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.

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.

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.

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!

53. Can Everyone Be Upstanding

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

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

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

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

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

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

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

52. Progress Report

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

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

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

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

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

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

One track mind?

51. Splish Splash

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

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

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

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

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

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

Handstand!