We're Through The Looking Glass Now - A Schwannoma Diary (#7).

It's day 2 post op now. My lines and drains are out and I am existing in a pleasant fog, supplied graciously to me by an assortment of Schedule 8 analgesics and miscellaneous medications. The bulk of the pain I'm experiencing comes courtesy of the 6 inch surgical wound they cut to access my spine as well as a headache that occasionally pounds in the background if I try to do too much. Because the lesion was intradural, I lost the bulk of my cerebro-spinal fluid during the operation. This takes time to replenish - hence the headache.

My legs can move, and I can walk - albeit gingerly - and without much confidence. But I can walk, so that is great relief number one. Since I had my urinary catheter taken out yesterday, I have managed to go to the toilet several times. It takes me a long time to finish but I can empty my bladder. I have control, so that is relief number two. I've yet to test my bowel so I can't report on that one just now. I'm keeping my fingers crossed. The other stuff - the *man* stuff? That will have to wait for the time being. But I would be lying if I said that it wasn't playing on my mind. 

How am I feeling psychologically?

At the moment, I feel drained - completely washed out in fact. I'm struggling to keep my eyes open, even as I write this - and it's mid morning! After, seeing the physio, having a shower, brushing my teeth and submitting to nursing tasks of observations, medications, wound care, I'm pretty much trashed. 

Mostly though, I'm relieved to be on the other side. This "thing" has consumed so much of my mental capacity and well being for so long, there has been no room for just living. I've neglected my kids - all their end of year school achievements and especially their anticipation for Christmas. I didn't go to get the tree like I usually do and a lot of things have happened around me. 

I mean, I've been there - but I haven't been there. 

I've neglected my wife. Emily has been holding fort, running around and trying to keep our household together, whilst tidying up all her loose ends at work, preparing for Christmas and worrying about me. She is a very pragmatic woman, not often given to overt displays of affection. She expresses her love though in her devotion to the household, the family. She often moves in a quiet way and it's easy to miss the things she does. Everything she does is done with love. 

I need to be more aware of that. 

There have been so many wonderful people who have reached out to me these past few days, from all across the world, sending messages of encouragement, love and best wishes. I'm overwhelmed with gratitude for them. 

I hope to be home for Christmas. I have to make it up to my family for all the chaos I have caused them.

I have to stop now. I'm dribbling saliva over my keyboard.

DFA.

Remembering The Lineman.

The death, this week, of country singer/songwriter Glen Campbell affected me more than I anticipated. For me, Campbell's music has always been an affectionate fixture, even if it hasn't figured prominently in my playlists. Whenever a Glen Campbell tune came on the radio, I would invariably turn the volume up.

This was especially true for the Jimmy Webb penned Wichita Lineman.

My grandfather was a lineman for the State Electricity Commission in Victoria, Australia. It was his first job when he returned home after the war (WW2). 

I remember the stories he used to tell me about driving the big old electricity commission truck that had the line barrels on its rear and how he would drive out to where the lines had broken to repair them. He was also responsible for the erection of many of the poles and wires across that remain in existence across large parts of the Gippsland country side. 

I like to think Pa was quite proud of the fact The Wichita Lineman talked about men and women like him - those who established such a vital infrastructure. It was he who introduced me to the track on his old HMV record player.

I hear you singin' in the wire,
I can hear you through the whine
And the Wichita lineman is still on the line...

Pa went onto become a night watchman at the Yallourn Power Station. He wore a uniform and a hat and worked in a station house onsite. Basically, he was the equivalent of a policeman. I have vague memories of visiting him with my Dad when he was on shift. The tearoom at the station had a jar of teddy bear biscuits and he'd often find one for me. He was a proud man.

Glen Campbell's was a voice I've known my entire life and Wichita Lineman is a song I'll forever associate with my grandfather. 

I am emotional, even as I write this.

Good things pass too frequently.

DFA.

The Writer's Emotional Investment.

I've somehow worked myself up into an emotional state this afternoon. 

In my continuing development of my latest work in progress, I've been working on the back story of my central character, Hayden Luschcombe, that involves a falling out with his father Russell that remains unresolved at the beginning of the story. 

See, Hayden's mother Lavinia died around four years before the events in the story, having suffered from ovarian cancer. His father Russell, who devoted himself to being her sole carer, died about a year later - ostensibly from a broken heart. During his mother's illness, Hayden made many trips over to Walhalla from Adelaide but often had difficulties in getting away from his demanding job in a hospital's emergency department to be with his parents and help with his mother's care.

When Lavinia's illness took a turn for the worse and Russell warned Hayden that there was much time left, Hayden tried to get a flight over but, due to circumstances at work and, possibly, some intransigence from his unsympathetic wife, he didn't make it in time. Lavinia died before Hayden got to her bedside.

Russell, in his grief, turned on Hayden and, I guess, blamed him for not being there at the last moments of his mother's life. This developed into a rift between father and son that went unresolved. When Russell died a year later, father and son never reconciled and so Hayden is left to live with guilt and regret. This is part of the reason why Hayden appears as something of an introvert at the beginning of the story and doesn't find it easy to mix with others.

Family dynamics can be really complex when cancer visits a loved one and relationships are often strained. Sometimes they can break. I was reminded of this, this afternoon as I sat trying to flesh out this aspect of the story and I couldn't help but feeling an overwhelming sadness as I considered how I am going to incorporate this back story into the main story. Part of Hayden's journey will involve him 'reconciling' with his father in a posthumous sense and I have an idea about how that will play out but getting to that point requires a bit of work. And it's not easy. 

When considering weighty issues such as these, it's inevitable that I become emotionally invested in these characters and these situations. It's a little surprising just how invested one can become. I'm not gonna lie, it's more affecting than I anticipated.

Do you find the same thing happens to you? Do you find yourself being affected by the situations you place you characters in? Tell me in the comments section below.

DFA.

The Snore Of Destiny Part Trois.

As I write this, I'm at a rather low ebb. 

A few weeks ago, as regular readers may recall, I underwent surgery on my throat to address an issue I was having with swallowing and choking - as well as an annoying snore. Throughout the course of investigation, it actually turned out to be a more serious issue than I had anticipated, involving the paralysis of one side of my vocal cords. You can recap on the short history here and here. 

The objective of the surgery was to create an area of scar tissue that would have the effect splinting my airway open so that it wouldn't flop inwards, particularly when I sleep and thus cause the snore. It was also going to address the problems I've been having with my swallowing which has, in a word, become scarily dysfunctional.

To cut a long story short, that surgery did not have the outcome we were hoping for. 

It didn't work. 

My swallowing remains dysfunctional and the snore wasn't neutralized. In fact, if anything, it's worse. 

I have tried to cajole myself along in the hope that it would all settle down, and once the healing process had run its course, all would be well. But it didn't turn out that way. 

So last week, after visiting my surgeon, I had to make a decision. 

I was presented with the option of returning to hospital and having a dual procedure that involves removing some of the tissue around my palate. This includes the uvula - that dangling, tear drop shaped piece of flesh that hangs down from the roof of the mouth and swings back and forth. The effect of this palatal flap surgery will be that it will open that section of the airway up and reduce amount of negative pressure that can be exerted on it when I sleep. Simply put, it won't vibrate and therefore I won't snore. 

The second part of the procedure is the trickier proposition. It involves going back to the area of my vocal cords that has been affected by the paralysed nerve supplying that region of my throat and removing the bone that anchors my right vocal cord. This is called the arytenoid bone. By removing it and applying the laser to that area of the throat, it will widen the airway as well as strengthen it by deliberately forming scar tissue. It will prevent food and fluid from entering that area of my airway that was sneaking in underneath the epiglottis. That's the flap of tissue that closes over my airway during swallowing and prevents food and fluid from falling into my airway. 

This is happening this week - this Friday.

The trade off?

My voice. 

I have to face the fact that this surgery will have a profound and permanent effect on my voice and my ability to speak. 

It has come to that because of the dysfunctional nerve that supplies my voice box. It won't recover from the viral neuritis that has affected it and so, what is being done now amounts to damage control. And I've chosen this route because - basically - I don't want to choke to death in my sleep because of some small fragments of food and fluid that has snuck into my airway.

I will require therapy afterwards to kinda retrain my throat and the muscles in it to adapt to this more extensive surgery. So I expect my recovery to be a lot more complicated.

But to sacrifice my speech...

Our voice is everything. It is a key part of who we are and without it, how are we to express ourselves?

I've been thinking a lot about this over the past week. Of course, expression and communication in this written or text form is so much a part of who I am & so I don't doubt that I will continue to express myself in this fashion. 

But, expression and communication is much more than simply words on a page. 

It's conversation. It's interaction with others. It's expressing ideas. It's singing shitty pop songs in a moment of abandon - either alone or in the presence of others. It's talking on the phone to loved ones far away.

It's reading stories to my children. 

I've been thinking about that one a lot. I remember a promise I may to my daughter recently that I would re-read to her The Guernsey Literary & Potato Peel Pie Society. I used to read it to her when she was first born as a way of getting her used to my voice. She always loved hearing me recount that.

What am I going to be without my voice?

I'm scared. 

...Friday.

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 Boy Who Went To Giza.

A few nights ago, I happened across a photograph of the Great Pyramids of Giza taken some time in the 1940's. It never ceases to impress me just how powerful the pyramids appear in images, regardless of when or how those images were captured. In fact, I would argue that those old sepia images carry something extra powerful in them - more-so than any high definition photograph you can find today. Anyway, it touched off a memory of a conversation I had with my grandfather many years ago.

In the late 1980's Pa revealed to me that he had a long held dream of returning to Egypt and visiting those pyramids. I knew he had been there before as a young man, but it wasn't something that he spoke very much about. In this conversation he provided a fascinating glimpse into his past that I'd not previously known.

Australian Soldiers at Giza (circa 1915).

Somewhere on that ancient, majestic structure, etched into one of the thousands of sandstone bricks placed there thousands of years ago is an inscription - "E.G. Mayes". They were chiseled there by my Pa when he was only 16 years old & was wearing the uniform of an Australian soldier at the beginning of World War 2. 

Yes - he was one of those wide eyed young men - boys really - who'd lied about his age so that he could sign up for the Australian Infantry at the outset of hostilities in Europe. By the time Pa found himself in the Egyptian desert, he was already a hardened soldier, having seen action in Palestine, Syria and Iraq. During a respite in the desert, around the time of the Tobruk campaign, he & a mate climbed to the top of the pyramid & left their marks as many young soldiers apparently did - in case they didn't make it home. It was a small, otherwise insignificant act but I got the feeling that, by then, the wide eyed optimism he had carried on this great adventure was well and truly gone. That he wouldn't make it home again was, in his mind, a very real possibility. By signing his name in that great monument, he was saying - I was here. I existed.

George.

Pa never made it back to Egypt. Diagnosed with adeno-carcinoma in 1991, his health deteriorated quickly thereafter and by 1993, he was gone. The pilgrimage remains unfulfilled.  

I would very much like to find that inscription some day...

DFA.

The Stir Of Echoes.

My grandfather owned a Gladstone bag - a robust, leather hand held case with stainless steel locks and rings for a shoulder strap. In the 21 years I knew him, this Gladstone bag was a recognizable fixture - a mark of the man if you will - which he took to work with him every night of his 40+ year career with the State Electricity Commission in Victoria, Australia. 

Whenever I went to visit Nana and Pa, this Gladstone bag would always be in the same place - by the fridge in the kitchen of their Langford Street home - ready and waiting. And on the nights he was on duty, it would be duly packed - a meal placed inside for him by my Nana along with his toiletries, tooth brush and paste, a stainless steel comb, his wallet and keys. Off he would go to work as a night watchman.

For years, I thought this Gladstone bag had been lost in the moves my grandparents made after Pa retired from the Commission in 1983. 

Their first move was from the Langford Street home to a newly built unit in Saxsons Drive in the mid 80's. As often happens, there is a tendency to down scale to save space or because things are no longer needed. 

My Nana further down scaled after my Pa died in  1993 as she sought to de-clutter. She did so again just a couple of years ago when Nana decided her health and well being would be best served by moving into a independent living unit. The Saxsons Drive unit was sold. 

It wasn't until my Nana asked me, very recently, if I would like to have it that I realized the Gladstone bag remained very much in her treasured possessions and, of course, I was honoured to accept her offer. 

For me, the Gladstone bag was such a tangible reminder of who my grandfather was and I reassured Nana that I would treasure it as much as she had for all those years after Pa died. 

Dad delivered to me during a visit home in October 2012 and, right away, I felt the impact of now being a custodian of Pa's Gladstone bag. It was then, and is now, a little worse for wear. The interior has a lining which has torn a little from the seams and the leather needs attention. But as is the case with all things that were made back in the day, it remains sturdy and functional. 

When I got it, inside I found an old stainless steel comb - the same one that Pa always took to work with him. It still has the faint whiff of bryll cream though I am sure that my mind is conjuring up much of that scent. There were some old keys that I assume fit locks in the old Langford Street home. There was an old school bottle opener which I have proudly attached to my keyring and now use proudly with my own beers and, perhaps most significantly, the last wallet Pa ever owned remained inside the bag.

The leather wallet is a veritable time capsule containing ephemera that corresponds with a period in the early 90's when Pa was told he had cancer. There's a card from the Latrobe Valley Hospital showing his blood type, dated 1991. This corresponds to the initial medical work up Pa went through in preparation for the rigorous treatment he would undergo later in an effort to stave off the cancer. There's a scrap of paper with the name and contact details of the Veteran Affairs Liaison at the Peter McCallum Cancer Centre in Melbourne written in Pa's own hand writing. This piece in particular is significant as I hardly saw much of Pa's handwriting. 

Whenever Nana and Pa went away on their yearly grey ghost migration, the post cards I got from them were always written in Nana's handwriting. I think there is one post card (which I still have) that's written in Pa's handwriting. That is why things like this are so precious - both as a tangible sample of Pa's own hand but also his state of mind at the time this was written.  

And there's his Returned Servicemen's League Membership Card - which, ironically, was valid until the end of '93 - 10 months after he died. 

Curiously, there's also a receipt for accommodation for 2 adults at the Cardwell Marine Hotel, dated July 1973 - 2 months before I was born. How that survived in Pa's possession for so long is not surprising because Pa was always keeping receipts like that.

But among all these things that have survived the two decades since his passing, one piece of paper carries something more precious to me than any jewel. 

By the middle of 1992, the writing was on the wall for my Pa. The cancer - having metastasised into his right shoulder when it was first discovered - made the inexorable march through his body. We all knew how the situation was going to play itself out but I don't think I ever understood what was going on in Pa's mind. Deep inside a pocket of the wallet, separate from all the other bits and pieces, cards and reminders was this scrap of paper. 

Written in Pa's own handwriting, it is a passage which I can't determine is original or borrowed. Regardless, its impact is powerful. I can only guess that it was written some time in 1992, at what was undoubtedly a dark hour in the life of my Pa. Faced with the brutal reality of his own mortality, knowing that his remaining time on this earth was short, his focus remained on that which was most important to him. His wife of 48 years...

...and possibly the Butcher.

Having met during the worst days of WW2, George and Dorothy Mayes experienced the full spectrum of the human experience. They raised three good children of whom they lost one far too early. They built a home and a life in a proud working class town and revelled in the lives of their children's children. They travelled together, looked after each other, laughed, cried and and encouraged each other. And in the end, there was this...a small devotional script, a message of feeling from the inner most thoughts of my grandfather's mind. 

These are the stir of echoes that continue in me...

DFA.

Rita - Guest Post by The Junkenstein.

I am really proud to feature this week, a scribe who I think is an amazing writing talent. 


Andrea Costanzo resides currently in Northern Italy and he is one of those rare individuals whose ability to communicate beyond boundaries is something quite exceptional. Andrea and I have enjoyed many conversations over the past couple years. We have discussed writing, life, depression and happiness, music and madness and all points in between.


Writing as The Junkenstein, Andrea is the persona behind the blog "Making Angels Cry" and, more recently, the weekly music podcast "The Junk's Trunk" in which he show cases some wonderfully eclectic music from around the world. He is this kind of explorer, if you will, of life as we know it.


Late last year, Andrea produced a piece for Making Angels Cry that, quite literally, blew my mind. Entitled "Rita", the piece was an emotion charged vignette of a woman whose life was marked by tragedy, struggle, torment and pure love. It's power lay in the unpolished beauty of it's voice, the rawness of it's style and the impact of it's protagonist's presence.


After talking with Andrea, I asked him if I could feature this piece here and he has kindly given his blessing.

Rita.    

by Andrea Costanzo.

There was this girl. I dont know what her dreams were. She never told me, really. But when she was a kid, she was raised in a loving family; her, her sister, her father and her mother.


They were dirt poor, and not in the way people use the word today. They were seriously fighting each day to survive. The mother worked in the rice planations. It was a nasty job. You were stuck in swampish water all day, surrounded by water snakes and it slowly destroyed your back. But it got her money to raise her kids. Her sister was a "special" kid. No clear defnition of what she had, she was normal, but she had a mind developed slightly slower than the rest.


The father - who the girl loved more than anyone else in the world - was a worker in the train station and tried to make ends meet with other work as a handyman.


They loved each other. One day a form of illness, maybe meningitis - no one was sure of anything back then - it took the younger of the girls. She fell asleep. And she died.


After a while, the mother, broken down by grief, got hit by leukemia. She died too.


The girl, whose name was Rita, and her father were each other's world - the beginning and the end. The man did everything he could to full his daughter's life with love, to be enough of a family for her, to be her strength and to protect her from the pain of all that loss.


Rita had grown strong, intelligent and witty. She was a brilliant student, although she never went to University cause she couldnt afford it. She found a job quickly though and was great at it. The father was proud.


She also had started dating the son of a rich family. He wasn't a bad guy. Weak perhaps. A bit spineless - broken by a family who raised him with a steely disdain for him, his fists and his anger. But he loved her, it seemed, and he could've made her ... maybe ... happy?


Yet her father drank too much. Pain is a bad beast to cage. And that took his toll. He died eventually, of liver failure.


Rita was left alone in the world. All she had was this man she was dating. He seemed to love her, and she loved him back with all his flaws. Maybe his family could have been a family for her too. One that gave her love ... security.


It didn't happen. The two married. But the man's family always hated Rita and did everything they could to humiliate her ... hurt her ... and make her life miserable.


It hurt. Because this man wasn't on her side. He was a slave to his family, too scared to protect her. 


Too weak to react.


And then they had a baby. And Rita loved the baby the moment their eyes met. That baby was all she lived for. If only her family was there to see him, they would've been so happy.


Her husband's family kinda rejected the baby too. But she would defend him at any cost. Even if she was completely alone in this.


And the year passed. And the solitude and pain became stronger. She started drinking more and more. Her husband became meaner with age, he never understood how to be a husband or a father. All he could do was yell or say cruel things. Or simply say nothing at all. He would disappear when he was needed. Left her to do everything.


And the more difficult her life became, the more she drank.


And when the baby grew, he drank too. And he disappointed her as much as a son could. He went into drugs, failures, and all the mistakes a son can do.


And she just broke...


Rita became a wreck. Drinking all day and night. Embarassing herself. Becoming a problem and a reason for her husband and son to point their greasy fingers at her.


She was a good mother but with every drunken moment of hate, those memories of love got erased.


She did things that slowly destroyed the love that her son and her shared.


And it turned, maybe to hate.


But when she visited him one day, barely walking, unkempt hair, aged beyond her years, crushed by alcohol, pills and cigaretetes and so many attempts at suicide... 


She asked him about his coughing. His flu. She gave him a homemade remedy.


And while he hated all the hurt that she brought to her life via the bottle, he could not stop his heart from shattering, seeing her like that. He would ask her to get checked, but she refused.


All she wants now is to die. And maybe join her family, somewhere. What is left on this earth has hurt her so much.


And when they parted, his heart ached so hard.


DFA.

Copright © 2011 Andrea Costanzo. Reproduced with permission by Hambledown Road Imprints.

These Are The Days - My Christmas Message.

This will be my last post for 2011. A couple of weeks ago I managed to catch the second part of a documentary about the legendary rock band Queen called "These Are The Days". One of the most poignant images/footage from this doco was some rare video footage shot of Freddie Mercury during the music video recording of the song "These Are The Days Of Our Lives". By early 1991 Mercury was critically ill as the result of the AIDS virus and rarely had he been seen publicly.

In what I regard as one of the most courageous performances committed to camera, Mercury pulled himself out of bed and shot the video for the song against fairly incredible odds and the result is perhaps one of the most emotional I can think of that I've seen - perhaps ever.

I struggle with Christmas. I don't enjoy it and I usually find that it is a time of considerable stress - mainly due to the nature of my work, which tends to quieten down this time of year. But Christmas to me, was long ago hijacked by commercial interests hell bent on shoving it's - actually their - meaning down our throats. So much so that the real meaning has been lost. I find little to like about Christmas to be honest.

Recently however, I have resolved to observe Christmas more through the eyes of my children and both I and my serioso have constructed a Christmas that is less about the rampant consumerism and vapid commercialism and instead have focused more upon the importance of us as a family unit. We've observed the Christmas story as per the Bible because that's what the core of Christmas is - but it is the importance of love, of remembering the times in your life in which love shone through and nourished you and imparting that love onto your children that is, in my mind the most essential ingredient. 

I have to say that, I am more at peace this Christmas than I have been in the past. 

But it's to the words of "These Are The Days Of Our Lives" that I have drawn the most meaning in the past couple of weeks and I have found the most comfort in those. The song talks of life and love on their most basic terms and with Mercury's impassioned delivery in his dying days - they say more about what should be at the heart of times like these than any other message could. 

Watch the music video below (you may get a message asking you to click through to youtube itself - sorry about that) and just allow yourself to accept the simple message contained therein. It is delivered with an honesty and a full heart and I challenge you not to be moved. 

To all of you, I wish you a safe and happy Christmas among those you love the most and I hope the new year brings you serendipity and peace. And, in the words of Dave Allen - 

"May your God go with you".

DFA.

Discovering The Tortoise Collar.

I had this whole other post I was going to write this week...in fact - I've had several posts lined up over the past few weeks but I haven't had the heart or the mind to write them. I've lost the drive for writing just at the moment - something which is depressing me a lot. But other things have taken over which are far and away more important - and saddening right now.

We finally got an answer to the mystery that has been our daughter's crooked neck this past week. Those of you who visit my site regularly may recall a couple of posts I wrote last year when we first began observing a distressing head tilt and generalized stiffness in our infant daughter. The symptoms became all the more alarming when Lucy started having long periods of neck stiffness and visible discomfort that would last for several weeks at a time before abating somewhat. She would enjoy a short period of relative freedom before relapsing into these episodes again.

Over the Christmas period, we began to notice that Lucy's sleep patterns were broken by these terrible seizures that would come out of no-where and cause her to jerk and spasm for long periods of time before settling too. They'd occasionally happen during waking hours but they were much more visible at night. Suffice to say, it's been bloody awful to watch.

Well, after seeing a neurologist in Adelaide, who specializes in children, we came away with a rather distressing diagnosis - benign paroxysmal torticollis of infancy. The disorder is so rare that, in the words of our neurologist, he has seen maybe one case in six years.

This syndrome usually becomes apparent from the age of about six months - right at the time that many infants are beginning to hold their head up on their own. It is characterized by the alarming head tilt which, in itself is problematic because it pulls the musculature of the head and neck out of sync, resulting in associated problems that require physiotherapy to correct. We are told that the reason for this head tilt is because Lucy is experiencing severe migraine headaches - severe enough that they cause her considerable pain and exhaust her easily. Along with these headaches are pallor, sweating and generalized stiffness, poor sleep and in some cases seizures. Treatment for the symptoms is limited and sufferers of it don't readily respond to pain relieving medication, partucularly in the case of the migraines.

Now the real kicker with this syndrome - lets call it BPTI since wanky monikers are often given over for the sake of brevity - is that we can expect Lucy to have to deal with it up until the age of 5 years, after which time it should taper off to nothing and Lucy should be okay.

Should be okay...

So in the meantime Lucy has to endure these extended periods of suffering and there isn't a hell of a whole lot we can do to alleviate her pain.

BPTI is one of those syndromes for which not much is known about it. It is part of a family of benign (an oxy-fucking-moron if I ever saw one) neurological disorders in children that have no apparent causative factor and just seem to pick their subjects randomly. Of course, medicos take grwat pains to stress the benign part of the descriptor but when a parent is holding their infant daughter in their arms and she is seizing as though attached to a faulty electrical cable, screaming in pain - there is nothing fucking benign about it.

It's not all bad though. Lucy remains a blissfully happy child with a mischevious streak which is becoming apparent - even on her bad days. She is hitting her milestones as we would expect and, although developmental delays are a concern with BPTI, we are hopeful that Lucy will be okay. If anything, it has served to strengthen our resolve to be as attentive to her developmental needs as we can.

In the meantime, we continue to see a physiotherapist who specializes in children and who has a wealth of experience with the singular phenomenon of torticollis (the neck part). By keeping Lucy's neck muscles supple, we're hoping to prevent any lasting damage to her neck. We also intend to explore some alternative treatment modalities which will complement the treatment she has had thus far. Whilst I'm wary of many of these so called therapies, I don't discount for a moment the value of some of the more universally respected Eastern modalities which have proven effective.

I've shed tears - more than a few these past few weeks and I have struggled to absorb the diagnosis with all it's ramifications for the near-term. I'm angry, grief stricken, powerless to intervene or to protect her from the awful pain Lucy goes through each time things get bad.

And yet...

Encouragement and hope have come from the most unlikely of places.

Whilst conducting a round one evening, last week, on the block at the prison I have been nursing at, I was overcome by emotion and struggled to regain my composure for fear of being laid bare in front of the "guests". As I was tending to a fairly notorious character, giving out his medications and checking his charts, he rather uncharacteristically patted my arm and said quietly, even knowingly "Everything will be okay son". Our eyes met and for the briefest of moments, I saw in his compassion and hope - commodities that in a place like that, are uncharacteristic gems.

So the Tortoise Collar has been discovered. We hold it reluctantly.