53. Can Everyone Be Upstanding

By March, I was being taken on little walks in the gym. I would need a person on each side, usually Rachel and Alison, and originally someone would have to place my left foot for me and bend my knee, as I couldn't do that at first. My balance was the trucky thing, my torso was very unstable. I also did a few unsupported stands, where I usually shot myself in the foot by talking, making myself laugh, then wobbling. When I said "wooOaAahH!" it meant I was loosing balance. The physios become accustomed to the noise, but I didn't ever fall. I made a helpful 'get on ya feet' (YouTube/Spotify) that was actually more of a hindrance, as the juxtaposition of songs made me laugh and loose balance.

There was one night where I had one awful lurching wobble as I stood. If someone hadn't been with me, I would have fallen. I swayed way too far forward as I stood up, and painfully remembered I couldn't put out my left hand to steady myself. The health care assistant I was with yelled, "what are you DOING?!" and batted me back. I felt more guilty for putting them in a tight spot, rather than afraid for myself. It was the staff member's reaction that shook me more than anything, though I'll never forget the horrible plunging dread that doused me in that sickening sway.

There was some fun kit in the gym I got to play with use, like a treadmill with a harness, to hold the patient's weight, which looked like a baby bouncer. We only tried this once, but Rachel deemed the flashing heart on the display far too distracting for me, ("look, I've got 100 lives!"). There was also a leg bike you could strap your feet into, which I started using every evening with my family. Some kit I didn't think was fun was a giant connect four taller than me (in a wheelchair). I never thought connect four was that fun a game, but it is a therapy favourite. However, a friend did walk in to see me and 3 others playing volleyball with the connect four as a net, and a blown-up plastic glove as a ball. It was all quite laughable as none of us were very mobile, most could only use one arm, and it was really a chance for some physios to get all competitive and show off.

In all this time, there was one day I felt a bit tired early, and got into bed and fell asleep at 5:30. I was woken 10 minutes later, to my dad and sister sitting worriedly either side of me, with someone taking my blood pressure. The nurse had said it was unusual behaviour for me, so they told someone to do observations. I was just annoyed that I couldn't get a break. That was my one nap in neuro rehab. Ridiculous; 'oh, they're sleepy, let's wake them up to check why they're sleepy!'

I think my favourite moment is something the ward sister did. I used to get given an injection everyday. Blood thinners. Given to everyone not mobile to protect from DVT. One time, the ward sister was coming up to give me the injection and with a straight face, asked my sister where she would like the needle. Took me a second to realise she was making a joke about how similar we looked. (I never mentioned this lovely daily injection before.)

In March, Lindsay had to leave. Her job post meant she rotated every 6 months. I was sad. Before she left, Lindsay, Kerri and I made cookies together. The neighbouring stroke ward had a therapy kitchen,  so we went in there. My mum bought in ingredients for us. We were very enthusiastic. It went terribly. I'm going to blame the flour we used, but the blobs of dough all ran into each other and congealed into one crispy rectangle, that we scraped into a bowl, and returned to our ward, shame-facedly to offer out our flaky sticky mound. It did taste very nice, just didn't look it. No one even made the joke about cookies crumbling.

I'm laughing because my hand went in the mix for the photo.

52. Progress Report

I've decided I'm going to end this blog when I move to university. The 24th. The story of the hospital, and my time in rehabilitation has nearly come to an end. I've set up an email I'm going to use for updates, where maybe once every two weeks I'll give an update of how I'm doing in Sheffield. Please email shewillwalk@gmail.com if you would like to receive updates from me, and I'll put together a mailing list. I know I'll still have walking progress updates, and more rookie comments on discovering disability, but I know I'll have less time to write the blog. I also predict my weeks will become very predictable. I mean, who's to say I won't just email everyone my evolving thoughts on English Literature, but I guess there's only so much I can say about university that you don't know.

We had a staffing change at my centre, and were without a neuro-pyschologist for some time. We've got a new one, called Louise, and she has completed a full report on me. In the earlier report made on me after leaving the hospital, neuro-pyschological assessment was recommended. This is standard for brain injuries, and all the more relevant for someone returning to university. I've just completed the testing over a few sessions with Louise. The results indicate that my functions even out as above average, with strengths in verbal reasoning, and weaknesses in processing speed. Along with difficulty with my fine motor skills, this means I'm finding my on-the-spot, in-my-head problem solving a little slower. I think this result is fair enough, and it's no bad thing if I need to take my time more. That's what I was always being told at school anyway.

I've been recording my voice sporadically over the last months to track my progress. Here is a recording of me singing 'Amazing Grace in April', and one of me singing 'Amazing Grace in September'. Is there a positive change? Simone, the speech therapists, recorded me very early on reading out 'The Jabberwocky'. I still need to hear the recording again. I have also been practising my writing nearly everyday for the past 6 months. I've attached a photo of all the pages from the start of every month.

On Thursday, I completed a walking tour of the building with Dee, the physiotherapist. We went down a corridor, up some stairs, along a corridor, back down some stairs, and back to the gym. For some of this she was supporting me at the side, at other times she was just supporting my torso. I know at this stage that what I really need to work on is keeping my head up and my shoulders level. I'm reading 'Frankenstein' at the moment, for my course, and can't help relating to the hulking 'creature'. I feel like my walking is a bit zombie-like at the moment. It's my big aim for it not to be. It's good progress with the walking though. Dee told me to hold off buying a walking frame for the time being.

On Wednesday, Becca (occupational therapy assistant) took me shopping using the bus. In theory, buses are accessible. In practice, I found it very challenging to manoeuvre my electric wheelchair through the narrow walkway in the bus. I had my disability concession bus card, so could ride for free. (The only other time I took a bus was before I had this card. The bus driver let me on for free. I was so chuffed that the person I was with said, "have you never been on a bus before?") I asked Becca to take me to the shops because I had thought I would use the bus in Sheffield. Now I've faced humiliating myself in the bus in front of all the other passengers, I've rather gone off the idea. Good job Becca was with me; I didn't do anything too embarrassing but was so clearly a bit incompetent. No way do I want to face that alone.

Becca has also given me the all clear for getting myself up independently in the mornings. I find this a relief more than anything. It's been a year of allowing myself to be seen naked, which I haven't found too discomforting, but I  have never liked it. I'm glad I won't need assistance with washing when I go to university.

One track mind?

51. Splish Splash

Rachel talked to me about where I might go next. You can only be in the hospital neuro wards for a max of 6 months. I said I wanted to return to uni, but we had to make plans in the meantime. I agreed to going to slow-stream rehab. Commissoners fund places, based on the assessments made by more than one place, and a lengthy report by Rachel pleading my case. I was visited by a team from the centre where I am now, in Leicester, and a team from the centre in Loughborough. The teams assess you and put in how much they judge it will cost to keep you. Then the commissioners decide which is cheaper. Whilst this process was happening in February, I didn't know where I'd be going. I believed wherever I went after the hospital, it would be the right place.

In terms of speech therapy, and my eating, I didn't really need to be seen anymore. I could eat normally, and quite enjoyed ordering off the many-choiced hospital menu. They were all microwave meals, but because of Leicester's diversity, there were lots of different options, and they weren't half bad. As well as typical British options, there were halal curries, veggie curries, Caribbean meals, and kosher meals. They weren't very big portions, but that suited me fine, and the large amount of choice stopped me getting too bored.

One of the catering staff used to come round in the mornings and afternoons and record on an iPad what you wanted to eat later. You would then have this re-heated in the ward at mealtimes. The kosher and Carribbean meals were separate from the normal paper menu, but I knew to ask for them. The meat was better quality though, probably because they were less common. Kosher was rarest so I think they were a bit panicked when I asked for it. Someone told me they'd got the kosher meals from another hospital because they had been out of stock, so I stopped ordering it. Didn't want all that effort for a meal I didn't even require.

Katie, the speech therapist, still used to see me though to work more on my speech. We did some vocal sound excercises, to combat my slurring, monotone speech (dysarthria). I was once given what looked like a navy plastic spoon to hold in my mouth to press down on to strengthen my tongue (this was before I was on a normal diet). A friend came to visit me as I was sat with this spoon in my mouth. After Christmas I was introduced to bubbling. This was where you get a straw, and blow bubbles in water, to blow against resistance. You could move on to humming through the straw, to practise controlling the sound through the water. I was delighted. I mean, all your life you're told not to do that.

Then, I got put down to do hydrotherapy on a Tuesday morning. This was right after breakfast club with the occupational therapists (no one got the film reference!), so it was a double fun morning. The physios used to take me and 2 other patients to the hospital's small hydropool (a hydropool is heated warmer than a normal pool).  I had to be dunked in using the ceiling hoist as I couldn't use the steps. I found this hoist rather fun; it went quite high, I felt like an actor being wenched in a harness for a musical.  Here in the water I could practise floating, to try and encourage my right side to relax and stop kicking in and overcompensating for the weaker left side. I also practised walking, with the water holding my body-weight. I found this a challenge because my left leg was much more buoyant, with its lack of forceful movement, so my foot kept floating as I tried to place it.

Rachel helped by walking in the water with me, alongside a physio called Alison. Because I couldn't float on my back alone, I had to rest my head in someone's shoulder, whilst someone else helped my feet. Physio student Becky came in with us, and therapy assistant Kerri had to wait at the poolside. The other physios would often come and go. Soon the other patients went home, so there were weeks of just me in the pool. Not that I messed around more with all that attention. I used to insist I had my splash time before and after being serious, to get it out the way. The speech therapist had told me to practise bubbling water, I said. Also, I did not know if I'd be able to go swimming when I left the hospital, so I had to get my fun in now. We played with any inflatables we found at the poolside as well, and I made a Disney playlist. We knew how to have a good time, but we did work too!

Handstand!

50. 23

This Friday was my 23rd birthday. My friends Joe and Anna came down from Sheffield for the weekend. Because Anna will be living with me at university, they met my therapists. They talked about the assistance I will need in my routines, and her practising walking with me. I'll probably have to get a light-weight walker/lean-on zimmer frame for the job. Dad took Joe, Anna and me home. Joe was immediately roped into helping dad take our broken washing to the tip, then he and Anna made a cake for that evening. We then took this cake to my godmother's,  who also has the same birthday as me, and we had a family/ friends meal together.

On Saturday, I had a special birthday treat from the NHS; an MRI scan! At 8:00, I was the first appointment of the day. This was the follow-up to my last scan in January, so I did want it. To be honest, I hadn't slept that well the night before, so being asked to lie in silence for 45 minutes wasn't really a big trial. Yes, it was incredibly noisy, all that beeping and knocking, but I wasn't too bothered.

Later that day, I'd invited about 20 young people to join me at my house for a few hours. These were peers from school and my gap year, flatmates and coursemates, my cousins and students from my church. I thought hard about who to invite, but trusted everyone to be grown up enough to socialise amongst each other. We'd got mario kart and bananagrams in the front room, the garden opened up, and we converted mum's study/my downstairs bedroom into a 'cosy room'. Joe and Anna were sent to the shops, helped prepare lunch, and made the same cake all over again. Invaluable.

It all worked really well! We had cake together in the garden, and I walked out to join everyone. People said "speech!" but let's be real, I'd have probably just cried. It felt like too much of a milestone, and I felt so honoured by all the people who had travelled to see me. Some had seen me last in intensive care, and I hadn't seen them all year. It really was amazing how so many rallied to my call. I'll be seeing some again in Sheffield soon, as they also return (from year-abroads) to complete final year.

I've got two more weeks here in my centre. I will be relieved to finish living in a care home, and to be around students again. Looking back, I've learnt a lot about neurology, and interacting with all different kinds of people, but I've learnt it the hard way. Amongst the important lessons learned, about taking people as they are, and just how paradoxical and socially awkward care is, I've seen the best and the worst of the system. However, I know I've made amazing progress here, and the support I've been given has been so rewarding. Two more weeks left to really make the most of everything on offer.

EDIT: I also had all my hair shaved off to a number 2. Because I donated the hair to the Little Princess Charity, the barber I went to did it for free. It was 46cm.

Nearly everyone!

49. You Can't Sit With Us

Now I could use a commode, I could start having showers everyday. (I used to be bed washed, and hoisted into a shower chair occasionally.) Initially, someone had to help me in the shower, but soon I could just be left to it. The same as in the toilets, I had to pull the red buzzer string when I was done. It was the same red cord that you get in disabled loos. I've always wanted to pull that. From 8:00am, staff had to get all the patients breakfasted and do a drugs round, then washed. Physios started visiting whoever was ready at 9:00am. The night staff used help out the day staff by getting a few people washed from 6:00am onwards, by lucky dip.

To beat the shower queues, I usually was the sole eager volunteer, and was always ready for breakfast. Breakfast was served by the housekeepers in the dayroom. I didn't really like joining all the other patients all rumpled in my pyjamas, so liked being made ready early. It was the same routine every morning. Start of shift, do the observations (blood pressure, heart rate, temperature, "are you in any pain?"). I said to one nurse as he gave me the same medication yet again how boring it must be. He agreed with me. I wrote a poem about it called 'Toast and Drugs'.

I started to get a few problems which needed addressing. My shoulder became quite weak as the weight of my arm pulled the ball of the bone a bit out of the socket (subluxed), so I was given a shoulder brace. Lindsay took me to an occupational therapy workshop (looked like a wood tech classroom) to make me a hand splint, to keep my fingers stretched out, and my wrist in a neutral position. (When asked what colour velcro straps I wanted, I chose all the colours.) My ankle started swelling because of gravity and the lack of pressure being put on it, so I was prescribed TEDs  (compression stockings). I definitely felt a bit held together.

I went with Lindsay to get properly measured for a wheelchair, and then Hermes  arrived! The NHS has a contract with a company to buy every patient a wheelchair. The therapists said going to an appointment was a great idea, because it was the best chair they'd had. It was done to my specific measurements as I found the standard ones the hospital had too short for me. I started taking trips out to the cinema, a friend's house for lunch, home from the weekend. We'd put a grab-rail in our downstairs toilet. I started my routine of going home for the weekends, and having therapy during the week.

Then one day, it was ruled I couldn't sit in my spot in the corridor. Positioned in-between the nurses'station and therapists' office, I could overhear too much confidential information. Someone moved me, and I burst into tears. Besides crying in pain those first few weeks in intensive care, I'd never felt the urge to cry in the hospital. In this very public ward, I didn't want to cry in my bay in front of the 3 other patients there. (Well, I didn't want to cry anywhere.) Not knowing where to go, I just stayed in the doorway of the bay, very visibly crying my eyes out in front of everyone. No one could tell what was wrong; I certainly didn't have the coherence the tell them. It was a busy morning. I could hear randomly passing admin staff helpfully whisper "she's crying!" I was hiding behind tissues, not knowing what to do.

It was a vicious circle, as I cried in embarrassment that everyone could see me, and then were being kind to me, which made me cry more. I felt a bit betrayed by the poor management of this decision, that I hadn't been given any prior warning. I also felt helpless because they were right; I did overhear things I shouldn't. I knew I shouldn't sit there, but the alternative was to sit by my bed all day in silence, with the TV driving me mad. We didn't chat much in my bay. We were all completely different ages, with nothing in common. It also felt very unfair because I overheard confidential information in the bay too, when the doctor did a ward round, and staff chat about issues. Not to mention knowing everyone's embarrassing toileting information.

After a good half an hour, by which point I'd moved onto sobbing into a towel, Rachel came and took me to the retreat room. Maybe it went on for so long as it was my first big cry. I hadn't realised I loved interacting with the staff, being greeted and talked to throughout the day. It was all I had to feel welcome in the ward. Yes, I had loads of great visitors, and my family came every evening, but I liked the staff, and liked getting to know them. I worked out with the nursing team that I could sit out in the afternoons, when it was a bit quieter. However, I couldn't forget that lurching feeling, when the patient / professional divide gaped beneath me.

I decided to dress up as a 'love banana' on Valentine's Day. Why not?

48. Grow

Lately, I've been thinking about time, and growth. I was looking at the plant on my window sill. When Marie the OT gave it to me back in February at the hospital, it was about 2-3 inches tall. Now it's about 7-8 inches tall. Time has let it grow, but it probably won't get much bigger because I don't intend to re-pot it. This reminds me of people. A child will keep growing until it reaches its physical height limit, then will stop. We are constrained by our pots, our bodies. I was reading 2 Corinthians 15:37-38, and it says this:

"When you sow, you do not plant the body that will be, but just a seed, perhaps of wheat or of something else. But God gives it a body as he has determined, and to each kind of seed he gives its own body."

Being in physical rehab, it's reassuring to be reminded that God sets the limits of our bodies, but is also the one who makes us grow in the first place. With brain injuries, that throws up all kinds of theological issues. Bodies are limited in ways they weren't designed to be. It's very humbling to know I am growing, in ways others at my centre aren't. And it's hard to say whether God is present in growth or not, because many people recover from terrible injuries without relying on God. We can't ever truly know God's plan. All I do know is, knowledge of God stopped me being afraid.

That's not just bravado, it's that I know "suffering produces perseverance; perseverance, character; and character, hope" (Romans 5:3-5). That hope felt very real to me. Having God as the most important part of my identity has meant all the other parts of my identity that I have lost, don't seem so bad. Yes, I couldn't talk, couldn't sing, couldn't play guitar, couldn't draw, couldn't read, couldn't run, jump, dance etc, but I knew God loved me despite all that. All those things could be stripped away, and I was still alright with God. My school grades don't matter on bit now! I was utterly physically helpless, but spiritualy, I was untouched. I keep thinking back to what it felt like, lying in intensive care, a bit bemused at how things had turned out for me, that I was still alive. Why was that? Why was it part of God's plan to let me live? I felt triumphant; I was kept alive! I already had felt the joy of God in me for years; now it roared.

For me, a lot of this year has been about taking a back seat, and recovering. It's like someone pressed the pause button on my life, then pressed play for it to resume in slow motion. I feel like the miracle isn't my physical recovery so much as the fact that my mental health has been okay. I've enjoyed myself a lot, met tons of new people, and actually grown in confidence. I can't deny that sometimes I have been very sad, but I have rejected any feelings of self-pity, or rebellion towards God. That would have felt petty, and ugly to me. I do get angry, but at the imperfections of the world, not at my situation. Ignorance and indifference still infuriate me more than my own physical discomfort.

I'm reminded of an EP of 4 songs I put together last year. The songs are actually based on post-anything sadness (job, uni, relationship, time overseas, childhood), and not so much on anything I was feeling at the time. The EP, called 'Songs for Stay-Home Sadness', goes through an emotional journey through purposelessness to end with the resolution to embrace life as it is. It acknowledges that sometimes the boring lulls in our life are often a chance to rest and recuperate. I always want things to happen now, to move straight on to the next thing, to be at the finish line without the hard work first, for something exciting to happen, but then I saw that the drags were actually time to grow. I made the album cover a picture of a plant shoot, as a reminder that something new is always able to grow.

47. A(commode)ation

By the new year, the funny poo stories ended, by the way. I started wearing actual clothes, instead of easily replaced pyjamas, as I was not incontinent. Except one time a nurse gave me a few too many laxatives and I pooed myself. Mild laxatives were freely offered in the mornings, as when you're not very mobile your gut isn't churned up by daily activity, so constipation is a common hospital problem. I can't express enough how eye-widening it feels to poo yourself with absolutely no warning. But apart from that one time, physically, my bowels were fine. Socially, it was still excruciating having someone just waiting for you to finish doing your business on a bedpan, and then if that business was commented on.

Rachel had a physio student assigned to her, so I started to be visited by a double-act. Rachel would pause to explain some muscle thing to Becky, so I couldn't help but learn too. Becky used to come and do work with me on the plinths in the gym. I remember rolling onto my front for the first time and not being able to roll back. Stuck in this prone position, I laughed so hard I dribbled all over the plinth. We once did another excercise involving Rachel wrapping a sheet around me and pulling my hips. I'm not sure what Becky was doing, or even remember the point of the excercise (balance? Weight -shifting?). All I know is, I was standing with Rachel sitting on the plinth behind me, and I kept being pulled into her lap. Very bonding.

We had been working on me wiggling onto the plinth using a banana board for a while, until I was finally officially allowed to banana board with everyone. Weirdly, the banana board was GREEN. It was kind of lozange-shaped, but a bit curved, like a chubby boomerang. The goal was, to place the board between chair and destination, and calmly bump across the board in little squat-and-swivel motions. I tended to throw myself across the gap, board flying out of place. No matter how hard I tried, the board slipped and slid, and I looked like I was in a hurry. Never graceful, but I got there.

Now I could get onto one, I could start to use commodes. With the banana board making a bridge between wheelchair and commode, I could hop over. This was hardly smooth, but meant I could be wheeled over the toilet. No more bedpans. I did have some trouble initially with getting my trousers down, but soon had the confidence to stand up holding onto a grab-rail. I found being pulled along on the commode quite fun, and would take the chance to say, "weeeee!" I loved it when the staff played along and made the ride more shakey. Gotta get those kicks somewhere. I couldn't find a video of people messing around with commodes (just so!), but you get the idea. I was reminded of the 2012 London Olympics opening ceremony's tribute to the NHS. Love to see staff enjoying themselves.

Now I could shuffle myself around, we practised transfering into a car. The first time we attempted it, I tried to get into Sarah's car. It didn't go well. I ended up stuck, giving Lindsay a standing hug and not knowing what to do next, as Rachel laughed her head off. I was trying not to be too debilitated by my own laughter as Lindsay was finding the predicament of being stuck as my sole support quite stressful. Another time, a few weeks later, Rachel came and tried banana boarding with me into my dad's car. It was a success, and meant a home visit was soon planned.

Homes had to be assessed by  an occupational therapist and a physiotherapist, so Lindsay and Rachel, along with student Becky, took me by taxi to my house. They saw how the wheelchair got in the house, and advised us to put a grab-rail in the downstairs toilet. Our house actually had very few changes to be made. I could banana board onto the sofa, or even just throw myself across it. Going home was not a big emotional achievement for me. I guess I was away during my gap year, and when I was at uni. But then again, I've never been really attached to the houses I've lived in. I wrote a poem at the time about my (lack of) feelings associated with the home visit, called 'Going Home.' From that point on, the therapists gave me the all clear to go home at the weekends.

Andrew looks on as Elizabeth hits the sofa and dies. Rachel rests a sad hand next to her inert body, thinking of all the paperwork she will have to fill in.