22. Team Elizabeth

At this point I was not eating anything (nil by mouth). My mouth was certainly moving but swallowing was a bit laborious. Brain injury was actually where Charlotte the speech therapist was based (she visited me in intensive care). So she started to visit me nearly every day. I loved this; she made me laugh. My speech was getting better by itself, just by me talking all the time. I never found this fatiguing, just funny to hear my voice modulating. One of the main jobs of a speech therapist who specialises in brain injuries is actually to work on people's eating.The muscles used for swallowing are the same for speech, so I don't know why they're not called 'swallow therapists'. (They're actually called 'SALT', for 'Speech and Language Therapist'. I was a bit confused when I could hear staff say they were waiting for 'the salt' until I worked this out.) One time Charlotte gave me a cheek massage to open up my jaw and to try and remove tightness in my face. Another time, she brushed the left side of my face with a tooth brush.

One of the first exercises she gave me to do was to hold my tongue between my teeth and then try to swallow. Bet you just tried it. She told me to do it 5 times in a row, which would take me a while. She also gave me a squeezy plastic ball to hold under my chin. I had to practise pressing it into my chest. As you can imagine, this looked ridiculous. I had to resist the urge to just throw the ball at people. These exercises both helped in strengthening my neck muscles.

Then came the day where Charlotte started trying me on soft foods. This meant yogurt and custard pots. I actually really liked them; they were just normal ones you could buy in a shop. I found being spoon fed so surreal, it was a real challenge not to laugh. Charlotte was no help, making dry comments all the time. It was a miracle I didn't choke. I think speech therapists get so used to feeding people, they forget how stange it is. It would certainly make a good youth group game. I never once coughed on a spoonful, which I think made Charlotte worried, because that could mean I had no feeling in my throat, and therefore food might be going down the wrong way. That could lead to lung infections and all kinds of problems.

I'm not a huge foody; I never really missed food. I was being fed through my tummy tube so I wasn't hungry. I think missing food when you're nil by mouth is more of a psychological thing. What I did miss was being able to down a glass of nice, cool water. I could have 'mouthcare', little pink sponges on toothpicks that were dunked in water and dabbed around my mouth, but that was a tease. It reminded me of when wine vinegar was put on a sponge and dabbed on Jesus' mouth, at the cross. Before I could taste, I didn't realise these were sometimes dipped in medical mouthwash. I would suck them, until I could suddenly taste what a bad idea this was. Mouthcare couldn't really satisfy, so I stopped asking for it. My mouth had acclimatised by then.

During this time, I was also having terrible peeing problems. I couldn't go. I would desperately need to, but turning the tap on, or even nurses dancing to make me laugh, couldn't jog my bladder. It would work eventually, but sometimes only after an hour of trying. Once Charlotte came and did a session with me, only realising at the end that, under the sheets, I'd been on a bedpan the entire time.

One day, I got a parcel. My dad unwrapped it comedically. It was navy t-shirts saying 'Team Elizabeth', in reference to the title of the blog my dad was writing about my progress. There were shirts for all the family; my Aunt Mary in the USA had sent them. I peed myself laughing. Don't get me wrong, I really appreciated the gesture of solidarity and family support. I'd just needed to go at the time, and it was a tad embarrassing to be the centre of so much support. If only people knew my reality. People knew the muscles in my control were affected, but it was literally all of them.

My parents, Aunt Ruth and I in our t-shirts

21. To Sheffield

I went up to Sheffield last Thursday with my dad, and again this weekend with the whole family. I viewed my accommodation for next year, which has a wet room I can fit into with my wheelchair, and push-button doors already installed. A student is already living there who uses a wheelchair so they've already made changes for her. She will be there next year. I think I'll need to go up before term starts to advise where to make changes, put in grab-rails etc, but the general set up looks good. The university thankfully has a wealth of push-buttons and automatic doors dotted around site. Love is an open door indeed.

I also met the lady in charge of disability support, who, amongst other things, will help in giving my lecturers a nudge to make sure lectures are accessible. Perhaps now would also be a good time to point out to some lecturers that filling the slide with vast quoted paragraphs, in a tiny font, without key information highlighted, is no one's idea of a good PowerPoint presentation, and frankly sloppy lesson planning. I've also applied for Disabled Students' Allowance, where I'll be assessed for what extra help they could give. I'm eligible for a grant for things like equipment, transport etc. I can get a grant to lower the cost of having larger accommodation on account of disability, to the cost of an average ensuite. This will still be over double the price of the accommodation I paid for in my first year (the bare minimum).

That Thursday, I didn't really tell anyone I was coming, just met one friend for lunch. Of course, an incredulous friend recognised me. ("I thought I saw someone wearing ridiculous amounts of yellow."). There went my ninja day. This bank holiday weekend, we went up as a family, and I organised the days so that I got to see my old housemates, friends from the Christian Union, friends from my church, and the housemates I'd managed to live with for a week this year. This wasn't particularly tiring, just amazing to see everyone, and satisfying to see a plan working. It was great to get to see third years before they graduated.

At my church in Sheffield, people prayed for healing for me. I believe God can heal in many different ways, but before they started, I told them I didn't want prayer to be miraculously healed, but for the wisdom and knowledge to know that God is already healing me. I feel like God is already using my story as a way to point to him, and I'd like to finish the story the hard way, however God wills it. I want to be healed, but I know this is already happening in me. Living through the process enables God to show his glory in my life over a longer time, and gives me time to build relationships, and for my character to grow. I know God cares about my spiritual walk much more than my ability to physically walk.

I'm gonna post the link to my giving site again, as it's just 4 weeks away now. Dad, Joanna and I are raising money for a water and sanitation project in Uganda by doing a 20 mile walk. I won't be completing the full 20 (boo) but will count how many steps I can do!

How To Walk A Very Long Way

I've put my dissertation planning on hold at the moment as I've been writing a practice essay. It's a poetry comparison question I've invented for myself based on George Herbert's 'The Windows' and Philip Larkin's 'High Windows'. I am looking at how both use window metaphors in drastically different ways to draw comparisons with the effects of religion on society. I've also written a tongue twister for my speech therapist, based on my feelings about my bedroom door before I could open it. I say 'based' because  

I had to make it melodramatic in order to get all the twisting sounds in. It's called 'Doorway', don't take it too seriously! You can tell from all this I love the significance of boundaries. Windows are places of meditation, as you are cloistered in a structure, whilst a door provides passage out of a structure. I'll leave you to think about the significance of windows and doors yourself.

Speaking of windows, I also made the visit back to neuro-intensive care. One of my nurses was one of the first people we saw. (The one who said I should come back with dyed hair. Hate to disappoint.) Another nurse came round the corner quickly and asked if I remembered him. I got his name right, and he looked bashful. Gratifying all round. I left a card, and was able to say I'm coming back to Sheffield in September. I finally saw the view out of the windows everyone kept banging on about. It is a really good panorama of Sheffield, but, to be honest, I've seen it before.

Here I Am.

20. Christmas

Then one morning, bright and early, 2 nurses came in to remove my pee tube (cathata). This is like an external plastic bladder on a leg-and-a-half length tube that's emptied every few hours. The tube drains your bladder whenever it has something in it, and saves the staff having to change your sheets all the time whilst you're bedridden. (One time, someone emptied it and forgot the pot, leaving it on the window sill. I helpfully pointed this out to the next person to enter the room.) I hardly felt the tube, except once a dopey physio left it behind on the bed when he was hoisting me into a chair.  Out and about, the tube and bag was strapped to my leg with a 'g-strap'. (Accidentally calling it a 'g-string' was very common). The removal procedure was very straight forward; they just pulled it out. This sounds painful but it is not, it's just a slight tickle. This meant I switched to using bed pans when I needed to go.

I was alone in my room, but I had a button on a cable plugged into the wall. When pressed, this button lit up a light on the ceiling of the ward, and buzz, to let staff know I needed something. Inevitably, once I dropped the buzzer on the floor when I needed to wee, and as my room was sound-proof, no one could hear me even if I had tried to call out. Amazingly, my door had a strip of glass in it so I was partly visible. I wet the bed, then flapped my leg up and down as an SOS. After about 15 minutes, a funny health care assistant peered through the door to see what I was doing. I couldn't stop laughing whilst I explained; I felt like a naughty toddler. She found it hilarious too.

Later the same morning my pee tube was removed, so was my neck tube. My breathing was virtually normal. I'd been off the ventilator a week, and I only had an irritation cough whenever I had to roll on my side for the sheets to be changed. The physio in charge deemed it was safe for the traccy to go (physios are also in charge of respiration). It was a very simple matter of just gently pulling out. I could have sworn there were supposed to be stiches. Maybe I coughed them out. The physio, Steve, was a slight, parent-aged man (i.e. my parents' age) with glasses, and not a single hair on his head. I declared him Santa Claus, and that that day was Christmas come early. 2 out of 3 tubes gone. Just the PEG to go. He said he'd give me a chocolate orange when I could eat again. I reminded him of this a few months later, but have not yet received my treat! What kind of Christmas spirit is that, Steve?

The traccy left a clean, thumb print-sized hole in my neck. This hole never bled or caused a problem. When the traccy was gone, a square dressing was just stuck over the top. Initially, I had to cover the hole in order to speak, to allow air-flow into my mouth, but it scabbed over within a few days. I felt very saint-like, as George Weasley said (Harry Potter Book 7). I still have a thumb print-sized scar on my neck, but it's fading fast. I've since met lots of people with similar, very faded marks.

Joanna and my cousin Sarah came to visit me later that day, and I wished them, "Merry Christmas." They'd bought some finger puppts to play with, which kept falling off my shakey right hand. We didn't attempt the left. I got rather attached to a dragon puppet who I pretended was a morose, pessimistic boy called Beverly. We froze, looking very guilty with our bedecked fingers, as a nurse came in to give me medication.

"What does this say?" Such a fun game.

19. Twiddling My Thumb

It's become a habit; playing with my lifeless thumb. My metacarpals twitch my digits but there's no movement from the phalanges. I've been introduced to ways to open jars and a one-touch kettle, which are life-changing. We've been practising picking things up, drinking etc, and my fingers clench, but I can't really grip yet. I can make my fingers like a Lego hand, but it won't grasp. It's an occupational therapist's job to oversee hands, as well as occupying them, and your whole self too.

The occupational therapist assistant has just resumed doing washing and dressing with me. Whilst that is done every week in the hospital, it's not the norm in the centre I'm in, but it's been started for me now. This is where they facilitate me doing as much of my morning routine as I can, as currently a care assistant needs to help me. When I first came to the centre my shower was one of those heads attached to the wall on a push-button timer, like a locker room shower. I was sat on a commode and had to be turned around to wash my back. Now it's been replaced by a normal hand-held shower head, and a grab-rail has been added so I can practice standing in the shower. It's still on a 30 second push button timer though. I can't have everything.

The occupational therapy assistant is called Becca. Weirdly, we realised we were in the same AS Art class back in sixth form, but hadn't got to know each other. I vaguely remember encouraging her about her art work 5 years ago; now I fully appreciate the irony when we do craft activities again, in wildly different circumstances. In our sessions, I am able to stand and wash myself, dry myself and dress myself (though the boxing boots defeat me). I am still reliant on the commode for toileting and showering, which I can hop onto from my wheelchair no problem, and need to be pushed from my bedroom into the wet room, which is fun.

I have also been doing more cooking assessments, including going in the van to Tesco and buying the ingredients for a butter nut squash curry which I then went back and made. Having a thumb out of action means I still need quite a lot of help with cutting, opening cans etc. as the kitchen is not fully kitted out for one-handed living. Becca also did a microwave assessment with me, to show I can use a microwave safely. I am the only person in the centre who has a room with a microwave, fridge, sink and kettle, so I get to keep my own food, ha ha.

Whilst I twiddle my thumb literally, I no longer do this metaphorically. The amount of things I do with therapists has stepped up, plus there are independent exercises I can do, including using the seated cross-trainer. I await the day when my thumb can twiddle itself.

One of the strangest things happened to me last week. I rolled out of bed. I was having a dream that I was in a swimming class, and my imaginary swim partner and I were keen to prove ourselves. I was in the water, and my partner was standing on the side, encouraging me. We were told to do a roll in the water, so at my partner's urgings, I heaved myself over. The next thing I knew, I felt a horrible drop, and then I was lying ony my back on the floor, completely unharmed. Thanks, fictitous swim partner. After berating myself soundly, I pressed the call-buzzer, which I could easily reach on the table next to me when I sat up. I felt like such a fool.

I got safely back on the bed aided by the simple technique of a person holding me under each arm. Of course, I found the whole thing hilarious, unlike the therapy team. I gather that counts as a 'fall', which is a lot of paperwork. To my embarrassement, the occupational therapist bought me a crash mat the next day. I haven't used it so far.

My food. 

18. Sounds (Reprise)

Now I was left in my own room in the brain injury unit, I was back to hearing all that was going on, and not seeing it. Brain injury only had 8 patients at a time. 3 were in side rooms and 5 on the main ward. Because it was gender-split, and because men always seem to have a higher chance of having a brain injury, they were always in the ward, and women in the side rooms. When they brought me in, I was slightly afraid I was being put in a mental ward and that they would assume something was wrong with my cognition. (I had checked, and my childhood memories, recent memories and my memory of the whole script of The Simpsons Movie remained in tact). So, I implored the person bustling around my room, "I'm not crazy!"
She smiled, "I'll test you in the morning." Little did I know, she was only a health care assistant. (Over the next few weeks, I gradually worked out which uniform denoted which role. I was very proud of myself for working this out; no one told me.)

As I don't like watching TV, my main entertainment was sleeping. (I had a nap most days.) I couldn't read because my eyesight was a bit haywire, by I listened to music in the evenings. I would be waiting for the noises of other people's TVs to die down at night. (Some men had them on quite loud.) One man liked to listen to classical music before bed and at first I couldn't work out where the gentle harp music was coming from. Another man, brought onto the ward after me, had been hit by a car, and was shouting whenever he was touched. I once heard a staff member shriek, "Keep still! We're only trying to clean you, you've done a massive poo!" I found this lack of discretion somewhat amusing. He also kept shouting a woman's name, which I learnt was his daughter. I also learnt he had 2 daughters and 2 sons. I'm so curious as to why he had a favourite. After a week, he stopped shouting and became very normal.

Here for the first time, I was taken into the shower. A health care assistant called Eurica was the first to make the effort, and although a number bothered to, she took me regularly. I was hoisted into a large, supportive shower chair and taken in. We had to be careful not to get water in my mouth, as I was not safe to drink it. Of course, at one point, someone gave me the shower-head and it slipped in my (right) hand, so I sprayed my own face.

That first time Eurica took me in the shower, it took her half an hour just to brush out my hair. It had been washed in intensive care, in blow-up basins designed for people lying down, and plaited, but never brushed. It was quite a fuzz ball. I did joke, "Cut it all off!" but Eurica wouldn't be so easily conquered. She managed it, and plaited my hair in the double french plaits that became my signature hairstyle for a few months.

I had a rather strange visit from the doctor at about 8 am soon after arriving in the ward.  He left the light off because it would save elictricity. In the dim light, he softly exclaimed, "Why did this happen to you?"
I could have said a lot of things in reply looking back. Instead I very meekly answered, "I don't know." He asked me if I drank or did drugs. I said no. I was put down for an MRI.

When the time came, I was carted off in my whole bed.
To move me from my bed to the MRI scanner, they used an inflatable stretcher that blows up beneath you like a swimming pool inflatable, and was extremely fun. I think most people know what an MRI machine looks like. It's a big tube you are slid into. The purpose of the scan was to show the blueprint of my brain and to see a possible cause for the hemorrhage.The results were inconclusive as there was too much swelling. It was recorded I should have a repeat MRI after 3 months.

MRIs sound super clunky and shout lots of unecessary sounds at you. I was in it for about 40 minutes. I knew what an MRI was, but had never had one before, just CT scans. Because the main focus was my brain, my head was nestled in a plastic cuboid case, with a window in the middle for my face. I spent the time imagining I was in an old-fashioned diving suit being plunged deep into the sea, or an astronaut being blasted into space. I know you are supposed to stay very still, so you don't blur the results, but I was waiting so intently for the noise I full-body jumped when it came. I counted time for all the loud blip noises and gun-shot beeping, and fell into a deep trance in my efforts to keep still, holding my teddy's leg tightly. When I was being moved beds, they just left my dragon toy on my belly. I've seen the scan, and don't worry, it doesn't look like I am pregnant with a dragon.

"Can you plait my hair?" : My FAQ for the next few months.

17. How To Walk

A simple, handy, step-by-step guide for your illumination. Please try this at home kids!

First, prepare your mind. Visualise where you want to go and how you'll do it. Get any excess giggling, complusive comments and unecessary questions out of the way. Breathe deeply. Remember, a physio is probably watching (or reading...).

Let's walk along the parallel bars. You can do this along a table, or horizontal bannister, or something. Get your (wheel)chair in the centre of the two bars, or parallel to whatever you're using. If you have breaks put them on, move aside your footplates and unbuckle your seatbelt. Shuffle forward so you're at the edge of your seat. You can't stand when slouched over. Place your feet in a firm stance, at about the width of your shoulders, with your feet straight. Your starting position is what affects the whole stand the most so how you do this bit is crucial.

With your back straight, lean forward and grip the armrest(s) of your (wheel)chair with your hand(s). Make the motions of doing this if one your hands is not fully ship-shape. Whilst in this position, push up from the floor and straighten your knees out. As you're straightening out, fluildly let go of the chair arm(s). It is important to push up from the chair rather than pull yourself up by something in front of you, because pulling isn't functional. When you have some standing balance, then hold onto the bars. You can always sit down and try again if you're too wobbley.

When standing steady, with a hand on either bar, you can take a step forward. Let's say you're moving your left foot first. Make sure your hands are in the right place ahead of you, so that you maintain balance when stepping. Roll your weight onto your right hip. Lift the left leg from the hip, and move your left foot firmly forward, heel first. Look out for your left leg waving around, and don't let your foot cross over your middle-line. That would mess up your whole balance. Keep your stride small for now, just a bit longer than the length of your foot.

As you place your left foot down, shift your weight from the right hip onto your left, and move yourself smoothly forward onto your left with this momentum. You'll probably need to adjust where your hands are as you do this so that you maintain posture. Keep your torso straight and your head up as you move forward, not lurching your body or lunging forward, but with your movement coming from your hips, not your chest. Don't look down, but keep your eyes on the prize (usually a door). Repeat this action until you have made it to the end of the bars.

There you go, you're walking! You can do it, and remember: practice makes perfect!

You can do it if I can!

16. The Funny Voice

I always say I had way too much fun for someone in intensive care. When I was washed in the morning, I used to pretend my feet were much more ticklish than they were so I would have an excuse to laugh. When I was off the ventilator and had the speaking value on, I initially made a terrifying laughing sound. The sound made me laugh, and the more I heard it, the more I laughed. It was a vicious circle. I actually asked Joanna to record it and send it to all my friends as I thought it was so funny. She did record it, but didn't send it to anyone as she didn't want to worry them.

Our youth pastor brought a guitar when he visited me. He sang 'Reckless Love' in the ward. I mouthed along, as I wasn't even going to attempt noise. Everyone's eyes turned in our direction. Joanna said it was funny hearing the covert explanations: 'They're Christians' and comments, "He should go on X-Factor". Another time, I put Joanna on the spot by spelling out 'sing'. She said she did it for me, as heads turned again towards us.

At this time I was having a lot of dribbling problems. I couldn't swallow spit down. As my right hand was becoming more mobile, I was given my own 'yanker' (saliva-ejector), to suck out my own spit. At first, Joanna did this for me, but as I kept dribbling on purpose every time she'd just cleaned me up, I got to do it. My dad said I looked like I was sucking on it like a shishah-pipe. The image of myself lying in a 19th century opium den does make me smile ironically. I used to point the yanker at people and make kissing noises, or offer it round. (In my head I was saying "bang bang".) Sadly, no one opted for my little sucky-tue. I kept wondering whether they use it to suck up crumbs like a mini vacuum-cleaner.

A physio called Jacob brought in a few OTs and I had my first go at sitting on the edge of the bed. Here I coined my famous 'Whooah' noises as I lurched and whooahed and laughed at myself the whole time. We did this a few times that week, and Jacob really appreciated how lightly I took it. A speech therapist called Charlotte bought an iPad and I managed to stab out my name, proving I could do that much at least.

Then came the news that I was moving out into the Brain Injury ward. In ICU they had ECG stickers stuck on my chest 24/7 as standard. They measure heart rate, and all my stats were suspiciously consistent. Once I was weaned off the ventilator, I didn't need to be in ICU.  My bed was moved to a new space in the ward for the last night I was there. Brilliant entertainment was provided by Joanna and my nurse, as they tried to move all my cards we had hanging up. Imagine two people trying to move a full line of washing by holding it at either end. I could only lie there in front of the shambles, saying I didn't need them up for one night, but the nurse-in-charge insisted it was doable.

Later that evening, I was using my voice to try to say something but Joanna and my dad simply couldn't get it. They got me to spell it out on the letter board. It was that all-important, multi-purpose word, "wahoo". Then some friends came to visit, and one of them fainted. All in all, not a bad place to do so. I hope it wasn't my voice.

The next morning, Marilyn was nursing the person in the bed next to me. She had been off for a week for half-term, so was amazed by how quickly I'd progresed. I laughed about my funny voice. Then my nurse-of-about-4-hours dropped me off into a side room in Brain Injury, where you don't need one-on-one nursing. Sad, as I really liked her. Shame that now I could talk, I didn't have someone with me to talk to. I admit I did shed a few tears that night. Marilyn came to say goodbye to me the next night. I moved on October 22nd, a month exactly to the day since I had been admitted to hospital.

It kept growing.

15. Politics

There are some perks of being in a wheelchair. You are completely excused from awkward mingling, seeing as you'll run over everyone's feet in a crowded room, and you are at elbow height anyway. (This is a clear problem as you're suddenly a child again, looking up at the adults talking about things you don't understand again.) Mum says people smile at you and get out the way if you're pushing a wheelchair. (Not so much if you're pushing a double-buggy.) I find the scramble to clear the way for you in a café is gratifying, watching people's haste to show they are wheelchair-friendly. Large retailers in new buildings have accessible tills you can skip the queues to use.

The downsides of getting around in a wheelchair are obvious. I'll leave that up to the imagination. One I didn't anticipate is that you are stuck listening to the conversation of the person pushing you, way above your head. I've learnt to just ask for a new pusher when the going gets boring. At least I have a little companion with me all the time. You can decide if that's a good or bad thing.

I can scoot myself around using my right-hand on the wheel and my right-foot as a rudder, so I can get around the centre no problem. This isn't sustainable for long distances however, so I am pushed around a lot at the weekend. (And boy do I cringe when someone painfully kicks their foot against the wheelchair!) Other people in the centre can self-propel with both arms and we form a right conga-line going down the corridor. I'm pretty nifty now at moving around, something I was actively discouraged from doing at the hospital, as advice about scooting with one arm and a leg is distinctly lukewarm. Bad in the long run? No one knows. When a therapist would catch me scooting in the ward (everyday), I began to say, it's good for my mental health. It was an amusing few months of constantly playing 'What's the time, Mr Wolf?'

My walking is slowly getting more controled. Lots of practising walking between the parallel bars. We did some walking practice in the corridor, and loads of staff started congratulating me, saying 'I hear you've been walking'. I pointed out I have been walking for a few months now. I've also been sleeping at home every weekend, and my dad took me out one evening to vote in our local elections.

One of the things that bothers me (that doesn't affect the staff), is that the people who live in my centre are called 'service-users'. Now, I know this term is standard fare in support systems, but it's a bit detached seeing as we live there. Someone mentioned that 'resident' sounds like we're in an old people's home, but quite a few people are here very long term, and won't leave care, so how old d'you have to be until you achieve resident status? I've expressed concerns about this. I've become quite vocal about things that annoy me, (for example, the fridge was in my way). Maybe I should start a residents' union.

We're not there yet.

14. The Elephant Tube In The Room

Then Marilyn was my nurse. She used to play Premier Praise Christian radio and I would mouth the words to the songs. I know you just need your heart to praise, not your voice. I considered raising my hand in worship, which I could just about do now. (My first nose scratch was amazing.) However, I didn't want to look like I was asking for help. An advert used to come on for male counselling which would say "Are you alone? Can't talk to anyone?" I would nod along to Joanna. Marilyn and I attempted conversation through the letter board and made each other laugh. Joanna brought in my laptop one day and asked if I wanted to hear one of my playlists. I straight away spelt out 'Jesus Jamz' (Cool, I know). (YouTube/Spotify). Marilyn was jamming along, and said she needed a copy of this playlist. She was my instant fave. 6 months later, she found me on Facebook.

Once, I spelt out "I'm scared," and she pulled a face, non-plussed.
"You're scared?"
I finished my sentence, "Of dribbling." She assured me I wasn't. My sensations were messed up, so my whole left side was tingling. It was like there was a line running down my face, dividing the tingly side and the non-tingly side. It was like I was being patted by lots of tiny hands. My face felt wet sometimes, and sometimes it felt like I was my toes were crossed. I'm assuming this fieeling was my nerves going haywire, I don't know. I never bothered adding this to the list of all the things that felt wrong when I talked to the doctors.  It went away gradually after 3 months.

It all came to a head one night when Marilyn was my nurse. I coughed my traccy out. I had to be repositioned every few hours, to avoid pressure-sores, and that required multiple people putting a slidey sheet under me to move me about the bed. (A nurse would shout out, "Annnyone free for a roll?" like a market hawker.) It was during a move like this one, at 3am, that I coughed a bit too hard. The tracheostomy (just a small plastic tube stuck through your neck) is connected from the wind pipe (trachea) to a ventilator by a ridged, opaque tube about the width of a nose, or a small egg, called 'elephant tubing.' This tube was in danger of popping out whenever I was moved,  or I hacked too hard. That night, I had a bout of full-bodied, fly-off-the-bed into-the-bed-rails kind of coughing, and the tube was no match for me this time.

The attachments flew off and a collective "Ooo" went up, (well, I thought it) as a yolky globule of phlem shot out of the hole in my neck. The night-shift doctor who was camped out that night in ICU was called straight away. I found that, actually I was able to breathe okay. Half of me was thinking, "Oh no, that's not good," and another half was yelling, "Yoooo! Awesome!" Talk about the mindset of an 8 year old. In no time the doctor was putting a new traccy in. (He sewed it in this time). Quite a few nurses were there, and Marilyn was being reassuring. I stayed calm and focused on my breathing, as I knew that was the best advice. Then a portable x-ray machine had to be called out. All in all I didn't get much sleep.

These days I was being visited by a physio called Emily, whose job it was to wean me off the breathing machine. She once gave me her phone and earphones so I could listen to music, and it was worship song medleys. She started me on spells with the traccy not plugged into the machine and just covered with an oxygen mask. As my time without the ventilator increased, I was taken on more walks outside, and saw the autumn leaves. I kept playing a game with Joanna were I would make the 'leaves' fall: a real leaf; the teddy;  her arm. I didn't want to be too annoying, but I did play fetch with the teddy a bit (I threw it, Joanna fetched it). Hilarious.

There came the day where Emily brought a small cap (speaking valve) for the tracheostomy. This cap allowed some air flow out of my mouth, as well as through the tube, so I could talk a little bit with it on. She warned me my voice would sound awful after having had a traccy in. She tried it on me, and I prepared myself, ready to come out singing. I just coughed terribly and shot the cap off millimetres from Emily's face. Eventually, we got the cap to stay on, and I to make a growling noise, trying to say something. My family strained to hear. By the end of the day, they got it: 'dog'. That was my first word as a baby, and I chose it to be my new first word now.

Traccy.

13. We're Not Twins

I was talking to a friend about our experiences of disability and Christianity after discussing the BBC's article 'Stop Trying To 'Heal' Me'. When I was in church on Sunday, someone did come over and pray for my hand uninvited. To be honest, I don't mind being prayed for, but it was a bit of startling, especially as I don't go to church to focus on myself. I probably would have been annoyed if my hand had always been inanimate, but it is getting better. As they say at Tesco's, 'Every little helps'. I am actually relieved it hasn't been miraculously healed, as I feel like God is showing me the process because he knows I can handle it. Suffering produces character and all that. I'm sure I'd feel different if I was in pain, but that was only for a few weeks months ago.

In church, a 3 year old wondered past and stopped to lean on my wheelchair's arm-table.
"I like this! What's it for?"
"For my arm"
"Why?"
"It doesn't work."
"Why?"
Good question. It's what we're all wondering.

My arm has been getting a lot stronger. My fingers aren't strong enough to grasp and flex out, but they can curl in and out a bit. My dad restrung an old guitar to be left handed so my right hand can start learning chords, and left hand can learn to strum. I can't really make proper sounds yet, but, early days.

Today I took part in an aerobics-style balance class on our gym. I find normal exercise classes hard to take seriously, so taking part with 5 untalkative 40/50 year old men, with a very bubbly instructor, whilst your attempts to do the moves are laughable, is undeniably surreal. I know this is what it takes to strengthen my arm, but I wasn't prepared for how amusing it would be. One of the men kept playing the 'Safety Dance' song. It's been in my head all day.

I was told to go and get myself some sturdy shoes with good ankle support. We went to the shop and I got myself some boxing boots. We have applied for a blue badge but haven't even got it yet. Joanna and I had our first experience of the pains of traveling with a wheelchair as we waited in the drizzle by the only free disabled parking space in a packed car park, so my dad could pull up the car to load in the wheelchair. Of course, someone swooped in without a blue badge, and a gaggle of excitable women clambered out and dashed into Primark, in front of our open mouths.

In the shop the quiet cashier had burst out with, "Are you twins?" We laughed resignedly and my dad explained that Joanna and I get that a lot. Possibly by every staff member who has met us in the last year. The other day when Joanna was leaving someone stared at her blankly and after a while said, "You're leaving?" When she realised that I wasn't, in fact, walking miraculously out, she exclaimed loudly for a while then said, "You look too similar!" I mean, how dare we not be twins.

Ba-ding!