Stroke and mirrors

Recently, while busy someone close to me made an observation that stopped me for a moment.

“You work, you drive, you do hydrotherapy, you go to the gym, you do physio, you play sport. You’ve still got heart disease and you’ve had a stroke. You don’t have anything to prove.”

It wasn’t a criticism . If anything, they were looking out for me.

The thing is, I don’t think about those activities in the same way that many other people might.

Most people would look at that list and see demands on time and energy. Work takes energy. Rehabilitation takes energy. Exercise takes energy. Driving takes energy. Recovery takes energy.

They’re right.

But I don’t see those things as separate boxes. I see them as different routes towards the same destination.

Hydrotherapy isn’t something I do because I enjoy the process but I do enjoy an hour chatting in a warm pool . The gym isn’t something I do because I enjoy feeling tired and achy afterwards. Physio isn’t something I do because I was struggling to find a way to spend my evening and my money .

I do them because they all contribute to the same goal: maintaining as much function, independence and quality of life as possible.

That doesn’t mean I spend every waking moment trying to optimise myself.

In fact, one of the biggest decisions I made after the stroke was to move to a part-time work role .

Some people might see that as doing less. For me, it was about creating enough space in to do all the things that matter. Rehabilitation appointments. Exercise. Family. Recovery. Reading. The occasional afternoon where the most demanding task is deciding whether to make another cup of tea.

I learned quite quickly that work couldn’t be the only thing in my diary.

Recovery needs time.

Maintenance needs time.

Sometimes doing absolutely nothing needs time.

There are days when the best thing I can do is stop. Put my kindle in my hand. Have a bath. Go to bed early.

Rest isn’t a reward earned through productivity.

It’s part of the plan.

When I replied to the observation , I said two things:

“No-one’s going to do it for me.”

and

“It’s all my benefit.”

That probably sounds harsher than I intended, but it’s true.

Nobody can attend hydrotherapy on my behalf. Nobody can maintain my strength for me. Nobody can protect my future mobility by proxy.

Those are things that only I can influence.

A lot of this mindset comes from neuro rehabilitation itself.

One of the recurring messages throughout rehabilitation is that repetitions matter.

The brain learns through repetition.

The body adapts through repetition.

Recovery is often built on hundreds and thousands of small actions that, on their own, seem completely unremarkable.

The older I’ve got, the less concerned I’ve become about where those repetitions happen and the more concerned I’ve become that they happen at all.

Does it matter whether I achieve my daily steps at work, on a treadmill, walking around a supermarket or on a rugby pitch?

Not really.

What matters is that I did them.

Four thousand steps is four thousand steps.

The nervous system doesn’t award bonus points because the activity looked impressive. It doesn’t care whether the exercise was heroic, inspiring or social media worthy.

The repetition happened.

That’s what matters.

There’s another important point, though.

Not every worthwhile activity is measured in steps, exercise minutes or rehabilitation goals.

Recently we hosted friends for the weekend. What was intended to be a pleasant catch-up turned into a long afternoon and evening filled with food, drinks, laughter and the sort of conversations that only happen when nobody is looking at the clock.

The result was entirely predictable.

It absolutely floored me.

For the next couple of days I was tired, slower than usual and very aware that I wasn’t firing on all cylinders.

If I looked at that weekend purely through the lens of energy management, I could argue that it was a poor decision.

But I don’t see it that way.

Future Ben didn’t just spend energy that weekend.

He spent time with friends.

He laughed.

He enjoyed himself.

He made memories.

He lived his life.

That matters too.

Over time I’ve realised that rehabilitation and quality of life aren’t competing priorities. They’re intertwined.

I don’t exercise so that I can exercise more.

I exercise because it helps me do the things that make life enjoyable.

Sometimes that’s a rugby session.

Sometimes it’s travelling somewhere new.

Sometimes it’s a meal out with family.

Sometimes it’s a weekend with friends, even if I know I’ll be paying for it afterwards.

Looking purely at the energy cost, that weekend probably wasn’t sensible.

Looking at the quality of life gained, it was one of the best investments I’ve made all year.

Future Ben wasn’t thanking me for the hangover.

Future Ben was thankful for the memories.

For that reason, I’ve never really bought into grind culture.

I don’t want to outwork everybody.

I don’t want to prove people wrong.

I don’t want to collect stories about how hard I’ve pushed myself.

The objective isn’t to do more than everyone else.

The objective is to do enough that future me remains as healthy, independent and capable as possible.

I’m also very aware there are people with similar diagnoses who can do far more than I can, and people with similar diagnoses who can do far less. This isn’t a guide for anybody else. It isn’t a scorecard, a competition or a benchmark.

It’s simply how I’ve come to think about my own life.

For me, activity isn’t about proving what I can do.

It’s about giving future me the best chance possible.

Because I’ve learned that today’s choices are often tomorrow’s reality.

And more often than not, when I’m deciding whether something is worth doing, I don’t ask:

“Do I feel like it?”

I ask:

“Will future Ben be glad that I did?”

Most of the time, the answer is yes.

Because rehabilitation gave me a reason to keep moving.

But quality of life gave me somewhere worth moving towards

My quick “funny” response isn’t really about being funny.

It’s about getting there first.

Before somebody can feel awkward, before somebody can pity me, before somebody starts searching for the right words, I’ve already acknowledged the situation and moved us on.

A joke does that surprisingly effectively.

Most people assume humour is about hiding discomfort.

For me, it’s almost the opposite.

The dead arm is obvious. The slower pace is obvious. The need for occasional help is obvious.

The humour isn’t there to distract from reality. It’s there to acknowledge it quickly and stop it becoming the entire conversation.

Someone gets stuck behind me in a corridor.

“Go on ahead, you’ll be faster than I will.”

Somebody offers me something else to carry.

“My hand, singular, is full.”

I offer to help somebody with a task.

“Need a hand? Just one.”

The joke lands, people laugh, and the moment passes.

What could have become awkward instead becomes ordinary.

I think that’s what I’ve come to value most about humour. Not that it changes the situation, because it doesn’t.

It doesn’t make me walk faster.

It doesn’t give me the use of my left hand back.

It doesn’t make everyday tasks any easier.

What it does do is give me control over how the moment unfolds.

Rather than allowing disability to become the defining feature of an interaction, I get to acknowledge it, poke fun at it, and move on.

There’s a certain power in that.

Humour doesn’t give me my independence back.

It gives me something almost as valuable:

the ability to define the moment on my own terms.

My stroke happened, it’s a large part of my life but it’s not the biggest factor.

I’ve been thinking about masks.

Not the physical kind. Not the pandemic kind. metaphorical kind.

The one we carry around every day.

The version of ourselves presented to the world.

I suspect most people assume a mask exists to hide who we really are. To deceive. To keep people out.

Mine doesn’t work like that.

People often describe me as open. They’re right.

I’ll talk about my stroke if you ask.

I’ll talk all day about rugby.

I’ll talk about the AFO attached to my leg and the defibrillator attached to my left tit .

I’ll happily tell stories from my old career, stories from all stages of rehabilitation, stories from life now.

I’ve never been particularly private.

Yet despite being open, not everyone gets full access.

That sounds contradictory but I’ve said before I know I am .

People know things about me. Sometimes people know a lot of things. Yet there are people who know intimate details of my life and still don’t really know me at all.

For years I assumed those two things were the same.

Openness.

Closeness.

Visibility.

Being known.

They’re not.

The realisation took a while

If Someone asks about the AFO.

Sometimes the answer is simple and short:

“It’s a long story. I’d rather not.”

Other times the answer takes an hour.

The same question.

A completely different response.

The difference isn’t the story.

The difference is the person asking.

Trust is a strange concept. Most people assume it arrives through familiarity. Time served. Years known.

It isnt always

Some people I’ve known for many years still only know the public version of me.

Others seem to arrive with a key

They ask the right question in the right way .

Listen properly to my answer.

Ask a sensible follow-up

And before I realise what’s happened, the mask lowers slightly.

Never removed.

Just lowered metaphorically to eye level

Enough for them to glimpse something underneath.

The odd thing is that I don’t think the mask exists for the reasons people assume.

The mask developed after my stroke.

Before then I knew who I was.

.

My career made sense.

My body made sense.

My future made sense.

Then suddenly nothing made sense .

People would ask questions I couldn’t  or didnt want to answer;

What are you doing now?

How are you?

What’s next?

Who are you?

The problem was I wasn’t entirely sure.

The old answers no longer fit and the new ones hadn’t arrived yet.

At the time, the mask wasn’t about deceiving anybody.

It was protection.

A way of  finding  my safety in a world that expected certainty when I had very little of it myself.

A placeholder while I worked things out.

Years later,  parts of it remain.

Not because I’m hiding. I’m

Too vocal.

Not because I’m ashamed. I’m not.

Not because I’m pretending. I don’t need to.

It remains because I’ve learned there is a difference between being seen and being known.

Some people get stories.

Some people get facts.

Some people get humour.

Some people get the version of me that feels comfortable in a room.

A much smaller number of people get access to the things underneath.

The fears.

The uncertainty.

The parts still figuring themselves out.

The bits that don’t fit comfortably into anecdotes.

Perhaps that’s why I’ve always struggled with the idea that authenticity means complete openness.

It doesn’t .

Authenticity isn’t giving everybody unrestricted access.

It isn’t removing every barrier.

It isn’t broadcasting every thought.

Sometimes authenticity is simply being honest about where my barriers stand.

The mask still exists.

It lowers for some people.

Occasionally it slips.

Sometimes I realise I’ve revealed more than I planned.

Sometimes I pull it back into place before anyone notices.

Sometimes I don’t.

Most people will never see it.

A few people do.

An even smaller number know why it’s there.

And perhaps that’s the point.

The mask was never built to hide me from the world.

It was built to protect me while I learned how to live in the world again.

It was never hiding or pretending it was safety and survival

I have just turned forty; I don’t have all the answers. If anything, I have more questions than I did at twenty or thirty. I still wonder how different life might have been. I still have chapters that feel unfinished. I still catch myself wishing certain things had never happened.

Even this past week, our birthday travel plans fell away so we could stay home and prioritize our dog at the end of her life. But in true fashion, my family stepped in, organizing things on the fly so I could spend quality time with my friends and family—ensuring we still celebrated, surrounded by love, despite the shift.

Over the years I’ve learned that a life doesn’t have to go to plan to be a good one. The days before my fortieth birthday taught me something simple: I’d choose people over achievement, happiness over endless hardship, and truth over comfortable uncertainty. Most of all, I’d choose this life—different though it is.

Years ago, sitting in hospital, I didn’t know what the future held or even if I’d make it to 40. If I could speak to that version of myself now, I’d tell him only this: Life’s going to be different, but not bad .

Forty feels like a good age to finally believe it.

One thing recovery and rehabilitation and recovery time have taught me is that two things can be true which, by its nature, is contradictory

I appreciate and sometimes need help, but not too much help. I stubbornly fight for my independence but am acutely aware I can’t do everything

I need help getting to places while I can’t drive, but not planning my time or organising things, that feels controlling not supportive

I might ask for suggestions on things I have chosen, but that doesn’t mean change or select it without giving me freedom

I’m aware I’m a living contradiction.

Having that awareness, but an inability to change it is contradictory too.

Two things can be true; which feels infallible to write and doesn’t sit well with me but it is accurate.

Rehabilitation seems to have a fascination with milestones.

The first step. The first drive. The first day back. The first time doing something you couldn’t do before.

They’re the moments people ask about. The moments worth celebrating.

But what happens when the milestone doesn’t happen?

My arm and hand haven’t made the progress I hoped they would. There hasn’t been a breakthrough. No dramatic before-and-after photo. No moment where everything suddenly changed.

For a long time, I waited for that milestone.

Recently I’ve started wondering if perhaps the problem is the word itself.

A milestone sounds important. Obvious. Something that stands out.

But perhaps most milestones are just stones.

Unexciting. Present. Easy to overlook while you’re busy living a life.

While I was waiting for progress in my arm and hand, life kept happening.

.

Weekends happened.

Birthdays happened.

Friends and family happened.

Work happened.

Pub visits happened.

Rugby happened.

Not because I stopped wanting more recovery. Not because I’d reached acceptance. And certainly not because I wouldn’t take more function tomorrow if it were offered.

Life just carried on.

The milestone I was looking for never arrived. At least not in the way I’d imagined.

Maybe I was so focused on one stone that I missed all the others.

The ability to make plans again.

The confidence to book things in advance.

The ordinary frustrations of everyday life.

The things that have become normal enough that I barely notice them anymore.

Perhaps that’s the thing about milestones.

We imagine them as flags planted at significant moments.

In reality, they might just be stones. Quietly appearing along the path while we’re busy looking further ahead.

I’m not sure there’s a conclusion to that.

My arm and hand haven’t made progress.

I keep going anyway.

Maybe that realisation is the milestone.

Or maybe it’s just another stone.

June 2026.

3 years ago when I had my stroke I knew recovery was going to be long “it’s a never ending marathon”~J but I had no idea how relentless it becomes, the constant hope, the failures, the knock backs , the diversions, I feel like I’ve been in heavy combat for 3 years. I had always expected summer 2026 to be a big one (for some unnamed reasons).

And it appears that’s not the case.

Not for want of trying.

I still commit to a hefty amount of rehab but my left arm and hand refuse to work

I work professionally in a role I find real value and passion in. But mourn being an active clinical person

I manage a lot of my health despite additional conditions: epilepsy, hypothyroidism, photosensitive skin, it bares the old adage of ‘no one knows your body better than you’ -I sometimes need someone who is willing to listen and help me get to my goals but that often isn’t easy. Disjointed teams and workflows exist which I shouldn’t have to battle but do, sometimes I nudge things in a direction and hope.

Driving- I’ve had more time not driving than I have driven post stroke even learning with my adapted car but health issues have repeatedly blocked it. I should, in theory, be ok to drive very very soon but this depends on the DVLA sorting their side out and previous experience is they won’t do it in the time scale. I’m trapped when I’m alone, I’m at the whim and mercy of other people; while I appreciate help I long for that freedom of “yeah I’m going there in an hour I’ll hop in the car” or “I fancy a walk around somewhere I’ll go and do that”

Speaking of cars, it appears mine is doing its swan song. It’s been undrivable for 6 weeks and in the garage for repair for 3. I’m hoping it can’t be repaired because I get to order an urgent replacement 6 months earlier than I should; I’ve already selected my next car and am full of anticipation to get it ordered. Or my current one back if the dvla say I’m safe.

There’s been a thing in the background for 3 years I don’t openly discuss but has peaks and troughs of activity, one day I’ll be able to close that door but currently it’s keeping my brain occupied

At time of writing we’re experiencing a heatwave in England with temperatures over 30oC, I’m not sleeping well, my brain has turned to wool through a combination of tiredness, dehydration and medication which is impacting my mood, physical coordination and mental processing. Combine these with a restless mind trying to work on all the above things and I’m holding my hand up and saying I’m not ok at the moment.

However the weather looks to take a cooler turn tomorrow and we go away next week, for a lot of quiet and rest time which is perfectly timed by sheer fluke.

We recently had a big clear out in our house.

During which we found a pair of yellow socks.

In an acute hospital setting yellow socks are a visual identifier to staff that the person wearing them is a “falls risk” meaning they have poor mobility, balance or all of the above.

I spent 8 weeks of 2023 wearing those socks 24 hours a day. I didn’t have the physical ability to stand. 3 years on I walk, independently for miles.

So when we stumbled. (Excuse the pun) on to a remaining pair at home, I had a weird mix of emotions but the best emotion was the pure joy of being able to put that stray pair of socks in a bin.

I’ve thought long on hard on this post and it’s a essentially a collection of smaller posts I’m putting under one umbrella of times since the stroke I’ve had to make difficult decisions.

Do nothing or fight

In those very early days where I was still in shock, could barely sit up and couldn’t even believe in a life ahead I thought “I can stay in bed for the rest of my days or I can push whatever I have and see where I end up. My earliest physio team were very good at making me get up and do things. There’s been many times I’ve thought would it be easier to live life in bed, I’m also ridiculously stubborn and other peoples actions weren’t dictating my life.

Wheelchairs or walking

When I first got home the late spring of 2023 I wasnt t able to walk. I was transported around my house in a wheelchair, often by Rich, sometimes by carers who would, by accident, knock my furniture, fixtures and fittings making me frustrated . Going outside into the real world was solely limited to a wheelchair but i found people’s reactions made me deeply uncomfortable, people looked over my head to speak with whomever was with me, assuming I couldn’t speak or have cognitive function. Waiting for lifts/elevators to get up or downstairs is frustrating, even more so when people crowd into the lift and you’re eye level with everyone’s arse.

One of my occupational therapists had made a decision when I got home , without really involving me, on ordering an electric wheelchair the local supplying company made the process unpleasant and prolonged. When it did, finally, arrive I found it made me feel very vulnerable by feeling exposed. I had already become super cautious of not going far and by the time the electric wheelchair arrived I could take a few solo steps. One day I trundled down my village. Parked the chair outside a pub (it has steps to get in) stood myself up, walked into the pub to a stranger reacting as if I were Jesus “I’ve just seen you get up out if that wheelchair and walk!!” – ok 10/10 for your observation skills but kindly piss off. I had myself a soft drink and decided to head home, left the pub as a different stranger was sat in the wheelchair trying to use it (unaware I’d locked the keypad) still wobbly, quiet and not confident enough to kick off I loitered beside the wheelchair until he realised why I was there and got off. I went home, livid with the experience.

It did however give me a great big kick up the arse which I needed to get walking because I wasn’t experiencing that forever. Not long after I was walking mostly independently, not pretty or fast but thankful to be on eye level, not worried about batteries or people touching the chair.

I returned the electric wheelchair having used it a handful of times. I fully appreciate for some people it is their only choice and independence, I just couldn’t mentally make that adjustment, mainly because of other people.

Work or nothing

I remember the statistic that over 50% of stroke survivors never return to work. I quickly knew i couldn’t do my existing job the same as pre stroke nor could I afford to not work, I’d go back, try to adapt and see how it went. My passion, knowledge and enthusiasm remained.

Spoiler: I left after a year. I’ve written about changing job in posts before this one , with much more depth. Not fulfilling my old role how I wanted crushed me; but again did I spent 30 years at home with no career, individuality, purpose, income or structure. I changed job and hit a real stride professionally.

Not chasing people.

In the immediate aftermath of the stroke people were falling over themselves to visit me, especially in hospital.

It wasn’t to last, the novelty and altruism died off quickly only increased as time has gone on. I’ve had to have many chats in my head of “do I want to chase them?” “Am I the bigger person for trying to maintain contact” before settling on the mentality of: it’s a reflection of them, not me. Let them go.

We’re next in line
Let’s just take our time (let’s just take our time)
Don’t pull the trigger ’til the energy is just right
You’re fire, I don’t really wanna waste your time
Go too fast and we get too high
Your eyes really make me wanna change my mind
Go too fast and we get too high

🎵 – honesty, Nelly furtado 2024

I am mentally very much a “what’s that building?” “Where does that path go?” “I wonder what’s over there” “what’s behind that door?” type of person.

The amount of times my daily activities get derailed by side missions is very high.

Imagine having that huge amount of interest and curiosity in the world but not being physically able to complete it. The walk is too far, it might have steps without handrails, the building might be generally not accessible, it needs driving to get there . I’m a very visual person. I have a deep desire to know, see and learn the world but I’m stuck with a body that doesn’t cooperate and restrictions that come with it

No song lyrics this week, I’ve run dry