The Chapter I Didn’t Write
If I were writing MND: The Club You Don’t Want to Join today…
I think it would be a very different book. Not because anything I wrote a year ago was wrong. It was completely true for the version of me who wrote it. But MND doesn't stand still. And neither, apparently, do the goalposts. Except me. I definitely don't move very much anymore.
A year ago, I thought I understood what it meant to live with Motor Neurone Disease. I didn't. I understood my version of MND at that particular moment in time. Since then, the bastard has continued doing what it does best: taking things. More movement has disappeared. More independence has gone. My arms no longer work. My wheelchair has become an extension of me. I rely on other people for things I once wouldn't have given a second thought to.
I need help to move.
Help to wash.
Help to dress.
Help to go to the toilet.
Help to position my body.
Help with my PEG.
Help with my breathing equipment.
Help with things so mundane that the old me wouldn't have believed they could ever become significant.
And that's one of the strangest things about progressive disability. You don't wake up one morning and suddenly become completely dependent. You surrender your independence piece by piece.
Sometimes you grieve it.
Sometimes you adapt.
Sometimes you swear.
Usually I do all three.
The bit nobody warned me about
If I were writing the book today, I'd dedicate considerably more pages to care. Jesus Christ. I could probably write another bloody book about that alone. When you become increasingly dependent on other people, having the right care stops being a luxury or a preference. It becomes your independence. Your dignity. Your safety. Your life.
I've learnt that being assessed as "competent" on paper and being competent in someone's actual home are two very different things. I've learnt how exhausting it is having to explain your body repeatedly. How frightening it is when somebody doesn't understand something as fundamental as your breathing. How vulnerable it feels when another person's competence determines whether you are comfortable, frightened, breathless or safe. And I've learnt how infuriating it is when decisions about your life are discussed by everyone except the person actually living it.
Apparently becoming physically disabled occasionally causes people to assume your brain has packed its bags too.
Spoiler alert: Mine hasn't.
If anything, I'm probably paying more attention than you are.
Then came anxiety
This one surprised me.
Before MND, anxiety wasn't part of my world. Now it sometimes arrives before I do. When you've experienced breathlessness, panic and situations where you've felt completely out of control, your brain remembers. Bedtime can become frightening. A change of carer can become frightening. Something going wrong with NIV can become frightening. And anxiety has an especially cruel sense of humour when you have a disease affecting your breathing. You feel anxious because you can't breathe. Then you can't breathe because you're anxious.
Excellent system. No notes.
I've had to learn that surviving MND isn't purely about managing the physical deterioration. There's an enormous psychological battle happening alongside it. And sometimes that battle is every bit as exhausting.
But here's the strange bit...
While MND has continued taking things from me, I've continued living. Really living. I turned 40. There was a point when reaching 40 felt far from guaranteed. So I didn't quietly acknowledge it with a supermarket cake and an early night. I celebrated the absolute shit out of it. I had the party. I surrounded myself with people I love. I laughed. I cried. I was thoroughly spoilt. And afterwards I needed approximately seventeen business days to recover. Worth it.
I've also managed something that, for a while, felt almost impossible. I left the house again. That sounds ridiculously ordinary. For me, it wasn't. Illness, disability and anxiety had gradually made my world smaller and smaller until home felt like the only safe place. So getting through that door wasn't simply an outing. It was me taking back a tiny piece of my life. Then I went to the cinema.
Another completely ordinary thing that suddenly felt extraordinary.
That's something MND has taught me. You stop measuring life using everybody else's ruler. A trip to the cinema can be an achievement. Sitting outside can be an adventure. Putting weight on can be something worth celebrating. A birthday can feel like winning the lottery. Ordinary becomes extraordinary when you understand that none of it is guaranteed.
And somehow, we've done some pretty incredible shit
When I was diagnosed, I could never have imagined where this strange life would take me. I've raised awareness. I've shared the ugly reality of MND. I've fundraised thousands of pounds. I've appeared on television. I've ticked things off a bucket list I never expected to have. I've spoken openly about PEGs, NIV, disability, anxiety, carers, losing independence and the frankly ridiculous situations that come with all of the above. I've discovered that vulnerability and strength aren't opposites.
And I've discovered that sometimes telling people the uncomfortable truth is far more useful than pretending everything is inspirational. Because I don't want people looking at my life and thinking: "Wow. MND is terrible, but look how positive he is." Fuck that. MND is terrible.
There are days when I'm positive.
There are days when I'm angry.
There are days when I'm frightened.
There are days when I laugh until I cry.
And there are days when I simply want the world to piss off.
All of those versions of me are allowed to exist.
The most important chapter
But if I were rewriting the book today, I think I'd understand something I didn't fully appreciate twelve months ago. I wasn't only writing a book. I was leaving something behind. My son will someday be able to read those pages and meet a version of his dad that existed at that moment in time. He'll hear my humour. My sarcasm. My frustration. My opinions. Probably far too much swearing. And he'll know what I was thinking when perhaps I can no longer tell him myself. That's why I've become increasingly obsessed with leaving pieces of myself everywhere.
Photographs.
Videos.
Stories.
My voice.
And this book.
Not because I'm planning on disappearing tomorrow. Quite the opposite.
I'm still here.
I'm still making plans.
I'm still finding things to laugh about.
I'm still being a husband.
I'm still being Dad.
I'm still being me.
But MND teaches you something most people spend their lives trying not to think about: time matters. So you say the thing. You take the photograph. You write the story. You make the memory. You leave evidence that you were here.
One year later
If I could speak to the version of me who nervously pressed Publish one year ago, I'd tell him:
You have absolutely no idea what's coming. Some of it is going to be shit. Actually, quite a lot of it. You're going to lose things you cannot yet imagine losing. You're going to discover levels of frustration you didn't know existed. You're going to become intimately acquainted with NHS bureaucracy, care agencies and medical equipment you'd previously never heard of. You're going to cry. You're going to panic. You're going to be bloody exhausted. But you're also going to live.
You're going to turn 40. You're going to make memories with James and your little boy. You're going to laugh at things that really shouldn't be funny. You're going to discover just how loved you are. You're going to keep raising awareness. You're going to keep fighting when something isn't right. You're going to keep telling your story. And one year after publishing your book, despite everything MND has taken from you, you'll still be here to write the chapter you didn't know was coming.
So perhaps MND: The Club You Don't Want to Join was never really finished.
Maybe it couldn't be.
Because I'm still writing the story.
And I'm not done yet.
— Sam
September 2026
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