Chapter 14: A new beginning?

When I came around from an induced coma roughly 4 years ago, one of the first things that I remember becoming aware of was that Donald Trump had been declared the new POTUS.

With hindsight, that should have been a clue for me that I was now residing in an entirely different dimension to the one that I had inhabited prior to my accident.

As I write this, it appears that The Donald’s tenure may soon be over – barring any of the various last ditch attempts that he seems to be making to cling on to power – and a new chapter in American history is about to begin.

In my own life, it feels like I am possibly on the cusp of beginning a new chapter too.

Since I last held forth, my main focus has been on fully implementing the “1 planned thing” model into my daily life. Until a couple of weeks ago, I had been going to say that the results have been somewhat mixed, but in reality it was my adherence to the model that had been patchy.

Six weeks on from the start of full implementation, it is becoming increasingly clear that the model works. Certainly, there is a very strong correlation between planning to do more than 1 thing a day and putting myself beyond my limits. Life is much better lived in the slow lane, it seems.

So this period, the dog hasn’t been walked every day, the house hasn’t been vacuumed as often and I haven’t been creating as many reasons to get out on my bike – and no one seems to have come to any harm as a result.

Previously, I would have pushed myself to do 2 out of these 3 activities before lunchtime each day. I now realise that this was putting me into the red zone, leaving me hanging on in the afternoon trying to conserve my resources until it was time to make dinner.

By restricting myself to only planning to do 1 of these activities before lunchtime, I am consistently finding that I have more left in the tank after my post-lunch nap. This means that come dinner time, I am more likely to be able to actively participate in conversation with my family. I have even managed to add a couple of new dishes to my otherwise tired culinary repertoire that has relied on the same 3-4 recipes for the last 2 years.

The eagle-eyed amongst you might be inclined to observe that all I have really done here is be more disciplined in sticking to the rules – in particular, Rule 1 (Only fight the bear when you have to) – and you’d be right, of course.

So what’s the difference this time round? Have I finally served my bear fighter apprenticeship and graduated to the next level?

As I was putting the finishing touches to Chapter 12 on my return from holiday in the Lake District, I received my Provisional Disability Assessment Driving Licence in the post from the DVLA. They had eventually decided that they would give me a shot at proving (or disproving) my capabilities behind the wheel.

It would be fair to say that my family was less than thrilled by this development. I was swiftly advised by each of them in turn that they would never be travelling in a vehicle in which I was the driver.

On the one hand, this was quite a knock back – to inspire such little belief in those you care about the most. On the flip side, it made me all the more determined to prove them wrong – giving me an extra incentive to keep myself out of fatigue by adhering to the “1 planned thing” model.

From my own perspective, I regarded it as something of a “free hit” – if it worked then great, if not then I could let it go and move on. Riding my bike had certainly helped give me the confidence that I still have good road sense – enough to believe that I had a decent shot.

My first time back out on the road was with a driving instructor in a dual-control vehicle. All things considered, it went pretty well. As predicted by my occupational therapist, my instincts kicked in and it was like I’d never been away. I managed to drive for over an hour, only experiencing some minor signs of cognitive fatigue in the last 10 minutes.

For comparison, whilst it wasn’t on the same level as cycling – which leaves me feeling more switched on – it was nowhere near as fatiguing as walking the dog, vacuuming, making the dinner or even just playing poker. More like the same feeling as emptying the dishwasher or peeling carrots, but after an hour rather than 3 minutes.

Now that I am armed with a much better understanding of my condition, it is clear to me why this is the case – and why my occupational therapist was always confident that it would be.

In short, I struggle with making decisions where there is no clear right answer. With driving, that is very rarely the case. You don’t come up to a roundabout and ponder which way to go round it – you follow the rules of the road. Furthermore, information processing is limited pretty much exclusively to visual stimuli – there are no long, complicated verbal / written explanations to understand and determine how to act upon.

Nevertheless, my family remained highly sceptical. It’s one thing driving a car when my brain is not fatigued – I had rested up for several days in advance to give myself the best possible opportunity – but what about in other, more real-world scenarios?

My second lesson came towards the end of an unexpectedly busy week. I considered cancelling, but left it too late. So, I cleared my diary for the day and rested up until it was time to go out. Although I started off in a more fatigued state than the first time, despite driving for almost an hour and a half, my cognitive function did not deteriorate materially – certainly not to the point where I felt I might be a danger on the road. The driving instructor was actually fairly complimentary – having perhaps been initially terrified by the expectations I had set!

By the time my assessment came around last week, I had been out 5 times with an instructor for a total of 7.5 hours. In the end, while I was still operating within the safe environment of a dual-control vehicle, I had taken the opportunity to test myself under a variety of different scenarios in terms of what I had done in the lead up to each lesson – and hence my cognitive state coming into it. Never anything silly or reckless – always taking time to rest up beforehand on the day – but something approximating to the situations in which I was likely to find myself should I be given my license back.

Whilst I was feeling pretty good about my chances, I knew it would come down to how well I managed my cognitive fatigue on the day.

Having rested up in the morning – and avoided the temptation to take the dog out for a walk – I set out on my bike just after 11am to cover the 13 mile journey to the assessment centre. The centre was at a satellite venue rather than a main hub, based next door to a cafe run to help people with disabilities get into the working environment. As I was served my lunch by a young man with Down’s syndrome, I noticed one of the customers moving back from his table in his wheelchair to reveal that he was missing both legs – a timely reminder for me as to how lucky I was to have this opportunity in front of me now.

The assessment was scheduled to take place at 1pm – right when I would normally be settling down for my nap – but because I had rested up and then used the cognitive recharge effect of riding my bike, I was feeling ok.

The assessment itself comprised an initial discussion, lasting around 45 minutes – the bit that I was most concerned about due to the potential for fatigue – followed by 45 minutes of driving. Thankfully, the discussion component revolved entirely around me talking about myself and my condition – in which I am the world’s expert – so I was able to deploy full monologuing mode, experiencing minimal fatigue as a result. The driving component went pretty much as expected – my only real challenge coming when I was asked to find a car parking space at a local supermarket and dithered over which one to go for.

The final results are not yet in, but the assessors indicated that they would be recommending that I be given my license back – so fingers crossed! Or perhaps that is what they would say to someone they perceived to be a mad man who they wanted to get away from? We’ll just have to wait and see, I guess …

Regardless of the final outcome, I am happy that I took on this challenge, despite the protestations of my family and several close friends. If nothing else, it has given me an increased sense of self-worth. The potential to open up new opportunities in life – plus my desire to prove to my family that I am a safe driver – has given me yet further motivation to stay out of fatigue.

In fairness, those who have expressed doubts over my capacity to drive have all seen me at my worst, when there is no doubt that I would not be fit to get behind the wheel.

By way of example, after the end of the last lockdown we went on a weekend trip to see my mother-in-law. I managed to exhaust myself with the planning and decision making involved in getting ready to leave, despite trying to stay out of preparations. There is no way I would have been fit to drive.

An hour into the journey, after waking from a short nap, I now know from experience that I would have been completely capable. Even if that is all I am capable of – to be able to share the driving duties and give my wife a break on long journeys – then it will be a capability worth having.

In any event, I would expect that driving will always have to fit into the “1 planned thing” model, along with everything else. This is my way of managing my condition to ensure that I only drive when it is safe to do so – like anyone else with a medical condition that could hamper their ability to drive has to (e.g. a diabetic managing their blood sugar levels).

In my case, realistically that probably means never using driving as a way of getting somewhere to then do something (e.g. attend an appointment, meet a friend, go shopping) – unless, perhaps, there is an opportunity to take a significant rest before attempting the return journey.

This whole episode has also made me realise that I need to be more diligent in managing my fatigue generally – not just so that I could drive when required – so that I can achieve a better balance in my life.

In the final analysis, I have come to understand that “belonging” is like being marooned on a desert island. Once you realise that no one is coming to save you, you stop devoting all your resources to getting off the island. It’s only then that you look up and start to see that, by accepting your new home for what it is and making the appropriate adaptations to your way of life, perhaps it isn’t such a bad place to live after all.