Thursday, October 24, 2013

Yesterday was interesting. First of all I got to pick up my new wheelchair and it's a thing of beauty. Turns on nothing and really lightweight too......the colour is not what I expected but, hey, it matches my boots, and that I can live with.

The good man can pick it up one handed, before he wrestles it into the boot. AND importantly, it has very short handles, so people are deterred from just pushing you, where they think you want to go. It's comfy, has a holder for my crutches, and damn if it isn't just SOOOO EASY! 

Secondly, I saw Jeremy Paxman interview Russell Brand. I NEED Brand in my team, on my side, waving my banner or just twatting unhelpful, unkind people with a placard. People like him will always divide opinion....make up your own can watch it here....

For mobile readers click HERE.

Sadly I am now firmly in the underclass group he speaks of. And that I can live with. What I can't live with is being treated and seen as less, just because, through no fault of my own, I have this shitty disease. A disease that tries it's very best to strip you of independence, identity, value, and well, just you. 

Well, back off MS, you've had enough. Enough of me. Independence, identity and value is to keep, mine to keep, not yours.

Monday, October 14, 2013

Those of you that have read my blog for some time will no doubt have noticed that I swing back and forth like a pendulum, between people that amaze me, either with their kindness and generosity, or with their sheer foulness and meanness.

We|l, check this....

A couple of days ago, a friend of mine was on the bus, and the bus stopped to let two more passengers on. Fairly standard behaviour so far.......One of the passengers that the driver had stopped for was in a wheelchair. The driver allowed the walking person on, and then shut the doors, and when my friend challenged this, the driver said that the woman in the wheelchair can wait. Presumably for the next bus. In an hour. And presumably because the driver is a dick*.

The pendulum swings one way......

Then swings the other way......

A couple of days ago, my daughter was on the bus. Another person in a wheelchair was waiting at a stop. The driver got out and helped this person onto the bus. Helpful. Thoughtful.

These are the kind of behaviours you may experience when in a wheelchair, and you may encounter people, doctors, shop assistants that don't talk to you, and instead talk to who you're with. About you. About your wishes. Or you may find people carry on as normal. Treat you as normal. Perfect.

Sadly, not everyone is helpful, and not everywhere is welcoming. This has led to visiting the same few, very few places over and over, and these become my rat runs. Rat runs.....because I do feel as welcome as vermin. Generally, no one is busting a gut to make the world an inclusive one.

There are few places that are truly wheelchair friendly. I need wheelchair access and a disabled toilet. Not much to ask for is it? Well, yes it is, apparently. Those two things on my wish list knock out a lot of places. Oh and I need it to be accessible from a disabled parking space.

If, on a good day, I choose to go out with the good man for a coke, I have the choice of three pubs in a ten mile radius. These three pubs will become one, due to accessibility, and as I become more and more dependent on my wheelchair. I am like a Dalek from Dr Who, getting foiled by fucking steps.

The world has got small enough as it is, due to multiple sclerosis playing havoc with me, so when the world itself is unwelcoming, it's enough to make you scream. The world is designed to suit the majority, which at first glance seems reasonable enough. However, if the world was designed to suit the minority, the majority would not be ostracised.

For example, I am wanting to have a spa day with a friend. On phoning round the spas of the county, yes, the COUNTY, I quickly realised that my wish list.....y'know, disabled loo and accessible.....well, I can whistle. I did eventually find one place, in another county, and it can accommodate me no problem, and the staff were excellent, focussing on what I can do, rather that what I can't. I'll be visiting next year, and just to have the knowledge of that impending visit feels good.

I am looking forward to developing that rat run.

*Standard issue statement re The Last Leg channel 4.

Monday, October 7, 2013

When the ones I love are struggling, seeking to reassure and calm them, I'm likely to say, 'This won't last. This is just a moment. It will pass.'

Time and time again this advice has proved invaluable, to many people in many different situations. But I struggle to find something of equal worth to suit me, and what I'm facing.

'This won't last. This is just a moment. It will pass.'

The same can't be said of my situation because this will last. And it will get worse. And this is the knowledge that I carry around with me, like a heavy malignant shadow. Always there. On my heels. Never resting. From when I wake, until I sleep, and in my dreamtime....

Dreamtime. I dream that I can still walk. Walk whilst carrying my boy. Walk whilst holding the good man's hand. I dream I can still run.

The shadow is always there. A constant presence. Cold comfort.

It makes me cry. It makes me scream. It makes me hurt. It makes me not want another breath.

It makes me feel helpless.

What to do?

What to do? Keep on keeping's the ONLY thing I can do. My only option.