part III - my mistake, it wasn't the middle after all

post-hospital
(life: v2.1.0)

I was in hospital for 19 days in all, with 10 of them spent in a room of my own. But because I was now mobile, I could be released, with Abi taking care of me. However, to be my carer she couldn't work over 15 hours and/or had to earn under £140 per week to get carers allowance which, at the time, paid just under £65 per week. It's during these kind of times where you realise that the social safety net has really large holes and is purposely designed to get you falling through them.

Before leaving, I was assessed by the speech therapist.
"If you think you're having another stroke, what will you do?" she asked.
I admire her confidence that I'm due a return, I never said. "Cor am-bans", I actally said.
"That's right - call for an ambulance," she corrected.
Regardless of my lack of landguage skills, I returned to work 7 weeks after having had my stroke, undeterred.

In retrospect, my return to work was way too soon, but I was aware that was a single point of failure. Having said that, when Abi told me a few days after I returned that the company were thinking about hiring an MSP to cover my absence, which maybe would've done me out of a job, I wasn't that bothered (the firm paid statutory sick pay). However, I also was bored and needed to do something in order to break the monotony. (Looking back over this passage in 2024, it's clear that I returned to work way too soon.)

Needless to say, I worked from home, with my days punctuated by an overwhelming desire to take naps. I’d get out of bed around 08:50 and start work at 09:15. I'd have a late-morning sleep (11:00 – 12:00), a mid-afternoon sleep (15:00 – 16:00), and would be in bed no later that 21:00. I slept because of post-stroke fatigue, which is very real and much more tedious and obstinate than I like to have endured. But I was advised not to fight it, this narcolepsic tiredness, as it was part of the healing process (apparently, my brain was busy forging new neural pathways and it was getting tired). Although it gradually improved over time, fatigue still affects me.

I’d communicate with colleagues mainly by email, although Signal and the internal XMPP solution also proved useful. It was such an effort at first, and I found that I’d have to re-read long emails 3 or 4 times to fully understand them (my skim reading still not up to scratch). I recognised the words and understood their meaning, but I struggled with my internal monologue, in that I'd forget the contents of previous sentences. As time went on, the fog cleared and I once more was able to listen to the narration in my mind. You know - that voice in your head trying to convince you that you're Jesus! It took a few weeks before I felt a little more comfortable with my automatic speech and exchanging pleasantries, but engaging in a full conversation remained an issue.

As the seasons passed, my speech improved at greater pace, mostly due to my reading aloud to my children and providing a running commentary on everything I did: “I’m going to make a co-ff-ee. I’m fill-ing the kett-le… etc”. I’d also watch people’s mouths as they talked and took note which lip shape produced particular sounds. I found words in which the letter 'l' was preceded by another letter difficult, had issues making the ‘th’ sound, and found words with letter ‘r’ in the middle pretty tricky. Words like ‘thoroughly’ took a long time to get right; words like ‘scrotum’, not so much. I'd also get letters and sounds twisted, so I'd say 'bastek' instead of 'basket', 'stikkles' instead of 'skittles'. That I'd correct myself before continuing with further words, I think this is more in tune with apraxia of speech as opposed to aphasia. Whichever one it is, there is no cure, only therapy. Improvement and progress come from repetition and practise, and even being aware of the mistakes and the errors is a step forward.

Two weeks after leaving the hospital, the home physiotherapists and occupational therapists arrived. I had a 6 week rehabilitation programme. Those guys were great. Actually, everyone I came into contact with in the NHS was great! Every day for almost an hour, the OTs masterfully managed to stimulate my hand and arm, while the physiotherapists focused on gaining strength and greater movement and flexibility. Of course, as with any rehabilitation, the onus is on you. You have to keep doing the exercises. It’s repetitive and dull but it’s absolutely worth it.

About 4 weeks into the rehabilitation programme, I had a visit from a member of the Stroke Association. He asked a few questions, took my details and asked if I'd like to have additional support, before leaving further details about the organisation and what they do. Seven months later, I got a call from a Stroke Support person inviting me to attend a support group literally a 10 minute stagger from where I live. Apart from the fact that we all had something in common (stroke or TIA), I found it difficult to relate to the group, in that there was no one there of working age, and they already had had their careers, some long ago. I attended 3 sessions in all. The group disbanded before the pandemic.

Towards the end of the 6 week rehabilitation programme, during which I made pretty good progress with my right arm and hand, one of the OTs said that I might be a good candidate for a SaeboFlex and he’d like to put me forward for an assessment. By the end of August 2017 I was in Kier Hardie in Merthyr having the SaeboFlex adjusted to fit, with an exercise programme to follow at home and a fortnightly (and later a monthly) evaluation. Using the SaeboFlex the strength of my grip improved and my arm had a little more agility and flexibility to it, so much so that 8 months after my ABI I was able once more to pull open a packet of crisps. I signed myself off the programme after seemingly plateauing at 14 months, with the option to return should I feel the need to.

re-evaluate
(life: v2.1.1)

Even though my stroke struck in May 2017, I remained in employment until August 2018. My job was lost not because I had had an ABI but because of redundancy. The firm went from managing client assets in excess of £400 million to slightly over £notverymuch, and the property developments in excess of £50 million had hit problems. It was a gradual decline but an unsustainable drop nonetheless. I stayed with the firm hopeful that business would eventually improve and because there were still interesting projects to be realised.

My final project was architecting 3 colocation data centers to AWS, learning as I went, and it was all done post-ABI. The firm was going cloudy and I had already shifted a bunch of services to the troposphere, and the data centres were all that remained. I had chucked up a few servers in AWS a few years before this project so I was a little familiar with the AWS cloud stack, but nothing on this scale. I also knew that shifting to AWS meant that fewer virtual machines were needed, and as there was nothing physical to manage, I'd be left with very little to do on completion of the push. Effectively, I knew that I was doing myself out of a job, but I genuinely welcomed the opportunity to architect the solution.

Despite having support from my family, redundancy brought with it a sense of loneliness and isolation, especially after Abi had returned to work (part-time) and the kids had returned to school in early September. Nevertheless, my plan was to take a year out (from Sept 2018 to Sept 2019), a year in which I'd discover how much of an improvement I could make, if I could do more than pull open a packet of crisps. And then, in October, Abi managed to get a shared allotment. It proved to be a welcome distraction and a place where I could take my mind off any anxiety I might have had. It also became a place where I could quietly assess realistic and achievable goals.

On the run up to Christmas, I decided to pursue the AWS Solutions Architect Associate (SAA) certificate. After all, the last project I did while employed was with AWS and I wanted to pursue a cloudier career path anyway, and as I could no longer be as hands-on as I used to be, the situation I found myself in simply expedited the decision. Another reason to pursue the certification was that I needed to confirm that my brain still worked.

The silly season came and went and, shortly after, I started to doodle around the margins of studying towards the SAA certificate, which also helped in my rehabilitation in that it afforded flight from fatigue, listlessness and boredom. (I say doodle as if I wasn't serious about doing the AWS certificate, but I was genuinely keen to learn more about AWS; it's just that I knew that I wasn't yet ready for full-time (or even part-time) employment, meaning I could take my time as long as the redundancy lasted.)

Unfortunately, throughout 2018 and the beginning of 2019, my dad had been frequenting hospital with increasing regularity. Sadly and regrettably, my dad died in May 2019. Needless to say, it was a tough and very emotional time. I appreciate this sounds a bit matter-of-fact, but there was a period of two years and eight months that was extremely distressing and torrid: mum died, I had a stroke and got made redundant, and dad died. My self-confidence had been low following the stroke and it had now taken a further hit. I felt broken, almost irreparably shattered.

Around mid June '19, I hit the studies again and passed the SAA certification mid-July, with the remainder of July and most of August spent in west Wales. Then, in early September, I had a driving assessment at Rookwood Hospital. I had the pleasure of parting with £100 for this. I went out driving for around 40 minutes with an instructor. There were no major issues other than I have to now drive an automatic, with a steering knob.

A while ago, during life v1.0.0, I wanted to pursue a project management framework and toyed with the idea of doing a Prince II course but never managed to get around to do one. I also looked at Scrum but I thought, at the time, that it applied only to software development, learning eventually that Scrum can be applied to any product development. In late May '19, I met up with a couple of friends for a shandy (I wouldn't have gone if it hadn't been for a lot of persuasion from Abi and my brother, such was my lack of confidence in my ability to express myself) and the subject of Scrum was brought up in one of our discussions (we sure know how to have a good time!). The discussion manifested into an interest once more. But it wasn’t until a few months later that I began to entertain the idea of studying Scrum a bit more in depth (I was studying for the SAA certificate and other bits in life got in the way). Once I got on track, I read a few books (the Scrum Guide, Scrum Narrative and PSM Exam Guide, The Scrum Master Training Manual) and got hold of training videos. But the resources were dry and rather dull. Scrum needs people, a team with which to collaborate, in order for the framework to be applied. Nevertheless, I reflected on my past experience and realised how agile it had been. In February '20, I passed the PSMI certification. And then… pestilence.

The pestilence came. Finding employment was going to be that much harder. In retrospect, it seemed that my plan to take a year out had a design flaw, in that I did indeed take a year out. I don't suppose it really mattered, I wasn't ready for work during the year out anyway.

I wasn’t sure (and I’m still unsure) whether or not I was classed as a ‘clinically vulnerable’ person having survived a stroke (the only advice out there was “Having a stroke means you are at greater risk…” as if I’m currently having one. If the advice said “Having had a stroke means you are at greater risk…” I’d feel more assured.), so instead of adopting the 2 metre rule I adopted a 3 metre rule and became a home tutor to my children (a challenge which I relished), while simultaneously working my way to gain the AWS Developer Associate certification, after wanting a better understanding of AWS than the Architect Associate certification alone afforded. Once my children had returned to school, except for the times when the school informed Abi and I that either one of them had been near someone who had tested positive and had to self-quarantine for 14 days (my daughter got to do this once, my son twice), I began studying towards the AWS SysOps Administrator Associate, which I passed at the beginning of November.