Stroke and mirrors

This isn’t a long, deep or exhaustive post; it’s a method for me to log things and stop stewing on them.

It’s a compilation of small things, while there are clearly big things but this is aiming to log the niggly things I miss which I will add to as and when things hit me.

• Leaning backon my elbows sat up in bed
• Holding a book or magazine to read; I miss the feeling of holding a book
• Holding a page still to write on it, a weirdly niche niggle
• Pressing the car horn dramatically (pressing a button isn’t quite as satisfying )
• Opening packets; I get lots of things delivered because it’s easier than shopping but then can’t open them which is frustrating
• Packing my own shopping; I can drive to a shop, walk around pushing a trolley and unload / scan if necessary I just haven’t got the packing ability
• Drying after a shower, one day I’m having one of those hot air body driers you stand on. Or just be able to dry myself properly
• Not being able to organise my own food to take for lunch when in work and then prep and eat it when there
• Similarly not being able to make my own drinks at work or make drinks for my peers when it’s my turn, I feel srude all the time
• Eating with a knife and fork especially in public. It’s embarrassing to have my husband or family cut my food and I look like an oaf eating with just a fork
• Change music in the car; I’m fortunate to have car play and voice control / Siri but I just want to reach out and press the button to skip a track, change volume or the temperature. Some of these controls are steering wheel mounted too but I can’t press those either.
• Play video games, I’d love to lose myself in the switch or ps5 or my laptop for an hour or two but cannot.
• I want to fuss my dog with both hands
• Typing with both hands; I have a mini keyboard for one handed use and I’m moderately fast using it but I miss using both hands.
• Opening bottles, I just want a drink. I hate having to ask for help on something so small or trying to squeeze one between my legs and risk spilling it all over
• Sponteneity: to just go “I’m going to go to x on my way while I’m out” but that doesn’t quite fit my current narrative or capabilities
• Individuality: carrying on from shoes. Clothes and appearance say a lot about you as an individual, not being able to easily dress or just grab what I want to wear makes me sad, I’ve always been very conscious and intentional with clothing, it’s just another little part of me I’ve lost.
• Hugs. I really want to hug people, I’m incredibly tactile
• Feel: I miss the feeling of things in my hand: a book, surfaces like a wooden handrail.
• Not being able to put moisturisers etc on with 2 hands or style my hair
• Fussing my dog with two hands
• Grabbing a seat belt
• Holding a car door open to get in/ out. My shin is permanently bruised from car doors closing on it
• Sleep positions (in fact this can have its own post soon)
• Cutting my nails.
• Being able to walk faster (like crossing a road)
• Just throwing a hoodie on because it’s a little chilly instead of wresting one on
• Being able to buy clothes and shoes because they look cool not because I can easily wear them
• Wearing a backpack and being able to use a bag easily
• Not being able to use nice stationary (I love a good notebook)
• Eating “handheld” foods that need both hands: wraps, tacos, burgers

you might have noted many posts I publish have a lyrical quote at the end; sometimes very literal, sometimes from scraping my knowledge and occasionally songs appear around the times Im writing. I have compiled a list below. There’s also a link to an Apple Music playlist with them all too. Its not my motivational / rebuild playlist that’s much more personal but the Stroke and Mirrors playlist is below (as of June 2024)

post	song	artist
next steps	up in flames	years and years
wins + losses	fractured	hurts
year one	Problem Child	Jude York
Outstanding day of Ben	life to come	/the Killers
Miracle Scenario	a million dreams	F
Fatigue	Rise /up	Andrea Day
Boxed off	Trapped in a box	No Doubt
Compliments and Nice Words	Smile like you mean it	The Killers
Sometimes Thoughts	Bend and Break	Keane

Prior to my stroke while I was physically fit and would spend many hours a week in the gym I was never ‘sporty’ as a child I never fussed with football or rugby, I was never in any sport team, I have never had a competitive streak.

I did find gymnastics in my 30s though and loved the idea of being in a group of similar people and it fast became a friendship group too.

I did quite early on post stroke discover and join a disabled gym group which has done me wonders in both fitness, meeting people and support.

Through this group an event was flagged to me, a Paralympics taster day on a weekend 30ish miles away. A day to see adapted sports, athletes, coaches and try to find a sport to follow up.

We went; on typical the nicest day of the year so far. To a university known for its sporting reputation to a huge sport centre, warmly greeted and given a schedule for the day.

I started with archery. a bow with a tab bite pull was set up for me. With some instruction on stance and aim I was quickly firing arrows successfully into the target and popping balloons. I really enjoyed it and left details to hopefully follow up with a club near home.

Athletics was next, I was apprehensive heading in, unsure how it works. I tried ‘ walking as fast as possible’ then given a running frame to try. imagine an inverted tricycle, I was essentially propped up and leaning on a chest plate and on tip toes able to propel myself down a track and back, I think with a lower stance and better foot position I could have been faster, but it was worth a go.

We had lunch after.

Next was wheelchair rugby, Ive seen bits and know its absolutely brutal, I was told Id have to get in a wheelchair for the session; Im very aware Im not a wheelchair user and felt rather uncomfortable having to use one, worse though was the fact I can’t self propel, the session instead had a coach pushing me around the court, I can catch and throw with my good arm, when not getting scalded for using my feet to stand.

Final session was Boccia (pronounced bocha) a more complex bowls that is open to many people as long as you can propel a ball somehow, it was surprisingly tactical which I enjoyed and won all my games. I liked it was played in teams too.

Im going to follow up both archery and boccia. see you in LA 2028?

I’m typing this sat in our guest room / my office having been in here all day doing work I was mainly playing with the site editor, (in fact note on my contact page I now have a proper stroke and mirrors email address.)But somehow this evolved into a post because I have a lot going on and want to share some of it.

work

after an understandable wobble a few weeks ago where I considered completely abandoning my career I am doing more and more work, I pushed to work on site more which gave me a huge mental boost, I think being visible, accessible and surrounded by my peers has been great, its also exposed me to projects I can do from home so productivity across the board is hugely improved, making me feel valued. My bigger frustration is that Im using my knowledge and experience to influence things at work and remain desperate to perform some clinical role. It feels cruel to know things, have some control but not be able to be involved physically. I try not to say ‘never’ but I think it’s time I gave this thought chain a rest.

general health

I’ve never shied away from discussing my health (here or in the “real world”) This week I committed to more cardiac surgery, Id been adamant I wasn’t going ahead with any more treatment but that was upsetting my family and my long term cardiologist was so nice, understanding and plain in his explanation that really had no choice although we have been selective which centre I’ll receive treatment in and by whom.

My bank holiday weekend plans were a nice quiet one but I’ve had a nasty cold since Friday that led to a high temp, chesty cough and general unwell.

rehab functions and tools

I have finally been picked up by a community physio, who was absolutely lovely and very interested; it also led to a chance encounter with my very first inpatient physio who gave me a hug and cried when she saw me walking which was incredibly wholesome and nice, I have paused private physio due to the cost but continued robotic sessions as I am seeing real progress and like the technician I work with, he very much reminds me of my dad. I was hoping they would cross paths at a session last week but it wasn’t to be. I continue to do a large amount of self led physio where I can, but Im not seeing much progress anymore, still keep chipping away though.

social

the cruise we took to escape my stroke anniversary was a huge success and felt really ‘normal’ and I re-found my taste for a drink; Eurovision is always a highlight of our year and I spent it with my two best friends as is tradition, drinking, making silly comments and just being brilliant. We’ve got more things planned, another lodge break at the end of the summer, a pride event soon. This year I am determined to make my nephews birthday too as last year I wasn’t ready to do things like that and spent my day upset Id missed it.

misc opportunities

sometimes other opportunities are just waiting.

I recently said I wanted to push this blog a bit more and I was offered an opportunity to team up with ‘Help4ABI’ a new Nhs digital / coventry university resource for survivors of acquired brain injuries like me, I ended upon a brilliant back and forth with their lead person who asked me to write a blog post (dutifully done) which will be cross shared when I can. They also gave me a generous gift as thanks which I was told to buy something for me not for practicality. Ive bought garden lights and notebooks so crossing both boundaries. It was a pleasure to be involved and Im excited to see the outcome.

Via the wonderful disabled gym charity group I attend I was told of an upcoming Paralympics showcase day; not far away. coaches and representatives from Paralympic sports will try and pair disabled people with an appropriate sport to see if they enjoy it and its worth pursuing. paralmpian Ben? Maybe!! one step closer to getting on house of Games I suppose. Plus I like sport, purpose etc. I’m going in with an open mind.

You gotta be strong boy
You gotta be tough
Don’t you know you’re a man?
Anyone could have played ya
Weakness won’t be your saviour’

-🎶up in flames, Years & years (2018)

Litigation

Something I tend to discuss a little less openly but still acknowledge that I began a Medico legal claim many months ago as I believe that my surgery wasn’t performed at the highest level, safety was lax and my immediate post operative care was sub par, had all of this had more due diligence I could have potentially been treated by neurosurgery and life could possibly be hugely different. Hopefully, one day, I’ll recall this entire process as it ends.

But we’re in, my case was very quickly accepted by a prestigious, well known law firm and someone very senior within that firm (with whom I have a very, very tenuous link; I was immediately reassured I was doing the right thing. They believed in My case and would support me as long as I needed.

I was warned it might take years to resolve and I feel it will, this process is slow. I do know that after delays my medical notes from the surgery / stroke day have been submitted and eventually I will receive a Copy which I can’t wait to see; I have thoughts and will likely find more.

My last post was all about the progress on my one year since the stroke and being pleased with the achievements I’d made.

But I can’t know peace, life doesn’t allow it.

On Tuesday while in work I got a call (withheld which normally means it’s nhs) and it was my long term cardiologist who I very much like and one of the few people who I let call me my full name as they always have done. 

“Benjamin it’s Dr X can you talk?”

“Of course.” 

I was sat in my shared office in the middle of my work team at the time.

“It sounds noisy, are you in work?” 

“I am, do you need me to go somewhere quiet?” 

“No it’s fine but I hadn’t realised you’d gone back to work, well done you.” 

“Err thanks.” 

My mind was bubbling, with what the nature of the call was, it could be as simple as my night time data synch had failed

It wasn’t. I’d had an MRI just before our holiday. 

He had the results and on the phone diagnosed a potentially severe condition “what I need to do rather quickly is get your existing cardiac hardware out and replaced with more robust kit.” This had potentially been their plan for the past year anyway, we’d had mini discussions around this before

“Ok…but i am not returning to hospital X (where I had my stroke during cardiac surgery that ultimately didn’t work either). 

“Oh, ok. In which case I need to look further afield which adds more delay.” 

“That’s fine and it gives me time to think” was my pretty diplomatic response 

“Benjamin I think it’s important I see you soon in person, with your husband and parents, my secretary is going to phone you shortly with my next appointment, meanwhile I’m going to book in one last scan urgently”. 

For yet another time my world fell apart, the condition we were discussing isn’t something simple, being told me and my family were needed means it’s not good news and the speed of reaction isn’t agood sign either. 

I took myself out of the office and sat outside to think for a little while, phoned my parents (on holiday, abroad, natch) and Rich. Not long after back to back calls booking in the scan and the face to face meeting within the week

I’m here. One again, debating pros and cons of surgery, feeling very much sure I don’t want any further surgical interventions, but aware that option might not even be my choice . If life had turned out differently and I hadn’t been left disabled and with a non functional limb post stroke after my last surgery I might be more invested, but I currently feel like my quality of life isn’t worth fighting for but I am aware that sounds a bit defeated already and some of my family think it’s a selfish opinion

I’d strongly argue against it being selfish; I’ve had a rough few years consecutively and the past year has been truly awful, I’ve never shied away from expressing the lows and I don’t think anything is going to improve the situation.

Let’s see what the next week brings.

I’m a silent fuse
I’m a tightening screw
And I might be everything
That is wrong for you

Because I’m fractured

~🎵 Fractured, Hurts (2020)

This is a wordy one, grab a drink and settle in.

It’s 365 days or exactly one year since my surgical cerebro vascular accident (their words not mine) led to an ischemic stroke and when I came round from anaesthetic couldn’t talk nor move the entire left side of my body.

What a year it’s been, after significant hospital time I, somehow, got home about 9 weeks later with just about the ability to stand which took a long time to master, walking took even longer, who knew it was so difficult?! My walk is still awful looking , requires huge effort and painfully slow, but I can walk, and the past week I was in Norway exploring the fjords with snow, ice, hiking and fun.

I’m aware in the stroke survivor community some people celebrate their anniversary but it’s something I am purposely choosing not to. Anniversary’s for me are for celebrating life, love and people. I’m not going to celebrate the thing that still feels like a murder. My life was taken from me, yes there’s more to life than fitness but the impact of an impaired arm and hand remains. I miss my fitness, I miss performing my full work role. I miss hugging people, I miss playing with my dog, I miss the gym and gymnastics and the body I had from doing those. One day I’m sure there will be remuneration from this but not yet.

Maybe saying it felt like murder is a tad dramatic, attempted murder maybe, I’ve lost some core elements of me but I’m still here. I’m working, I drive, I earn, I contribute what I can in areas where I can.

Maybe it would have been better if I’d not survived it; I’ve played this thought over in my head a lot the past year and I’m no closer to any answer.

For those that chose to celebrate their stroke anniversary, good luck to you, everyone is different, as long as you are happy and here you have my support.

What have I learnt this year?

⁃ how loved I am. There wasn’t a day as an inpatient when Rich wasn’t with me, and usually my parents and or sister would appear too.

⁃ How many friends I have, at one point I had to have a diary of when people could visit it was so busy. When I got home my birthday / return party saw my house absolutely chock full of people who cared for me.

⁃ I’m a determined, stubborn git, to those who know me this isn’t new information but I don’t think I’ve ever recognised it until absolutely pushed to my limits.

⁃ Life doesn’t have to stop because of one disaster, no matter how big, there’s people, skills and adaptions in the world to help, I never thought I’d drive again and when my very nice, new car was taken away I was absolutely gutted. 10 weeks later I had my licence back, was driving a slightly adapted brand new car that is still pretty nice. I’ve managed holidays, boys weekends away and lots of pub trips.

⁃ I’m good with words. This blog is my testament of this, it takes me time to plan out a post, piece it together and sometimes carefully craft it. I love the expressive outlet it gives me and that it’s often a great tool to clear my mind a little, plus I see the impact it has on my readers through the views, interactions, emails and social media messages I get. I’m proud of Stroke and Mirrors, what started as a silly way of documenting hospital life has evolved into something bigger. I might be busy with work now but I’m always planning posts and my phone notes app is forever bubbling with ideas, I’d like to cultivate and grow it a little more.

Hey, little me, are your parents home?
Are you dancing in the kitchen, hitting high notes?
If you only knew what you know now
You wouldn’t be afraid to sing so loud

🎶~problem child, Jude York 2024

Nb: this one of the few blog posts I’ve ever written “live” as in the actual day, it’s usually after a few days of processing and editing I’ll write things up, sometimes months , my draft tab on the blog system is huge.

Where am I now?

11 months post stroke / cardiac event, I’m in work routinely a couple of full time weeks completed and now pushing more on site hours, the past few weeks have seen a significant increase (at my request for multiple reasons) in on site activity, I’m finding routine, structure and set daily goals are doing me the world of good.

Body wise, I’m seeing continuous leg strength improvement, upper limb remains stubborn but is still getting daily physio, self led.

I’m attending robotic therapy once a month, after 5 months of zero contact I’m about to be picked up by nhs community physio, I still do monthly soft tissue work with a specialist who makes such a difference into how my body feels.

Physio wise I’ve currently paused private physio as it’s become such an expense, my favourite physio A1 wasn’t based particularly close either so meant a long drive each way. Self directed we’re in the local gym 3 times a week (me and rich) for strength work, hydrotherapy and some sauna / hot tub time. I have a goal of walking at least a mile per day and trying to improve my speed. I’ve just started with an nhs provided leg FES device, it works but is fiddly to set up and looks unsightly with wires from my hip down my leg and into my shoe. The clinicians running the FES clinic are delightful and very optimistic it can make a real difference. I still attend a 2 hour disabled gym group every Wednesday morning which is nice, a really lovely group and a good facility

Yesterday (Tuesday) id done 4 hours at work, on site, been really involved in some general day to day workings and got some of my own objectives complete, I left work with a diversion to the FES clinic to collect an additional item to try and make it a bit easier to use. Once again driving into mostly unfamiliar places, solo, getting myself out and about dealing with real world environments. Got home and did a bit more work to clear my mind.

Today (Wednesday) is my day off, I don’t work Wednesdays routinely, but everything is building to our first post stroke big foreign holiday which starts on Friday. There will be plenty of posts about this I’m sure, in the meantime make sure to follow me on instagram and threads @thebenrm which will likely get many annoying updates, apologies friends.

This morning I had expected a couple of busy work days to knock me a little but somehow didn’t, maybe it’s the routine 🤞

I was up and ready to head to disabled gym group with dad, even had time for a cup of tea before leaving.

Had a great gym session, I’d tweaked my routine and enjoyed it for the variety.

Afterwards, me and dad nipped to a travel agents for him to sort something for his upcoming holiday. I tried to get some currency while there but no dice, I did however go into a clothes shop to look for a hoodie as I’m going to need layers for our holiday. Alas it wasn’t exactly what I wanted.

Dad dropped me home, quick shower, lunch and ready for a soft tissue session. Set off with plenty of time but our single track road was blocked by a works van, quick 28 point turn and alternative route sorted; how’s that for executive thinking problem solving and driving?

I Had my hour soft tissue where it was noted how much I’d filled back out, chest and shoulders particularly, my stance is better and even my confidence was noted to be improved. Lovely stuff. They really worked some soft tissue niggles out too and we instantly found some better movements. We had a great chat for the full hour too, just a great all round session.

I then drove to the big shopping centre. Parked up, wandered in, got some currency. , first try, great.

Then set off looking for a barbers, my long term barber and friend (barber post link) has moved away I knew of 2 in the centre, annoyingly both were closed as in closed down, the second one was actually a fair old walk. For me, to get all the way there and find an empty shop.

At which point I decided I was leaving . Walked back to my car. Remembered a barbers in the town centre. Drove there. Also closed down, has there been a run on barbers or something I’ve missed?

I went home for much needed tea and decided there must be something in my little village and I was adamant I wanted my hair cutting before the holiday. I remembered where there was one, unassuming from the outside. But once in I was met by 2 lovely barbers, a great cut, hot towel shave and good price. I didn’t even have to talk about my walk or history, I am so bored of talking about it, it was refreshing to just go in, be a customer, and leave.

Afterwards I went home, we did a food shop, some last minute holiday bits shop and I swapped the top I’d bought earlier for the correct one.

My day off had involved: gym, shopping, holiday organising, getting a hair cut. It’s the most me I’ve felt in a long time. Long may it continue., the only thing missing was a sunbed session but I’m not quite ready for that yet.

If you call my name
I will run whether or not it’s tonight
Or the life to come
Or the life to come
Or the life to come

🎶the killers – life to come 2017

I was asked by someone recently what would I do if I woke up one morning and suddenly had no stroke symptoms what would I do.

My first thing would be to sit up and lean back with both arms, probably have an incredible time with my husband(😇), shower, wash my hair and face with both hands.

Get dry nicely.

Dress myself putting socks on properly and I would 100% put a hoodie or long sleeve top on, just because I could do it easily . I’d Style my hair with both hands. I’d put boots on and tie the laces.

I’d eat something in a bowl that needs 2 hands.

Make my husband a coffee and take it to him.

.

Later in the day I’d go to a supermarket and just buy whatever I wanted without worrying about carrying or packing.

I’d cook a nice meal for me and my family, id make Yorkshire puddings, roast and carve a chicken. I’d open a nice bottle of fizz and I’d open it with both hands to celebrate using it.

A million dreams are keeping me awake

🎶A million dreams – Hugh jackman 2017

I might spend my evening playing games or just walking around touching things. Or go to the gym or gymnastics.

I’d hug everyone I could with both arms.

These are all super mundane but it’s things I miss

Not figurative, but a genuine fence

When myself and Richard bought this house 4 years ago one of the big reasons was the proximity to the woods and fields. The fence is 150 feet from my front door.

Beyond the fence is a long bridle path that hugs the edge of the woods to the right and has crop fields on the opposite side, there’s also a pub at the end of the path.

Prior to the stroke, I would spend hours a week in the woods walking our dog and in the summer launching the ball on the crop fields. We sometimes walked to the pub too, if the path wasn’t muddy or it wasnt too dark.

Once home and beginning to walk I developed a bit of an obsession with the gate and what was beyond it. I think subconsciously my brain saw it as freedom and normality.

Very early on in my walking, still needing a pole as an aid one evening I decided I wanted a little walk, got my shoes on and walked. Rich was cooking when he realised I’d gone and it ended with an argument on the street, I had been naughty and had to apologise. I got a stern telling off by an occupational therapist for it too.

A few months on and I managed for the first time (still with the stick) to walk Marina just a little bit up the path.

It has become a challenge, I’ve tried to get to the woods a few times but been stopped by mud, rain, horses etc. I did walk it with my sister and her dog recently. Her dog had a leg injury so needed to walk slowly so was ideal for me shuffling along, my Marina hasn’t quite grasped that she needs to walk slowly with me as yet, she wants to be full speed all the time, one day girl I’ll get it

I’d had a very busy week, I’d worked my first full time hours (well mostly) week, 90% from home and one afternoon at a work event, my day off had involved a huge gym session where I’d managed significant strength increases and tacked on some additional non strength work afterwards.

Come Friday evening, like I was pre stroke, I was pleased the week was done. Richard had gone out for a meal and catch up with his friends but rather than spend the evening alone I invited my best friend over for beers, we had a very nice evening too. We could have done it in the pub if it weren’t for walking being so slow and laborious and the continuing frustration of not being able to carry 2 drinks.

In my head I’d essentially written Saturday off as I expected to be very tired. I was, but not flat, with an hour laid in bed doom scrolling and allowing myself to rest I decided mid to late morning was enough. Got up, dressed and joined Rich downstairs. My dad briefly nipped over;

Saturdays usually revolve around me going to my parents and eating all their food and seeing my sister and her kids, just a nice bit of family time. it has continued post stroke even more so now I drive myself there. currently mother is away on holiday so dad came to us to do one quick job we needed help with.

Once that was done, I had a bit of lunch. Rich walked the dog and we made a plan to do a shop for food for dinner and some wine, I had, roughly, in my head planned a grander day out but Rich was grumpy, not at me, just the world, so I never raised it. I went for a walk, Rich cut the grass. Come evening we had pizza and drinks, just us, quiet but nice.

Sunday I expected the week to catch me and be flat all day. Surprisingly I was up, bright, sparkly and ok at mid morning, showered, dressed and told Rich I wanted to take him out, I’d drive us to the place I wanted. We could get food, look for a gift and possibly some clothes.

Rich agreed, said his bad mood had lifted and off we went.

I drove, it’s a fair-ish drive, no stress,

Clothes shop was great, it’s a designer led shop and between the realisation I couldn’t afford all the clothes I liked and neither did I have the ability to try them on, I left feeling quite sad, in my head it was a snoopy moment with a cloud over my head as I walked out,Rich wasnt sad he was hungry so we went into a restaurant, it’s a chain I’m familiar with, Rich had a very late brunch, I had tapas (all of which was edible using just a fork or the one hand). We both really enjoyed the food.

One quick browse for a gift was fruitless and we left for home, both regretting we’d driven as we fancied a drink outside the restaurant in the rare sunshine and the cocktails looked great.

We talked in the car driving home about a pub visit with the weather being so nice, but we didn’t want the dog alone all afternoon. Slight change of plan and we’d walk to our closest pub, all 3 of us and sit in the sun.

We did, I walked there, keeping up with Rich and the dog. Had one outside but it dropped cooler. I went inside to finish my drink, Rich was going to walk back with the dog home at the speed she likes then return in the car to get me. It worked out brilliantly.

Once home we snacked. Caught up on tv and chatted through the evening. It had felt a brilliant weekend.