MISOPHONIA–THE TROUBLE WITH SOUND

We were out at a cafe, middle of a sunny Saturday afternoon. I was on day release from the hospital, and all excited that I could go home for the afternoon and evening.

The cafe was quiet, with only a few other customers, three of whom were trying to chat up the girl behind the counter.

A guy comes in, and orders a coffee. Girl behind the counter, pleased for the distraction, gets busy making coffee.

Michelle and I sat in the middle of the cafe, with plenty of unoccupied space around us. Another member of the cafe staff was sweeping or possibly vacuuming at the back of the room, because the place would close for the day pretty soon. We were among the day’s last customers. Michelle and I enjoyed our excellent coffee and cake. Michelle turned pages of the newspaper.

The guy got his coffee. I forget what he ordered.

As we’ve seen in coffeeshops in North America, this place had a separate bar area, in the middle of the room, right near our table, where you bring your coffee to add sugar, flavourings, and so forth. The guy with his coffee comes over to the bar. He removes the white lid.

Up to this point, everything is okay. I’m feeling a bit angular, a bit round-peg-in-square-hole, as don’t quite fit into this reality. By this point in my hospitalisation, I’m still a building-site, with part-built cinder block walls, a slab of concrete, and big piles of sand everywhere, with a scattering of construction-crap here and there. I’m a work in progress. But just at this precise moment I’m doing okay.

Then the guy with the coffee puts some sugar in his coffee.

I’m still okay.

Coffee Guy grabs a thin wooden pop-stick and begins stirring his coffee. It makes a little, repetitive sound as the stick bumps against the inside surface of his cup. It’s very faint. I can only barely hear it.

Even though that other cafe worker is still either sweeping up or vacuuming, and even those idiots at the counter are still trying to flirt with the barista girl, and even though Michelle is still poring over the rustling newspaper pages–

ALL I CAN HEAR IS THE GUY STIRRING HIS COFFEE AND I’M STARING AT HIM AND FEEL VERY MUCH AS IF I COULD KILL HIM WITH MY BARE HANDS.

I want to yell at him, though he is not even a metre away from me, to, “PLEASE STIR YOUR COFFEE QUIETLY!”

It feels exactly as if someone, some utter bastard, has insulted your sainted mother’s honour. As if someone is coming right at you with a wicked knife, and you know they will try to kill you.

It feels like you know, in the most fundamental cells of your marrow that if you don’t get up right now and leave, Something Bad will have to happen. And that guy is STILL stirring his coffee.

We leave. I sit in the car, breathing hard, my heart galloping, my hands shaking, nerves shredded. Adrenaline is gushing through me. Worse, acute mortifying embarrassment, shame, and anger are along for the fun-ride as well.

Because this is not the first time this has happened to you, and won’t be the last.

All last year, in hospital, I told my doctors I had this weird, debilitating sensitivity to certain sorts of sounds. Quiet sounds, repetitive, often at a high pitch but not always. Biological noises like chewing food, even soft food, the wet, smacking noises of people eating, even with their mouths closed. Chairs dragged across floors. Last year, as I came off my old medication regimen, I began to have this problem. My doctors understood that it was a sort of anxiety, but they knew little about it, and, as they had stared at me blankly about my writing-juju going away, they stared pretty blankly about this. Staff gave me anti-anxiety meds to ease things off.

All day long, from first waking to switching off the reading light at night, one of these noises could occur at any moment. And every time, I felt like murder. If you could in fact kill someone with your gaze alone, I would now be one of history’s greatest monsters. There would be bleak but popular anthemic songs on the radio, “He just don’t like chewing”. Everywhere I went, I was on alert, on edge, primed and ready, because it was only a matter of time before somebody nearby clicked his pen over and over. Or before I heard someone using a knife and fork against a china plate, making a little squeaking sound. There was always something.

One of my doctors one day asked to see me, and she gave me a printout from the web, with a Post-It. This problem I had, it turned out, had a name, and there were other people out there with it, or variations of it.

It was called misophonia.

The Post-It had info about a Facebook support group. The printout was from a website acting as a clearinghouse for reliable information about it. Which wasn’t, and still isn’t, a lot. The reason my doctors stared at me so blankly was because it’s a newly classified condition. There is very little research out there, but what there is so far suggests it is a neurological condition in which the fight-or-flight response in your brain is set off by these sounds. It bypasses conscious thought, and goes straight to those parts of the brain that control your response to threats.

Your brain is freaking the hell out because your lovely wife sitting next to you on the couch is eating a TimTam.

Once I’d digested the information the doctor had given me, I could have hugged her, I was so happy to know that it was a real thing, with a name, and that people are working on it. To know there are other people out there likewise freaking out because someone’s idly tapping their feet against the side of a table.

Mine seems closely correlated to depression and the anxiety that goes with it. I can tell when I’m not as well as usual, because I notice little sounds–suddenly I’m staring-as-if-to-kill at someone or something. When I’m doing better, those same sounds don’t bother me so much. It comes and goes, bit for some people it’s a constant thing, always on, always with the same intensity. On the discussion forums there’s a lot of talk about noise-cancelling headphones–are they worth the considerable expense? (Mostly. Peace of mind is worth paying for.)

What has also helped is working with my psychologist on various mindfulness-based approaches for helping to change the way I think about noise. And to stop me doing what some people with the problem do, who never leave their homes. The world is too full of threatening noises. And it is, too, but it’s better, quality-of-life-wise, for me at least, to try to stay in touch with the outside world. I’m reclusive enough at the best of times without adding this element.

One weird thing about misophonia: the noises you perceive to be threatening, that make you want to kill people, are perfectly okay and fine if you are the one making those noises. Michelle comes home from work, feels like an icecream on a stick. These come in wrappers. If she unwraps it, it would set me off. If I unwrap it, it’s fine. So I unwrap everything now.

I have had to learn to adapt the way I approach my life. It’s difficult, especially when, after a long period of feeling fine, you have a relapse, and suddenly it’s as if you can hear bugs giggling and tap-dancing because your hearing is so acute. People around me have had to learn to adapt as well. I hate and feel embarrassed that because of a problem that I have, other people have to tip-toe around and mind what they do. It bothers me very much. I have issues. But I can work on those.

THE WRONG LENSES: a Postscript

Earlier today, feeling fine, I posted a long essay about my anxiety last year over our wayward, unreliable scales, and my need for accurate information about my weight.

Now, while it’s not that I regret posting it, I am feeling deeply stirred up about it. That whole experience, the intensity of my neediness, my self-hatred over the effect it was having on Michelle, was dreadful. When I think about what a shit I was, how I often I felt the urgent need to apologise, because I knew Michelle was fed up. She was doing her very best to humour me and help me, and was utterly wonderful, despite a very demanding job. Writing about that time reminded me, even made me re-experience to some extent, that same sense of need and shame, how horrible it was, and one of the most horrifying things was knowing it was affecting those people closest to me.

Anxiety about anxiety. Thoughts about thoughts. Feelings about feelings. The thing about my sort of mental illness is it’s like when you’re at the optometrist, and you’re sitting there with this thing against your fave that makes you look a bit like a suburban Aztec Sun God, only in a t-shirt and tracky pants, and the optometrist is slotting different lenses into the Sun God mask device, and you say, “better” and “worse” until he gives you a lens with which you can see clearly. The illness is like all those wrong lenses. It distorts everything you perceive, and you sometimes don’t understand how much its affecting what you see–but sometimes you’re only too aware, too hyper-conscious, that you’re looking through a very wrong lens, but you can’t help it. It’s your whole brain that’s wrong.

You know it’s wrong, and that people around you are upset, but there’s nothing you can do. You’ve got the wrong lenses in. You’re waiting for your doctor to find you the good lenses, so you can see the same reality as everyone else.

Sorry, Sweetie.

THE SCALES

NOTE: This is another long one. 2200 words.

The scales were crazy. I couldn’t trust them. Michelle was fed up with hearing about them, and unusually for her, she was prepared to tell me she was fed up. All I knew was that I couldn’t trust them, and I had to have scales I trusted because not knowing my weight from day to day was making me mental.

This was me during a nasty period last year. I was extremely agitated, vibrating with chest-hammering anxiety, and was desperately worried. I forget now what meds I was on at the time, and it doesn’t matter. Because the only thing that mattered at that time was having accurate data about my weight.

Context: four and a half years ago, in December 2012, the same year I shattered my elbow, and required surgery and five long painful months of rehabilitation, I weighed myself on December 28, and found my weight was 165.5 kilograms.

My psychiatrist had been encouraging me for some time to consider some kind of weight-loss program, but I was the fat guy who resisted all such suggestions, or who made only half-hearted, soon-forgotten “commitments” to it. I was a writer, too, and spent most of each day at my desk, in front of the computer, sometimes actually working, and sometimes goofing off, usually on Facebook (mortal enemy of writers everywhere). I was pleased to have my arm back working again with full flexibility and function, and loved to tell the story, because it made me look good. What didn’t make me look good was my ballooning body. Having the busted arm made me even less active than usual, a level of inertia matched only by the likes of materials frozen to absolute zero. I was a blob, and felt like a blob.

Even worse, my knees had been screaming for ages. So loud, so intensely, that I was inclined to believe that other people could hear them crying out in agony at having to support their unbearable burden. My GP had diagnosed osteoarthritis. I had been having cortisone shots, and was chewing through major painkillers. My screaming knees were a big factor in my inertia: activity hurt.

My psychiatrist, one day, in the course of talking more about the need for me to lose some weight, suggested iced coffee protein shakes. There was this whey powder stuff, he explained, and told me all about it. I had tried commercial high-protein diet shakes, and had not liked them. They left a nasty chemical aftertaste in my mouth. Combine that with a general sullen refusal to deal with my weight, and that was that. But this thing my doctor was talking about sounded different. He convinced me to have a go.

The whey powder was a body-building product, which puzzled me. I had been expecting something from the weight-loss industry. It smelled good when I opened the giant container, and when I mixed it up as directed in the blender and tried it–it was good! No chemical aftertaste! It tasted better than iced coffees I’ve paid upwards of $6 for in actual cafes! I could not believe my, well, my taste-buds! This was something that might work.

As well, I signed up for adult swimming lessons. I never quite learned how to swim properly when I was a kid, so had never been much of a swimmer, and never went near deep water for fear of drowning. And swimming lessons, though exhausting, were marvellous fun.

The weight started to shift. The protein shakes twice a day plus a bit of exercise was a difference. I stuck with the shakes, and the swimming lessons. After a while I added pool-walking as well, charging as hard as I can up and down the 25 metre lanes 80 to 100 times, trying to get my heart pounding as fast as possible.

People started to comment about how I looked like I lost weight. They started commenting about my face. My swimming shorts appeared to grow so large and hot-air ballon-like that I needed new, smaller ones.

Then one day I noticed that my knees had stopped screaming. When I went to see my GP, my vital numbers were good. At the pool I was racking up literally thousands of walking laps. People would stop me on the pool deck to tell me how I’d lost an amazing amount of weight, and it looked so good. I needed new clothes. I could finally get all the funny and geeky t-shirts I’d always wanted but couldn’t get because I was too big. So many things I hadn’t been able to enjoy because I was too big.

Example: after I finished my first term of swimming lessons, I felt deeply empowered, that I’d really done something good for myself. What else, I wondered, could I do? What did I want to do? One thing occurred to me. I’d love to try sky-diving. But when I looked up sky-diving services here, they all insisted on a weight cut-off of 115 kg. And at that time, I was still a gelatinous monster.

So I decided: I was going to get to 100 kilograms, and when I did, I was going sky-diving. This would mean a total weight-loss of 65.5 kg.

And, flash-forward four years, I was in hospital (ostensibly to get my medication changed to something more effective, and with fewer nasty side-effects), and, as I had been doing every day for years, I was weighing myself every day, at noon.

I had gotten my weight down to 114.3 kilograms. This was a loss of 51.2 kg over that four-year period.

People would tell me I’d lost a whole person. In the supermarket I saw 25 kg bags of rice, things the size of mattresses, so heavy I couldn’t shift them. And I thought, I’ve lost two of you bastards. I was on my fourth pair of swimming trunks. The shirts I was buying were two sizes smaller than I used to have to get. My knees were silent. At IKEA, I could race up the stairs to the first floor without even breathing hard, and with no knee complaints. My wife could hug me and reach her hands all the way around. I felt light. My older clothes hung on me like curtains, or circus tents.

But I was now in a psychiatric hospital, and the doctors were changing my medications around. They were all agog that I’d managed to lose that much weight while on 250 mg of Clomipramine, notorious for its weight-gain side-effect. My psychologist said I was probably the only patient in that hospital who was losing weight, because psychiatric medication is often a total bastard about weight-gain.

And that was the problem, right there. I was terrified, after four years of continuous, obsessive, grinding effort, of the weight coming back. The thought, and the fear, obsessed me.

I needed to know what my weight was doing from day to day. Needed it like oxygen. Needed it like water. Like heroin.

And I could not trust the scales.

We had bought them years ago, once my weight-loss campaign showed signs of success. Prior to that I borrowed my parents’ bathroom scales. It was on their scales that I first learned about the 165.5 figure. A figure so horrifying, so mortifying, that when I posted about my weight-loss efforts on Facebook I referred to it as OMG! kg, and each successive milestone as OMG! minus the total I’d lost, such as OMG!-51 kg.

That figure was and is important to me. Everyone in the family understood that, but even I didn’t understand how OBSESSED I had become about it.

We bought our own set of scales. When they arrived, the first thing to do was to calibrate them against my Mum and Dad’s scales. The new scales showed they varied from the others by about +1.3 kg, so whatever figure they showed, I had to subtract 1.3 from it, and the data would be consistent.

This was fine for a long time. I periodically checked again with the parental scales to see of the error remained the same. Here you can already see the beginning of the obsession, the madness.

Because, after a while, the amount by which our scales varied from the parental scales changed. Sometimes it was +0.8 kg, and sometimes as much as 1.5 kg.

By the time I was in hospital last year, our scales were about four years old, and they were showing truly distressing numbers that made no sense. My weight appeared to be climbing. I asked my parents to lend me their scales. They showed I was not gaining weight.

But sometimes they did show that I was gaining. During my first hospitalisation, at one point I was put on Seroquel to help me sleep, and to help with anxiety. This first hospitalisation was also the worst, the most harsh and distressing. I was in a terrible, deeply fragile state, barely holding myself together, even worrying my doctors. Seroquel was a wonderful drug for sleep, but it has a dreadful reputation for weight-gain. I keep a daily chart of my weight, and it showed a sharp upturn corresponding to the time I was put on Seroquel.

There were, across all three hospital stays, and even since then, since I’ve been home, numerous incidences where a medication seemed to make me gain weight. Between the effects of being strung out as I went from drug to drug, and my worries about my weight, and the NEED to preserve the weight-loss I’d achieved, I needed reliable data, dammit.

Michelle allowed me to buy new scales. I could, like a Cold War spy in a LeCarré novel, no longer trust the old scales. I lashed out and got the Fitbit Aria scale, which looked truly space-age, all white and sleek, and supposedly just bursting with all kinds of chewy data, and dying to work with my Fitbit Flex wristband thingy. It was fabulous, and I was dead excited.

Except, once it arrived, Michelle rolling her eyes by this point because she had had a gutful of me and ScaleGate, it didn’t work. In fact it would not work. I Googled support forums, and found loads of disappointed customers, who had found, as I had found, that the scale used a different wifi protocol from what we used in our household wifi. I either needed to buy new scales (Michelle’s patience gossamer-thin by this point), or buy an older modem that supported the older wifi protocol.

I could see this was deeply upsetting for Michelle. My parents, too. They essentially gave me their trusty, reliable scales to use in the interim. Michelle took the Aria unit back, and got a refund. I swotted over the JB HiFi and Officeworks sites online, looking for new scales, because I had to have reliable data.

And all the time I could see in Michelle, when she came to visit, how stressed she was. It made me ache and burn with shame. I was doing this to her. My stupid, pathetic, useless anxiety, and my even more stupid, pig-headed pride, was doing this to her. And yet I could not let it go. I had to have reliable data. Had. To. Have. It.

Had.

To.

Michelle agreed to one, final set of scales. But she told me This Was It. I felt cold all through. I found a new set of scales, a German brand which looked reliable, and the unit seemed to offer lots of data. It was also much cheaper than the Aria. When it arrived, it worked. When checked against Mum and Dad’s old reliable unit, the new scales agreed with it perfectly. It was weighing-machine kismet.

Peace reigned across the Kingdom. Birds chirped, bunnies hopped, and the sun shone. All was well.

Then, right at the end of my third hospitalisation, my doctors, in despair over what they could give me that was strong enough for my “treatment-resistant major depression”, and yet whose side-effect profile was “weight-neutral”, they fell back on another tricyclic antidepressant, the same drug family as the

Clomipramine from which I was released back in my first hospitalisation as we began to see what else might work. We had gone through everything, and now we came back to the tricyclics, and of those, Nortriptyline was said to be the least obnoxious in its side-effects.

Except for the weight-gain.

And the increased appetite.

The struggle against my weight continues. Nortriptyline seems to be a terrific drug. I give it four stars! But my weight is nuts. Since leaving hospital six months ago, I’ve regained nearly ten kilograms. Right now I’m trying diet and exercise ideas to try and get back to where I was, but it’s hard like calculus and hard like breaking rocks. My psychiatrist has some medication ideas he wants to try. I’m doing mostly okay. The frenzied, fluttering-bird anxiety has eased off to a great extent. I’m 90% fine.

And godammit, I’m still planning that sky-diving trip.

WRITING AND SILENCE

Last year, for the first time in my life, I lost access to the part of my mind that has always made me want or perhaps need to write. Where I used to hear from that part of my mind all the time, as if listening to a constant chatter from a radio station aimed only at me, suddenly, in the midst of my illness and treatment, that radio station went off the air, leaving nothing, not even static. It, the creative, scribbling part of me, felt dead.

I had known quiet or fallow periods in the past, and was well familiar with manifestations of “writer’s block”. I sold my first two novels in the same year, during the 90s, and while deeply pleased about this I was also deeply worried about following up with a third book. What if it wasn’t as good? The usual “difficult second album” anxiety, only transferred to the prospect of a third book. I tried all kinds of things, and started in on different projects, each time thinking this would be the one. But no. I got so anxious about this that I stopped even trying to write, and fell silent.

But my head was not silent. I was still getting at least, as it were, “carrier wave” from that radio station. There was just no programming, no content, but the station itself was there and transmitting normally. In the end, as this silence went on, and I became more and more bothered by it, I ended up making a New Year resolution of, “this year I’m going to write a book even if i kills me.” My psychiatrist suggested I try writing longhand, rather than use a keyboard, to see if the unfamiliar writing method and environment made a difference. It did. I sat each day and scribbled out pages of what I knew was utter rubbish, but I didn’t care about that. I was writing. A story was being told. The story sucked, but that was fine. One thing led to another. The ice cracked and thawed. The radio station resumed transmissions, and I ended up with a third novel, Hydrogen Steel.

But last year, while I was in hospital, and during a time when my biochemistry was utterly out of whack, one day a strange silence in my head showed me that the radio station was gone. Or, if not gone, then I could no longer receive its signal due, no doubt, to interference at my end.

It was one of the most disturbing aspects of the entire experience, and one of the strangest things I can remember ever happening to me.

I have written, and wanted to write, since my earliest days. Some of my earliest memories involve stories, books, being read to, and reading books myself. I devoured shows on TV, then wrote imitations and transcriptions based on what I could remember about them. This is how you learn writing: you learn writing by imitating and copying other writing, and other stories. This naturally makes you produce derivative bollocks, but you get past that and start getting your own ideas. Even with the stuff you’re writing based on other things you’ve read and seen, there are flashes of crazy original stuff, embellishments and improvisations, that are all your own work. And over time these things become what you write about, and become the basis of your creative voice.

My creative voice died, though. It went away, and it was as if it had never been. It was like the characters in 1984 who get deleted from history, and suddenly never existed, because people like Winston Smith assiduously edit the official record of the past, to remove all trace of them. The part of me that has always, always written, was likewise deleted.

I told my doctors about it. They would stare at me, astonished, and baffled. This was not a symptom or side-effect they knew about, or were expecting. And it was, indeed, most likely a consequence of the huge mental earthmoving operations going on in my brain. My brain was very likely simply too busy dealing with withdrawal from one medication and the phasing-in of another. I went through a great many medications, trying to find something that worked, and which didn’t bring with it unbearable side-effects.

I was not used to this silence. It was startling. I grieved for the loss of that radio station, and for the person I used to be because of it. It made me who I was. I was a writer before I was anything else. But if writing was gone, what was I now? If I wasn’t working on my writing, what would I do with my life? What would I do? I’m a guy in his 50s: the statistics about employment opportunities for men my age were not encouraging. But questions of work and employment aside, this felt to me like an existential question: what am I now?

You’re reading this essay (I hope someone is reading this essay), so you know Adrian got his groove back. You know there’s something like a happy ending here, though I am suspicious of tidy endings. I am writing lately, and even writing every day, which is marvellous. But I don’t know if this is the new normal or what the future holds. Me and everyone else in the world, I suppose.

But this time last year there was the real and confounding possibility, indeed a likelihood, that I could perhaps be made well and whole again, but that I would lose my creative mind. I might no longer receive those transmissions. How did I feel about that? Was that an acceptable price to pay for being able to function in the world, to live my life?

A great deal of reflection did remind me that I did have one very serious, very important job, quite apart from my writing life–I was husband and partner to my wife, Michelle. She is the breadwinner in the household. Michelle works for Clinipath, a commercial pathology firm, where she works the evening shift in the Haematology section. My job has always been to look after everything else, more or less. My psychiatrist reminded me of this one day, pointing out, “you’re the drummer, but you want to be the lead singer”. My doctor has a way with metaphors! But he was right back then, and the thought remained true last year, in the midst of my strife. Even if I was no longer a writer, so what? I was still Michelle’s drummer, maintaining the steady rhythm in the background that allowed her to do her thing. Michelle doing her thing got us this far. Our house, for instance, is all paid for. We have a nice car, and very little debt. Michelle has managed to accrue savings, and we live in privileged comfort.

But could I live with “just” being the drummer? Could I bear no longer hearing from the radio station? They say you can get used to anything. I recently read Viktor Frankl’s Man’s Search for Meaning, which includes his memoir of life in Nazi concentration and death camps during the war. Even he says you can get used to anything.

So what happened? Why am I writing again? And so much, so often? I had been waiting for my condition to settle down. I’d been waiting for some sign or indication that I was no longer sick, that my ordeals of last year were over. That I was well. I explained this to my psychologist. She told me that maybe I could use writing as a form of self-therapy. Maybe I could write my way to wellness.

Since starting this journal, I have indeed felt much better about things. I’m starting to get the occasional signal from the radio station. Writing is causing writing. Writing is meaningful to me, and I’ve read (in Frankl’s book among other places) that pursuing activities and occupations that are meaningful to you will lead not to happiness but to a sense of contentment. So I’ve been doing everything I can to pursue meaningful activities. All the things that are important to me, from writing to weight-loss, I’m pursuing as hard as I can. And it seems, so far, to be working. I feel quite okay. I don’t know, at this moment, if I will ever write another novel, but I do feel that all this writing will one day lead to some sort of memoir, or at least that’s the aim. And that might be enough.

Meanwhile, I’m Michelle’s drummer. I can do this.

MEDS

Every single day since I was first diagnosed (labelled, classified, boxed, categorised) in August 1979 I have taken some sort of medication for my condition, and sometimes a lot of it.

It’s a weird thing to get used to. When the stuff works well, you feel so good you don’t see why you should take it. Because you’re clearly fine, and you are prepared to fight anyone who tells you otherwise.

One of the many things about psychiatric medication is that not only does it work on only 50% of patients, is that they all have what’s called a “side-effect profile”. Sometimes you can be on a medication that seems to work very well, and you feel quite okay, except your mouth is always dry, and you have no saliva. Or which works well, but every time you stand up you get dizzy and nearly fall base over apex.

Or, if you’re on, say, lithium carbonate, which was my first psych medication way back when I was 16 and scared out of my mind, one of the things scaring you is that these big white tablets with the metallic aftertaste come with a requirement that you have quarterly blood-tests to monitor the level of the drug in your system, because it’s poisonous.

I was on lithium for a long time, years and years. It made my hands shake with a tremor so visible people would ask me if I was all right. And with that visible tremor comes a self-consciousness that makes you feel monstrous. That you’re a freak and a weirdo. Bad enough that you’ve been labelled “psychotic” (see previous post), but you are only too aware, all the time, that mental illness is not a cool thing to have wrong with you.

For one thing, it’s invisible. You “don’t look sick”. You look more or less fine. Someone else with a background in the world of mental illness might see the hand-tremor, the way your leg won’t stay still, the haunted and drawn look around your eyes, the way your pupils are either too wide open or too closed shut–that person will know who you really are. But to everyone else you’ll look okay, but perhaps you had a big night last night, eh?

Medication is a proper bastard of a thing, but better, in my opinion, than the alternative. And there are alternatives, especially these days. Medication, when it works, makes you feel more like yourself again. It might even make you feel like a better, upgraded version of yourself.

But for some people, it makes them feel blank or numb, or like they’re wrapped in cotton wool. It takes away all their feelings, not just the ones urging them to hurt themselves. For people in my line of work, the scribble caper, you hear of people worrying that medication will take away their way of writing, or distort their personality in such a way that their writing will be affected. Or, if they’re writing while taking medication, how much of what they produce is them, and how much is it the medication? People get extremely upset about this worry.

I’ve had six books published since 2004. I wrote all of them under the influence of medication. I also wrote another 15-20 books since I was about 18, all of which were terrible, again all under the influence of medication. I never worried too much about the drugs messing with my ability to write. For me, I could see that the drugs allowed me to write. They gave me enough clarity to use my creativity and artistic judgement so that I could, over time, improve my skills, such as they are.

I also know for a fact that mania and depression, distort not only your perceptions of the world around you, but also take away that sense of artistic judgement. Mania, in particular, provides boundless energy and excitement, and seems like the greatest, most amazing feeling ever, and you can write and write and write for days on end–

And it’s all crap. It’s just like when you have a really great dream full of brilliant ideas and insights, but when you wake up you realise it was all nonsense. The creative work you do under the influence of the illness (manic or depressed) is like those dreams, but you’re awake when it happens. Your artistic, critical faculties are simply not there. So you think all your ideas are fantastic and insightful. Not only that bit you’re funny, so funny! So funny, and for so long, that you wonder, idly, why people around are looking at you all uncomfortable and even a bit scared.

Some bipolar patients love the creativity burst that comes from the euphoria of mania and hypomania that they either refuse medication or they only take it sometimes. I have heard of people saying they simply can’t work while medicated. I’m not one of them, but I understand the point of view.

Other than medication there are other options for treatment. The one perhaps most commonly offered, usually in combination with medication, is the so-called “talking cure”, or meeting with either a doctor, psychologist or counsellor to discuss what’s going on in your life, your emotional state, and your troubles in general. Psychologists and counsellors also offer their clients much more time per visit than a typical psychiatrist can offer, which is good. The combination of medication and talk therapy can be highly effective, and I recommend it especially for people given to deep introspection and reflection, thinkers and artists of all kinds. Lately I’m seeing my psychiatrist each fortnight to discuss my medication regimen, and I see a clinical psychologist every two to three weeks for long talks about thoughts, feelings, memories. It was her suggestion that I try journalling like I’ve been doing.

Other unmedicated forms of treatment also include ECT (electro-convulsive therapy, which I’ve not tried), and a newfangled treatment “modality” called “rTMS”, or repetitive Transcranial Magnetic Stimulation. This latter I have tried, and am likely to be having another course of it soon (which I’ll report, if so). You sit in a chair that reminds you very powerfully of being at the dentist, and a machine on an articulated arm is positioned against the side of your head. The idea is that the machine produces an electromagnetic field which interacts with the electrical activity in parts of your brain, and brings about a therapeutic effect. You need up to 20 daily treatments, each one taking about half an hour. The experience is not unlike what a woodpecker attacking the side of your head might feel like. It’s loud, making a repetitive snapping or clicking sound, as each “train” of zaps occurs. It sounds unlikely, but this treatment has been shown to be effective for many patients, especially those for whom medication is not an option.

I don’t know how many medications I’ve tried in my life as a patient. First I was on lithium and a drug called Doxepin, but after several years the lithium seemed to have stopped working, and my doctor and I embarked on an epic search for a new combination of drugs (usually an antidepressant and a mood-stabiliser: this latter would prevent manic phases, while the antidepressant lessened the severity of depressive cycles). I tried all kinds of things over a long period. We worked systematically through the MIMS catalogue, trying to find something that would make me feel normal, while having the least intrusive effects. It was very much like what happened to me last year, only it took longer because I was an outpatient, so things couldn’t be rushed.

Because with these medications, it takes time to ease onto them, and further time to phase them out. If you start or stop suddenly you’ll be hit with diabolical side-effects. The point of putting me in hospital last year was to enable a faster approach to this than would be possible if I were an outpatient, since I would be in a safe, controlled environment with lots of support and staff monitoring how I was going. And yet, despite all this, it was hellish. First the full depressive cycle that was like a new full-scale breakdown just like the one from when I was a kid, then it turned out the new drug, Zyban, did nothing for me, leaving me still exposed in no-man’s-land while the doctors scrambled to find something else they could give me.

It took me a long time, when I was a kid, to adjust to taking medication every day, and especially on days when I felt fine. I didn’t understand the idea of “chronic illness”. That I would have good days and bad days. That you had to take the stuff, no matter what, to prevent hell-days.

Then one day I realised: it’s no different from diabetes. Diabetics take insulin every day to keep themselves going. People like me were the same. That did it. I stopped resisting at that point. The argument made sense.

The real problem is that bipolar and its related illnesses are physical illnesses, just like anything else, but they are known as “mental illnesses”. That qualifier makes them seem somehow less serious, less real, of less consequence than, say, diabetes. After all, “it’s all in your head”. But the fact is these are real, physical illnesses, as real as cancer, and in many cases as life-threatening as cancer.

One of the reasons I’m writing these posts is to help demystify the whole “psychiatric patient” thing. I’m a middle-aged man with a chronic illness. My medication is no different from what a diabetic would take. It’s a psychopharmaceutical walking stick. Imagine me gimping along with a walking stick. That’s me and how much I depend on my medication. It keeps me upright. Keeps me from falling over. And gives me a weapon, should I need it! 😉

HISTORY

[Note: this is a long post of 1740 words]

It was a clear bright August Monday in 1979, when I was only 16 years old, and I was scared out of my mind. My parents and I were sitting in the reception area of the psychiatric unit, ward D20, of Sir Charles Gairdner Hospital. We were waiting for a nurse to appear who would take me into the ward itself and get me acquainted with everything.

The waiting area was the sort of oppressive quiet that makes you feel guilty if you speak at even normal inside-voice volume. And in a place like this, a psychiatric unit, you feel doubly self-conscious, worried that people would hear you and know you for the lunatic you feel you must be in order to find yourself in this situation.

It didn’t look or feel like psychiatric facilities I’d seen depicted in movies and TV. There was a nice carpet and comfortable furniture. It looked more like a three-star hotel than it did like the kind of place featured in One Flew Over the Cuckoo’s Nest. I’d been expecting this latter, so finding this “nice” place was disorienting and stress-inducing in itself.

Some weeks before this, I’d been seeing a psychiatrist every week or so following what I was told was a breakdown back in June, when I’d been in a different hospital to have my appendix removed. One night just after the surgery (the appendix had been so inflamed it had been about to erupt into peritonitis) I found myself crying so much, and so hard, even nurses looked worried and scared. I remember it went on for hours. My mum was there as well as a nurse, and they got me through it. I still, decades later, don’t know what went wrong that night that led to this. I’d had some visitors come by, including friends from high school, and my folks, but some way into the visit I felt uncomfortable and stressed, and I asked if people would leave–and my next memory is lying there in bed howling like a baby.

In 1979 I was in my fourth year of high school, and I was in deep waters and couldn’t touch bottom. I was drowning, caught in a rip, and being dragged out to sea.

The first three years, I’d done very well in English, muddled along in things like Social Studies, and suffered horribly in Mathematics. In second-year high school I’d even failed Science altogether. I’d never seen such a thing before on a report card, a rude “F”. My parents were angry and mortified. I was humiliated, and felt a terrible weight of hot shame, that I carried into third-year, where I managed to do a bit better, but only a bit. The thing was, as happened when I was ten years old, and I had that day when I felt dead inside, I spent much of second-year dead inside, too. I remember sitting in Science class, just sitting, not listening, not writing, but sitting. I probably did this with my other classes, too, but I vividly remember my body occupying a seat in the Science classroom, but that I was only vaguely occupying my body. I was somewhere else, numb, remote, on the Moon. And I failed Science that year.

Back to 1979, two years later, when life in high school became much harder all at once. The first three years were like how primary school is to high school: all pretty slack and a bit of fun, but then things get a bit serious. In fourth year, things became deadly.

Fourth- and fifth-year were for kids who anticipated going to university after high school. Things became specialised: where we used to have “Science” we now had Physics classes and Chemistry classes, Biology and Human Biology. Where we used to have “Social Studies” now there was History, Economics, and much more. Mathematics metastasised into the numbered horrors of Maths 1, 2, 3, and 4–of which 2 and 3 were the most challenging, intended for advanced students only.

I had been assessed as being very bright, and a keen reader, so I was dropped into all the really hard stuff. I had Maths 2 and 3. Physics and Chemistry. History. And English (though not English Literature, a separate class). This line-up of classes was terrifying. I did not feel up to any of it, except English, which had been my great strength in the first three years of high school.

But the very first day of fourth-year English destroyed any feeling of security I had felt about my competence in that topic. The very first thing the teacher, a 30-something woman, said to us, perched on a stool at the front of the room: “Most of you will fail.”

She didn’t welcome us, showed no personal warmth. There was just this bombshell announcement right at the start.

And right away, sitting there in my grey poly-cotton shirt and grey cotton trousers, I felt something in me panic and die. I felt as if I had already failed. First I failed second-year Science; now I was going to fail fourth-year English. And English, of all things! The thing I was expected to ace! I was supposed to be good at this. By age 16 I was already a prolific writer, churning out vast numbers of truly-terrible science fiction short stories. I had entered and won the school writing competition a number of times (though had also often been the only entrant). I had decided, at 14, that I wanted to be a published author when I grew up. I was always reading, and always writing. Probably, when I was writing, I was also in a state of mania, my undiagnosed bipolar disorder enjoying a big upswing, manifesting as incessant typing.

Midway through fourth-year high school, in June, there were exams to see how everyone was doing. I was doing badly. I couldn’t do the mathematics, and I had no idea about the physics or chemistry. I had less than zero grasp of history (though it was interesting, at least), and in English I was drowning.

I did not know what to do. Sixteen years old, and doomed. I wasn’t going to university, and it was impossible to imagine anyone hiring such a dunce as I clearly was.

Oh, and there was bullying. There was bullying from other students, and there was bullying from teachers. Kids informed me early and often that I was fat, gay, sexually repulsive, dirty, unmanly, and useless in all respects. Certain of my teachers took the opportunity to inform me that I was dull-witted, a disappointment, and incompetent.

Then there was my dad, the poor bugger who was dealing with his own untreated bipolar condition, who didn’t understand why his bright, articulate, brainy son was struggling so much with school. I would get 8/10 for an assignment, and Dad would demand to know how I lost those two marks. Nine out of ten, the same routine. Ninety-five percent? How’d you lose that five percent? He thought he was being encouraging. All these decades later, he doesn’t even remember any of this. It’s strange, having a grudge against someone who has no memory of the events in question.

And, on top of all this, I was floundering so much in school in every subject that every night I had hours and hours of homework, sometimes as many hours of homework as hours I’d been at school. Grinding away all evening until a late bedtime, and even up early to squeeze a bit in before pedalling off to school for another day of abuse, confusion and despair.

In hindsight, the only real question is how did I hang on so long before that breakdown? Mum and Dad knew I wasn’t right. Two years before, when I was 14, the year I failed Science, the year of sitting and staring, they took me to a doctor, a specialist, who told them (I only dimly remember this event; what I know about it mainly comes from Mum) that I very likely had what was then called “manic depression”, but that for some impenetrable reason nothing could be done in the system until I had some kind of breakdown.

But once I had said breakdown, we were off to the races, so to speak. The whole rest of my life as a psychiatric patient began to unspool. In Sir Charles Gairdner Hospital, where I stayed as an inpatient for four months, they ran all kinds of tests, interviewed me a great deal, and encouraged me to follow a program of various kinds of group therapy, as well as other more recreational kinds of groups. The doctors sat me down fairly early on, and informed me I had this condition, a “bipolar, biochemical, affective psychotic disorder.”

This was devastating. Psychotic? The word leapt out at me, wild-eyed, with a knife in its teeth. Nothing good came from that word. It was the 1970s. There were terrorists who were sometimes called psychotic. Mad bombers were psychotic. Psycho killers were psychotic. And I was 16 years old with a vivid imagination. My life, I saw, was over. Who would marry me? Who would even go out with me? Who would have me at all? This fat, wretched, pimply, nervy guy–this psychotic?

Flash-forward 38 years, and I’ve been married 24 years to the wonderful Michelle. She took me. She had some idea of what she was getting, having had “my sinister secret” explained to her by not only me but also my doctor at the time. I made sure she was as fully prepared as possible.

And for almost all that intervening time I managed with just doctor visits and medication. I managed okay, well enough. I even managed to get some books published, and establish a dimly glowing pilot-light of a career as an author.

But the psychopharmaceutical wheels fell off in the past few years, and I slumped into a deep despond, which, last year, prompted my current doctor to suggest I “come into hospital for a medication change”. He said this would take maybe two weeks, in and out, no different from putting your car in for a service, up on the hoist, everything checked out.

A year later, I’m still up on that hoist

TOO MUCH INFORMATION?

Am wondering I should change my site name to TOO MUCH INFORMATION, considering what I’m writing about. If you have a view, let me know, please!

Also, I’m working on adding a page with links and details about my published books so far, and how to find them.

Is there anything else I should add?

A YEAR AGO TODAY, IN HOSPITAL

This is a piece I posted on Facebook a year ago today. It was a few weeks into my first hospitalisation, and I had been taken off one of my major antidepressants, and waiting for a new drug, called Zyban, to come up to therapeutic levels. In the meantime I was experiencing a full depressive cycle.

“Have had big chunk of medication, and am feeling more okay again. Was extremely bad there for a long while.

<an hour later>

You guys! I’ve just had the longest, most interesting, and kind chat with a nurse, who came down to see if I was okay, and who helped me talk through how I’ve been feeling, etc. (We also shared grumbles about the food situation.) A truly lovely, friendly chat. Could only have been improved with a coffee with a scenic view. I feel so much better (though that could be heavy-duty meds kicking in). Am all agog at how nice that was. 🙂

Ping Michelle Bedford; Marie Bedford. I’m sorry for worrying or upsetting you, but I was having the worst experience I’ve had in years. I will be talking to the doctor tomorrow about what this means in terms of the trial. Though the fact that I’m now clear of the Clomipramine but not yet at therapeutic levels of the Zyban suggests I might just be crawling through the barbed-wire no-man’s land between the effectiveness curves of two medication regimes.

Anyway, thank you, all, for listening to me tonight. It’s proving much harder a gig than I ever expected.

Oh, and you know what feels really quite strange? You’re walking around the corridors and riding the lift, trying to sort all this out, whilst feeling as though you’re going to melt down if someone so much as blinks at you–but random strangers still compliment me on my monster slippers! “Thank you,” I say, all voice of a ghost, and shuffle on.”

This conveys some of the wretchedness I went through. That was a very bad day indeed, featuring a great deal of crying. When it says I was having the worst experience I could remember in years, I wasn’t kidding.