part IV - the end (almost)

life really is a habit hard to break
(life: v2.2.0)

Cognitively, I'm back, and have been for a while. My thought-chamber still works, as indicated by my gaining various certifications; the brain chatter and internal monologue returned long ago, and both my short-term and long-term memory returned, erm, goodness knows when ;-). But it's fair to say that these various certifications also hold a different function. As I already said, since redundancy, and over the pandemic, while Abi has been in work and the children in school, and I'm not doing strength gaining physiotherapy, I find that I feel a little lost to solitude. But studying towards the certs has helped abate that sense of isolation, as well as becoming as much a welcoming distraction as a terrific confidence booster. Moreover, as I am always keen and eager to learn and develop both personally and professionally, learning more about cloudy stuff and earning the certs seems to lift my spirits and morale. But I also think that the sense of isolation is, sadly, further exacerbated by my tendency to sabotage job applications, often by retracting the application altogether, or cancelling interviews, or I'll no longer consider putting myself forward for a role because there'll be one or two bullet points in the job description that don't quite fit my skillset. It's likely to be lack of confidence on my part, the fear of the unknown. I do not do this with all applications, but there is a noticeable pattern.

Although I had very little speech therapy while I was in hospital, and none at all when I had returned home, my language skills have improved immeasurably. (Apparently there’s a shortage of speech therapists and even though I was meant to be assigned one post-hospital I was informed by my OT that one of the speech therapists was on maternity leave while the other one was not working due to stress, highlighting the absurdity of having two speech therapists to cover a rather large area.) I have to speak a little slower these days, like someone from, say, planet ‘Gary Barlow’. I have learned that my language skills are worse when I try to speak at the pace I used to, so slowing down my speech is now key, otherwise I'll slur and stutter my way through what ever it is that I want to say. I suppose this is an echo of dysarthria or apraxia, as I used to speak quite quickly pre-stroke. It wasn't panic or anxiety, it was just that I had wanted to get whatever it was I wanted to say out there as quick as possible and move on. But these days, I can't do that, so my speech is more deliberate, albeit slightly frustrating.

Admittedly, there are words which I still find difficult, so my language skills are not as good as they were pre-stroke. For instance, as I write this I’m aware that I have difficulty saying ‘negligible’, but the word ‘eligible’ seems ok (I've highlighted the letters as an example of the 'l' being preceded by another letter mentioned earlier). If I repeat the word ‘negligible’ five times every half-hour for the next day or two, I’ll more than likely nail it, meaning that the difficulty I have in saying such words is temporary. Also, if a word is made up of a lot of syllables, I have to mentally compose myself before I say the word, or I’ll find a substitute word. I think the delay when I do this is more noticeable to me as opposed to others. I'll also over-emphasise certain syllables, so something like the word 'certificate' sounds more like cerrrr-tifff-i-cate. But being allowed to have that bit more time to navigate my thoughts, to be heard without being interrupted and not having someone trying to second guess the message I'm trying to convey, because the second guess is often wrong, is vitally important. Overall, I think the scuffle that I am involved in with aphasia is still ongoing, and although I still find speaking exhausting, it seems to be a less threatening opponent these days.

My right arm still feels heavier than my left arm but not nearly as much as it used to feel. I said earlier that the heaviness felt like I was carrying 10 kilos. At the moment it feels like it has on-boarded about a 3 or 4 of kilos. It’s also not as flexible nor as agile as my left arm, in that its movement is jerky, abrupt and choppy. Depending on the exertion or endeavour, I can experience the immense pain brought on by shoulder subluxation. This has happened a few times: once when I stupidly tried to ascertain how far across my lower back I could get with my arm, twice when yawning and stretching only to find my right arm trapped between the canvas and arm of a patio chair (yep, this actually happened - I seem to be devoid of spatial awareness where my arm is concerned, and there is never a day where I don't catch it on a door handle when entering or exiting a room), and twice in the summer of 2018 while trying kayaking again. The kayak is a tandem with space for a small third. Abi was with me and she did the paddling. When I did try a few paddles shoulder subluxation kicked in, which put a stop to it. Around a month later, I tried kayaking again (again with Abi) and the same thing happened. These days I'm more of a passenger, moving my paddle enough to lightly skim the water's surface as a way to build up enough movement and strength to eventually do more. Having said that, overhead exercises such as shoulder presses and overhead extensions are a no, just no.

In terms of my right hand, I did a DASH test with physiotherapists when I was referred to Kier Hardie in Merthyr in '17 and did another test 14 months later just before I signed myself off (with the option of returning should I feel the need to). The last test showed an improvement from 34% to 22% (less is better). (A reduction in “disability”! Yay me!) It sounds great, doesn’t it? But all is not as it seems. The truth of the DASH test stats means that I can with my forefinger and thumb on my right hand pick up blocks that are 3cm³ as opposed to 4cm³, and solid yet light cylinders that are 3cm in diameter as opposed to 4cm in diameter.

I’m not taking anything away from the physios and OTs work and results as it’s an obvious improvement, and it was their sorcery and magic that helped to walk and move my arm in the first place, but as a realist I recognise that I still have limited hand functionality. My fingers do not move independently from one another and I have tendency to grab things in a rudimentary way using the most simple grip, so much so that I do not trust my right hand to hold breakable items such as plates or glasses. When I try to carry plates, I find that I cannot maintain a flat palm for long. My fingers don't seem to relax and I end up bunching them, forming a fist with a tightening grip, meaning that what I’m carrying is no longer being carried. I also find that I involuntarily squeeze too hard when I’m holding flimsy things. For example, if I'm eating a pot noodle type thing I’ll slowly but surely start squeezing the pot until my left hand steps in to relieve my right hand. It's like it tenses from muscle tightness. It’s an unintentional crushing, and releasing my grip requires effort and concentration, too. In a weird contrast to this crushing, I've got clonus, meaning my hand shakes uncontrollably when I reach out to do something. It takes a little while to get it to stop and it usually involves repeating whatever movement it was that started it but doing it much slower. But at least I can pull open a packet of crisps!

My hand has also got increased sensitivity. Anything that can dig into my hand hurts more than it did pre-stroke. For example, when I tuck my fingers of my right hand into the lip around a washing basket's edge using my left hand to manipulate the fingers of my right hand, the edge digs into my hand and it stings, and I often stop and drop it. Deciphering what is hot and cold using my affected hand/arm is also quite interesting, as neither register until one temperature starts to burn. (I was told by my OTs never to test a shower's temperature with my right hand.) Additionally, I've got atrophy in my right hand, which is more noticeable between my thumb and index finger but visible in the hand in general, and it is also at quite a peculiar angle. When both my arms are outstretched in front of me with palms down and I start drawing them in close to my torso, whereas my left hand will remain palm down, my right hand will turn at a 45 degree angle clockwise. All in all, I’m missing the intricate movements, the finer movements. Writing and typing with my right hand are both out at this point in time, and I can’t drum my fingers with it. Yet.

Trying to do things that require the dexterity of both hands often leaves me feel frustrated, which, in turn, exaggerates and amplifies the feeling of disheartenment and a sense of hopelessness. For example, lifting a casserole dish, ironing, folding clothes, lifting weighty boxes, hammering a nail, things that require two properly functioning hands - all noes. Even doing the simple task of emptying the dishwasher, I'll regularly curse (often "for f**k's sake") on discovering that I need to move small plates out from the cupboard in order to properly stack the bigger plate I've already taken from the appliance with my unaffected hand. It's a small thing, but it's a task made more difficult because of the lack of functionality in my right hand. In a nutshell, as I cannot move small plates with my affected hand, I have to return the big plate to the dishwasher, remove the small plates from the cupboard, then stack the big plates before reintroducing the small plates, all with my unaffected hand. If I had two properly functioning hands, I'd be able to lift the small plates with one hand and stack the bigger plate with the other at the same time. Ultimately, it takes a lot longer than it should. And it's not as if it doesn't take me by surprise, either - you'd think I'd learn by now. Still, crisps, eh?! At least I can pull open a packet of crisps! All is well.

My leg? I’m glad you asked. Well, I no longer have any spasticity – that, I’m chuffed to say, was fixed while in hospital. But when I walk I admittedly feel ever-so-slightly imbalanced. I also have neuropathic pain or peripheral neuropathy, which is largely apparent in my right leg and foot than it is in the rest of my right side. It’s a numb prickly sensation, like my leg has been placed in a bucket of nettles, like chronic pins and needles. Sometimes it feels like having an electric current running through my leg. It can also get worse anytime (when I'm sitting still and even when I'm walking and moving, it doesn't matter) and it does so a few times most days. Amid these moments, it’s as if the electric current has been turned up to a Spinal Tap 11, and I’m unable to move my right leg for what feels like around 10 minutes or so.

forward
(life: v2.2.x)

Going forward, as they in current jargon, there are times when I have doubts and think that I’ve plateaued and have reached the limit of recovery. But there are also signs that show the contrary. The improvements I'm making are small increments. While these small increments might be insignificant and imperceptible to other people, they absolutely are there. And they mean so much to me. They're achievements, however small they seem to be, and I remain encouraged. For example, I sometimes can pickup dominoes (3.5cm x 2cm x 0.4cm) with my forefinger and thumb. Sometimes I can pick them up straight away, other times it takes a many attempts or I cannot pick them up at all. But it's progress, of sorts - and that's a positive!

It’s fair to say that all of this has been a rollercoaster of a ride so far, one which has brought forth juxtapositions of emotions: anxiety, boredom, distress, frustration, impatience readily playing against laughter, hope, optimism, promise, aspiration, eagerness. But the brain is wonderfully agile and it can seemingly deal with most emotional traps. Further still, all this stuff, all the learning of new skills (AWS, Azure, OCI, PSM) and relearning old skills (walking, talking) can be cwtched firmly in the welcoming arms of its plasticity, or neuroplasticity. And yet I don’t think that you can learn how to "do" neuroplasticity. Rather, it’s a process, a long process, a learning or a relearning how to learn and keeping the brain engaged. From my experience, it’s been mostly about having the courage to relearn things often through repetition and practise, and having the determination to learn new things through sustained effort and stimulation. Ultimately, for me at least, it's been about mending an otherwise broken brain and being committed to approving the unexpected opportunity to engage in the attainment of enhanced competencies. And I think I’ve done pretty well… so far.