Stroke and mirrors

I have never wanted to visit a festival; I won’t camp, I like hotels, nice beds, bathrooms, nice bars / lounges. While I can fully imagine and appreciate the atmosphere of watching a band with a huge amount of people must be electric, I’m happier on my sofa with a beer. Choosing who to watch and when, being able to nip to the clean loo when I want and afterwards get in my large bed with super comfortable mattress, expensive clean bedding and sleep soundly.

For as long as I can remember, we have always made a bit of a point of watching Glastonbury together (me and rich).

2023 was a different year, I was in hospital 3, just about standing with lots of help but not walking by any means.

We spent 2 nights with me laid in bed pretty much immobile, Rich sat in an armchair next to my bed, with my iPad propped up on the bed table, watching Glastonbury together. I remember crying because all I wanted was to be at home on the sofa instead and it felt a world away and would never happen again

Come 2024 and I’m home, walking miles, working and doing lots of pretty regular things. Saturday of Glastonbury I spent the day with my parents at a music festival (the irony was not lost on me) but just a day festival with bands on a field. My dad’s band were one of the acts and the weather ok so me and mum went along to watch. I’d sat on a picnic blanket, had a couple of pints, avoided the toilets and saw a couple of bands, we then left. I came home, me and Rich sat on the sofa together with beer, the dog and watched a couple of Glastonbury bands. I did have a stray little tear on life feeling good.

The below photo came up on my phone yesterday (22nd June) as a ‘one year ago today’ photo; I’ve talked about this iPhone feature before (link here please) and my love/hate with it.

This specific photo has some memories attached to it, I posted it on my instagram but wanted to expand a little more and I have the blog so here we go:

This photo was taken 6 weeks after my stroke, I’d already been through high level care, one stroke unit and recently transferred to hospital 3 the one closest to home and my family. I was unable to walk, standing was just about happening, so I was reliant on being pushed in a wheelchair, my parents would take me to the hospital entrance for drinks in the coffee shop, and for me to watch the characters, it was always entertaining.

This lift ride was the first time I’d seen a mirror since the stroke and really sat and looked at myself. All I could think was how tired, pale and ill I looked. I’d gone into the stroke the physically fittest I’d ever been, heavy, with a lot of muscle and some fat, I’d put a lot of weight on the start of the year, mostly from the gym. I had a good barber so my hair looked nice, I would do the odd sunbed session too, I had, admittedly, got a bit vain.

I remember looking at myself in the mirror and initially not recognising who was looking back at me. “Who is he?!” I tried smiling, making faces and pulling my cheek around to make me look more normal but it didn’t work, I had already started to accept I’d lost a lot of my life but to not even look like me was disturbing. I remember holding my breath while the lift moved and when I was wheeled out did the biggest breath intake followed by a sob; I was crushed; it’s a good job I couldn’t walk or run because I think I’d have been found laid on the road near the hospital.

My physio and OT team had started giving me facial exercises and quite quickly my face began to recover and look much more like me.

So a year down the line, it’s worth recognising I now look much better, my facial muscles returned fully and I have zero droop. My hair normally looks good, I can’t tan anymore and while I’m still lacking the muscle bulk I had, I’ve put weight back on and look healthy which is pretty much all I can ask for. Plus it inspires content like this win/win.

One of the posts on here that continually gets views and responses is my dark thoughts (link) post.

I’ve also had 2 individuals reach out and say they were having their down days or periods and asked what do I do when I need to combat those feelings.

I signposted those people to appropriate services for them such as

Samaritans

Same you

Link

Link

And it spurred me to think what do I actually do when I’m abit low?

My darker days tend to go hand in hand with when I’m tired. So my first thing is to mentally say “ok I’m struggling and feeling flat ” letting myself recognise it.

I then try to plan my next few days and focus on a particular day (say a Saturday or day off) especially if I know I won’t be working or at a rehab appointment. I don’t agree to any big plans; for this example let’s say it’s a Saturday

Friday evening I’ll leave work and make a clear mental point while driving home to say that’s done for now and box it off. As a couple me and Rich have wine and tv time on a Friday to wind the week down; we always have, nb: only drink alcohol if you can.

I’ll go to bed, intentionally not set an alarm and just accept I might not see the AM hours on Saturday, I’m going to let my body sleep and rest until it’s done.

I’ll get up on Saturday; shower and intentionally dress myself in clothes that make me feel nice, then more often than not spend time with my parents, sister and her children; there’s nothing like an exposure to children to spread positive energy. I get spoilt by my mum with my favourite foods: fresh bread with cheese or strong cheese spread. Cake, gallons of tea.

Me and Rich might do some clothes browsing or possibly go to the pub

Once home we tend to have a laid back family meal of pizza and grazing bits together.

Come the evening I’ll catch up on tv or YouTube.

In the evening possibly/ probably more wine or beer and just chatting with Rich.

I have an incredible support network, if I put in my group chat with my best friends that I’m feeling low they will always respond and check on me.

Recently I’d been in work and a friend recognised I was struggling and having a low day , without asking he went to the shop bought me a bottle of pop, brought it to my office and hugged me from behind and said “don’t worry you’re doing amazing” the fact they had recognised it without me saying and done nice things was such a nice touch.

I’ll tell my husband if I’m struggling too. We can talk it through. He’ll remind me of the progress I’ve made, talk about how I never expected to make much progress and point out upcoming plans to be excited about.

Sometimes I’ll get some free time in an afternoon after work and use that for some self time. A cup of tea, tv, nice biscuits and I feel better for those small things

Lots of small things can be as good as one or two big ones

There’s been trials and tribulations
You know I’ve had my share
But I’ve climbed the mountain, I’ve crossed the river
And I’m almost there, I’m almost there, I’m almost there🎶almost there – Anika Noni Rose (from princess and the frog)

I’m aware that Autonomic Dysfunction is a thing post stroke where your body’s essentially automatic responses don’t work as well as they should because the nerve pathways are damaged; mine display as:

– runny nose, I don’t go far without a tissue or many minutes without needing one. This is apparently very common. Its very annoying too.

– temperature regulation, I’ve always been on the warm side and happy knocking about in shorts and a tee shirt all year round. I now find if I wear layers I get too warm very quickly and layers aren’t easy for me to remove either so I just get hot, bothered and frustrated.

I’ve never been a sweaty person, I could work a ten hour day, topped off with 2+ hours of gymnastics and not sweat a drop. I would always shower but I never had that sweaty smell, because of the heat regulation Autonomic Dysfunction I sometimes wake up in a morning and find I need a wash quickly to freshen up, this is all new post stroke, I really dislike it too.

Fight/ flight responses, I sometimes find just being an a certain scenario makes me very anxious and desperate to leave, it displays as a tight chest, feeling of unease and almost panic I’ll try to leave quickly, but nothing is quick is it

Dry lips; I’m not quite sure why this one is different now but my lips always feel dry, on my work desk, home desk, living room side table and car I keep lip moisturisers to try and help. Maybe I need to drink more, especially water but water bottles remain a challenge; especially in work.

I’m aware some post stroke survivors have a lot of speech impact, whether losing the physical ability to speak, the mental ability to communicate or otherwise; I have always been able to talk, however to regain power, volume and tone took input from a speech and language therapist (L – the loveliest person who at one point said we could visit a pub to test my voice in loud environments, but it just wasn’t meant to be.)

I do get the odd flash of anomic aphasia where the incorrect word appears, usually if I’m rushing to speak, busy or a little under pressure and tired or sometimes the word just isn’t there anymore.

Mostly it comes out as something silly and I laugh so here’s some great examples of when it’s popped up.

Telling my mum about an interior design show where they decorated ‘a nuns coven’ not a Covent but a witches coven; it was close, but not there, a couple of letters out, mine was funnier; depending on your religious views.

“I got up, went for a wee, it’s dark out so I’ve closed the window” I’d closed the curtains, close in location physically and in the same world of words but not what I meant.

My absolute favourite needs a little backstory:

Our (mine and Rich’s) bedroom, is actually a big room, imagine I’m in the bed, if you stood at the bottom I’d be on the right. At the foot of our bed are 2 huge built in wardrobes with rolling mirrored doors that reveal 2 big drawer units, a full height set of shelves, 3 hanging rails, these are “mine” to the opposite side of the bed are 2 doors: one to our en-suite, the other is Richard’s walk in wardrobe with 2 chest of drawers , a couple of hanging rails and shelves too, with such little upper limb movement I can’t get involved in laundry stuff.

One Saturday morning I was dosing in bed. Rich was putting clothes away for us both “Ben were both out of space, again” he told me, half asleep I opened my eyes. “Ok let’s have a clothes ceasefire and put some in a charity bag” I had meant amnesty and I’m adamant it was in the same world I just got the wrong one; weeks later neither of us has got rid of a single item.

While in a shop with my mum I saw some drinking glasses I liked the look of, see below

I’d spotted these and my brain pulled the wrong word “I like those effervescent wine glasses” the word I wanted was iridescent, I wasn’t far off and my mum knew what I meant.

My favourite example of aphasia is a work related one we use a small metal stick that hammers kidney stones on a pneumatic hand piece, the diameter of the stick is 1mm, while trying to get a replacement I was offered a 4mm alternative “wow that’s massive, we could dig up the road like a John hammer” no, Ben, you mean jack hammer. The team I was telling found it funny and understood the point I was making.

Shortly afterwards I decided I was done and needed to go home and switch my brain off for a while.

Watching Grand designs with some mega McMansion all white, lots of cars when the camera went over the top of the property “oh and look the ubiquitous hot tub” was what I wanted to say but got “oh look the uniquity hot tub” was what came out. Rich just looked at me not knowing what word I was trying to use, after some googling I found it.

Published June 2024 – I may add further anecdotes in the future.

August 24 while meeting with someone at work and talking about how I ensure the team I manage got the information I said I’ll decimate my staff when I meant I’ll disseminate to my staff. It’s close but drastically changed the tone

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)