Life's Crooked Path

I started a blog. But you all know that.

Like tens of thousands of others, I decided to air my grievances in public in the hope I might right what I saw as a terrible wrong.

For 10 years I'd been extremely sick. I think 8 major operations, chemo shots and half a bowel pretty much make that point unarguable. For 10 years I hadn't worked. For 10 years I'd lived with the uncomfortable knowledge that any talents I had, any achievements I'd fought so hard for were collecting dust on a shelf.

I felt that there were terrible flaws in our health service. But the NHS had saved my life innumerable times. Like a bad, bad man you can't quite stop loving, for all it's flaws, I wanted to work within a system I believed passionately in, to make it better.

I felt that my Labour Party, a party I'd supported and believed in since I was old enough to speak had lost it's way. But that party had still achieved amazing things, for all it's flaws, and I wanted to work within a party I understood intimately to make it better.

Ambition? Hell yeah, I've got stacks of it. Ambition doesn't die with each diseased lump of rotting flesh they cut away.

Ambition for what? It's a question few seem to ask just now.

I believed without any doubt that people with "hidden disabilities" were under attack. We were the forgotten casualties of disability, the unseen statistics, the lives denied by the fortunate. I write for them. I write for me. No-one can be all things to all people. No-one should try to be.

I thought that if I could write about my illness, my life I might shine a spotlight on so many millions more, hidden from public view, stigmatised and judged and crushed. Lives that still had great value, if only anyone cared to see. Lives that were rich in human resilience and endurance. Not wasted lives, not "festering" "feckless" "lazy" lives. Hard lives. Painful lives.

But there was a job to do. I've rarely written much at all about my "personal philosophy" - that way lies madness for anyone hoping to earn credibility in an elite, male dominated world. Nonetheless, I've always believed that if you see a great injustice it is you duty, your responsibility to the world to fight it. You might be wrong - certainly many will believe that you are. But if our little lives lead us anywhere, then surely they lead us to our own personal legends?

What do we do when that moment comes? When you realise that everything that came before was simply a signpost to a moment?? How many walk away? How many decide it's too hard or too dangerous?

There are days when I think I must be stupid. When all I wanted to do was stay in bed, look after myself, try to stay alive - and I assure you, my life is mostly about staying alive, (though many will decide that something they cannot understand, have never experienced is mere hyperbole), a moment came and I found that I couldn't let it pass.

And when you suddenly know that you are on a path you must follow, it's funny how you somehow don't get lost. Maybe the air breathes for you, maybe the clouds part when you need that sunshine the most. Maybe you find a strength you never knew you had, just at the right time. Maybe the actors and actresses playing their own roles take their place on the stage by your side. Maybe someone stops you in the street and tells you something strange at just the right moment.

Maybe, just maybe a little magic happens.

If you are wrong, cruel heartless, that may still be your path. I'm not sure any of us ever really know. I'm not sure we're meant to.

But being very, very ill for a very, very long time alters your perceptions. Ambition must be muted, nurtured, modified if it is to survive. I want justice.

I want it from our politicians, I want it from our doctors, I want it from our media. 

Do I want money? Well, who doesn't, but my unusual life taught me that money is a small thing, a pleasant but illusory thing.

I'd love to have a "job", work in politics, maybe write a column, but I accepted long, long ago that that simply cannot be.

I'd love to change the world in some small way, make it a better place somehow. I'm sure we are all born hoping to leave a mark, some small dent on the world that gives this odd reality a purpose.

I hate fame. I hate it's vanity, it's greed, it's exposure. But the path insists that to do the job you must use the tools you find, unexpectedly, along the way. If you are given a chance, given a moment in time to be heard, then surely only a coward refuses to shout as loud as he can? I admit my ambition, admit my flaws, but I don't apologise for using whatever life has taught me.

You only walk the path once. When you reach the destination, all the magic drifts away. The job is done.

If the path leads you to some glory or success, only a fool believes that it is hers to claim. The glory or opportunities that come - if they come -might  make the path a little easier, clear away a few of the stones that litter the way to justice. Sometimes, the goal can only be achieved by compromise or awkward, discomforting empathy. But a fool who keeps her eyes only on the goal forgets to notice the path along the way.

We all seek approval, we all hope that there will be friends along the way who will help us to clear the path or carry on our way. But friends can turn enemy, some will speak of love and support yet manage only to destroy or undermine. It is the way of things. Learning to trust your true friends is hard. Accepting support to achieve your goals is often unpleasant, but if a "spoonie" life prepares you for anything, then it prepares you to value the constant few and accept those who drift away without judgement.

And so I will write. If I have anything interesting to say, people will read it. If not, I will still write because it's all I know how to do. All I have ever done.

I will lobby as I write, I will berate, implore and cajole. If I am asked to reach a wider audience, I will be grateful. If I can possibly find the strength to travel, or speak or debate, I will. Few will hear of the times I simply can't. I will do what I can as well as I can. No-one can do more than that.

I will win small battles. Long ago I realised that there are only small battles. There is rarely a moment of pure victory. A life spent waiting for the big win, the glorious moment of perfection might just slip away with nothing achieved. But every battle won leads me closer to a better life. A better life for me, yes! Of course! But if I'm extraordinarily lucky, if the path dictates, a better life for millions more.

I will fight my battles and leave those that I cannot change to others.

We all have a path, but we are best when we find our own way. Our energy is precious and not a drop should be wasted on throwing branches and stones in the way of another. Fight your good fight. If the moment comes, fight it hard.

That is my ambition.