Footsteps On My Mind

I’m not a person who feels down if things don’t go as intended. Melancholy is doesn’t seem to be part of my DNA. About the only time I feel “out of sorts” is during a prolonged migraine episodes when it feels like my “get up and go” has “got up and gone”.

Although I don’t consider I have reached my “twilight” years, I’m definitely in my “late afternoon” years. Despite being a chronic migraine sufferer, and living for sixty years not knowing I was autistic, but feeling like I was a square peg being forced through a round hole I view my life as being a wonderful experience. I can’t imagine an alternative life being any better.

Mostly, I recall the good things that have happened in my life, and whether or not it’s good to do so, I tend to sweep memories of negative experiences under the carpet. One reason for this state of affairs is due to having alexithymia, often referred to as “emotional blindness”. I suck at reading the emotions of others, but I’m even worse at reading my own. I know happiness and contentment are pleasurable experiences and I know deep sadness is is not. Most others I’m oblivious to, and it’s only since discovering I am autistic have I learnt to recognise some emotions by carefully thinking about the physical manifestations that frequently accompany emotions.

If it feels like my blood is about to bool it means I’m angry (or wearing to many clothes or in the early stage of another migraine). If I feel a churning motion in my stomach, it means I’m nervous (or some food has disagreed with me or Im hungry or I’m in the early stage of another migraine attack). If my face feels hot, it means I’m embarrassed (or I need to remove a layer of clothing or I’m in the early stage of another migraine attack). If I find my hands or jaw is clenched then I’m most likely very stressed out (or I could be in a state of rising anger or I’m in the early stage of another migraine attack). If people ask me to repeat something I’ve said then it might be because I feel down and am talking too quietly (or I’m in the early stage of another migraine attack and I’m slurring my speech, or we could be in a noisy environment). And so the list goes on.

Learning to recognise emotions this way is quite confusing. For example, If I feel my eyes start to water (and there’s no irritant present) does it mean I’m happy, or sad, or both or something else? If I feel a lump in my throat is this really nostalgia tinged with sadness? What else can it mean? And is it something else if I experience both the lump and the water? I really have no idea.

Over recent weeks I’ve been having moments where I recall my thoughts from my teen years many decades ago when I was beginning to understand that I was in some way different from everyone else and very different from my peers. I don’t recall having any feelings one way or the other as it dawned on me that everyone had a group of friends and I had none; that others seemed to revel in loud and noisy events where everyone talked very loudly, but I was unable to make out a single word and I’d be physically ill within five minutes of arriving; That I had no clue about the topics fellow teenagers were talking about and none of them seemed interested in why the Ab class locomotive was so ubiquitous in NZ or the nature of black holes or what technology driverless cars might employ in the future.

While I was very comfortable in my own company, I realised that having conversations with myself was not very profitable. I don’t recall feeling sad or angry or disappointed about my situation. I simply accepted that that was the way it was. But now when I look back at those moments when I began to realise that I was in some way very different from everyone else and would never fit into their world, I do feel a discomfort somewhere just below my diaphram. I’m not able to distinguish between mild indigestion and hunger, and I rarely have either sensation, but this sensation is something like that. If I’m sitting or lying I have to get up and do something, but I have no idea what or why.

I’m guessing the flashbacks and the uneasy feeling are associated but how and why? I’m confident I understand my teen self better now than I did back then. So are the sensations due to a reliving of emotions of the past that I wasn’t aware of at the time, or are they new emotions created out of hindsight and in the full knowledge of what was to come. Either way, what does this sensation represent? Regret? nostalgia? Sadness? Disappointment? Loss? Something else? I’m assuming it’s negative because it’s unpleasant.

I doubt very much that it’s happiness due to knowing how my life has turned out. For the most part I think I’ve been blessed: a best friend companion and lover for almost 50 years; two wonderful children and three amazing grandkids. What more could I desire? While there’s always a possibility that the discomfort and the flashbacks are unrelated and purely coincidental, I don’t think so. And that’s because after hearing a particular song this morning, the hunger or indigestion was much stronger and still lingers.

Popular songs have always been about the hopes and disappointments of romance, but scattered among them are a few that deal with the hopes, dreams and disappointments of every aspect of life. I find song lyrics fascinating because it is often very difficult to know what a song is really about. The song I heard this morning was one of my favourites at round the time I left school or perhaps shortly after and was about the time I realised that I was not a typical teenager by any stretch of the imagination and never would be.

As I listened to the track, I suddenly felt the discomfort rise as these words were sung:

People all around, they never seem to notice me
Maybe because my mind's behind a cloud that no-one sees the wood for trees
What's wrong with me?

Did those words speak to me then but I didn’t realise it, or are those words speaking to me now reminding me how much my life would have been different if I was not autistic? I don’t know. What I am sure of is that I’m unlikely to get a good night’s sleep thinking about it. Bugger emotions! (Is that frustration, irritation, anger, regret or something else?) They’re so confusing. It’s at moments like these that I wish I hadn’t had any mindfulness training, and I’d remain blissfully unaware of the connection between emotions and bodily sensations.

For anyone interested in hearing the source of my discomfort, here it is. I was into psychedelic music at that time which is why I might have found this piece attractive Perhaps all I’m feeling is nothing more than nostalgia for a music era that no longer exists. Oh I give up!.

Music Convention – Footsteps On My Mind

Freedom!!

Not that I’m looking forward to it.

COVID-19 has been eliminated in Aotearoa New Zealand.

In less than half an hour, COVID-19 restrictions will be lifted as we drop to Alert Level 1. Apart from our borders remaining tightly closed we’ll be back to pre-COVID conditions. We’ll be able to cram ourselves by the thousands into every type of venue imaginable and we can shake hands, hug and hongi to our heart’s contents with loved ones and total strangers if we are so inclined. I’m not.

One characteristic that I and many other ausistics have is an aversion to large gatherings, physical contact with other people and the need for greater personal space than many neurotypical people find acceptable.

I’ve never felt more comfortable around other people that I have during the past 70 days of the various COVID-19 alert levels. All alert levels have mandated a 2 metre spacing between people if they didn’t belong to the same social bubble.

I’m going to try to maintain at least one metre of social distancing. I find that anything less than that raises my level of discomfort. While I don’t think many people will think it odd to begin with, I wonder how long it will be before my minimum social spacing is deemed unacceptable by the community.

I’ve really enjoyed the occasional coffee and cake in a local eatery over the past month as the nearest person would be seated two metres away, and all food was delivered to the table instead of me having to dance around other patrons all trying to grab items from the display cabinets. What I have I to look forward to?

However, I appreciate I’m an exception and just about everyone else is looking forward to join the throngs and crowds, and get up close and personal to friends and strangers alike. I’m pleased for you.

But please be a little understanding if I take a step back when you take a step forward.

Three days lost

There are two conditions that conspire to make my life difficult at times. One is considered a mental disorder by the medical profession although I hope that in time this attitude will change. Once homosexuality was considered a disorder by the medical profession, and when I was a child, left handedness was certainly treated as punishable condition.

How times have changed. Today we understand that what is considered “normal” is in many cases, just the bulge in a bell curve of human variability, and one doesn’t need to be “cured” if one tends to be at either end of the curve.

Of course I’m referring to autism. While autism has its challenges, most of those challenges are because of the way other people, in other words “society”, respond to how I exhibit aspects of autism. While I think autism awareness is ideal in theory, I’m afraid that awareness isn’t accompanied by understanding. In Western culture, it seems that it’s being demonised as an epidemic; something that needs to eradicated, even to the point where the desire to  eradicate the person with autism is seen as understandable, although thankfully not condoned. This must change.

The other condition, and the one that has had the most effect on me over the last few days, is considered a disorder, by the medical profession, and with which I heartily concur, is migraine. Having been laid low by a particularly painful attack that has kept me in a darkened room for three days, unable to eat, think rationally or coherent thoughts, I would like nothing better than for science to find a cure, or even to reduce the severity, frequency and duration of attacks. Looking at the Migraine Buddy app on my phone, I see the following statistics for the last 31 days:

No. of attacks:	14
Average attack duration:	32 hrs 25 mins
Attack days:	27
Attack-free days:	4
Pain Intensity (1 – 10 scale)	Minimum: 3 Average: 6.3 Maximum: 9

The three most common symptoms (apart from pain) are sensitivity to light and noise, and Tinnitus. These occurred in every attack. However following symptoms occurred in at least half of attacks: Aphasia, giddiness, sensitivity to smells, fatigue, blurred vision, blind spots, ataxia, and confusion, with nausea occurring in only six of the attacks. Distorted spatial awareness, hemiparesis, tremors, dysarthria, and facial numbness occurred in five attacks. There are a few other less common symptoms, but I think the list is long enough as it is.

While the frequency and duration of attacks are a little up on a normal month, it’s not by much. Migraines do limit what I can do and it means that I’m not able to make definite plans. Everything depends on my condition at the time. It means that I’m often seen as “unreliable” because I can’t commit to being at a particular place at a particular time.

Even blogging has to go by the wayside during a migraine, as I’m unable to string a coherent paragraph together, and I’m unable to perform even the basics of proof reading during many attacks.

Currently I’m in the postdrome phase of the last migraine. This means that although the throbbing head pain is gone, it still feels like I’ve been hit by a bus, and I’m not sure how coherent my writing is. The postdrome phase can take as long as a day, sometimes longer,  to finally fade away, but at least, that little guy with the sledgehammer who has been so busy inside my skull for the last 3 days has gone for now. For that I’m extremely grateful.