12. The End Of The Hollow Time

I think of my week in intensive care in Leicester as 'The end of the hollow time'. It was still sucky, not being able to move, but I stopped being in pain. No more were the days of not knowing whether to squeeze yes or no when asked if wanted painkillers, when I was just incredibly stiff and wanted to be repositioned. I indicated I wanted pain relief a few times in Leicester but gradually I didn't need this. My right hand grew strong enough to point out letters on the board and there were plenty of miscommunications but also good communication too. My family were allowed to come 12-8pm, which they did, and I had regular visitors. I felt strangely comforted by having a nurse with me 24/7.

Lots of nurses have told me they have children my age at university. On nurse told me about her son who'd just letft home for uni, and it was very touching. We were both crying. She was trying to comfort me, calling me 'Elizababy', (I gather I was by far the youngest patient there). I wasn't emotional for my sake, it was just very moving when she talked about her son.

I had another nurse who was best friends with one of my nurses in Sheffield, which was a nice coincidence. (They definitely talked about me). I remember making an 'ok' hand gesture to this nurse. She did not understand at all, and insisted I spell it out for her. She struggled to guess the right letters and even got confused thinking it was 'ko', wondering what I meant. It was really quite funny when she finally realised I was just trying to say 'ok'.

My cough by this point was in full swing, complete with snot running down the back of my mouth which I was sure was making me cough more. The nurses had to clean out the gunk by getting a thin tube which sucked air down the traccy. This made me cough more but sucked out yuck (secretions) with a loud slurping sound. It's as gross as it sounds. Credit to everyone who stayed to watch this procedure. It would often take 4 goes at once until my chest was clear for a bit. My dad commented how painful this looked, but it wasn't, it brought welcome relief. Anyone who's had an asthma-attack knows how amazing it is to breathe deeply again. I used to long to be sucked (Suctioned); it was like being hoovered. (I know that sounds weird, but it's true).

Whilst this slop in my chest captured everyone's attention, my food tube in my tummy was beginning to feel really sore when I coughed. One day my left hand was placed over the tube and it felt really irritating. I was exasperated as my right arm was too weak to move it (I tried, believe me), and when people wondered why I was scrabbling about with my hands I spelt out 'My hand is on my keg' (I'd misheard PEG). They then realised the hole had got infected; it had got red and a bit weepy. (I believed them, but I couldn't see it). I was started on a course of antibiotics and it cleared up in a few days.

A bunch of doctors did the rounds, and it had been reported that I wasn't a fan of the lights. They were worried something was wrong with my eyes. I spelt out the whopping sentence, 'I think my reaction to the lights is normal'. My eyes were picking up light normally. The point was, when all you can do is stare at the ceiling, is not fun to just gaze into the lights. I got to know the ceiling quite well.

Lovely.

11. Time Flies

Today, a month after I arrived at Barclay House, a door-stopper has been fitted onto my door. I can now leave the door open all day and come and go as I please. It is such a small thing, a door, but it's also a big thing. I'm very slow to anger, and only complained very good-naturedly every time I had to call someone to open the door, (every day!). I am angry it was left this long though. It took me a month to get properly annoyed (upset, not rude), which I did this morning. It was when I asked someone yet again from the conveniently-close office next to my room to open my door, and they joked, "I'm going to start charging you." I just stared. You can imagine how demeaning it is to have to be let in and out your own room. Also, it's amazing how slow things can be to change if you let them.

As I was sitting in the garden, a boy about my age called TD mumbled the question "How do you find it here?" Then I said "It's alright". I asked him the same question, and he said "It's alright" too. He later lolled past me and mumbled, "Time flies". Too right, TD.

Earlier this week, we had a team meeting with James, my social worker. He was very nice and laid back. He is there to help me with organising things for the future. I told him I'd already been organising university anyway. The penny dropped for my physio that the plan is September this year, not the one after. She then came and found me later whilst I was using the bike machine. "You're serious about September this year?" I replied by speeding up my pedalling. She said, in that case, I should probably consider an electronic wheelchair for getting between lectures. I groaned. The last thing I want is novelty transport for everyone to crow over and gleefully play with. I know these student types.

I'm practising walking with parallel bars and lots of lying-down exercises for strengthening my hip. I can stand un-supported but not for long as I am very wobbley, so stand with my right arm around someone if in public. My family have been taught how to do exercises with me which they can do in the evenings. Practice makes perfect. I did quite a long walk down the corridor the other day, though my left foot keeps turning inwards so I end up walking on the outside rim of my left foot which isn't fun. I can't currently flex any of my left foot or ankle. I've been advised to get proper ankle-supporting trainers.

I've been told my speech is at the level where they'd normally leave it to its own devices, but because I'm a singer, my speech therapist said she wouldn't let me stop even if I wanted to. Today, I did some yelling at an iPad to measure the decibels of the sound. I have been reading poetry to focus on diction and breathing. My homework is to write a poem with as many 't' sounds in it as possible.

I have been doing more cooking with the occupational therapist, impressing him with my healthy veg (student budget) meals. I definitely show my planning and time management is fine, it's just the execution of the plan I'm needing help with e.g. chopping up the massive sweet potato, putting trays in the oven etc. Another key OT activity is doing the washing up, which I actually leap at the chance of, as it means standing at the sink. I can do more of this at home, where I'll be staying over the weekend. It's all flying forward. Yes, I want to go back to university in September.

Walking.

10. There Is A Balm In Gilead

My first thought when I woke up in intensive care was to encourage my family. They looked so sad. At that point, there was still some strength in my right hand, so I could make a thumbs up/ thumbs down sign, and waver my hand for 'maybe'. Somehow, I was given a pen and a clipboard was held up and I tried to write, 'There is a balm in Gilead'. This was a reference to an 80s gospel song I'd been obsessed with all summer, and a completely obscure Bible reference. I found it hilarious that the singers were really into these words, which are so obscure. I've looked it up and it basically means 'There is healing'. This was when I found out that the fine motor skills in my fingers had gone, and everything I tried to write was unintelligible squiggles. I gave up on writing that sentence and tried something simpler. After some hilarious mis-guesses, they got it. I wrote, 'Jesus'.

Eventually, I was given a letter board. At first my Mum was reading out each letter and I was indicating 'yes' or 'no', which was very boring. Soon I was strong enough to point. People frequently got letters wrong, or got the word spacing wrong. I now realise I should have used it like a telegram, but at the time it was just annoying that a space bar wasn't included. I saw it all as an elaborate game which I knew I wouldn't be playing for long.

Our friend Tom, who happens to be a neurologist, visited and gave useful reassurance. He left us a children's book that his family had just enjoyed.  I'm sure the staff secretly loved listening in as we read 'The Explorer', a story of some kids who crash land in the Amazon rainforest, and how they survive. I couldn't help but relate to the descriptions of hunger and thirst. One description of the kids eating pineapple really set me off. I started miming along to the story, and when my family asked what I was doing, I spelt out that I was acting out the story. It's hard playing charades with one hand whilst lying down.

The staff began sitting me in a chair each day for an hour once I had the traccy in. Sadly, they never faced me toward the 'amazing view' behind my head that people kept banging on about when they visited me. (I was on the 11th floor of a tower-block hospital.) I resigned myself to watching the light shine through the windows onto the ceiling when the sun rose. One time, when I was being hoisted into a chair, someone used the pet name, 'little sausage' for me. I burst into silent laughter. (I couldn't make noise with the traccy in.) They looked concerned because my face could express itself by then, and laughing looks a lot like crying. Thankfully, they worked out that I found the name funny.

Once the traccy was in they started washing me daily too. They asked my mum to bring in my own pyjamas so I wasn't just wearing hospital gowns. I actually didn't really like this, as, in order to put a top over my head, they had to temporarily disconnect me from the ventilator. My heart lurched every time they did this, but it was actually alright. (My Mum bought me nice new pyjamas because I badly pooed all over my own, which I never really liked anyway, ha.)

One day, my nurse said they'd put me in the shower and take me outside. It normally took 3 people to wash me as they had to make sure the tubes were okay. That day 4 of them tried, but I was starting to get a massive cough that activated when the tubes were moved, and the cough was putting me in jeopardy. We didn't go to the shower. I was privately relieved.

That made the nurse all the more determined that I would go outside. 3 people hoisted me into a wheelchair and a technician had to come with a portable ventilator. I think someone else came, and, along with Andrew, Margaret and Joanna (the family), we were off! I was taken down in the lift to the front door, overlooking the car park. This was ironic because I used to go down that road every week to our Christian Union which meets in the med school, literally the next door along. It was a beautifully sunny and warm autumn day, and a plague of ladybirds was out. We stayed there for about 10 minutes. I think I took a ladybird back inside with me.

Then, on Friday 12th October, they were ready to send me to Leicester. I was bundled up on a stretcher and plugged into a temporary ventilator which made it very hard to breathe. I was obviously distressed. A doctor decided to sedate me for the journey, and we set off. I was confused about this 'sedation' because I was still conscious. I kept widening my eyes at the doctor and nurse who accompanied me, to prove I was still awake. I don't think they noticed. Breathing felt very laboured, but I got used to it and I was okay. I could hear all the ambulance drivers' grumbling about traffic not moving out of the way. I arrived a few hours later, around 5pm, in intensive care at the Leicester General Hospital.

Looking back at my time in Sheffield overall, it wasn't funny, but I found moments incredibly surreal and comical. It reminds me of a poem I wrote two years ago called 'Joking Doesn't Always Work'. I was just writing about how I deal with my emotions in general. It wasn't based on any particular even, but it seems very poignant now.

Where are the emojis?

9. Saviour

The world is not accessible. Anyone in a wheelchair will tell you that nothing pulls you up short like a heavy pull door. I can't access upstairs in our house. I can't access the shower as we don't have one downstairs. (Amazingly, my parents put in a downstairs loo a few years ago.) I brushed this off, saying I could get by with simple washing for a weekend. I came home on Thursday night and will go back tonight. 

The first night in a bed put downstairs in the study was fine. Joanna brushed and plaited my hair in my bed which felt very period drama-esque. My younger cousins came for Good Friday and we had a great time in a local park. Then, all it took was one sweaty night for me to wake up early and take back my words, wishing to be properly clean. I had to wait for someone to get me up as I can't take myself to the toilet by myself. I scrubbed myself as best I could. Dad put my clothes on the wheelchair, propping the door open. Of course, my granny walked past. (She was staying with us at the time).

When we then went for a pub lunch with some friends and I got to hold 5 dogs, including 2 dachshund puppies which practically fell asleep on me, that made it all ok. Friends help too. One owner told us her dog was actually a pet therapy dog and I told her about my rehab centre, as we don't have a regular dog visitor there. The pub was very spacious and my wheelchair fitted perfectly fine in it, and I remembered that, increasingly, much of the world is accessible. That evening, we went back to my centre so I could use the gym and  have a shower. This was satisfying as, whilst my family had been having nice walks, I hadn't.

Joanna and I are planning to do a charity walk together on June 22nd. It's a Walk for Water for WatSan Uganda, a charity run and set up by close family friends. The project provides water and sanitation in the Ugandan Districts of Rukungiri and Kanungu. This is an event we have done numerous times over the years. However, this year will be slightly different. Read more about what we plan to do and how to support this project here:

How To Walk A Very Long Way.

Isn't it a relief that the message of Easter, Jesus' death and resurrection, is accessible. This Easter, I have been thinking a lot about the by standers in Jesus' story, the crowd who watched the drama play out.

Imagine you are a young Jewish person living in Jerusalem at the time of Jesus' death. People are pouring into your city for the Passover, the major festival at the time. Your grandma has come to stay from a far-off village and she's raving about seeing a man they call Jesus of Nazareth, who healed people of their blindness and forgave people's sins. She says they call him the Messiah, the 'saviour' predicted 400 years previously in your scriptures. (What Christians use as the Old Testament). You are curious, so when you hear this Jesus is coming into Jerusalem riding on a donkey you go and have a look. They are shouting 'hosanna' ('saviour'), and waving palm branches. You start to smile. Maybe he is the saviour we need, come to free the Jewish people from the Romans, who are occuping the land. Just the other day your father had been mocked in the street by Roman soldiers.

A few days later you hear that Jesus has been arrested for claiming to be 'The King of The Jews'. He must be crazy, the Jews have no king. (He never said this). You go to where the crowd are given the choice: who do they want to save? Jesus of Nazareth, or Jesus Barabbas, a murderous insurgent. (Jesus was a very common name at the time. The meaning is 'rescuer', or 'saviour,') The crowd stat to shout "We want Barabbas!", and to be honest, you'd rather have that man as your rescuer too, so you join in. Better a saviour willing to fight for you.You follow as Jesus of Nazareth is beaten and led to a hill carrying his cross. He dies quite early for a crucifixion, the sky goes dark and they check he is really dead by shoving a spear through his side. His body is placed in a tomb and that is the end of it.

A few days later, you walk past a crowd of people, and a man is teaching them. It is the same Jesus. You scratch your head. Didn't he die? Here he is, bringing healing and talking about forgiveness all over again. Now, is that what it is to be a Saviour?

Snug.

8. Peach Iced Tea

I was thirsty. The first two weeks of not drinking water were excruciating. I was having bizarre fantasies about peach iced tea. When a speech therapist first introduced us to a letter board the first thing I spelt out began with 'th' and she said "Is it 'thanks?'" and I confirmed this as I wanted to be polite, but then I followed this up what I really wanted to say, which was 'thirsty'. My parents told the nurse and they assured me I was getting enough water through my nose tube (NG), but I was a little concerned, were they giving me enough? How were they supposed to know I drink lots?  (This speech therapist also massaged my cheeks by putting her fingers in my mouth and my parents were very excited by my first shrug when they asked me how it was.)

Three weeks in, on the 8th October, I had a food tube (PEG) put directly into my stomach. I woke up after the general anaesthetic with nothing in my nose, thank goodness, and a thin two-finger length tube coming out my tummy. (I loved general anaesthetic; it was the best way to pass the time). The stomach tube wasn't sore so I couldn't feel or see it, I just believed that it was there. I was glad the tube in my nose was gone. I never saw it, or felt it, but I was uncomfortably aware when a nurse fiddled with the string that went up one nostril and out the other to hold the tube in place. Something must have gone wrong with it because a few days before the PEG tube, the nurse had been fiddling with it loads, and before I knew it, a doctor was coming to replace the NG, which felt awful. I know you're supposed to swallow these tubes to make them go down quicker but I couldn't swallow. Putting it in felt how you would imagine it. Grim. Afterwards, I felt something fleshy hanging around in my mouth, and batted it around in my mouth with my tongue. I don't know what this was, but at some point I must have swallowed it.

Luckily, I lost my sense of smell for about 4 weeks, and with it my sense of taste. This meant I was oblivious of the horrible taste of my mouth. (That joy came later). Every night in that hospital, someone would brush my teeth, squirt water in with a syringe, and clean out the whole thing with a sucky-air tube (saliva-ejector). I lost count of the number of times someone said "It's like going to the dentist!" Why, I thought a lot of sarcastic things, let me tell you. I found this procedure such a waste of time, nothing had been in my mouth so why clean it?!

I was a lot more aware of what was going on the third week. (Except one story my family tells me which I don't recall, where a doctor came up to me and started speaking to me excessively loudly. They pointed out that I never had a problem with my hearing. They said he was asking me very basic questions and I just wasn't responding. I claim this must have been because I wasn't, in fact, awake.) I had bad double-vision. It meant my eyes were out of sync. The left eye was worse than the right, but both were playing up, bouncing up and down in a very distracting way, not putting their images together properly resulting in a doubling effect. This meant I was given an eye patch to swap to each eye in turn. I didn't like this because it blinkered me, and I couldn't swap it over when I wanted to. Of course, I got all the pirate comments - how come there are no other popular associations for eye patches?!

One morning, a nurse put a laxative pill up my bum. I couldn't make facial expressions but inside my eyebrows were raised. Oh no. Later on, Asli and Hana came to visit me. Imagine my horror when I suddenly did a big poo under my sheet. There was me, in my pirate eye-patch, completely unable to express what just happened and unable to smell if it was obvious. All I could do was howl with laughter on the inside. Thankfully, they didn't notice.

My family's literature degree.

7. Taking Notes

One thing I'm really feeling right now is how expensive it is to be disabled. It's annoying because I'm getting stronger quite quickly, so lots of kit is not long term and a bit of a waste. The NHS provided me with everything up to this point like my wheelchair, splints etc. but we've had to get things for the house like a wheelchair ramp, and install a handle on the toilet, and these are things I won't need forever. (We didn't wait on James to supply). I guess we can always donate stuff back to the places where I've stayed when I don't need it anymore, but it feels so eye-watering.

I have enrolled to go back to university next year in Sheffield. I asked the accommodation officer what accessible accommodation they have on offer, and everything they offered is around double the price I paid in first year. (The bare minimum). I have to accept the fact that I will need an ensuite bathroom, but it's hard to know how much space I'll need as I'm hoping I'll have shaken off the wheelchair by then. I know I'll be eligible for grants, but it's still annoying to accept. My friend Anna is planning to live with me, and we are looking for other accommodation opportunities as well, but I'm resigned to the fact that disability costs.

Yesterday I went with Nick, the psychology assistant, to register at the University of Leicester library. I'm going to get a head start on my dissertation and not letting my mind fall fallow. (It's going to be around the topic of the significance of animals in children's media by the way.) Normally, I'd walk, and I did look up how to get there by bus, but it would need a few bus changes, and in the end I just paid for a wheelchair taxi. This was a £12 round trip. Nick was very blasé about the whole thing, but his face fell when we were told we needed ID photos and could get them in the local Morrisons. That would mean 20 minutes of pushing for him. To his relief, they thought the students' union on campus had a photo booth, and, after one wrong turn, we made it. I did a strange strep transfer into the booth and Nick bought me some juice to break my tenner into coins for the £5 required for the machine. We arrived back at the library front desk victorious.

We met my friend Susanna, who just happened to be studying in the library at the time, and we navigated the Dewey Decimal System together to find a book I wanted to look at. (My friend Asli was also there, but was on the phone, being regaled by her melodramatic grandma.) Susanna helped me take photos of the pages I wanted to take notes on, and Nick said I should write them up later. Whether I'll need so much support for the actual diss next year remains to be seen.

I have been practising my writing and I have just about wrestled it between the lines, it's just very drunken spider-y. I've been practising handwriting with complicated words like 'physiotherapist' and 'neuro-psychologist'. Someone reminded me of the 'h' in 'physiotherapist' and off I went. I'd been practicing an A5 page-a-day of this when someone looked over my shoulder and pointed out the 'h' I'd been missing in 'neuro-psychologist'. I can't win.

Someone getting a little too excited.

6. The Plunge

My second week in hospital was the worst. Medically, I was stable, but I was plagued by awful dreams. The plots of the dreams weren't scary, in fact, they were quite amusing, but they were long, and tedious, and made my skin crawl. I laugh a lot about them now, but at the time it wasn't nice. (In one my night nurse and I were transferred to New Zealand, and my mum had fallen asleep on my bed so she came too.  We stayed in a girl scouts' lodge, laid out across some jungley hills. My friend and his mum came to visit with jet packs, but had come via China). I always knew they were just dreams, but they felt so vivid that when I could use a letter-board I spelt out 'hallucinations'. I cursed myself for making my family worry about something factually incorrect, but I didn't know how else to describe what I was experiencing succinctly. As soon as I told my dad, and he put it on his blog, they stopped.

One nurse also talked to me about anti-depressants as she said there might come a time when my family couldn't come to see me, and they might help. I agreed because I felt so hounded by bad vibes in the night. I never had to have this medication however, as my family always came, and they always told me who was coming, and I always felt reassured I would be ok. This nurse also told me she knew I was a fighter, and that I was going to walk back in a year later with red streaks in my hair. I agreed with her but doubt about the hair.

At some point, my right side got even weaker than it had been. I had made scribbles with a pen when I first woke up and could do a thumbs-up/thumbs-down and an 'ok' hand gesture. (To my aunt's confusion and then amusement). However, as time went on, this was reduced to just being able to squeeze for yes and no. (The left side was always paralysed). I was also experiencing massive shaking in my right side which was basically muscle-spasms called clonus. On the 2nd October I had an EEG. (Which no one told me about, I just remember being hustled off). This measures electricity in the brain and indicates epilepsy. The results came back negative.

During the three weeks I was in Sheffield, I was consistently visited by friends and family. (And have been ever since). My former housemates Adam, Cameron and Fran had to be politely dissuaded from coming all the time to allow room for other visitors. (They were the first at the hospital when I was taken in, but weren't allowed to see me as they weren't family). Former housemates Mary and Tash flew from where they were doing their years abroad in Germany and Honduras respectively, and my friend Anna flew from where she was doing her year abroad in Senegal. (I'd been admitted on her birthday. Great present). My final ex-housemate, Celia, couldn't come from where she was attending a conservatoire in Madrid, but she composed a harp piece just for me. There were other hugely moving words and songs and messages for me. (This included my friend Elise opening up the Bible because she knew I liked that, and reading me the crucifixion). I had so many greetings from people I know in far-flung places, that I feel bad for not mentioning them all.

My favourite memory is when Mary visited me, and etched into my memory is her commenting on my 'spitty family'. (Well, we were all crying). I asked recently what she meant and she was baffled. I don't think she said this, but the question of what she meant kept me going.

I knew I was being melodramatic when I spelt that out but it got the point across.