Meningitis in your words

Robin Tudge's story

  • Location: England
  • Categories: Meningococcal
  • Age: Teenager
  • Relationship: Self
  • Outcome: Full recovery
Robin Tudge

Some grey day in December, 1993, it was about 3pm or so, must have been as it was still light, I remember getting off the bus in Dingle, Liverpool, where I was a student, and crossing the road I felt this itchy feeling in my calves.

I got in to the flat, a massive Victorian conversion of two maisonettes above the shops on the Aigburth Road, nine of us students lived there, it was a bit dingy but with a very nice landlady who owned the photography shop underneath. A few of them were milling about when I got in, having a tab, watching TV, revising notes, pottering. I guess I had a tea and a smoke, but the itching was incessant, raging almost, and wouldn’t go no matter how hard I scratched.

Within an hour or so, I was also beginning to shake with cold and feel a bit queasy. I can’t remember having dinner, I probably ate something, but was feeling more and more grotty as the shakes turned to sweating. It was shivers and sweats and itching there on in, and I began to feel really quite sick at about 7pm or so, and I went and lay down in bed, shivvering and scratching. Within an hour I went and threw up, felt better, drank some water, and went back to sweating. Then I threw it all up again, and that’s how it would continue for the next several hours, throwing up, downing water, throwing it all up again, until the sick was black.

All the while a headache was coming on that grew more and more intense, and global to the head, and left me more and more bent over each trip to the toilet, while my clothes were wet with sweat which made me shiver all the more. One flatmate came in late in the evening and saw me looking awful, and said it was because I didn’t eat enough, which was his pet theory. I said whether that’s true or not I’m not really in the mood to hear that now, and the git left.

"This was very strange, alarming, even, but I was so weary and confused."

I tried to think through what it could be. It couldn’t have been a hangover as I’d not drunk much the day before, or anything, I think. Food poisoning? Same, I’d not ate a lot or anything to cause this, and though I knew little about food poisoning, this just seemed a bit extreme to be that. Flu? No. Just feeling sick like one does as a child, warranting a day off school and tomato soup and Lucozade? No this was beyond that.

My head was hurting such that it felt my vision was greying out, and the night properly set in, everyone in bed, all quiet, except me, throwing up, feeling worse and worse, dozing off, then waking up with my head bursting, being sick, sweating, drifting off again into those strange, oppressive, looping dreams you get when you’re ill, floating in agony between the two swirlingly asensical dimensions of consciousness and unconsciousness. Then at one point, maybe 3 or possibly 4 am, I tried to get up to be sick but found I couldn’t move. Nothing was responding, which was really weird, my limbs and back said ‘no’. Was I so tired I just couldn’t move? This was very strange, alarming, even, but I was so weary and confused.

Still I was beginning to realise that, whatever it was, it wasn’t going away, and whatever it was, was getting worse, and it was already bad. I did think it could be meningitis, but not because I knew about meningitis, I really didn’t know anything, but I knew meningitis was bad, and affected young people, just not exactly how. I simply felt very bad, ergo it was a very bad thing doing that. I’d have to do something, but what I didn’t know. It was dark, everyone was asleep, there was no-one to help, and I’d hoped I’d just get better, but that wasn’t happening, on the contrary, and this was getting scary.

About six in the morning, I remember it being six for some reason although it was already getting light so it must have been later, in any case I felt this shiver of energy go through me, and I tried to roll over to get up off the bed, and could in fact move, and I thought then, if I don’t go now I might not get another chance. As I sat up my head was simply killing, so heavy with pain as if the blood in it had changed to mercury, but it was now or never, went bent over out the room and banged on my flatmate Mike’s door, shouting as best I could about being in pain, distress, etc, I heard the poor bastard waking up and panicking as you would when that’s going on at your door, and he came out, and I told him I had a headache from hell and been sick all night and didn’t know what it was but it was bad, really bad, as I fell onto the sofa whining, and good on him, he took it seriously, and called an ambulance, and I said loudly as he spoke to them ‘my head hurts, really, really hurts’ and he repeated it verbatim to them, good man.

Then while I lay on the sofa, stoned with pain and exhaustion, he paced up and down the room fretting for the ambulance, ‘where are they? Where ARE they?’ Sunlight was filling the room by now. I think I would have woken Mike earlier but I didn’t want to ruin his sleep, things are so much scarier when it’s dark outside and I didn’t want to wake anyone.

"I gave a wave and smile to him and Mike, said quietly, ‘it’s all right guys’. Wasn’t though."

They did come after what felt like an age to me, or what was probably 10 minutes really, and a tall gaunt balding man came in and calmly asked me what was going on. I couldn’t say much, and felt bad when they asked if I could get down the steps to the ambulance and I said no, which was something of a defeat, I’d never not been able to get anywhere before without help, so they put me in a chair and carried me down the metal steps outside, poor buggers. Just before we left the flat another flatmate had turned up, very nice guy, and he looked shocked, and I gave a wave and smile to him and Mike, said quietly, ‘it’s all right guys’. Wasn’t though.

It was one of those gorgeous crisp Liverpool mornings, still so quiet as well. Driving along the wide, silent streets, with the paramedic in the back asking me questions, he was a nice man, and I gave low-voiced answers about my degree, how I wasn’t enjoying it, but it took me a long time to say much as my sentences drew out from tiredness. At the hospital, I was chaired into A&E and very quickly taken into a cubicle, was stood out of the chair with some help, and heaved onto the bed, a bevy of nurses and a doctor around me, questions being asked, blood pressure taken I’d guess, a blood test done, sweat-stinking clothing removed, with a classic one of me thinking ‘o Christ my pants aren’t fresh, o how gross, only now I remember the adage, keep em clean in case you go to hospital,’ or whatever it is.

They rapidly knew what it was, didn’t tell me though, but they had a very good idea within those first few minutes, as they later said to my folks. I gave my address and phone number, 081 xxx xxxx as it was then, briefly 081, to this senior nurse, but saying each number took an age to say, and she immediately went off and phoned my father and told him what they strongly, strongly suspected to be the case, that it was bacterial meningococcal meningitis, and they’d better come up … and being a writer about medicine and science he knew immediately the gravity of the situation and told my sister who was at home at the time, and she packed bags as fast as possible while he phoned my ma at work and explained the situation, and said we’re coming to pick you up on the way north …

I was convinced a bottle of Coke would perk me up, and I asked a nurse for some, and he got me some orange squash instead, which I threw up over his arm, and said sorry. Then I was taken for a lumbar puncture which meant crouching me on a table on my side, and bending my head down as far as it’d go, which with a very stiff neck – another symptom – was agony, and they had to hold my head all the harder to get it down so my back would be arched. I cried with the pain. After that I was put up in a quiet room upstairs, no-one else there, except a nurse came in once, and I asked for painkillers, and got two paracetamol and I thought that’s just so shit. Thinking back that’s when I must have been getting closest to tipping point, I wasn’t being treated. They were on it, as fast as they could be, but nothing was happening in those minutes that seemed like an eternity.

Then on this wheelie-bed I was moved down, classic bed-view of a ceiling of strip lights going overhead, and regular thudding interruptions from double doors, until we got to an intensive care room where this cat-o-nine-tail of diode monitors were stuck on me and drips and needles and stuff jacked into my elbow joints and wrists and neck, all being jemmied in, not that I could respond in any way by now, really I was just limp, and I was lay down with my head by now which felt as if in the grip of a giant hand crushing it, vision going with it, then an oxygen mask was stuck on me. I can’t remember if I knew by then what I had, but from the machines and the feeds and all else it was obviously serious, and I drifted in and out of consciousness, the hope of a quick fix to this, some injection that would sort it in an hour, was all gone.

The family were on their way. Pa absolutely hammered it up the motorway, his plan half being that if they were stopped by the police they’d explain why and get a speedy escort north. One of those occasions where you must think if there’s ever a time in our lives where we floor it to 100 mph and nail the pedal to the floor, it’s now, with no thrill, all necessity driven by fear, just to get there as fast as possible, to think, ‘if nothing else, God, let me do this,’. Our lovely old VW Passat never really recovered from the drive. Not to overly anthropomorphasize a car, or over-romanticise, but it was as if the old thing gave its all in the drive to Liverpool.

"They asked me some questions but I couldn’t reply, not because I had an oxygen mask on that was pressing into my face, but it was too painful to speak."

I think the three of them arrived early in the afternoon, they came into the IC room in plastic aprons and face-masks like the nurses had on, as I was totally contagious, so all I saw of their faces were their eyes, all so wide and staring with worry. They asked me some questions but I couldn’t reply, not because I had an oxygen mask on that was pressing into my face, but it was too painful to speak. Too painful to do anything. Even moving my eyes from left to right to look at them either side of the bed was excruciating, as was making groans of pain. My other sister was desperately on her way over from Manchester, somehow her housemates brilliantly got the urgent message to her (no mobiles in those days, nor pagers even) and she came over as fast as she could, but one poor friend had also been told to find her and spent hours increasingly frantically trying to track her down, not knowing she was already on her way.

I was conscious, albeit very tired, drained, certainly woozy if not delirious from pain, and realised the family were soon not talking to me but about me and wondering how much I understood, and I realised that while I knew I was conscious and understanding things, I wasn’t really communicating with them, and they didn’t think I was in the world with them. This was an insight into what many years later would be known as butterfly in a diving bell syndrome, I think. So as they fretted and sat or went in and out, I lay in agony and had a ‘conference’ in my head, in what I visualised as a tiny, dark grey room, so enclosed and claustrophobic and without light as if the pressure that was literally on my brain had swelled everything such that it blocked out all light from thought. I was locked in there, talking with myself, debating questions:

‘This is really serious, isn’t it.


Am I going to die? I don’t want to die, but am I?

Well, there’s nothing to be done if you do. You might well.

But what if I live, and this is it, forever? I’m like this, in this much pain? Would it be bearable? Would it improve at all? How am I going to communicate? How would it ever be worth it? If I can’t live this way, how am I going to finish it?

The family all had their own things to consider, namely that, as I later learned, they’d been told it that I was in the best possible care and the medics thought they had managed to catch it early. Even so, and even so, they said it’d be 50-50 for the next 24 hours, and in reality, they were told they’d have to seriously prepare themselves for the worst. Ma and eldest went to the hospital chapel and prayed.

They must have gone at some point to a hotel and get through the longest night of their lives. I lay there passively fighting for my life, or rather providing a battleground for the anti-biotics waging war on the bacteria, which as they die I think break down release toxins and cause blood poisoning and gangrene, leading to limb loss, brain damage, deafness, and this is what many survivors are blessed with, it’s a really evil disease. It’s 100% fatal without treatment and one in 10 die with treatment anyway.

The night was long. I sometimes awoke, tried to get the mask off, then had it put back on, would growl through gritted teeth, then pass out again. The room was so dark, just the little lights of the monitors, many monitors, different coloured LEDs and screens twinkling in the dark, like a proper Space Lego diorama, and a small desk lamp where sat the IC nurse monitoring it all, all night through. She was so calm, and so pretty.

At some point I could see the most beautiful dawn developing. Liverpool had sunrises of such vivid beauty that I’ve never seen anywhere else, but as the sky got into its stride of colours the nurse stood and closed the blinds as the light would hurt my eyes.

As morning wore on, the rellies came in, aproned and masked, I could speak a few words to the family but the pain was still such that I mainly lay there, not moving, it even hurt to fart, I could feel the sensation from my bum and the pain going up my spine until it hit my head about 6 or 7 seconds later – not the smell, just the physical sensation of a muscle down there having moved. But no matter at that point, they were relieved, up to a point. It seemed the worst part had been weathered, and I was alive, albeit only only just, and awake, but unable to do anything with it.

Hours passed and things slowly, glacially improved, vital signs in any case although I was still simply prostrate on the bed. The next day I was improved some more, and the next day they didn’t have to wear masks and aprons, and they sat and talked, and then bought and played Scrabble and Monopoly to pass the time they wanted to spend at the bedside, which was all the more poignant as the decision was already in the open that ma and pa were going to split, as they did several months later, and we’d lose our beloved home 208 in the bargain. But there they all were, keeping vigil together. My flatmates also came at some point, must have been early on as they were in aprons et al, and were shocked, I saw in their eyes. It was nice to see them, although to he who said I didn’t eat enough, I couldn’t help but think ‘HA! Spiked your cannon, eh?’

"But bit by bit I got better, was awake more, talking more."

I still felt sick and was being sick, my head pounding, and the drips and diodes and all else that was stuck into me being changed in my arms, wrists, neck, old ones coming out, new ones going in, another day of this, and then another, and so on, every time I turned my head or tried to move in the bed I had this sense of pulling on the ones in my neck, tied down by these horrible strands, like Gulliver, and if I sat up they jangled like cheap plastic chains. But bit by bit I got better, was awake more, talking more. I was clearly in the clear, enough for pa and sisters to go back to London, via Manchester, I think. Ma stayed on to finish up and bring me home.

I was moved out of IC and up to a small room upstairs, with a TV and things, and I was now able to eat and drink a little. My head still hurt, but where I’d gone from crossing the road to Death’s door within 24 hours, within a week of coming to hospital I was up and about, eating, drinking, and being lined up for discharge. I think the morning of the day I was discharged though I wandered about a bit on my floor and came across a large ward with old people in it, very old people, on their way out mostly I’d have thought at the time. The ward was cast in this yellowy light coming through the drawn curtains and there was such a fetid smell, which isn’t really fair on them to say, but they looked like ghosts, and I felt like one. It terrified me to think it’d all end here some day, again, having already done so so nearly, and made me think I never wanted to come back to a hospital, ever.

I’d lost a stone in that week, and looked gaunt with black rings around my eyes, looking like Death – who’d had his little game then fucked off to Bristol and Southampton that same week and cut down a handful of other young lives, as my ma told me on the train home from Liverpool, she’d genuinely tried to cheer me by putting it in context with a newspaper story about a slew of deaths and maimings by meningitis across the country in recent days that showed how lucky I was, but I said I really didn’t want to hear it, and sitting up was killing my head so I went and lay down in the wheelchair space next to the vestibule, eliciting comments from passers-by about ‘bloody layabout students’ or words to the effect of, which I didn’t hear but ma did, much to her upset.

And my own upset, that’d take a while to surface. It was nice to go home early for Christmas, our last at 208, everyone was there, extended family, all pleased, but shaken, in shock, relating how they heard the news, but it was all good and well now, and I had a sense of elation, ‘phew, that was a close one, eh?’ … but over the days at home I forgot how many times I’d just find myself staring at a wall or at the floor, replaying it all … I got quite a few get-well-soon cards from people, even my uncle Richard’s mother, Hilda, who sent one with a picture of Labrador puppies on the front, and inside she wrote how good it was that I’d gotten through it and then asserted the real point, that ‘aren’t these puppies sweet?’ And I thought that was brilliant, almost cried with laughter as I had to agree, ‘yes, yes, they are.’ Friends came, and said I’d been attacked by these evil little creatures called ‘menings’.

The first night I was allowed to drink after three weeks of antibiotics we went to an art students’ party and I got absolutely trashed, as I ended up doing time and again afterwards. At the party one chum had a middle-aged woman come up to him and give a flyer about meningitis, and he said no it’s fine, I know about it, my mate him over there literally just had it, and he’s OK. And this lady looked over and saw me barely standing, ginned out my mind, and said how pleased that made her, as her son was a student and had had it a couple of years before and it’d killed him, and hence she spent her time raising awareness. He felt so bad afterwards for being so glib, but he wasn’t to know.

The knock on of depression smashed in a few weeks later, I gamely went back to Liverpool but very very quickly the game was up. Got to see the student counsellor, such a nice warm woman, all the more so contrasting with her coldly lit office, and we chatted and within minutes I just sat and wept while she said how bad and frightening it must have been, and how much stamina it must have taken to get through. Left the university a couple of weeks later to transfer to Manchester and cut all ties with Liverpool, just wanted to forget it all, which wasn’t wholly fair, for Mike, Tom and Dan were good guys, Dan had been so sweet and helpful to my pa and eldest when they went to the flat to get my stuff. It wasn’t their fault, but … for months afterwards I couldn’t even watch the opening titles to Brookside, with that strangely maudlin opening tune over the shots of what’s such a beautiful, romantic city, hauntingly so.

Seriously, it’d come on Channel 4 and I’d have to turn the channel over. Simply the speed of the decline made a mark. A few months later I read an article about Alzheimers, and then had this horrible dream where I went to the doctor’s and he said I had ‘Menzeimers’, in which I had 24 hours to remember who I was, from which of course I woke up in terror.

One of those occurrences that years and years later I can end up doing some kind of 1,000 yard stare thinking about it. I have only one official record of it in my possession, a note from the hospital to the personnel department at the museum where ma worked to say she was with me all those days, while I was ‘dangerously ill’. Not sure why but I’ve recently sought to find out about the spate of cases around that time, and my own case, having phoned the hospital who said they may well have microfilmed the case, and the Meningitis research foundation very kindly said they might be able to find info. A lovely woman she was at the latter, and I said I was a journalist, but that was incidental, then found myself trying to justify why I wanted to know about the others from those days in December, ‘one can interrogate one’s motives, and yet … I, I don’t know really know why …’

Robin Tudge
April 2015