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.


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.