Stroke and mirrors

This post is a pure recollection of memories around one person, locations, names and identifying things have intentionally been altered. Trigger warning: trauma and death.

In 2012 I qualified as a registered health care practitioner in a very specialised career that isn’t publically well known but is vitally important. I had been a support worker and trained in one hospital and a local university before qualifying; I ended up taking a job as a newly qualified practitioner in the next town over which had a mid sized hospital. I was very new; newly qualified, an outsider to the hospital and the change from support worker and student to regulated practitioner was quite a big jump.

But I loved it : the hospital, department and team, even the town it was all just perfect for me at that point in time.

One of my first out of hours shifts was a Friday “late” shift 11am-9pm so you’d see off the back of the routine day activity then be around for early evening until the night shift arrived. My role meant I could be called on to attend emergencies that needed airway or anaesthetic interventions. Normally I was the only person of that skill on shift with nurses and possibly one senior person that may or may not have similar skills to me.

That Friday evening my emergency bleep (yes an 80s style pager) announced an out of hospital cardiac arrest was arriving in A&E and I was needed. My senior person that night was a man: TS who was of the same profession as me but hugely experienced and a lovely man. We set off to a&E together. To start with I set equipment up while he hovered just watching. Our very ill patient arrived. For every time a cardiac output was restored it would stop again.

The mixed team present consisted of: us, anaesthetics and a&E staff ended up spending almost 2 hours with the patient. Myself and TS doing cycles of chest compressions, dripping with sweat and out of breath (if you’ve ever done chest compressions you’ll know they are exhausting). The present consultant anaesthetist providing the odd breath via a bag, an a&E consultant leading medications etc from the foot of the bed. After the 2 hours of repeated failure it was agreed we would stop intervention.

At this point the a&E consultant disappeared returning with 2 paper cups of water, he offered one to the anaesthetist and sipped the other himself; TS looked at him in disbelief after giving a knowing smile then without missing a beat said “no thanks it’s fine, me and Ben need a pint now anyway ”- dripping in both sweat and sarcasm, he shot me a wry smile I can see mentally now.

It had been my first resus event, and my first patient death. We headed back to our department TS put his arm over my shoulder “for a skinny lad you were getting some big compressions there” (I’d not found a gym or food at this point in my life). He kept a loose hold on me through the corridors as we retreated, he continued checking if I was ok. Once we got back he made me a cup of tea and he suggested I write a reflective bit of documentation over the weekend.

A little later we finished shift, I was parked very close and he had a fair walk home, so I offered him a lift. We stopped en/route at a pub for a pint (shandy, obvs) where he again checked I was ok. Told me to get a few beers on my drive home and decompress at home . After dropping him home I stopped at a shop, got beers. Spent my evening decompressing, with a beer as told.

We continued to work together for 5 years until career progression took me away.

As with scenarios like this, we lost touch, not through anything other than circumstance.

In 2024 our paths crossed again. Unintentionally and for poor reason.

I was 9ish months post stroke, planning a return to work in spring 24, but knew I couldn’t work without driving, my OT had referred me in the autumn of 2023 to a local driving assessment centre.

There’s a whole post about driving “here”

.

I set up my hours driving hours with the assesor, lovely chap, we talked over so many things, we had some similar interests. He was interested by my job.

A few sessions in he started a tale of “I’ve only ever had one person that does your job and now I have two of you and I think you know each other” the conversation continued, my interest piqued and TS was his other client, he’d had some traumatic injury and lost a leg, also needing adaptions had gone down the same route I had to return to driving.

We started texting each other. Comparing shit health and life stories. we joked once we were both driving we’d meet up half way between us for a pint and moan together.

A few times I thought of him and meant to book a date it but never got round it it.

I was then heart broken one day when I read on social media that he had passed away. Furious with myself I’d not made time to see him.

I did manage to attend a memorial service at his work, my old work. Which was an event in itself.

TS if you can read a blog in the afterlife just know I’m sorry we never caught up, I think of you randomly,

all my best. Ben

Here, where the world is quiet; 

         Here, where all trouble seems 

Dead winds’ and spent waves’ riot 

         In doubtful dreams of dreams; 

I watch the green field growing 

For reaping folk and sowing, 

For harvest-time and mowing, 

         A sleepy world of streams. 

I am tired of tears and laughter, 

         And men that laugh and weep; 

Of what may come hereafter 

         For men that sow to reap: 

I am weary of days and hours, 

Blown buds of barren flowers, 

Desires and dreams and powers 

         And everything but sleep.

✍️The Garden of Proserpine~ Algernon Charles Swinburne, 1866. I normally end posts on a music lyric quote but today’s gets a poetry verse as it’s not a normal post.

While I could, and I absolutely do, go on about big things I miss being able to do: there are obvious major things like properly showering with both arms, using cutlery, preparing food, gymnastics, going to the gym, my job role, etc etc (ad infinium) it occasionally, fleetingly becomes apparent there’s some “little ” things in life I miss, rather than ignoring it or lamenting too much I’m going to compile an ever evolving list:

• The feeling putting your arm through a jumper or hoodie where it’s soft, thick material and feels comforting and nice
• Tucking your hands in a long sleeve because it’s a little cold
• Typing with both hand on a computer keyboard
• Pointing to things
• Feeling my face as I wash it or put moisturiser on
• Tying a shoe (generally putting on shoes and boots; not being restricted to a couple of pairs)
• Holding a hot drink cup with 2 hands for warmth
• Putting my Hands in pockets
• Backpacks and bags
• Holding a phone and typing with both thumbs
• Being able to hold small pots and eat from them: say yoghurt, porridge or ice cream pots while they aren’t my favourite things to eat just having the option taken away is a frustration
• Holding a cup or glass with both hands
• Holding someone’s hand
• Opening a door so I can carry on a phone conversation with my phone in my functional hand or hold something
• Holding my iPad steady in one hand and using it with my working one
• Clapping
• Putting on a suit jacket or blazer (without it being an ordeal) to look smarter
• Carrying 2 drinks, especially pertinent in a pub where I either end up doing relays or looking lazy /selfish.
• Feeding the dog
• Untangling wires
• Scraping left over food into a bin
• Emptying a bin
• Carrying things upstairs
• Dancing, ok I’ve never been a good dancer but it didn’t stop me jigging around a bit, hands firmly grasping a drink or in my pockets
• Using water bottles and just opening any bottle
• Tightening lids on bottles
• Putting clothes away
• Packing (and unpacking) stuff for a trip
• Getting clothes from my wardrobe, off hangers,
• Gesticulating
• Hugging
• Being able to carry my work laptop / iPad and work at the same time, I miss the flexibility of saying let’s grab a coffee and typing notes as not feeling stuck to my desk
• Being able to multi task such as read and drink a cup of tea but only having the one functional hand means it’s an either or scenario
• Shaving my facial hair and pulling the skin taught to get it all.
• The feeling of a steering wheel
• Gloves, gloves! GLOVES! (It’s currently cold)
• Typing with 2 hands (again)
• Opening cans
• Pouring drinks
• Opening drinks bottles
• Filling a kettle
• Textures and knowing what things feel like, I still have sensation but sometimes I want to grab say a jumper in a shop and feel its softness or the texture of some food
• Shaking hands and then using the left to clasp over or pat a shoulder
• Holding interior car door handles and resting my arm on the arm rest
• Car doors in general, opening a door with one arm, throwing it back and trying to get out is a pain
• Putting a hood up
• Holding a zip/ neck tight on a jacket because there’s a chill
• Scratching an itch, I feel like a bear often using door frames, tables etc etc to scratch myself
• Not being able to zip a jacket or coat up if I’m cold
• Closing smart trousers with those metal clip things (I must google a name for those)update: an inside fastener, apparently
• Putting a dressing gown on for quick comfort or a hoodie / sweater for warmth
• Holding someone’s shoulders so I can get by them
• Cooking and prepping food to have control on what I eat
• Carrying a plate or tray e.g at a buffet or fast food
• Not being able to use cosmetics I want e.g a nice face wash because I can’t use the dispenser
• Not being able to use nice lip moisturisers because I can’t open or hold them
• Holding a door open for myself and/or other people
• As a person with male genitalia , I get to stand up to wee, being able to hold trousers with one hand and the other to wee was so much easier then just one.
• On that theme closing a fly; especially a button one is difficult with one hand, regularly people tell me my fly is open; which is frustrating and embarrassing.
• Putting headphones on, I end up poking myself in the eye and looking like I’m wresting the headphones.
• Similarly: sunglasses
• Not being able to peel fruits, I fancied a satsuma for over a week before I could get rich to peel and segment one
• Not being able to use my pockets. I have always carried: phone, keys and wallet. Now it’s a singular option or a bag
• Putting or removing cards in my wallet (and to a lesser extent cash which I’ve just abandoned using)
• Squeezing a spot on my face, yes I still get them at 30something but I can’t do anything about it
• Holding paper still to write on it
• Being fast enough walking to rush over a road.
• Not being able to nip in a shop and get a drink and/or snack on my way home having neither the speed nor ability to carry and pay for things
• Buying clothes without worrying about how I’d put them on
• Holding a notebook and writing in it. Instead I scrabble around for a surface to rest my book on
• Not being able to wrap a towel around my waist or shoulders ; let’s say I’m at hydrotherapy or the gym in a changing room trying to hold a towel to maintain some degree of dignity, nope, just drape a towel over my shoulder and hope it reaches low enough.
• Just drying off in general after a bath or shower, putting on a dressing gown too. I long for a relaxing bath, getting dry and sitting in my dressing gown (I can and do those things but it’s hard work and time consuming)
• I’d like to cut my own nails, I’d settle for biting them
• Opening deliveries, parcels and packing.
• Grabbing someone’s hand and running to see something being all excited and fun
• Reading a book or news paper with the feel of the book in my hand; I’ve swapped to a kindle but it’s just not the same, I miss the tactile element
• Just being able to move faster and with less thought
• Pressing and subsequently using anti bacterial gel dispensers
• Opening and closing car doors, I have a permanent bruise on my shin where car doors always hit me
• Putting seatbelts on easily
• Not being able to wear a backpack
• Struggling with other bags (opening zips with my teeth, just shoving stuff in and hoping it stays
• Wearing belts
• Wearing jewellery: ok I don’t have much but there are bracelets, a thumb ring and nice watch that will now just sit gathering dust forever
• Being able to buy/ wear / zip appropriate clothing, say coats
• Getting new tech and being able to use its full functionality
• Using wallets, bags, cases etc properly and functionally
• Being able to cook and prepare meals ;e.g I can. Using one hand, put a joint in the oven but not carve it
• Not being able to eat an ice cream due to pots not being usable or just the trial of am ice cream cone with one hand
• Walking down stairs holding something
• Putting on body creams: moisturiser or sun cream
• Not being able to bbq
• Scratching my arms, legs back
• Feeling and holding handles on things e.g water bottles
• Waking up in a morning and not having an immediate clonus spasm in my leg, arm or both
• Using note books that need holding open, I’m stuck with ring bound ones
• Not being able to open windows that need both handles holding open and pushing together
• Packing shopping
• Closing car doors
• Seatbelts both on and off
• Not being able to do a bbq
• Not being able to tie shorts (both swim and regular)
• Washing my hair with the shower hose. Also- using a hairdryer and styling
• simultaneously.
• Playing handheld video games, I’ve never been much of a gamer but I like the idea of a distraction and focus
• Making myself,and others hot drinks or cold / cocktails
• Halloween:
• ‘It’s what gays do, munch butts and celebrate Halloween’
• I can’t decorate Halloween or Christmas and I love a decorative plan
• Costumes; I have so many great ideas on costumes I’d wear but can’t construct or get them on
• Yoga – pre stroke I would occasionally do yoga, I was terrible at it but I was fairly flexible and I enjoyed the time doing it.
• Putting paper in envelopes and filing papers
• Using technology as intended
• Plugging chargers in: phone, headphones, iPad, kindle etc
• Washing a cup, plates or cutlery etc by hand.
• Filing papers
• Reactions around clothing choices. (I.e: opening the door to rain and not going to get a rain coat because it’s time consuming and difficult)
• Putting the dogs harness and lead on, she has learnt to try and position herself to help but it’s stilll fiddly
• Not being able to eat things like wraps, fajitas, burgers and sandwiches because I can’t hold the filling in.
• Not being able to change the battery on my vacuum cleaner
• Not being able to change the fluid on my floor mop
• Not being able to top up my electric diffuser without 3 trips and moving elements one at a time

Last updated: February 2026

Fairly recently I’ve had access to a Neuro psychologist who is yet another person in my ever growing therapy arsenal. I had a psychologist in the very very early days, mainly to help me adjust to the initial shock and heart break, beyond that I was left to deal with the psychological impact of suddenly becoming disabled and my life highly changing on my own. I could have possibly pushed for more earlier than now but I’m a pretty strong and stubborn git. Until things got dark a few weeks ago, I pushed for help and lo and behold now have another person in my corner, it’s more of a bus stop than a corner.

One of the things me and the psychologist have talked about in our sessions is how guilty I feel about the impact my health has had on everyone else (rich, my parents, my kids, my friends); in the sessions We sit closely , she types notes throughout, she paused, looked at me, adjusted her position, looked me in the eye and said slowly and with purpose “Ben, it isn’t your fault” then further elaborated this stance but that first statement has hit me so hard.

It’s become another little internal mantra when I worry about impacting on other people. I see my psychologist sat at the table leaning in and saying “Ben, it’s not your fault”.

She’s absolutely right, of course, it isn’t my fault. I’m just dealing with the aftermath. As are my family and friends. I wish none of us were, but we’re out here dealing with it day by day.

I’m hanging on your side of town
I notice when you’re not around
Can’t keep my cool, I’m burning inside
A broken heart, beat barely alive

–Your Side of Town, The Killers 2023

It’s October 2024, I’m almost 18 months into post stroke life and things are well, wobbly at best.

Work, despite some amazing opportunities, high achievements; doing a big online presentation to people who don’t really know me, which went exceptionally well and great feedback; there’s other threats in my peripheral and I’ve absolutely noted a lack of focus and enthusiasm towards work where as a few weeks ago I was almost laser sighted and determined.

Life, the legalities surrounding my stroke aren’t proving to be as straightforward as we’d anticipated which had rumbled us. I was left with a choice of leave it and accept life is just unfair and cruel or fight harder, I think I, no, we, need some justice and recognition so I’ve decided to put that battle helmet on and push on.

Health I’m trying to commit to 3 gym sessions a week and really push strength and mobility across the board but again finding I’m not always enthused or focused, but I do love being in the gym.

Mental health after a really rocky few weeks I essentially demanded help, I now have a neuropsychologist in my care arsenal, a lovely woman; while we’ve not done any real mental battle stuff just sitting with someone who doesn’t know any version of me and talking life over while being completely honest and open “the encyclopedia of Ben” as we’ve called it has felt worthwhile in itself.

An old work friend has recently passed away, he had been very influential when I first qualified as a health professional and was one of life’s good guys. We’d not spoken for years but earlier this year we reconnected under a “small world” scenario, while both on the rougher side of life altering health events we’d both got the same man helping us regain driving licences, the driving man worked out we probably knew each other and set off a chain of events where we’ spoke, we had planned to meet for a beer and story comparison but sadly never got round to it.

His passing had absolutely played on my mind, some very similar circumstances and I genuinely hope he’s found his peace, he deserves it,

Social life – we’ve been very busy recently. Spending one weekend with my eldest friend and his family in the midlands, we did a long walk to a pub, had food, beers, chatted, went to their house did more of all the above and we stayed over; pre stroke this was a bi monthly event and it feels so good to get this back.

More recently we were in the midlands again, natch, with other friends. We went to a gin distillery, had food, drinks, a walk by the canals and more pubs before spending an evening in their house drinking wine and chatting, again something that pre stroke was a regular event and feels great to return to.

I’ve also reconnected with some old work friends, through the aforementioned death of an old work friend, I spent some time in that work place, seeing people I haven’t for 6 years. I Left to a barrage of messages asking to meet up again soon; I was incredibly wary going in, I’d not seen most people in 6 years, many people didn’t know I’d had a stroke and look as terrible as I do, but I was welcomed, fussed, hugged and left pleased.

It’s been an odd week, at times I’ve felt as if I’ve been an external observer of my own life, I’ve been apathetic, unenthused and aloof; apologies if you’ve encountered me being off recently, life is feeling weird but I’ve recognised it and hope to get my head a bit more sorted over the next 2 days.

The slow lane
A small town
Only diesels dance
These streets
Weren’t meant to house
Jet fuel engine dreams

🎵-boy, The Killers, 2022

No, I’m not singing Grease; don’t worry.

With my 9weeks of in patient time starting in May23 I spent late spring / early Summer as an inpatient. Typically 2023 was one of the few times the UK had some nice spring weather.

Thankfully hospital 3 was where I spent most of this time. The ward had 2 garden spaces; my family and sometimes the staff would get me in a wheelchair and outside for fresh air (the ward was in the lowest level of the hospital, essentially the basement; very hot with no air conditioning and despite my room having a window had zero air flow, so I was always happy to be outside and not staring at the same walls

Garden one ‘the stroke garden’ had picnic tables, benches, flower beds and greenhouses that patients with upper limb usage could utilise. One day I spotted a memorial plaque on a table for a male patient who passed away from a stroke not much older than me, it did taint my enjoyment of the garden a tad that day . I did however another day have a bloody lovely afternoon in that garden with Rich, 2 very good friends (including my site editor)where we enjoyed a big picnic in the sun with alcohol free wine from a water bottle . Another time me and Rich took my iPad out to watch Glastonbury outside together, sat in the sun, held hands and listened to the music

The other garden wasn’t as nice, it was really the hospital staff garden with a mix of picnic benches and Exercise equipment which included parallel bars that I pined to do some gymnastics on.

I spent so much time outdoors that I think I was the first patient to get a tan while residing on a ward.

My nights were spent dreaming of making our home patio a haven; it’s quite spacious, directly off the living room, we’d already done a few bits to it pre stroke. Because we’re semi rural it’s mainly very quiet too just the odd bird, town noises in the distance and a few local dogs to be heard

During my sleepless nights of longing to be at home, overly warm and likely a bit depressed I started ordering things for outdoor living: rattan furniture, a giant sun umbrella, pizza oven , outdoor rug. I had grand images of essentially an outdoor living room. But neither the funds, physical capability or space to do it.

Rich did build some bits when they arrived and we used the space a while; especially for my birthday / homecoming when 50+ people came over.

Spring 2024 was unbelievably wet and rubbish. I thought we’d never get a summer then it suddenly came. I bought a little fountain and more cushions.

Quite often after a working day I’d sit ( particularly when off the next day ) with a beer, lighting on, fountain trickling. Birds chirping, Marina trotting around . Just enjoying being in my home; this isn’t a huge achievement but the previous year I’d have killed to do it. It’s a small thing really but I don’t take it for granted,

Autumn 2024 we’ve just packed the furniture away for winter, let’s see how I am come spring 25 and what I’ll be doing then come next garden season

Don’t stop thinking about tomorrow
Don’t stop, it’ll soon be here
It’ll be better than before
Yesterday’s gone, yesterday’s gone

Why not think about times to come?
And not about the things that you’ve done
If your life was bad to you
Just think what tomorrow will do

• 🎵Don’t stop- Fleetwood Mac 1977

Off shooting from my low (link pls) post about not being able to put the boots on that I like and ones that make me feel like me.

It got me thinking about all the little individual things I’ve lost and that then made me think it’s a bit like identity theft.

Let me elaborate, or try to

What makes a person individual? Let’s say you were describing your best friend to a stranger; I’ll do this as I go through describing my best friend Sam.

He’s pretty short, about 5’5 (he says 5’6. But I have doubts) I always said I was 5’8/5’9 but the day before the surgery and associated stroke I was weighed and measured and they said 5’10. My medical notes say that now so I’ll stick with it. The stroke hasn’t changed my height but I’ll keep the extra height I gained the day before.

He’s skinny, it’s funny how much emphasis we put on describing people’s builds and how sensitive it can be for some people. Pre stroke I think would have been described as muscular; I’d worked hard for years to ditch the skinny label; many, many hours in the gym and inhaling a high protein diet I’ve lost all that and can’t gain it back

I’d then tell you he’s got brown hair that’s thinning, short and messy.

My hair is usually very tidy in a skin fade with a textured short bit of length on top. Pre stroke I was quite particular my hair looked good but it’s impossible to get it how I want with one hand.

I’d tell you he’s always wears a check shirt and jeans and brown boots.

Pre stroke I was known for dressing incredibly well. Normally in a brand called Blakely. Their clothes are designed to be pretty tight and show off chest and arms. It’s futile wearing them now as I’m no where near the shape I was. Jeans that showed off my legs are also a no go; to get them on is a battle that would need a helper so I’ve lost more independence there.

Shoes, I miss wearing whatever shoes I like. I own so many pairs of boots, many timberlands, they are difficult to get on and impossible to tie.

Jackets and coats: it’s been a running joke for years about how many jackets I own, but I’m stuck without the ability to put one on easily.

My favourite outfit is a late summer / early autumn throwing a hoodie and shorts on. But long sleeve tops are an absolute nightmare and take two people. It then becomes a whole multi person time consuming saga and defeats the point of a quick layer.

Aside from his appearance I’ll tell you Sam’s hobbies:

Theme parks and travel, it’s one of the reasons we became friends.

Beer, he loves a drink, another reason we became friends.

Christmas, Sam’s job revolves around Christmas and he loves it

My old hobbies were the gym and gymnastics but again it’s something I can’t do anymore,

So without my hair, clothing, shoes or hobbies I feel like I’ve lost the unique things that made me, well, me.

---

Apologies to Sam for this entire post and the less then stellar description I’ve used, I love you bro x

I’ve had a few days of feeling so low; I’ll detail each part of the day that frustrated me.

Waking up: I want to lean on my elbows, stupid arm doesn’t do anything.

Showering. I want to use both ask and hands, I miss a real shower, I’ve forgotten what running my hands through my hair feels like but I know I used to like it,

Putting toothpaste on my toothbrush, a really minor one but you try balancing a cylindrical toothbrush to get toothpaste on it twice a day when it should be a simple 2 second job

Dressing: permanently at the top spot of frustration list, I really, really hate not being able to quickly put on my clothes and needing help. (see also not being able to look through my wardrobe.

Running down the stairs. Yes I can do stairs and it took a while to learn but it’s slow and I miss being able to fly down.

Breakfast: I’ve never been a breakfast fan but I’d pull out someone’s eye with my teeth to stand with a bowl of cereal in my hand. I can’t even open the cereal never mind hold the bowl. Or I’d like to take a protein porridge to work like I used to and eat that. I can’t hold the pot up to the hot water boiler to do it nor hold the pot to eat it.

Shoes; I’m permanently restricted to those ugly slip on shoes; I have 3 pairs now so I can change it up a little but I also own so many pairs of formal shoes, timberland boots and more that will eventually just get thrown away. What a waste and like clothes it’s just more of my identity that’s been removed. Me and Timbos have gone hand in hand, or foot in boot, for years.

Driving, I appreciate I can drive but I miss the feel of 2 hands on the wheel, waving (or giving other gestures) to people, getting in and out quickly, fastening a seatbelt, pressing buttons, not worrying where my arm is sat, pressing the screen, not fighting for disabled spaces.

This specific day I managed to get a rare disabled parking space near work but then realised I’d left my badge in a different car I’d been in the day before so had to go to an expensive public car park further away, already cross at myself.

Work remains a constant disappointment; I miss the clinical activity so much, I can see a huge gap in skills that was my role pre stroke I’ll offer to help and hear “well Ben can’t do x,y,z” it’s a huge frustration.

I left feeling pretty flat and decided after dinner I’d take myself to the gym; I’ve recently joined a proper gym after having it recommended multiple times.

Gym essentials for me: water bottle, headphones, phone and car keys. I’m currently trying a grip claw style device, it gives my hand a resting point as fake grip so I can at least perform some movements without trying to grip at the same time . Trying to even get these items in the car with one pocket and one usable hand is a pain and I needed Rich to get my stuff ready.

Come the other end I’ve got to carry all my bits up 2 sets of stairs and into the gym. It ends up becoming a relay to get my stuff up to the gym so I’m fed up before I even start.

I’m conflicted on being in a proper gym again after a lengthy hiatus and using either the disability friendly gym or the tiny hotel gym we used for a while. I feel like I’m in my proper habitat; I like a gym environment. I can do so much leg strength work and this gym has new, to me, some really good pieces of kit for my leg strength.

Even using the grip claw I’m still finding it impossible to do the upper work I want, sometimes I just can’t get my arm into the right position at all others it’s just not a fit. Which is incredibly frustrating.

I spend half of my time watching other gym goers working out completely fine slowly seething with jealousy, then look at the boys with nice arms, chests and in fitted clothes and remember I used to look like that and don’t (and can’t) any longer. Dejected and walking out like buckaroo with all my gym bits attached to me I left.

I wanted a pick me up so drove to our local shop, to get some sweets but then remember I can’t carry more than one item or a basket, so leave with just one thing, annoyed again.

I’m almost 18 months post stroke. Upper limb has zero progression, I’m at a place where I’m questioning “what’s the point?” And do I just accept this is life and save my time and effort? The darker thoughts follow of if this is it do I want this life?

Everything’s backwards and I’m hanging on
No matter how hard I try I always come undone
Backed in a corner, uncomfortably numb
Watching myself become a shadow of someone

• 🎶Bad life – Bring me the horizon and Sigrid 2022

I’ve tried to write this post multiple times. As someone who struggles with abstract concepts and craves set facts, structure and evidence it’s proved near on impossible for me to write, you’ll see why.

By the time I hit hospital 3, the longer term inpatient rehab unit, I’d started to come to terms with what had happened. Everyone said I had potential, I was young, mostly cognitively not harmed and had enough prior fitness to hopefully make a decent recovery. I’m sure I’ve raved before about the ward and rehab team and how good they were. I, briefly, had access to a psychologist, a lovely woman who took time to explain this was going to be a life long thing and I’d grieve for my old life over a long time, but that was fine.

I remember her giving excellent analogies like when I said I was frustrated I couldn’t recall some early events despite usually having a great memory she told me “your brain records things like on a video tape, sometimes if things get too horrible it will just stop recording to not deal with it” it made perfect sense.

I told her my story about aliens, which was put down to my brain being in shock at the physical assault it had endured and the consciousness of understanding that, combined with lingering anaesthetic drugs and a penchant for watching sci fi and horror in bed. I was convinced from a very lucid dream that I had been abducted by aliens who removed my ‘being’ from my body to experiment on the body.

When returned they had damaged my body or I was in the wrong one and this was why I couldn’t move my left side.

I’m sure my subconscious was just dealing with the fall out as best as it could.

I wait some 16 months down the line for the aliens to return and sort out their errors.👽🛸🧠🤣😱

It started with a low light
Next thing I knew they ripped me from my bed
And then they took my blood type
It left a strange impression in my head -🎵Spaceman, The Killers 2008

I was asked to contribute to Tara’s Life gives you lemons Life gives you lemons blog unsure how to contribute I write a not-at-all-condensed history.

But as ever I looked for my usage so here’s a cross post 😇

Summer 2019 – I woke up one summer night gasping for breath and feeling tight-chested; I assumed it was hay fever and managed to go back to sleep, but I was scared enough to book an urgent GP appointment the following morning. On arrival, the nurse I saw first did some routine observations; she left to get a GP and returned asking questions if I was a long-distance runner or super fit because my heart rate was incredibly slow; I was neither. After declining to go to A&E because I felt ok, I was referred to a cardiology clinic. Cardiac clinic came through fairly quickly and after an ecg and echo I was told my heart was running dangerously low and would need a pacemaker, again I’d insisted I felt fire, I was regularly in the gym up to 7/8 hours a week. Begrudgingly, I was allowed to leave on a promise of going to A&E immediately if I had any cardiac symptoms. Come December, I was on the tram home, my chest felt tight, and I was gasping for breath. After dinner at home, I took myself to A&E, where my heart rate was very low again. I spent my night in resus with the defib parked next to me I was allowed home but told the pacemaker needed to be done urgently and soon brought back for a few days on coronary care until it could go in. 

I then went back to a pretty uneventful existence for several years. I worked as part of the senior management team of an operating theatre department, did home things with my husband and children, and even picked up a new hobby of gymnastics.

My cardiologist was happy that the pacemaker made me safe but curious why I’d developed the slow rate and occasional unusual rhythm. I was referred to a specialist regional cardiac centre. It was diagnosed I had a very rare inherited cardiac genetic disease that was affecting the conduction of my heart and would get worse over time. 

I kept seeing the consultants at the specialist centre as my pacemaker was doing nothing, and irregular rhythms were becoming more frequent and severe. In early 2022 we agreed an operation to burn new electrical pathways in the wall of my heart was my safest option, it would be done through keyhole surgery. I spent all of 2022 awaiting a call for the surgery, continually on edge. 

After another consultant visit in December 2022, the urgency increased, and it would definitely happen in early 2023. In May 2023 finally a date was booked. After a couple of stressful days of it being cancelled then booked again I finally went to the hospital on a Thursday ready for surgery Friday morning. Thursday night I remember signing the consent with a surgical registrar, under complications he wrote: conversion to open, stroke and death but listed them all as <1% chance. I’d previously spoken with the consultant about conversion to open, but stroke and death had never come up over the long 18 months of regular appointments, which felt weird. 

After a sleepless night and a stress poo come Friday morning, I walked myself to the theatre, unaware of the significance of that walk. Hours later apparently on intensive care I was starting to come round more, I remember finding it hard to catch my breath then spotted a tube poking from my left chest which I recognised as a chest drain and quickly worked out that there was a hole in my lung. I tried to adjust my position to sit up and despite trying with my arms to push upwards went nowhere I then tried with my legs and found the same result. Not long afterwards my husband had arrived and was sat with me I was trying to talk to him but no words were coming out. Getting frustrated, I started thrashing about a bit in the bed, which was assumed to be me in pain, and I was pumped full of opiates. This continued for a few hours until there was a conversation about a facial droop I could hear. I pieced it together myself: I can’t talk, my left arm and leg aren’t responding, I’ve got a facial droop, and this is a textbook neurological injury. “Why won’t someone do something?” I wanted to scream but couldn’t. One of the cardiology team eventually came to do a review and pieced together the same I did and called the city neurology service. I then had a CT scan reviewed by neurology, but it was deemed to be too late at this point to try and do anything surgically with the expectation the blood clot sat on my brain had been there for a very long time.

I went back to ITU and spent a couple of days there followed by an acute stroke unit, I could almost see my work office from the bed. After a few days of my husband and parents constantly travelling and being exhausted, it was agreed to transfer me to my local hospital for rehabilitation there. I was transferred early one Saturday evening with a team more interested in their evening plans. I was met at the local hospital by a lovely team interested in getting to know me, putting me in a private room because I was a young man. 

Rehab started Sunday morning. Sitting on the edge of my bed to assess my core strength, I felt drunk and like the room was spinning, unable to hold myself steady I toppled on a physio. I remained there for almost nine weeks with a continuous line of visitors (family, friends, workmates, gym friends) all keen to see me and entertain me. The physio and OT teams would spend hours a day working with me, my speech had returned, not powerful or with tone but I was talking, movement was hard, there was no activity at all on my left side. The team worked me hard and I was permanently exhausted even nodding off during a physio session, standing up became a big goal for everyone and I did it for the first time in the physio room with my parents there observing as they regularly did, we all had a little cry. Once I’d got the standing done we moved onto walking, to start with the physios were dragging me around or moving my left leg for me. After a few good days of progress one Saturday afternoon a lovely physio came in on her day off to do some more work with me, I’d been sat outside the ward in the sun with my family in a wheelchair when she arrived. We went into the physio room, and she asked if one of my family could help as she needed two people. My mum agreed. About half an hour later, with lots of assistance, I took my first wobbly steps and once again cried, as did my mum and eventually the physio. I’d given up thinking I’d ever walk again.

When I finally got home, I needed a wheelchair, a turning device and a shower chair to get me home safely, but it required a huge effort from my husband. 

With my physio and OT team following me home, we continued rehab for many months. After a few weeks at home, I mastered the stairs and went back to my bedroom and bed, which felt like a huge step. Then, I graduated to standing showers, with our en-suite being easier. In early 2024, I completed a driving assessment and, with guidance and practice, ordered an adapted car. In spring, I returned to work. I can no longer scrub in surgical cases, but I’ve found ways to provide other input and be useful.

It’s a long old slog this stroke business; it’s not fun, and daily, I still get frustrated and wish it hadn’t happened. 

Many of the things I’ve mentioned here for Life Gives You Lemons can be found more in-depth on my

One aspect of rehab / recovery I tend to be a little quieter on is the psychological impact, but it’s recently been on my mind a bit after I’ve asked for some clinical psychology input but it’s not been actioned as yet (hooray once again for poorly funded and run community services).

Anger – my fuse is shorter and I acknowledge that I bite or snap somewhat regularly where as pre stroke I was so far removed from any hint of a temper I was metaphorically horizontal, I suspect the permanent frustrations of life just sit in my head waiting for the crack in the dam.

I’m not saying I’ve always been a saint but pre stroke if I’d had a frustrating day I’d take myself to the gym and throw some weights around for an hour or two or throw myself round the gymnastic gym but I’ve lost those outlet options; similarly I might have played video games but it’s a 2 handed thing. So I’m left no real outlets to work out my frustrations or channel my energies when im struggling.

Guilt – I see the impact my situation has had on my family; e.g my husband hates shopping and cooking yet now has to do all these things and is permanently frustrated by them. I want to do these and help to support my family but simply can’t. I was always the planner and organiser of our house but I’ve had to let that fall to Rich.

Our holidays, breaks, weekends and general down time has had to change to accommodate my needs, we’ve not flown to see Richard’s mum for 2 years now, it feels selfish and I feel terrible about it.

I watch my parents, in their 60s running around after me, decorating, doing heavy lifting and manual work , I should be doing this for them it feels shameful I have to sit and just watch.

Confidence, I don’t look how I want to look with no control over making that any better , I can’t always dress how I want to without help, getting around, even just walking, takes so much thought and effort it’s a binding constant , I’m aware people watch my poor walk too which makes me self conscious so I don’t walk into or around places feeling confident.

Fun, prior to the stroke I was always a bit silly. I’d run around, I’d dance, as a tactile person I’d regularly drape myself over people, hugs weren’t optional. I’d pick my tiny mother up, especially if I’d had a drink, I’d play fight with my best friends, I would regularly tickle and torment my niece and nephew while playing with them then end with big hugs

Without the physical ability to do most of these things Ifeel that I’ve lost the whimsy, humour and softer edge that I previously had.

Kindness– I think, I hope, I am still a kind person, I genuinely care about people, I will still go out of my way to do nice things but the more spontaneous and caring things are restricted by my mobility, or lack of; I can’t, for example, note Rich saying he’s tired while I’m at work and then go and grab him a coffee from the drive through as a treat. I can’t go to visit my mum and grab a bunch of flowers on the way. At work I get frustrated that my colleagues have to make me hot drinks and while they regularly do I’d like to be able to take my turn and return the favour. I worry the perception is I don’t want to play my part of the team and return niceties.

Just shine a light on me, shine a light
I’ll shine a light on you, shine a light
And you will see my shadow on every wall
And you will see my footprint on every floor~my Shadow, Keane 2008