Friday, September 27, 2019

Epilogue. Goodbye and Thank You For Reading My Blog

My dad said this should be called an 'epi-blog.' it certainly has been a bit of an epic blog. A lot has happened. Understatement. I've put together a video of the last 9 months showing my progress that I've just titled it 'How To Walk'.* I've got physiotherapy sessions booked in for the term, and have had 2 already. Just because I'll be studying now doesn't mean I'll loose my focus!

Obviously, a big thank you goes out to everyone who thought about me, prayed for me, visited me, sent me messages, as well as those who actually supported me and physioed me! All I can give is my adoration and any entertainment factor I might have. I was never expecting to make so many good friends.

I think back to when my family went to Wales in the summer, and walked along by the sea. It strikes me that I feel like I have been plunged into deep waters with weighted feet, and am slowly paddling my way back up. Lying in intensive care on breathing through a ventilator looking at the lights did feel a bit like being underwater. I'm reminded of one of the first songs I ever wrote, called 'Walk on Water.' I believe in light more than ever.


*EDIT FROM FUTURE LIZ: I've made this video private now because it's over a year old now and I don't really like it anymore. It feels quite ableist and like that whole genre of inspiring disabled person person video I want to avoid.

Tuesday, September 24, 2019

56. Joy

I left my centre today with plenty of planning and warning. There was no tearful parting. (Except one of the other residents' partner gave me a chocolate orange, and said she awaits the day her partner walks out too. That made us both well up.) Last night, another of the residents was annoyed at me for some unknown reason, and threw a (lukewarm) mug of tea over me. Great way to say goodbye. I gave some plants to the staff to say thank you for all their hard work. Many came to wish me well. I walked down the stairs and out the front door with Becca, doing my best to walk upright without holding her hand. 

I have made a list of all my little victories from the last 6 months:
- I could open my bedroom door.
- I haven't had to press my buzzer since I was OKed to use the toilet on my own (except one time I spilled popcorn all over the floor and had to ask for help clearing it up).
- Have only smashed ONE glass (genuinely surprised).
- Can stand and touch my toes.
- Can get up from the floor (not that I'm on it much).
- I didn't steal anything. (Despite my repeated threats to steal the velcroed wall pictures in the corridor. I tore one down, a.k.a. "stole" one whilst walking down that corridor. The physio wasn't impressed. I didn't even steal a company-branded mug.)

I feel like I've done a nursing degree. A year out in the medical industry. If this is too much of a stretch, I deserve a qualification in sports science at least. Strange that my brain has taken a lot of hits, but also learned a lot. I can now get speak hospital. A language I never knew I'd need. People have asked me, and no, I haven't been inspired to take up a medical/therapy career. Not creative enough for me. I'm an ideas person really. As much as I am now in a position to empathise with patients. Maybe a bit too much.

It feels very freeing to be out in the real world again. I had a doctor's appointment in the afternoon, and it just so happened I was allocated a university health service GP who went to my church, visited me in neuro intensive care, and has been following my progress since. We discussed medication, and how I'm planning to wean myself off. My dad helped me move all my stuff into my room, and I dotted plants all around the kitchen. I met a flatmate from Thailand, and my dad and I had a meal out with my friend Anna and her parents.

In 2 Corinthians 12:9, Paul writes that God says "My grace is sufficient for you, for my power is made perfect in weakness." I have found a surprising amount of joy in being physically weak this year. I just completely didn't expect weakness to mean actual left-sided weakness. The helplessness takes my breath away, and all I can do is laugh at it. Literally laugh on the face of danger. It takes its power away from it, and gives you a weird kind of power. People can never predict that response either. No one expects you to laugh as you flop over.

At the end of it all, all I can feel is that same joy that kept me company in my intensive care bed, that tells my body I will walk again, and that sings for me when my mouth cannot. This blog started with boredom. It's only fitting it ends with joy. I was kept alive for a reason. I'm joyful.

Email shewillwalk@gmail.com to get updates on my progress next.

Graduating rehab.

Monday, September 23, 2019

55. End. Begin. All The Same

Now Lindsay was gone, my timetable was even sparser than usual. I still saw Kerri, but we didn't do washing and dressing together anymore. A new occupational therapist rotated into our ward, but the only session I had with her was led by Sarah, who had me standing in the shower for the first time. I still saw Rachel, or another physio, nearly every day. Rachel's student Becky, had also gone. I would still sit out in the corridor, trying to hide the fact that I was slowly calcifying. I tried not to show how bored I was most of the time. It was just the nature of hospital; there was nothing anyone could do about it, no need to wallow and guilt trip people. (Yes, I also had lots of great visitors, which is more than some.)

It was on one such day like this, when I'd had no sessions that day, when all of a sudden, I broke. I'd actually been holding back tears of boredom/frustration, when the nurse in charge of getting people off the ward popped up behind me, and said the commissioners had decided, and I could move to the rehab centre in Leicester in 2 days time. The bubble burst, and suddenly I couldn't stop crying. The nurse tried to console me, saying everyone will be nice, and it would be a great chance for me, and it was a big step blah blah blah. I knew all that stuff, and believed people would like me and I'd settle in and make progress. I wasn't scared or anxious, like I presumed she thought. There were just so many people I wouldn't get to say goodbye to, or dreaded saying goodbye to.

Luckily, Rachel was standing right next to us, and sweeped me off into the gym. It was all a bit of a shock. Alison came and joined us, and helped talk it out. The decision took me completely by surprise, and I hadn't thought about how I would say goodbye at all. I thought I had another month. That these friendships would be cut off, and ongoing contact was frowned upon. I was able to calm down though, but cried all again when I told a health care assistant I was close to about the move. There are many staff I never got to say goodbye to, as they weren't on shift.

The next day, I had my last splish splash session. I think we just had splash time, playing with all the floats and balls. I got the physios to bat me around in the ceiling hoist, untill it made an ominous cluncking sound. (It was just me in the pool, so we didn't disturb anyone.) I remember a physio called Ryan hadn't been in the day before; I told him I was leaving the day after. His eyebrows shot up and he went, "tomorrow?!" and I almost cried all over again. Both Sarah and Kerri were off sick those 3 days, so I didn't get to see them before I left.

It was Wednesday 24th March the day I left the hospital. I firmly believed I was going to where God wanted me to be. It just hurt embarrassingly. I left at 3:30pm, because my sister and both my parents wanted to there, so it had to be when mum finished school (she's a teacher). Usually what held up patients leaving was sorting out their medication, but my nurse made sure it was all ready for me. A few weeks afterwards, I wrote a very melodramatic, over-exaggerated tongue twister about me leaving, called 'Hospital.' I tried to fill it with all the sounds I was working on, hence the hyperbole.

When I started saying goodbye to the physios, I said goodbye to Nathaniel first. That set me off. Someone was telling me lots of nice things about me which was making it worse, as I just cried all over again when people were nice to me. Rachel came out of another patient's family meeting and came down the ward to meet me. We hugged there (I cry) then Alison and Rachel walked me down the ward and through the doors. Other staff, and my family were waiting at the door to clap me out. I just kept going, and we walked all the way out of the hospital entrance and I got into my mum's car. It's no one's idea of fun, living in the hospital, but I'd had a surprising amount of it.

When I got to the rehab centre, I met lots of the staff, who were very nice, and Becca and someone else came and assessed me for how the staff should transfer me. It was said I could step with 2 people onto a commode. My family got a takeout meal and we ate together in a room there. I cried so hard I could not eat the food. Lots of things the next day made me cry too. I hated being in a room alone. At breakfast the next day there was a near fight and some awful language (I've never seen a situation here that bad since). My bathroom was a bit daunting. With all this, I was sniffling at a table in the lounge (I hated the first impression I was giving), when one of the care staff said, "it's much better here, there's more community than at the hospital". I just stared at her.

She gone.

Sunday, September 22, 2019

54. Survivors

Today is 1 year since my brain hemorrhage. To mark the anniversary, I met up with Dean, my fellow neuro rehab patient who had a stroke a few hours before me. I didn't give him a card. We met at a local café, and he walked in, using just a light weight stick. He had been 4.5km into a 5km park run when he had his stroke, so yesterday he walked the last 500m. Unlike me, he went home after he left the hospital. After being put on a long community physio waiting list, he has been seeing a private physio. My current physio had urged me not bother with community physio because of the waiting lists, and just to see a physio privately in Sheffield. Dean's story definitely proves the NHS is excellent in a crisis, but funding for neuro follow-up is sadly lacking.

Yesterday, we dropped Joanna off at Royal Holloway university, where she will study drama and creative writing. Ask her about it, I think she is settling in okay! My dad managed to pack the wheelchair in the car, along with her stuff, so that all 4 of us could drive down with her. She and mum can't have flashbacks of their last fateful drive down if I'm there in the car with them, can they? Taking full advantage of the blue badge parking I brought, we were able to park directly in front of the halls of residence. I think Joanna was ready to leave home, though this year has certainly brought us all closer.

On Friday, my friend Anna came to my centre to learn some physio exercises she can do with me. (Anna who I'll be living with/will be my boss from Tuesday.) She helped me walk, and could see an improvement even from when she walked with me 2 weeks ago. She's all ready got the idea: "Chin up! Eyes forward!" I muttered my mantra of: 'Shoulder. Hip. Knee. Shoulder. Hip. Knee.' Afterwards, Anna flew off and met Joanna at Leicester's Fridays for Future youth climate change strike. I really should have got my act together and organised going. I wish I'd been there.

On Thursday, I went with Becca and some of the other staff for a leaving meal. I reflected how it's no one's idea of fun living in a care home, but it's been loads better than waiting around at home for a community physio. I've met so many great people, and have been so privileged to have access to a physio gym, and physio! I know I've felt like I was hanging around a lot of the time, but that's everyone's experience of stroke. Here, I have felt a lot of the staff are parent-worthy protective over me, but I feel like that is partly my age, and partly the clingy system. Shows they care! If the therapists had their way, I'd be staying another year.

Earlier in the week, I had some final visits from some friends, and one asked, "what does it feel like to learn how to walk?" My one word answer was 'tactile'. When you start out, it is very hands on, (and very noisy on my part). Then, as you get better, you do more stuff on your own. Until finally, I'll just be left with some excercises, and it will be all up to me. Kind of like the school system, through to university. I always said to my friends when we were doing our exams at school, 'what really matters is your attitude, because if you're thrown into a random social situation, how you cope depends on how you treat people. No will ask you your grades'. How right I was. Better keep remembering that for university.

Made it this far!

Wednesday, September 18, 2019

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.

Saturday, September 14, 2019

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?

Tuesday, September 10, 2019

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!

Sunday, September 8, 2019

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!

Wednesday, September 4, 2019

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?

Sunday, September 1, 2019

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.

Wednesday, August 28, 2019

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.

Monday, August 26, 2019

46. Watch Out For The Bike!

Well, the wheelchair and the glove have arrived! The glove holds my fingers and thumb out in tension with small rubber bands. Fighting this resistance I can make a pinch using my thumb and forefinger. The glove came with some little foam cubes, so I have been practising my fine motor skills by stacking them. The glove looks very sci-fi, like a bionic hand or gauntlet. Can't snap my fingers yet, though. I feel very superhero. Good job I've learned from the films, and know if I'm nothing without the suit, I shouldn't have it on. It's gonna need practise.

When the new wheelchair arrived, the occupational therapists had a field day. Cyprian and Becca both tried it out, and I practised in the garden. I had thought the electric would be a big, scary Ares, god of war, but next to my acoustic, it looked squat and beetle-like. It reminded me of a little black gun dog puppy introduced to an adult in its prime. I called it Pluto. Hermes sat patiently as we scampered around with excited Pluto, a bit battle-scarred but not what you'd call old. I reassured him Pluto would just be for outdoor use, and I'd still use Hermes indoors.

The next day Cyprian and I test-drove Pluto to the shop and I bought potatoes, beans and cheese. Back at our centre, I prepared the meal myself, using a one handed workstation that I had bought. That workstation has a clamp to hold food, so you can cut it with your free hand. It's rather fun. A useful, utilitarian tool, I reminded myself, and not a toy. I also used an electric can-opener for the beans. I could then put everything in the microwave fine. It was a good way to see what I could make for myself. A simple meal, but doable. If all else fails, potato will have to be the way forward.

This bank holiday, my dad's family had a gathering in York. On Saturday, I joined in with the first part of a 10 mile walk, crushing the dirt with the electric wheelchair. I managed to go through a field and 2 kissing gates easily, with 7 children running ahead to make sure it was wheelchair accessible. I confess I prefer being pushed - it requires less concentration on making sure I'm not drifting into a child. I also find driving a bit boring (probably all the concentrating). I passed my driving test first time when I was 18. I'm not actually a bad driver, once I know what I'm doing. It's the same with the electric. Just scared I'll get distracted and run someone over.

Later, my cousin Emre pushed me all over York, with Joanna. As well as going into some bookshops, we were also impressed by the summer ambience of York in the late evening. A wheelchair does look a bit out of place though amongst shambling streets, rowdy bars, chilled-out buskers and soft sepia lighting. Our day was made when one man enjoying the night-life saw us coming and cautioned his friend, saying "watch out for the bike!"

Triplets?

Wednesday, August 21, 2019

45. There's A Snake In My Belly

I feel like it got to a point where I was the little ward mascot, I'd been there so long. Once, one of the student nurses was being nurse-in-charge for the day, and made me a paper patient-in-charge badge. Staff kept sticking it back on me, which I found a bit embarrassing. Didn't want people to think my ego had inflated that much as to have actually made myself a label. Not like I made it my business to know everyone in the ward. People just talked about their business very loudly. A few junior doctors were specifically sent my way to learn about my experiences as I was deemed very on the ball.

One day in the new year, it was time for Dean to be discharged. All of the therapists and some of the staff and patients lined the doorway. He slowly walked out alongside Alison, his physio, concentrating hard, but without her (physical) support. He said that level of concentration required tunnel-vision, so he didn't see that Andy, another patient, was in tears. He had had a stroke too, was a similar age to Dean, and he would be discharged next. In that heightened emotional atmosphere, with everyone cheering and clapping, it was not surprising he was affected. Tears sprung to my eyes at the sight, and Sarah saw me and welled up too. Discharges weren't often that affecting, or as well attended. It was a testament to Dean's character, and positivity.

In the new year I also had my worst hospital experience, when I couldn't use a toilet for 6 hours. I had an eye appointment over at the other hospital. Because I couldn't transfer into a car, it was arranged through the inter-hospital ambulance transport service. I was immensely distrustful of this service. However, I managed to turn up for my 9:20ish appointment on time. I was told basically the muscles in my eye were weak and shaky due to the nerves in the brain. This was something that they couldn't do anything about and would improve over time. This took all of 10 minutes. Then we had to wait for an ambulance to pick me up, spending the whole day in the opthomology waiting area. The boss came and apologised, and the ambulance was chased up by their reception and by the neuro rehab ward. Luckily my dad and sister were with me.

A few hours in, I was already bursting for a pee. We were sat right by the disabled toilet, but I couldn't use it because I couldn't transfer onto it. After a ridiculous wait, the ambulance drivers came at 4:00. They had to drop off another patient first though at a nursing home, so I got back at more like 5:00. I have never been so desperate for the loo, or a bedpan, in all my life. I'm traumatised just thinking about it. I told the driver to turn the siren on.

Around that time I got an appointment to have my PEG tube removed. On the day, I had to be nil by mouth for 6 hours, which wasn't a problem as it was first thing in the morning. Amy the health care assistant walked with my bed down to Endoscopy. I had managed to convince the doctors I wouldn't need an emergency needle (cannula) in my arm, as I told them I wouldn't panic and need sedating. Then, lying in my bed, I was wheeled into the operating room. A PEG tube is attached a bit like thread in fabric; it has a knot on the inside. It needs to be snipped to be removed, and the knot taken out.

To remove it, the tube was snipped off from the outside. Then a long bendy black probe with a camera on the end, which looked like a snake or an eel, went down my throat. Tiny graspers on the end grabbed the knot-come-loose, then the tube was pulled back up out my mouth. The doctors talked me through what everything was going to be like. There were four people in scrubs, but it seemed to be one lovely lady's job to just comfort me, and tell me I was doing well. A numbing spray that tasted a bit like bananas was sprayed down my throat, and between my teeth was put a mouth-guard (which looked a lot like a dummy), which had a hole in it for the probe to go through. The probe was a lot thicker and wirey-er than what I was expecting. The way it hung in the air felt like it was looking at me, inspecting me; animal, and curious. I still can't quite grasp it was swallow-able.

This snake went through the dummy. They didn't put me under anesthetic, as it was a quick simple job, and it helps if you can swallow the probe down. I swallowed the probe, marvelling at how I could still breathe. Breathing through my teeth sounded a lot like Darth Vader. I was warned that the coil of plastic entering my stomach would make me feel bloated, and it did. I could feel it poking around inside me. They could see the insides of my stomach on a computer screen, through the probe's camera. This screen was in my line of sight, but I kept my eyes shut to concentrate on staying relaxed (and not laugh at my own mental images). The tiny graspers on the end of the probe got the PEG knot, and they started to pull the probe back. It popped out of my mouth with a little rasping burp. It was coin-sized, and yellow.

Me singing to Joanna in my bay.

Sunday, August 18, 2019

44. I'm Going To Cut Off My Hair

Well, I've ordered the electric wheelchair, and the SaeboGlove has been approved and dispatched. They should both arrive next week. The Botox in my arm has worked well. My hand has the same grip and movement without becoming flaccid. My dad and I have practiced walking down the stairs everyday this week, and I have been using the treadmill a lot with the physio assistant. (This is a rehab treadmill by the way, which goes nice and slowly. Not jogging yet.)

My dad and I also had a fruitful trip up to Sheffield. Yes, my plans are all on track for going back. We visited a private physiotherapy clinic I am planning to go to. I think they were worried that their facilities weren't neuro-specific enough for me, but then saw my level and said I'd be more than welcome to come to them next month. To be honest, it would be nice to leave brain injury land behind. I also re-registered back at my university GP. We could organise NHS community physiotherapy through them, but I've been told to seek it privately to be on the safe side. No danger of waiting lists.

After seeing some friends for lunch, we saw my accommodation again. It's a university flat of 6 returning students. The front door already has a push button opening, because of the girl living there who already uses an electric wheelchair. I can get my room door open myself, yay. When I viewed it this week, it was to advise them about where to put in grab-rails in the bathroom. I've been given the room because it has an ensuite wetroom. It's a bit bigger than my wetroom at the moment, but walking around it looks potentially easier, once the rails are in. We also viewed the on-site private gym. It has a swimming pool with a hoist, which is ideal. The physio also told me they can come with me to look at which of the equipment is appropriate for me to use.

Finally, we met my social worker, and an occupational therapist. She said she could source a self-propelling commode for my bathroom. The hard part is working out how I'm going to be fed. My friend Anna is down to live with me, but I don't think you can hire someone you live with to make food. We could just call her my carer, as it makes so much sense for us to eat together, but I hardly need care. I could cook with her. I just ordered loads of one handed cooking aids; I'm ready to help! Also, I have the feeling my church community will be keen. I already used to eat with other people once or twice a week when I was at university before. Lots of people are looking out for me. Plus, I have have other friends returning from years abroad. I know I'm not going to starve.

The debate with my social worker is getting someone to supervise my morning routine, as it rings alarm bells, a disabled person in a new environment walking alone in a bathroom. In theory, supervision makes sense, but in practice, I know it will feel a bit silly. Someone would have to come into my room in the morning, stand outside the room whilst I showered and got dressed, then go. This only takes about 20 minutes. I know, it wouldn't have to be for long. Currently, Becca has just changed my care plan to say I can walk in the bathroom with regular staff. By a month, I think I'll be more than ready. All that really limits my independence is having to ask someone to tie up my hair. I'm going to cut it off.

The atrium of the social services building felt a bit like an airport.

Tuesday, August 13, 2019

43. Will You Be Like This Forever?

I got used to sleeping in a shared room pretty quickly. One other patient who snored VERY loudly came and went.  I found it very taxing when other patients in our bay were watching the TV (or falling asleep watching it) when it was time to sleep. It was even worse when the program was hospital releated. Everyone was put in bed by 7-8pm, and the final drugs round was at 9:30-10pm. I used to read or listen to music during that time, but I did want to sleep. Getting it dark was a constant battle. It was a struggle trying to suggest calmly that it could be dark now, whilst trying not to sound like the Warden from Dad's Army. I had a string of fairy lights dad always used to turn on in the evening, which I would then ask to be turned off later on. One nurse was particularly thrilled by them, and I woke up on Christmas morning to the lights glowing above me.

There was one night nurse who used to turn on the main light to do her early morning medication (as opposed to using bed top lights). It was probably the only time I snapped at anyone during my whole time in the hospital. We quickly developed a banter. She took her role of watching over us a little too seriously, in my opinion. Maybe she shared a spiritual connection to Florence Nightingale. It was poetic justice when she asked one of these other patients what she could do for her, and she said "turn off the lights." I just showed her my favourite Donald Trump videos, to express how I felt.

I started camping out (metaphor) in the corridor, next to the nurse's station and in front of the therapists' office. This was the one place devoid of screens. The TV in my bay was some patients' only form of entertainment. Yes, we had a dayroom, but no one sat there except one patient, who used to sit in there watching The Jeremy Kyle Show. No thank you. My spot in the corridor was rather central, and meant I would be tortured by the staff's often slow responses to the doorbell being rung. (There was limited access to the ward because brain injury = confusion or denial = tendancy for patients to try and run away.) However, as the ward's sentinel, I was right in the thick of it (that makes it sound busy. It mostly wasn't). Yes, for the most part it meant watching staff run around answering buzzers or writing notes, but it meant I was likely at least to be talked to. I got to know all the professionals I would never have met in my bay.

During the Christmas holidays, lots of my family came to visit, including a fair few of my under-10-year-old cousins. The boys loved having a go at my micro-stimulator. This was a machine with 2 electrode pads you put on your arm to make your wrist flex. It sends an electric current through the nerves and stimulates them to move the muscle. Kind of like making it remember how to move? This doesn't have any instant effect, but it is good to do regularly over time. Anyway, it was the kind of tool you wouldn't give a small boy. Of course, that's what we did, and my cousins could see how strange it is to watch your hand flick up in a small salute. It feels like an electric wire without the shock at the end. I think it amused dad more than anyone.

2 girls visited who competed over getting to push the wheelchair. They got to take it in turns pushing to the canteen and back, navigating some of the corridors' slopes. Talk about This Girl Can. They were barely taller than the wheelchair. Some of my cousins were quite shy, in such a clinical environment, and me being so physically changed. These girls were not, chatting away and drawing me pictures. One did go all shy for a bit, then whispered to her mum, who got her to whisper it to me.  She asked, "Will you be like this forever?" Well, not if I can help it.

We also had a Christmas raffle. I think every ward has one. It's the only way they can buy 'luxuries' for the ward. One of the prizes was a giant child-sized teddy bear. A nurse's son had brought it home from school as a prize. She had taken one look and promptly donated it to the ward raffle. Everyone was very divided over whether they wanted to win the bear or not. It made the raffle a kind of Russian Roulette. I was Team Bear. I didn't actually want it; I just found the idea of it quite amusing. In the end, Kerri, (suitably dismayed), won the bear. You know what? I won 1st prize.

That was my present to the parents sorted.

Saturday, August 10, 2019

42. Configuring Updates

We've decided to buy an electric wheelchair. You can get ones which fold closed for about £1,000. They don't look the sturdiest of things, but I don't need it for life-long comfort and reliability.  I just need it to get me places, and to fit in the car. My Disabled Student Allowance has got me a laptop, which arrived this week. Simone, the speech therapist, has also sent off an application for a SaeboGlove, via a Stroke Association Rehab grant. This glove will act like a splint, stretching out my fingers and supporting my thumb, which will enable me to grasp objects. We both individually chatted to the lovely lady in charge of ordering the grants, as we did not know what to put for my finances or bills. My student loan was cancelled for this year, but I'm living in residential rehabilitation, all bills paid. She told me what to put, then said the grants are approved by a panel. After that, she can order it straight away, so it could take up to 2 weeks.

I also had repeat Botox injections, back in the ward opposite the neuro rehab ward. My neurologist runs the Clinic. I had my appointment with her on Monday, then the Botox on Tuesday. Nathaniel, the physio, gave the injection with her. Dee, my current physio, came with me, and was impressed when I reminisced with Nathaniel how it was only this November that I couldn't even lift my head up independently. We debated the issuse of Botox in my hand. I'm well aware of the risk, that the fingers could become too relaxed for functionality. I'm hoping having the SaeboGlove will help counteract that. Botox takes about 10-15 days to kick in anyway, so I won't know for a few days yet.

I also said hello to Rachel, Sarah, Kerri and Alison (one of the other physios). Rachel did some walking with me in the ward, and could see the progress I've made. I also finally arranged to meet again with Marilyn, my intensive care nurse. She hasn't seen me since October, when I was unable to talk, just about able to wave, and had to lie flat on my back all the time. It was a very joyous reunion, me standing to hug her. She and Dee could both talk about me in Shona (they're both Zimbabwean). It sounded jokingly desparing.

I went swimming with Dee and my mum, so my mum can take me swimming in the future (Dee showed her the moves). She also showed my dad how to climb the stairs with me. Now my dad and I have been able to walk down the stairs, along the corridor to the gym using my walking frame, do a gym session and do the same thing on the way back. We also have a new physio assistant, so Dee has been teaching her how to use the treadmill with me. Dee's going on holiday next week, so needs everyone to be ok in her absence.

In my washing and dressing sessions with Becca, I've become virtually independent. Maintenance put in grab-rails for me on the wetroom walls, so I've been walking around the room, standing for the shower, and walking around to sit on the toilet to get dressed. No commode. I even tried to make my own bed. Becca had nothing to do, so amused herself reading a poetry book off my shelf. When at home, I can toilet myself and dress myself sitting on the toilet fine. We don't have a downstairs shower, but I can just wash. I've also been taking the opportunity, when at home, to practise walking with mum and dad. We walked the other day in the Leicesteter botanical gardens. I offered the wheelchair to my Granny. It was a bit big for her, and she found self-propelling harder than it looks.

Good effort.

Wednesday, August 7, 2019

41. The National Elf Service

Then Christmas was here. I was still transferred around using the hoist, so I couldn't go home for the holiday. We couldn't all be like Dean, who could go home at the weekends. At least I had reached normal diet stage so I could eat whatever I wanted at least. By that point, I'd started banging on about how I wanted to dress up as an elf for Christmas. I didn't expect anything. It wasn't a children's hospital, so there was no tradition of fancy dress or anything. Bit of a harder costume to make than my ghost-sheet at Halloween. However, a health care assistant called Amy ordered me a suit off eBay. Someone else supplied me with tacky decorations for my bed space.

On Christmas Eve, the night nurse had fairy lights bedecking her drugs trolley, and was wearing a Santa hat. I wanted to stay up late, so thought I'd drink a coffee. She told me the ward only had decaf, so there went that plan. Early Christmas morning, the night staff got me washed and dressed in my costume, and hoisted me into my wheelchair. By the time it was the night shifts' handover to the day staff, I was seated by the nurses' station next to our giant ward snowman, ringing a handbell and yelling (quietly) "IT'S CHRISTMAS!" I was trying to sing along to a Christmas playlist, whilst the night nurse attempted to dance with me. All I can say is, we looked like we'd had a bit too much fun with the drugs trolley that night.

I was tasked with being the Santa's Little Helper that I was, and hand out everyone's presents at breakfast. Of course, I needed to wee just as they wanted me, which meant being hoisted onto bed and using a bedpan. It looked ridiculous; I was wearing red and green stripey tights. When I was ready, I helped give out the presents. Every patient gets given a generic gift bag, 'men's' or 'women's', from a hospital charity that gives every inpatient a present at Christmas. One of the deputy sisters had also been saving up the thank you chocolate boxes from satisfied ex-patients, to give to the staff at Christmas. I had presents from family and friends as well which I had insisted on putting under the ward's fake Christmas tree. (The staff discouraged this in case one of the more confused patients helped themselves.)

In the morning, someone fetched me to go to the chapel. Chapel was held once a month. There were about 5 volunteers, and 1 or 2 (very elderly) inpatients. The patients were always different each month. I went about 4 times, so the chaplaincy actually got to know me a bit. I didn't have much to do with them normally; the chaplain visited me every so often but I never kept him talking long. That Christmas day, I was the only one sat in the chapel, for a long time, in my elf costume, with just the chaplain playing the keyboard. The chapel was multi-faith and looked decidedly un-christmassy (okay, I think they had a little tree).

Mum, dad, Joanna and aunt Ruth joined me, and I think 3 other patients were bought along by volunteers. The service was Church of England, but with a mixed denomination style, and quite informal. At one point, the chaplain tweeted the service. I did sing along very quietly and in a monotone. It was a bit embarrassing trying to find the page in my hymn book as I almost dropped the book each time, and everyone would notice. They also noticed my laughing outburst when Mum, Dad and Ruth promptly stood up for the hymns (well trained), only to be told they don't stand up here as the patients can't. (I burst into giggles another week just remembering this mid-hymn, which again rather drew attention.)

The 5 of us had a Christmas lunch/picnic (risotto) in the canteen. We skyped my other aunt and family in America, which was their first time seeing me, since they couldn't physically come over. I also went on a tour of my ex-wards, back to the Brain Injury Unit and the Intensive Care Unit, giving out chocolates. This trip featured a lot of hospital art, where staff had clearly got creative with medicine pots, and plastic gloves, and bedpans. I saw several cardboard rudolphs and paper snowmen.

My cousins Emma and Sarah came in the afternoon and we played Christmassy games. I felt bad for the other elderly inpatients whose families didn't sound like they were having as much fun as we were. I had a Mexican student friend message me to say she was in Leicester and could she come to visit me? I said yes, but didn't realise she meant there and then, so she joined us. My family all left me to go home and have their Christmas dinner, and I had a hospital sandwich (so the caterers could have a holiday). I proudly wore my costume the whole day long.

(I'm sorry about the groan-worthy pun of a title. If you can think of any better ones please comment below.)

Chapel Elf.

Sunday, August 4, 2019

Interlude pt 2. The Haemorrhage

I've just been to visit Adam, and his girlfriend Ellie, in Oxford. They told me more about that day on September 22nd when Adam called the ambulance for me. Ellie had just left our student house in Sheffield to catch a bus to Reading (I heard her leaving). Adam rang her and she came back, and they got the bus and taxi to A and E. My friend Cameron joined them. The doctors wouldn't tell them anything about me because they weren't my family. Adam got my mum's number, via another friend of mine, and they finally told him something. Joanna picked up the phone, and I've asked her to write her experience below.

••••••••

This is my sister Joanna's account.

I woke up on the 22nd of September, with all my stuff packed ready to start University, although somehow it just didn't feel like it was going to happen. My mum and I loaded the car and set off for London. 20 minutes drive away from the University, we realised we were going to be late to the welcome talk. Mum planned to drop me off and then find a place to park, but before we got any closer my phone rang. It was Elizabeth's friend Adam. He told me, in a very serious voice, that he'd found Liz unconscious on the floor in her room. He said he'd called an ambulance and she was now in hospital, also that she was still breathing. I wondered for a second if this could be a prank call. He said he'd been trying to get hold of us for ages, and that the hospital staff could only speak to family about Elizabeth's condition. Feeling sick, but a bit like it was all a dream, I turned to Mum in the driver's seat and told her what Adam had said. We pulled into the next hard shoulder and a doctor spoke to Mum on the phone. My mum then told me Elizabeth had had a brain haemorrhage that morning, and I got the message that she was unlikely to survive. They also said we must turn around immediately and go to the hospital. Afer relaying this information, Mum asked if I wanted her to drive me the last bit to University and drop me off. I said no. Then I said a prayer out loud for Liz and we did a 'U turn' on the M1 and headed to Sheffield.

"Not a brain haemorrhage... This is what happened to Grandad, this is really bad Joanna." This is something I recall Mum saying. Her Dad died of a brain haemorrhage. I knew all of this of course but I still did a google search to find out any extra information I could. I learnt how to spell 'haemorrhage' pretty quickly. The world had stopped, yet neither of us cried or spoke
much, it didn't feel that real. I felt God with me and His peace, very real, though. I felt like He was sitting opposite me, face to face.

As Mum drove, I made phone calls to family members. First, of course, I rang my Dad, but there was no reply, as he was away in Somerset for the weekend, on a walk, with no reception. We decided to ring Mum's sister Ruth next, and ask her to go straight to Liz, so she'd have someone with her sooner, as she was nearer to Sheffield than us, and our journey would take a few more hours still. Mum got out of the car to get petrol and I rang Ruth. The moment I told her the situation, I heard her burst into tears on the other end of the phone, and I cried too for the first time. She said of course she'd go to meet Liz.

Then it was calls to the wider family, repeating the story over and over again, asking them to pray for Elizabeth and hearing the different exclamations as the news hit each person, whilst Mum drove on, silently. I kept ringing Dad at half hour intervals, but still no answer. I rang my University, told them why I hadn't enrolled, and found out I had another few weeks until the enrolement deadline. After a while, we stopped at a service station. The song 'Somewhere only we know' was playing. As I walked out, I heard the line 'this could be the end of everything'. It certainly felt that way.

Kind friends of ours offered to meet us at a service station to drive us the rest of the way, but we missed the turning, so Mum decided to stick it out and keep going. Back on the motorway, Mum finally cried. I suggested we pull over, but she wanted to carry on, so all I could do was put my hand on her shoulder, in an attempt to comfort her. It broke my heart to see my Mum sobbing over the steering wheel.

Finally, we got to speak on the phone to Dad. His sister had got through to the son of his godfather who he was walking with, and he told his Dad, who told my Dad. I was very worried about whether or not he would be okay driving alone from Somerset to Sheffield. I can't remember exactly what was said when we spoke at last, although there was one part of that phone call I will never forget. We were anticipating that we might be asked whether or not Elizabeth should receive brain surgery. What if surgery was the only way to save her life? On the other hand, what if the surgery went wrong and she was sent into a Permanent Vegetative State, then would she be kept alive on a life support machine indefinitely or could the machine be turned off? We decided no brain surgery. At this point we didn't know the haemorrhage wasn't in a part that could be given surgery.

Approaching Sheffield, Mum's phone satnav started to play up, and we were sent in different directions around the city in search for the Northern General Hospital, where Liz was for the first day before she was transferred to the Royal Hallamshire hospital.

At last, we arrived, and we met my cousin Sarah near the hospital entrance. We went through to the room where Elizabeth was. Aunt Ruth was there and cousin Emma.
Elizabeth was lying in the hospital bed, sedated, with tubes coming out of her face and all over her body. She looked peaceful. The tubes didn't seem that weird to me, it was just Elizabeth, and she didn't even look ill, infact her skin looked brighter and healthier than mine (probably due to her tan). The nurse with us was very friendly and upbeat and that helped a lot.

A friend travelled with Dad from Somerset, and once they arrived in Sheffield, he got a stranger to drive ahead of Dad, to lead him to the hospital. When Dad arrived he cried, and cried. Next I made a list of the people closest to Elizabeth and sent messages, asking for them to pray. We were told that the staff didn't know what would happen to Elizbeth, and we would just have to see how she did over the night, whether or not she'd wake up.

When we were instructed to go to bed, I asked if I could stay with Elizabeth through the night. The answer from the nurse was no, and it was the same each time I suggested the idea.

Unfortunatelyf for us, the Arctic Monkeys were playing that evening in Sheffield, and so all hotel rooms were fully booked. Ruth, Emma and Sarah stayed the night in the visitor's waiting room. Mum, Dad and I were offered the only available hospital guest room. So I left Elizabeth, aware that this might be the last time I saw her, alive. We went out to the car and took clothes, pyjamas and toiletries from my Uni things, and shared them out between the family. Mum likes to point out that 'we were all wearing Joanna's pants!'

My friend Evie sent me a Bible verse. She hadn't known it, but this happened to be the one I find the most encouarging, "The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Mum and Dad have told me they stayed awake most of the night, but after reading that verse, miraculously, I fell asleep.

••••••••

This is my aunt Ruth's account.

It was unusual for me to be at home with nothing planned at midday on Saturday.  That changed with a text from my sister, Margaret, saying they had really bad news about Elizabeth.  I called her immediately and spoke with Joanna as Margaret was driving the car. She explained that they would like me to drive to Sheffield to be with Elizabeth in hospital, as I was further north than they were and would be able to get there sooner than them.  I knew the importance of somebody getting there to be with her as soon as possible.  It was almost unbelievable to hear them say that the chances of Elizabeth surviving a bleed on her brain were alarmingly slim.  I immediately got ready, and began pleading with God to let her live.

I was struck by the control and calmness of Joanna's voice, knowing what she was facing and there were no words to express the emotion, but I remember saying, 'she can't die, not now'.  I thought of them driving north behind me, as I drove as fast as I could, without stopping. For me, every minute counted and I prayed for much of it, and wondered how they were coping with further to go. I had called some people and asked them to pray and I had also spoken with Liz's cousins, Emma and Sarah, who were making their way to Sheffield too. I imagined all of us converging on the hospital from our separate directions.

At the hospital, everything seemed closed for the weekend and there was nobody around to ask where to go or where to park. I tried to work this out, not wanting to waste any time at all, parked in an empty car park and set off to look for the right department. I later learnt that the hospital covers a huge area and was glad that I had parked fairly near where Elizabeth was.  When I found the ITU, again there was nobody around, but automatic doors let me into reception and from there I could press a buzzer to gain entry.

From start to finish, the staff lived up to their CQC outstanding rating. They were clearly right on it, were very attentive and so I called Margaret and Joanna to let them know that Elizabeth was getting the very best care. I described to them what I saw and what the medical team had said and done so far. The team had explained what had happened since Liz arrived and that they'd taken over control of Liz's functions and wired her up to machines, to allow her body to cope with the bleed, but would slowly bring her off the machines the following day to see if she would survive the bleed. At this point I didn’t know Andrew wasn't with Margaret and Joanna and that he’d been uncontactable for a while.
The staff did not raise any hopes for Liz's survival and explained sensitively the seriousness of the bleed.  They made it clear that if Liz made it through waking up the following day it would be against the odds. However, they were very respectful of her being in ear shot and tried not to make it sound hopeless as we were all aware that she might be able to hear. I read the Bible, prayed over Liz, talked with staff and also Liz. I described to staff Liz's character, so they had an idea of the person they were treating. The rest of the family arrived bit by bit, and some family friends helped out giving lifts, and bringing food. Many people were already praying and letting us know so, in support. I found it reassuring, too, that Liz seemed to have a great medical team around her who knew exactly what they were doing and inspired confidence. They even helped us with arrangements for the night. The Arctic Monkeys were playing in Sheffield that evening and all accommodation seemed booked up in the city, so we were allowed to camp out in a couple of rooms there in the hospital. The staff gave us a supply of tea, coffee and milk as there were no places open, no vending machines and no shops nearby to buy drinks.  

There were lots of people sending texts and we were feeling the anxiety of what would happen the next day when they were going to wake Liz up from the induced coma, but we did get some sleep and it was great to be together as a family.

••••••••

Tomorrow I have my outpatient appointment back at the hospital. No idea how much of a definitive thing it will be.

Wednesday, July 31, 2019

40. I Need A Hand

Lindsay began seeing me every week for washing and dressing with Kerri, the therapy assistant (therapy assistant = physiotherapy + occupational therapy = double the demand). Kerri and I used to set each other off giggling, and Lindsay would have to tell us off. The three of us had some great bicker-banter going on. Combine my difficulty in sitting up, getting used to washing with one hand, and my tendancy to be easily distracted, it was no wonder it would take me over an hour to get ready in the morning with them.

Kerri also started seeing me to help me with stretches. We found out I laughed, rather than screamed, when a stretch became too much. An occupational therapist's job is also to look at hands, so Lindsay saw me every week to look at the movement in my hand. Lindsay also saw another patient called Dean, who befriended me. Dean was about my parents' age, and had right-side weakness. We discovered he had had a stroke on exactly the same day as me, just a few hours before. When I first came onto the ward, he'd been lent the ward's electric wheelchair, so he used to carefully creep down the corridor like a snail. He was put back in a manual chair though, because it encouraged him to have a better posture. Lindsay told him off for teaching me how to scoot, which he sneakily did when the therapists weren't looking. He didn't really teach me though; scooting is common sense.

I also used to be taken off-ward to see an occupational therapist called Marie in a special workshop. She was parent aged, very experienced, and her job was specifically to look at patients' hands. Initially, she had a kind of strict teachery demeanour that developed over time into a wry repartee. Marie looked a lot at the sensation my arm. My sense of touch, even now, is not localised. For example, I know my fingers are being touched but I can't tell the exact specifics, like which one. A standard thing that is done to work on sensation is to immerse the hand in containers of materials with different textures. So, Marie used to dunk my hands in bowls of pebbles, of popcorn, of buttons, of hammer-beads, of rice etc. This was funny, as I told her.

We also did other hand tasks like the mirror test, where you hide your stroke hand behind a mirror and look at the reflection of your moving other hand, trying to trick your brain into believing it is seeing the inactive hand move. In theory this helps the neuro-pathways mend. It didn't really do anything for me, but was still interesting. Marie also had a lego-piece-sized sensor that worked for computer controls. She would stick this on my twitching thumb and the miniscule twitches would control a computer game. I could make a monkey go up and down a tree to fetch a banana. The games were very simplistic, and the graphics awful, which I used to complain about. We also played games where I had to put a stick in holes in a board. She would basically have to hold the stick in my hand to do this, as I had no grip, but it was all about stimulating that brain.

The therapists also ran a therapy group each week, where they would gather all the relevant patients and do appropriate exercises with them. In the run up to Christmas we had one where we made the ward a giant snowman out of plastic cups, using staplers. I wasn't much help practically, but provided vital moral support. Another week we played Christmas charades. I was by far the most enthusiastic (and vocal) player, and I tried to use my left arm, but acting when seated, with an arm down, and not being allowed to talk, is a trial.

Eventually, my hand started curling up. This is because the muscles tighten, and fingers are pulled inwards. I was trialled with botulinum toxin injections (more commonly known by the brand name 'Botox'). I got Kerri to write this on my schedule as 'stabby stabby'. Rachel gave the injections to me in February, under the eye of one of the doctors (who obviously didn't get the memo that we were going to inject my shoulder as well, and so was surprised when I fluidly took my top off). This injection into my wrist, as well as shoulder and leg, wasn't permanent. It paralysed certain muscles to give my brain a chance to utilise that muscle more. After 2 weeks, my fingers were lying flat again, Botox giving them respite.

Rachel made me a badge for my injections (not the bear).