After enduring an increasingly dull CRM conference in central London, my colleague and I decided to skip the concluding question-and-answer session and make our separate ways into the city. I got hold of my dear friend Tom, and we agreed to meet outside Tottenham Court Road tube station before heading off east to meet up with some more nice folk. I stood under the covered entrance to the Dominion theatre where we had agreed to meet, smoking a cigarette and killing a few minutes until our agreed meeting time. It was wonderful to be back in the hustle and bustle of the city I call home. I remember savouring the noise, the smells, the drizzle.
When Tom appeared, we rounded the corner to the first bus stop in New Oxford Street, and pratted around with the ticket machine before stepping back to wait for the right bus. “So,” said Tom, for we had not had a proper catch-up in a long while, “what’s this I’ve been hearing about you having seizures?” With spectacular comic timing, and part-way through a word in my reply, it happened again.
I remember almost nothing about it, of course, but Tom recalls that I began to stutter as I lost consciousness. At first, he admits, he thought I was taking the piss, but alarm bells began to ring when my whole body went stiff as a board and fell. My descent was broken, in part, by my rucksack containing my MacBook Pro, but I must have hit the back of my head on the pavement. Tom compares my loss of consciousness to a crashing computer, and recalls that my body went into a strange state of overdrive – every muscle had tensed up, I was getting hot and breaking into a sweat, and I was also bleeding from the head. I can only imagine the scene as I lay on the pavement during a cold and drizzly evening rush-hour in the very centre of the city.
By the time my brain had rebooted I was already in A&E, only this time at the shiny new University College Hospital. There was a very different feel to this place – straight away it was clear that, as I was alive, there was a sense of urgency associated with getting me back out to clear space for whatever was to come in next. Tom was still with me, looking concerned. As usual, now conscious again, I got my act together very quickly – in no time at all I was pratting around and being entirely inappropriate. The hospital staff’s keenness to get shot of me was matched by my enthusiasm to get out – I really didn’t fancy another nine hours of having the same conversations and receiving the same tests only for them to come up with nothing.
As I snapped back into my normal, recognisable self, the shock began to release its grip on Tom, who was becoming increasingly uncomfortable. He was recounting the events of the last hour, and the unpleasantness of the experience to which I had subjected him was becoming clear. The “nice” thing, in a way, about being the patient is not having to deal with the situation, but I can only wonder how I would have reacted if the roles were reversed. I’d like to think that two decades of sea canoeing have taught me enough to manage those first five crucial minutes of an emergency, but then nothing is ever how it is in the textbooks. I think most people these days have a basic understanding of first aid (airways; breathing; circulation, right?), but how often do you actually need it suddenly, completely out-of-the-blue, and after a regular day at the office? Most will be familiar with the recovery position, some may have even trained to do it, but what if the patient is stiff as a board? What then?
Once I’d been unwired from the EGC and my head had been glued back together, we made our way. By this time, however, we’d missed our social engagement so opted instead for a meal at a surprisingly good sushi restaurant. Not surprisingly, my recent blackouts dominated the conversation. Tom was visibly shaken and, for a time, quite upset but, as we gorged on expensive food, the situation began to improve. I think I did a pretty good job of being as blasé as usual but, on the train back out of the city later that evening, I worried. This one had come out-of-the-blue – no forewarning at all – what did that mean for the neurologist’s diagnosis?
The following day, I rang the neurologist’s secretary – a spectacularly efficient, well-organised and polite middle-aged lady, with the news. Somehow she got hold of the neurologist straight away, and I did my best to explain what had happened. Clearly I wasn’t the best witness: he asked if he could question Tom directly, and I gave him his phone number. He then said he’d been reviewing my MRI scans, and that I’d be pleased to know that everything was normal. I’d actually forgotten all about this – not that I’d had the scan, but that he’d be using it to look for problems. I was so absorbed by the novelty of having pictures of my own brain, that I’d become completely distracted from the fact that the whole point was to find something wrong with it. As the scan had come back “normal” I didn’t know if I was supposed to be pleased or not, but he reassured me that this was exactly what he had been expecting.
For the second time, the neurologist raised the question of driving. “You know you shouldn’t be driving, don’t you?” he said again. The first time he had mentioned it, I had taken it as advice. The kind of advice that you know is sensible, but it’s down to you whether or not you take it. I know that sounds bonkers, but the casual way in which it was first mentioned, and the massive impracticalities associated with being without a car had put it very low down my list of thoughts. “Yes…” I said, with clear guilt in my voice, “I just haven’t found a way around that yet.” His tone became much more forceful. “Now look,” he insisted, “you can’t drive. It is illegal for you to drive. It’s against the law. You have a duty to surrender your licence, I have a duty to inform you of this, and I also have a duty to inform the authorities if you don’t. More than that: consider the consequences.” Bang. This was not friendly advice. Impractical or otherwise, for the sake of myself and everyone else, I was duty-bound. Like it or lump it, I’d just have to find a way of striking up deals with colleagues to get between my rural home and my even more rural office. I put my licence in an envelope with a covering letter, and off it went back to the DVLA.
A few days later, various items of post arrived. Some were to confirm appointments arranged on my behalf, but there was also one from the neurologist, which read “I spoke with Tom Coates who had witnessed your latest attack and I think there can be no doubt at all that it was a fit”. A fit, I thought. What’s the difference between a fit, a blackout, and a seizure, then? When I think of the term “fit”, I think of the term “epileptic fit”… does that mean we’re talking about epilepsy? If so, what the hell is epilepsy? Hasn’t it got something to do with strobe lights?
More on that… in a bit.
So, I don’t really think Mo does this experience justice from my perspective, so here’s what happened from my end.
I’m standing there chatting to a friend who has so far refused to explain to me why there are pictures on Flickr of him covered in bruises and I say, “So what’s up” and he keeps looking straight at me and gets stuck in the middle of a word, with his eyebrows up where they normally are, looking like the whole thing’s a bit of a joke, and then slowly and systematically appears to go totally stiff and solid, before elegantly careering down onto the concrete in the middle of Oxford Street, in the middle of the day, crowds everywhere, rolling backwards on his backpack, and forcibly smacking his head against the pavement.
Initially, just before the fall, I’m all “Oh don’t be a dick” before realising in short order that he’s not taking the piss and there’s something actually seriously wrong, at which point I’m left shouting on Oxford Street to anyone who’s passing for help, while trying to work out how to stop him swallowing his own tongue. He’s stiff as a board, getting increasingly sweaty and hot, froth bubbling out of his mouth, I’m trying to hold his head in my hands (now covered in blood) and a small crowd of interested bystanders are watching the whole thing with fascination.
A woman turns up and I’m trying to work out with her what the recovery position is while everyone watches and observes things, and I’m totally convinced that we’re going to do something wrong and my friend is going to drop dead and I’m not only going to have to make do without him, but it’s going to have been my bloody fault. And we’re frantically running around trying to rearrange him, although it’s bloody hard because all his limbs are completely rigid, and there are people all around us who aren’t helping and we’re shouting for someone to call an ambulance.
All things considered a strange lunch break.
At some point I’m completely convinced that someone’s going to take his wallet and I have no idea who to trust. A crowd grows around us but no one actually does anything but get in the way. All these eyes sort of bore into you. What if I make a mistake. What am I supposed to be doing!? If ambient adrenalin would have done anything to help, he’d have been up and running around in no town.
After about two minutes, our hapless hero/victim comes briefly out of his fit. I think this is all going to be fine, although he clearly has absolutely no idea what’s going on or why everyone’s so concerned. Blissfully ignorant he mumbles and bit and then almost grumpily tries to dismiss us before falling almost immediately into a deep unrousable sleeplike state. Again, I have no idea whether this is a good thing or a bad thing. At some point in all these proceedings he’s breathing like a planesaw. I don’t remember when.
Eventually an ambulance arises. The woman who was helping us disappears immediately – I wonder if she’s an ex-nurse or something who doesn’t have insurance for medical malpractice if Captain Fallover is seriously damaged by the whole situation. The ambulance people growl at everyone nearby and ask me an enormous amount of questions that I can only half answer and then with significant speed and urgency – clearly really quite worried about the whole thing – get him onto a stretcher and into an ambulance.
I’m not allowed in the ambulance, and so have to wait outside. The crowd dissipates almost immediately, and within thirty seconds I’m alone by the side of the road, opposite Centre Point next to an ambulance with throngs of people walking by on the street – the only sign of the whole thing being a patch of blood on the street, right near the Argos, against the wall.
I stand outside on the street for fifteen minutes not having the slightest idea what’s going on, still scared out of my mind, only for the door of the ambulance to eventually open, and Mr Morgan to be sitting there, quite apparently cheerful and mystified by the whole thing, looking entirely bemused—and not entirely horrified—by all the attention! Swine! Bastard!
The rest of the day is roughly as our hero has indicated, and he’s TOTALLY right when he says that once we’d determined he was initially okay and once I didn’t have to be the solid reliable calming one any more, I sort of freaked out like a motherfucker for a few minutes! Lazy bastard slept through the whole thing! What the fuck does he know!
My thoughts are with you, Mo. I had a similar experience a couple of years ago, but I was lucky – it was a one-off. After months of tests, specialists and no driving, I was given an all-clear. The diagnosis was: “unexplained fainting event”.
Hope things get better for you.
Criminy. You have been through the wars. And Tom, kudos to you – you didn’t go running away into the night which in these situations is all anyone can ask really.
Tom’s Twitter sent me in your direction and for once, I might have a few bits of experience which might be useful.
It’s a bit of a shocker, having a fit. I imagine – I say that because my brother has been having Grand Mal seizures since he was a wee kid and it does become increasingly obvious that when you have fits, overcoming them is a collective effort. Hopefully you’re surrounded by people who love you when you have them, or, as happens often, you’re not. And it’s an extremely worrying experience for the total strangers who are surrounding you in the middle of say, Borough Market on a Saturday, which is what happened to Steve once. Before he got married, I was very used to being called by the cops to come to some hospital or other where Steve was gradually getting to normal after the latest brain shut down. When he was young, he fought against it hard, and decided to go and do Buna Camp two summers running. My Mother was sick with worry – he could keel over at any moment: in the bath, by the side of the road, fall on to a railway platform, be alone in the middle of a bar some place…
…but the same things could happen in London. He fell and cracked his head on the edge of kitchen table once and was not only fitting but out cold for several hours. That was good! We liked that one. But, his drugs have got better, and better. He’s on them for life and they have funny side effects (look in to yours) like sensitivity to UV light but he hasn’t had a fit in a long time. Realistically, given that it’s under control, he’s more likely to die and untimely death at the hands of a mugger than by having a fit. Or, er, something like that.
Tom did fantastically well and it sounds like your workmates are coping well too. And you’re doing a brilliant exercise by being completely open about it. One very useful thing to do is not only make sure that everyone in the office knows what to do if you have one, but also your close friends and your family. Steve has found it very reassuring that everyone knows, so in effect, he doesn’t ever really need to talk about it.
There are obviously differences between the fits that Steve has and the ones you are having, but they’re surprisingly limited. I think what is useful is that you don’t have to go through your rebellious years whilst being in a position where you have to take drugs every day. Steve was on a medication at the time that was effectively neutralised by alcohol. What did he do? Get hammered, regularly. He was protesting his fate like mad…. with predictable and really very frightening consequences actually. Luckily, for a bloke with a Fine Wine diploma and a history of working at Oddbins, his newer medication doesn’t get affected that much by mild pissed-ness!
If you think it would be in any way helpful, I can pass on Steve’s email address. It might be worth talking through the different life adjustments that he has made – I’ve gone sort of blind to them after all these years.
Also, having read on ‘a bit’, the DVLA thing – I seem to remember if you’re on medication and fit-free for 5 years, then you are allowed to drive again. I know Steve’s in the “OK” zone again now but since he’s never had any lessons and lives in London he now can’t be bothered (and his Missus drives).
Two things my “big sister worry” head would make me say to Steve at this point: if you’re still having fits on and off as things move forward, then think carefully about whether you want to continue living on your own. Steve did for a while, but as I say, cracked his head and so forth. Secondly, stay well behind the yellow line :)
Good luck. It’s dealable. xx