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.

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?

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.

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.