Stroke and mirrors

Pre amble– I’m writing this post from a wooden cabin deep in an English forest, I’ve got my husband, our dog and 2 very good friends for company along side a bubbly hot tub, crackling fire, mountain of food and a lot of wine. I/we needed this down time; some quiet, reflective space amongst nature and laughter. Perfect.

I’d internally committed to writing something because 2025 has felt a big year. As is traditional let’s go month by month

January

We kicked off the year being both cultural and supportive of our home town. A light projection show was set across our town centre buildings. Me, Rich and my parents had a good hour walking around, enjoying the novelty and spending money in local business’.

After a rough health episode in late 2024 I was booked to see a specialist cardiology service with a warning it might lead to discussion around heart transplant which was terrifying. Thankfully it was very much a deescalation situation and lifted a huge mental weight.

February

Recognising my community supported physio was becoming harder to access I set out to find a local private neuro physio as one was opening 20 mins away. S2 entered my rehab world, intelligent, enthusiastic and a great personality, he became my primary physio and good friend to boot.

I had a super rare night out with my dad, we have similar tastes; there was a theatre production of a dark horror play. We went early, had a couple of drinks and saw the show. It felt great to be out with my dad.

I had signed up to walk 90km over the month to raise funds for the headway Uk brain injury charity. I finished it early, walking over 90km and raising significant money.

March

Not much exciting to report. I was rapidly approaching being back in work for a year and remained as frustrated and sad as I was since day one.

April

I made contact with a disabled sports team (via lovely Jack at Sheffield Eagles foundation) and started practicing Physically Disabled Rugby League. Heading to my first practice incredibly nervous but being welcomed, surprised at how much I count do and quickly finding an interest.

May

I played a rugby tournaments as the spring had finally arrived.

A year back in work and I’d finally accepted this wasn’t working for me, it was breaking my heart to not work clinically. The focus had become what I couldn’t do, none of this helped me mentally.

June

June was great, I had lots of breaks. Me, Rich and the dog did a 4 night uk break in our favourite lodges, peaceful and relaxing. While there I’d seen a job opportunity which I followed up and made contact with a place that seemed a great fit.

I spent a week travelling European theme parks with two good friends. It was a great “solo” adventure and proved how much I can do.

July

I interviewed for the job I’d seen. Finding out on the same day I’d been successful. The promise of a fresh start, new challenge and environment gave me a huge boost.

I attended a huge social rugby event which was great fun, cementing my belief that I loved being on a team and the people.

A further post stroke health impact reared its head and remains mostly unresolved but a lingering issue, possibly for life.

August

Honestly, I can’t remember.

September

I finished my old job, it was surreal walking away from something I thought I’d do forever. But new job quickly filled my time and was such a good decision for me I never wallowed or looked back.

I attended a rugby end of season presentation night where I won player of the year, did a speech to a full venue, on the fly and was incredibly proud of myself.

Me and Rich attended a wedding which gave us chance to see family we don’t often see and celebrate.

October

I did my first new work semi social event. Mainly to show my face and integrate which worked well.

me, Rich, the dog and my parents also went away to our favourite seaside town for a long weekend. I managed to walk miles and while it was mostly ok, I did have a few mental spirals finding the business and noise a bit too much. One day I gave up and went to bed and had a cry; angry that everything felt difficult and embarrassed I couldn’t cope with a few days out.

Arthur (the orthotic) arrived in September, making a big difference to my walking which gave a physical and emotional boost.

November

Spent mostly working, rehabbing and trying to find that nice balance. I attended a multi day conference with my work, once again a “solo” trip but gave me some passion, knowledge and confidence alongside spending time with my new peers which was great.

December

Wasthe same as everyone’s, spent bouncing between Christmas based events. Finishing the year hidden in the forest all snuggly has been great though

Was 2025good?

Absolutely, I changed career (ish) to find peace and a better quality of life.

I found a sport

My bigger health issues remained stable though I did gain a new one to add.

Other things lingered in the background but slowly progressing which is reassuring.

I’d found a sport and a team.

2025 was the year I felt more ‘me’ I was passionate, relaxed, sporty, fun and loving. I have a good feeling for 2026 too.

The algorithm tells me I must post at 9pm tonight, so I’ve pulled a draft from back in the draft pile that only said: in an emergency as my starting point.

Essentially it’s me having a continuous awareness of my limited movements, speed and strength and what would happen if I needed those skills in an emergency?

What if I were in a shop and a fire broke out? How do I get out fast enough without causing a hindrance and risk to other people?

What if I saw someone needing emergency medical aid? I know my knowledge would help but I’d just be stood idly offering input not delivering any aid.

What if I were in that big shopping mall and there’s a bomb scare? Am I going to slowly shuffle my way to an exit and hope the timer is sufficiently length?

Perhaps I ponder on the darker ‘ifs’ a little too much and with any luck in these scenarios an adrenaline kick would help.

Run for cover
Run while you can, baby, don’t look back
You gotta run for cover
Don’t be afraid of the fear, that’s a played out trap, man
You know you’re not the only one
And don’t look back, just run for cover

🎵 – run for cover, the Killers, 2017

Meet Arthur

Arthur the orthotic.

Let’s rewind to winter 2023 about 6 months post stroke where I went to an orthotic appointment at my local hospital, a stiff, uncomfortable AFO (ankle foot orthotic) was shoved in my shoe and sent on my way, it was meant to improve my walking by assisting with foot position on steps; it did not. It over rotated my foot externally making me walk on the edge of my foot which was painful and ruined a pair of shoes within a day.

Within a couple of days I saw some of my regular physios who upon seeing the negative effect promptly removed it and put it in a bin, I was not sad to see it go.

Back to now times (autumn 2025) I visited a private clinic to trial an upper limb exoskeleton device to improve movement, but it was a no go (I may one day explain more). While at the clinic the physio and orthotist noted my walking with zero aids. Saying they thought it could be improved with an AFO. We tried 2 devices as an add on to the session.

I followed up a few weeks later returning to the clinic to give AFO a proper trial. I felt like Goldilocks after trying 6 different AFO devices on a walking track, up and down stairs, outside and inside : “too difficult to put on” “feels weird” “feels weak ” until we got the sweet spot of one that fits well, has a clever internal spring system and was adjusted to make it bespoke, off the shelf nhs generic one it is not.

Arthur (the orthotic) came home that day where I ended up walking 3 miles on day 1 and 4 miles on day 4. I don’t feel it makes a huge difference but I do feel a little sturdier. The hope is, in time, it will contribute to an increased speed too.

Arthur attaches to my leg and in my shoe which I like as it makes it discreet, until summer and short weather. And while he is 95% hidden under trousers the clever spring element sits to the side of my ankle and does look a bit like I’ve been tagged by the police.

I have a slight niggle in my head that it’s going backwards from using nothing to using an aid but I’m trying to mentally frame it as tidying up the walking. Let’s see how it goes.

I am trying to write this without being a narcissist.

Pre stroke I was present, loud, silly, affectionate and confident.

Post stroke I recognise I’m more introverted, often deep in thought and lack a lot of confidence and humour.

There are people: family, friends etc who can, and do, compare my two “eras” (for want of a better word).

But not everyone met the original Ben some have only met the Temu imitation version.

I can tell from my relationships with newer people who only know post stroke Ben that we get on, we have built friendships and some solid relationships but I have a constant niggle of how much better the relationship could have been if they had met the proper version.

I suppose it’s all hypothetical and irrelevant but it’s something that often sits in my thoughts.

Never look into the mirror
They always say that’s your first mistake
Don’t think you’ll disappear
When they come to steal your face

And I am the imposter
And I’ve already lost her

I keep looking for myself

🎶imposter- pearl Charles 2021

Pre stroke I was the swallow at home, if things were difficult or stressful I could gracefully swoop in, deal with it and leave, not just with my husband; the kids and my family too.

Id hear huffing, tutting and complaining, wander over “ill do that” or simply take over. Making free and easy decisions to deescalate situations and emotions. I was always emotionally aloof, unflappable and patient.

I am no longer these things because of the stroke.

I stand idly by, frozen, because I cant move quick enough to sort the issues, if I do get to the situation  the limit of what I can do with one hand and arm is minimal. I end up being a slow cumbersome obstruction just adding to that persons issue rather than relieving it.

Its incredibly frustrating, I feel like a penguin. Frozen, slow, limited mobility and with little grace.

Its quite the fall from a swallow to a penguin and one I don’t think I’ll ever easily accept and not be frustrated by.

Oh, she said we are penguins on the ice
We’re not meant to fly, but God knows we can try
And I see a hope that’s in her eyes
Oh, can you see the love in mine?

🎶 ed Sheeran, penguins 2021

I’ve written before about body image and that post stroke not having the muscle mass and appearance I did (and further being physically unable to regain the muscle ) combined with not being able to select and wear my clothing as I want. It Gives me unending stress and frustration to not look as good as I could and did.

Recently while talking with a family member who has had significant surgery we discussed body image particularly when naked.

We compared thoughts on feeling less physically attractive than we used to and a level of embarrassment around scars.

My current scar collection:

One significant chest scar on my upper left, where my internal defib was put in. The internal defib is semi visible under the skin too because I lost all the muscle there.

I have a scar across my ribs on my left where a chest drain once sat. I have multiple additional keyhole surgery scars scattered around my rib cage.

I have small scars in my groin both sides from the defib insertion where additional vascular access was required.

I have a small neck scar where a central line once sat, a small scar to my right arm where a long access line sat too.

By my count that’s 9. Plus the semi visible defib.

When I’m naked and feeling skinny due to muscle loss, I become hyper aware of the scars. My brain, unhelpfully tells me between the scars, cardiac implant and failure of body I feel like Frankensteins monster.

You got wires, going in
You got wires, coming out of your skin
There’s dry blood, on your wrist
Your dry blood on my fingertip

🎵 wires, Althete, 2005

Pre stroke I was never a big ‘bath person’ I’d have one if I was aching post gym or gymnastics but I always found showers a more effective use of my time and felt cleaner afterwards.

Until that option was taken away from me post stroke in May 23.

I remember the frustrating days of my hospital stays and missing comfort, familiarity and nice things. Showers had to be completed with 2 staff members, with huge assistance, I’d sit on a chair and people would attack me with sponges, wash and towels. Sometimes it was male nurses, support workers, other times the OTs would join in for what felt like their entertainment while I’m sat, naked, feeling like I’m in a car wash. Because of staffing demands the staff were sometimes unable to shower me.

One busy day I asked if I could have a bath instead as I thought it might be easier for the staff. Thinking, wrongly, there would be a walk in large bath. Instead I was hoisted onto a large bed sized trough, placed under the shower and had another, less comfortable, more embarrassing car wash style experience. It was horrible. The “bath” was stored opposite my hospital cubical as a reminder of how little dignity, independence and mobility I now had.

Once home the OTs spent lots of time considering hygiene options for me . Our large ground floor bathroom became somewhat adapted with a shower chair in the cubicle. We tried getting me in our bath but I just wasn’t physically ready to climb in and out safely . a bath board (a sitting shelf that spreads across the bath) was acquired but didn’t fit our oversized bath tub . We have a regular sized bath upstairs but I wasn’t , yet, capable of going upstairs.

Eventually, after building strength with some blind determination, hope and Rich watching me I did get into the big bath. It was lovely to be sat, warm and quietly. Washing was a little easier in the water too.

I started a routine of Monday night baths. I bought candles, nice bubble bath and nice body wash to make the most of my bath experiences.

It became a comfort having the bath as an option which felt a little luxury.

Until now September 25 when a late display stroke side effect has lead to me being told no baths; I’m feeling quite down about it. I now associate baths with independence, luxury, comfort, relaxing and happiness. I would utilise the time running a bath to shave, I would make phone calls and write blog posts in the bath to be productive. How long I’m going to be restricted from this tiny pleasure is anyone’s guess

I’ve previously posted about pre stroke how I was a silly boy (link) and some antics I used to get up to pre stroke.

A couple of times recently it has been commented on that it’s been nice to see me smile or laugh and those comments sat with me. Especially when underpinned by a rude one.

Perhaps I’ve been more smiley and happy because things feel a bit more optimistic at the moment. I don’t necessarily recognise I don’t smile as much as I used to.

Perhaps I am a bit more serious and subdued, but I’ve dealt with huge trauma, the life long adaption of becoming disabled, the mental impact of those and the fact my brain is always full of thoughts.

Recently (August 25) I was on the tram home from work, headphones on, having a think and imaginary sing along staring out of the window. The passenger opposite tapped me on the leg to get my attention. I lifted one ear phone off and he said “don’t look so serious son, it might never happen” in seconds I had tens of responses ready to fire at him and possibly a headbutt, instead I smiled politely. Replaced my headphone and looked away.

I don’t need your random input mr stranger and it was rude.

Save some face, you know you’ve only got one
Change your ways while you’re young
Boy, one day you’ll be a man
Oh, girl, he’ll help you understand

Smile like you mean it
Smile like you mean it

🎵 – smile like you mean it, the killers, 2004

Note: this post was modified 2 days after originally posting to tidy some grammar, clarity and add some song lyrics.

In my head I’d always had a rough plan of my how life would play out. Our children are now adults, our marriage is almost sickeningly sweet, I’ve had a very good career that I have loved, I had a couple of hobbies that I was distinctly average at, a large group of friends and always social plans afoot. I’d imagined I would be scrubbed at an operating table until I retired. Still knocking around with my mates doing silly things, travelling to nice places and exploring with my husband. Driving nice cars.

Then in barrelled 2023 and scrapped all my life plans.

A wise man told me a while ago: that strokes take a year to accept, a year to adapt and a year to progress. He’s scarily accurate.

Crystallised well into my second year I’m hitting my progression stride.

I’ve recently made an incredibly difficult decision, with lots of sleepless nights and reflection, to step away from my and career thus far. I’m not completely stopping work but moving in a different direction to a skill I’ve always had a high level of interest and passion for but taking it in to a different environment. You know sometimes you come across places, people and opportunities which just feel right in your gut ; I’ve found exactly that. I found Somewhere that instantly put me at ease and I felt like a confident, useful version of myself not an inconvenience or obstacle , I’m excited to start that next part of my career. It comes with an array of benefits and feels like the fresh start I need at this point and I am very ready to commit to it.

I’ve recently found myself a real hobby too.

In spring 2025 I got a message from someone who had done some fitness based rehab with me a while ago “hi Ben, not sure if you know but the local, professional rugby team have a few disabled teams via a charitable foundation, they are on the hunt for new players. I think you’d be perfect for it” I soon made contact with the team manager. Getting more information; the game is played slower if you can’t run (like me) there’s options on physical contact (I play no contact) I attended a few practices sessions where I was welcomed instantly. I surprised myself with my physical stamina, ability to pick up the game and how much I enjoyed the training.

I felt like I’d found a tribe, people, some with similar life experiences and disabilities but all with a shared passion for the sport. I’ve gained new friends who understand me and we can all bounce off each other, it’s a huge comfort to have.

I have never been especially sporty or on a sports team so it’s been a great learning opportunity for me, being welcomed on to the team during an evening main non disabled club match, I was called out on the pitch and presented with my own shirt and kit. Squinting into the stadium holding a “surname ” shirt next to a professional sportsman. I’m not sure what was brighter that evening, the floodlights or my smile

Competitive matches started late spring and I’ve found I have a competitive streak that I’ve never known. I enjoy the matches, I really enjoy the post match beers, food and chats with the team. It’s given me a huge rehab boost too, I’m certainly quicker at moving, I’m hopeful to one day make a run on the pitch.

I never expected rugby or a disabled sport to become such a key thing on my life but similarly to my career it’s about recognising I can’t change the stroke happening but I can change how I respond and forge new paths

Change (change, change)

Oh, nothing′s better than a change

Another place to start

I’ll never forget that I need you (need you)

Tryin′ to learn that you’re tired of me

What have you got to inspire?

Ready to go, but there’s no change

Who do you really admire?

🎵- change, yungblud 2025