships with my friends, my career, my plans, my twenties.

I wonder if this is what they do. If they leave you on the transplant list until you reach the point when death is preferable to this horrible existence.

In my case, they are certainly close to succeeding.

The devil's in the diet

It has been a dreary week. Mostly because I was placed on the strictest of diets by my medical people when they caught sight of my blood test results last Tuesday.

No coffee, no chocolate, limited fruit, limited veg, only a drop of milk daily, no potatoes, no chips, no crisps, no sauces, no alcohol, no processed meats, no nuts, no dried fruit, no herbs, absolutely no bananas or avocadoes.

Those were my orders. Which begs the seasonally appropriate question:

Do they know it's christmas time at all?

I went along with it, of course. It was the repetition of the term "we need to keep you safe" by more than one of them that sufficiently frightened me into submission.

The potassium is the thing. It's high right now, and while I can cope with the far-off possibility of a slow, painful death, the fear of going out like a light because of a fatal irregular heart rhythm challenges the rebel in me, quietens my rage against the medical machine.

I'm in the hospital again tomorrow, for repeat tests. If the word back from the lab is no better, there's talk of putting me up to ten hours a night on dialysis.

If that hurdle presents itself, I am looking at 70 hours of treatment each week, and I have to wonder if at that point it might make more sense to consider haemo-dialysis.

Would I not be better off going into the hospital every other day for four hours of dialysis? Could I bear to have a fistula in my arm? Could I live with quitting work, to quietly and finally ceding to this illness for once and for all?

These are all the questions that will await me in the next new year of groundhog waiting-for-transplant days.

For now, I'll settle for improved results tomorrow and being allowed back on one coffee per day.

Happy Christmas Reg.

The creation of a monster

I am thinking about what I want to do after my tranpslant.

Wake up.

That’s first on the list.

Eat, pray, love. That’s what the book which became a major motion picture advises.

Only I won’t be able to eat for fear of the obesity epidemic that is prevalent amongst the post-transplant community.

And only I won’t pray, because I don’t believe. But I will bear an eternal and enduring sense of gratitude for my donor. I will think often of that person, probably at the most significant moments that await me in the coming years. I will live my best life for them as well as for myself.

I will love, and love better than I have of late, because I will be free of the bitterness that currently colours my relationships with my friends; I will also have shaken off the monkey on my back that has made me selfish and unwilling to give too much of myself to my family.

Fly.

This is the year dot again. My new life will be one long holiday. The destinations are lined up in my head. Weekends to start with, not too far from home. Then long-haul. All the way to the other side of the world, to places where dialysis has never even been heard of.

Avoid.

To be free to go out for a walk without my mobile phone. Or be free to not worry about the fact the film is showing in one of the lower floor cinemas in Dundrum where there is no reception. Or decide I just don’t feel like talking to anyone today, so I’m going to turn the damned thing off.

Sleep.

On my tummy. Without being attached to a machine. Once the pain of surgery has passed, this will be my single greatest joy.

Flaunt.

I will be that proud of my scar and that delighted to be without tube, I foresee a lot of flashing and invitations – nay, commands - of “here you, look at my tummy”.

You have been warned.

Out of the mouths of babes

From the time she got her crawling and walking in gear, and the time she could form all the wonder in her mind into words, Grace has toddled down the hallway when I arrive home for a visit, and she has looked at my machine.

She has seen much - as all kids do nowadays - since she was born in a millennium and a decade with more zeros than sense. She knows how to use a mobile phone and a DVD player and an ipod and her favourite toy for a long time was her Peppa Pig laptop.

But this machine was different to her, entirely mysterious, if only for the fact that as far as she was concerned, I was the only person in the whole world who had one.

And when you're 2 years old, you think you want everything that everyone else has.

She has always questioned, and I have tried to frame all of my illness into a simple answer, using the language of a children's television presenter.

I've never been certain that she understood.

But on Saturday, when I planted my machine down as normal, she didn't ask anything. She gave me all the answers.

"That's your machine, Gina. It'll make you feel better, cos you're sick".

Ya. That got me.

I often find it is when other people speak about my situation that I get most upset. My life is what it is, and I live it, but when it is a story to be told by others who love me, I see it all through their eyes and it breaks my heart.

But hearing Grace say it. Well, that was worse somehow. Maybe because I have always liked to think she was one of the few who looked at me like I wasn't ill, like I was whole.

Now she knows too.

Here I am again

Firstly, in case any of you opened this post, expecting to read glad tidings, I'm afraid the return of my words to these pages has not been prompted by a transplant.

Believe me, I wish it was.

I am back because I missed this, and because I have nowhere else to go with what is an increasingly weighty burden. After two and half years of dialysis, I have exhausted the shoulders to cry on, the sympathetic ears of friends who are leaving me behind.

That's not fair. I am letting them go on ahead.

Old news, that's what my plight is. Everywhere around me, friends are moving on and taking exciting turns into new jobs, new chapters of neatly laid-out lives, births and marriages, travels and experiences.

And I stay standing still.

RTÉ.ie Radio 1: Documentary on One - Wanted: Kidney

RTÉ.ie Radio 1: Documentary on One - Wanted: Kidney

The last post & a familiar chorus

I am two years on dialysis today. I wish it was winter, because it is the kind of anniversary that I would like to cloak in darkness. I would rather not have opened the curtains today.

The most relevant statistics now stand as follows:

There have been 728 nights of dialysis (two nights off, with permission from my consultant).

That amounts to 5,824 hours of being attached by a line that runs from my tummy to my machine.

Or 242 full days.

I have carried 1,092 litres of dialysis fluid around in my tummy throughout the daytime hours, and by night a total of 8,736 litres have flowed in and out of my abdomen.

I have gone through (and duly recycled) roughly 3,504 cardboard boxes.

I have taken about 8,000 tablets and 30 energy injections.

I have disposed of about 200 bags of hazardous medical waste.

I have spent 0 nights in hospital

I have now been on the transplant list for 22 months.

The average wait for a new kidney is now something like four years.

Now for the really bad news (not really, really). I have decided to stop writing this blog. I didn’t envisage two years of this when I started, and now there is the fear that I will start to repeat myself, because when you re-live the same routine day in, day out, you inevitably return to the same gripes. There is nothing worse than a writer who recycles old metaphors.

I realise I may be doing a disservice to the few people who read Limbo on a regular basis, and who have hung on in there, waiting for the glad tidings of a new kidney.

To those followers, I offer my sincere apologies, but I also advise that in a few months’ time, if I ever cross your mind, that you imagine me, post-transplant, on a beach somewhere - albeit covered from head to toe in Factor 50 - but sipping some exotic cocktail, and enjoying my freedom, released from the infernal groundhog day that is peritoneal dialysis.

Regina xxoxx

Must remember to keep waiting

In this ordered society, you have areas for waiting. You have receptions with pleasant faces and practised phone voices; lobbies with comfortable chairs and air conditioning; a seat or a bench outside the headmaster’s office; actual waiting rooms where you flick through outdated magazines before seeing the doctor or dentist.

I like this form of waiting. The setting of a holding area, and then the crossing of a threshold, and the meeting or appointment plays out.

But what if you are all the time waiting? While you’re eating, while you’re shopping, while you’re sleeping, while you’re carefully painting your toenails. Is that waiting at all? There is no specific activity to it, no area in which it is confined or where it happens. In such circumstances, it’s easy to forget.

I compare it to being stood at a bus stop for a long time; minutes turn to hours and you stop looking up the road, in the direction from which the bus should be coming, and you get distracted. You start looking around, and you get caught up in the life around you.

You are only jolted back to remembering when you try to move too far away from where you are stood, and you realise you are chained to the bus stop, bound to this need to wait.

At night, the fear comes to me. I think about getting the call, and my heart starts pounding. The magnitude of it overwhelms me. Some night, I will have to get up and organise my thoughts and carry myself to the hospital, and phone my mother in short, ill-controlled breaths to tell her it’s happening, and then sign my life into the hands of a surgeon and undergo a major surgery. Just like that.

I’m sure I have written before about the devil I know in the form of dialysis often seeming to me like a sanctuary. I know the deal here. It’s not a great scene, but I’m managing. When they plant a foreign organ in me, there’s no knowing how my body will react.

It’ll be a matter of luck, whether my immune system will treat my new kidney as a burglar in the dark, or whether it will regard it as I regard another girl on the other side of the street if I’m walking home at night – a stranger, but a welcome, comforting presence, a support if anything were to happen.

After nearly two years of waiting, I feel totally unprepared. I wonder if I should put some elbow grease to this now, if I should start setting aside some period of each day…for a mood of expectation. To translate waiting into action, maybe you wish or hope or conjure images.

Perhaps if I put an uncomfortable chair in my hallway – that might be the place for it.

Garret Fitzgerald RIP

The one and only time I ever drank a cup of tea was in the company of Garret Fitzgerald.

I was sat in his house, in the room reserved for his thinking and writing time. It was the most chaotic space imaginable, filled with books and papers, plants which appeared to be growing out of the walls and out of nowhere at all.

It reminded me instantly of the film, Jumanji.

I think it must be what the inside of his head looked like too, an expanse of clutter that looked too busy for potential, but out which there came brilliance in various forms.

He had agreed to help me out with my thesis, and he patiently answered all of my questions, which I’m sure were predictable and inane. He spoke about his wife giving him a haircut before his first day in the Dail, and how he didn't like it when they called him "scruffy". Bertie was scruffy, he said, I was just untidy.

I sipped at the tea, and he continued on. Raced on, in fact, but that was his way, hurrying through each sentence as though his words were chasing each other.

Years later, we met again. We were both guests on Tonight with Vincent Browne, back when VB was still on Radio 1 late at night. I spoke about the subject that I knew well, and then I shut up. A verbal paralysis overcame me. As if there was anything I could add to a general discussion about the world that would be equal to a contribution from Dr Fitzgerald.

The second last time I saw him was at a debate in UCD. He was there with Jeffrey Donaldson, discussing the history of the relationship between Ireland and Britain.

I remember our rather youthful lecturer, from Northern Ireland, being shocked at the rapturous reception Garret received from the congregation of students. The lecturer pointed out that none of us were actually old enough to remember Garret as Taoiseach.

That was true, but I have often been told that when I was a baby I used to cry when Charlie Haughey came on the television. Garret the Good had the opposite effect.

I saw him last on March 9th, on the day when Enda Kenny was installed as Taoiseach and Fine Gael entered Dail Eireann with their massive majority. Garret was making his way around Leinster House, walking gingerly with the aid of a stick, chatting to everyone, but mostly just observing, and smiling.

Nobody would begrudge him the smug look he wore that day. I caught his eye on the grand staircase, and there was the peculiar glint of the political animal. For all the cynicism that must grow through a lifetime in politics, there is still a wonder about the world that keeps the politician young and in some degree of awe at the theatre, the power, the history of it all.

Today, Garret is the talk of the town, upstaging the queen. His last great gift to Anglo-Irish relations.

The Calvinists Rocked in '96

School meant nothing to me in the September days of the year 1996. In a disconcerting reaction to the events of the summer holidays, I was reluctant to return to the classroom.

That had never happened before. The weeks before classes recommenced were generally all about picking pretty pens and notebooks and looking through the new books, in unashamed, nerdish anticipation.

The apathy of that term was lifted only with one particular history class that brought me back to my learning. In studying the Reformation, we were introduced to the Calvinists, and I liked the cut of their jib.

Specifically, I liked the idea of Pre-Destination, which lay at the heart of their doctrine - the idea that before each human is born, their life is laid out, their course is already set, and the day of their death has already been programmed by god.

This brought me great comfort, because all at once the events of the August 8th just past made some sense to me. It was reassuring to think my Dad had died on a day that had been determined long ago, that he was taken because that was simply the plan.

I think about Pre-Destination a lot nowadays, and how it fits with my own circumstances. That was a revelation, the day it dawned on me that without the intervention of modern medicine, I would have died at some point in Summer/Autumn 2008.

Was that my time to go?

Maybe it was. I have always joked that I peaked too soon in life. I experienced and lived with loss as a teenager, I knew certain grown-up responsibilities and worries at a young age, I had success earlier than others.

Let’s say, (for the sake of my 96th blog post, bearing in mind that my material is becoming increasingly scant), that I was meant to die in August 2008. By that point, I had written and published a book; I had worked as a journalist with some degree of success; fallen in love; fallen out of love; lived for a time in America; seen sunsets and danced ‘til dawn; gotten drunk; tried smoking; tried some drugs; I had mourned and had known days of celebration; I had worn a cap and gown; had paid taxes and passed my driving test; I had walked the sand of several beaches on the shores of the Atlantic, the Adriatic and the Pacific; I had appeared on television and radio; had learned enough to know enough.

A life lived, really.

Then there is the reality of the last three or so years, and the person I have been in that time. I have felt lost. I have behaved badly, lost interest in most areas of life, lost ambition to pursue any kind of career, and have been unrecognisable at times, even to myself. I have definitely become harder, less kind, less sure of what is right and wrong, with less regard for the rules I have followed since I was young.

You might say all of this was a reaction to being diagnosed. But what if it wasn’t? What if all of this is because I’m not supposed to even be here at this stage?

Perhaps I am lost, simply because there was no path charted for me past some unknown date in 2008.

Perhaps I have outstayed my welcome in this world, and just like the house guest that doesn’t know when to go home, the conversation has lulled, things are strained, and the atmosphere is increasingly tense.

My left hand

I always fear a progression of my illness. I await it, in fact. You may call me a pessimist, but it’s just been that class of a life thus far.

I am conscious of the fact that I have escaped fairly lightly in dialysis terms. I have had no real, or at least no prolonged loss of appetite, so I don’t bear the...defined bone structure...that marks some of my fellow D patients. I have not had to spend any time in hospital, have managed to keep myself infection-free, and have had no difficulties with the tube inside my tummy.

It’s all going swimmingly, so I am prepared for the inevitable tragic twist that will no doubt hurtle in my direction one fine day soon.

I thought that day had arrived this week, when some odd looking blisters appeared on my left hand. To my increasingly forgetful mind, it seemed these blisters came from nowhere. They began as an itchy patch on the index finger, and painfully bubbled their way above the skin.

Aside from enjoying showing them off, in the same way I spent most of my childhood flaunting cuts and scrapes and scabs, I did genuinely worry that my condition had moved up a gear.

I visualised a gradual spread of Wicked Witch of the West type boils across my body, and wondered whether I should go straight to see the consultant.

Then I remembered an ‘ouch’ moment from last weekend. Getting ready to head to the Races for the day, I was in too much of a rush to give due note to the sensation of pain.

Had I paused, I would have allowed my brain to register the contact between my finger and my hair straighteners.

Panic over, but still. Ouch.

The replacement

Brendan has been taken away for his service. He needs a little TLC from his makers, a holiday, a few nights away from life-saving.

The lucky bastard. No such break from this toil for me.

His lights stopped working a while back, no doubt from the numerous car journeys I insist on bringing him on.

I don’t believe the dialysis machine was made for traipsing around rural Irish roads in the boot of my stupid car, which has a suspension that buckles at the sight of a pothole.

I now have a substitute in place in my home, and I like him even less. He is older, noisier, more obnoxious in the night-time hours.

He is probably a cantankerous old uncle to Brendan’s youthful boyishness. He has no time for my hasty set-up practices, the shortcuts I increasingly take, my strolling in home at 2am, with a tummy full of toxins mixed with vodka.

I feel the need to treat him as we did sub teachers back in the schooldays. With derision. You’ll note I’ve not even given him a name, and I name most objects in my possession.

But as with Brendan, and as with sub teachers, he will win all of our battles. I will return to him night after night, to curse him, and hate him, but knowing I need him.

Like a good little puppet on a string.

The climb

It was one anomaly that I felt the need to rectify.

An anomaly that is specific to my place of birth. I have looked upon this mountain all my life, from the first days that I was old enough to observe the world around me from my bedroom window.

Croagh Patrick, that's what they call it. Named after our patron saint, who is said to have climbed it, and spent 40 days and nights at the summit. The nut job.

I have several monkeys on my back these days, lists upon lists in my bedtime head, of things I must accomplish and challenges I must meet. Because, you see, I am aware now of my mortality, and I do not wish to be tortured by any regrets on my death bed.

So the brother and I turned pilgrim on Easter Sunday, and we set off at the pace set by him - the older, the fitter and the healthier of the two of us. It has always been so, on every adventure. He in the lead, me trailing behind.

Going up was tough, but satisfying in that way that a gruelling physical effort can be. The reward came with the view from the top, across Clew Bay on a glorious afternoon.

Coming down was the real challenge. There is the feeling always that if you begin to fall, you won’t be able to stop yourself, and you will roll until something hard breaks your fall and knocks the stuffing out of you.

But then, the idea is that this climb is a penance. It is supposed to punish the spirit in some way, draw out the badness, exorcise the demons that you carry in the form of sins committed, and lies told.

I had 29 years of bad stuff for which I had to repent. Rather efficiently, I sorted the lot of it in the three and a half hours it took to get up and down, and the further two days it took for my legs to stop aching.

There is the satisfaction now that the mountain has been conquered.

I won’t ever climb it again. That was my day. When I get my new kidney, I’ll not be bringing it near any rocks or hard places.

Ignorance and Bliss

It is only common decency – and a vague fear of the defamation laws – that has kept me from writing frequent notes and thoughts on my medical people up to this point.

But today, there’s the feeling of a rebellion rising. Indulge me, please.

In all honesty, I have been extremely fortunate when it comes to the doctors and nurses who have dealt with my useless body thus far. I have encountered no attitude problems or snobbery with my consultants; only one junior doctor whose hands began to shake once he picked up a needle; no lack of sympathy when it was needed most; and no lectures on my decision to continue drinking Diet Coke, even though it'll kill me, or whatever.

Most I have encountered have a reasonably pleasant and sunny disposition, despite working for the HSE, and in some cases, not getting paid for their lunch hour (that refers to the dialysis nurses).

There remain however some immovable barriers in my relationship with these people. For all the study they have done, all the theses they have collectively compiled, conferences they have attended, and lively after-dinner discussions with colleagues about the merits and disadvantages of dialysis, there is no escaping one true fact.

They still have no idea how I feel.

Ignorant to all that comes with this sorry mess – the drain pain, that oh so unique sensation that comes with having a machine try to suck every last drop of fluid from your tummy; the exhaustion that descends at around this time every day; the reflective pain in the shoulders after a manual; the nausea that swells inside you some mornings when your last fill goes in for the day, and the fluid settles around your insides, making you feel sea sick while on solid ground.

For the medical people, my story, and the story of every one of their patients is the stuff of academia and records and statistics that aid in the accumulation of research grants.

It’s a strange conversation that goes on in the clinical environment, between the medic and the patient. Both experts in their own way, one through familiarity with the textbook cases, the other through the personal experience of their own broken body.

They know so much, but they fail to understand so often.

Like yesterday, when a kind nurse, in the course of a chat, wrecked the sunniest day of the year so far, by telling me the average wait for a kidney transplant in this country is really now 4 years.

Not two years, as I was told when I was listed in August 2009.

She said there is a debate ongoing in the Irish nephrology network at present, as to whether they should break this news to patients, whether it is better for them to have the hope of a shorter waiting time, or whether giving them a false sense of optimism will just lead to depression when the years drag on and they fail to get that call.

She pondered this, as though forgetting that I was one such patient.

And to be honest, I’d rather not have known.

How to solve a problem like Brendan?

The truth of it comes down to this - I am embarrassed by my illness. I am ashamed of it, and what it means.

Darwin has affected me deeply. Clearly. I regard my useless kidneys as a grand signature of my failure as a human being. The fittest around me are thriving and surviving, and I am a genetically inferior one, not worthy of the human race.

I feel it is a deeply unattractive burden that I now carry, this failure to be healthy, to glow with some radiance of youth and be living recklessly rather than existing cautiously.

It is for all of these reasons that I find it difficult to tell people that I am sick. Because I look relatively normal, and thanks to the advances of cosmetics and almost two years of learning how to cleverly disguise my tummy, I don’t necessarily have to confess anything to anyone.

But then what if there comes along a someone?

My female friends on dialysis share my general reluctance for relationships. It presents too awkward a conversation. It is difficult to plume your feathers and possess the confidence that defines attraction when you are conscious of the disaster zone that occupies your mid-riff.

And yet, and yet, and yet...

The logical ones out there will point to the obvious - that none of us are getting any younger. The medical people tell us we should not put our lives on hold while waiting for transplant. Friends tell us we are wonderful and that we deserve to love and be loved.

Last week, I was faced with all of this in the form of one massive Friday night dilemma. So I minimised. I said “I’m waiting for a transplant, it’s no big deal.” I didn’t mention my dialysis machine, or the fact that I have a tube in my tummy.

If he sticks around, he’ll get to see both. Lucky guy.

Admittedly, for all the worry over the giant elephant on my side of the beer-stained table, there was still the giddy happiness of a first date. Oh, the glorious normality of it all.

Who knows where it will go, and whether it will go.

But I realise there is little hope for any love in my life unless I can find the words to introduce the someone to this complicated world of mine.

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.

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.

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.

Banjaxed.

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.

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.

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.

Mayo, God Help Us

It always strikes me as typical of the man he was, the days my dad chooses to visit me.

They are often moments illuminated by limelight, as he was one of those who was drawn to an audience. I sometimes wonder if this was because he was an only child, and because he was entirely alone in the world at the age of 15, by which time both his parents had died. Maybe his showmanship was born of nothing more than loneliness; the strange sense of comfort that he drew from being part of a crowd; the sense of family that he found as a member of a committee, an association, a staff.

He comes to me on match days, when I remember Sundays in September from my childhood; the odd occasion back then when Mayo would make it to Croke Park. He would leave at dawn, to get the train. Arrive back to us late, waking us up with some little presents, with stories of who he met, what Dublin was like and his analysis of where the match went wrong.

Like many of his generation, he regarded the wearing of a GAA jersey off the playing pitch, and for the purposes of showing support, as a form of hooliganism. An outing to Dublin - be it for a medical appointment, a meeting or a match - required the wearing of a suit and the carrying of an overcoat, for as he told us often, it’s a wise man that carries his coat on a fine day.

He comes to me too at election time. He brought me to my first election count in the Traveller’s Friend Hotel when I was 4 years old. It is because of him that I actually understand the PR-STV system, that I revel in talk of transfers, and the excitement of the day when democracy delivers us the process by which we declare some victors, many others losers.

He loved the circus that was created around politics, but there was also a deep desire in him to see the west of the country and the farming community properly represented.

I remember hearing some interviews he did on local radio replayed in the days after he died. Speaking on the level of knowledge that most Dublin politicians had on matters agricultural, I believe his response was "they wouldn't know the front of a sheep from the back of an ass."

Whatever you may think of Enda Kenny, do not underestimate the difference it will make to the county to now boast that the Taoiseach is from down the road in Castlebar.

It's not as good as an All-Ireland, but it is something, it promises much, and in terms of euphoria, weeping old-timers and bonfires around the parish pump, it has already delivered in spades.

Does this make me a Twit?

I have joined the twitter.

I'm not entirely sure why, but I blame boredom and an increasing reliance on social networking to feed my need for constant attention.

I also thought it would be the handiest means by which I could inform people of major events - such as, oh, I don't know, maybe a certain call from a certain hospital for a certain major surgery.

If I was really into the twitter, I'd probably call it a 'twansplant'.

If you click on the button over there on the right, you'll see my tweets. As far as I know, you can look at them without signing up to the twitter yourself - if you want to be able to reply to a tweet however, then you have to have an account.

Thank you.

My review of a cinema outing

My friend suggested we go see ‘Never Let Me Go’ last weekend.

We had both loved the book, grim and unsettling, but brilliant for its writing and its sinister prescription for solving organ failure.

I should have known. I should have realised that Hollywood would take the detached narrative of the book, condense it into a chorus line of sadness and present it in feature film length, until it extracted tears.

At least 15 people walked out during the viewing I went to in Cineworld the other night. They were mostly couples, who mistakenly thought this would be some kind of heart-warming love story that would aid their efforts at pretending they were happy on Valentine’s Day.

It’s no such thing. It brings us back to the time when transplantation made its appearance on the medical stage. A breakthrough, no less. The response was to spawn a new population of humans, created and raised for the sole purpose of providing organs to those who are sick. It was accepted practice in this make-believe world, enshrined in government policy, without the conscience of a needy society suffering even a sleepless night over it.

When these innocent children have grown up and donated all they can, they don’t die. In their sad language where life is not a series of experiences, but a process, they “complete”.

The man behind the story, Kazuo Ishiguro, was born in Japan, a country where organ donation was outlawed entirely up until the last decade or so. Living in such a place provided the debate and the twisted fodder for such gross imaginings.

So many scenes moved my cold heart. The realisation of Kathy at the end that the lives of donors are not so different to the lives of those whom they save; that they all go through something they don’t really understand, and they all die in the end.

The dark moment where Tommy, realising there is no hope for him, stands on a lonely road and screams at the world.

Seeing Keira Knightey, her hands and arms bruised, much like my own after a stay in hospital or increasingly after routine blood tests have punctured my tired veins at various points, needles being moved around under the skin to try and coax some blood out.

It is on my mind more and more that I am going to be sick forever. Even with transplant, I will be tested constantly, on medication always, worried and worried and worried at every bug, every high temperature, every drop or gain in weight.

It exhausts me to think of the road ahead, like considering a long haul journey with stopovers in unpleasant places.

On the upside, this was a role Knightley was born to play. It suited her waif-like figure to fade away and flatline on screen.

I was not the better for having seen it. I cried in there, cried in the bathroom afterwards, and sat in a daze on the bus home.

The only film to have drawn such emotion from me was E.T. which I saw on the telly when I was 8 years old. I still don't understand why he had to go home.

Happy Day

There were three wishes made.

The gathering last week was to celebrate the engagement of him to her, and it coincided with a birthday that he wanted to keep quiet.

The scene at the dinner table - three opposite three. On this side, in by the fire and away from the cold, there sat the dialysis crew. Me, him and another.

Across the way, his fiancée, still getting used to her title, and two good friends down through years of the happy and the sad.

The cake was brought out and the song sung badly. He blew out the candle, for it was his special night, but being the way he is, he thought of us too.

The tea light on the table was used to set the wick aglow again, and it was passed along.

His fellow hostages of the same misfortune duly took their moment, registered their wish, and exhaled a laboured breath from bodies broken.

Bad luck to tell anybody what you wished for, but easy to know that on this night, with these three, the same request was made in triplicate.

No more thought was given to it. Until last night, when he got the call.

He has just come out of surgery. Transplant done. His wish fulfilled.

State of the Nation Address

In my annual effort at raising awareness of organ donation, I made an appearance on the Tubridy Show on 2FM yesterday.

I think it went well. The researcher on the show woke me when she rang to ask if I would come on. I think this made for better radio, as I am an angry beast when roused from my sleep in any event, not to mind when I am roused for the purpose of talking about dialysis

Go here if you want to download the podcast or just play the interview on your computer thing.

Much obliged.

Betrayed by this country

Please read this article and await my wrath:

I cannot believe this.

No. It's truer to say I wish I didn't know this.

Of all the fucking irresponsible behaviours of the HSE. In the past, they have displayed gross incompetence, but this? This is just carelessness, this says they just can't be bothered.

Making an effort to procure organs should be a requirement of their work. When somebody collides with their fate in tragic circumstances and is brought to hospital; once the medics have fought like hell to save their lives, once death is declared, for those doctors and nurses the next thought should be contacting a transplant coordinator.

Somebody needs to have that conversation with a bereaved family, to find them in their darkest hour, and in the most gentle and hushed tones try to show them this little light that is embodied in me and hundreds like me.

To explain to them that there are hundreds of people waiting for a special call, and that through this devastating upheaval in their family, they today find themselves with the power to save a number of lives.

I maintain enough faith in humanity to believe that the reaction from a good percentage of those bereaved would be positive, that they would see an opportunity to salvage some good from this tragedy.

The figures makes me feel stupid. Here we all are, going around trying to encourage people to carry organ donor cards. Ha. Why should we bother? It's a waste of an effort, a waste of precious energy that I don't have in good supply.

Evidently there is no interest in the hospitals in helping us out. We can create all the awareness in the world, but we can't start chasing ambulances.

It sickens me to think of all the organs that have gone. Think of it like this, reader - think if you were stranded in a desert and all the water bottles had been buried on you. Think if you were in desperate need of food and all around you they were setting fire to hamburgers.

If I feel a desperation over it, how must the others feel? Those who are waiting for hearts or lungs or livers, who have an end date that beckons to them, without a treatment like dialysis to sustain their sick bodies. For them, this recklessness is the worst kind of betrayal.

Are our lives worth so little? I am 28 years old. I am educated and I want to be something, to contribute something, but my society has evidently decided I am not worth the bother.

When I was listed for transplant in August 2009, they told me I would probably wait two years for a kidney. Suddenly that seems so optimistic.

Fuck this.

Woeful Sunday

I had two drinks last night.

Actually, I’m not sure I even finished the second one.

Result?

I awoke at midday feeling like the night had been passed somewhere south of Nevada, surrounded by cacti and on that side of the Mojave that is short on oases.

Mouth parched, eyes prickly and reluctant to address the cruelty of daylight.

Some air, I thought. That will provide the antidote that I can no longer seek in the beauty of painkillers and the power of limitless fluids.

Oh, what a mistake. The motion of constant movement, the scents of hedge-rows and car fumes and unhygenic dogs, all serving to make my delicate stomach even more uneasy.

The key to not puking is distraction. I considered which was the more acceptable – to throw up on the sidewalk and make it the city’s problem, or throw up in an individual’s garden/driveway, and risk being impolite to that one householder.

I'm still torn on that one.

I made it around the block to the shop. Solid food was required, but oh mercy, the smells from the deli counter. I took three steps back, and shouted out my order from a distance.

Deli girl gave the most unsubtle of eyeball rolls to her colleague. She should have been thanking me for saving her a lunch break of mopping up sick from the tiles around her station.

Holding the food at arm’s length, I managed the remainder of the journey home and forced the overdue soakage down.

It solved the queasiness.

I kept my eyes open long enough to watch the Greens’ press conference and to experience an embarrassing level of excitement at the thought of an imminent general election.

‘Tis no wonder the teachers called me "a bad mixer" as a child.

Back in bed at 4pm for a nap. Up again at 4.10pm, imagining even more dastardly methods by which I could exterminate the childer-beasts in my estate. We were never that loud when we were small. Barney has a lot to answer for. Drawing his dinosaur distinction between indoor and outdoor voices.

I can’t even class this as a hangover. To do so would be a gross insult to alcohol and would require the invention of a new category of drinker, further down the scale from the much-maligned ‘lightweight’.

Maybe they’d call it a hangunder.

Maybe they’d just call it pathetic.

On feeling poorly

It has not been my finest hour. These past few weeks I have been reckless, sleeping on the job - the job being dialysis and my duty being to watch my step each and every day because the divide between my life and death is not half wide enough.

The warning signs were trying to catch my attention, but I just wandered along, like one of Enid Blyton’s more challenged characters heading for a picnic in a minefield on what promises to be a thundery day.

My weight was dropping. Somewhere between the turkey dinner of last month and the world returning to work, I shed about five pounds. Another week on, and my scales was registering the lowest weight I have been in my adult life.

There were headaches too. They could have been put down to the remnants of a cold that would not go away, but the blood pressure machine poked a gaping hole in that theory. Last weekend, it hit 160/110.

My heart rate joined in. It went up to 115. Beating almost twice every second, the same way it would if I were distressed or terrified.

Not easy to sleep when your body is gone into fight or flight mode. So exhaustion also made a late entrance.

But all of these things can be ignored if you put the mind over the matter. Which is what I did, because no matter what else was going on, I simply had to make it into the place that offered paid employment every day.

When the work is casual and your bank balance is as limp as mine, you can no longer entertain sickness. You act at being able and willing and twice as enthusiastic as the person beside you.

But then the throwing up started and my vision became blurry and I started to feel a little shaky in the shower or when I moved from sitting to standing or even when I was just walking around the office.

I was having to get up half an hour earlier than necessary for work because I would need to set aside time for vomiting. That’s just not practical.

After several phone calls, progress of all sorts was made. I broke up with my consultant. The one who delivered the news of my kidney disease almost three years ago, way over there in the city that God chose as the location to test me.

It was all “it’s not you, it’s me...our long distance relationship just isn’t working...I need someone who can be there for me”.

He took it well in fairness. Referred me on to the woman who will bring me the rest of the way, to transplant and the new life beyond. Having heard my symptoms, she agreed to clear a lunchtime to see me. The tests were done and she had three guesses about what was wrong.

I like this woman. I like her proactive approach. She made changes to medication, changes to my dialysis regime. She took me off my energy injection but I will forgive her for this in time.

The worst of the symptoms are gone. My weight is slowly creeping back up and my face is filling out again. I am back to my usual throwing up routine.

I must not take my eye off the road ahead again. It’s that kind of recklessness that sank the Titanic. And I can’t swim.

At a Glance

The story took but a few seconds. It was there, waiting to be told, in my rearview mirror.

The glance behind as I leave is a given. Perhaps I do it out of superstition. Perhaps I do it...just in case. I did it on Sunday for all the usual reasons and then some, probably borne out the sentimentality of the season.

In those moments, I noted the changes. A decade’s worth of them. Changes which I have not perceived when looking at her full on, but which could not be denied from the angle that allows for looking back over your shoulder. Slower on her feet as she shuffles back into the yard, her shoulders struggling for posture under a head full of worries that I know are all centred on my situation.

I felt the reversal of our roles keenly in the days of the Christmas just past. She helping me, rather than the other way around. We had enjoyed a fleeting period when I held the strength, the ability and the energy – when my youth relieved her from a lifetime of toil.

Now we have upset the natural order. She asks nothing of me. She implores me to rest, to stay in from the cold, to leave any lifting of my machine or of shopping bags to my brother. I woke each morning to the sound of her taking out ashes, carrying in fuel for the fires and preparing food - chores that should fall to me, while she sleeps and dreams to an hour befitting of a grandmother.

She doesn’t complain. She carries me, just as she has done since the day she brought me home from the hospital. The baby girl she always wanted.