Do You Know Where You Are?

Yes I, did know where I was. I was in the stroke ward of Addenbrooke’s Hospital in Cambridge. So that was good.

In a way.

What I did not know, and still don’t, is why…

Nine years ago, I was sitting at my computer looking at Google Maps trying to work out the route to the Sunday’s football match. My son was in a village football team and I usually drove him and often a couple of his team mates to the game. I picked up my mug of tea and noticed my arm felt dead. I didn’t trust it to carry the tea across my keyboard. I then felt a numbness in my jaw, like after a jab at the dentist. I went to the top of the stairs to call down to my wife that something was up, but couldn’t speak properly. My jaw was numb. She called 999 and a paramedic arrived in minutes. The ambulance arrived while the paramedic was still checking me over. I no time I was at the hospital being triaged and then scanned.

It seemed I’d had a Transient Ischaemic Attack (TIA) caused by a tear in one of the arteries leading to my brain. No explanation for the tear – I hadn’t jerked my neck or been in a fall. Terrifying, but after a short stay in hospital I was allowed to go home. I had a follow-up appointment with my consultant. No underlying health condition was ever found and he told me I was no more likely to have another one than anyone else. I had no permanent after effects. I was lucky.

In a way

A daily dispersible aspirin (to stop the clotting that causes the stroke if there was a repeat of the tear) and that was it. I got on with my life, pretty much.

I say ‘pretty much’ because I’d be lying if I said I never thought about that TIA or the mysterious arterial tear that caused it. It would have been easier if there had been a specific cause like kick-boxing or something that I could have never done again. But there wasn’t. The only warning I’d had nine years ago was pain in the right side of my face – around my jaw, my eye, my ear. The pain is the tear, rather than the stroke itself. So if I got any pain again, that obviously rang alarm bells. I went to my GP one time, not long after, and he sent me back to the hospital just to check. I was fine. There have been a few other niggles but I’ve tried to tune them out in the main. Years went by.

Then a few weeks ago I had another bout of pain. Other side of the face this time. It lasted a few days and it was pretty bad at one point.  I thought about seeing my GP. I thought about seeing my dentist. In the end I saw no one.

Then one night a few weeks ago I had cooked the family meal and we’d eaten and I was clearing away afterward. I got into a tangle taking my jumper off.  I set off across the kitchen and just walked heavily into the worktop and cupboards on the other side of the room. My wife called out. I felt fine but my wife and son told me I wasn’t. My son told me I would have fallen over if he hadn’t held me up. I knew what they were saying. I just didn’t want to accept I’d had a stroke. I just wanted it to be a mistake.

I still do.

Again the paramedics were at the house super fast. They tested me and I seemed fine, apart that is from a test they did on my vision. I seemed to have a blind spot on my left side.

The ambulance arrived and off we went. Triaged and then up to the stroke ward. Another consultant. More scans. More terrifying this time, for it being the second time. time. Added to which I felt like a fool for not linking the pain with another tear. I would now feel a bit responsible for whatever happened now in a way I hadn’t last time.

The first time I seemed to have no ill effects at all – or none that didn’t pass very quickly – but this time, in addition to the vision loss which stayed with me, I was hit by a wave of panic attacks and an overwhelming sense of dread. I felt like I was in a nightmare. I twitched constantly and then, at night, flailed around and cried out. I remember punching my bedside chair over and over just to feel the pain in my hand.

I lay awake going through birthdays to test myself. I could still walk. I could still speak. There were others worse off in that ward. Of course there were. There are always people worse off. It’s not the comfort it seems. Quite the opposite, mostly.

Again, all my checks indicated no underlying issues. I was released again and came home, feeling twenty years older, a bit broken. I tried to calm myself by listening to music but another effect of the stroke is that it has mangled music for me. Music I know well sounds strange. It has the echoey quality of a horror movie soundtrack and seems to have some kind of internal oscillation. It is the worst aspect, so far.

The strange other me that came home upset my wife and, maybe even more so, my son. He was a boy last time and so was shielded from the worst of it. He has no expectation of me to be a tough guy, but seeing me so dazed and anxious was hard. I moved slowly, spoke slowly and rambled incoherently before lurching into another panic attack. I could see I was freaking my family out so I pretended to watch TV while not being able to concentrate on it for more than a couple of minutes. I was constantly on the verge of tears. I was very low. Lower than I have ever been in my life.

Weeks on, the anxiety has eased. Which is a minor miracle given that I came home as the true nature of the coronavirus pandemic was being revealed. Anxiety was the new norm. It took days for me to convince myself I was not about to have another stroke every time I had a pain in my face or head. I stayed up most of the night panicking about every twinge. The laws of probability that had been a comfort after my TIA now seemed to work against me. The population as a whole may be very unlikely to have an arterial tear, but a person who has had two in nine years with no discernible cause? No – I seem to have my own private set of stats.

The after-support has been amazing. A lot of the hospital visits or appointments have become telephone conversations because of COVID-19 but hugely welcome all the same. The kindness of everyone involved has been heartwarming. I am aware of seeking a reassurance that no one can give me, but day by day, I become a little better at resisting the urge to monitor ever twinge in my body.  I no longer have panic attacks. The terrible dread and the loss of faith in the future remain, but they are not as overwhelming as they were. I still feel sorry for myself, of course. I suppose I will for quite a while yet. Maybe always.

When I was in hospital I thought a lot about whether I would still be able to draw, to paint, to write. In hospital They asked me what I did for a living and I told them I was a writer and visual artist. But I don’t do these things for a living. I do these things because it’s who I am. I’ve merely monetised them, that’s all. I’ve turned them into a job. Sometimes I wish I hadn’t. Often, in fact.

I can still do these things, thank goodness. At least in theory. I have have gradually getting back into writing but I have avoided drawing until a few days ago when I drew this cactus – just to prove I still could. It’s not much, but it’s not the worst drawing I’ve ever done.

As far as I know the blind spot in my vision is still there although There does seem improvement. If it is still there I don’t notice it. I will get tested by the ophthalmology department – but who knows when.  I was warned about the possibility of hallucinations, and was thankful not to have any. I was pretty sure they would not be benign.

I’ve edited this slightly since I posted because the previous section sounded worse and more pessimistic than it it is. I never registered my vision issue other than a sense it wasn’t right. That was one of the weird things about it. It was only when someone waggled their fingers right next to my face and I realised I couldn’t see them at all. But I don’t want to overplay it. It doesn’t hasn’t impacted on my life other than being another worry. It was hideous at the time of testing but that already seems a long, long time ago.

Music still sounds weird and I can hardly contemplate s life where that remans the case. Music is such a big part of who I am and always has been. I relax by noodling away on my guitar to various bits of music. I can’t really hear the notes properly and am playing by memory now, in the hope it will come back one day. I have to hope it will.

I spend so much time in my own head but I don’t really think about my brain. Who does?Seeing the nurse from the stroke unit draw a diagram of it, showing where the stroke impacted, was weird. That pen scribble was why music sounded like it was sliding down a well. That pen scribble could have robbed me of my memory or my speech. It’s still hard to think about that scribbled brain and the danger that lurks there.

The day after my stroke I was due to do a school visit. It was World Book Day week here in the UK and I had school visits booked in for most days. I had to cancel them all – as well as ones in the following weeks. Of course the schools closed down soon after in any case in the ensuing lockdown.

So I go on, taking each day as it comes. That’s harder than it sounds but less platitudinous than I’d have imagined a few weeks back. The melancholy, anxious world around me is like a projection, it so perfectly mirrors my own mood. It’s hard to know where my stroke recovery ends and the pandemic-induced sadness and anxiety begins.

I have never really felt truly at home in Cambridge, if I’m honest – despite the beauty of the place and the people I know and love who live here. I’m not a graduate of its university and so that institutions seems shut off to me. I’m not from here.  I have no real reason to be here and we moved here mourning the loss of our big old house in Norfolk.

But then I have never really felt at home anywhere. I suppose Cambridge has always seemed a bit exclusive. But now the shops and cafes are closed, the students and tourists are gone, the streets almost empty  and  it looks sad and scared.

And being somewhat sad and scared myself, I feel  a newfound sense of kinship with the worried souls I pass on my afternoon walks. Oddly I feel closer to strangers now we are physically farther apart. It’s almost as though in putting up our guard we are all telegraphing the vulnerability we put so much effort into hiding in normal times.