MEMOIR: SHIPWRECKED (FINAL)

MEMOIR: SHIPWRECKED (FINAL)

The boy was a ship cast upon lightless rocks and split asunder. He had just been given his diagnosis. The words “psychosis”, “bipolar” and “disorder” were now carved into his face, as if branded. He was only sixteen, but his old life was over. He was ruined. What girl would have him? What employer? He was used to being a pariah at school, but he had always hoped that it might be a school-only thing, that once he was free from school, he could get on with his life. But what if instead a new kind of curse had fallen on him? He knew that, at least as of that year, 1979, people did not talk about their mental illness diagnoses. Such things were steeped in unspeakable shame. People so afflicted were “malingerers”, “it was all in their heads”, and they just needed to “snap out of it”. It was an impossible time. There was no air. You couldn’t breathe.

Each step he took along that passageway from that room led him into—what, exactly? What possible future might unspool from this moment? He could not imagine anything, or at least nothing decent. Nothing good.

Would I, with my fancy Time Machine, be able to help this kid? I am inclined to think not. This kid is facing an unimaginable future. Unimaginable in the sense that he doesn’t believe even in the theoretical possibility of a future. He thinks tomorrow will be like today. That next year, that ten years from now, will be like today. His life will still be over. His life will be like when the TV signal stops at midnight and goes to the Test Pattern, and then to static. He imagines his entire future to be that static. There is nothing for a Time Traveller coming from his own unimaginable future to do here.

The kid’s only task is to keep putting his feet down, one in front of the other, day after day, trying the things his doctors suggest, the other people on his team suggest, and with a bit of luck and a lot of effort, something might just work. The static might clear. The picture might stabilise.

I remember that it took at least seven long years, what I think of as “the Years of Hell”, to go from that day, shuffling out of the room after receiving my diagnosis, to the day I met Michelle.

I had been through a Vesuvian eruption of the mind. It would take a long time to recover from something like that, for the land to recover, for grass and animals to come back, for healing to take place. For the land itself to be convinced that there would be no more shattering eruptions.

But that boy, on that shattering day as his blasted, post-diagnosis remains shuffled out of the room, did have one good, burning idea in his head. It actually came from the doctor, who, when she told him his diagnosis, also told him, “Now don’t go trying to look this up, will you?” The boy should trust that his medical team (three doctors, a squad of nurses, occupational therapists, two art therapists) knew what they were doing.

Well, he was thinking that afternoon as he made his way upstairs, screw that!

The first thing he did was to visit the hospital’s medical library. It was one of Perth’s major teaching hospitals. Medical students were thick on the ground. And the medical library did have a sign on the door: MEDICAL STUDENTS AND DOCTORS ONLY.

Again, screw that!

Over a few days I was able to acquire the right sort of clothes. I was obviously very young, and my teenage bum-fluff did not exactly sell the image of a hard-working 20-something med student, but equipped with a clipboard in one hand and a determined manner about me, I damned well went in there, and I started looking for medical dictionaries.

Which I soon found. It was very quiet in the library. You know how regular public libraries can be quiet? Medical libraries are quieter still. Or at least it seems that way when you’re scared of being rumbled and thrown out at any moment. Not only were the hairs on the back of my neck standing up, they were standing on the tips of their toes. My shirt was soaked with tension sweat. I could hardly breathe.

And these books were ENORMOUS! I had never seen such immense volumes!

I staggered, carrying one to a table.

But once I had the book, and my notepaper with the full name of my condition jotted down, I could set about looking up what it all meant, at least in a dictionary-definition level of detail. This was no substitute for proper textbooks, but there was no point in venturing near those without some basic awareness of the language.

So. What did we have here? On my piece of notepaper, I’d jotted down what the doctor had told me, which was a long-winded way of saying bipolar disorder, known in those days as “manic depression”. But the doctor, in telling me my diagnosis, had also used the phrase “psychotic disorder”, and it was this that had hit me like a sniper’s rifle round. Psychotic disorder? Psychotic? I was psychotic?

Careful looking up of terms left me with the following: Bipolar meant mood swings. Good-o. Psychosis meant silly buggers with how you perceive the world without your being aware of the silly buggers going on. You think it’s all normal, and react accordingly. Okay, that made sense. There were references to things like paranoid delusions (check), too, that made sense to me. You end up believing all manner of nonsense because your capacity for seeing that things are nonsensical is offline. So you believe, for example, that your dad can read your thoughts. You believe the hospital is spying on you when you’re in the toilet.

But the main thing I got from this expedition was a sense of relief. Nowhere in the discussion of the word “psychosis” was there any direct or necessary connection with murderous violence. You could be psychotic, but you wouldn’t want to kill people because of it. Though you might want to if they were evil tossers, but that’s another matter. Up to this point I had only ever associated the word “psychotic” with murderers and terrorists (it was the Seventies), evil, crazy bastards, villains, all of them sweaty and with lists of demands, and sometimes bombs. The novelist Arthur Hailey had a popular novel, AIRPORT, which featured, in fact, “a psychotic with a bomb”! In my mind, it was me and that guy, two psychotics together.

I can’t imagine why that doctor told me not to try and find this information. It helped me enormously. It gave me a sense of direction, a compass heading, a lighthouse in stormy seas. The next several years, as I struggled to get used to medication, to get used to the world, to finish high school, to deal with girls, unemployment in a job market not interested in people like me–it was all impossible. And I was often impossible as well. My parents and I went through hell. It was the hardest time of my life, and I didn’t know if I would get through it. There were a few people I’d known in hospital who did not survive their own Years of Hell.

In the middle of all this it suddenly seemed like a brilliant idea to go to university, but again, I wasn’t nearly ready, the cake not nearly “done” yet, but I wasn’t to know.

It was only when I met and settled down with Michelle that things started, at last, to take their proper, coherent shape. I had spent years in a kayak, in deadly white-water rapids, and many times had capsized and I thought I was going to drown. But at last I was emerging into calm, clear water, the sun was out, and I could breathe again.

It is good to have survived, and doubly so because of the knowledge, inside me, that despite my own happy-so-far story, there was never a guarantee that I would survive it. Plenty of young men experience what happened to me and don’t survive. Young women, too. They are lost in the brutal rapids of real life.

After my visit to the medical library I felt much better about things. I still felt branded, and still felt that I would always be alone, and that I would never have more than odd jobs, and struggle like my dad to hold them down. I grieved for the versions of me in alternate timelines who did not have the illness, who had never been cast upon the lightless rocks, and who I imagined would have relatively straightforward lives. I thought of those other Adrians often.

But in this timeline, it wasn’t all bad. One thing surprised me more than anything. In that hospital psychiatric unit, where I was an inpatient for four months, I found community and acceptance. Friendship and fellowship. I found girls who were only too happy to be with me, to talk to me, who never saw all the many ghastly things the girls at my high school seemed to see. These were the first girls I ever simply got on with. They were anorexics, self-harmers, with thick white masses of scar-tissue up their arms, and drug-addicts and sex-workers. All kinds of people. I often felt, a 16-year-old boy, out of my depth, but I also felt at home, that I was welcome.

That place was a lighthouse for me. It was a home from home, a safe harbour from the storms beyond.

MEMOIR: HOWLING AT THE MOON (UPDATED)

MEMOIR: HOWLING AT THE MOON (UPDATED)

We were in Mandurah one night several years ago, a warm clear night full of stars and the smell of the sea. We were eating at an outdoor restaurant with a view of the famous Mandurah Estuary, enjoying the food, and enjoying each other’s company, as always. It was as perfect a moment as it’s possible to have in this life.

Mandurah is a place I’ve felt close to all my life. It was a big part of my childhood and growing up during my dad’s “messing around with boats” period. It feels to me now like we were always down there, and I was always paddling around in the Estuary, getting terribly sunburned, or walking around town dressed only in my underwear because I was too clueless to know better, while Dad laboured away on some bastard’s expensive boat. When Michelle and I got married, we had our honeymoon in Mandurah, and the place still had at least some of the old seaside salty magic. We’ve gone back there every chance we’ve had ever since, and on this particular night we’d just arrived at the beginning of our stay.

“Excuse me,” a woman was suddenly standing up a few metres away, at another table, looking at me. She looked about my age, brownish hair, possibly hazel eyes.

It developed that she wanted to speak to me. “You’re Adrian Bedford, aren’t you?”

Ah, I thought. She must be someone who’s read one of my books. This sometimes happened, though usually readers know me as K.A. Bedford. “Yes. That’s me. Can I help you?” I smiled a blank sort of smile.

Then she smiled all warmly and said she was (as I’ll call her) Jenny Ross,” she said, and explained that we were at high school together.

This was as astonishing as encountering an actual space alien while eating one’s dinner.

I said hello, and hi, and we both stood there, at our respective tables, and it was getting a bit awkward. Because, as much as she explained, I only very vaguely remembered her. I did not know what to say. I never expected to run into anyone from “that life” ever again. Even to this day, I retain only one friend from high school, who lives in New York; we hang out on Facebook.

We asked after each other, and we both said we were doing okay, that we were doing all right, that life was pretty good, and that it was nice to see each other, and I still had no blessed idea who this nice lady was who had bobbed up out of the sea of time, and whom I never saw again.

But ever since, all these years later, drifting along on the surface of the sea of time, I think about Jenny Ross a lot, gnawing on the mystery of her. Who was she? Why did she remember me so much, and so fondly that she was happy to see me years later–when so many girls in my own recollection of that time regarded me as the worst sort of filth? Not all, by any means, but you don’t need every single individual to make an impression. There were, in those days, some girls who were at least neutral towards me, who would chat. There was even one girl, Valetta, a pretty English girl with strawberry blonde hair, who was so nice she tried to help me learn to ice skate one time during a school excursion to a dilapidated old ice rink, but I kept slipping, self-conscious, clumsy, humiliated, on my cold, wet, arse. The sight of her soft, warm, pale hand was terrifying. How could I tell her how utterly grateful I was for her graciousness towards me? I couldn’t. I felt loathsome. I felt that my loathsomeness was contagious. She reached out to take my hand, to guide me round the rink, and all I could think, looking at her winning smile and pale hand, was that what was wrong with me would rub off on her perfection. This is psychosis. It affects the way you see the world, and the way you see yourself–without your being aware there’s any problem, that what you see is the truth, that you truly are monstrous.

For a couple of years I subscribed to LinkedIn. One day I got a hello from another woman from high school—this time one I did remember, whom I’ll call Sharon.

One time, around Year 10, there was a school dance. There were usually two or three of these each year, and I avoided them. Because who would go with the likes of me? But this one time I thought, Screw it, let’s try it! There was this girl I liked, so I screwed up every last iota of courage I could muster, and managed to mumble out an invitation to her—and she accepted!

This acceptance was possibly more stressful than a rejection would have been!

On the night we did go together, in the same car. I forget whether it was her dad or my dad driving. Sharon looked lovely! I was dressed as well as my mum could possibly make me. I was terrified. I remember we didn’t talk much in the car.

I could not believe what was happening. We were going to a school dance. It was like we were going to the Moon! The entire thing was impossible!

And it was, too.

We arrived at the school, and got out of the car. Already you could hear the dull thump of the music playing in the gym.

We really looked nice. I was so excited.

She dumped me as soon as we got in the door of the gym.

She peeled away from me without a word, without a look back, and was soon lost in the thumping, jumping, swirling crowd.

But, years later, there she was pinging me on Linkedin.

I deleted the request.

I don’t remember how I got home that night. I’d walked the distance often enough in daylight so I probably did that. I wasn’t so self-possessed that I could shake off such a development and dance the night away. I couldn’t dance, for one thing.

I remember seeing couples tucked away in corners “pashing on”, and I burned with teenage adolescent envy. I might as well go outside and howl at the Moon.

It was a long way home that night.

MEMOIR: MEDS (UPDATED)

MEMOIR: MEDS (UPDATED)

Clomipramine is an antidepressant medication, part of the tricyclic family of antidepressants. They are a family the way the Addams Family is a family.

I took Clomipramine for about 30 years. It kind of worked okay. It was the Uncle Fester of the tricyclics. You could imagine it with a lightbulb in its mouth, all lit up, but only sometimes. I was never happy with Clomipramine. It seemed to only work when it felt like it. My doctor thought it was good enough, and was always very loath to adjust it or change it. I was always asking him, please, please, change it, do something.

And then, in 2016, he did. Lesson: it pays to nag.

He put me in hospital. And so we set off on a grand adventure, trading function versus side-effects.

You want to be able to live your life, do your job, look after your family, maybe even enjoy yourself a bit, without finding yourself tangled up in a sticky web of nasty side-effects that make your life worse than the condition the meds are supposed to treat.

Last year, every time the doctors proposed a new medication for me (and there were many, many medications) there was a fact-sheet about it for me to inspect, and amongst all the facts and figures there was always a discussion of common, less-common, and rare side-effects that had cropped up during testing and trials, some of them guaranteed to be terrifying. So right away you’re thinking about trade-offs and compromises. You might get at least some of your life back, but at the cost of some other part of your life. Take your pick. And be aware that any given drug will only tend to work on about fifty percent of patients who receive it anyway.

Such as me and the great hope that was Zyban. Once I was installed in the hospital, the staff started reducing my Clomipramine dose, doing it over several days. This created some emotional turbulence with withdrawal symptoms, which they moderated with tranquilisers. Then it was time to start on the Zyban. The doctors had talked this up. It was new and exciting. It was an Italian supercar of a drug. Its biochemistry was amazing. It did so many clever and subtle things at once, it was like nothing else. I was going to love it. It sounded fantastic. And I was already feeling sufficiently unglued and stressed out, heading for a full depressive crash, that I would have tried anything if I believed it would help.

The night I had my last Clomipramine was a special occasion. I’d been on that stuff since about 1986. About the same time I was getting together with Michelle. I’d left university just the previous year. The Space Shuttle was still flying. I was in my twenties. I saw the last Clomipramine tablet in the little plastic cup, and wished I’d had my iPad with me so I could take a photo of that last tablet. It was lights out for a huge phase of my life. Every night for thirty years I’d swallowed ten of these little bastards, and while they’d done an okay job of moderating the worst of my depressive cycles, they had side-effects I wouldn’t wish on my worst enemies.

I started the Zyban, and within a couple of days felt pretty decent, even fine. I thought, this can’t be the new drug already, can it? Some drugs come on very quickly, I was told. So who knows? I thought, all chuffed.

That weekend I went to a writers’ group meeting at Edith Cowan University in Mount Lawley. Right away, as soon as I arrived, I felt brittle, antsy, irritated, aware of noises, some in particular. Every chair I sat on seemed made of broken glass and spikes. Wherever I sat it wasn’t quiet enough. There were people talking and eating, and wandering about the stacks. I kept having to change desks, trying to find a quiet spot, and I couldn’t believe there was this much noise in a library, especially a university library.

I ended up sitting in the lobby of the library, heaving with tears from the stress of a few people talking and eating and walking around. Michelle came and got me. Two dear friends stayed with me while I waited for her. On the way home I felt hollowed out, raw inside, undone and broken.

Back in hospital after weekend leave, feeling like a failure again, I saw my doctor, and told him about my experience. He concluded that the Zyban, far from kicking in early and being great, was in fact having no clinical effect whatever. I was not in that lucky fifty percent who felt the Italian supercar thrill of the fabulous drug.

But this meant that I had no effective defense against depression. For the first time since my breakdown when I was sixteen, I was alone and naked far out at sea—and going under.

People get concerned about taking medication for psychiatric conditions in a way they don’t get concerned about taking, for example, painkillers for a headache, or cold and flu tablets when they’re under the weather. I think they worry that the psychiatric medication is going to profoundly alter their personality, their sense of who they are. And to some extent, with some medications, that can happen.

I’ve never worried about that. I’ve always seen medication as a corrective to a distortion caused by the illness. As something like using corrective lenses to fix bad eyesight. Taking the right medication, for me, has enabled me to feel more like myself than less like myself. When the stuff works well, and since my time in hospital my new medication has worked extremely well, it feels even like I’ve been upgraded to a higher, better version of myself. I feel like I can think more clearly, more creatively, and certainly more productively, than I ever could before. I tend to think of my former medication regime as like a nasty, dirty, noisy diesel engine, spewing out soot, rattling and banging, compared with the silent, efficient molten salt solar tower I’m using now. It’s as transformative as that—at least for me.

But I remember the bad old days, most of my life, in fact, starting from my first diagnosis right up until I left hospital for the final time in 2016. All that time running under a crap diesel engine. When D20 discharged me in 1981 it was hard. The new existence. Eighteen years old, diagnosed as psychotic, on medication forever. Doomed.

I and every psychiatric patient I knew at the time walked around looking like we’d all just escaped from a car accident. We all looked stunned, shocked, confused, kind of angry and nervous. We were hesitant and shaky, and we all had dry mouths. The blunt instrument medications we were on then were no Italian supercars. They were East German Trabants by comparison, belching out foul exhaust and barely functional. We were, as a group, either really fat and sluggish and prone to shaky-handed, sad-eyed smoking, or nervy, edgy, jittery and thin to the point of emaciation, and also inclined to smoke. We could barely function, let alone embrace the artistic, creative life. It was all some of us could do to make a cup of tea.

Medication has improved greatly. The Italian supercar drugs work a treat for the people who respond to them. The non-medication treatments work well, too, for some patients. I tried the transcranial magnetic stimulation but I couldn’t tolerate it. You have to lie perfectly still, in one position, with your head just so, for an hour, every day for three weeks. There is also the noise it makes. Many patients are fine with it, but I, with my noise anxiety, could not stand it.

It took me a very long time, back during those Years of Hell, to get used to the idea of taking medication every day, and to take so much of it each day. When I was eighteen I was taking about ten or twelve different pills each night. They all did something important. But it was hard to remember to keep taking them. With other things, like a course of antibiotics, you’re lucky if you can remember to take all of those, and that’s only two weeks, but this was every night forever. It did my head in, that forever. That I would never be well, not properly. I would always, as I came to see it, walk with a limp that only I noticed, but which I always noticed.

What helped in the end was coming to see the illness as no different from something like diabetes. When I found out what diabetes patients go through day to day, and across their whole lives, it resonated with me, and helped me very much. I could see my own chronic illness in context with another chronic illness. It helped to diffuse some of what at the time was still a heavy and suffocating stigma surrounding anything to do with mental illness. Nobody talked about it, but some people, once in a great while, simply disappeared, or died “and police report there were no suspicious circumstances”. It took me a long time to understand this bit of code.

Another thing that caused me problems when it came to taking medication as a teenager was my dad, who was generally against medication for anything, and would wheel out the old chestnut, “pills for dills with aches and ills”, which was to say, only an idiot takes pills. The rest of us are too smart for that. And he would use that to justify not taking anything for himself, and that undermined my own efforts to keep at it.

The most serious problem I had, as a bipolar patient with psychiatric medication was this: when on a manic cycle you feel so ridiculously great, at least at first, for a while, maybe at least a few days to a week, is that it’s like your whole brain has gone somewhere nice on holiday and is lying by a pool sipping cocktails and wearing sunglasses. You feel crazy-good, and you’re obviously not remotely sick, can’t you tell? So why do I need to take these stupid pills?

When you feel so fantastically upbeat, so cheerful, full of mad energy, hardly needing to sleep or eat, the last thing you want to do is take pills. And yet that’s exactly when you need to take them. I have had the conversation with my mum where she tells me the fact I feel so fine only proves how sick I really am.

I went into the hospital to get off the Uncle Fester of the tricyclics, Clomipramine. My doctor and his team went through several different replacements, trying to find a new drug that would,work as well as Clomipramine, but which would bring with it a much less nasty side-effect profile. We tried all kinds of things—so many I don’t remember them all. I do remember the misery, the crying, the constantly dashed sense of hope.

In the end, after I had spent a total of five months across three separate hospitalisations, one of my doctors told me they were not only running out of ideas, but they were up against the question of whether they were starting to actively cause harm.

So they had one last suggestion. “We want to put you back on a tricyclic,” the doctor told me. Yes, the Addams Family of psychiatric drugs. I couldn’t believe it. When I spoke to my senior doctor, and expressed my concerns, he understood my frustration, but he explained that my problem was that I had “treatment-resistant major depression”, and that for such a serious condition you need a heavy-duty drug, a weapon, something proven. All the drugs I’d tried up to this point, all the modern Italian supercar drugs with their fancy biochemistry and low side-effect profiles, were simply not up to what I needed. I needed something like a Monster Truck.

And, as it happens, there are tricyclics and there are tricyclics. This new one was Nortriptyline, which you might think of as the “Gomez Addams” of the tricyclic family. It’s the “good” one, with the most benign side-effect profile.

It works terrifically well. But it is a typical psychiatric drug, and then some: it really wants you to gain weight. (I have more to say about this later in the book. But my doctor putting me on Nortriptyline has had enormous consequences, and changed my life.)

That aside, it’s working well. I feel fine, even better than fine. I’m functional without serious compromises. I’ve gone up a level. I’m no longer, as of eighteen months after leaving hospital, “in recovery”.

It’s all working, at least for now. I’m having to take a great many little tablets every day, including four different psychiatric medications altogether that do different things. But the main driver of “how I’m doing” from day to day is Gomez himself, the Nortriptyline. The difference in how I feel now from how I used to feel under the Clomipramine is stark. Like the difference between old black and white standard-definition TV and 4K UHD TV on a screen as big as your wall. The difference is breathtaking. Because I remember those Clomipramine days, years. It was like living in Cold War East Berlin. And it seemed normal.

Where do I live now, in my head, on these meds? I don’t honestly know. But the sun shines, the sky goes on forever, and the gum trees smell of lemon.