A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Saturday 31 July 2021

Army of me

Do you sometimes look back on a period of time and wonder how you had the hours in the day and the energy to get through all the things in it?

If so, you'll understand the slightly shell shocked feeling of having got to the other side.

Even more so if you have a body that insists on fighting you every step of the way.

It's been two weeks of non-stop work, requiring long hours, lengthy meetings, last-minute requests and constant demands.

And in the middle of it all, my friend's funeral. Which was a very touching event.

It has, in short, been exhausting. And one of those times my husband thinks I have an army of myself stashed away to be able to command to deal with all the tasks.

I don't. But I'm pretty sure we all wish we did on occasion - foot soldiers to pick up the slack and captains to make the decisions.

However, all the work got done (some of it in an eye patch due to insane temperatures flaring my existing eye damage) and I'm now on leave for two weeks.

Company, stand at ease.

:: Army of me by Bjork

Footnote for this week's artist - I once won a nightclub competition at university for looking like Bjork. Anyone reading who may know me in real life can judge whether that was a fair assessment, or if the dark of the club and the drunkenness of the crowd may have played into the decision. Either way, I won a pretty dreadful bottle of fizz and then spent quite a few months of being referred to as Bjork around campus. There are far worse comparisons to be had.




Friday 16 July 2021

Sailing on the seven seas

Well, what a lovely week of weather.

Sadly, we've spent it inside working, but last night we were let loose and went out!

But not just anywhere - we went out to a FLOATING GIN PALACE!!

(Alright, our friends had hired a canal boat and were adventuring along the waterways near to where we live, but they had said booze on board, therefore the description stands.)

And it was lovely - not only to see friends in actual person - but also to be out in the glorious weather taking things very easy at a top speed of less-than-walking-pace.

And because we drove around an hour to meet them, because the weather was beautiful and because we were on the water, it felt almost like a mini holiday.

And now it's the weekend and the sun is still blazing so the paddling pool will be out.

Yes, we have bits of work to do, and yes, there's always a huge list of house jobs, but the floating gin palace vibe has set me up for the weekend and I intend to try and channel that spirit (pun intended) for the next couple of days.

:: Sailing on the seven seas by OMD







Saturday 3 July 2021

Titanium

It's Disability Pride Month this month.

I'll be honest, I wasn't aware disabled people had a month in which to be proud, and I've been one for 17 years.

Either this shows a staggering lack of awareness on my part, or a larger one in society.

I'll leave that thought hanging.

But I also discovered we disabled people have our own pride flag, and I rather like it.

It's a little bit superhero, it's a little bit 80s retro, it's very slightly Bridget Riley. And all those are good things.

The meaning behind the design, by Ann Magill, is broken down into these parts:

Black background - a colour of mourning, to represent those who have suffered from Abelist violence, also a colour of rebellion and protest.

Zigzag/lightening bolt - how disabled people must navigate barriers and the creativity in doing so.

The five colours - the variety of needs and disabilities (mental, intellectual & developmental, invisible & undiagnosed, physical and sensory.)

The parallel stripes - solidarity and difference within the disability community.

So, now I know. And I shall fly the flag (metaphorically, I suspect, not literally.)

And I shall also take a moment to recognise that we should have a month of our own. A month to recognise and celebrate what we live with - every single day.

Because disability is with us for life. And that is nothing to be ashamed of. 

The ways in which we continue to live our lives - despite the hell our bodies throw at us and the varying and vastly misunderstood restrictions we face - is absolutely something to be proud of. 


:: Titanium by David Guetta ft Sia