A Parasitic Relationship - A Schwannoma Diary (#3).

I think I'm entering a phase of being angry now. 

I met with my neurosurgeon this afternoon to review the MRI scans that were captured over the weekend. 

They established the geography of the space occupying lesion at the base of my spinal cord. Even on the scans, it is a parasitic looking little shit. In fact, it's not so little. It's something in the order of an inch to an inch and a half in size - a dark, lobulated mass that is being fed by a rudimentary blood supply and, most likely, my cerebrospinal fluid - the fluid that bathes my spinal cord.

My little parasite - not the circle, the thing in the circle.

The theory goes that this tumour is one that has degraded over time. It started out as a healthy (???) schwannoma but some where along the way it degenerated into this cystic lesion. There's still a lot that is unknown about it. An MRI will give you good images and you can make certain assumptions about the make up of the structure and tissues featured in them. But they're assumptions. Guess work. Estimations.

We won't really know the composition of this thing until it's removed from me and it can be examined. 

I want to anthropomorphize it - to give it an evil agency so I can justify being angry and hateful towards it. 

But it's not evil. 

It has no agenda. I mean, it couldn't even grow properly, like a normal tumour would. It's a pathetic reject - a retarded tumour. It's just there. A stupid genetic abberation of my own making.

I can't sustain my anger. I end up feeling empty, perhaps a little bit guilty.

My retarded tumour.

The surgery has been set for next Tuesday, the 18th of December. I will undergo a laminectomy whereby the surgeon will re-enter my spine through the incision that was made 29 years ago. There's a lot of old scar tissue from that original operation that may or may not cause some problems. Scar tissue is not forgiving. I'll be under an anaesthetic for 3 - 4 hours. It could be less if my surgeon can get in there without too much trouble. Then, I'll stay in the hospital for 5 - 7 days.

That's where my stomach drops. Having to tell my children was crushing this evening. Christmas Day won't be the same. I won't even be home for it. We won't be able to observe our little traditions. Worse still, our planned interstate vacation looks unlikely to proceed. This is particularly upsetting. I haven't seen my parents or my brother for 8 months. There are old friends I haven't seen who I was looking forward to seeing. I haven't reconnected with home in all that time and it hurts. Some people don't understand how much it hurts.

I've noticed something about hospital forms - they never allow enough space to write your email address. I always end up squashing up my writing to make it fit. I'll have to bring that up with someone I reckon. 

DFA.

An Emotional Entropy.

I experience periods of self loathing at least ten times a day. 

Sometimes, they occur for no other reason than an autonomous biological chemistry in my mind. Sometimes, they are a product of my own idiocy - or inadequacy - or both.

I don't set out to be an arsehole. I know, deep down, that's not me.

But things in this world scare me. Everything I thought I knew about it is slowly and surely deconstructing. 

It's not enough for me to accept things as they are. I feel as though I have to challenge the orthodoxy, because I fear there is something inherently wrong with it. I fear it is out of control. I feel I need to stand apart from the group think. 

But, when I walk into an unfamiliar room, engage with a stranger, question them... 

It's bound to come undone and I know this - implicitly - before it even happens.

Yet I barrel forward anyway. Because, somewhere in the corridors of my mind - my conscience - I hold something that is well meaning. An important point of view. My attempt to question - mentally - is honorable. 

The execution...?

I am an incompetent driver of this vehicle. And I know, even before it happens, that only one thing *can* happen. 

I will crash and it will be destructive.

The older I get, the less certain I am of everything. I realize know very little. My thinking is limited. I am constantly plagued with doubt. 

I wish I were different. I wish I had the confidence, the nimbleness of mind to be more considerate in my discourse. Respectful.

I am governed by an experience - a series of experiences - I wish I'd never had.

There's a word for that, for this. For me...

Entropy.

Is that it? Who knows. I'm too dumb to know myself.

The Snore Of Destiny Part Quatre.

The glow weave shirt, the nice pants and boots, the teeth brushed thrice. We're going to the surgeon today...

again...

fuck...

***

It's numbing, sitting here in the waiting room, ruminating over the fact that I'm here again. After 18 months, I'm back to square one. I've feel as though I have not advanced a centimeter. I've merely turned a circle. 

I'm reminded of a bee I saw a few days ago whilst out for a bike ride with my daughter. It was turning a circle on the kerbside. I guess it must have slapped into a passing car and, somehow, survived the impact. There it was, turning this futile circle, probably brain damaged, unable to do anything else. I feel a sense of camaraderie with that bee in this moment. 

Futility. Damage. 

I feel I've reached a point where I feel as though things seem irreparable, and no amount of surgical 'tinkering' will get me back to that state where everything just worked. 

I fear sleep because every time I lay down, I wonder if this is going to be the night when I drown in my own fluids? 

I fear speech because of the crass stares I get when my voice begins to fail & it looks as if I'm going to throw up. I see how they look at me. It's a mix of incredulity and disgust. They take a step or two back, fearful of being in the firing line. 

I look at food with ambivalence because I can't taste it, or smell it. I can't smell a flower, or register the scent of Chanel on my wife's skin. There's no olfactory pleasure - just an occasional 'meaty' nothing taste on my tongue that occasionally hints at something rotting. 

I wonder if that's me? Am I rotting?

It's a curious thought, isn't it.

The waiting room is full. It's a nice space, if a little full. There are lots of people around me. 

I wonder if they're warring with their own minds, the way I am right now?

***

Impairment of the right inferior constrictor and laryngeal muscles related to a neuroma...

Recent increase in dysphagia...

A tendency towards micropenetration/aspiration events...

For modified barium swallow with speech pathology...

***

More study. More intelligence gathering. More planning. 

For what?

DFA.

When The End Is Just The Beginning - Journey To Walhalla Entry 1.

It never ceases to feel special to me, whenever I type the words "The End" on a writing project. 

For my latest work in progress, a romantic fiction novel that carries the working title "Walhalla", I reached that milestone yesterday - and I almost couldn't believe it.

I've spent just short of a year working on this one, if you include the time that I spent *not* working on it because of some health challenges, and it was because of those health challenges that this milestone feels all the more sweeter. 

When I lost my voice after I had surgery on my throat and vocal cords, I mistakenly believed that I would actually throw myself into the project during my enforced convalescence at home. In truth, I lost all motivation for writing. My writer's voice had become just as silent as my physical one and there were times when I thought I would abandon "Walhalla" completely. I grew to hate writing and I grew to hate myself because I hated writing. 

What pulled me out of the hole I found myself in?

She... (image credit Lucasfilm Ltd.)

Carrie Fisher's death in December of last year had an impact on me. Apart from the fact that she was my most favorite "bad-ass princess" throughout the now 40 years of Star Wars, Fisher was widely regarded as a brilliant writer and script doctor - able to weave complex narrative tapestries and turn the most parlous of screenplays into something special. And she did all this while waging a none to secret battle with mental illness. In the ensuing obituaries and reflections on her life, I guess I received something akin to a kick in the pants from her. 

Somehow, I clawed my way out of the hole and I recommitted to this story. I realized that I actually loved it. For this is a story that I think will likely be my most personal one.

"Walhalla" is set in a little mountain town in Victoria, Australia - a place I have known and loved my entire life. Steeped in history and the site of one of the biggest gold rushes in 19th century Australia, Walhalla has refused to die - even though it was thought many times that it would. Somehow it has endured and is undergoing something of a renaissance, thanks to a renewed interest in its history and the opportunities afforded to it by tourism. 

For me, Walhalla serves as the setting for what I hope will be an engaging love story between a Doctor who has returned to his home town after the failure of his marriage and a Baker whose tragic past has instilled her with a steely determination to succeed with her nascent business. Walhalla - the story, like the town - is filled with a cast of quirky characters, all of whom are derived from people who have been a fixture in my life and I hope their presence will leap off the page as I develop the story further.

Because, even though I have typed the words "The End" on this first draft - it is really just beginning. 

Editing is a process that I love. It is challenging, frustrating and rewarding all at the same time. Once I have completed my first pass over the manuscript, I'll have a team of people to whom I will pass a second draft onto to get their insights, advice, criticisms and recommendations. I will incorporate all of those into a third draft - and then I'll be at a stage where I hope to submit it to my publisher.

I hope you might like to join me on this journey. I'll keep you updated - not too frequently - about my progress and I'd like to share a little bit of ephemera about the actual town Walhalla and how it has influenced me over all these years. 

DFA.

The Tangential Author.

I go off on tangents.

A lot. 

Having the kind of mind that just won't quit is both a blessing and a curse. This past week, it has been a blessing. 

I think.

I began the week strong, in a writing sense, and I found myself advancing the tendrils of my current work in progress forward. It was really satisfying. I tend to work in a linear fashion but often I'll get bursts of inspiration that will have me going back in the time line of a given story in order to add nuance to earlier scenes or help me to clarify things that I was struggling with in those earlier parts of the story. Or, I'll go off on tangents. 

Big tangents.

So, I arrived at a scene in which my protagonist, Hayden Luschcombe, had identified a problem with a motor vehicle owned by my other protagonist, Isabelle Sampi - simply by hearing the sound of the engine. Let's just say that Hayden has savant qualities. He declares that the problem with Isabelle's van (she's a Baker/small business owner by the way) is a blocked fuel line and he offers to help her fix the problem until she can get it properly appraised by a qualified mechanic. They live in the mountains of Victoria, Australia in a town that is far from a mechanic.

(I'm shipping these two.)

This presented two problems for me. One - I am not a mechanic. I know a little bit about cars that will help me out of a jam but that's about it. Two - what homespun, ridiculous-but-effective method could I come up with to unblock a fuel line of a 2011 Holden Combo commercial van.

Here's where the tangents kick off. I started by researching the basics of modern motor vehicle fuel systems. What they comprise of, how they pass fuel from the tank to the engine, what the ingredient of modern fuels contain and what scenarios contribute to the blocking of a fuel system. I learned quite a bit from this exploration although a lot of it went quite over my head.

Once I had the anatomy and physiology of a modern motor vehicle fuel system worked out, I progressed to coming up with a homemade method for unblocking a fuel line. Now, as I write this, I'm still trying to nut this one out. See, a fuel line is essentially, a metal reinforced rubber hose which is capable of getting clogged up with a number of impurities from motor fuel. And there are any number of solvents out there that are capable of unblocking said hose. But, for the purpose of my story, it has to be home made and it has to sound - on the surface at least - totally ridiculous. At the moment, I have three ingredients that could be employed, either singularly or perhaps in combination - bicarb soda, citric acid and vinegar. 

I probably need to sound out an actual mechanic as well but, given I still have major problems with my voice, I'm reluctant to introduce myself to people I've not met before. 

I'll work it out I'm sure but if you have any suggestions or know a motor mechanic who can offer up a suggestion, please do point them in this direction. 

#

On the subject of my voice - I know it's been a while since I've spoken about it here but things aren't really progressing in that regard. It's painful to attempt vocalization and when I do, I have this over sensitive gag reflex that kicks in. On a full stomach, it is not pretty. I've lost a few meals because of it, so I avoid it as much as possible. 

It's depressing. 

As someone who enjoys conversation, to not be able to engage in it is isolating. I recently attended a family party and it was a stark experience. I found myself sitting quietly in a corner, observing others rather than being in amongst them. I mean, contributing a handful of nods here and there isn't really very engaging. And the totally acceptable noise level at a party make broken speech impossible so...yeah...

It's still a work in progress but I fear, at this point, there isn't much work left that I can do.

Here's a lovely piece of irony for you though. 

I returned to work a while back and it has been good, even though I've been essentially mute.

One of the first patients I nursed on my return was a young woman who had a large, malignant brain tumor removed. In the immediate aftermath of her surgery, she was doing okay but she unexpectedly had a bleed that rendered her unconscious and she was in a coma for a long time. Gradually she recovered her consciousness but she was mute - really only able to communicate with her eyes and broken hand gestures. 

I was allocated to her and it became a great partnership because we both developed a method of communication with each other that transcended speech. She made it possible for me to nurse despite my impediment and that gave me a much appreciated boost in confidence.

She can speak now. She's actually doing very well and we now have a kind of running joke that she got her speech back faster than I did. 

It's heart warming you know. 

I can take *something* from this situation. 

DFA.

Garry Lyon & The "Mental Illness" Defence.

In Australia this week, our mainstream media has been treated (???) to the odious spectacle of a good old fashioned sex scandal. 

The scandal involves two former Australian Rules Footballer's, Billy Brownless of Geelong and Garry Lyon of Melbourne. It has emerged that Lyon was engaged in a long term affair with the ex-wife of Billy Brownless and that it has effectively destroyed the friendship between the two men. Further, in the fall out from the revelations, Garry Lyon has stepped aside from his gig as the host of "The Footy Show" a national weekly television program that talks all things footy citing mental illness. Brownless is also a panellist on that show.

Friendships Destroyed (image credit: News Limited).

Lyon has gone into hiding, leaving his representatives to make various vague statements publicly about his mental health in an effort to diffuse the situation that has already blown up around him. 

I call bullshit.

Garry Lyon no more has a mental illness than I am an aquatic humanoid with gills.

I find it increasingly apparent that people in the public eye - especially those who have been caught out for their particulary tawdry behaviour, quickly throw up mental illness as defence in order to protect their reputation. 

Having cultivated a certain image over a long period of time, ensuring that they only show the side of themselves that they want the public to see, when they transgress and expose their true nature, they do anything they can to explain away their actions. It's called damage control, harm minimization. 

Let's get it on (image credit Uproxx).

Garry Lyon, the former AFL hero, the respected football commentator and all around "top bloke" gets caught in a salacious, sexual tryst with his best mate's ex-wife with all the froth and bubble of a Bold & The Beautiful plot line. It blows up in the mainstream press like a roadside bomb with shrapnel hitting the TV news, internet portals and print newspapers. To mitigate the damage to his oh-so-carefully constructed personal image, his people quickly strategize and throw out the mental illness defence in order to garner sympathy. 

Mental illness is a serious issue, afflicting many thousands of people everyday. We struggle with it - often in silence - although many great strides have been made in growing awareness and reducing the stigma for sufferers.

When public figures default to the mental illness defence in order to explain away their shitty behaviour, it diminishes the gravity of mental illness, makes it a topic of derision for FM shock jocks and glossy magazines who all snigger at it with a wink-wink, nudge-nudge.

Gary Lyon is a shit head who couldn't keep his dick in his pants. He's destroyed two marriages and a friendship in the process and by engaging in this selfish act of damage control, deferring to the "mental illness" defence, he damages the credibility of a silent scourge that afflicts so many. 

Garry Lyon should just front up and tell the truth - that he's an inconsiderate prick.

DFA.

Robin.

I was chatting to a dear friend of mine this morning and we were lamenting that Robin Williams was perhaps one of the most influential actors - nay people - of our generation. 

Sure, there have been celebs who have come and gone, but Robin Williams was something else. He was a pop culture icon before we even knew what they were. 

I watched "Mork & Mindy" on the black and white TV when Channel 8 was the only channel we could get in our house. 

The movie "Popeye" was one of the first films I ever saw on VHS. 

A comedy album he recorded in the early to mid 80's was one of the first "rude" records I ever heard - the kind you listen to in your bedroom with the volume turned way down because you're afraid your Mum might hear it.

"Good Morning Vietnam" was the movie that introduced me to the music my parents grew up with. It was also the film that really brought home to me the futility of war. 

"Dead Poets Society" was the movie that inspired me to read more, to treasure words and to never accept mediocrity. 

Boys, you must strive to find your own voice. Because the longer you wait to begin, the less likely you are to find it at all. Thoreau said, "Most men lead lives of quiet desperation." Don't be resigned to that. Break out! break out now is the time!

Robin was there when I was a kid. Robin was there when I was a teen. Robin was there when I was a young man, tortured by my own darkness. 

He is no longer here. 

I weep for him.

DFA.

Unravel - Conversations with Greg Ralls.

There have been a few standout individuals I have encountered throughout my life who have made a particular impression upon me. They have excelled in their various endeavours, be it academic, sporting, arts or humanities, and have done so with a quiet determination, an unfailing drive and discipline, setting a bench mark which I've watched with a mixture of admiration and envy. 

Greg Ralls is one of those people who I have known, admired and envied for much of my life and he is a man who I feel privileged to know.

Greg and I grew up in the same country town together, went to the same primary school and high school, we were Scouts in the same group together. We were friends, but I wouldn't say we were close friends. I had a tendency to regard Greg with awe. In high school, he was academically brilliant, achieving top marks across his subjects. I regarded Greg as musically brilliant as well. He joined the school band from the beginning of high school, first playing the French horn in the orchestra before taking a sideways step to guitar. It was with the guitar that he excelled and I remember Greg becoming somewhat of a high school rock god because he was so damned good. 

He grew his hair long, emulated his rock heroes Brian May, Eddie Van Halen and Angus Young and was basically all kinds a of kick arse. During his band phase - first with a rock outfit called High Voltage, then with a later incarnation "Leather 'N' Lace" - I'll confess I was a groupie. All the while, Greg continued to rewrite the book on how to maintain an academic integrity that was second to none. Greg graduated from high school with a perfect record that would take him beyond the country confines of Gippsland and onto  greater things - further university study that would eventually dove tail into a lucrative career in civil engineering.  

As you do, you lose contact with old friends, high school friends as you move on and pursue life, career and love (or not). Greg's dad "Skip" remained (and remains) a regular at my father's barber shop in Moe, Victoria; their conversations routinely revolved around what we kids were up to and I would get snippets of those conversations from Dad during phone calls. 

With the advent of social networking of course, the opportunities for reconnecting with old friends becomes a simple as a key stroke, so when Greg popped up  in my feed a few years ago I didn't hesitate in reaching out. 

Greg revealed to me in some of those early conversations that he wanted to write a book and he sounded me out about a few practical things surrounding the production of a book, knowing that I had been published myself. I was keen to see how Greg's project would evolve and I was pleased to see that, this year, the fruits of his labours have now been realized. 

I was pleased and also a little shocked...Read on...

Unravel, by Greg Ralls chronicles a period in his late 20's, when he experienced first episode psychosis. After reporting a suspected homicide to police, Greg was straightjacketed and made an involuntary patient in a locked ward of a Western Australian psychiatric hospital. 

This is the story of an ordinary Australian; a boy from rural Victoria who excelled academically, who as a young man earned double degrees with honours from the University of Melbourne before moving across the continent to Western Australia to work for a successful consulting engineering firm. Four years after moving, his world fell apart; he was unwell, lost his job and was admitted to hospital. 

Unravel invites readers to share Greg's journey, from childhood to his adult years when his life unravelled, and to recovery. He relates his experience with clarity and honesty, and his intelligence and positive attitude shine throughout. 

Unravel is a thoroughly absorbing and courageous account of a man who, through his own hard work, determination and diligence, has the world at his feet and then loses it all as a result of a crippling mental illness.

Simple in its prose and unflinching in its delivery, Greg Ralls explores himself - his construction, de-construction and re-construction - with clarity and honesty, providing a vivid insight into schizophrenia and the incredible challenges he faced recovering from it. His journey through this dark time is peppered with all of the characteristics that made me admire Greg so when we were young and the resultant document serves only to reinforce that admiration. 

In talking with Greg about the book, I started by asking him to elaborate on his motivations for writing such a profoundly personal work.

G.R.: 'Unravel' was written primarily for my son. He's an only child, and I was driven by wanting to provide something of me for him for the inevitable day when I'm no longer here. That said, I'm only forty, so my death will be a while off yet I hope! 

Another motivation was a sense of disenchantment following some of the experiences I've had, and a feeling that writing would show to the world that those experiences hadn't got the better of me. Finally, when I began writing I still hadn't come to grips with my diagnosis. Putting into words all that happened gave me a greater level of understanding in regard to schizophrenia. 

I did a lot of background reading on the topic of mental illness, of various authors and from both psychiatry and anti-psychiatry viewpoints, which allowed me to gain a better perspective on my experience. So the motivation in that sense was to know what had happened to me, to unravel in my own mind parts of my life that felt incomplete. I recall waking up at about 3am one morning and having a compelling need to write. I got out of bed and started doing it.

DFA: In bringing Unravel to the page, what challenges (if any) did you encounter? I was particularly drawn to the deeply personal aspects of your recollections of your acute psychosis. Was recalling details of those and your hospitalization difficult for you?

I only wrote when I felt like it, over a three-and-a-half year period, and was never certain about publishing - but I had a feeling I wanted to. Surprisingly, it was an easy process; however, there were times when I read back through parts of my manuscript that I felt I entered a weird head space of vivid recollection of periods when I was unwell. It was like briefly revisiting the sensation of being unwell. 

Strangely, I thought that readers might see me as somebody who is still unwell instead of recovered because of the way I felt in those moments, as I was observing my own writing. I was projecting my feelings, in my imagination, onto those who in the future would read the book.

DFA: Now that 'Unravel' has released, what are your hopes for the book and what are your plans for supporting the book and raising its profile?

G.R.: The feedback I received following the first limited print run was overwhelmingly positive. People have opened up to me with their own stories as a result of me telling mine. Somebody suggested donating money to charity, so I'm planning now to raise money for community mental health support through continued book sales. I guess my biggest hopes are therefore to be read and appreciated, to bring forth a lot of fruitful dialogue on mental health, and to raise money to help others. As with everything in life, the real underlying desire is to achieve a successful exchange of value.

Greg Ralls has achieved something special in the writing and publication of 'Unravel'. He has contributed an important voice into the conversation surrounding mental illness, unravelling much of the stigma through the sharing of his own journey. His goals of raising the profile of mental illness through the sales and awareness of his own journey are considerable. And in sharing his experiences, Greg has affirmed that qualities I always saw and admired in him and he has raised the bar of human achievement just a little higher. He is courageous and evolved. But most importantly...

He is human.

Connect with Greg Ralls here.

Enquire about "Unravel" at the official Facebook page here.

DFA.