Wednesday, December 29, 2010

And so that was Christmas

The reverse psychology performed by the weather was all that was required to put paid to my anti-buzz. It was rolled out in the following steps:

1. At the start of Christmas week, plant seed of foreboding that the roads will be too bad for travel

2. Capitalise on fear from Step 1 (best achieved by making car slide on short journeys)

3. Add some more snow

4. Place weather at the top of every news bulletin every day

5. Close all airports

6. Hype up warnings to motorists of “treacherous” conditions

7. Repeat the word “treacherous” again. And again. And again.


By the time we got to the eve of Christmas Eve, I was suitably terrified that I would be stranded in Dublin. There were flashes presented by the Ghost of Christmas Short-Term Future – Regina alone in her apartment with a pizza for dinner and the warring factions next door for company on the 25th.

It did the trick. Dragged me out of the doldrums into which I had readily slumped for the early weeks of December. It made me determined and fearless of the nasty roads, and most importantly it restored some of the giddy spirit that I have long since enjoyed at this wonderful time of the year.

And so the five-hour car journey was undertaken with the suitable attitude. Slow and steady. It will be worth it. Just keep flicking radio stations to find Driving Home for Christmas. No matter what, I need to get home. It has been a rough few weeks at the end of a rough year, and what else is there to do now, but run away home to mammy.

The happiness on arrival was off the scale and it lasted through to Christmas Day, despite the problems brought on by the freezing conditions. No water. No central heating. But look outside. How beautiful is that view, dazzling the eyes, replacing the forty shades I have looked upon since forever with one splash of heaven’s own brand of brilliant white.




Admittedly, the lack of water did create some difficulty for my hand-washing. But that’s the nice thing about coming home. There are people here to help, perched on either side of the sink, throwing bottled water over my Hibiscrubbed hands.

Everything on Christmas Day was as it has been for several, drama-free years now. There was the new baby in the family to behold, but aside from that, there was O Holy Night at Mass, Mid West Radio in the background as dinner was prepared and my mother reciting her same seventeen-verse poems about various emigrants who only returned home to Ireland after their own mother had died.

Now there comes a New Year. I have a paralysing fear of the song Auld Lang Syne and must thus avoid any gatherings on New Year’s Eve. The lyrics make me feel intensely suicidal.

But the promise that Saturday brings; the shiny, new feel of the first day of the first month of 2011; the slate wiped clean. That makes me feel happy. It also makes me feel hopeful that there will be better times ahead.

Enough of 2010 now.

Good riddance to it.

Monday, December 20, 2010

The War Next Door

There are nights when I can’t sleep. Too many in the last while, but that is down to other matters outside of what I like to call “the science bit” of my life.

The insomniac dialysis patient has few options for the slow hours that follow after midnight. You can’t go out for some air or wander about the house very much, because you are attached to your machine, and for those eight hours of treatment, your world is bound and limited to however far your patient line can stretch.

One can only spend so much time reading, so when any other night-time distraction comes along, it is a blessing. Like last night, when the couple next door got into a massive fight.

I have been following the difficult relationship of this couple for the last year or so, because everyone loves to eavesdrop, especially on a good row. Once the shouting starts, I drag my pillow into the hall, sit down and listen to the sad song of their broken strings.

It surprises me that they are still together. While I would like to think it is because they are very much in love, I fear they are one of those twosomes who are a couple of habit rather than by any design of Cupid’s arrow.

The woman in this couple fascinates me. She has a voice that sounds like it was honed since the day of her birth for extensive nagging. It is the kind of voice that scratches at you, that travels through the wall that separates our living spaces with a clarity that confounds me. Having never actually seen her, I admit in my mind, she has manifest herself in the likeness of the Wicked Witch of the West.

For many months, the voice and the image automatically had me taking the side of her boyfriend, he being in possession of a more dulcet intonation.

But recently, I have developed some sympathy for the girl. She is plagued by that brand of insecurity that hampers the relationships of many females in an era when it’s becoming more and more difficult to look perfect and be perfect. She accuses him of flirting with other girls and of not finding her attractive anymore.

She has made the mistake of believing that by stating her fears, she will be gifted the reassurance she craves, and has also made the mistake of believing she can make this man love her in the way she wants and needs to be loved.

This saddens me. While he may accede to her demands that he call her more often, or check with her before he makes plans, or include her in his view of the future, I always wonder how she can count these small steps as victories. To nag him into submission; to berate him until he agrees and responds. Is that any achievement at all?

But don’t feel too sorry for this guy. He too is guilty. He is a cocky man, sure of himself and of his hold on this woman, and he has his own demands. He speaks about the way she dresses - that she doesn’t make enough of an effort. He has even in the past criticised her for not shaving her legs.

He is one of those guys who is not grateful for the love in his life, but who concentrates on the dressings and accessories. He is arrogant enough to spend his time commenting on how well-kept and socially acceptable his partner is, rather than appreciating her, protecting her and being proud of her. Too caught up with making comparisons and casting insults, he does not deserve to have a hand to hold.

It is difficult to see a future for my couple next door. But what do I know? I’m just the single girl on the other side of the wall, attached to a machine to stay alive and passing time until I grow tired enough for sleep and escape from another day.

Saturday, December 11, 2010

Letter to Santa

Santa Claus,
The North Pole.

Dear Santa,

I haven’t written you for many years, because somewhere between James Bond Junior and Sweet Valley High, I stopped believing.

I remember the first Christmas I didn’t write and you didn’t stop by. In my mind’s retrospective eye, that year, Christmas was toned down from the most beautiful and bright of colours to an unwelcome grey, and smothered with a feeling of being hard done by.

Since then, there have been good and bad years. I re-adjusted my expectations to the more adult setting and made do with versions of cheer, no longer in the form of the imaginings of reindeer on the roof, but in the form of nights out and good food and proper ‘Charlie & the Chocolate Factory’ on the television.

This year, I am allowing myself the indulgence of childhood hope. I want to believe in something again, and so I am starting with you. Of all the things I have believed in throughout my life – the love of my family, my own personal strength and every storyline in Home & Away – nothing ever brought me so much joy as my belief in you.

I am not expecting you to leave anything under the tree for me on Christmas Eve - you have enough little people to tend to in the world. But I am asking that sometime between now and close of business on Christmas Day, you could send me some of your magic for the year ahead.

I know you’re more in the business of making toys and that I should probably be forwarding this to my fairy godmother, but she abandoned me a while back. Between you and me, she wasn’t up to much anyway.

They say it is important to look forward and concentrate on the future, but I admit my view of the road ahead is unimpressive and pitted with what looks sadly like more of the same. I know this is because in my heart I cannot accept I am going into another new year, still on dialysis.

This letter is about hope though, and I have to hang on to some optimism that the year 2011 will bring me the healing I require, some direction in my life again and some purpose to my days, which are currently silent and empty.

Any one of those three would be wonderful – all three would count in my eyes, and possibly in the eyes of the Vatican, as a miracle.

When I was young, I used to try to out-do my brother in the number of 'pleases' I could put at the end of my letter to you. Thankfully, I now have more words in my vocabulary with which to appeal to your kind nature.

So I will say, I would be most grateful if you could consider my request and make me a believer once again.

Please, please, please, please, please, please, please, please, please, please x one hundred million trillion, to infinity and beyond...

Yours,
Regina Hennelly
Aged 28.

Monday, December 6, 2010

The joys of this upheaval

There is only one word to describe the gait I have adopted over the past week or so, and it is the word feeble.

I have been moving across footpaths with the velocity of a tortoise on his way home from a heavy night’s drinking. Inching forward, eyes fixed no more than one metre ahead, speed reduced to about a quarter of my normal pace. It has made the darkened days seem longer, but only because each polar expedition to the shop or to the bus stop has seemed epic.

Largely, it has been fun. I love snow and I love anything that interrupts the routine of huge sections of the populace. In a fractured society where I know nothing of my neighbours, it is nice to occasionally share something, even hardship.

I had my Elephant Island moment last Wednesday, when after standing on O’Connell Street for half an hour, I accepted there would be no bus to transport me back to Suburbia Land. I set out on foot with my friend. She was the Shackleton to my Tom Crean. Only TC didn't get pegged with snowballs by gurriers on Clanbrassil Street.

There has been the joy of not having to go near my stupid car for a whole week. My car has always been stupid, since the stupid manufacturers first gave it a stupid engine that requires me to put oil in it before each and every long journey I undertake.

I only keep the stupid car because public transport would not entertain me these days. One cannot travel light when you need to bring a dialysis machine and lots of fluid everywhere you go. A camel would be my only alternative means of transport and I cannot fit one of those in my apartment.

The car will be the first thing to go after transplant. Actually the second. After Brendan. Maybe I’ll put Brendan in the stupid car and push them both off the edge of that same cliff where Thelma & Louise met their doom.

The upset of routine and the ignoring of the car have been welcome, but
the difficulty with moving on foot has been most annoying. I am terrified I will break something. The loss of even a baby finger for a few weeks would be a disaster. It would make dialysis rather impossible. Three-minute handwashes would be difficult with a big plaster on my hand. A big plaster which in lay-dialysis-man’s terms is more like a big hive of potential bacteria that will land me with a peritonitis and a whole lot of pain.

Breaking a leg/foot/toe would not impact on the handwashing, but unless I could craft a way to carry the 5 ltr bags of Physioneal fluid in my teeth while hobbling on crutches from the spare room to where Brendan resides, it would also leave me in a pickle.

So I’ve been shuffling along with the other old dears in my neighbourhood. Cautious to an embarrassing level, the subject of ridicule by the childer-beasts in my estate and even by the reckless adults who chose to give those little brats life.

The snow is melting now, but as anyone from the country with country parents knows, that’s not where the real danger lies.

The two most terrifying words in the lexicon of potential threats in this scary and violent world. No, not "nuclear attack" or "terminal cancer."

You know what I'm talking about.

"Black ice."

Tuesday, November 30, 2010

It's beginning to look a lot like bah humbug

Words escaped me for the last week or so. There was just nothing more to say. Or so it felt.

It’s the least wonderful time of the year for many pursuits. Dialysis is top of my list, followed closely by wallowing in what went wrong and how I ended up here with nobody to talk to.

Christmas is a big deal to me. I missed out on too many happy holidays in my teenage years, so in adulthood I have tried to make up for the magic that was lost. I drive festive tackiness in the family home. I make people wear party hats and I over-decorate the tree and I insist on any squabbles being placed to one side for that day.

My situation last Christmas did not easily allow for the creation of happiness. Affairs were topsy-turvy and unclear and unsettled. And the ‘good room’ in the family home was cluttered with dialysis fluid to get me through the holiday, not serving its usual purpose as being the space into which Christmas visitors should be ushered.

This Christmas feels no different and will be no different. In fact it feels already as though it will be worse.

But I know I should update you on what has been happening. Last week was my usual week of usual tests, but not with the usual doctor.

This woman asked different questions, the first of which was "any symptoms"?

"Why yes, doctor, I've notice there's a machine attached to me for 8 hours every day".

She placed much more emphasis on the length of time I have been waiting for transplant and asked the nurse to fetch figures on my "matchability" (it's 93%).

All keyed up from the news during the week of a living donation by keyhole surgery at Beaumont, she asked if I wouldn’t try and look into finding a donor from my family. She enforced her argument by telling me it would really be better for my general health to get off dialysis as quickly as possible.

Little revelation for me there.

My bloods were all fine anyway, thus re-affirming my title of Most Boring Dialysis Patient in the World Ever.

Last week also brought me to the Cardiology unit for a heart echo - something required by Beaumont to ensure my name remains on the transplant list for another year.

I hate heart echoes more than any other test. Aside from the embarrassment of it, there is the sound of my heartbeat to contend with, amplified and in surround sound for those twenty minutes or so.

It may seem odd that I hate hearing my pulse. You’d think I would have developed some grรก for it with sickness. Hating it seems akin to a person in danger of going blind having a severe dislike of opening their eyes in the morning and seeing the sun.

I'm weird.

But I did look at the screen to see my heart thumping away from every angle, reassured to find that despite everything, it still beats.

Bruised surely, but not broken.

Onwards now.

Sunday, November 14, 2010

In favour of omens

I am not one for taking an event or a twist of circumstance and trying to massage it into ‘an omen’. It seems a very imprecise science, based more of the viewpoint of the fatalist who is trying to categorise it than an actual message from the universe.

But occasionally, even I have those moments where in my limited teenage brain vocabulary I think “that’s mad”.

Today, I happened upon a chance meeting that got me hoping that Fortuna was finally making her way down my aisle. I met the man who will save my life.

I do some casual work from time to time on a particular radio show and was called in for this morning. Initial grumbling about the early start on a morning cloaked in the meddling work of Mr Jack Frost quickly lifted when I discovered one of the guests on the show was David Hickey.

I have mentioned his name before, but as a reminder, he is head of the Kidney Transplant unit at Beaumont Hospital (he’s also a bit of maverick when it comes to many of his views and a great speaker – hence the occasional media appearances in between episodes in scrubs).

I made it my business to say hello to him and explain we had met before in an office in Beaumont when he was considering whether I was suitable to be listed for transplant.

He didn’t remember me. Of course not. I am one of many failed bodies who pass through his unit, seeking alms in the form of donated organs.

But he was gracious and interested in hearing I was on dialysis, and I think I may have detected a hint of surprise in his voice when he heard how long I have been waiting for the call.

Our encounter was brief, conversation short between journeys to and from studio and interrupted by other people caught up in the immediacy of the radio broadcast and not realising that our chat was about my life and death and his means of bouying the former and preventing the latter.

How odd that this man who flitted in and out of my Sunday morning is the surgeon who will most probably give me my life back at some appointed hour in the future that is as yet unknown.

I’m choosing to believe this is a good omen.

There is that old joke between friends about hoping to meet again soon under different circumstances, but on bidding farewell to Mr Hickey today, it seemed appropriate to throw out that punchline and mean it in the best possible sense.

“Under different circumstances, yes...under anaesthetic”.

Sunday, November 7, 2010

In Memory Of

Yesterday was a strange one.

The Service of Remembrance for Organ Donors was held in Dublin and I had to go. I will admit I wasn’t keen on the idea. I have not been happy for the last week or so and the idea of dwelling on my current situation through reflection at a semi-religious gig did not appeal.

But above that, there was the sure sense that someone in my position should be there. It is little to ask, that once every year, we organ harvesters and would-be organ harvesters, should come together and remember all of them.

Regular readers will have picked up on my pessimism when it comes to God, but I have some belief in the idea that where many people gather with a common spiritual purpose, something is achieved, some plain is reached.

The purpose of yesterday was to acknowledge the thousands and thousands of people who have donated organs since those operations were first carried out here decades ago. So many hearts, lungs, kidneys, livers and pancreases all floating around above ground and below the heavens, ticking on, despite accidents and traumas that killed many who were too young to die.

The Service was not so moving for me. In my selfishness, I found it difficult to see beyond the point where my own dialysis tube ends and where these miracles and acts of generosity and renewed life begin.

But I could appreciate the extreme sadness of so many families who were there, many probably not long bereaved, coming to that Church to see not a reincarnation of their loved one, but to seek solace in the fact that some good has come of that death.

For those who are transplanted, it is an odd occasion. It must be similar to a person who emerged unscathed from a two-car collision attending the funeral of the unlucky driver who died. You feel complicit in this grief, as though you were an accessory to it.

That would be my take on it anyway. I have written before about how uncomfortable I am with the fact that someone will die and I will profit from that. Not quite blood on my hands, but it feels wrong. It feels like unethical ambulance chasing by a greedy lawyer and grave robbing rolled into one. A Lionel Hutz-and the grave robbers from Huckleberry Finn-combo.

I hope in future, when I attend these Masses as a transplant recipient, I will be able to grasp the full reality of the occasion. I know it will be difficult to cry for someone I never knew and that whatever tears there may be will be of relief and gratitude for the fact I came through the other side of dialysis, but I hope there will be more.

I hope I never become complacent about it. I hope I never forget that the anniversary of my transplant will also mark the anniversary of the death of my donor. I hope I always remember to send a letter to that person’s family every year; that I live long enough to write a thousand thank yous in a thousand different ways.

Wednesday, November 3, 2010

Transplant's Next Top Model

I met another real-life transplant recipient the other night.

He is just recently resurrected and his new life is suiting him well. There were complications, which he was honest about. There was praise for David Hickey - he who makes the incision and transplants the kidneys in Beaumont - which was nice to hear. And there were positive words about how it will happen for me too.

The mother went home happy to have heard all this. I went home pensive.

What struck me most was the difference that exists between the male patient - somewhere in his fifties, married, at a point in his life that is comfortable and secure - versus the female patient, somewhere in her twenties, unmarried and at a point that is pockmarked with insecurity.

Let’s face it. I’m as vain as the next girl. I make efforts to conceal bags under my eyes and spots that may appear on my face, I use lip gloss to make my mouth look pout-perfect, I apply mascara so that my eyes look wondrously large and beguiling and I wash my hair every day so that it swishes.

I have grown used to the fact I’m a freak with a tube in my tummy and I now fret about how much worse this body image could get. I have heard rumours – bad, bad rumours – about what the anti-rejection drugs and steroids do for your appearance after transplant.

Bald and fat. These are two adjectives that may await me. Some people report hair loss from Prograf; everybody talks about how the steroids make you feel endlessly hungry, leading many to gain poundage.

I looked at this transplanted man the last night, sitting there in his pyjamas, swollen legged and one stone heavier since the donated kidney gave him back the ability to see food, desire it and enjoy it.

In my vanity, while I could appreciate the new life that sat before me, I was distracted by the cosmetic repercussions.

For this, I blame my own clear insecurities and my need to leave the house of a morning, knowing that I don't look too bad. This has been the half of the battle that I have chosen to fight, and fight well, for the last two and a half years. Never underestimate the value to your mental health of putting the fair side out.

I need people to judge my book by the cover, cos if it’s what’s on the inside that counts, then my inventory is a bit embarrassing: two diseased organs, one heart (probably enlarged due to hypertension), a tube sitting somewhere beneath my belly button, lungs that are under pressure from fluid pressing upon them 24 hours a day, and a healthy liver that’s wondering what the f**k happened to the rest of the lads.

The cover is all I have to work with.

Sunday, October 31, 2010

The live register and dialysis

Recession has hit my treatment.

Baxter – they who are in the business of Brendans - is to cut loose almost 200 of its workers from one of its Irish factories.

This particular Baxter factory is local to my house. It was one of those brand names that popped up in my vocabulary when I was a child, and stuck there by virtue of its omnipresence in the life of the village, the town, the county.

Half the kids in school had a parent who worked there; everyone had an older sibling who got a summer job there at one point or another.

With sickness, and my starting on dialysis, I took some vague comfort from the economic symmetry I could see in my plight.

The factory that had provided employment in abundance for the community into which I was born was now supplying me with a lifeline to prevent me from dying.

Supporting local industry.

Now the factory is in trouble, itself on a life support of sorts, a good wallop of its workers preparing for unemployment.

As I have driven past Baxter over the last two years, I have often seen them coming and going from their shifts and I have wondered how much they ever consider the work they do, how aware they are of the difference their product has on the lives of people like me.

Now, after years and possibly decades of that work, they are facing their own problem in the shape of a different type of uncertainty to the uncertainty that lies before dialysis patients.

They may have children and health problems of their own and little hope of alternative employment on this side of the country that does economic depression better than others.

I wish them all well. My future lies in the hands of some soon-to-be bereaved family and surgeons; theirs lie in the hands of economic forces and the government.

One would have to say that optimism lies more realistically and comfortably with the former.

PS Many have commented on my new design. I'm glad it is pleasing to your eyeballs and credit goes to my favourite web genius, Milo Shaper. Please make use of the buttons at the bottom of every post to 'like' it for facebook or 'tweet' it for Twitter.

Monday, October 25, 2010

Some thoughts on Beaumont

It feels, in some ways, as though I’ve been adopted by a family, but they forgot to come and collect me at the orphanage.

Or as though I have been injured somewhere along the journey to the summit of Mount Everest. I have put the call for help in and I know it has been received, but I don’t know if anyone is actually coming to get me.

It has been 14 months since I was granted an audience at the transplant unit at Beaumont Hospital. This was a formality. All my tests were complete, and the surgeon signed off with his esteemed opinion that I was fit and healthy (well, relatively). I was then officially pronounced “active” on the transplant list.

Since that day, nothing. Not a phone call, not a Christmas card, no general mail-shot from the hospital, no text to assure me my name is still in their files somewhere.

This irritates me greatly. I know they communicate with my medical people every month and I know that my bloods are sent to Beaumont every three months for regular testing for antibodies.

But the communication I crave is something more direct. A line between patient and transplant coordinator. I know they have bigger things to worry about in the immediate activity of a busy hospital ward, but still, a little initiative for the hundreds of people on the transplant list would not be difficult to arrange.

An emailed newsletter every quarter, perhaps; an update on how many transplants they have carried out recently; any indication to the patient that there is a whole hive of life-saving activity ongoing in that unit and that you will eventually have your turn to benefit from it.

I know some of you will be thinking ‘why doesn’t she tell this to someone who can do something about it’. I have. I mentioned it to one of my consultants some time ago and he agreed to bring it to the attention of his colleagues in Beaumont.

This is the Irish health service however. Therefore, the best I can hope for is that some action might be taken in the next decade.

I will most likely require a second transplant in my lifetime. Maybe by then, Beaumont will have an app for the futuristic version of the iPhone, sending an alert every time an organ is donated.

Then, that phrase I used to rhyme off when I was young would make a new kind of sense.

"Every time a bell rings, another angel gets its wings".

For trivia kicks, name the film in which that line appears...

That's right. It's a Wonderful Life.

Monday, October 18, 2010

Air Rescue

Looking around the A&E, I contemplated whether I was the only female in there as a direct result of an abusive relationship.

A Saturday evening. Women everywhere united in an insane need to watch that awful, awful show, the X Factor, and women in this waiting room united by their suffering at the hands of the man in their life.

My man, of course, is Brendan.

The pain that began as soon as I started dialysis on Friday night became increasingly unbearable until the decision had to be made to wreck the weekend with a visit to the grimmest outpost of the Irish health service.

One of the perks of arriving at an Emergency Department already in the throes of a chronic illness is that you are fast-tracked through the trolley system – no hospital wants you to die on their watch.

There was speculation first that the tube had shifted inside me, that it may have somehow hooked itself on to my omentum (the internal layer of tissue that covers the peritoneum).

The agony was being felt in my shoulder - one of the hilarious little quirks of the body. Anybody on APD will know that the first few rounds of dialysis grant you a jolt of pain in the shoulder area when the machine is draining your tummy of fluid.

This was much more than a quick jolt. It felt more like a heart attack, but at that moment, a heart attack actually seemed preferable to the idea of having surgery to return to the tube to its correct position in my pelvis.

Those doctors can be such Daily Mail-like scare mongers however. X-rays revealed that my tube was behaving itself perfectly well, that it had not strayed or gotten involved with any tissue. Their diagnosis was thus downgraded from a Code Red and they told me the pain was being caused by...air.

Fucking air????

Apparently if any air bubbles leak into your peritoneum cavity through the tube, they lie there, ‘tickling’ the diaphragm and causing unmerciful pain to shoot through your shoulders.

Brendan did this to me on purpose. As I mentioned some weeks ago, I have started using extension lines to keep him as far away from me as possible. Those other abused women may banish their man to the couch, but I only moved Brendan to the hallway, and still he had to punish me.

He is now back in my room. Extension lines abandoned, sleeping again side by side.

I swear he is louder than ever now. Or perhaps that is just his form of an evil cackle, mocking me.

Tuesday, October 12, 2010

Idle thought

This post falls into the ‘curiosities’ aspect of my blog description, and it is the curiosity of crying.

Not a curiosity, you say? More a simple reaction, learned at birth and controlled with age, despite the rolling disappointments of growing up and growing old?

Well, it is curious to me. I observe the little ones in my life. The newborn with her occasional bawling episodes which are her only form of communication, telling her parents that she needs to be fed or that she wants to be changed or reminded that they are still there, somewhere in the dark.

I see how and when the two-year-old cries. She has by now realised the best way to attract attention is to let out any noise that signals distress. You can see she isn’t really upset. She watches you with inquisitive eyes and registers how you react.

This is clever, part of her learning, but it is something that her godmother will ensure she grows out of. A girl who unleashes tears to get what she wants is manipulative. The shepherd boy may have cried “wolf”, but the shepherd girl released a few big droplets of emotional blackmail and succeeded in getting the townspeople to just mind the sheep for her.

I know some who cry easily. At fiction, mostly. Or at the stories of others. This is soft crying, and it is a sign of an empathetic nature. We may be the only animals who will murder our own, but we are also the only species who can feel genuine sadness for the sadness of strangers.

I know others – those who have had more difficult lives – and they cry as the broken people do, with the kind of abandon they couldn’t apply to selfish teenage rebellion because of the situations in which they grew up.

I recall one night out when one such friend discovered her coat had been taken. She cried like everyone she loved had just been taken from her. For her and many others like her, it is never a case of crying for that moment alone, but of sobbing for every upset they have ever known.

When I think back to my father’s funeral, what shocked me out of the surreality of watching that funeral scene through the eyes of a child was the sight of grown men I had known all my life, crying. Strong men, those who always knew what to do, who were tough and hard-working and who to my mind had never discussed a whole lot with my dad other than the weather and the price of cattle.

I understood many things in those days. That people who may never converse in a deep fashion will still have a fierce love for those with whom they grew up.

I came to understand also that while crying may indeed be controlled with age, the urge – and occasionally, the irrepressible need - to just let the tears come spilling out, never, ever goes away.

Tuesday, October 5, 2010

Leaving Cert song revisited

This song was a big hit the year I was doing my Leaving Cert. Back then, all the lines seemed to sing to our excited selves as we moved on to college. Now, more than ten years later, I have tweaked it to my current situation.

If you want to remind yourself of the original, click here:




"Ladies and Gentlmen of the Transplant and General Sickness Class of 2010...
Wear sunscreen,
If I could offer you one piece of advice pre and post-transplant, sunscreen would be it
The long term benefits of sunscreen has been proven to help fend off the skin cancer that threatens you as a side effect of anti-rejection drugs,
Whereas the rest of my advice has no basis more reliable than my own meandering experience.
I will dispense this advice now...
Enjoy remembering the power and beauty of your youth; oh never mind, you already know that you did not understand the power and beauty of your youth until it was taken from you.
But trust me, you will pass many hours looking at photos from before you were sick and recalling in a way that fills you with grief just how much possibility once lay before you and how fabulous you once looked.
You are not as pale and drawn looking as you imagine.
Don’t worry about the future, you already know worrying is about as effective as trying to change blood results by chewing bubble gum.
The real trouble in your life did turn out be the last thing that ever crossed your mind; it really was the kind that blindsided you at 4pm on some idle Tuesday.
Do one thing every day that reminds you you are still alive.
Sing,
Don’t be reckless with other people’s hearts; don’t put up with people who are reckless with yours
Floss
Don’t waste time on being jealous of the healthy people who surround you; sometimes you’re ahead in dealing with life’s crap, sometimes you’re behind; the race is long and in the end it’s only with yourself.
Remember the compliments you received before the nicest comment became “you’re looking well, considering...”
Forget the insults and the startled looks of those who haven’t seen you in some time -
If you succeed in doing this, please tell me how
Keep your old love letters from the time when love was easy and not secondary to sickness
Don’t open your bank statements to be reminded of how your earning power was slashed the moment you became ill
Stretch
Don’t feel guilty that it no longer seems important what you do with your life
The most interesting people I know didn’t know at 22 what they wanted to do with their lives, some of the most interesting 40 year olds I know still don’t
Take your calcium acetate tablets if you are on dialysis
Be nice to whatever kidney function remains, you’ll miss it when it’s gone
Maybe you’ll marry someone who accepts you regardless of your condition, maybe you won’t; maybe you’ll defy the odds and your broken body will produce children, maybe you won’t; maybe your transplant will still be working at 40, maybe you’ll dance the funky chicken when you’re named the longest recorded living transplant recipient in the world
Whatever you do, don’t congratulate yourself too much or berate yourself too much either
The choices that are left to you now are your real chance. A little different to everybody else’s.
You must still enjoy your body, use it every way you still can...don’t hate it or be afraid of it or what other people think of the scars on it. Despite its failings, it is still the greatest instrument you will ever own.
Dance...even if you have nowhere to do it but in your own living room
Always read the directions on your medication, even if you don’t fully follow them
Do NOT read health magazines, they will only make you feel more poorly.
Get to know your parents and appreciate how your illness is killing them just as it is killing you.
Be nice to your siblings, they are the best link to your past and the people most likely to offer to donate an organ to you in the future.
Understand that friends come and go, but only a precious few will remember to call you up and simply ask you how you are
Work hard to bridge the gaps between their healthy lifestyle and your hospital existence, because the sicker you get, the more you will need the people you knew when you were young.
Try to go private once, but leave this behind before it makes you haughty; go public when you have to, but leave this behind before it makes you bitter.
Travel as soon as you have recovered from your transplant and you no longer have to bring a dialysis machine.
Accept certain inalienable truths
Prices of tablets will rise; politicians will waste the money that should be spent on the health service, you don’t know that you will grow old, but if you do you’ll fantasise that when you were young prices were reasonable and politicians were noble and children respected their elders
Respect your elders – even if they moan and you wonder how they can be so downhearted when they have made it to an age you may never see
Don’t come to rely on the support you receive when you’re sick
Maybe you have a trust fund, maybe illness benefit is enough to sustain you, but you’ll never know when the state will pump the guts of €50 billion into bailing out the banks and all social welfare will be cut
Don’t mess too much with your hair because future chemo and anti-rejection drugs may make it fall out
Be careful whose advice you buy, but be patient with those who supply it
Advice is a form of conversation that fills the gaps where ordinary people have no clue what to say to make you feel better.
But trust me on the sunscreen...

Saturday, September 25, 2010

Human infants

Her name is Grace and her arrival breathed new life into an existence and a homestead that had become sad and weary. My brother’s baby. His daughter. How strange that sounds, to think that the boy I built the treehouse with is now a father.

Her birth brought more joy that I could ever have imagined. I am not the most maternal of girls. I was loathe to become one of those who cooed over every little movement, but even I could quickly appreciate the magic her very presence brought to us all.

She is unaware of this, of course. She may never comprehend the difference she made at a time when we needed to be reminded that life is indeed beautiful. She arrived just over twelve years after my dad died and about 18 months after I was given a diagnosis that would change all our lives.

The years had been difficult, not in an overt, obvious way, but in a creeping and slow erosion of the spirit that once filled our home. The silence that descended in the days after the funeral mourners had left, settled and hung there as a reminder of what was now gone forever. Who was gone forever. Junior and Leaving Cert results, Debs balls, Christmas dinners, college days and graduations all muted slightly, somehow hushed – not on purpose, but by default of grief.

The revelation of the pregnancy brought the first glimpse of life again. The birth completed the process. There she was, the first baby in our family since the country was last in recession and I made my entrance in the eighties.

She is now the centre of the world, as she should be. All smiles and stumbles as she gets to know herself and figures out gravity and the placing of one foot in front of the other.

Whatever she grows up to be, she has already performed a miracle. She brought happiness again, fresh and pure and hopeful.

Grace is almost two now. You may ask why I choose to mention and write of her today?

Because last night, while she was sleeping, she became a big sister.

Welcome Baby Beth.

Tuesday, September 21, 2010

Catch 22 - The Alternative Version

While lying in the hospital wing following the death of Orr, all of Yossarian's dreams and nightmares converged and collided in one diagnosis.

So long had he pretended to be afflicted with his fictitious liver disease, he forgot about the possibility of actually becoming ill.

But they told him this had now come to pass, his kidneys were dead and he would have to start dialysis.

Yossarian considered this turn of events. On the upside, it meant he would no longer be forced to fly any more missions - thus sparing him the possibility of death - but it also unquestionably meant he was now actually dying.

After some time on dialysis, he began to feel atrocious. A feeling that even the sight of his beloved Chaplain could not weaken. The feeling of being run over by a steam roller and of having the life gradually drained out of him.

He went to his superior and asked what could be done about this:

"Well you're dehydrated so you need to drink a lot more and take lighter dialysis for a few days"

"Won't that mean the toxins which should be cleared from my blood will just remain there, making me feel more nauseated, especially in the mornings and last thing at night?"

"Well yes, but that's Catch 22"

"And won't taking more fluid on board increase my risk of a fluid overload which could result in a heart attack?"

"That's Catch 22 also"

"I thought you said the first one was Catch 22?"

"It's a big loophole"

"What if I just don't do dialysis anymore?"

"Well then you'll die. That's the real Catch 22"

Yossarian returned to his sick bed and tried the light dialysis. As expected, he felt less like he had just had an encounter with the big wheel on a steam roller, but more like he wanted to take his insides, shove them in a bin bag and throw them down the garbage shoot.

As he lay there, he thought about dialysis and this Catch 22. He got it into his head that the power of dialysis only lay in the fact that everyone believed in it. Everybody did it, because they thought it was keeping them alive and nobody knew how to stop doing it because of Catch 22.

So he took the brave step of stopping. He felt relieved and released from his burden, he felt alive and for the two days he survived, well those were the happiest two days of his life.

It was actually at this point that he uttered the best quote from Heller's original version of the book.

"I'm not running away from my responsibilites. I'm running to them. There's nothing negative about running away to save my life"

Then he died.

Catch 22 caught up with him.

Monday, September 13, 2010

Tick, tock, tick, tock

There is one topic that occupies the mind of the dialysis patient.

Time.

We obsess about it, placing it as the starting point of our introductory conversations. Names are irrelevant, it is your point in the dialysis/transplant cycle that identifies you to your fellows in the same boat.

In happy moments, I sometimes think we should all follow the trend of Flavor Flav, that god-awful rapper with the giant clock around this neck.

In less happy moments, I picture myself and all dialysis people as kids in our respective houses, who desperately want to go out and play, but who are looking out the window at endless rain. Fun spoiled.



For many of those awaiting transplants of other organs, time is their enemy, with only a finite supply of oxygen left in their lungs or beats left in their heart, but for the one on dialysis, it is more sophisticated in its torture methods.

Not for us, the knowledge that time is running out. We have the means to stay alive.

No, for us, there is the knowledge of time being wasted. It is usual amongst those who have received a life-changing diagnosis to say they realised quickly that life is short.

“Carpe Diem”, they holler.

We too realise the fleeting nature of a human life, but we can’t get out of the blocks to seize this day. We maintain a half-existence, with 10 hour sleeps at night, a nap during the day and the ongoing feeling of being in a hungover haze.

When I was diagnosed with CKD, I was told that I would have to get worse before I could have a chance of getting better. In this way, pre-transplant patients are unique. New organs are hard to come by and they are precious; you have to wait your turn.

In my case, I had to wait until my kidney function dipped below 20% before I was considered sick enough to be placed on the transplant list. Then came dialysis.

This too brought its unique aspect, in that here was a treatment that would continue for an indefinite period of time. The cancer patient knows they will have a course of chemo or radiation therapy for x amount of weeks or months; others know they will be on medication for the rest of their lives; but the dialysis patient doesn’t know how long they will endure the blood-cleaning services of their machine.

How can you steel yourself for a process when you don’t know for how long it will continue?

You can’t.

So time bullies us and taunts us. Every day, we watch the rain, fully aware of what normality we are missing and of all those elements of life that are passing us by.

We talk about time – the months or years spent on dialysis, the months or years on the waiting list, the hours per day hooked up to the machine.

And we wait.

Sunday, September 5, 2010

Anatomy of a lost generation

The following is a short history of the flawed anatomy of one half of my family tree.

Consider my mother and her siblings. They are all either heading for, or have already passed their 70th birthdays - not old by today's standards, but not young either.

Yet between the four of them, there has never been one serious illness. No cancer, no heart problems, no major surgeries or time of any signifance spent in hospital.

There were a total of nine children born to those four siblings, the first coming along in about 1968, the last (my good self) being born in 1982.

Only seven of us remain alive.

Two of my first cousins have died as a direct result of being born with Cystic Fibrosis. They were the son and daughter of my only aunt, and her remaining child also suffers from CF. He has been kept alive through medical intervention that was not possible for his brother and sister. He received a double lung transplant in 1996 and a kidney transplant in the years since then.

My uncle had four children, the youngest of whom was born with Down's Syndrome and who has in recent years also gone blind.

Finally, my mother added two more children to the mix. A boy and then a girl - a gentleman's family, as was joked to my father time and again. My brother is fit and well, but I have my organ failure and my wait for transplant.

I often muse on our generation and I am reminded of the matriarch that stands at the head of this side of the family tree. My nana.

To say she was a formidable woman is to understate the killing power of semtex. She was born in 1899 and she had her sights set on her 100th birthday and a cheque from the President when she passed away.

I never remember my nana being sick. She broke her leg when she was 89, but she bounced back from that to continue to read the newspaper without the aid of spectacles, to have a sharp interest in current affairs and to order her middle-aged children around as if it were still 1954.

She died of old age really, but it was a battle to put her to sleep. Her will to live overpowered everything else and it took the gentle euthenaisa of a morphine pump some time to send her on her way. My dad always said she would outlive him. He was right. I only hope he was waiting for her up there to direct her straight towards DeValera's quarters on arrival. He was her hero in 1916. Yes, she was that old.

Nana's siblings also all lived to be in and around the 100 mark. To look at that generation and my mother's generation, it would seem that ours was a family that was impervious to weakness and premature failings of the physical kind.

But having skipped two generations, Death and his forerunner Sickness has evidently sought to make up for lost time by invoking double the suffering in our generation.

There is a good chance that of the nine grandchildren my nana welcomed into the world, only half will make it to old age.

She would be so disgusted with that.

Friday, August 27, 2010

Keep your Secret

Lots of people talk to me about this book they call 'The Secret'.

It is one of those books that makes promises and is categorised beside the 'Self-Harm' section, under 'Self-Help' (I'm always getting those two mixed up).

Fans of 'The Secret' claim it provided them with the tools they required to pull the universe around to working in their favour. It landed them their dream job, got them through exams, made them a better person.

The trick, it appears is to tell the world what you want and then prepare yourself, i.e. "World, I want a bicycle, look I've bought the gear and everything".

For the single girl, it advises that the way to land yourself a man is to park to one side of the driveway, sleep on one side of the bed and clear out half the clothes in your wardrobe.

In other words, you make room in your life for that boy, and you ready yourself for his snoring, his taking over your closet space and his complaining that you can't park properly.

There are two hopes of me ever reading this book. One involves the unlikely scenario of one day finding there are no other words in the world left for me to read. The other involves being captured and held hostage and subjected to torture methods that integrate the use of it and other books as a means of extracting information from me.

However, I do have some time for a 'Field of Dreams' approach to getting my new kidney. I'm not talking about taking a scalpel to myself to show Beaumont I'm really, really ready for a transplant, but about positively projecting my hope that I will have a transplant by this time next year into action of some sort.

So I have taken some tentative steps in this direction. I have decided to start making plans for next summer. First on the list is to send in my application for tickets for Wimbledon. Maybe I will also make rough blueprints for a long holiday.

"If you build it, they will come"

Sunday, August 22, 2010

A good night's sleep

I have referred in posts past to my impatience for gadgetry in all its forms and with all its false promises of an easier life.

If I were present at the invention of the wheel, my initial reaction would have been a shoulder shrug and a 'Meh, what's wrong with walking?'

While some don't like change, I tend to regard it with deep suspicion. I'm not sure why. It is probably an extension of my many insecurities or my general laziness. I do like to find a comfortable groove, nestle in and stay put.

It is for all of these reasons that everyone will one day be taken completely by surprise when I take over the world...but back to my point.

I don't like gadgets and new-fangled items, but I have stumbled upon a dialysis accessory which has revolutionised the way I have been sleeping for the past 400 or so nights, since I first brought Brendan home to meet my mother.

It's an extension set for the patient line - in healthy human terms, it is basically a longer line that connects me to Brendan, allowing me to keep him outside my bedroom if I wish.

I tried it out the last two nights and all I can say is separate bedrooms may be the key to a happy marriage, but it is also the key to a better relationship between one girl and her dialysis machine.

Word has it the health authorities don't tell us about these extension lines because they add extra expense to the already hefty bill rang up by APD patients.

I have some sympathy for this and I don't wish to cost the taxpayer any more money, but good sleeps make for healthier dialysis patients and that may end up costing the health services less in the future.

So if you are on APD and you're having trouble catching your zzzs, ask for some extension sets. It almost makes dialysis bearable.

PS My thanks to Milo Shaper for alerting me to the existence of these lines and to Sonia for providing some samples!

Wednesday, August 18, 2010

Is it all relative?

And so she returned. Back from the front, still in one piece, having done her bit for dialysis patients everywhere.

That's one way to view it anyway. My participation at the European Transplant & Dialysis Games was at its core a mission of sorts, to prove that though the kidneys may have failed, the heart has not.

I emerged with five medals and the title of Best Female Dialysis Athlete of the Games. I cannot put into words how utterly hilarious I find this thought. A few years ago, I wouldn't have run a bath. Now I run distances for both enjoyment and to satisfy my competitive streak. That's what a diagnosis can do. What better time to choose life than when it is being tugged away from you?

It is beyond surreal, this latest twist in what has been two and half years of back to back dramatic episodes.

When I was in college, some philosopher type wrote a piece arguing that the phrase 'it's all relative' was redundant. Nothing, he argued is relative. In the case of his writing, he was referring to poverty. We should, he said compare our manner of living and our comforts with those in the third world. We are all humans, therefore we can make the direct comparison and take the guilt and the shame that would ensue rather than shrug it off with that relativity claim.

I thought he had a point, until last saturday night when I was out on a dancefloor at the ball to celebrate the end of our Games and I felt a happiness that I have not enjoyed for some time.

There I was, in my diminished physical state, thrilled to have had such success at an event that caters for those who are ill or who are being kept alive by an organ transplanted into their body by the magic of medical advancement.

The sheer madness of the moment and my response to it was not lost on me. This is what happiness is now. This is where it resides. Amongst new friends who are or once were in my situation, celebrating victories while living with what has been the greatest loss of my life so far.

So maybe it is all relative.

Monday, August 9, 2010

Explanation


My writings recently have been niggardly.

Not down to laziness or ill health, but due to the arrival at last of the Transplant & Dialysis Games bandwagon into town.

So far, I've done a lot of talking and little in the way of participating, but that will all change tomorrow.

I don't expect to come away with any shiny objects around my neck, but I do hope to do myself and Brendan proud.

I'll let you know how it goes when I complete my lap of honour next weekend (no mean feat when you're dragging a machine behind you).

Tuesday, July 27, 2010

An encounter

The dynamics of the meeting were a little strange from the get-go.

Strange for me, I should say. I blame the inner dialogue of my brain. Why can't it ever just let me be?

I was lunching with representatives of Baxter - the dialysis people. It was a meeting called at their request and when you are granted an audience with those who supply the elixir of your life you don't tell them you're washing your hair.

I tried to put it in the most positive context. I made comparisons - imagine having the opportunity to sit down with RTE, UPC or Dublin Bus, the joy I would milk from telling them just what I think of their service and how they could improve themselves. It would turn into a rant, a monologue unbecoming of a lady, a scene.

But that wouldn't fly with Baxter, rage would have to be censored on its ferocious rush to translate thought to speech.

I managed nice. I possibly even excelled at small talk and dialysis jokes. But this light at the fringes did not cloak the unsettling thought that this lunch, this threesome of one patient and two professionals created an odd atmosphere.

One particular notion was on repeat, looping around, removing the cynic in me from our circle of cappuccinos to stand aside, observe and report back the uncomfortable truth.

"Pssst...These perfectly lovely people have livelihoods that are dependent on humans like you having useless kidneys. Your sickness is the misfortune that butters their bread, settles their bills, sees their children through private education".

It is probably the reason why you will never see a consultant having a pint with a patient. They make money from the negative events in our lives. You are thankful to them for saving you of course, but in the same way you are much obliged to the AA for jump-starting your car. It is a gratitude that comes from the head rather than the heart.

The logical in you is thanking them; the emotional in you can't breathe for all the sadness and words without syntax that if spoken would project from you in a scream and a twisted knot of bitterness, resentment and child-like fear. The ego and the id, Freud would quip.

I never wanted to cross paths with the HSE, with my consultants, with the good people at Baxter, with the bin men who collect my health waste, with pharmacists who just about suppress the dollar signs popping up in their eyeballs when I arrive at their counter carrying a prescription full of euro.

But they are all bit-part players on my stage now. The whole bloomin' lot of them, cashing in on the worst days of my life.

Friday, July 23, 2010

Where have all the good times gone

Missing: My social life.

I appear to have lost it or given up on it or had it snatched from me while I slept several hours before midnight some weekend or other in recent months.

These are the days of revelling that should be all mine, raging against the middle and old age that will quietly enter and fill the evenings with its contented little joys of cocoa and comfy slippers and hot water bottles.

But the promise of happy chatter over incessant beats has failed to lure me out of my corner of Dublin for some time. There are many obstacles. Friends who have proper relationships and who are caught up in that smug waltz of inter-dependency that fills their diaries with daytrips and hand-holding and expensive dinners in candlelit lairs for couples.

I am not blameless however. I don't send the text messages with suggestions for fun on a friday or saturday night. I think about it occasionally, but then I allow that head-full of antics to cede to the reminders that I would have to set up before I go out, I would probably need a nap also, the fact that more than two drinks will have my heart hammering when I place my head on my pillow in early hours of tomorrow.

So there has instead been a growing reluctance to face the weekends. This is something I have only realised in the past few weeks, that I now value weekdays more because then I don't feel so pathetic being in bed early or structuring my evenings around silly soap operas.

Next weekend. Most definitely. There will be dinner and dancing and recklessness in abundance. There will also probably be bed by midnight, but a re-introduction to the night-life of the city of my college days requires the same soft touch as that of a debutante.

Baby steps.

In stilettos.

Monday, July 12, 2010

It's not my fault

I am enough of an opportunist to know it is a wise patient who occasionally uses her illness as the foundation of an excuse for just about anything.

I don't think this is wrong really - not by any relevant moral or ethical code.

It's wrong to try to get out of an exam by saying your set-dancing, bridge-playing granny has just passed to her eternal reward and it's wrong to fake sickness when you're blooming with health, but when you're fcuked, I figure there's little harm that can be done to your karma in turning the situation to your advantage.

The main excuse that I'm peddling at the moment is that my sickness is making me confused and a bit slow on the uptake, particularly when it comes to technology. It is true - you can check any of the websites - that CKD is said to result in a degree of head-scratching and mild mayhem upstairs. Toxins aren't removed from the brain you see. All those nasty elements that should be excreted remain up there, floating around, clogging up normal thought processes.

Now, I have never been a great one for electronics, having quickly graduated to the OAP bracket of comprehension once the DVD player came on stream and the VCR was relegated to the 'back in the old days' category of technological advancement.

But more recent years have seen the struggle become even more cumbersome. Tonight I tried to download an app to my mobile phone for the first time and I barely made it past the homepage on ovi.com. There were too many instructions and demands for passwords and usernames and requests to sign in to this account and that account.

I fear my lengthy and largely pointless college education did not equip me for all this. And even if I did come into the world with some ability to adapt and learn, it has now been thwarted by this disease that started as a few antibodies in my kidneys before multiplying and posting its poison north to slow the function of my grey matter.

Well, that's my excuse anyway and I'm sticking to it.

Saturday, July 10, 2010

Random thought process

Some people walk away clean.

Raoul Moat didn't, but so many do. They make mistakes, they mess up and mess about but it never catches up with them.

These individuals fascinate me. They are the untouchable ones for whom bad news is a story, it is removed from them entirely. It is something that happens to other people.

It must create within them a positivity that is beyond my understanding. To expect the best rather than the worst must ensure you are a better friend, a better partner and a better parent.

I know some who are like this, who have floated through life unhindered by a phone call in the middle of the night that disturbs the narrative of ordinary living with endless days of silence interrupted only by crying. Grown men crying. Or by the bad timing that implicates the innocent in a tragedy or an accident of some sort - unintentional harm caused is no less heavy a burden on the mind. Or by a test that brings news that the body has failed.

They are good people, but they are of course still unhappy with their lot in life to some extent because they are human and it is the nature of blessings that you only pause to identify and count them as they disappear rather than while they are granting you refuge.

I know too the others, the ones who don't walk away clean, who are targeted again and again whenever they dare raise their heads above the parapet. They get the late night calls and they find themselves in the wrong place at the wrong time. They don't expect anything other than the worst and this in itself is a preparation for the next episode of misfortune. There are good moments obviously, but they come to be regarded as preludes and interludes before or between.

There is a wonderful word that they created for these people.

Stoicism.

To be indifferent to pleasure or pain, not succumb to the passions or emotions evoked by the good or the bad.

It has to be the ultimate coping mechanism, to find that switch and stop caring.

One would have to wonder whether you'd be better off dead.

Thursday, July 1, 2010

Wakka wakka

Gosh, my last posts have been shockin depressing. Not like me, but optimism and the enduring positivity of thoughts on the bright side aren't impervious to other forces.

Even when you're caught up with an illness, there are the normal battles of a twenty-something-year-old on other fronts. They serve as distractions sometimes, most of the time they just make the war itself more difficult.

But I did have one funny thought in all the recent long days and that was that after over a year of trying to describe the noise Brendan makes, I have finally been granted a useful aid for demonstrative purposes.

The vuvuzela.

That monotone drone? That's what I get from Brendan for eight hours every night. It's interrupted by a bit of banging and hissing about once every hour when it drains my tummy and starts filling me for the next 50-minute cycle. But for the most part, that hum that's reminiscent of a swarm of bees trapped inside a fridge, that irritating buzzing that TV viewers of the World Cup will have endured for the love of the game in the last couple of weeks - that's Brendan.

If I had known this tribal horn was going to be such a feature of South Africa and that the sensitive ears of extremely valuable bodies would be affected, I could have offered Brendan to some of the boys in advance to acclimatise them.

Or suggested we organise a symphony of Brendans...seat them around a small stadium somewhere and invited the players to come and practice in such a setting. Maybe even got Adidas or Pepsi to film one of their ads where players just happen to all walk out of alleyways and start doing their tricks with some street urchins and Oliver types.

Too late for that now, but all is not lost. In recent weeks it was announced that the 2010 World Transplant Games will also take place in South Africa. I'll hopefully have had a successful transplant by then and Brendan will have left me, so returning to that noise will be something of an auditory homecoming.

Friday, June 25, 2010

A tearjerker...my apologies

Today is my dad's birthday.

It's almost 14 years since he died and I was 14 when he died, so I am reaching a stage of unwelcome equilibrium. How strange that he has been absent for the same length of time he was present.

I question my memories of him now. Whether they are truly mine or whether they are constructed from the recollections of others who had the pleasure of his company long before I featured as part of his legacy.

The stories I have heard have chided my youthful ignorance of the revelation that mothers and fathers were people before they were parents; that there was life before our family unit and that that life was exciting and funny and even rebellious at times.

My dad was always the one who accompanied me on trips to the doctor. The usual minor childhood illnesses (of which I had several) drilled us in what became a familiar routine. A day off from school and a day off for him from work, into the back of the car with a pillow and blanket, into the doctor and then a video of my choice and whatever treats I wanted on the way home to the couch which always served as the sick bed.

It was also dad who was with me for my first encounter with a nephrologist. That was when I was 12 years old and there were mutterings we hadn't heard before, suggesting that something may be wrong with my kidneys. Nothing was confirmed in tests that saw me go under anesthetic for the first time and I was sent home to be a normal child and grow out of it.

It is now known that this was the point when my kidneys began to fail. The doctors I have come across in the last two years have grumbled that if we had caught it then, they'd have done this and that and maybe put off the inevitability I am now living with for another few years.

I have no time for their medical opinion on this one. I am glad my dad didn't know what was ahead when he died, that he passed away without worrying that he was leaving me behind with nobody to put me in the back of the car with a pillow and blanket or to get me a video on the way home.

For my increasingly hazy recollections of him, I do remember his laugh and I remember him waking me up with chocolate milkshakes at all hours when he would come home from a meeting. I remember him always asking me what page I was on now of whatever Enid Blyton book I was reading and taking delight in my grasp of the Irish language which he didn't share because like many of his generation, school was dropped out of necessity for taking over the family farm.

Most of all I remember that he was a gentleman of the kindest and most patient manner.

I can only hope that I also made his life, in some way, wonderful.

Tuesday, June 22, 2010

The stats

With the anniversary now gone by and the move into my second year on dialysis complete, I have tried to compile some statistics.

Numbers aren't as good a friend to me as words, but here are some figures from the year that was:

There have been 364 nights of dialysis (one night off, with permission from my consultant).

That amounts to 2,912 hours of being attached by a line that runs from my tummy to the machine in the corner of the bedroom.

I have carried 546 litres of dialysis fluid around in my tummy throughout the daytime hours and by night a total of 4,368 litres have flowed in and out of my abdomen.

I have gone through (and duly recylced) rougly 1,752 cardboard boxes.

I have taken 4,004 tablets and 15 energy injections.

I have had approximately six pints of blood taken from me for various tests.

I have spent zero nights in hospital and only about one hour in the company of my consultants, spaced over approximately seven appointments throughout the year.

I have slept about 3,276 hours, an average of 9 hours per day, split between what I manage at night and naps in the afternoon.

I have maintained my weight in and around the 54kg mark and have had a blood pressure reading that has averaged out at about 115/75.

I have thrown up approximately 40 times (mostly in the last two months) and have had to kneel down in the shower to stop myself from fainting on about 30 occasions.

I have walked and run several hundred miles and driven thousands with Brendan in the boot.

I have disposed of about 100 bags of hazardous medical waste.

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

The average wait for a new kidney remains at two years.

Tuesday, June 15, 2010

Away from it all...kinda

Holidays are a matter of discontent for me these days. Mostly because I have made the decision not to go abroad until I get my transplant.

I could in theory step off the island for a vacation. It would mean I would have to pack Brendan into his coffin case and try to float him through the metal detectors at the airport without raising an eyebrow.

Perhaps pre-9/11, it would have been possible. Nowadays I'd imagine his presence in any terminal would result in at least a Code Orange Security Alert and an uncomfortable pat-down for me by some butch looking 'woman'.

Leaving the country would also involve getting my beloved Baxter to deliver all my fluids to where I'm going and would require me to bring all the extra accessories that go with dialysis.

I have considered the possibility, but have had any such notions quenched - not least by the tales of botheration from one of my dialysis buddies who is far less prone to grumbling and moaning than I am but who went away for a week with her Brendan and vowed to never, ever make that mistake again.

Potential annoyance aside, travelling would also require me to inform Beaumont Hospital that I should be suspended from the transplant pool as I won't be available if my kidney came up. Am I going to do this? Absolutely not. I am staying put on this rock until I'm sorted.

So this year I am holidaying in a beach town at home. Some have kindled a conversation with me in cafes or in the queue for a 99 in the shop, saying the recession can't be all bad if we're here on a day like this, with the sun finally finding Ireland and the waft of fish and chips always hovering on the breeze.

I agree with them and smile politely cos I'm a far nicer creature on holidays than when I'm at home.

But I am of that generation which was brought up to believe you have to go away to get away, and I look forward to the day when I can board a plane bound for somewhere strange and exotic again. Already there are blueprints of journeys in my head. So many places to see.

There is the niggling concern about my carbon footprint, but I'll plant a tree.

Heck, I'll plant a whole forest.

Friday, June 4, 2010

A terrible beauty

It calls for both a 'woo' and a 'hoo', this day that greets me every three weeks when I am allowed to give myself a medicated, synthetic energy boost.

It is my most favourite of medications, 30mg of a liquid known as Arenesp. If I were to create a metaphor (and it would be rude not to) this excursion through dialysis could be regarded as a marathon and the Arenesp days mark the water points along the route.

It comes in the form of an injection. I keep a box of syringes in the fridge, currently next to four bottles of beer and out of reach of any children - though if they are any childer-beasts found near my fridge, they've broken in to my apartment, so I say let them stab themselves in the eyes, that'll teach 'em.

It is I who performs the task of giving myself the injection - and it took some getting used to. Nobody likes needles and fewer still are comfortable with not having a doctor or nurse to silently curse and hold accountable when you feel that pinch.

A quote I read from Ian McEwan recently summed it up nicely. He points out that there is nothing in nature to resemble the sight of a syringe piercing skin. It goes against the natural reflex of every sensory nerve to inflict this upon yourself, to willingly infiltrate the bloodstream with something unnatural.

Deep, I know.

I actually didn't come up with any of that myself. I heard two junkies talking down around the Cornmarket the last night. Deep in reflection they were before shooting up.

I'm an awful woman for eavesdropping.

Tuesday, June 1, 2010

My bit on the side

It will not have escaped the attention of observant This Limbo readers that some impostor features have sprung up in the margins.

Check out Playing for Life if you have a chance - it's a blog I've been asked to do in the run-up to the Transplant & Dialysis Games and it'll chart my progress towards the events in August.

I should say that early optimism for unprecedented success at said Games has been given a true reality check and the hype is now more muted than bellowing.

If you think 'sick' people would be lesser competitors for their illnesses, think again. They are athletes and they kick ass.

Sunday, May 30, 2010

A day of reckoning approaches

Tomorrow - my study of the alignment of the stars, the tilt of the earth towards the moon and my homemade sundial tells me - will be May 31.

Which means it's almost June already and time to discard the first calendar which has marked Year One on dialysis.

It also means I have a date with a bottle of vodka and several boxes of pills in a pre-planned suicide attempt.

It was a pact I made with myself this time last year, that if I got to this point, I'd just give the sadistic bastard that is God the last laugh and quietly surrender.

This was the only means by which I could trick my brain into ceding to dialysis. I had to convince myself that such would be the brevity of my reliance on the treatment that one day I would only have a hazy recollection of the time when I was dependant on a machine to keep a heart attack or stroke at bay.

I am reminded of that song from the musical 'Rent'. How do you measure a year? They suggest markers like sunsets and miles and cups of coffee. While there have been many smiles and moments of loveliness in the past twelve months, I largely measure the year gone by in boxes and litres of fluid and hands worn from many, many three-minute hand washes.

And now there is the awful thought that this may just be the overture. The Ballad of Brendan may in fact be a full-blown opera and there isn't one fat lady in sight, unless you count Mary Harney and she's hardly going to help my case.

There will be those reading this who have been or once were on dialysis for much longer and they will regard me as a wimp and a moaner.

Two charges I accept without protest.

But luckily so, because for all my dramatic talk, it is my wimpishness that will ensure I could never carry out my threat.

So it'll be Happy Anniversary to me and Brendan. I'm looking for suggestions as to how we can mark the occasion. The official date is June 21. The longest day of the year. How very apt.

Thursday, May 27, 2010

Tesco - Every little Helps

I had a golden moment yesterday, in the Barry's Tea sense of the phrase.

It happened in Tesco which just goes to show that miracles can be visited upon the earth in the most unlikely of places, including a rubbish supermarket that can sell you car insurance but regards a well-stocked fruit & veg section as optional rather than essential.

In preparation for a night with friends that would largely centre around cheap pizza and even cheaper wine I went to purchase that which was on special offer over the road.

As the cash register lady* scanned my items, she eyed the wine, looked at me and then asked me for ID. I laughed. The nice people behind me in the queue had a chuckle. It was all fantastic fun, until I clocked her expression and the unwavering and authoritative stare of one in full citizen's arrest mode.

"I'm 28 in human years and 104 in dialysis years you mental woman," I screamed in my head.

"Look at me ravaged by life, look at these circles under my eyes caused by Brendan, look at this tummy, scarred and under occupation by the foreign dictator that is this tube," my head voice continued.

But I smiled politely and apologised for the fact that I did not have any proof of the fact I was over 18 but said I could assure her I had long since left any age of schoolbooks and teen drama behind.

The episode got me thinking that there should be an alternative ID system for people who deal with crap - counting maturity as a measure of stress and trauma suffered rather than in birthday cake candles extinguished.

Those who have sailed through life wouldn't be allowed any alcohol or drugs or given permission to enter clubs or pubs or casinos or to play the lotto.

Only those who had experienced loss or hardship or pain would be permitted to have fun and play games with the hope of becoming filthy rich.

Of course, it would allow for children who were having a hard time to develop chronic addictions before puberty and would probably lead to a lot of violence amongst the messed-up types who would congregate in large numbers to socialise after their anger management classes let out.

I may need to fine-tune the theory a bit.

In the end, I did get the wine and I walked away a little more pleased with the world on May 26, 2010. Despite it all, here was some hope that I still looked fresh-faced and youthful.

Take that kidney disease.



* Cash register lady was admittedly quite elderly and possibly visually impaired

Saturday, May 22, 2010

Medicine Women and Men

Doctors, I have known quite a few.

I reflect wryly on a lifetime that has been punctuated by several childhood illnesses, accidents which were not my fault and collisions with immovable objects which were entirely down to people building walls and driving cars in stupid places.

Every incident taught me a little lesson. Not to drink emulsion paint for instance. Not to get so carried in away in a game of 'tip' that you run into a wall at school. To sleep sitting up when you have whooping cough. To wear a seatbelt.

Every incident also introduced me to a different representative of the medical field. Several of them in fact.

Did one of them ever spot my kidneys were failing? Nah. But I digress.

Some I have come across have had a bedside manner that at best should have seen them specialise in pathology. The practice of medicine rather than theory of their text books made them visibly uncomfortable - coming into constant contact with those individuals heretofore referred to as 'the patient' in their case studies and lectures unsettled them greatly.

In my experience, female doctors are generally nicer, many of the men giving off the impression they are only there because they were judged to be "very bright". If you can get into a career of saving lives, why, it would be almost rude not to capitalise on that means of making money and retiring at the age of 50.

A sense of vocation anybody?

The surgeons I have met have all shared that special...self-assured air of importance. This is something I encourage and actually look for in the scalpel brigade. Humility is not a quality I would wish to attribute to any human who is going to cut me open and meddle with my insides. I want a surgeon who believes he or she is God.

Across the board, what they all share however is an ability to detach themselves and stand apart from the scenes that unfold in front of them, because of them, every day. It is super-human.

While grief envelopes the family gathered in the waiting room or the patient perched on the bed, they maintain a steady voice, a stream of non-commital answers, as if they are blind to the effect of their words.

It makes me think of soldiers in battle. A job to do and someone has to do it.

Perhaps it takes more guts to deliver news of a death sentence than to inflict death itself.

Tuesday, May 18, 2010

For the week that's in it

For every seven weeks of denial, there comes again the week of tests. My regular check-up with the doctors who decided against becoming renowned brain surgeons or specialising in human spontaneous combustion, but who chose to become experts on kidneys.

It brings its annoyances, of course. Nobody likes having a needle stuck in their arm and my veins are notorious when it comes to stage fright. There's only one diva amongst the lot of them and she sashays forth to the skin's surface each and every time to take one for the team. The semi-permanent plaster mark on my right arm is a testament to her durability and bravery.

But before the needles, there is the onus on me to collect what urine I pass over the course of 24 hours. A particularly un-ladylike process. Difficult to maintain any sense of grace and femininity when balancing over a toilet bowl, aiming at a container - which brings us to the collateral damage of sickness. After it has hit you physically, it moves on to niggle away at that ridiculous human delusion of dignity.

The blood tests and the urine gathering are the preamble to the main event which will come on friday, the appointment with one of my consultants. There are two of them who work in tag team action. Both men, both nice.

I am however entirely uninteresting as dialysis patients go. I don't have some strange underlying condition that caused my kidneys to fail, my dialysis is working fine (high five to Brendan), I am not overweight (which can make getting on the transplant list difficult) and I'm not a defiant smoker who steadfastly refuses to quit.

Thus my appointments are four-minute affairs.

We go through what medication I'm on. They ask how my energy levels are. They do the obligatory swift examination, but then as we approach wrapping things up, I delay matters by asking some pointless questions.

"Can I roller-blade backwards anymore"?

"If I hang upside down for one hour every day and try to angle all the blood in my body towards my kidneys, do you think that would stimulate function again?"

"Would you think all my other organs are in there pointing and laughing at my kidneys and calling them losers"?

I can only hope that if I annoy the consultants sufficiently, they may slip a backhander to the surgical gods in Beaumont and urge them to transplant me quickly so that they can get rid of me.

I never put a price on love, but ethics can surely be bought at the right price.

Saturday, May 15, 2010

A nun I was not

There is a small snippet of the spiritual journey I have taken throughout my life that the family enjoy recounting from time to time.

It recalls the phase I went through as a young child, when I suddenly took to spending several minutes every night genuflecting in front of the Sacred Heart picture above the fireplace in the living room.

The story goes that I would commence my solemn mini-novena while the 9 o clock news was on the telly, blessing myself constantly and gazing towards Jebus with pleading eyes. The routine was so vigorous in its exercise of grace and piety that my mother was sure she was raising a little nun.

Not so. I remember all this very well and it coincides with the time when I discovered that people got sick and they died. I was most disturbed by the fact that it appeared you could just be snuffed out in your sleep and so bedtime became a point of serious distress.

For this reason I made it my business to square things with God every night before I turned in, in an effort to make sure he didn't take me. I would like to say I prayed for my family too, but nah, it was all about saving myself back then. As a seven-year-old, I was quite self-involved.

But that was a simpler time when you believed what you were told to believe and while admittedly I had more faith in James Bond Jr and Captain Planet at the time, I took it at face value that God existed and He was on my side.

I'm not going to get into the layers of my belief at this point - and there are many layers, which clash and come into conflict, now moreso than ever. Sometimes I believe in something greater, most of the time I don't.

What I do know however is that transplant patients may well be the human beings that God forgot to create until the last minute on the seventh day. There He was, kickin back, watching the clouds go by and He thought "Fuck, I forgot that other crowd of losers".

And just like sunday night homework, He rushed it and left us with organs that weren't quite up to the task of getting us through a whole lifetime.

Maybe He didn't bank on modern medicine finding a way to keep us ticking over with transplant surgery - or maybe He did foresee that and thought He'd like to see how things would turn out when mere mortals tried to play at His own game.

Taking an organ from one of His children and placing it in another? He was curious to observe such messing about, and curious too to see how the human-being with its weakness for experiencing guilt and with its great capacity to empathise with complete strangers would handle knowing that one person had died so that they could live.

Sadistic bastard.

Monday, May 10, 2010

Send in the Clowns

Ambitions unrealised.

So many of them, I don't care to count. And this feeling that can't be shaken that they won't ever happen now, because I'm just too tired.

It is to my deep frustration that all my childhood I was waiting to do things "when I get big", but then I grew old before I grew up. I may still be in my twenties, but I missed the middle part, the bit that lies between having hopes and gaining hindsight. That's the important phase. That's where you define yourself.

It seems like all my potential is lost. Perhaps it was stored in my kidneys and now it too has failed or is chronically impaired.

The goalposts have of course shifted considerably. Ambition to succeed has been overshadowed by a more basic desire to just survive and feel well again, but there is still regret for the life I thought I would have and the person I thought I would be.

Now I'm defined by a medical condition. Never more so than when in hospital when the semi-circle of junior doctors forms around my bed and I'm presented as an "end stage" or a "stage five".

I just wish I had known. If I had been given some hint that it was coming, maybe I would have spent less time messing around and more time making it count.

Those who know me will say 'nah, you really wouldn't have Reg'. They're probably right. But maybe I would have surprised everyone. Most of all myself.

Wednesday, May 5, 2010

A Kit Kat break...

A visit to home.

My real home that is, where I wrote on walls and reared caterpillars and once went through an unfortunate phase of ethnic cleansing with some family pets.

It brings an enforced break from online activity (newfangled inventions such as the internet and the microwave oven are not tolerated there and are in fact suspected to be the devil's business).

It also brings me into constant contact with my mother.

Being sick has brought its advantages when it comes to these visits. There was a time when on my arrival, I would be presented with a list entitled 'Jobs for Reg' and told to get to work. Chores would include everything from mowing the lawn - which isn't so much a lawn as a scene from 'Jumanji' - and painting the kerbing around the drive, which should in my view be set aside as a task for those on Community Service.

Now that I'm poorly - and such is the joy of the family at the simple fact that I'm alive - they don't make me wear my little fingers to the bone anymore. I get to sit down a lot and look out the window, which as you know is one of my favourite things to do.

On the downside, it has turned my mother into a bit of an overly alert sentry when it comes to monitoring me. She seems to be of the opinion that my condition may visibly change before her eyes and thus she devotes her days to staring at me.

If I remain motionless for more than two seconds, she'll be there at my side, poking me. "Jesus, Mary and Joseph, are ya alright?...Reg...REGGG!!!!"

If she could move her bed into my room and sit up all night, watching me sleep and checking my breathing, my heart rate and how Brendan is progressing, I don't doubt she would.

Which brings me to a relevant pearl of wisdom I wish to impart - there are few things in life more valuable than a reliable locksmith.

I realise that many would find this very annoying. It may even cause some mother-daughter duos to fall out. But I'm a patient sort when I want to be and always there has been the fear of losing her in the same way I lost my dad. Without warning.

So I put up with being mired in a technological blackspot for a few days and with the long drives with Brendan jumping around in the boot and ten boxes of fluids on the back seat.

I also endure that feeling that I am being watched all the time and the knowledge that it is only when I go for bathroom breaks (not an excuse I can call on very often with failed kidneys) that I will escape the staring competition with the woman who foolishly gave me life.

One does it for the simple pleasure of waking up in the most familiar surrounding of all and for the sense of being completely at ease that can only come from going back to what you know best.

Sunday, April 25, 2010

Conspiracy Theory #1: The government is trying to kill me

It has not escaped my attention that at a time of recession, people like me are a blight on the nation. I mean sick people - those of us who require costly treatments that weigh down the national debt and who don't contribute much by way of taxes.

When I say it has not escaped my attention, this is primarily because some who claim to love me and to be my friend call me names like "leech" and "parasite on society" and say things like "would you not just go quietly now and save us all a bit of money". With friends like these, etc, etc.

By my reckoning, if this has occurred to the knuckle-headed humans I hang out with, then it has to have occurred to at least one bitter and twisted junior civil servant at the Department of Finance. Thus my first conspiracy theory which I present here today. The government is trying to kill me.

My proof for this is a mixture of the circumstantial and the far-fetched, but I'm keeping notes on all strange happenings just in case I ever need to present myself at the European Court of Human Rights. Or in case I ever get my number one wish which is to appear on RTE's 'Would you Believe'.

I don't wish to document al those happenings at this point in case Big Brother is monitoring my blog, but here's one example taken from my diary last summer:

"June '09. Admitted to hospital to await surgery to implant catheter in tummy. Nurse meets me and tells me I have a whole ward to myself at the very end of Unit 1. Initial delight turns to suspicion. You never get a ward to yourself. You always have to make like a sardine and cram yourself in beside Granny Bonkers and Great Aunt Lunatic.

It soon becomes clear that they want me isolated. They have a so-called "high security" male patient in the unit also.

4.20am Awake to find mental man standing in the middle of my ward. I scream. The guard who is meant to be minding him shuffles in and apologises. Inspection of room in the morning reveals a strange substance spilled all over the floor. Anthrax?

Day two. Wander to TV room for some light entertainment. Mental man enters, accompanied by nurses' aide. He is writhing around and suddenly lurches towards me in an attack. Were it not for my being so nimble and gazelle-like in my motions, it could have got ugly.

I resign myself to steering clear of the TV room, sleeping with one eye open and telling all lies necessary about how I am feeling in order to secure my discharge.

Suspect said patient was an agent of the government, sent to knock me off. They do not want another dialysis patient in the country. Must avoid admission to hospital at all costs and ensure when time for transplant comes that I am accompanied at all times. Preferably by an ex-army type or someone trained in the use of pepper spray and high voltage stun guns".

Sunday, April 18, 2010

Some Things I've Learned

I'm sure there are still many things to learn, but these are some pointers I've picked up...in bullet point form (obviously)


# Looking for answers on why you got sick - and finding them - doesn't do anything to make you feel better. Knowing the source doesn't change the present reality.

# You should not distract a junior doctor while he is trying to insert a needle in your arm. They don't sleep much. Concentration is key or expect to see much blood.

# Ear plugs are the difference between sanity and madness when in hospital

# The little, material things in your life don't matter

# Worrying about the accumulation, security and improvement of the little, material things is what normality is and you will miss that

# You can get used to anything, no matter how difficult, no matter how alien to what your life was like before.

# One day you will find yourself speaking effortlessly about medical terms and procedures and having yourself opened up and patched back together and it will shock you how ordinary those words now seem.

# The easiest way to pass time in a waiting room is to size up the others around you and try and guess what's going on with them. It's far more interesting than outdated magazines.

# Consultants will always want to shake hands with you at every appointment, even though you have been introduced and he/she knows every detail about the inner workings of your body. I think this is an etiquette thing.

# Waking up from an anaesthetic will grant you the most disorientating, queasy moments of your life. You will vomit.

# You should never, ever read about your illness on Wikipedia or on any other website. The people who write these things have a particular fondness for the term "potentially fatal" and they appear to have misplaced any favourable statistics on people who have lived with your condition and done quite well

# You should never, ever read about the possible side effects of your medication. Just take it that the operation of heavy machinery is off the cards for a while.

# When sick, you will spend your time striving to be normal. You will try to work as normal, socialise as normal, eat as normal and exercise as normal.

# The biggest challenge is to realise that life isn't normal anymore and make the necessary adjustments. When that is done, you have reached the point of acceptance.

# Nobody in your life will care about you the way your family - especially your parents - do.

# The line between those who will acknowledge you are sick and say something encouraging and those who will make you feel like Death just typed your address into his SatNav is very fine. Few people know the right thing to say, but be patient with them.

# There is an immediate level of understanding with other people who have your illness or even those who have any illness at all. Maybe cos we feel a little like the lost souls of society. A kind of sick Glee Club, without the killer dance moves.

# When you lose sight of the light at the end of the tunnel, remind yourself the pain/bout of nausea/bad night on dialysis will eventually go away. A favourite phrase I have now and one I repeat to myself a lot:
"This Too Will Pass".