Another Spectrum

Personal ramblings and rants of a somewhat twisted mind


Thinking about the lockdown

This post isn’t so much about the lockdown itself, but about my reaction to it – specifically as an autistic person and migraineur.

According to Lloyd Geering, it is thought – specifically language – that separates humans from other higher forms of animal life. With language, we can construct alternative realities (religion, stories, metaphors etc), communicate our thoughts and ideas precisely to fellow humans for example. Without language, we’d be little different from the great apes. I’m not convinced.

Apparently most humans think in words. Take for example, the wife. I’ve asked her how she thinks. She grew up knowing only the Japanese language, but studied English literature in University. As she describes it, she thought in Japanese. For the first few years of living in Aotearoa New Zealand, she continued to think in Japanese and it was necessary to translate English conversation into Japanese, consider the response and then translate that into English to reply – a process that was quite tiring.

Eventually she started thinking in English, which is how she says she processes her thoughts today. However she still retains the ability to think entirely in Japanese and can switch from one to the other more or less on demand. Although the switch is a conscious move on her part, once the switch is made, no further effort is required until it’s time to switch again.

She finds the role of translator very tiring because of the effort of switching modes between the two languages. It becomes exhausting in very quick time. I notice that the sign language translators for our government officials have quite short stints, often requiring more than one person during a single address by the Prime Minister or other official. Mentally it’s hard work. I find this true with all communication.

Many autistic people seem to think primarily in images and it is necessary to translate those images into word patterns in order to communicate their thoughts to others. Here, some autistics will say that the effort to communicate with other autistics and neurodivergent individuals takes much less effort than when communicating with allistic (non-neurodivergent) individuals. As approximately 98% of the population is not autistic, communication with the wider community can be challenging and exhausting.

I have an almost nonexistent ability to form mental images even from quite detailed descriptions. Likewise, when it comes to recalling visual images from memory, I don’t visualise anything. I retain knowledge about what I must have seen, but more or less in the form of a wordless set of bullet points that I can translate into sentences if required.

I have in the past described my mode of thinking as thought bubbles that combine and split, similar to oil in a lava lamp. Each bubble contains a concept or groups of concepts that are constantly reforming through the splitting and recombining.

When it comes to communicating, I consciously have to go through the process of splitting a concept into groupings of progressively smaller ideas until they reach the size of paragraphs. From there it’s necessary to construct sentences, at first without words, and then to choose the necessary components of language in order to communicate in written or spoken form.

I reverse the procedure when taking in what someone has said or written. While the metaphor of bubble seems appropriate when it comes to levels approximating paragraphs and smaller, it is less appropriate for “higher” levels. They are more like clouds, having no clearly discernible boundaries and can combine and split is ways where it’s not possible to precisely know when they split or join.

So what has any of this to do with the COVID-19 lockdown?

Because the translating of thought clouds into words requires effort, isn’t instantaneous and is somewhat imprecise, I usually spend considerable effort practising the translation of ideas into words and refining them so that they will be intelligible to allistics. When I’m happy with it, I can store it away in memory from where I can recall and recite it, rote form, when appropriate.

Nearly all nonconsequential communication – small talk – comes from this memory bank of prepared sentences, both for what I say, and for matching input from others. Under normal circumstance, I need to constantly refresh what is stored, otherwise the content fades over time.

Since the lockdown, the necessity of, and demand for, using prepared sentences and phrases has diminished. So much in fact, that I notice I am not in a state of constantly refreshing existing ones or preparing new ones just in case they’re needed. The outcome is I feel less stressed. I don’t feel I’m in a constant state of rehearsing for a performance commonly referred to as life. Mentally, I feel relaxed, and for me it is quite a novel experience.

For many migraineurs, stress can be one of the triggers for a migraine attack, and I suspect in my case it’s a primary cause. Since the lockdown, the frequency and severity of migraine attacks has diminished significantly.

Particularly noticeable since the lockdown is that often a migraine attack goes through just the aura phase, with a shortened or nonexistent prodrome phase, acute phase (the actual headache and associated severe symptoms), and postdrome phase (the migraine hangover).

I appreciate that for most people, isolation and the lack of communication opportunities can be distressful and can cause anxiety and stress. On the other hand, I’m relishing it. Perhaps when this pandemic is over, I should consider becoming a hermit 🙂


The little things in life…

Sometimes the little things that one takes for granted can suddenly become huge issues.

Take for example my credit card. I’ve had a Visa card for decades, with the same number. I knew that number by heart, and it had a unique quirk: the number was such that it made an easily remembered pattern when typing it out on a 10-key keypad. In fact I memorised the pattern long before I remembered the actual number. Once every five years, I had to remember a new 3-digit CCV code, which I also had to update for online accounts, of which I have quite a number, but apart from that I gave the convenience of my credit card little thought.

All that has changed. My bank, in its wisdom, has decided to switch allegiance from Visa to Master Card and has issued me with a new credit card WITH A DIFFERENT NUMBER! If we can switch between telcos and keep the same phone number, why on earth can’t we do the same with credit cards?

To make matters worse, I can find no meaningful keyboard pattern to help me memorise that damn number. Hell, it took me more than a decade to learn the old one when I was younger than middle aged. Now that I’ve passed 70 and my memory isn’t as sharp as it was, how long will it be before I’ll remember the new one. I suspect I’ll be pushing up daisies, before that happens, in which case it’s not worth the effort of even trying to learn it.

On a brighter note, last week I revisited Countdown Supermarket during their “quiet time” and surprise, surprise! The pink/red lighting over the meat section had been turned off. Absolutely wonderful. It’s been so long since I was last able to browse the range of meat on offer, that I had almost forgotten what was available. And to be able to walk down an aisle towards the rear of the store without the need to avert my gaze is a pleasure I’m going to long remember!


Quiet Shopping – the verdict.

The wife and I arrived at Countdown a few minutes after 2:30, and the difference was noticeable immediately. You enter the store through the fruit and vegetable section and there all the ceiling lights were off and the only illumination was that that came through the front windows and lights from the chiller cabinets around the perimeter of the section. Immediately, I was aware that there was no background music, and the checkouts were silent – no beeps at all. The chillers were still noisy and the noise of the refrigeration units in the nearby deli ahd specialty foods could still be clearly heard, but over all it wasn’t unpleasant.

Throughout the rest of the store, the strip lighting down the centre of each aisle had each alternate fluorescent tube switched off. It was still a little on the bright side for myself, but the wife found it most pleasant. One aisle had all the strip lighting turned off and the only illumination was from the adjacent aisles. This was perfect for me, but perhaps inadequate for some.

Unfortunately the warm pink/red illumination over the meat chillers seemed even more prominent with the lower level of lighting and it meant that I had to be extra careful where I directed my gaze when heading in their direction. As the meats take up half the rear of the store, if I was by myself, I would need to traverse the store in a series of loops instead of a simple up one aisle, down the next. Something like up aisle 6, down aisle 1, up aisle 7 down aisle 2, up aisle 8, down aisle 3 etc. However, I realise that in all probability, I’m the only person that’s affected by this type of lighting, and can’t expect Countdown to be aware of this condition.

On the whole I enjoyed the experience, and will make it a habit of shopping there at that time. I’m not sure if the checkout operators enjoyed it so much. The scanner beeps were so quiet, that they often had to check the till screen to be sure that an item had been scanned. The volume could have been turned up just a tad to make their work a little easier.

wheretobuy_logo5Congratulations Countdown. Your effort is most appreciated by this reviewer. You are now my favourite supermarket in Feilding!


Quiet shopping

Sweet as! [Kiwi expression for “awesome!”]

Well, at least I hope so. Visiting the supermarket has seldom been pleasant for me. At worst it can be a migraine inducing and/or dissociative identity (autistic shutdown?) inducing experience that I would not wish on anyone.

In this town of Feilding, there are two supermarkets, and until recently New World was my Supermarket of choice. I avoided Countdown whenever possible, and it would take the considerable charms and persuasion, and occasional threats from the wife to get me to accompany her there. I never entered by myself.

However the world moves one whether one likes it or not.

New World moved to new bigger, brighter, but for me, most definitely not better premises. The acoustics are appalling, the lighting way too bright, and they’ve laid out the store in a similar manner to their opposition with the meat section along one wall at right angles to the isles.

I don’t know what it’s like in other parts of the world, but here, most supermarkets use warm red tone illumination to make meat products look more appealing. Unfortunately that lighting does trigger migraine attacks for me. And as it’s at the end of half the aisles in the store, I have to be very careful where I direct my view as I move along an aisle towards the rear of the store where the meat shelving is.

Why the “Sweet as!” at the beginning of this piece? Well, Countdown has just announced that as from this week all their supermarkets will have a quiet period each week specifically for folk with sensory issues: reduced lighting, reduced air conditioning, no background music, no public announcements (except in case of emergencies), the volume of the “beeps” generated by checkout scanners and registers will be reduced, no restocking of shelves unless absolutely necessary.

It’s only going to be for an hour each Wednesday between 2:30 PM and 3:30 PM but you can sure that I’ll be there. In fact I’m quite looking forward to it. I might even have some time to browse instead of the usual mad rush in and out.


Aging and autism

Today the wife and I visited The Feilding Craft Market. I look forward to such events, but always with some trepidation. And as I age, the trepidation becomes more pronounced. I’ve always understood the risk of such events triggering a migraine – being indoors, they’re where:

  • it’s noisy –  the noises and voices of hundreds of people wafting in and out of range, swirling together, becoming single strands and then breaking apart into a myriad of sounds before disappearing again into the hubbub. Sort of like an audio fireworks display in close up. It takes a huge amount of concentration to identify one sound from another.

    Is that someone talking? To me? A stall holder starts a conversation with me and the words of a passing mother to her child become entangled into the sentences, rendering the stall holder’s message unintelligible. Which words belong to who? I force a smile and move on. Was I rude. I don’t look back.

  • the lighting is uncomfortable – at least at first. after a while it becomes unpleasant, and eventually almost unbearable. The colour of the artificial lighting is wrong. It’s too white. The shadows are wrong. Their edges too sharp. Objects project more than one shadow. Textures and surfaces become exaggerated in the light, more pronounced somehow and become unpleasant. Perhaps a bit like how some people react to fingernails being scraped across a chalkboard. I squint in a vain effort to lessen the effect of the assault.

  • the air is thick and stifling – I can feel it as I drag it in and out of my lungs. It’s heavy. The smells of human bodies mingle with soaps, aroma oils, leather, wood, salami, coffee, herbs and spices. One moment in pleasant combinations, the next in combination that induce sensations of nausea. A woman passes with perfume so sickly sweet, and the food products in the stall in front of me turn from appealing to disgusting in an instant. I move on quickly as knot forms in my stomach.

  • it’s full of chaos and movement – People in a constant state of movement, avoiding each other with apparent ease, except with me, where we both end up doing a semi synchronised dance before one or other of us manages to get sufficiently out of step to allow a passing maneuver. Even worse is trying to overtake someone moving in the same direction but at a slower pace. I swear overtaking on a busy highway is less stressful and can be accomplished quicker and with less effort.

    Each and every movement is a distraction. I keep loosing my place as I attempt to read an information poster. Movement in my peripheral vision constantly causes my eyes to turn towards it. I look back as the poster. Where was I? Half way down? Never mind, the distraction has caused me to forget not only where I was but what I have already read. Start from the beginning again. No idea why I wanted to read it anyway. I move on as the stall holder approaches.

  • I loose the wife – again and again. Some people might say the place is a sea of faces. To me it’s a sea of eyes and noses, mouths, chins and hair. Which combination belongs to the wife? She’s 35 cm (14 inches) shorter than I am, so can eliminate most, but of course she’s usually hidden behind someone else. I see a hand waving above the sea of hair. It’s attached to a sleeve of the right colour, so it’s probably her. United again – at least for a few stalls.

  • there’s no personal space – While I recognise that my personal space might be slightly considerably larger than most, it seems that everyone else is willing to forgo theirs at such events. I’m not. I stop to watch a demonstration. Someone moves in beside me. Their arm occasionally brushes against mine. Far too close. Then I sense someone close behind. Definitely closer than 60 cm (2 feet). Time for a quick escape.

I managed to hold it together. I even cracked a few jokes with the last stall holders as they packaged up the dozen craft beers the wife decided to buy on the way out. I’d practiced a few jokes specifically for circumstances that would likely occur at such an event, and apart for the one that I had to ad-lib slightly and ended by being tongue-tied, they appeared to have the intended effect.

One aspect of aging that is become more apparent is that stamina becomes less abundant. While I suspect events such as the craft market have always been just as stressful, my ability to endure them has become less. – particularly over the last few years. The almost two hours we spent there was absolutely exhausting, and I think if the wife had wanted to spend longer there, I would have had to leave her there by herself.

When we arrived home, the tremors began, my hands shaking violently as I struggled to pick up snack and a drink. I felt very light headed and it took an extreme conscious effort to complete the steps necessary make myself an espresso coffee. The coffee beans go into the grinder, not the cup. The machine won’t heat up unless it’s switched on. You get the picture.

Very quickly I felt very tired and decided to lie down for a short time while the bread maker kneaded the dough. I woke up almost six hours later and the dough had expanded to the limits of space available in the bread maker. What’s good is that the sleep aborted a pending migraine. What’s not so good is that it won’t do anything good for my sleep pattern, such as it is, nor for the quality of the bread that has just been baked.

For five decades I had assumed that everyone experienced crowded environments in much the same way as I do, but that for some reason other people were less affected by the experience. Somehow they managed to overlook or ignore the discomfort that I believed they too experienced.

Since my autism diagnosis, I have gradually come to the realisation, that most people experience such events very differently than I do. They don’t find crowded spaces disorienting. They enjoy the social interaction. The sights, sounds, smells and bustle are stimulating and enjoyable, not overwhelming and torturous. We might live in the same physical world, but the way I experience it in its entirety is very different. This is especially so when we consider the social environment that, as human beings, we all must share.

The medical profession consider autism a disorder, and perhaps it is, but I and a majority of autistics perceive it as a difference, and in time I hope we, in the neuro-diverse community, are proved right. After all, only fifty years ago, homosexuality was considered a disorder by the medical profession, and some sections of society still consider what comes naturally to most people is wrong for gays.

What is becoming clear to me is that many autistic traits that most neurotypical people perceive as deficits are perfectly normal in light of how autistic people experience the environment around us. In a social order designed by and specifically for the autistic community, a great many neurotypical traits would also appear to be deficits.

In societies such as that we have evolved in Aotearoa New Zealand, cultures have to some extent integrated, but more importantly they have become intermingled, retaining their distinctiveness, while becoming part of a larger whole. This provides a more vibrant, rich and diverse society where we learn to appreciate not only our similarities but also our differences.

It’s true that in order to make it work for all, the dominant Pākehā culture must make significant adjustments, and we are moving along that path, although not as fast as it should. Some find it very uncomfortable. Likewise I’m looking for adjustments within the dominant neurotypical culture to allow not only the neuro-divergent community to exist (and there are powerful influences trying to eliminate it), but to encourage it to prosper. In the end we’ll all be richer for it.

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Why did I say?

I have at any one time, a number of unpublished posts on WordPress (currently 23 29). Some of these may eventually be published, but the majority are used by me as sounding boards where I write down and develop thought and feelings that exist in my mind but lack words or visual context. In a way, I’m translating my thought processes into a form that I might be able to use in dialogue with other people.

Outside of the blogosphere, I do exactly the same, except the thought processes are kept in small mental “notepads” where concepts have been converted into streams of words at various levels of completeness. During most of my waking hours, I’m constantly moving from notepad to notepad revising the content so that I can recite it should a need to communicate with fellow human beings arise. I find speaking “off the cuff” difficult at the best of times times, even with friends and family. I rely to a large extent on finalised or nearly finalised notepad scripts. I can really put my foot in it if the only appropriate script hasn’t been well prepared.

Quite simply, I don’t think in words or images, yet I’m unable to communicate with fellow humans without making an effort to convert “thought blobs” into strings of spoken or written words, otherwise known as sentences and paragraphs, or larger objects such as a blog post or opinion piece. I struggle with conversations because of the necessity to convert incoming words into “thought blobs” and then to reverse engineer my thoughts back into word streams. Social interactions require almost instantaneous conversions in both directions and although I can convert incoming word streams into thought processes reasonably quickly (providing there are no other word streams within earshot, or some other distraction) and with moderate accuracy (providing there are no other word streams within earshot, or some other distraction), reversing the process is much more difficult, not to mention exhausting.

While most of the unpublished WordPress articles start out with the intent to publish, the process of putting words to what I wish to express, exposes a “weakness” in the way I process ideas. That is I find it very difficult to put forward an argument in a way that is meaningful to those who don’t process thought in the same way as I do.

Some articles simply stop part way through, waiting for the moment where I can add flesh to the bare bones of what I have written. Sometimes, the effort of translating thought into words reveals flaws in my logic, but not necessarily providing me with a solution. These articles will sit there until either I realise the premise is not worth considering and I delete the offending article, or I find a solution and publish after considerable revision.

Most posts languish because I realise I’m unable to do the translation from thought blobs into meaningful dialogue. A bit like running an automated translator over some complex idea presented in a language that has absolutely no relationship with your own. For example here’s the previous paragraph after it was translated into another language and back into English:

Part of this information is just waiting for conversion at any time period beyond the quality of the bone with different answers. Sometimes, someone wants to understand the cut word, but does not provide a solution. In this approach, Until I understand this data, I will pull the information or find a solution after a constructive publication.

Sometimes, when I review what I have previously written, especially if it’s largely abstract, philosophical or religious in nature, it makes about as much sense as the translation above. There’s a few unpublished articles which currently are about as understandable as the example above, but a few days from now those article might make sense and others might appear as nonsense to me. What others might make of them is another matter.

Even this post, which I’ve published as a consequence of something I did a few hours weeks ago, consists mostly of content for an unpublished post about how I convert the way I translate my thought processes into English, and the fact that even though I’ve just recently turned 70, I still struggle with the process.

Perhaps my biggest issue is that language is linear – within sentences, within paragraphs, within stories. While perhaps the best communicators are those who are linear, I struggle with the whole concept of linearity. For me, there is no beginning, middle or end: there’s just a whole, (or if I’m confused about something, there’s just a hole).

Another issue is that I don’t see anything in absolute terms. This gives rise to some people interpreting what I say/write as being vague. Ashley of The Boastful Blasphemer is convinced that I’m “the most wishy-washy, waffling, non-committal, vague, imprecise, escape-hatch-leaving ‘debater’ I’ve ever talked to“. While I completely disagree with the “escape-hatch-leaving” part, there might be an element of truth in the rest. There are no absolute truths. Every fact is open to interpretation (even if we don’t realise that is what we are doing).

I have at times stated that I have no notion of time. This is probably somewhat inaccurate. I understand the notion of time – I am unable to experience time. Most people seem to remember events in terms of chronological distance. They seem to instinctively know approximately how long ago personal experiences occurred. I have absolutely no idea. I’m only able to remember the relative significance of various events. Important events are close while less important events are distant. This even applies to the present moment.

For example when experiencing a migraine, everything occurring in the “now” is distant and may be further away than events that occurred even decades ago. In such circumstances the past is more “real”, and certainly more immediate than the present. After the migraine is over, everything I experienced during the attack remains distant. A good example of this might be the first time I saw my first grandchild. I had a migraine at the time. I have absolutely no memory of the actual event. The only “memory” of the event is the description provided by my wife and daughter several years later.

This brings up another factor: With a very few exceptions, I have no visual memory of past experiences, nor can I create a visual picture of an event. For this reason, I find it difficult to distinguish between events I experience directly and those described to me by other means. The above incident with my first grandchild is one example. For a while I thought I was able to describe the incident from my own experience. Later I realised that there were discrepancies in my “recollection” that turned out to be the way I interpreted the event as described by my wife and daughter.

Here’s another example. My daughter’s home has tall picket fence at the front, about as tall as I am, nearly as old, and unpainted. Now you know as much about her front fence as I do. I probably could not identify it from a photo lineup of similar fences any better than you could with the description I’ve provided. Oh, there’s a row of trees and bushes on the property side of the fence. So if only one photo matched that description, and one of the photos was definitely a picture of my daughters fence-line, then that would be the photo I’d pick. But then knowing the facts that I’ve just provided, you would be able to do exactly the same thing. And you’ve never seen the place.

Fortunately there’s no other property in the same block that matches the description above, so finding it is not difficult. If there was a similar fence-line, I’d have to memorise a different set of parameters that made the daughter’s property uniquely identifiable.

What some of you might be able to do is create a mental image of the fence-line I’ve described. While it’s very unlikely to be an accurate image, it’s something you can “see” in your imagination. I can’t. I rely on the information I’ve specifically set out to remember. Specifically, there is a thought blob that when translated into English indicates last block in street, on left, picket fence, my height, my age, unpainted, trees behind. There is no picture associated with that description.

In the local New World supermarket milk products are located on shelving at the back left corner of the store. It is the south west corner of the store and diagonally opposite the entrance, which is at the front right, north east corner of the store. Now you know as much as I do, and if I were to place you in front of the supermarket, you could find your way to the milk section just as easily as I can. What I can’t do is describe what my eyes have seen when I visit.

This lack of visual memory can lead to potentially embarrassing moments such as the one recently described in I wonder what she wants? I learnt a long time ago to be careful of relying too much on distinguishing personal features. It’s rather embarrassing to discover the person you’ve been talking to for the last ten minutes is not who you thought she was, but a total (but friendly) stranger.

I’m not even immune from failing to immediately identifying my wife, and we’ve been together for 48 years. When we go out, I make a note of what she’s wearing. Remembering that information, along with the fact that she’s likely the shortest oldish person of Asian appearance is usually sufficient for a visual identification. While that description is reasonably reliable here in Aotearoa New Zealand where approximately one in eight people are of Asian descent (and around one in twelve in our hometown) , I discovered it wasn’t so helpful in Japan where the ratio is more like 999 in 1000 are of Asian descent, although she is still significantly shorter than average, even in Japan.

A further visual clue is her gait. It’s rather reminiscent of how a cowboy might walk after a week in the saddle. While it’s not exactly what could be described as elegant, it’s a godsend when it comes to identifying her when in this country, but again, in Japan not so much as many women of her generation, especially from farming families, walk in a similar manner

So how do I recognise people? Mostly by voice. I’ve found that to be the most reliable for me. In fact, as there are no other forms of distraction, I can usually recognise someone on the telephone faster than in a face to face situation. If I happen meet someone I know while I’m out and about, there’s a good chance I won’t recognise them unless they speak to me, and even then, the distractions of sights and sounds might be enough to delay recognition for some time. At home or in the office, there’s much less distraction, and I can usually recognise the caller before they’ve identified themselves.

As I was diagnosed as having a 90% hearing loss when I was seven years old, I wonder why I am able to recognise voices so well. But that’s a conversation for another time.

I know face blindness is more common in autistic people than is the general population, and I wonder if a lack of visual memory and thought without words or images are also more prevalent. To date I haven’t seen any discussion of this, but perhaps its something other autistics experience and haven’t realised that it’s not what most people experience.


Numbness of mind

I was seated, but I could not draw my knees together. The light was white, bright, very bright, painfully bright. Behind me there is movement but I’m unable to turn my head to see. It does not respond to my wishes. I hear soft sweet sounds that might be voices, but I can’t be sure. They are in stark contrast to the oppressive mechanical noises all around. I know I am required to lean forward, but I don’t know how I know. I start to lean forward and immediately feel a hard cold surface against my chest. I sense air movement on my back and realise my top half is not clothed. My arms are lifted and draped over the top edge of the surface. It is very uncomfortable but I know I must not move. How do I know that I wonder.

I feel rubbery fingers moving over my lower back concentrating on the spine area. Again, I sense rather than hear an urging that I must relax even if I’m uncomfortable. My head is thumping, agonizingly so, and that light hurts, even with my eyes closed tightly. I want to escape, but I am unable to do so.

A dull ache starts in the area of my lower spine, at or slightly below waist level. It grows in intensity, slowly but surely. I want it to stop but I don’t know how to say the words. I hear a groan. Is that coming from me? I’m not sure. The ache goes away, then returns, different but the same, and maybe not in exactly the same spot. I’m not sure. I sense shadows moving around me even with my eyes shut. It’s too painful to open them so I remain frozen where I am.

A sharp pain on my inner thigh, a little above the knee . A few more stab of pain, each in a slightly different area. Like I imagine a red hot poker being pushed through the skin, but there is no burning smell, only the sensation. I keep trying to find the words to tell it to stop, but the words are elusive. They tease me then disappear.

The ache on my spine disappears momentarily only to return. The ache feels different but I don’t know in what way. Is it in the same spot? Maybe, maybe not. I feel more stabs of pain, this time perhaps more like white hot needles. They are near my groin. Suddenly the white hot needles move from groin to scrotum. I realise I am no longer sitting. I am standing.

The sweet soft sounds that may be voices sound agitated. They want me to sit again but I don’t hear any words. Then a new sound – deeper and commanding. Is it another voice? Who is it directed to? I do not know. It does not matter as I don’t understand it. The ache in my spine has morphed into a pain. When did that happen? I sense pressure being applied to my shoulders, but can’t feel it. I just know it’s there. I lower myself slowly.

I realise that I’m straddling a chair backwards. My chest meets the cold hardness of its back. The pain in the spine remains and is soon joined by a return of the ache, although not as intense as before. I drift into nothingness.

I feel myself being lifted. Rubbery hands under and on my arms. Green legs on one side, blue, or maybe white on the other. Not sure. The glare is painfully bright. I cannot see their feet. Do they have feet? It seems they’re gliding. I’m half walked, half dragged then manipulated onto a bed. I think it’s a bed. I feel it rising. Then it stops. Some bars rise up beside me. I’m imprisoned. The nothingness returns.

What I describe above was not a nightmare, nor a scene from a horror movie, although I wish it was. It was very real, and every so often the memory returns to haunt me. You could be forgiven for thinking that I described an alien abduction. Looking back on it now it doesn’t seem too much different from the description of some so called abductions, but I’m yet to be convinced of the reality of such events.

Yet the experience I describe above was real.

It occurred while I was hospitalised for a week during a severe migraine attack. I have nothing more than fragmentary glimpses of that time. The actual event described, as I later learnt, was an attempt by hospital staff to obtain a sample of spinal fluid. They failed. I have no recollection of any emotional state during the episode, hence the title of this post.

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Why it’s curmudgeon day

Why the grumps? I have had two nights of fitful sleep, among other things. A little over three months ago I decided to try another regime of Migraine medication as I was finding I was down to less than 10 migraine free days each month. And even on those days I usually woke with migraine-like symptoms that would take two to three hours to pass.

My GP suggested we try Propranolol again as it has been more than 10 years since I last tried it. Unfortunately neither the doctor’s notes nor my own record why I stopped taking Propranolol all those years ago except that the side effects were unacceptable.

As many people on the autism spectrum will tell you, the effectiveness and side effects of many medications can be significantly different than would be the expected outcome for neurotypical people. In the case of migraine medication, I have found the effectiveness of most treatments have been negligible, and in every case, the negative side effects considerably outweigh any benefits gained.

This is proving to be true with Propranolol. I’m having up to 20 migraine free days each month, but the side effects are getting to me. I can put up with such minor inconveniences as feeling my body has aged 10 years in the last three months, or the return of Raynaud syndrome if it means I can halve the number of days where I can achieve little or nothing. I can even put up with the itching skin and distorted night vision at a pinch, but there are other symptoms that I’m unwilling to live with long term.

Perhaps the most unsettling side effect is a constant feeling of unease, but about what, I’m not sure. I’m also aware of having vague “memories” of events that I doubt very much happened, and I’m unable to tell if they’re recent dreams, distant dreams, hallucinations, or real events sometime in my recent or distant past. They are so fragmented and vague that they make no sense. However my “recollection” of them feels recent. When or if they happened, they don’t seem to be upsetting at the time. In fact I think some might be the opposite. But in the cold light of day, when I’m fully lucid, they make me uncomfortable, but I don’t know why.

Since starting Propranolol, I’ve found my concentration and short term memory has left me. This is a normal symptom for me during a migraine attack, but it’s worse with medication than without it, so what’s the point of taking it?

One of the less common symptoms associated with my migraines is that I sometimes suffer from depersonalisation or derealisation just before or during an attack. Sometime it can extend to dissociative amnesia. In hindsight I’m convinced that this is a much more frequent symptom during those times I have been taking preventative migraine medication.

That experience of sometimes watching myself from a distance and feeling I’m an observer and not an actor is something I seem to have more frequently since starting the medication, even when I’m not experiencing any other migraine symptom. I seem to be achieving less in my 20 migraine free days now than I was in my 10 migraine free days less than four months ago.

Propranolol is not a medication one can safely stop cold turkey. It’s time to arrange with my doctor a plan to wean myself off them.


Safe landing

When I was about ten or eleven years old, I joined into the tail end of a conversation about what humans can and cannot do. One of the older boys in the group claimed that it is impossible for humans to land on two feet and not bend the knees. He said that even if you try to keep your legs straight, you can’t as bending the knees is instinctive and you cannot override it.

A few of the kids decided to test this theory by jumping off a chair. Not one of them managed to land and keep the legs completely straight. Their knees bent to some degree, and the group decided that indeed it was impossible to land without bending the knees. I wasn’t convinced, as I observed that none of the children locked their legs straight during the descent. So I decided to demonstrate that it was possible to land without bending the knees.

There was a reason I had been dubbed the little professor. A well as being a mine of (mostly irrelevant) knowledge, I liked to experiment. I clambered onto the chair, launched myself into the air and locked my knees absolutely straight, and held that pose during the descent. And I proved it is possible to land without bending the knees.

What I didn’t prove is that you can do it safely.

I saw stars and flashing lights. I heard a roaring sound like a freight train rushing past. I felt and heard a grinding sensation in my neck. Then there was blackness. I don’t know if I actually passed out, but moments latter when the roaring, lights and darkness abated, I found myself standing upright with flashes of pain going off along my neck and spine. The boy who had made the claim, shrugged his shoulders, said “Oops I was wrong”, then turned his back on me and walked off.

It never occurred to me at the time that I might have been set up. That possibility didn’t occur to me until a decade later, by which time I had lost all contact with the group. If it was a set up, I’m grateful that they chose a chair to jump from and not the garage roof.

The first migraine attack that I remember having was  when I was around ten or eleven, although they didn’t become a regular feature of my life until I was twelve of thirteen. I wonder if there’s a connection…


What’s happening?

Before reading any further, what was your first impression of Serene Branson’s performance? High on drugs? Intoxicated? Brain damage due to previous abuse of drugs? Being possessed? Having a stroke? How would you have reacted if you had been there in person?

I ask, because it’s something I encounter regularly in my everyday life. It happens to me. While, in the case of Serene and myself, it’s none of the above circumstances, the symptoms displayed could potentially be life threatening. Most people with any medical training will tell you the likelihood that the victim is having a stroke is high and no time should be wasted in getting the victim to an emergency medical facility.

So what happened to Serene? She was experiencing a migraine aura – in this case one that affected the area of the brain that controls speech. Auras typically occur shortly before the headache phase of a migraine attack. The most common forms of aura are related to vision – blind spots, zigzag patterns, flashing lights, vision loss, seeing things that aren’t really there, but all the senses can be affected. I frequently think I hear the telephone ring or my wife calling me.

I sometimes fail to accurately estimate distance and tend to crash into objects, or miss door openings, both of which can be very painful. My senses can become heightened so that light, sound, taste, smell and touch become unpleasant or even painful. My sense of balance can fail, giving me the appearance of being drunk, and the right side of my body becomes weak or partially paralysed. In the worst cases I loose all sense of self, and have no clue of where I am and no understanding of time.

Any symptom that can present during a stroke can also present during a migraine attack. I wear a MedicAlert bracelet 24/7, as during a severe attack I am unable to communicate at all. On my doctor’s advice it does not include any of the symptoms I might present except for that fact that I can become confused and disorientated during an attack. At first I was against this, as invariably I’d end up in the emergency department at a hospital if I happened to have an attack while away from family.

I can assure you that the noise, bustle and bright lights in the emergency section of a hospital make it the last place I want to be at such a time. My thinking was that if the symptoms were listed, then I’d more likely be delivered home where I can be left in peace and quiet to recover. However, as the doctor explained, the symptoms of a stroke and severe migraine are similar, so there’s always the chance that I might be sent home when in fact I’m having a stroke. And the odds of it being a stroke increase as I get older.

Unlike a migraine, where even the worst of the symptoms are transient, strokes tend to cause permanent damage, and the sooner one receives appropriate treatment, the better the chances of recovery. So if you happen to come across an elderly, bearded, grey haired gentleman, staggering about colliding with all and sundry, and uttering pure nonsense, don’t write him off as an intoxicated social outcast, It might be me in the throws of a migraine attack. But in the off chance of it being a stroke, I would appreciate some assistance in getting to the nearest medical emergency centre. Thank you.