August the 20th is always a tough day. It’s the anniversary of my brother’s death and I always phone home. It’s hard to hear your mum cry from 7,000 miles away and not be able to give her a hug.

David McKenzie (1968-1994)

David was born in October 1968 with Cystic Fibrosis, a genetic disorder that affects the lungs, liver, pancreas, and intestines and of course has a major effect on virtually every aspect of it’s victim’s life. At the time, there wasn’t a lot known about this disease even by doctors and he was mis-diagnosed for the first two years of his life as suffering from colds, flu, suppressed immune system, asthma and God knows what else, before a canny GP referred my worried parents to a consulting professor at Auckland Hospital, who was delving into CF and recognized the symptoms.

Once a correct diagnosis had been made, David had to start a regular programme of hospital visits, which lasted the rest of his life. We moved out of the suburbs of Auckland, down to the rural environment of Te Puna, just north of Tauranga when I was six and David was four. My folks felt that the fresh air and wide open spaces would be good for him and they were right. Hospital trips back to Auckland hospital (now some 200kms away) reduced from weekly to fortnightly, then eventually became monthly, but not for some years.

Every fortnight there would come one Friday evening after we had returned home from school, where we would all bundle into the car and drive up to my grandparents place to stay the night. The following morning David would attend his hospital appointment.

The hospital appointments varied to a small degree, but for David were mostly the same endless list of tasks, seemingly designed to induce pain and strip him of his dignity. First he was placed on an IV-drip for two hours and force-fed pills beyond count. Then a course of hard-core physio, where his back and chest were literally pounded for up to an hour, in an attempt to loosen up the accumulated fluids enough to expel them from the lungs. This was followed by a draining exercise, where David bent over the end of a hospital bed, his body from the waist up, hanging upside-down so he head almost touched the floor. Sometimes he had to do this for up to an hour, his face going purple as the blood rushed to his head.

Beyond the treatment, there were the tests. David and other kids like him were press-ganged into the hospital CF research program, which was trying to identify a reliable genetic test (to determine if someone is a carrier of the faulty gene) and whether they liked it or not, they were to assist research staff as guinea pigs for many years to come. There were blood tests with test tube after test tube filled, sweat tests conducted using low-level electric shock treatment to induce sweat. Every time the poor kid turned round some medical person seemed to want him to stand up, sit down, roll over, stick out his arms, give samples of this bodily fluid or that skin scraping.

Anywhere between 2 and 4 hours after we arrived, David would leave, with the inevitable sticking plasters over needle marks, clutching this month’s prescription, which he and my mum would take to the hospital pharmacy to be filled, while I walked down to the car park with my dad. Then we’d pile back in the car, pick up Mum and David outside the pharmacy and either head back to my grandparents or head directly home, only to turn around next month and do the whole thing over again.

In between visits, David had another regime of pills to take before and after all meals (I once worked out that he took up to 70 pills a day), a de-mister, from which he inhaled steam laced with antibiotics, looking like a Turkish sultan puffing on his hookah, daily physiotherapy and draining and a compound called Myverol which tasted like runny candle wax and had to be spread on bread and eaten between meals. CF is hard on the digestion and David was understandably a very fussy eater and often had no appetite at all. Many foods contain saturated fats which his system found hard to cope with. This made him very thin and he had to dig deeper than the rest of us to find reserves of energy.

On top of the hospital and between-visit home regimes, he was also expected to work on the orchard, do chores, attend school, do his homework and all the other things that a kid growing up in the country is expected to do. When the harvest came, he was expected to do his share of both the picking and packing. Between times, there was never a shortage of jobs to be done round the place and he got drafted by my Dad as much as I did.

This routine (to a greater or lesser extent) went on for years…and in all that time, I never heard David complain about the cards life had dealt him…not even once. I know he wanted to – sometimes, I would catch a look in his eyes that spoke of the pain, anguish and indignity he was forced to endure, then he would bite his bottom lip and look away from everyone (at a wall, out a window, at the ceiling) and when he looked back, he had somehow wrestled it under control again. There’s only one term for it: courage. pure, undiluted courage.

Compared to my brother (at least in terms of pure teeth-gritting determination) Jesus got off lightly and Superman was a fairy!

David loved to cook and was very good at it. During one school holiday break when he and I were seconded by my mum to domestic duties during a particularly busy time on the orchard, my folks came indoors from a hard days work, to find a splendidly laid table, complete with candles and wine and we sat down to some truly sumptuous meals. By comparison, my efforts were of the “Baked beans on toast” variety. David wanted to be a chef, but his illness precluded this as a career possibility because of the cooking fumes, smoke and the like.

Beyond his seemingly limitless reserves of courage, he was a real character. Although he struggled throughout his academic life (mostly due to all the time off school for hospital and such) he was far from stupid. He inherited my dad’s aptitude for mechanics and mechanisms. One day when he was off school ill (and had been confined to bed under the threat of dire punishment from my Mum if he was to surface), he pulled his old-fashioned table clock apart until his bed was littered with cogs, springs, tiny screws and other mysterious metal bits from the clock’s inner workings. Then, with perfect precision, he assembled it all, with not a single part left over.

He had a rapier wit and could easily hold his own in most conversations. Woe betide you, if you pissed off my brother, because he could cut you in half with his tongue without blinking an eye.

Whenever we argued, I invariably lost and sometimes when he cut a little too deep for my liking, I’d lose my temper and with a bellowing roar, I’d chase him out the back door, cursing and swearing (for which my dad would clip me round the head as I passed) and down towards the back of the orchard.

He’d continue to taunt me, laughing merrily all the time and staying just a step of two ahead of me. This of course made me even madder and I’d redouble my efforts to get him…but he would always make the first row of citrus trees and from that point he had won totally. I could sometimes run him down over open ground, but as soon as we reached the trees he would duck and dive, dodge branches and weave between trees, changing direction without warning, much the same way as a rabbit does when being chased by a dog. I was bigger and slower and eventually I ran out of puff, while David returned to the house as a victor, having once again vanquished his foe!

He didn’t always have it all his own way (and he got a good hard thump or a rotten tangelo rubbed over his head on the rare occasions where he made a mistake and I caught him), but if I’d ever bothered keeping score, I’d have been mightily embarrassed at the gulf between his tallies of victory and defeat.

We had very different personalities and truth be told I sometimes resented him for all the attention he got (not being mature enough to accept it was because he needed it!). Likewise, I think he envied my relative health, the fact I was the oldest and got to a fair bit of stuff first. This translated into quite a nasty sibling rivalry, which continued throughout our childhood years (it got so bad that by the time David prepared to start college, my parents had already firmly decided to send him to another school, far from the clutches of his bullying older brother).

It was to my eternal regret, that it wasn’t until I left school and started work that he and I finally buried the hatchet and started to develop a mutual respect. Perhaps it was because we had both established ourselves within our own circle of friends and felt less need to compete with each other, perhaps it was just that I had finally started to grow up a bit. I only know I’m grateful we didn’t continue our little war and wish we had made the peace years earlier (if we had, we could have run rings around my folks! )

In his mid-teens, David developed an interest in amateur dramatics and had minor roles in a number of local rep productions. I ended up helping out backstage a bit and so we got to spend a bit of time together between his scenes. His wit and natural charm quickly endeared him to the better class of luvvies and he often got scolded by one director or another for making the girls giggle backstage.

One morning he woke up suffering from a fever and by lunchtime, his temperature was so high that mum called for an ambulance. He became delirious, not recognising any of us – or even being able to recall his own name. Then, just as quickly as it arrived, the mystery fever suddenly broke and he was back with us, exhausted, but more compos mentos. The ambulance was cancelled and he slept for a few hours. Shortly before 6, I headed into the theatre with instructions from mum to tell them that he was ill and couldn’t make it. You can imagine my huge surprise, when 15 minutes before his stand-in was due to go on, David arrived at the theatre with mum, looking pale and shaky but determined to go on. Mum later told me that he had insisted that she drive him, threatening to drive himself if she would not oblige. He performed his role on cue and then immediately took his leave, returning home to bed where he slept for almost 48 hours.

Shortly after my 17th birthday, I left home for good, moving first to Wellington, then to Auckland and onto London as my career progressed. David remained at home, close to my folks in Tauranga. He had a number of jobs, most of which he did well, but his health precluded him from many roles and in the shaky economic climate of the mid-80′s, many jobs didn’t last long anyway. He never complained, but I don’t think he really found a job he liked a great deal…certainly not enough to turn into a career.

One day while working in a local DIY shop, he suffered a collapsed lung but with his usual grit, drove himself to the local hospital. He was transferred to Greenlane hospital in Auckland to recover, but something in him started to change around that time. He began to withdraw into himself a bit and stayed closer to home, working with my Dad most days on the orchard.

Times improved and in his late teens, he did many of the things that most young men do. He bought himself a sporty little Datsun Cherry, which was his pride and joy. With my grandfather’s help, he bought a nice little place of his own, met a girl, fell in love, got married and settled down into something resembling a normal life. We kept in touch by letter and occasional phone calls and he flew down to Wellington to spend a bit of time with me.

When my dad started a small trucking/transport business, hauling fresh produce from the local farms to markets all over the North Island, David joined the business, initially accompanying my dad and acting as a relief driver so my dad could get some rest and later on driving solo. He was an excellent driver and seemed to enjoy the sense of solitude and responsibility. No matter what was thrown at him (mechanical breakdowns, flat tyres on a full load, heavy storms and severely flooded roads to name a few) his natural fortitude kicked into play and he got the problem dealt with.

In 1994, his health started to take a turn for the worse and he was admitted back into Auckland hospital. I flew home and visited him at his house after he was released from hospital and returned home to convalesce. We talked around his health problems, but never directly about them. He seemed to know that the end of the road was in sight, but still wanted to walk the last few miles and see the journey to it’s very end.

A week after I returned to the UK, David was re-admitted to Auckland Hospital and on August 20th, 1994 he passed away.

His funeral was held about shortly afterwards and was attended by a huge crowd, which packed the chapel to standing room only. His life was a lesson in courage, strength, inner hope and unbending, uncompromising determination to meet any challenges head-on, without complaint.

14 years on and I still miss him…

And so, on the 20th of August every year I remember how he died.

The rest of the year, I try hard to remember how he lived.

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