Shit happens and it happens every day somewhere. That’s just life. Sadly there are times when no medicine will cure, no miracle will happen and no magic wand.

I have sat through a morning of documentaries, mainly ‘Great Ormond Street’ one of the best children hospitals in the world. Great Ormond Street Hospital (GOSH) is situated in London. It shows stark corridors and patients with bleak futures. Some never leave the hospital alive. Most cases referred to GOSH, are worse case scenarios.

It is real. It’s so informative, so sensitive and so gut wrenching with some bad decisions both from doctors and parents. I say this watching a ‘fly on the wall’ programme that rushes forwards and then back with many different stories in one 30 minute programme. With hindsight, everything is explainable and everything makes sense when you know the future. It’s a window into both the emotions and hopes of carers and parents.

We all want to live. The various medical teams (and they’re dedicated at GOSH!) want you to as well. It would be the same at any other hospital in the world. What I find interesting is watching the parents. It gives me an insight on the anguish my own parents went through. I wrote about them in my book and of course, I mentioned that english was their second language by a country mile and then some! It was a difficult time for them. Now I see it again in these docomentaries.

People expect doctors to perform miracles on very ill babies, ill children and fatally ill adults with ever-vanishing minute chances of survival and the medical opinions contradict the wishes of the parents but doctors can only do so much. Sometimes they bang their heads against the walls and corridors of GOSH because of the frustration but that’s primarily due to the parents. As one doctor said, ‘once they see the face of their baby, once they cuddle that baby, they are intrinsecly linked. That small moment of a few minutes is enough to cement a bond that can be unbreakable…”

Sometimes while watching these documentaries, I think it’s a pity the bond is unbreakable. In trying to hold on to a fatally ill child, looking at all options and still no real hope, the parents keep badgering for other methods, other opinions, more operations and all that creates is more pain for the child. I feel for the child then, they suffer so much. Some times these children are 4 kgs in weight and have to undergo dialysis. Their system is too small to handle such intrusive treatment and it only weakens them more. You wonder whether it would be better to just make them more comfortable and let them pass away?

I love the fact that cameras are allowed into the consulting meetings, able to capture the brisk discussions amongst the doctors, surgeons and hospital consultants and even the patient advocates. The discussions on whether a child gets a transplant or another heart operation or more treatment is hard to watch though damn interesting since I know that’s exactly what happened to me on several occasions. I feel for the doctors and medical staff. Sometimes it’s a no win situation. They’re human and they do cry and they do feel angry both at the unfairness of life and the exhuastive attempts that parents go to not to listen or see the obvious.

If my doctors had said  at the time of my last operation, that nothing further could be done for me, that despite my will for life, I must now realise everything has been looked at and researched and all measures had been exhausted, I hope I would’ve reminded myself that I had had a fantastic life! Difficult as it may have been to accept nothing could be done to further it. Thankfully I’m not in that position yet and I’m grateful to have been given the chance to have kept living.

Life… what a dilemma!

Do you hate that you were misdiagnosed?

Would you hate having the wrong leg cut off instead of the cancerous one? Yes, of course I did but heck that was a million years ago. I think I was over it pretty quickly after my first open heart surgery. The ‘horse had truly bolted’ as they say. Who cares how we got here, we are here now so ‘life now’ is the priority, not ‘life thirty-one years ago’. I’m not hating anything unless it’s cold mornings and even colder showers when the hot water tank blows.

Are you looking forward to a seventh open heart surgery?

What seventh heart surgery???

I’m not sure I need one but of course if my surgeons said I needed one urgently, then I wouldn’t have much choice. Let me ask you this, would you be looking forward to parachuting from a plane with no gaurantee the parachute will open? Well, it’s a little like that. You have to be realistic about your chances. I’m no different. I’m many, many years from looking at a seventh and there ‘s a chance I could be hit by a bus or a tree could fall on me or I could die of a broken heart before then, the possibilities of my heart not being the cause of my death are endless.

Most people would not be able to survive so many operations. What’s the secret?

The secret is ‘ignorance’ . If you think you can’t do it then you’re probably bang on the money! The first three surgeries. I just didn’t give it much thought. I was probably more than pissed off about it. It was all an inconvenience.

The last three, I thought ‘hell, I need to stay alive’. Not exactly sure what I could offer the world if I was fortunate to be alive after the operations but I knew I’d think of something. Your listeners do not realise how strong they are. It’s nice to be thought of as being stronger than everyone else but we all have this amazing will to live. Couple that with an amazing human body we all share (yes even the hairy ones!) we can do anything and literally survive a whole lot of pounding and incessant invassive tinkering.

Fear of death is usually on the minds of millions every day they are awake. You have died twice, which is pretty cool If I may say so. What words of comfort or insight do you have for them?

Death is going to happen whether you like it or not. Death is not painful unless you get sawed in half in a timbermill accident and the machine jams midway, it might hurt a bit then. When I died, it was painless. I didn’t feel a thing and really it wouldn’t matter anyway as whatever pain you may feel it is not going to last forever.

One thing I have learnt after all that dying is you need to be good to people before you pass away. Whether you are a christian god fearing nerd or an atheist, there is another side to death and dying too complicated to discuss here in twenty minutes. There are so many other things that would take too long to explain but somehow you ‘get it’ when you are on the other side. You sense things. I liked the ‘other side’ as some people put it and it seems we all have different interpretations, see different things and have different versions. Honestly, some of us may have had too much bourbon or morphine. It would be naive of me to say that all of us who have had NDE’s or who passed away and were then revived, have seen the promised land, heaven, nirvana, X-File HQ, whatever you want to call it.  After I died the last time, I had a visitations but if I go on record as saying that, then the mental health people will be outside my door complete with straight jacket by tomorrow morning.

Dad has given us all so much but it makes me cringe that someone could take care of me like this in the future. When we had him in hospital care, we felt so guilty that we had let him down although the staff at the time said, “he probably wouldn’t know it anyway”. OMG, my mum almost slapped them. Of course, he would know. She was right, even with his limited capacity of understanding and awareness, he would know. Today waiting for his carer to finish, it feels natural, like milk with coffee kind of natural.

My question today, is would you like to be cared for like this?

I know right down to my toes, I do not want to be in this situation if I lived long enough. I would rather leave my family to live their own lives without me. I know I am loved and it is enough for me. I can hear someone’s arguement traverse the internet.

“What if they want to look after you? It’s selfish of you not to give them that?”

Well I have only one thing to say to that, “Are you out of your mind?

Our family have never faced this situation before. Both my parents’ parents died suddenly when I was seven years old. There was no long illness involved and we never asked my Dad so he didn’t have a choice. We chose to care for him and are grateful for the continued time we have with him, even though at times he doesn’t realise who we are, it’s all right. We love him to bits!

So the difference is, I hear you asking. Well my friends, the difference is I am now well within my senses and before I lapse into a state where I am not, I’m stating I would prefer not to be a burden to any one. Heaven knows, I have been in the past.

It is enough to know that people could think of you and smile whether it’s some stupid thing you did way back when or when you burnt lunch four Christmas’s ago or just the fact you took the time out to help a neice to glue a broken doll’s head staunchly back onto its fragile shoulders.

We should all strive to leave our loved ones and friends with memories that are as warm as the gas heater beside me. Surrounding, comforting and definitely heart warming. These and many other little things we do without a thought to ourselves is what will make us immortal.

This medical clinic was chock full of people, babies in prams, nice elderly folks and the odd teenager. They all kept to themselves as most people do as they don’t feel like being particularly sociable in a medical centre. So I’m sitting there and a lady walks in smiling (actually looks lke she should be the doctor, she’s so fashionable and perky), but no, she’s here to see the doctor like everyone else. She takes a seat next to me, says hi and then proceeds to talk about the cooking experiments’ she’s had so much success with lately. She is fifteen long minutes into a ‘full on’ one way conversation before my name is called out and I leave to see the doctor.

I don’t think about her again while I’m in with the doctor. After a friendly chat, I get a prescription for Parac+codeine 500+8mg tablets for the ‘Rotar Cuff Tear’. The doctor says, “try not to comb your hair for awhile. It will aggravate the injury.” As I just shaved my head last week, I’m not sure he noticed (sometimes thick glasses really are there for a reason and not for show!). I also get Amoxicillin + Clavulanic 500/125mg for the chest infection.

So with the arm in a sling to rest up my shoulder, I walk out and to the chemist next door. As I’m waiting for my meds to be dispensed, the lady from earlier waltzes up to me and says, “There you are. I wrote that recipe I was telling you about down on paper for you,” and hands it to me. She then say,s good luck and walks out into the rain. By this stage, I’m pretty sure the rain is bouncing off her as if she has some type of vulcan force field, her enthusiasm for life was actually infectious.

I looked at this kooky recipe. Roast Duck Breast on Celeriac Mash & Poach Pear. Now it’s not like there are ducks waddling and diving all over my neck of the woods and I’m sure that I could get a duck without too much trouble but the fact that someone can come up to ou and give you a recipe out of the blue is what I thought was cool, enlightening and a refreshingly ‘nice’ thing to do. It made my day as I walked through the rain and drove home gingerly with my one good arm.

So in closing, be unselfish and educate someone at the same time. Rock on up and slap a recipe in their hand!

Of course I hated being misdiagnosed, my life would have been vastly different if the doctor had known what he was doing but the fact still remains that shit like this is still happening in New Zealand!

Last year, I took two weeks off to visit  the Bay of Islands and the KKK area (Kawakawa, Kaitaia & KeriKeri) as I like to tell folks. It’s an area that right now has a huge problem. So many of the region’s little ones are getting Rheumatic Fever that you would think nothing is being done about it. Talk to some of the district nurses as I did and you will hear they’re over worked and undermanned, not to mention also underfunded!

You would be hard pressed to get a Doctor to actually ‘swab’ your child to test for Rheumatic Fever (RF). I heard so many stories. I met mothers in day care centres and children in primary schools who had been sick and were not being swabbed despite having the symptoms of Rheumatic Fever. WTF !?  Are you kidding me or what!??

One of the reasons I’m writing about this now is because tonight some friends travelled down to Auckland with their ill child who has a sore throat. The doctor gave her Panadol and suggested she rest at home for the week. Well that’s all bloody brilliant but what about a SWAB to see if her sore joints and sore throat are the early stages of RF? Either they don’t know what the fffing hell they’re doing or they don’t care. Either way its beyond @#!%ing frustrating! It’s criminal! Sending a sick kid home to just REST UP is not on when the rates of Rheumatic Fever are climbing at an alarming pace. It’s a third world disease that is CURABLE and DETECTABLE!

Here are the symptoms (please memorise them):

1. Your child will generally feel tired
2. Sometimes there may be small “painless’ lumbs around the wrists, knees, elbows – this is called Aschoff  bodies (Subcutaneous skin nodules)
3. They have a rash. These are described as ‘snake like wavy’ in appearance
4. They have a fever
5. There is a shortness of breath
6. Sore major joints: knees, ankles, shoulders, elbows – these can sometimes be red hot to touch

Now if your child is ill and has more than a few of these complaints and the doctor tells you to take her home and REST UP with some Panadol. I want you to slowly lean forward and grab him or her by their collar and plant the biggest punch you can on their noggin!

Then get a second opinion!

It is so damn sad that many young people, barely out of their teens are now having to live a compromised life like I did. If you need reminding what Rheumatic Fever can do, remember: 6 open heart surgeries, died twice, spent 4.5 years in hospital and zero to F-all schooling. This is not to mention the on-going healthcare costs to New Zealand and myself. Prevention is far less expensive than the alternative, both emotionally and financially. So, ask the Doctor to do the swab!

I look at her. The face is pleasant though ancient and tired, etched with the deep lines of living at least ninety years worth of summers and winters. Her hair is shock white and softer than dandelion hairs. Her eyes are moist as they plead for reassurance, actually they are begging so damn hard I feel sorry for her. I soften my look  and try to put on the most gentle smile I’ve ever put on in my entire haphazard 46 years of my own existence.

“Don’t tell her it’s plastic!” squawks a voice from nowhere. A shuffling figure almost bent in half, clutches a hot water bottle as she saunters in to the room and takes a seat gingerly by the window. “She’ll cry and play up. You’ll see.” She says to no one in particular.

I turn to the first lady who is still staring at me as if we were the only ones in the room.

“No, love”  I say, not wanting to disappoint her by dashing her hopes or lying to her outright. “They’re not from MY garden.” I emphasise the ‘My’.

She smiles and nods her head knowingly, as she says, “They’re lovely. You are a good gardener.”

That’s what happened today while I was visiting Dad at hospital. It was sad but kind nice. It hit home to me that no matter what happens in life, whether we lose our marbles completely or just slip slowly into dementia, most remember the happy moments. The mind is a fantastic thing, even in the elderly I met today. Their minds still try to protect them.

Looking to put forward things, memories even ‘imaginings and illusions’ leave us with something, no matter how small and fleeting that captures an inner peace which can make us smile and make a long sunny day go by while a winter wind rages outside. It made me walk outside into a chilly wind and plan the things I want to do. The happy memories I want to create and remember. To use the time I have.

Do not piss around until it’s too late. Look for love. Look for  humour.  Look for the beauty in life!

Did I really say that ? “end it al!” Well my friends it is what I have said because if anything I am honest in the book. Reading this right now is not going to help you if I bullshit my way through it all now is it? Nope, it isn’t!

Let’s look at what would happen if you did end it all. And by end it all I mean, give up hope, don’t try, stay in bed, mope and generally be a pain in the ass for everyone else around you, or God forbid, kill yourself.

Your family will miss you like crazy, fork out for that damn ‘sterile’ funeral that people will hate – because let’s face it people hate funerals. It’s usually in a sad, cold place where there’s no heating and the seats are hard as frozen untreated planks of wood. You will have a lot of polite futile speeches about how you were NOT such a bad person and there is possibly a great chance that people will say nice things about you. Of course, they’re the people that haven’t seen you in awhile because you already pissed off the folks that were in close proximity during the last year or so (yes, the folks that will probably end up paying for your stink funeral!).

I dare say that although there will be some genuine sadness there will also be some fake people that will just see  the funeral as another inconvenience to them, especially if it’s midweek. You just can’t win can you but thats O.K., you gave up on life and a lot of food and people hated you for it. Why stop now when you’re dead, you may as well carry on pissing them off!

I have known many colourful people, some were friends of friends and still I was happy to at least have farewelled them.

It’s very rare that a funeral will be followed by a wake in a bar with the free bar tab paid for in advance…damn rare but I have been to a few. On those rare occasions, even criminals (of course two out of three were colourful criminal types ) were as colourful as the day was long. Ex wives were welcomed and all had a say in the good, bad and plain crazy memories these men left behind. One wake had two Police Detectives speak with microphone in hand about the ‘larrikin ways’ of such and such. Of how one time, they had to apprehend such and such after a 20 km chase in three cars and how he bought them all lunch when he didn’t like the sandwich they gave him. It was a real pleasure, a solid day where laughter and celebrating burst through the seams of the marquee built to help hold the throng of people as the waterfront restaurant and bar simply could not take the crowd.

Now, I haven’t done it justice in trying to depict two sides of the LIVE or DIE Coin, but you can always say goodbye to life and give up or you can LIVE this LIFE you have because it can be done and be done well.

Last week, I was fortunate to be invited to workshop and speak to 200+ students studying Purple Heart for the NCEA, in seven classes in two different schools.

One college was Auckland’s elite: Kings College. A college that is seen as an Ivy league school if ever there was a definition of IVY League in NZ as far as Colleges goes. The other was Manurewa High School where less opportunity is seen despite the obvious passion and determination by the coolest hard working teachers. They are both proud colleges. I myself came from a college over the railroad tracks that envied Kings College (I went to De la Salle by the way). So I know both colleges well and appreciate their strengths and weaknesses. It’s not easy being a teenager in either school.

I had a terrific time with both colleges. There was a lot of laughter, usually at my expense and it was a humbling and uplifting week. I’m going to close off this rambling post with what we discussed last week.

It’s O.K. to feel like the road is too hard to travel and life just plain sucks! Life is like that. It can be as shit depressing as finding out you have a flat tyre on your first day in a new job or the train is late in Auckland when you need to be on time (usually happens, ask anyone in Auckland!)…

It’s O.K. to feel like you want to give up. JUST DON’T !

But in the end, no matter how much we loved him, we couldn’t provide the round the clock medical care he needed at the time. Our best intentions were not enough. They are never enough. So after much soul searching and tears both sorrowful and angry, we released him. Tama’s (Samoan for Father) life would be prolonged by 24hr medical care and we are are grateful we did it because today Tama came home!

We were all so excited this morning. His sons and daughters acting as if we were 10 years old all over again, giddy at having him home. Knowing he will not be living away from us anymore and will be going to sleep each night being cared for and loved by the family that holds him so close in their hearts.

It was a long day for Tama. Initially the hospital (mistakenly) thought he was leaving at 1pm instead of 10am so my two sisters and brother waited and waited and waited. The joy was dispersing as tempers rose. We had made a dentist appointment for Tama to check his teeth and his gums at noon, so despite having gone there the day before to organise the change over, it seemed it was not going to go as smoothly as everyone had planned for. They also had to spend an additional two hours discussing everything again including after care possibilities.

When your beloved father is paralysed and has difficulty speaking, he is completely reliant on others and it’s impossible for his children not to be fiercely indignant about his treatment. More so, when the dentist told us he had abscesses and would have been in pain for the last two years and he doubted that his gums and teeth had not been seen to the entire time he was in care. It saddened a joyous day and we will be following it up with the private care facility but at least we have him home with us now.

I must say though, that overall the family is very grateful for his care at Mercy Parklands and they are better than many private hospitals in Auckland. When Tama first needed to go into hospital, my sisters researched and with his grown up grandchildren in tow, visited and toured too many private aged care facilities to remember. There were weekends where everyone was in tears from walking through corridors trying to imagine their beloved father and grandpa living there. I think the frustration of planning only to be let down in the ‘home straight’ got to my brother and sisters today, especially when all the planning to get to this point had taken four months. A few days ago, my family ordered a giant chocolate cake with a thank you message for the staff at Mercy Parklands but the time mixup, the wait, the further discussions and then the verdict from the Dentist, certainly took the icing off the cake, so to speak.

My brother “V” has taken it upon himself to be the full-time carer of my dad with the support of the family, including my sisters, my mother & a ton of adoring grandchildren. Another bigger home has been rented to house Tama and my brother, with Tama having the lower level. We have all the hospital equipment we need for him and it’s either been bought, borrowed or rented in our quest to get him home. As he is paralysed, he needs a hoist, a special bed and his own bathroom. There is also a large family room on his level where he can be part of the daily life of his family. I just want to thank my brother V and my sisters Theresa, Siene & Annie for all their efforts and time in bringing Tama out for all of us. I have not been part of the planning. They allowed this sick person to watch but it does not lessen my understanding or appreciation of their tireless work in such an accomplishment.

As we wheeled him into his new home, he was quiet. Everything must have been alien to him except for the beaming faces of his lieutenants… his children. This is what ‘family’ is. We grow up together. We share dreams and disappointments. We get angry at each other and then in the same breath, we say sorry to each other. At times, we antagonise and talk ill of each other. We are let down by each other but then surprised by our generosity and unselfishness to each other. I have seen angry words spoken and swearing black and blue never to say another word to each other again. Yet, we would die for each other.

I know my family is not rich in money but we have everything (bar a family dog) that we need and I consider us rich. If the criteria for being rich was measured in love and warmth, to me, mine would be in the world’s top five. Tonight at our family dinner to welcome Tama home, finally and forever, you would have thought that the Rockefeller & Vanderbilt families were sitting around laughing, albeit wearing brightly coloured ie lava lavas and eating chop suey and rice. In the middle, was Tama (aka J P Morgan) smiling as he sat in his lounge chair, his hair thin and grey yet his eyes moist with emotion.

We are now on a new journey and we know it will not be easy, but we have love and we have him home where he belongs. Everything is as it should be.

Actually painting an entire prison roof, looked a whole lot more interesting than the programme list on a Thursday night!

So the choices (since I’m still in TV rant mode) was some rubbish about puppets that form an Anti terrorist International Police Force (I know what you are thinking, it ain’t so bad. O.K. now add in country music backing tracks and a love story. Yep, that’s what I thought)  A Hannah Montana movie was the other choice. Anyway back to Shawshank Redemption. The movie only finished a few minutes ago and for some reason I realised I had never really listened closely to Andy’s letter to Red. Near the end, Red is reading the letter that Andy left for him buried at the base of the ancient oak tree. Anyway, a line in it jumped out at me.

“Remember, Red. Hope is a good thing, may be the best of things, and no good thing ever dies.”

In our world’s history, there’s been many fine, inspirational and uplifting speeches. Wisdoms have been shared whether standing on a podium in front of a nation in the hour of its darkest moments or whether it has been whispered by a blind and deaf woman who would one day become one of America’s best communicators and most tireless campaigner’s for causes too many to list here. We have been spoilt for choice in reading and experiencing history through the words of the many different languages that exist.

And the word “hope” is up there with the best of them. I truly believe that, particularly in my case and for my friends who live all over the world. I have a weakened heart but I hope.

I hope to live. I hope to continue to help. And yet if that is not possible, as it must surely happen one day I pass away, tonight I will sleep soundly with a smile as wide as the Pacific because as Andy wrote in his letter to Red… no good thing ever dies.

Elbert Hubbard ( June 19 1858 – May 7 1915 )

I am speaking with a few people right now by email and telephone and without revealing too much personal information about them, it’s been about the inspiration to stay alive. For many, not just my new friends, the thought of risking your life to undergo open heart surgery is one of the most frightening things you could experience. You could even have a sane excuse NOT TO undergo the operation, just as you could as sooner NOT JUMP out of the airplane to experience skydiving. Tandem or solo, makes no difference to most of us ! Two exhilarating experiences and both very similar in risk and payoff, although I’ve never been skydiving but I can see the parallels.

I have a friend who is scheduled to undergo open heart surgery to unblock three arteries. How he has managed to survive so far, I don’t know. He really should have died long ago, but thanks to a dizzy spell that wouldn’t go away during a walk one Sunday, he was fortunate to find out that it wasn’t his head but his heart, that was in trouble. The result after many invasive tests is an operation scheduled in a fortnight. You would be happy wouldn’t you? I know I would be delirious.

Not my friend. No. He’s seriously thinking about cancelling the operation. Reason – he’s too scared he’ll die.

In my experience, one of the most difficult things to get confirmed is an actual operation date and time. I’ve been re-scheduled three times in the past and it’s a devestating experience but if you understand why it happens, you can’t be angry for too long. If you don’t have private care insurance, and there’s not many that will cover open heart surgeries,  in New Zealand and Australia, government funded hospitals will take care of it. It’s not that easy though as each country has criteria you must meet and qualify for, besides being a New Zealand citizen or permanent resident. Open heart surgery is an expensive exercise and they don’t give them away or plan them unnecessarily.

If the doctor tells you, you need an operation. Their reasoning is simple – you need it to live!

This is how I look at it. If I don’t have this risky operation, I will die anyway. I will miss my family and loved ones and I will never see them again until everyone is in heaven. If I ever needed further encouragement, I thought about my children or someone I loved dearly. We all have at least one person we love.

I said to my friend, you have loved living and being alive for almost forty-three years. If you don’t want to experience another forty-three, DONT have the operation. Cancel it. Kill it dead now and let someone else have that date and time. If you don’t want it, then don’t take someone else’s time. That medical team could just have easily assembled for someone else’s life saving operation.

My surgeon told me the reason I was re-scheduled three times “was because there was someone else that needed the theatre more than you. Hard to believe I know, but they were emergency case’s.” Picture me lying there at five am on a gurney, ready to transported to theatre. Iodine brushed over my bare, shaved chest, wearing one of those surgical paper caps on my head and wide awake. I’m pumped up, excited and scared all at the same time and then five minutes later thinking, “gosh, I was so close to my operation…damn it!”

Even then, you can rise again. Even then, you can overcome and be ready again and for those people who have undergone heart surgery, you know what I’m talking about. You did it be before, you can do it again. Just think of your loved ones!

The Beatles summed it up nicely.

There’s nothing you can do that can’t be done.
Nothing you can sing that can’t be sung.
Nothing you can say but you can learn how to play the game
It’s easy.
There’s nothing you can make that can’t be made.
No one you can save that can’t be saved.