The Twenty Ninth Year - A Schwannoma Diary.

Where to begin with this...

So...I've had to digest a lot of news in a short space of time this past week, so my thoughts are a jumble. I'm probably going to struggle to express myself coherently here. But, bare with me. Okay?

There's a background to this story that I'll relate to you in a potted form. It's a story that began back in 1989 when I was 14 years old. 

I was a reasonably active kid. Good at swimming, average at football. Decent at cricket - though nothing to write home about. I was always a little clumsy, uncoordinated. I had a terrible drop punt and I used to trip and fall over myself a bit. It was embarrassing sure, but I didn't get too worried about it. My Star Wars game was always better than my Australian Rules game. One morning in late May, during a junior football match, I suddenly collapsed and was rendered unable to walk. After a flurry of medical examinations and a series of scans, I was diagnosed with a tumour in my spinal cord - a schwannoma. It was growing out of the spinal cord itself, it's parastic tissue intimately emeshed with the cord. It was to turn my teenaged life upside down for the next two years. 

I had two operations back then to remove the tumour and clean up some scarring that caused some issues afterwards. I had to re-learn how to walk. I had to manage a few functional issues involving my bladder and bowels and I somehow had to navigate the psychological comprehension of a traumatic experience that upended my adolescence.

I was told at the time that this tumour was a fluke - a once off. Owing to its slow growing nature, there was zero likelihood of this thing ever returning in my lifetime. Aside from a few functional issues, I should be able to lead a normal life.

Twenty Nine Years later...

I've documented my recent *exploits* here with my throat - how a dysfunctional branch of nerves in my neck caused havoc with my ability to swallow, speak and breath effectively. Having largely conquered that episode, I was referred to a Neurologist to investigate the underlying aetiology of this nerve dysfunction 

I was concerned there was an inflammatory causative factor for the whole throat thing. Some additional symptoms I'd been experiencing - including visual deterioration in my left eye, a sudden inability to taste or smell, some incontinence and *other* dysfunction - led my neurologist to want to rule out that very inflammatory pathology. We discussed Multiple Sclerosis, even Parkinson's Disease.

I agreed to undergo a battery of tests in order to build a case against these. A series of blood tests, urine, a lumbar puncture, neurological exam, an MRI. I underwent these tests, determined to get to the bottom of this mystery, because I didn't want it weighing on me any longer. This had been two years out of my life, in which - you know - I would've rathered been focusing on something else. 

I'm at a stage in my life where there's not a lot that shocks me anymore. As an Intensive Care Nurse, I've seen a fair bit - maladies, trauma, disease, the expected and the unexpected. 

I received a phone call from my GP last week, requesting that I make and appointment to see her. I sat down with her after a long night duty shift on Wednesday morning.

The MRI scan found a tumour, located in my lower spinal cord - very close to where the original schwannoma had been found in 1989. 

A tumour - that was never supposed to recurr.

I was shocked, stunned, numb.

Remember? This was never supposed to happen. 

Things have moved fairly quickly. I have met with a Neurosurgeon, and we have discussed my options, which I might say, are pretty straightforward. I will have to undergo surgery to remove the tumour. Plans are afoot in that direction and I'll be undergoing a second series of scans later this week to *map* out the exact geography and extent of the lesion. It is growing out of the spinal cord itself, so the surgical team need to know - to the millimetre - how emeshed this mass is.

At the moment, I'm approaching all this with a clinician's mind as much as I am a patient's. It's a confusing state. I've expressed little outward emotion about the diagnosis so far. Rather, I've been digesting the reports and the MRI films. I've mulled over the technical aspects of the prospective surgery. I've weighed up the chances of this thing being a malignancy. By erecting a veneer of distance between the diagnosis, I can keep my emotions in check.

This is not to say that I am completely divorced from them. This recurrence has implications beyond the mere presence of the tumour - implications that I can't bring myself to process just yet. There is, deep down, a maelstrom of emotions.

There is fear. There is disbelief. There is anger.

My mind teeters on the edge of this chaos so I'm doing everything I can to focus on the process dispassionately.

This may seem strange, but I'm more worried about more fundamental things - like, how I'm going to get through the next little while - I mean, it's bloody Christmas. I have to pay the bills, support my family, give my kids a Christmas to treasure - this Christmas is certainly going to be interesting. 

I want to get back on my feet as soon as I can. I can't stay idle. It'll drive me nuts. I can't allow this thing to upend my life again. 

The stakes are too high.

Is this a diary? I think this is a diary. Let's call it a diary.

I can't breathe now. I need to stop writing. I'll talk a little more soon.

DFA.

The Dying Wish - A Journey With Star Wars.

Star Wars is more than just an entertainment franchise - that much is clear. It's more than a popular cultural phenomenon that has stood the test of time. Because of its longevity, Star Wars has come to mean many different things to many different people. 

Here's what it means to me...

In 1999, during the run up to the release of Episode 1, I was a junior Nurse at a private hospital in Adelaide. 

In late April of that year, I encountered a patient - a young man named David - who was terminally ill. He'd been diagnosed with an aggressive cancer just a few months before and he'd been given only weeks to live. 

It was a rainy Friday night when I first met him. He lay in his bed, grossly swollen with fluid, completely bald and barely able to lift his head from the pillow. He was surrounded by Star Wars toys and, of course, my face lit up at all of the cool things he had. Alot of it was the mid 90's Hasbro merch - a couple of light up light sabers, a big arsed Millennium Falcon, some 12 inch figs and of course, those beefed up 3 & 3/4 figs that got most of us back into collecting after that long hiatus. 

Suffice to say, we hit it off right away and I was encouraged by the fact that he too, had found something of a kindred spirit in me. His smile said it all. 

Over the course of the next couple of weeks, I made sure that I was able to look after David when I was on duty and I'd bring in items from my own vintage collection for him to check out and play around with. We'd talk the films and the then EU books and of course, we'd toss theories back and forth about the possible story that Episode 1 would present. At one time, during his admission, there was a slight glimmer of hope that the medical and nursing team might be able to get David well enough that he could attend the premiere of the film in June, but it became clear that his condition was deteriorating quickly. He wouldn't get his wish.

Then I discovered something in the course of our conversations that created an opportunity to do the next best thing. 

David had never seen the Holiday Special.

He'd heard about it but assumed that it was an urban myth - the kind you'd hear about in those early days of the internet when message boards were still a big thing and the web hadn't​ quite saturated our consciousness. 

I had (and still have) a bootleg copy of the Holiday Special that I'd tracked down on one of the early iterations of eBay. When I told David this, the excitement in his dying eyes was as bright as the twin suns and so, I duly arranged for a special night where we would screen the Special on his TV, in his hospital room. 

I came in on a Saturday night - my night off. His family had gotten in on the fun and we had a spread of snacks in his room, all his Star Wars kit on display and David dressed in his Star Wars jimmy-jams. 

And we screened the Holiday Special. It was still the most wonderfully terrible piece of Star Wars even committed to celluloid (or DVD as it were), but it didn't matter. For David, for his family and the nurses and doctors who came in and out over the course of that evening, it was the best thing we had ever seen. So much laughter and gritting of teeth the worst bits. Cheers and tears at little Lumpy and fist pumps at Han and Chewie outrunning the Imperials on their way to Kashyyyk. 

For David, it was the most wonderful thing ever. Star Wars that he had never seen. 

I went to the midnight screening of Episode 1, having stood in line for hours with hundreds of other excited fans at Marion's GU Megaplex. Just as we were about to go in, I got a message from one of my colleagues at the hospital. David had died, literally half an hour before midnight. 

I went to David's funeral a few days later. He was buried in his Star Wars jimmy-jams, his coffin was draped in a Star Wars beach towel and his green and red light sabers were crossed over the centre. 


His Mum told me afterwards that they would never forget that last Saturday night. Screening the Holiday Special for him had given both he and them one last occasion of joy together.

That's what Star Wars means to me. Because of it, I was able to connect with someone during their darkest hour and share in something they could find joy in before their end. 

Star Wars brings people together. It creates memories that last forever.

DFA. 

Conversations with Darth or A Family In Two Parts.

When I was around 7 years old, my then 4 year old brother was diagnosed with Hodgkin's Lymphoma. At the time, I had little understanding of the significance of this illness on him though, over time, it became painfully apparent to me as I watched him grow increasingly ill, lose weight, lose his hair and, very nearly, lose his life.

There was a three year period during the early 80's where my brother's life was characterized by frequent hospital stays, numerous operations, hours and hours of chemotherapy, followed by hours and hours of wretching and vomiting due to the effects of the chemotherapy. For my family, it was a period of extreme emotion, heart break and near soul crushing endurance. As we lived in the country and my brother's medical care, for the most part, was in the City, my parents spent long hours on the road, travelling from rural Victoria to the Royal Children's Hospital in Melbourne, racking up the kind of miles that would make a long distance truck driver blush.

For me, it had been decided that I would stay home, rather be carted along to the City. My parents didn't want to disrupt my schooling and I guess they needed to focus on my brother without having to worry about me. So it was that I spent a lot of that time with my grandparents - both sets - and my Aunty Ronda, who had me come stay with her family, my cousins, who were about the same age.

Despite their efforts to make my life as uncomplicated as possible, it was a lonely time for me. With all of the attention being so focused on my brother, inevitably, I came to feel left out of my own family. I remember many nights of crying myself to sleep, not understanding why I couldn't be with my Mum and Dad and brother.

It's strange, the things we cling to in order to cope. 

My Star Wars fandom is something that is known to many as being kind of legendary and of course during the early 1980's, we were in the midst of the classic Star Wars era, between The Empire Strikes Back & Return of the Jedi. Christmas 1980, was perhaps one of the most memorable Christmases for me. That year, I got no less than four classic figures under the tree - Artoo Deetoo, Han Solo in Hoth Gear, the Snowtrooper and Darth Vader. Along with those I got the Yoda hand puppet (which I still own) and a generic lights and sounds star ship that I dubbed the Millennium Falcon, even though it looked nothing like that ship. My brother was all He Man and the Masters of the Universe - which were great figures in themselves and we had countless cross franchise battles in our bedroom.

Then the diagnosis came. 

I remember I had a bag that was always packed with clothing and toiletries, ready to go at a moments notice, given the unpredictable progression of my brother's cancer and the intense schedule my parents were required to keep with his treatment. And, along with that bag, I always made sure that my four Star Wars figures and Yoda puppet were ready to go as well. They had become my companions - my proxy family - and I came to rely on them more than anyone as those days and weeks and months passed by. Whether I was at my Nana and Pa's or my Nana and Poppy's or Aunty Ronda's, they would be on my pillow at night, I tuck them in and I'd invariably talk to them. 

Especially Darth. 

At one point, there was a very real prospect that my brother was going to die. His treatment wasn't working. The doctors thought they had discovered secondaries in his chest and there was a period of urgency where he had to undergo multiple, simultaneous surgeries. I don't remember how I was given the news but, somehow I had to digest the likelihood that my brother wasn't going to come home. 

I talked to Darth Vader about it. I don't even remember if I spoke specifically about it or whether it was more an esoteric conversation about life in general - but I do know that in those darkest of hours, that 3 & 3/4 inch Darth Vader was there for me more than anyone else. This guy, the darkest Sith Lord in the galaxy, and only he knew how I was feeling because he was the only one I felt I could talk to. I so feared losing my brother. I hated not being with my family. I hated being alone and no one listening to me.

Fuck cancer.

My brother survived and he got better and he came home. The trips to Melbourne tapered off and my family returned to some semblance of normal. Eventually, he was in remission and had won the greatest battle of his young life. I never forgot my conversations with Darth though. Nor did I forget how he helped me at a really dark time in my childhood. 

That's the thing about Star Wars. It has given me so much beyond the enjoyment it offered on the cinema screen. In some ways, it was the family I needed, when I was far from my own.

DFA.

The Fourteenth Year.

I can still vividly remember the first day I met him.

My wife and I - then young lovers - were spending one of those particularly romantic days together, when we were first courting. We had just moved in together and were out and about shopping for things to make our home "ours". It was an extremely carefree and gushy time so bare with me here. We saw everything through rose colored glasses. We couldn't stop kissing or smooching and I don't think we spent many moments not holding hands. It was young love writ large.

I don't think we had actually discussed the idea of "expanding" our little household, although it had come up casually in conversation in one form or another at different times. So full of limerance as we were, when the opportunity presented itself, it was an opportunity that was too cute to pass up.

We were in the shopping mall, armed with homeware purchases and grocery items, strolling towards the exit, when we heard him. It was unmistakable - a loud, high pitched "yap, yap, yapping" My then serioso looked at me with those eyes that said "Awwwww!"

The pet store was just ahead of us, a small store front that was a kind of 'blink-you'll-miss-it' affair. That was where the yapping was coming from. At the time, I was the more reluctant of the two of us. I mean, we had just moved in together and were still finding our feet with one another. But I couldn't resist her eyes. They were one of her most attractive features.

I was lead towards the the pet store and inside, it was a cramped space, occupied mostly by bird cages and fish tanks. I remember looking around for the cat and dog cages, thinking 'are we in the right place?' But the yapping started up once more and I knew, we couldn't be any place else.

So we find our way to the very back of the store and found the source of the noise.

There on a wall occupied by cages of cats and dogs and other mammals, at eye level, was one particular puppy. It could only have been him.

He was six weeks old. He was born in June. A small bundle of black and white fur, with mottled socks on his front legs and overtly tall, pointed ears. His eyes were huge, almost too big for his face. And, as we approached the glass he instantly stopped his ultimate fighting contest with the ball of newspaper, sat down on his hind legs, wagged his tail furiously and looked straight at us. He yapped twice then got up, turned his rear end to the glass and promptly shat on it, a liquid stream of poo that made me flinch reflexively. My rose colored glasses cracked a little.

I noticed then that his enclosure was kinda filthy with poo and under normal circumstances I probably would have baulked right away. But this observation was almost completely usurped by the fact that the puppy occupying the enclosure was so damned cute. Even though we hadn't even made a decision yet, I knew we weren't going to be leaving the store without him.

He was six weeks old. He was a cross breed, a mixture of Border Collie and that quintessentially Australian cattle dog - the Blue Heeler. We were told he had been born in a litter of pups from the Southern Vailes of South Australia, down among the wine barrels of the McLaren Vale Wine Region.

My then serioso was sold on him the moment she laid eyes on him. I, although a little concerned about the amount of shit he had produced in those first few minutes, was reassured after the pet shop owner told me that he had just finished a course of routine antibiotics which was the cause of his "squirts".

Cut forward to us driving home from the mall. We'd purchased a bottle of Bleasedale Caberbet Sauvignon to celebrate...it seemed appropriate.

...On my serioso's lap, was a large cardboard box. The pup lay sleeping inside, evidently worn out after the whole ultimate fighting thing and the subsequent liberation from the two feet by four feet enclosure. Though we had no idea of the concept, we felt complete. Niether of us could take our eyes off the box. We were hoping he would wake up so we could interact with him.

"What shall we name him?" my serioso asked.

We ran through a bunch of names, from the usual, dumb pet names to the more sensible ones. None of them seemed to 'fit' however. This little pup seemed to possess something special - something different. He wasn't an average pooch at all. As we mulled it over, the pup awoke to the sound of our voices and popped his head out of the top of the box, yawning generously.

My serioso gave him a loving soft nose rub.

"What do you think of Sam?" I suggested, thinking that he looked noble enough to be a Sam.

"Hmmm" my serioso mused, a note of hesitation running through her voice.

"Okay..." I continued. "How about...Simon?"

We both looked at our new puppy. There was a moment of quiet between us, then my serioso nodded.

"Simon...that's it. Simon"

It fit.

Simon from then on, has become an inextricable part of my life. I regard him as, quite possibly, my best friend. We have grown up together, an unshakeable bond has grown between us.

Simon has been there during the best parts of my life - when my serioso and I were married. I actually wanted him to wear a golden bow tie and be a part of the wedding but I was talked out of it - probably for the best. The morning walks my wife and I used to go on religiously when we lived in Adelaide Hills - Simon was there. I'm sure he woulda put his own leash on if he could. I mean, he would actually bring it to us so we could put it on him. Whenevee the very word 'Walk' was uttered he would bolt straight for the leash, hanging on a hook outside. And he wouldn't so much walk along with us as he would attempt to pull our arms out of our sockets. Thank god we could let him off occasionally. Simon was particularly spoilt - by myself. He always got one of the sofas to himself and especially loved our movie nights, especially when we got our first home theater. He is an avowed Star Wars fan - like his 'daddy' - although I think he secretly leans a little more towards the works of Tarrantino, especially recently. Simon loves popcorn - MAJORLY - and we would usually end up surrendering at least half of a bowl of hot buttered heaven to him alone. He loved the drives and the day trips we used to go on and he always had his favored position in the back seat. No one would dare get in the way of his spot on the back seat. When my wife and I moved to the city, to our new house, he didn't once fret or struggle with adjusting to the new environment. He is and always has been adaptable.

A number of times, Simon has flirted with disaster. Chewing the cords of my Playstation controllers aside, Simon once brought down some loose house bricks on one of his front paws in an attempt to get through the side gate and he did a pretty decent job of breaking it. For weeks after, he sported a bright blue plaster which he wore, reluctantly. He hobbled around like a senior citizen and made it known that blue is definitely not his color. But the paw healed and he didn't suffer any long term after effects as a result of his injury. We once brought him home from the kennel we used to favor after an overseas holiday to find a really nasty hole in his equivalent of his groin. The wound must have been sustained from him being impaled by something sharp and it became badly infected. Subsequently, Simon became very ill and it was touch and go for some time. Again, he pulled through as if nothing had happened. We never took him back to that kennel.

Simon has also been there during the worst parts of my life - my darkest hours. When my marriage broke down and I was, literally, totally alone in this city that is far from the place where I grew up, Simon was my confidant, my one unwavering support, my only friend. He was with me when I had to move all of my furniture out of the house and into a shed that would become my home for 6 months while I built a new house. There were many of those trips at really odd hours to move my life out and Simon subtly moved from the back seat upto the front passenger seat to keep me company. For a time, my wife and I had joint custody of Simon and we made an honest attempt at sharing him. But it was doing us no good. In the ensuing train wreck that inevitably happens with a marriage breakdown, I feared I would lose Simon. And I was prepared to give him up too if it meant that he would be settled and happy. Fortunately (and I was to be forever grateful for this) my wife decided to surrender him to me.

For a time it was just Simon and me. And we were comfortable - if a little homeless. I battled depression - severe depression - and Simon was there to help me pick up the pieces. Much to my shame he did a lot of picking up after me but never once did he turn away. Eventually, I met someone new and with Emily came new love and new possibilities. The house was built - back in the Adelaide Hills that we both loved so much. Simon was kitted out with a brand new kennel and our new life began. There were new places to explore, new roads to walk and new air to breathe. 

With the passing of years, I sometimes wondered how long would Simon be around for. I mean, I know dogs have a different lifespan to humans and inevitably, I knew time would catch up to Simon. But I was amazed - constantly - watching him as he passed through his tenth and eleventh and twelfth years of life effortlessly. He witnessed the birth of our first child and took to Xavier without difficulty at all. In fact, he seemed tailor made for children. When Lucy was born, Simon seemed to be just as excited when we brought her home as Xavy was. He has watched them both grow and they have have grown to love him as a part of the family. Simon has slowed down somewhat. Arthritis has collected in his hips and it's made things a little more challenging for him to do, but it hasn't prevented him from enjoying an active life and playing with the children in the garden.

Simon has given so much joy but perhaps the most rewarding thing Simon has given me was the basis for an in-story characterization of him in my novel "The Hambledown Dream". During the months I spent writing the novel, Simon was with me a lot of time, sitting on the floor of my little den, snoring away as I wrote on rainy afternoons or out on the patio with a glass of wine and the bird song to keep us company when the sun was shining. It was somewhat inevitable that I would feature him in the story. I didn't count on his role being such a popular one. People who have read the novel have told me how much they loved Simon's appearence in it and how they loved his contribution to the emotional finale. He really is that wonderful character. He has such personality and a wisdom that he conveys through his eyes and his big smile.

Last week, we received some fairly shattering news.

For the past couple of months, Simon has been visibly struggling with walking and, initially, we thought it was an exacerbation of his arthritis. It's been really distressing for him - given that he has been such an active dog - and it's been distressing for us, not really.knowing what to do to make it better for him. Things however, took an alarming turn a couple of weeks ago when, as if from no-where, a large lump developed on his hind leg which seemed to irritate the hell out of him. Alarms bells went off and we promptly took him to the vet for an examination.

Simon has been diagnosed with cancer.

Without going into the specifics of the type of cancer that he has - it's a particularly nasty one - we've been told that the prognosis is poor and that his remaining time here with us is uncertain. Painful as the decision was, we've decided that treatment is not an option. There are too many risks for an older dog like Simon and the outcome would most likely be the same. For now, we've opted to treat him conservatively - to clear up the infection in his leg, manage the tumor, treat his arthritis with steroids and make him as comfortable as possible.

Our little family has been rocked to it's core. Xavier has some basic idea of the significance of the diagnosis, while Lucy is far too young to comprehend it. Both Emily and I are struggling to comprehend it ourselves. Suffice to say we are devastated.

For now, the steroids have actually helped Simon a lot and he has regained some of that characteristic spark that so endears him to everyone. He seems more comfortable and moves much more easily. Just today, he was playing soccer with Xavy and I in the garden and he was mixing it up quite skilfully - if a little gingerly. He hasn't lost his appetite and still eats like a horse - the steroids no doubt have helped that. So long as he has that kind of quality of life, then I am happy. 

He will celebrate his fourteenth year of life on June the 26th this year. I don't know yet, if he will make it to that date. After much discussion, anguish, soul searching and tears I've decided that once his quality of life deteriorates significantly, then I will make that one final journey to the vet with him.

Simon has made an indelible mark on my life for a full third of my life. I can't imagine how my life would have been without him in it. I can't imagine how life will be once he is gone.

Simon is my friend.

DFA.

The Brave Ones: Bailey's Battle At Christmas.

As my family heads into this Christmas season, we were all confronted with the distressing news that one of our own, one of our youngest has been given a terrible burden to contend with.

The following was written by my sister in law Rachel:

"My five year old nephew Bailey was diagnosed with an aggressive cancerous brain tumor and two tumors on his spine on Thursday 9th December after being ill on and off for approx 5 months. Most of the brain tumor was removed on Sunday 12th December during a 7 hour operation at Melbourne's Royal Childrens Hospital.

 

Bailey Lang, taken December 11th December 2010 - day before surgery.

Unfortunately it was attached to a couple of important parts of his brain including the brain stem and he will now have to undergo radiation treatment and chemotherapy over the coming weeks and months. The other two tumors are still too small to operate on so his specialists are hoping that they will be able to treat them with the chemo and radiation therapy.

Bailey's Dad has been unable to work for the last 6 months because of all the doctors appointments that Bailey has had to try and find out what was wrong with him. Sadly there isn't much money left to help with the cost of Christmas for Bailey and his 3yr old sister Blayne, not to mention the cost of keeping the house going here in Moe and being down in Melbourne with Bailey.

I have opened a bank account in Bailey’s name for any donations to be used to help with expenses for Bailey and his family. I have also signed onto Paypal. At this time, I am hoping you and your family may be able to make a small donation to help this family in their time of need.

Yours sincerely,

Rachael Mayes (Bailey’s aunty)."

Donations can be made in person at any Bendigo Bank branch using the following details

BSB: 633000     

Acct Number: 141847160      

Acct Name: Bailey James Lang

Via Paypal using the following email address:

armayes@iinet.net.au

or by sending a cheque to:

The Bailey Lang Fund.

c/- Rachael Mayes

77 Newark Avenue

NEWBOROUGH  VIC  3825.

AUSTRALIA.

I had a whole other post to write in the lead-up to Christmas but in view of the circumstances and other things that are going on right now, I will jump in early and wish you all a safe and Happy Christmas. In the words of my personal hero, journalist Matt Price...


"Life is precious...hug your loved ones"


DFA.

Memory Palace.

As an avowed Star Wars geek...

...You know - perhaps I shouldn't have started this post with that sentence because, already, I can imagine a good bulk of you groaning and switching off. But stick with me here because this is a good one - I swear. 

Anyway...

I have met and interacted with a lot a like minded Star Wars geeks over the years and many of these interactions have been wonderful with a lot of mutual geeking out, talking all things Skywalker, Vader, the Galaxy far, far away and much playing with Kenner/Hasbro figurines...

Still with me?

One of the most significant of these interactions however, was one of those unique experiences that is tinged with a little tragedy. In 1999, which was of course the year Episode One was released into cinemas, I was nursing here in Adelaide and I came across a young cancer patient who was possibly the biggest Star Wars fan I had come across - apart from myself. His name was David and over the course of about 6 weeks in April/May of that year, I spent a lot of hours looking after David. 


The writing was on the wall for David. 


He was terribly ill, terminally ill as it were and everyone knew that his days were numbered. His room at the hospital was decked out with Star Wars paraphernalia, posters, toys, books. Someone had brought in a TV and video set up so that he could watch the films back to back (this was of course the Original Trilogy on VHS at that time). For a short time, while David was there in the hospital, you could step into his room and disappear into a kind of localized galaxy not so far away. 


And of course me, being a well known Star Wars geek amongst my colleagues, found myself (well...I made sure I found myself) allocated to his care most of the time. Which suited us just fine. Most shifts were me and him swapping stories, sharing collectibles and like I said before...just geeking out.

A well understood but not often discussed reality between us was the likelihood that David would not survive to see Episode One and, given his parlous condition in the lead-up to the film's release, it was highly unlikely that we could ever get him into a position where we could get him to the cinema - not that we didn't investigate the possibility mind you.

I could continue the story in words here and now but I'd like to share with you, a short piece of audio that I recorded for the Star Wars internet radio show The Force Cast. I recounted the story during a period where the Kyle Newman directed movie "Fanboys" was going through a pretty rough patch in it's development - precisely because it's own story dealt with a very similar case of someone facing death in the lead-up to the release of Episode One.

It's not a long piece of audio but even now, it says much about all that is good about Star Wars and it's fan base. 


Enjoy...


DOWNLOAD .MP3


DFA.

Dreams Of A Love Indestructable (Part One).

How could it have come to this?

He had the world at his feet, a life that was the envy of all those around him. He was handsome, athletic, he was warm and funny. He had a loving and proud family. He had many friends. He was young and, seemingly, indestructible. Approaching the end of his university degree he had a bright future to look forward to and could put his name to just about any architectural firm he wanted. It was said that he had wanted to draw buildings since he was six years old.

For this was his great love...

He loved complex problems, raw ideas that could be assessed and developed and turned into a real thing - a building, a tower, a house, a home...

He was in love with a beautiful woman who was his kindred spirit. He had secretly held a desire to ask her to marry him once they had graduated. Well...it wasn't so much a secret between Denny and Soneya than something that they wanted to wait for, once their respective degrees were out of the way and they could celebrate with their families. They had fallen in love through the guitar. He played for her, the most beautiful pieces - classical pieces, lyrical pieces, soulful pieces.

For this was Denny's passion...

He played for her songs of love, of travelling, of life, of living. Denny had the most exquisite fingers which were able to dance across the guitar as though they were floating on air. Soneya had once joked that Denny had cast a spell on her for his music was the most exquisite she had ever heard. It had hypnotized her.

Their conversation was truly synchronous. They had similar values, beliefs and viewpoints yet each of these differed just enough so that they challenged one another. Also, Soneya was studying law so Denny knew very early in their relationship that in order to be a good lawyer, Soneya had better be able to deliver a damned good argument. Denny and Soneya's debates were the stuff of legend amongst their friends but they all knew what it was all about.

For Soneya was Denny's life...

They dreamed of travelling around the world together. Of visiting obscure galleries in Prague. Of making love in a villa on the shores of Lake Como. Of skinny dipping in the Mediterranean Sea near Valetta, Malta. Of growing old together in the house they hadn't even bought yet on a hillside overlooking a quiet valley.

Now it was all about to be lost.

Denny lay in the bed now - a mere shadow of what he had once been. The life, that vibrancy that had so drawn others in had gone from his sunken eyes. His once strong and proud and face was skeletal, the skin bruised and pasty. His beautiful hair was almost gone now; a few faded tufts were all that remained. Those fingers which had once danced across the guitar, which had translated onto the page complex algorithms and intricate equations, which had held the fingers of Soneya's own hands. They are limp now, cold and barely useful. A warm feminine hand is entwined in them but he can but feel them. He no longer has the strength to even lift one digit.

It had taken mere months. A few days of feeling unwell, swollen glands in his neck. Denny had passed it off as the flu. Even though he had gotten better the lump in his neck had refused to go away. Still he ignored it for a time until it began to bother him. In what seemed like a matter of moments it had become all too serious.

Lymphoma.

Normally treatable with a good chance at cure, this however was a particularly aggressive one that had already metastasized before Denny had seen the Doctor. Lymph nodes, liver, one kidney, four ribs on the left side and most cruelly of all his brain. He was doomed from the start. Treatment was a stalling intervention only and not a very good one. All it really did was halt the spread of his dementia and rob him of his hair. Denny was 25.

The room was nice. As far as hospice rooms go. There was a pretty rose garden through the single window. Denny had looked through there sometimes but hadn't been able to venture out to appreciate them. Today, the sky was dark and brooding. A thunderstorm threatened.

A Simon Marty guitar stood on its stand in a corner of the room where Denny could see it. A gift from his parents on his 21st birthday. Just having it there was soothing. In his fractured mind he could hear his favorite pieces and it helped him to block out the pain. Now the only thing that helped was the morphine that slowly dripped into his body from a pump via a needle in his arm. At the end of the bed lay his puppy, a black and white cross breed called Simon. Curled up and fast asleep. Denny's lovely nurse had allowed Simon to be here.

Soneya sat beside him; her head lay on the bed near his arm. He could smell her lustrous auburn hair, freshly washed. Rosemary and mint. He could hear her soft breathing, even and steady. He could feel the warmth of her skin, the touch of her fingers. Soneya had been there for days...or what had seemed like days. Denny was no longer sure of time anymore. All he was sure of was that she was still there. Occasionally she would stir, lift her head and gaze at him through those wondrous eyes. Though their world was falling apart her face kept him anchored. She kept everyone anchored. Throughout their ordeal Soneya had never fallen apart. She tended to Denny's needs unfailingly. When others were losing their emotions she was there for them too with an arm around a shoulder, a hand in a hand, a loving, comforting hug.

Now, in these final hours they were all here. Denny's mother, father and younger sister, Soneya's mother and older brother. All sitting quietly, waiting...

Denny flinched suddenly causing everyone else in the room to do the same. He grimaced and attempted to move himself but was prevented from doing so. His abdomen was so distended from fluid collecting inside that it made simple movements impossible. The catheter which drained urine from his bladder frequently caused him intense pain and it had done so now.

Soneya squeezed his hand and slid hers up his right forearm, her gentle touch soothing him. Her fingers passed over a faded tattoo on the inside of his forearm - an inscription in a cursive font - Ancora Imparo.

'How could it have come to this?'

The single lucid thought punctured through his narcotic haze. The pain in his penis settled and he blinked, looking up at his family who were all gathered around his bed.

His mother and father, eyes reddened and tear filled. His sister, all teen angst and stony faced 'trying to hold it together'. Denny knew this must be ripping her apart. Soneya's mother, her brother - his best mate, similarly wooden with barely contained grief. Soneya...

Denny turned his head slightly towards her. Soneya met his eyes with hers and held them. She stroked his brow gently and smiled warmly. Oh how he wished to kiss those lips...

His breath caught in his throat, suddenly and his eyes rolled upward towards the ceiling. The room began to spin and Denny's heart thumped noisily in his ears. He was overwhelmed by a sense of panic and with a great effort he grasped Soneya's hand as firmly as he could. When he looked back to her Soneya's had swollen with tears and a single drop trickled down over her porcelain cheek. In that moment Denny knew.

It was time...

He focused on that single tear and was reminded of a line from his most favorite film of all time, Bladerunner.

'All those moments will be lost...in time...like tears...in...rain'

The tears fell freely from his eyes now and his emotions overcame him. Fear, anger, sadness and, curiously, happiness, love, peace and finally determination.

As another line from that most favorite of films entered his head Denny turned his head towards Soneya.

'Time to die...'

In that last terrible moment, when all else was spinning out of control, as lightning crackled ominously outside the window, Denny gazed firmly and deeply into his beloved's eyes. When he spoke, his voice had never sounded more clear.

"This is not over..."

And with an abrupt finality the eyes fluttered closed, the body sank back, the life dissipated. Denny was dead. Simon the puppy let out a grief stricken yelp, leapt from the bed and disappeared down the hall outside the room.

Soneya sat there stunned, the grip of his hand relaxed in hers. The warmth disappeared quickly. As their family gathered around her and held her collectively she let go of her crumbling stoic facade and sobbed uncontrollably.

Everything seemed to stop. Time, space, air, life. And nothing would ever be the same again...

Copyright © 2009 Dean Mayes