Glitching

Posted Mon 25th Mar 2024 at 15:54
by Ade Reynolds

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Tales from the world of Tourette's…….swearing intentional

Sensory overload and disorientation might be the most difficult aspect of Tourette’s to fully explain. How much is due to Tourette’s, comorbidities or other factors, I also don’t know. I often say I’m struggling to see and navigate the world, yet there’s nothing wrong with my eyes. Doctors unfamiliar with Tourette’s tend to investigate overall health, blood pressure, take an ECG or even look at ear and balance issues. All of these investigations show nothing wrong and I’m left trying to explain the abstract feeling of a failure in brain processing.

Think of your view of the world each day like a video you’re watching. A constant stream, maybe Ultra HD if you’re particularly lucky. The reality is millions of snapshots and our brain smoothing it out into constant vision. So any issues in processing that information and suddenly the healthiest eyes can be of little use when it comes to seeing. I don’t know whether to call it sensory overload, disorientation, dizziness, or just glitching. That smooth vision becomes more like a flick book of still images. It’s like your brain is buffering and your senses fight as they figure out what to do with increasingly confused information. 

I’ve spoken to a lot of people with Tourette’s who have experienced some degree of disorientation, but it seems extremely varied and who really knows how others are processing (or failing to process) the world. Looking back, it was something that could hit me at any time but it wasn’t the norm. Sometimes on a crowded street suddenly the rapid movement, the noise, the lights would all become too much. I would get light headed, struggle to see and have to find somewhere to escape and sit down.

There didn’t seem to be any obvious link with stress or anxiety. For every time the sensory overload occurred, there were other times in more stressful situations that I was completely fine. I live in a busy city, I’ve run marathons, talked to crowds, recorded TV shows and live radio, all without feeling that sense of total disorientation and inability to process information. If anything, anxiety has been built up from not knowing when it will happen. Several times it has hit me in the middle of nights out and however the evening was going before that, you just want to escape and get home. It’s a struggle to hear people, to focus and still stand vaguely normally and engage.

People carry on talking but the voices are now coming from a distance, sometimes as if you’re trying to hear them underwater. In a busy setting all the voices begin to merge and there’s a dozen different conversations pulling you in all directions while you try to grasp hold of any single word for stability. Yet all that can be going on and to others you’re just someone leaning against the wall looking handsome and having another tedious conversation about work. Sometimes the paranoia that everyone can tell adds discomfort, but other times it is too noticeable for people not to comment and check you’re alright.

Dinner tables with large groups often proved difficult with different conversations left and right. I recall one restaurant where I just sat confused and feeling increasingly unwell from failing to distinguish what anyone was saying. The different conversations merged into chaotic noise and I sat there looking whiter and whiter, saying nothing. Eventually I got up to go to the toilet, pretending everything was normal and abruptly collapsed in the bathroom. Something as simple as making sure you’re at the end of a table can make a big difference, but the extra level of thought needed and difficulty explaining it can be draining. It ultimately just lessens your engagement, you’re not really present and rarely find the energy to actually be yourself.

It’s probably quite fitting if this blog is an incomprehensible mess. It’s difficult enough to explain the urge to tic let alone your entire brain processing. I’ve no idea when I first experienced it, but I don’t have much memory of sensory overload before adult life. Maybe younger brains being wired for flexibility and learning just aren’t as susceptible to it. I do remember a particular bad period around ten years ago. Following a lot of time working alone at home quite isolated, the Tourette’s worsened as did my ability to be outside. I’d feel so dizzy when out, I just stopped enjoying doing anything. Eventually I began going to a busy shopping centre most days and just walking around trying to get used to it. Thankfully it worked and within a couple of months I was busy socialising and leading a busy life without any issues.

The noticeable point of decline seemed to be the pandemic. I imagine this was both having COVID and struggling with the recovery, and the extended time at home away from people. Like many, the change of pace at that time was quite welcome with regularly working life often leading to burnout. After having COVID the first time, I found it difficult to regain fitness, with circulation issues and exhaustion like I’d never felt before. Over time I began to go out and try to return to normal, but dizzy spells would hit me regularly. The feeling I recognized from occasional sensory overload now felt like it was always lurking in the background.

Supermarkets in particular became extremely difficult to navigate. I had struggled at times in the past, but now it was nearly every visit and that continues to this day. The lighting, the number of items, the different colours, it just seems to have a near hypnotic effect. I’m sure everyone has been in a supermarket while quite drunk before and that must be how I appear. And not the overconfident efficient shopping drunk. Whether stumbly, confused or twitchy, security guards definitely seem to notice me. Even going to the same shop regularly doesn’t seem to help. I would regularly find myself in the local Sainsbury’s, not remotely anxious, the shop not at all busy, yet I couldn’t process the environment. I could focus in one individual items at the expense of a lot of energy and peripheral vision. Most the time I’d successfully leave the shop without falling over and with half the items I’d needed. Several times I did just sit on the floor until I felt able to get up. I’ve definitely learnt that there’s no end to the number of places in London you can spontaneously sit on the floor without anyone daring to talk to you.

It’s always been an odd contrast to live half a life where no one really sees the Tourette’s and another half where it’s extremely present. The sensory overload just adds to that contrast. I can be with people and seem fine, walk away and suddenly struggle to see and walk. The inconsistency of it makes it nearly impossible for people to understand based on what they see. Particularly as I just won’t see most people when I’m really struggling. As with other aspects of Tourette’s, there some positives in being able to get through parts of life with no one noticing, but that can also leave you feeling alone with it.

This year started spectacularly with accidental withdrawal from a medication I didn’t even want to try (basically to tick it off on the way towards ADHD treatment). I started getting electric shocks through my brain, heightened whenever I moved my eyes around. Not surprisingly, this added to the disorientation and balance issues. It hit me while walking to the cinema and suddenly feeling like I’d dropped off a cliff. Not one to waste a ticket, I did still make it there on time. At this point I offer some important wisdom. If your senses overload and your brain is glitching, do not go and see Miyazaki’s The Boy and Heron. A mushroom trip of a film at the best of times. I did not need to deal with supernatural swarms of toads and a man-heron leading me into a magical realm. Although I still preferred it to Oppenheimer.

I can’t pretend the last few months haven’t been difficult. I keep trying to push myself and hope exposure to the world will help my brain return to normal (or my normal) again soon. It can be scary, particularly when you find yourself totally forgetting how to cross roads, staring left and right with distance, lights and movement all momentarily foreign concepts. Overall. I’m grateful for the days I can do things without too much thought. It will improve but it’s another area of Tourette’s and no doubt some other conditions that just isn’t understood enough. All we can do is share our own experience of the world. I can’t imagine how many different perspectives and experiences people are having internally, even as we do the same things. To me, that just makes the world more captivating.

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