Stroke and mirrors

Pre stroke I was known for being a talker, I remember many occasions of people asking me to pause to take a breath.

In the immediate hours post stroke I had the scary experience of not being able to communicate at all.

While in my first stay on ICU I was assessed by a speech and language therapist; mainly to see if I could safely return to solid foods, which took a couple of days.

I was apparently very quiet but I know I was struggling to talk. The SALT set me going with vocal and breathing exercises to get my diaphragm and vocal cords working again, they too came back fairly quickly. I was able to talk especially to people who had tuned into me.

After 6 months someone pointed out that I was monotone in my speech and often running out of breath, I had a referral to another SALT who turned out to be absolutely brilliant.

We met during a physio session, so while doing intense physical work I was also making silly noises and trying to shout which felt silly; after this we did 1:1 sessions. I had daily “homework” making noises and varying volume changes. I would sit and do these, regularly scaring our poor dog.

There was a huge upturn almost immediately. I started to find the breathing aspect much easier.

I was discharged from the service pretty quickly, both of us satisfied my speech was better and that tone might come later on after continued usage.

It was noted by a handful of people that my patience to wait to speak had changed and I would often interrupt a conversation which upset me; I hate to think I’ve been rude or that I had changed into a worse person.

I don’t find speaking as fluent and easy as it was pre stroke. I often have to give serious consideration on what I want to say, i dislike the phrase ‘brain fog’ but it’s actually an appropriate description for how I feel.

Combine the brain fog, attention to breath control, observing to make sure it’s an ok time to speak and it impacts my speed at being able to respond so conversations feel more stunted, I don’t have the same quick witted repertoire with natural back and forths.

It’s hard to explain this to people, especially because I expect from an outside perspective I don’t appear to have much issue.

People will regularly interrupt me, talk over and sometimes ignore me unaware how much effort it actually takes for me to speak and don’t understand why it upsets me when they do those things.

I’ve started to find I can “shout” and it feel quite natural. Tone remains pretty much the same; my laugh is non existent, being a surprise when it does happen.

This is surely not what you thought it would be
I lose myself in a daydream
Where I stand and say

Don’t say yes, run away now
I’ll meet you when you’re out of the church at the back door
Don’t wait, or say a single vow
You need to hear me out
And they said, “Speak now”

🎵 – speak now, Taylor swift 2010

Pre amble: it’s took a while to think how to phrase this post; At times writing it felt (and likely reads) like I’m writing about a friend who has passed away; which I suppose is a good analogy and surprisingly accurate. I’m writing about a man who suddenly ceased to exist, I remember him with a pang of grief and Sadness; possibly with Rose tinted glasses and a nostalgia that I’m aware might be misplaced.

I was confident, loud, light and bright. When I entered a room you’d know. I’d say hello, I’d hug, I’d move around at speed. I’d bounce around doing lots of things at once. I’d talk at a million miles an hour and full of questions.

I’ve asked friends for examples of my character pre stroke to share.

Me, my 2 best friends in a hotel room for a night after a few beers but a strict (Covid) policy of remaining in room and silence by 10pm. We fell into the room at 9;59 and I wanted a cup of tea. The tray on the table was devoid of tea bags. Unable to leave the room and go to reception I tried to phone reception, however the room phone was broken. We ended with me, in just my underwear, hanging out of a hotel room window trying, in vain, to shout to reception that I wanted tea bags. this, to me, was peak “old Ben” silly, in fits of laughter and fun to be around.

Once sat in a pub I could hear a person around the corner laughing loudly with a laugh that sounded like a bird squawk, so I started squawking back and the pub started to sound like an aviary only making the original person laugh more; me and my friend in tears with laughter, making bird noises, relaxed, silly, loud, content.

Queuing to get into a night club in the cold, chatting with a female security person on the door, complaining I was cold and trying to flirt my way inside. I ended up wrapped in the coat of the security person having a hug; flirty, chatty, relaxed and confident

Coming across a series of posters from a David Williams book about a boy called Ben who liked dancing

Those wasted nights are not wasted
I remember every one
I know I used to be crazy
That’s ’cause I used to be young

You tell me time has done changed me
That’s fine, I’ve had a good run
I know I used to be crazy
That’s ’cause I used to be young

🎵used to be young – Mikey Cyrus, 2033

I recognise some stroke survivors see their stroke as an almost re-birth and “new me” event; I’m pleased for them and that they have that peace.

I couldn’t be further from that opinion , mine feels like a kidnap or murder. The real me was disposed of, an imposter stole my body pushing the real me into a dark corner of my head to watch the world play out, but I’m still here; observing. The imposter has stolen my body.he’s let my hard work; my career, my hobbies and physicality dissolve into nothingness, he’s reduced my humour, kindness and joy. He’s stripped away my confidence. Occasionally I get a bit of headway and can get in control long enough to display that some of those qualities do still exist from where I’m sat in my husk of an unfamiliar body, looking out miles away from the eyes, looking out longingly at a life lost but the imposter always wins. I feel like when Spider-Man has venom trying to control his body.

The constant wants and desires I have are closed down by the imposter; I’ve learnt to live with a lot of his control but the lack of freedom and independence is crushing on a daily basis.

Late March 2025 (20 months post stroke) we spent the weekend with some good friends, eating and drinking too much. Late in the evening I was having a bit of a heart to heart with one of the friends who had seen me at rock bottom in November 24; he commented that during the day we’d had, I had been animated, vocal and my infamous cheeky grin had broken through a few times. It was the phrasing of the old me breaking through that sat in my head to write this, thanks RSG x

I tried carrying the weight of the world
But I only have two hands
Hope I get the chance to travel the world
But I don’t have any plans
Wish that I could stay forever this young
Not afraid to close my eyes
Life’s a game made for everyone
And love is a prize

So wake me up when it’s all over
When I’m wiser and I’m older
All this time I was finding myself, and I
Didn’t know I was lost

-🎵wake me up, avicii, 2013

Note: this was edited about 6 hours after publishing to create some points of clarity, add a song quote and remove some identifiers

I have played this day over and over in my head for 18 months wishing that one time it would play out differently or that I could change the outcome. ; I’m told this a common trauma /ptsd behaviour. I can’t change what happened but accepting it has happened is good foundation ; so I’m starting by writing it out.

The 11th of May 2023. I woke up, in a bed that wasn’t mine in a room that wasn’t mine which had a lot of background noise, I was in a hospital where I’d spent the night to prepare for my long anticipated cardiac surgery “it’s today, you’ve committed and you’re doing this” my inner monologue said.

I had 2 bottles of a pre operative drink to get through; I’d had 2 the night before and they tasted horrible. I forced them down with my stomach feeling like a rock

A pleasant support worker cameober to say good morning and we had a funny chat about pubic hair that she wanted to shave, mine, not hers, for surgical infection reasons . I wasn’t especially invested in this conversation so made an excuse and went to the bathroom.

I had an absolutely horrendous toilet experience; me and my stomach don’t cope well with stress and I’m sure the pre op drink was evil . I showered and while I was drying off could hear conversation about me on the other side of the bathroom door. I put my surgical gown on, opened the door and 2 theatre staff were stood like security waiting to escort me to theatre. We walked down to their recovery area where I was seated for a short time before going to the anaesthetic room.

I climbed myself onto the operating table. The anaesthetist who I’d met the night before told me he’d been thinking overnight and had a slight change of plan to what we’d previously discussed: mainly he wanted to place a central line (a big drip that goes through your neck to your heart through the vena cava, big artery) it allows anaesthetic drugs and fluids to be given quickly, it offers additional monitoring and is highly useful in high level care afterwards such as ICU.

I knew it meant the anaesthetist was concerned “if he’s worried why are you still doing this? It’s not too late to stop, jump up and walk out ” I told myself that doing that would be very dramatic but I also knew I needed the surgery for my heart to be safer and I’d waited over a year to get to this point, “shut up and carry on you’ll soon be anaesthetised and not know”.

And true to that I didn’t know;the surgery just sort of happened.

I’ve got a blank space in my memory at this point.

My next real memory is being on a bed, not the operating trolley I’d previously been on. The back was raised up so I was half sitting, I felt like I was sliding down the bed and uncomfortable so tried to reposition myself pressing my hands into the bed to shuffle up, but nothing happened. My brain slowly decoded that my left arm hadn’t moved. Still uncomfortable I decided to try digging my heels in and pushing up, again, no movement and my left leg hadn’t moved at all. I tried moving just my leg but zero happened.

There’s more memory blank spots sparodically around this time. At some point, I think around lunch time Rich arrived and sat to my right. I remember trying to speak and there being silence out “oh shit Ben, think how you can communicate? ” I used my right hand to grab Richard’s and started scratching letters on the back of his hand hoping he’d understand what I was doing; I can’t remember at this point what I wanted to say, but I know I was absolutely terrified. I tried to move myself again and for a third time nothing happened I realised I could raise my left leg a little if I really tried. I wanted someone to look at my leg and arm to work out what was wrong so started thrashing as much as I could with the thought process of “they’ll see it moving and know it’s not right” but that didn’t happen, instead a while later Rich flagged it and was told it was me in pain so they would get some painkiller. “I’m not in pain you idiots” I screamed internally, paralysed in bed I watched as a nurse drew up a strong opiod painkiller to my left.

Time went on, I’ve got more black spots.

I started piecing things together

“You aren’t in pain no matter what they say, your right side is active just your left isn’t and you can’t speak.

Oh shit, shit, shit this is a textbook neurological event. You need help. How do I tell someone if I can’t speak?”

More black spots.

At some point a doctor appeared and stood at the foot of my bed

“Ben we think you’ve had a neurological event and want to scan you and maybe move you to another hospital to treat”

I was aware it had gotten dark out and my parents were going to be out at a long anticipated event, I didn’t want them disturbing. I’d been adamant they should go when they’d considered cancelling.

“No shit I’ve had a Neuro event , crack on then” i willed I grabbed Richard’s hand scratching the letters C and T because I once had a meltdown in an mri and vowed to never do another, I was panicked thinking I was already limited in movement, unable to communicate and possibly about to be put in a position that made me uncomfortable. Rich confirmed it was a CT and to breathe through it.

“You might never move again, you might never speak, work or do anything” my thoughts raced. I mouthed the word Sorry to Rich as I was wheeled away for the scan thinking our lives were over.

I don’t remember much more, some conversations around it being a stroke but I couldn’t be treated at the very nearby neurosurgery centre . I felt myself crumbling and getting angry. If only I could talk and try to help; I could phone my contacts in the neurosurgery centre and plead my case; I could say I’d been aware of the event for a while

The blank tape continues.

I know my parents came at some point in the evening But it’s all jumbled from here. the following days of intensive care just happened around me; I’ve been told the blank spots and blurred days are essentially where my brain went “oh no this is horrible I won’t ever want to remember this” so it stops recording. This was an analogy from my first psychologist that I really liked and has stuck with me

When the silence isn’t quiet
And it feels like it’s getting hard to breathe
And I know you feel like dying
But I promise we’ll take the world to its feet
And move mountains
Bring it to its feet
And move mountains

🎵 Rise Up – Andrea Day 2015

It’s one of life’s “things” that I find a bit frustrating. I’m well known, professionally and locally. I’m currently trying to pick up new hobbies and getting out doing more experiences.

I am constantly faced with the same questions:

• What happened to you?
• What have you done to your arm? people assume I have an arm injury
• What’s your history?

I am, pretty much, very open; I’d be a hypocrite if I wasn’t considering, well, this *gestures at blog*

So I don’t mind answering but it nearly always leads into more questions or a bigger conversation which I don’t enjoy and find tiresome.

Yes I am young to have had a stroke, yes it did happen in my 30s.

Yes I do look “ well” because I’ve worked hard.

No it didn’t just happen; it was during surgery

Yes that is rubbish

Maybe there was something that could have been done but I don’t really know.

Yes it was very scary; it still scares me now.

Yes there is a legal case ongoing, no I absolutely don’t want to talk about it.

Yes I do work and drive with an adapted car.

I got back to work Just under a year but I gave up a lot of the role.

Thanks for your interest and concern.

Tough like the scuff on a pair of old leather boots
Like the blue-collar, red-dirt attitude (yeah, yeah)
Like a .38 made out of brass
Tough like the stuff in my grandpa’s glass (grandpa’s glass)
Life’s gonna do what it does (ooh)
Sure as the good Lord’s up above
I’m cut like a diamond shinin’ in the rough (shine, shine)
Tough

🎶- tough, Lana del Rey and Quavo 2024

Ironically I’m writing this from my bed.

Prior to my stroke I was always ‘known’ for sleeping: the ability to drop off pretty much anywhere. Any time, on a weekend I’d rarely see an AM hour. With hindsight this was likely the impact of being in AF for the entirety of my life.

Post stroke the immediate after period was full of atypical stroke fatigue. I’d barely make 4 hours without a nap. I once fell asleep during a physio session. On my return home I needed so much sleep to just function combined with some emotional trauma getting out of bed was, some days, impossible.

Once I got back to work and in a routine getting up became easier.

18 months on and I still require more sleep; my brain is still trying to learn how to be functional in life and repair the damaged areas. But I’m pretty good at planning my days off and weekends to get those morning time extra sleeping times in.

Frustratingly one of the most difficult parts of sleep is getting comfortable. Pre stroke I slept on my belly, left arm under my pillow and head with my right tucked in the quilt. That’s not an option any more. I end up sleeping on my back and quite often my left arm falls off the bed so I wake up with a sore, stretched shoulder. Or I sleep on my left side precariously holding my left arm to my chest with my right which isn’t verycomfortable

.

Occasionally I might nod off on the sofa, laid on my right hand side which is fine until the dead weight of my left drops somewhere (normally wrist downwards into the sofa) and I wake up in pain that it’s been in an awkward position.

I miss comfortable sleeping and not worrying that every time I sleep I’m going to wake up exhausted ir in some degree of discomfort

I’m aware my most recent posts have been a bit doom, gloom and dark and it’s time I posted a positive one so here we are:

In December 2024 while mindlessly doom scrolling I saw a post from headway UK (a brain injury charity; I have used some of their online resources before but that’s hopefully a long story for further down the line) and I know they run groups, activities etc etc for all brain injury survivors not just stroke.

They posted about an upcoming fundraising drive to get people to walk 90km in February 2025 fundraising for them

I continued doom scrolling but the thought kept coming back to me over the next week “it’s time you gave something back Ben” and you can walk; sure it’s not pretty or fast but you do walk.

A bit of fast maths told me 90/28 was about 3km per day, I looked on my apple health and was routinely hitting or well over.

I talked it through with Rich he agreed it was do-able maybe doing the odd longer walk supplemented with a daily 3km or there about and he’d help me.

Feb 1st I was almost bang on 3km

Feb 2nd was much lower, I had a lazy day pottering round the house and

My next day off I decided I was getting a catch up in; I set off from my house, through our adjacent woods, followed a spring /stream almost to the next village then back home. It was muddy, arduous and I began to question if I had overestimated my ability to do the challenge, what kept me going though was seeing the donations come in, I’d set a goal of £150 over the month and watching the donations come in was humbling and made me realise how supported I was.

The second week I could pull back a little; easily getting my 3km per day when in work, the Sunday of that week Rich made a suggestion: let’s walk round our village dam, with the dog and end in the pub. All these things AND km off my total. Let’s go!

Week 3 followed week 2, and week 4. Rounding off in the pub with a long walk. I was getting close.

Headway announced all completing walkers with 90km and £150 raised would get a medal and certificate. I’ve never had a medal and I want one!

In the final days I’d started getting very close; I wanted to finish the 90km on a high, plotting to make a final walk to the pub, crossing the threshold as my 90km ticked over.

Because I was high activity at workthe 90km ticked over without fanfare as I waited for a tram home, just me, a few scattered strangers and a feeling of underwhelm. Once I got on the tram,sat down, confirmed my numbers were correct and I’d completed the challenge it started to sink in.

My mind ran back to my days on the stroke ward convinced I’d never walk again. Those first movements of learning to stand then making some shaky, poor movements to make my first steps.

Here I was having knocked 90km in 26 days (2 days early) . I checked my fundraising amount the £150 goal long in the distance sat at £305. More than double my initial goal.

For a man who had at one point given up ever walking again I’m chalking this one episode up to my determination, ambition and passion which have always sat behind me.

I’ve done it on socials but I want to cement some thanks:

Rich for doing lots of the walks with me

Donors I appreciate every penny

Marina for joining me slowly bumbling around behind her

Oliver my good friend who joined me for one indoor walk and lunch

Let’s be clear.

I do not mean the Disney ride with terrible but infectious soundtrack.

Nor do I mean the “it’s a small world” phrase when you bump into someone you know when on holiday etc.

I’m talking about the world being pulled inwards which is what happened because of my stroke.

I darent travel far (flying, in particular airports terrify me now: so big, time restrictions and busy, I dare say security would be a nightmare too ) so in that sense the physical world has become out of my reach, in the past I’ve hiked through Caribbean rain forests topped off with a swim in a natural waterfall pool. I’ve swam in naturally formed pools in Italy, I’ve explored the pompeii site with a deep interest running building to building, I’ve jogged beachside trails and hiked up volcanic landscapes chasing the kids in the canaries. Ive hiked up forests next to fjords in Norway I’ve skied in the baltics. Those things are just gone from my life now.

My hobbies and interests are pretty much non existent now. Sometimes I’ll see someone (a stranger) doing something; say running or cycling and go “yeah I’d like a go at that” before the crushing reality that simply I can’t and likely won’t ever. Just a million activities closed off. Options; fun, interests, distractions just continually finding I’m against a never ending series of closed doors.

Similarly while I’ve persevered and work continues; my passion is lacking due to not being able to complete the clinical aspect which I loved so much . I often debate a new role or career but trying to find one that fits with one functional upper limb and slow lower limb puts me off even looking.

I’ve previously discussed food and how because food prep and cooking is near on impossible and eating not much better I’ve lost choices over what I eat and when.

I can’t eat out due to being unable to use cutlery. Hand held Street foods? Nope.

Ilive a small life of working what I can, being at home, rehab physio occasionally going for a walk or to the pub but that’s about it. It’s a far cry from pre stroke days of a job I adored with a huge clinical commitment running around , doing a hobby or activity pretty much every night of the week . Going out on a weekend. Travelling when and where we wanted and doing what we pleased.

My world was pulled inwards and I can’t fight to get it back out. it’s like being stuck in a bed sheet but more oppressive and added mental turmoil.

There’s no indication of
What we were meant to be
Sucking up to strangers
Throwing wishes to the sea

It can’t come quickly enough
And now you’ve spent your life
Waiting for this moment
And when you finally saw it come
It passed you by and
Left you so defeated

🎵- it can’t come quickly enough, scissor sisters – 2003

I forget how or why but I’ve recently had to really think about my house and why it’s my safe space.

I didn’t know at the time but I lived a fairly privileged childhood in a nice 3 bedroom house overlooking fields; where I’d spend my summers playing as a child, the house was in a small community. At 16 my parents moved us into a new build house a mile up the road, it was a large 4 bed detached house overlooking woodland; I was once again very fortunate to grow up there.

Me and Richard have lived in a variety of houses both rented and owned through our years together; my sister meanwhile landed on her feet and bought a very large 4 bedrooms house overlooking fields. I always knew I wanted a house for our kids to grow into adults in and with a nice view. I’ve long had a dream of having long lazy weekends where our adult kids (and partners) drift in and out as they please, we eat, open bottles of wine and it becomes a hub not a house.

In 2019 while browsing right move (it’s a hobby) I spotted a local 4 bed detached house overlooking fields. It was within our price range. We drove by it a few times Then booked a viewing; some small concerns over the location, but the house was large, modern and seemed great. On viewing , it was indeed large and the views incredible and due to the location super quiet nestled between woods and crop land it was quiet. the decor wasn’t to our tastes and it needed some freshening up. We put an offer in, it took a whole year to organise before we moved in April 2020 3 days before the country went into covid lockdown, it gave us time to clean, paint and plan.

Pretty soon we’d refreshed the hallway ripping up a heavily used carpet and replacing it with a warm oak. It always looks super welcoming like being welcomed by a sunny smile . I’ve got attractive lighting that features in the downstairs hallway ceiling lights, over stairs chandelier feature and landing wall Lights which tie the expansive and split level space together.

The kitchen had its first ever deep clean the day we moved in. We painted it pretty fast too, into clean colours. It’s a large space split between a U shape kitchen and open dining area, over time we put a pair of comfortable seats, side table, lamp and speaker to create a snug corner. As I can’t really cook post stroke I’ll often sit in the snug corner and talk to Rich while he cooks listening to music together.

Our living room has ended up an eclectic mix of mostly mid century modern inspired furniture but in my favourite colours.

My favourite few rooms of the house:

Our guest room. A ground floor double room that didn’t really have a function until we moved in. We frequently have friends to visit and stay so we painted, put new carpet, nice bedding and curtains in. I’m glad we did as it was where I slept for a while on my return from hospital summer 2023. It kept me on the ground floor as I wasn’t yet doing stairs and it gave me easy access to another favourite room:

The ‘big’ bathroom; as our house is essentially a dorma bungalow the main family bathroom is on the ground floor. It was created to a high standard. It’s a big space with an oversized bathtub that took me a while to learn to use again. A seperate large shower. Pedestal sink, the tiling is lovely and after placing a storage unit and nice mirror because a top space in the house.

Finally my ultimate room is the master bedroom (our bedroom). Upstairs, it gives great views over the surrounding fields and towards our local town centre. It was 10 years in the making (in my head) I remembered once seeing a wallpaper I loved, I forget where, but had never had a chance to action this. Until we got to this house, I managed to find it online and get it, it’s a deep Matt black with white silver birch tree trunks heading up the wall, the remaining walls are white.

We have a thick dark carpet and heavy black curtains. The odd bit of gold decoration makes it not too monochrome , one thing I will never compromise on is nice bedding, it’s currently white, pretty plain, with a white fur throw runner.

At night time with bedside lamps on and the curtains drawn it feels super cosy and dark which is what I always wanted. I really like to feel like I’ve closed the world out

While on my many weeks in hospital I longed for that bed and room, the feeling of being enveloped, silence, comfort, Rich next to me and the dog in the room both snoring.

Even when we got home and I was downstairs all I wanted was to get back to my bed and my room. I have a strong recollection of one of my physios helping me up the stairs and into the room. I looked out of the window soaking in my view then sat on the bed with the physio, she told me the room felt like “a supervillain lair” to which I responded “who says I’m not”. Even some 18 months onwards I relish getting into bed every night, appreciating everything: . To feel comfort, safe and happy is such a big thing.

I know people are usually house proud but I think I love my house. The things it means and stands for in my head.

Oh, home, let me come home
Home is whenever I’m with you
Oh, home, let me come home
Home is wherever I’m with you

• 🎶Home, Edward Sharpe and the magnetic zeros (2010)

I’ve never been a foodie but it didn’t stop me enjoying the foods I do like; I’ve historically been an ok cook, especially if it came in a pre done packet . Pre stroke I could get my way around a kitchen and make a half decent meal

I used to cook a mean Sunday roast, I had a good handle on joints of meat: pork and beef being my favourite to cook and eat, being a true Yorkshire man I had nailed Yorkshire puddings, they weren’t the prettiest but I could do them.

Even with some adapted cooking devices recommended by my OT, cooking and preparing food isn’t quite the same post stroke, it frustrates me.

The other big thing with food: eating out, I love and always have loved eating out.

I’m now incredibly wary of it though. I can’t use a knife and fork which is plain embarrassing, I’m wary of people noticing and thinking: I’ve either got no manners or am being lazy. if someone helps me (say Rich cutting a meal up) it’s embarrassing and infantilising. Instead I scour menus for finger foods, small plates and things that won’t need cutting, which is hugely limiting. Especially when what I really want is a big old steak.

Even if I stick with hand held foods it’s still not easy; have you tried eating a burger without both hands? It’s not happening.

Chicken wings are one of my all time favourite foods, but are an absolute ordeal to try with one hand, I persevere because I want them.

I’ve grown to resent meal times as they present stress and frustration rather than relaxation and enjoyment.

I eat less than I used to and what I do eat I can’t alway enjoy; fruit is pretty much a no-go aside from prepared fruit bags. it’s sad.

I’m aware I’ve had a few deep and darker blog posts recently, I’m hoping to have a much more positive one in a few weeks.