I am still me

It was Boxing day. I was just getting out of the shower when I felt a little twinge in my right leg and went to lay down. Three hours later I was face down on the floor paralysed and without pants, trying to make myself understood over my iPhone. Struggling for my life, I was having a stroke.

My earliest memories are from growing up in Tasmania, some from possibly as far back as 2 years old but it is hard to date them because there is nothing in the memories to place them into a time-line. The first memory that can be positively dated is of my baby sister Rachel from when I was 3 years old, because she died when I was 3 and a half. I remember that day too. My father and I are the only two people left who have any memories of her. If she had lived she would have been 50 now.

When a person gets rushed to intensive care on the day after Christmas day, you‘d expect food poisoning to be the problem. Or perhaps an injury from some shoddy Yuletide gift. In my case it was a haemorrhaging brain. My mind and body both failed after a blood vessel in my head ruptured, leaking blood into my mind-equipment. My girlfriend came home to find me paralysed and incoherent, and I was whisked into an ambulance and off to hospital. I spent the next week in the ICU. My brain had been inflated like a carnival balloon and I was little more than a vegetable. So the fight for my life was left to the experts. They brought my blood pressure down, and stopped my noggin from popping like a failed soufflé

I am the first member of my family (on either side) to be born outside of Australia for 4 generations, which is very rare down there, where most people have shown up rather recently. I alone was born in Scotland while my dad was completing his studies there. Once he was done, my parents moved back to Australia where the rest of my siblings were born.

For the next week I sometimes spoke sense and, I learned later, sometimes spoke utter gibberish, to a small circle of friends and loved ones, as my blood pressure numbers soared and fell and soared again. For a full week I had pipes up my nose and electrodes attached to my body while a constant stream of people rushed in to prod, poke, and inject me. They’d take readings and debate them at length as if I were not there. Mentally at least, I wasn’t. God knows what drugs I was on, I was sleep deprived, and of course there was the little matter of a swollen brain.. All of this made for a very hallucinogenic state of mind, and my memory of that time is of being in a fog which would sometimes clear, and lo and behold, some loved one was sitting at my side. We’d chat briefly before the fog would sweep in again and take me away. Meanwhile, the people who cared about me the most wondered whether the gibbering idiot in the hospital bed would ever annoy them in his own special way again..

As far as I know, even though my family has been in Australia for quite some time, there is no convict in my ancestry. This has supposedly been verified on my father’s side; a point of pride for my dad but actually a great disappointment to me… I haven’t given up hope that a long hidden cut-purse or pick-pocket will someday fall out of my mother’s side of the family tree if I shake it hard enough.

In the first few weeks after my stroke, it seemed that I was suffering from multiple personality disorder. Sometimes I accurately remembered the sequence of events that led me to hospital, and at other times I supposedly claimed myself the victim of a violent assault. Or at other times, a car accident. This is strange to me now, because I have a very vivid memory of being physically paralysed by degrees. Which ended in a life or death crawl across the carpet to call for help. By the time I’d found my phone, my mind couldn’t remember how to operate it. It’s strange to perceive the failure of a human mind, from within that broken mind itself. I remember that I was not sure what was happening to me, but knew it was definitely something serious, and I certainly didn’t think I’d been hit by a car in my own bedroom. I have little or no memory of telling these wild stories, but I often wonder what was going on inside my mind in those early weeks in the ICU.

Of course, it’s impossible to get any sleep in the intensive care unit. Unlike a regular hospital room, where they sometimes turn down the lights and let you sleep, the ICU is like being on the bridge of a submarine at battle stations; that part of the hospital where you are being monitored very closely, 24/7, and there’s consequentially no such thing as sleep.

My role as the eldest child was to flush out all my parents’ bad genes to spare my siblings from asthma, excema, allergies, high blood pressure and who knows what else… I’ll probably be bald in a year or two whereas all my 4 brothers have hair thicker than coonskin caps. Despite all that, I have very good eyesight and excellent teeth. I have a wine coloured birthmark on my back that I didn’t even know about for years, because it is in my blind spot and nobody had told me about it. I got quite a fright when I saw it in a mirror for the first time, as a self-conscious teenager.

Slowly, as I came out of the fog that I’d been in, I was reconnected with my own timeline. There is still a missing week or so, where all I have is brief, hazy images like from a dream. Sadly, the reality I woke up to was nightmarish. My entire right side was paralysed, including my drawing arm. This was a lot to process; would I ever be whole again? Would I walk? Would I be able to draw?

As a small child, I used to believe that we all went to some “real” place when we dreamed. According to my childhood cosmology, if you saw someone in a dream it was because both of your minds had actually met each-other in some fantastic dream-place, a sort of sleepy-time heaven. I now realise that this is utter bollocks but I still like the idea anyway. Sadly, I rarely remember dreams any more. Maybe only twice a year. I’ve always had trouble getting to sleep, and once I have gotten there, also have great difficulty in waking up. Despite (or perhaps because of) those two facts, sleeping is one of my favourite things to do.

In my whole adult life till this stroke I had one or two near miss, embarrassing bathroom stories. Typically, they involved travel to far off places, exotic foods, and faulty plumbing, and made for hilarious, white knuckle anecdotes to tell. But they were close calls. Narrow squeaks. Rarities. Being a partially paralyzed patient in a major metropolitan hospital gave me more mortifying toilet stories than an entire lifetime.

So many tales of horror, that embarrassing became commonplace. Ghastly was standard. I’d have to go back as far as my memories of early potty training to find any memories as fraught with toilet anxiety. My ego underwent a kind of breakdown and I pushed out to the other side. I mean, how seriously could I take myself when I was not physically able to even wipe my own arse?

The only thing that made it partially bearable was that the hospital staff were so blasé about it all. I got my showers much like a hippo might be hosed down at the zoo, with the nursing staff leaning on their mops with about the same attitude whether they are soaping my back or sudsing my undercarriage. Sigh….

I am agnostic about everything I can think of. When other people emphatically state anything with absolute certainty it mystifies and even annoys me… However, I must confess that I am a bit jealous of the self-righteousness that must be the dividend of their dogma investment.

I worried that I’d never be able to draw as I once did. It was a terrifying thought. In fact it still is. I have been a working artist since 1982 and drawn since as long as I can remember. The idea that I may not be able to do so again fills me with horror. So I focus instead on getting better. I am not ready to deal with the alternative.

As my condition stabilized, I moved into the acute rehab unit at about the same time that a more sane understanding of my situation came to me, as the swelling of my brain started to subside.

Perhaps related to a lifetime of sleep deprivation, I have a really bad case of Yoda-eyes. (Speaking of him; Star Wars changed my life. The Phantom Menace changed it back again).

Still beset with strange vision distortions, and with my right side completely paralysed, I was seized upon with great zeal by an enthusiastic army of physical therapists. Every muscular twitch and tremor was cause for celebration and strange calisthenics. I was a mere plaything in the hands of my rehab team, who kneaded my palsied body this way and that.

With the flawed judgement of a severely traumatized and bruised brain, I hoped I’d be back to normal by the end of the year. I laugh now to remember how naïvely optimistic I initially was about my recovery from this devastation. The modest progress made after 4 years of hard struggle, I had expected to achieve in six months. Now I realize that my physical rehabilitation will be a process of decades.

According to MRI and CAT scans, my stroke happened deep in the brain. Almost at the brain-stem itself. A region called the thalamus, which is often described as being a ’relay station’ or ’switching center’. It has a secondary role related to movement and that is why my physical recovery will be very slow.

It is one thing to be paralyzed but it is another to lose the sense of touch and the sense of body awareness. Of ’proprioception’. When I close my eyes I cannot accurately say which way my limbs are oriented. This means that my balance and movement have been inhibited quite a bit. My stroke is quite ’dense’ as my physical therapists would say.

I am not sure who is the more cruel; Father Time or Mother Nature.

As my cognitive abilities and short term memory slowly came back to me over the next few weeks after my stroke, I was to discover that fate was not done toying with me yet. When I was ready to grasp the realities, I was told the terrible truth that the insurance card in my wallet wasn’t yet valid when I was under intensive care.

Believe me, having a hemorrhaging brain in the ICU is precisely the time when you need a valid insurance card. However, in my case that one week stay was not covered, and would therefore be my responsibility to pay. I was over $220,000 in debt, due to a clerical snafu. Half paralysed and consequently physically unable to do my job, I therefore had no ability to work and raise the money to pay back my debts.

Water terrified me as a child, probably due to an episode when I was kick-boarding in the sea at around the age of 5, and my kick-board was snatched by a wave. I went from misplaced confidence to abject terror within two gulpings of sea water. Thankfully, my dad spotted me going under, and was able dive in and rescue me. Consequently, I didn’t learn to swim until I was about 17.

Sometimes it is tempting to give in to self pity, frustration or depression. Or to be overwhelmed by the magnitude of the task before me. But I must remind myself that such feelings would be a waste of time and make a difficult situation even harder to bear, both for me and the people close to me.

I have a lot of rehabilitation to do before I am even close to getting back to normal. I hope that I manage to push through it all with a portion of the wisdom, courage and good grace that my dear mother once showed me. As she dealt with the cancer that ultimately took her life at the young age of only 39 years old.

When living in Japan, I was up on the heads of the most crowded beach I’d ever seen, poised to take a photo of the sea of humanity on the sand, when I saw just below me, a group of little kids out in the deep water with kick-boards. No sooner was I reminded of the day that I lost my own kick-board many years before, than one of the kids was caught in the backwash of a wave coming off the rocks, lost her kick-board and went under the water, just as I had done as a child. So, without pausing to take off my shoes and clothes, I jumped in and grabbed her. It was impossible to clamber back up the vertical rocks, so I swam for the shore, which was hard going due to the extra weight of my sodden clothes, but I got her to safety. This is one of my proudest achievements, certainly the one where my presence on planet Earth made the most difference to someone else.

It is remarkable when something comes along that changes your perspective on life in an instant. It doesn’t happen often. Maybe when you finally find that special someone, or perhaps the birth of your own child. Those things make you feel the wonder and magic of it all. But what about the death of a loved one? Or a serious illness? Those things make you feel how flimsy and arbitrary it all is. How quickly it all changes.

The trick in this life is being able to feel the joy of existence even when things go wrong. Which requires that you find beauty in little things. This is not always easy. I hope that when I get back to being close to 100% of my former self (if I ever do) that I will be grateful. Because that existence, though I did not think about it at the time, seems idyllic to me now.

In fact, what I have in my mind’s eye as a motivational goal, is to get back to the most boring day imaginable from my previous life. To be able to walk on sand. To lie in a hot bath. A lazy meandering walk to nowhere in particular. Maybe alone and without supervision. From my perspective now, that sounds lovely. In fact, even the shittiest day from my previous life seems so wonderful to me now.

I can tolerate more than the average amount of filth and chaos in my apartment or work space, but I like the emotional spaces I inhabit to be minimalist; tidy and free of clutter. I have a hard time dealing mixed feelings or divided loyalties… which is something I need to work on. I am only just realising that life is about achieving a balance between opposites rather than purging one for choosing the other. Anyone who says that I have a fear of emotional commitment clearly has not seen me hold a grudge; till death do us part.

In movies or on TV, there is often a quick montage to show someone recovering from illness or injury. It spans a minute of screen-time, and then they are back at living life with the same vigour that they had before. A real life medical recovery can represent years. I’m living right now in that 60 second healing montage that actually takes years of my life.

In my montage — doing my therapy exercises, dealing with insurance issues, and clumsily drawing with my left hand — it’s difficult to know the context. Is it like a JACKIE CHAN Kung Fu workout-montage, before he triumphantly rebounds and opens some whupass on his foes?

Or a transition-montage? Like at the beginning of a movie like THE WRESTLER, where MICKEY ROURKE ends up a broken-down old has-been, and stays there?

Is this the end of ACT 1 of my story? Where I suffer a life-changing setback and then rally? Or is it the end of my 2ND ACT; my ‘low point’ where I am learning one of life’s lessons? (maybe the stroke was actually about my own hubris, and so forth.) Or, is it the end of my 3RD ACT; where I have learned to adapt to these changed circumstances?

It is probably true what they say; that true-love never dies, but what they don’t tell you is that the permanence is actually the worst thing about it.

When life gets hard or inexplicable “Everything happens for a reason” is a phrase that often gets bandied about, to help make sense of it all. But I’m not so sure that real life works quite like that. Of course, I’m never sure of anything, but I often suspect the exact opposite. That many important, wonderful, and even catastrophic or terrible things happen for no reason whatsoever.

Even if there is some cosmic reason for this situation. Or some nut of wisdom to grow out of it, allowing me to look back on it all as a ‘blessing in disguise’ (I’m the first to admit the appeal of that idea) I am in still the middle of this story. Therefore, I don’t have enough perspective to decode it all yet. So I must battle away slowly, one day at a time, and focus myself on pushing as hard as I can to get where I’d like to be, without lapsing into bitterness if things do not go as I would like. I’ve always found that maintaining this balance to be the trick to living a happy life, so in a very real way, nothing at all has changed.

Drawing was an escape for me when as a kid. My fondness for both it and animation (which I’ve had as long as I can remember) did not diminish even after working in the industry since the age of 17.

When my trusty drawing hand died, I became full of anxiety about drawing, and deeply afraid. Each time I picked up a pencil, whether it was with my right hand or my left, the best I could draw was clumsy squiggles. I’d persevere for for a moment or two and then get very depressed. The hand that knew how to draw since childhood was now paralyzed and the hand that was not paralyzed was clumsy and useless. I can honestly never remember a time when I did not draw, right up until 2013. Drawing had not only become my living but also a means of escape, of expression, and of identifying myself, but now, a part of me that I valued, that I’d healed myself with, and had traditionally turned to when feeling low, was absolutely dead to me when I needed it most. I was afraid of the emotional spiral I might get into if I dwelt too much on it.. One thing I have learned is that the frightened human mind is quite capable of eating itself alive if you let it. So you must not let it. I was already a physical mess and a financial ruin, without being an insufferable self-pitying sad-sack as well. So I did whatever I could to keep my mind occupied, and if there is any advantage to being in such poor physical condition as me, it is having so much physical therapy that there’s a full slate of activity to distract my mind with. I searched about for some other way of expressing myself, and discovered the catharsis of writing. I picked-up my old project of writing down childhood recollections to keep my mind busy, and began posting stories on my blog.

Most men have experienced a time in their childhood when they felt bullet proof. I never had this feeling myself. Although I feel childish now as an adult, back when I actually was a child, I felt like an old man.

Then something happened with my feeble drawing, and it was more an attitude shift than any advances in my skill. The drawings were still unbelievably crude compared to what I used to do, but it didn’t bother me. The breakthrough came in a chuckle. A crude little squiggle amused me, and at that moment the joy of drawing was ignited, much as it must have been on that first now-forgotten day when I first drew something that made me LAUGH, as a wee child. Now, unattached to any expectation of visual polish, I relish the surprise and exploration of drawing, and I’ve pushed through to the point where I enjoy it again. It’s as if I’ve gone back to the time when I was 8 to 10 years old. At that age, I was very much into drawing, I loved it and was getting better at it, but it was anybody’s guess if any particular drawing would turn out terribly or turn out great. Sometimes I would do an absolutely brilliant drawing and surprise myself. The very next time that I tried, the drawing would be utter garbage, but the point is that I would sit down with a great sense of anticipation and wonder every time I did a drawing. There was mystery and excitement, and I think I’ve tapped back into that feeling at the moment. Until recently I was fighting through the feeling that an important part of me had died when I could no longer draw, but it is coming back, and in a way that I had forgotten; the JOY comes first and the POLISH comes second.

I have never understood poetry. I know that is a deficiency in me. I like the use of the word, as in “ that movie was poetic” but, although I enjoy lyrical, poetic qualities in many other things, I cannot connect with the real thing at all. Poetry always seems like a song that is missing the music, to me.

One of the strange parts of having a stroke is how alien your own body becomes. My arm, my leg, do not seem part of me now. They do not do what I want them to do, and even in the rare situations when they cooperate there is still a sense of strangeness simply because I cannot feel them. When I manage to make my right arm arm raise itself, it mostly has the jerky aspect of a theme park animatronic, or one of those videos you see of a creepy robot built by a Japanese university. And if a sense of alienation from your body is strange then consider not being able to make sense of what has come out of your own mouth. Thankfully this is not something that I wrestle with now, but my memories of a time when it was common are still very unsettling just the same.

There is so much focus on winning in our culture; stories about winners and how to be one… but it is the stories about losing and losers themselves that I am drawn to. I think that it’s funny when we call other people ‘loser’ as an insult. By definition, there is only one winner in any event, which makes all the rest of us losers. I learned to identify with being a loser years ago and I have a lot more peace of mind now because of it.

In the first weeks after my stroke, I attempted to keep the story of what had befallen me as private as possible. I was dealing with major cognitive problems, and still wrestling with what had happened to me, but looking back on it, this heightened secrecy was largely about me coming to terms with what had happened. Thanks to email and social media, it was just a question of time till my crisis became known by everyone that I knew, but before then I just needed to come to terms with my changed situation in my own time. It is funny now to remember that I had once thought that I might be back at work in 6 months. In my defense, I had a swollen brain back then and could not grasp that it would be the rest of my life instead. A stroke is a devastating thing; I feel like a nuclear bomb has gone off in my body and I am living in the rubble.

I truly would not wish my situation on my worst enemy. To be crippled and utterly helpless fills me with a frustration that could touch on despair if I let it, and the financial predicament has been craptacular to say the least. But at times I can see something wonderful as well. The outpouring of generosity and kindness from my friends and family rallying to my side has been a revelation, and under normal circumstances I would not see that. It’s a frightful situation I find myself in and that is no exaggeration, but it has been both touching and bracing to see the unmistakable expressions of love from those who care about me. It’s as if I witnessed my own memorial service without having to actually become a ghost to see the love of my community. I feel like Jimmy Stewart in IT’S A WONDERFUL LIFE, seeing the love of his entire town after his moment of utter despair.

I once lived out of a backpack for about 5 years straight. During a backpacking trip through South America, myself and my childhood pal Peter narrowly avoided jail time when we discovered that some rat-bags had been smuggling drugs under our seats. After our intercity bus had passed a security checkpoint in Peru, searched from end to end by fierce-looking guards bristling with weaponry, the two shady characters sitting behind us pulled about 8 bags of coke (or heroin or god knows what) out from slits under OUR seat cushions, flashing the two gringo-patsies some shit-eating grins as they left. By the time we figured out what had actually gone down, they were off the bus… It was a sobering moment when we realised what would have happened had the guards found the stuff…

It is no exaggeration to say that this meat-suit I am wearing now does not feel like my body; it does not feel like me. That is an alienating situation to say the least. So, while muscular weakness is still an issue, this lack of spatial awareness and feeling is perhaps the bigger problem. Because the neural pathways to my RIGHT side were cut in my brain, the only makeshift mind-body connection I have is to watch that right-side body part, even peripherally. This works, but is a poor substitute for the real thing, because if I look away, that body part drops off my mental radar completely, and I have no idea at all of what it is doing. Am I still holding the book in my right hand? Is my right leg still walking? It is hard to overstate how weird this feels; with my eyes shut I have no awareness of the right side of my body.

I am not at all acquisitive; by the time I buy the “latest thing” it is already old news. I don’t own much and the stuff do I own I’ll keep for years. While working in LA a few years ago, a friend referred to me as an “LA quadriplegic” because I didn’t drive or have a celphone.

I’ve always been a late bloomer. When everyone else could ride a bike in kindergarten I didn’t learn till I was 10. I didn’t learn to swim till I was 17 and while many people started shagging in their teens, my own furtive fornicating fumblings didn’t begin until my twenties, and I never drove a car. When I noticed this late-starting pattern many years ago I consoled myself that my old age too would happen later in life, but wouldn’t you know it, the one area in which I’m ahead of the curve is decrepitude.

Being ironic was once the way to go; I looked up to people who always ‘took the piss’ and could see through hypocrisy, the manipulations of ‘the man’, the media and whatnot. That approach still has its place… but after I realised that detachment is my natural state anyway, and that I need something in opposition to my over-active Bullshit-Detector to achieve some balance in life, I am now grateful for those rare books, artworks, music, experiences and people that burn away the fog of sarcasm once in a while, and allow me to truly feel something.

When I was 48, I turned 96 years old when a vein in my brain ruptured, wreaking damage on my brain & body that I deal with to this day. I became a doddering and feeble geezer overnight, but exercise and physical therapy have improved my age discrepancy slightly, from 48/96 to 52/80, and I’m hoping that my real age and virtual age will again align sometime, possibly around 60/60. In the big scheme of things, I was actually lucky — the brain-bleed wreaked havoc with my motor skills and balance, but missed my most valuable mental real estate. Still intact are my memories of loved ones’ faces, my thoughts and feelings on any issue, my memories of childhood. Though a bomb went off in my head, the damage spared the hundreds of places that give me my sense of self.

I am still me.

Originally published on my FALLOUT blog.