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?
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.
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
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
Playing a match: we’re in pink. I’m back row 5th from the left
Here’s another “it’s been sat in drafts for months because I’m rubbish at explaining the topic”
I find it frustrating being physically slow. I want to dash, I want to run, I don’t want every step to be a mental checklist and huge effort. I want to go “ yeah I’ll nip upstairs and brush my teeth before I go out” and it not take ages. Pre stoke I would gallop upstairs on all fours like a tiger (in my head)
Mentally I also feel sluggish. The best description is my brain feels like a windows 95 pc trying to run windows XP (yes I’m old, leave my references alone). I recognise it’s trying to work but the process isn’t smooth or faultless, thankfully I don’t crash but I do often talk through what I’m doing to give me that extra time to process
E.g
I am forever making notes and to do lists to mean I can box off a task or thought rather than either: tackle it immediately or remember to come back to it later
leaving the house for work in a morning I’ll verbalise my inner monologue.
“I’ve got my phone, is my wallet still in my work bag? Have I got lunch? Is my blue badge still in the car?”
I know all these answers but talking them through keeps me focused and self assured.
Pre stroke I’d have grabbed stuff as I walked out of the house without a word or hesitation. it’s tiring to be like this which then slows my brain function down more.
It’s the mental equivalent of being in a dream, I feel distant, lost and unsure. I’m waiting to wake up.
Someone recently commented that my speech appears faster, I’m not sure it feels faster but I like that it might be a thng.
Clothes take forever, I want a quick change to be quick, not need a seat, plan and complex manoeuvre.
Pre ambleI can’t quite remember how this concept landed in my brain as a good idea to post (watch me delete it in 24 hours from embarrassment ) but here goes
Background:
Maslow’s hierarchy of needs is a conceptualisation of the needs (or goals) that motivate human behaviour, which was proposed by the American psychologist Abraham Maslow. According to Maslow’s original formulation, there are five sets of basic needs that are related to each other in a hierarchy of prepotency (or strength). Typically, the hierarchy is depicted in the form of a pyramid although Maslow himself was not responsible for the iconic diagram.[3] The pyramid begins at the bottom with physiological needs (the most prepotent of all) and culminates at the top with self-actualization needs
Let’s see how, post stroke life, I meet them:
Physiological
Breathing: yup I do that ok ✅
Food 🤷♂️ yes I eat, usually well and plenty, I’m not going to die of starvation but the impact of not being able to chose then prepare my own foods and eat with cutlery is a constant source of frustration; I get embarrassed when eating out that I can only use a fork or someone has to cut my food
Water – as above I can and do drink safely but the impact on not always being able to access drinks when and what I want is annoying.
Shelter – I have a lovely home as features in ‘my safe space’ but I struggle to clean, maintain and care for it.
Clothing – I have lots of clothes *peers in wardrobe* but I can’t dress easily (long sleeves, coats and buttons are an issue) I miss dressing in whatever I feel like not just what’s easy. Athe amount of time to change clothes or dress is frankly bloody annoying
Sleep – I do sleep, some residual neuro fatigue means I often sleep lots and frequently plan mornings to get bonus sleep in , however I often struggle to get comfortable. My pre stroke sleeping position is now impossible, frequently my affected arm will drop off the bed or end in a weird position so I wake up in pain.
Health – currently (June 25) I’m mostly stable, residual stroke hemiparesis is the biggest concern but I continue to work on it. My heart seems to have settled a bit 🤞
Employment- yes I work, it’s not the job it was because I can no longer physically fulfill it, which has removed my passion and enthusiasm, I am constantly looking for alternatives to try and reignite a spark which feels long since extinguished.
Property – as I said under shelter I have a very nice house.
Family – I am surrounded by a loving family; my relationship with my children has changed, I’m not the silly, tactile dad I was which has reflected in our changed dynamic.
Social ability – I am able to go out and see my friends and do things. I lost a big chunk of social ability when I lost my old gymnastic club. I have recently joined a new sports team and discovered a new group of friends and social life through this.
Love and belonging
Friendship – I have lots of good friends and can access them very regularly.
Intimacy- isn’t what it was pre stroke; there’s nothing sexually appealing about throwing a dead limb around or asking to wait until I can get into a comfortable position, I can’t really hug or cuddle either.
Family – see above
Sense of connection – I do feel well connected, I’ve got Rich, family, friends and the internet at my fingertips.
Self esteem
Confidence – pre stroke I was very confident, I had a great career, looked good, had interesting hobbies and great friends, losing all these things and living with a constant 90% frustration is damaging to confidence.
Achievement- see above, while I know the post stroke progress is something to be proud of I don’t always feel like it’s an achievement.
Respect of others – this is hard, some people respect the time, effort and difficulty my life now is, sadly it isn’t everyone and some people want to use it as an excuse to criticise me which is damaging to live with.
The need to be a unique individual- I certainly recognise I’m unique but is it something I “own” or am proud of? Not really. I think most people in my situation would be the same.
Self actualisation
Morality- I am a strong moraled man, I always have been. I look for good in the world, I try to be good.
Creativity- sadly I don’t have a creative cell within me and never have done.
Spontenaity- it’s difficult to be spontaneous when restricted by speed, ability and passion amongst other things.
Acceptance – remains an ongoing process, I have, with help, accepted where I am, it fires me to do other things too.
Experience purpose – I have tried to use my stroke experience to help others (e.g this blog) I mentally have a plan of more I could do but don’t currently have the resources for this.
Meaning and inner potential – I’m trying to find a post stroke new meaning, I have lots of potential and ideas but just can’t get there as yet
We’ve been brought to our knees We’ve been so ill at ease There are no guarantees But you know life goes on This too shall pass away Bring new and different days We need to change our ways And right our wrongs
I’ve just returned from a great little European roadtrip visiting theme parks with 2 good friends.
I’ve always been a theme park, rollercoaster and ride fan; in fact it’s how I ended up with my two closet friends. Our shared interest which spilled into a social life and long standing friendship.
Both the others have travelled to a lot of parks outside of the uk; often regaling stories of places they have been. Many years ago we had planned a small European road trip together so I could see a couple of these parks and spend some time together, we never quite got round to it.
After my stroke in 2023 I thought that hobby was closed off to me, would I ever walk enough to cover the terrain of theme parks, could I physically get into ride cars etc and maintain a safe position that wouldn’t upset safety conscious ride staff. Late 2023 the 3 of us did an annual trip to a uk park, using a wheelchair, but it worked. We agreed beyond that experience; once I was walking better we’d do the road trip.
Ian, possibly the most sensible of the 3 of us planned the trip.
We’d leave on a Thursday, get an overnight ferry to the Netherlands, have a day at Efteling theme park, drive on to Germany and Phantasialand where we would stay in one of their hotels for 3 nights. Which would give us 2 full days to explore their park. After our last night, we would make a return to the ferry hitting one last park in the Netherlands on the way there.
Arrive back in the Uk Tuesday morning and back home lunchtime.
It would be my first trip “solo” (I.e without Rich who was going away simultaneously to visit his mother) I’d have to navigate environments I don’t know, be mostly self sufficient. I could, of course, ask my willing friends for help but I resent feeling like a burden, on the run up I would message and say ‘it it’s a buffet you’ll have to help me carry things’ to positive responses and ‘stop worrying’
As planned I got collected on Thursday afternoon, after my hydrotherapy. I trundled out the door with an easy open back pack for day to day use. A small suitcase which i had almost packed myself.
We drove to the ferry, I’ve only ever done cruises, never a ferry, and had a mental image of a rusty ship combined with an aged bingo hall interior, I was thankfully wrong.
Friday morning we docked on the Netherlands and headed to a park that had been mentally on my radar for years: Efteling. I knew it was large, had a couple of well regarded coasters and some infamous dark rides. We entered, my panic about capability sat in the forefront of my thoughts.
After a handful of rides with zero issue, not always needing the disabled access queues either. I decided to try a rollercoaster called Baron 1898 a vertical drop coaster with some inversions (upside down bits). I got to the station, sat in an allocated seat, closed the restraint and found a way to clasp my affected hand with my good. Convinced I was going to be asked to get off.
The ride does a great pre show, steep hill, pauses above the drop then releases into a hole . As it shot out of the other side I was aware that I was laughing, not my limited and quiet usual, post stroke, laugh but a gutteral, noisy gufaw. The mix of adrenaline and joy from the ride, the release from stress about getting on the ride and pre trip concerns all hit in one moment. I felt my mouth wobble at the edges and a tear start to build “you can’t cry on a ride Ben” I scolded myself. For the first time using an emotional management technique on a good emotion.
Baron 1898 😍
Feeling confident and empowered we spent the rest of the day going on every ride without thought. The park was huge, bythe end of our day I had walked 6 miles.
After a water display show to finish the day we left the park plowing onto our next park, country and our hotel. Feeling a little guilty that one friend was stuck with all the driving as I can only drive my adapted car, we soon passed into the German border, eventually landing at Phantasialand and our hotel base. An African themed hotel to match an area within the park.
The hotel was beautiful, it looked authentic. After checking in, I let our friends unpack while I had a quiet, reflective, drink in the bar.
Great hotel
The next morning it became apparent one of my friends had been ill overnight and certainly wouldn’t want to have breakfast or do rides.
The remaining 2 of us went for breakfast then into the park, we early on ticked off an indoor coaster where the staff member noted me getting in slowly and rather than challenge me just let us go then met me at the offload with the kind offer of a hand.
I wish I could say it all went that smoothly. After a morning of no issues, after lunch I hit my first snag. After waiting for a ride, boarding and positioning as I had done for the past day and a half a staff member noted my awkward hand positioning and asked if I was able to demonstrate I could open and close my hand, annoyingly I cannot and told the person; deciding I was better being honest. at this point I was asked to leave, I was obviously upset feeling embarrassed and frustrated but I completely understood the staff members perspective. I took myself for a little walk to regulate myself, it might have included a beer in a quiet spot to wait for my friends. We did a couple of othe rides with no issues on our way back to the hotel.
That evening the 2 of us who weren’t ill had a great dinner in the hotel with an unusual meat grill, where I ate buffalo and kangaroo. After dinner, Once again joined by our 3rd, we went for a walk to the bar in the adjacent hotel which was lovely and offered great rooftop views of a thunderstorm which had rolled in.
The following day we all went back to the park again, my confidence a little shaken and electing not to try the bigger rides. We did try some we’d missed the previous day including an outstanding river rapids ride.
After another busy day we had our last night in the hotel preparing to return home the next day, pit-stropping at another theme park en route, which again turned out well and with no issues.
We returned to the ferry that afternoon for another crossing home.
Arriving back at my house the following morning, absolutely exhausted. I had a couple of days to rest and reflect on the experience: how much I had managed to do, the independence I’d demonstrated and the joy it had all brought. Let’s see where my next adventures take me. I’d had some small, fleeting frustrations which were mainly observations of “oh I can’t do that” but was able to process them in a healthy way
Huge thanks to I&J for taking me away, helping when I needed it and the laughter
Me, I and J. All clearly thrilled by some boat ride.
We were up and down and barely made it over.
But id go back and ride that rollercoaster.
It was fun when we were young and now we’re older
Those days that are the worst, they seem to glow now.
Today is a weird day; I’ve felt a bit emotionally wobbly for the past week or so. Today marks 2 years since the stroke.
I remember vividly the first few days and weeks convinced my life was over.
I’m pleased to say I was wrong.
In just the past 7 days I have:
Worked, almost clinically
Cooked a meal (with help)
Shopped
Walked miles upon miles
Walked the dog
Hoovered and mopped my house
Spent time with friends
Had some heart to heart, heavy conversations with lots of people
Trained with a sports club, in prep for an upcoming competitive match; discussing potential further plans too
Visited friends , staying over night
Played with their children, sang with them, laughed lots,
Sat in a beer garden.
Had a nice lunch with my family.
Did lots of rehab therapy all self guided.
The man 2 years ago laid sobbing in a hospital bed would never believe the same man would be able to do all this.
I’m still angry it happened. I’ve taught myself so much resilience and determination, I don’t often admit it but I’m bloody proud of myself. There’s been dark times, frustrations, falls, fails and fatigue; but somehow I’m still here, fighting and progressing.
I’ve needed an entire army of people stood with me, family, friends, work mates, therapists, understanding ears and I will never get a chance to repay all of that.
I’m going to bed tonight high in hopes and life.
They told me that I vanished They told me that I had it They told me that I’m gone I told them, “Don’t panic” When you’ve done it this long And you’ve seen magic And you know it won’t kill you Even when the whole world doubts it
Got another shot to pull off the impossible
There’s no need to cry for me I’m a fighter, fighter You can’t take my voice from me I will rise up, rise up
So what are you waiting for? I ain’t ready to die yet The pain is where faith is born Are you alive yet? Are you alive yet? Are you alive?
A selection of lyrics from: Chant ~ Macklemore and Tones and I 2024
There’s been many a deep conversations over the past 2 years and many quotes and phrases stuck with me; here’s a few of the wisest things I’ve been told and/or landed well, presented in no particular order.
Chin up, chest out, smiles on. By M one of my favourite nurses from in patient times. He had been a firefighter before a nurse and his old firefighting boss would allegedly tell the team before they went into a difficult situation: chin up, chest out, smiles on. He’d kept it as a life motto and told it to me regularly,
This isn’t the end of your story just the end of this chapter; go and Write your new ones. The same nurse as above did a very lengthy discharge document on the day I went home, we’d built an excellent rapport during my stay, we’d talked about what I anticipated my future being and what I wanted to do, it was quite an emotional conversation and he ended with that statement, a massive hug and wave as I was wheeled to an ambulance to finally return home.
Semper ad meliora; a Latin phrase meaning always onwards towards better things. I forget how I came across it, but I love it, if I could have a tattoo (thanks blood thinners) it would be that. I have a strong belief things will continue to improve.
There’s no“just” in what you do. While explaining how I’ve adapted working to a very senior colleague I explained “now I just do…” to which they said “there’s no just in what you’re doing: further elaboration meant they were saying I was still working at a high level and to not belittle my own contribution and efforts.
Not broken, just different.
While retelling a story of a recent experience I described it as “there’s many things on me broken but not that” to which they thoughtfully responded “you’re not broken you’re just different” and it made me smile, I like the wording and while I often feel broken to be told I’m not gave me a huge boost that I needed.
Look at where we started, look at where we got to Wasn’t gonna die, more life in the arsenal Got another shot to pull off the impossible
There’s no need to cry for me I’m a fighter, fighter You can’t take my voice from me I will rise up, rise up
Stroke and mirrors 