show and tell

One of the most “challenging” things about getting Little Miss Domino out of the door of a morning is the fact that, just as she gets ready, she invariably says that she needs to find something for “show and tell”.

(me neither)

I don’t know if this is specifically an American thing but I’ve become aware that I’ve been doing this a bit at work - I seem to be going through a period when, even though I consider myself pretty-much out of that particular closet, more and more people have been coming up to me, doing the classic head-cock-thing and asking, “are you ok?”

I know, the bastards.

This isn't just people at work however. People who I see socially - parents of other kids in particular - have been asking the same question. Rightly or wrongly, I’ve been tending to jump straight in with:

“[gesturing to my sticks] Oh these? I just need to use them to get about. I’ve got Multiple Sclerosis so I’m disabled… No I’m OK… It is what it is….”

I don’t know if this is a good way to go about my business, but I’m not trying to get up in anyone’s grill (or anything). 

However it has to be said there is something kind-of militant about rocking the TWO STICK look. But after taking this stance for a while, it just gets a bit tiring.

One day arriving at work recently I was feeling pretty weary when I happened to walk into two circus / acrobatics performers (as you do - seriously, the things these people can do are frankly astonishing. And not a little unnatural).

Anyway, despite the fact one or both sticks are in use every day, they had obviously never clocked them in use, so they asked me “what’s happened?”

It was early in the day, they are lovely (FREAKS but lovely) and I couldn’t bear to get into it, so I ended up mumbling something so inconsequential that I have no memory of it.

So I’m now being hyper-aware of when I choose to “double-stick” - obviously I won’t let myself come a cropper physically for the sake of making anyone feel uncomfortable.

As the more obvious affects of my MS seem to be getting more and more noticeable, I might need to come up with a new answering technique which:

(a) Is honest about the situation

(b) Doesn't make the asker feel like a schmoe

what was that? aftershock

So the basic rule for survival in 2016 seems to be to have never done ANYTHING awesome EVER.

Last Thursday evening I was driving to a work thing after nipping home briefly. I turned on Front Row and realised with horror that people were talking about Prince in the past tense.

When I got to work, I was touched that everyone I spoke to expressed concern for how I was and surprise that I'd made it in!

As a 13yr old growing up in an ex-mining town in the Midlands, flamboyance was something to be avoided. The other boys in my year were all about drinking, smoking, sport, copping off with girls (or at the very least talking about it). Music didn't play a huge part in their lives but it already did for me, which even gave me an 'in' to talking to the quieter more studious girls (nothing ever happened, but still).

There was always something otherworldly about him, aside from his in-your-face “sexualness”. So when I first listened to him it was always in secret. The first album I got was Parade and I was mortified to see that he was showing a fair amount of flesh on the cover. He was incredibly private, obviously shy, androgynous, yet seemingly sexually voracious. It was a weird mix.

I've realised over the past week that, between them, Prince and Morrissey were, for me, kind of the twin guiding lights, showing me that there was a different way to act as a man - similar to the way that Bowie was for people in the 70s. It was ok to be different - intelligent, softly spoken, well-read, funny.

I'm not going to pretend that I bought everything he did. My window for album purchases is Around the World In A Day to The Black Album, but God knows whatever he did and the way he did it was always interesting.

The only time I saw him live was when he did around thirty nights at the O2 in 2007. When he popped up out of the middle of the stage and said, "Dearly beloved..." I'm not ashamed to say that I squealed.

It was pretty much a perfect Prince gig - a fair smattering of the hits and a substantial bit of aimless funk jamming. It's like if you went to see Bob Dylan and he didn't mangle his classics beyond recognition you'd feel shortchanged! But the epic version of Purple Rain (what else?) will live long in my memory.

In the week since his death, there have been a lot of heartfelt remembrances. But I was also incensed by this story on the BBC News site - Five strange stories about mysterious US musician. This was the DAY AFTER his death.

Like Bowie before him, Prince was an artist who liked to keep some things private but who knew how to add to his mystique by sharing tantalising titbits with the press. Were any of them true? I could genuinely give a shit. I like my celebrities to be mysterious, untouchable and little bit eccentric and OTHER.


[POP QUIZ: as an aside, can anyone think of a difference between Prince and Bowie which might mean that the way they're talked about in memoriam is in itself somewhat different? anyone? hmmm...]

The worlds of celebrity and music are getting duller by the second!

RIP PRN

one step forward, two steps back

So the Swimming Pool that I've been going to has closed down!

We'd got a plan in place and everything - I was going to drop the two female Dominoes off at Kiddy Ballet [CULTURAL ELITE], head round the block to the pool, do a few lengths, and get back to ballet in time to pick them up. But no.

This means that there is now no Swimming Pool open in Derby City Centre.

Working in the Arts [see CE], I know all too well that there's NO MONEY IN THE POT. I get that.

But be honest, is this really anyone's idea of a city?

Having said that, I do appreciate the irony of  closing down the Queen's Leisure Centre on Liz's 90th birthday.

The nearest good quality pool (the Queens was, to be honest, a sh*t hole but it was convenient) is in the town where I was born. Not a million miles away but not exactly handy.

Grump.

EDIT: oft of this parish and someone who I frequently add to a list of 'Friends who I am yet to meet', SwissLet is running the London Marathon again this weekend - as before, sling him a few quid if you are able as he's running in aid of the MS Trust.

dog paddle, belly flop

Kind-of prompted by the woe-is-me whinging of the last post, I've just been swimming for the first time in bloomin ages.

I know that 10 lengths is hardly swimming the channel, but it is a start. 

It was quite funny - I haven't done any swimming since we were in Italy last year so I decided to go in the slow lane with two other people. For some reason the slow lane was right next to the one for people who think they're David Wilkie or even a swimmer from this century - Rebecca Adlington, maybe.

I didn't let it get to me and did my lengths slowly - the plan is to try to get the same amount done more regularly.

Looking for something to illustrate this post I found this, being very careful to make sure that it didn't feature any disgraced former TV stars of my youth - although I'm not too sure about the old fella at 0:34.

let's count the rings around my eyes

March is the time when I have my annual work appraisal - I've mentioned it on here a couple of times before. Usually it involves an intense period of handwringing (from me) before my boss tells me that things are going well and we talk about ways we can make things better.

This year was different. It's a very difficult time in the UK for businesses of any kind but maybe even more so for charities or non-profit organisations.

The place where I work is funded jointly by Arts Council England and our local city council. We have good relationships with both of our funders (as well as a healthy entrepreneurial streak) but money is tight all over.

As such we're having to look at every aspect of our business including people's jobs. Which is fine and healthy. But...

My appraisal was really difficult. It took three separate sessions before we got it sorted and things are ok now but the process was horrible.

My boss and I have shared an office for nine years - I might even say we were friends.

But it was hard not to feel like I was under the microscope - like it or not, there is something about me which sets me apart. It might be an invisible disability but it's still there.

My boss was keen to stress the respect he has for me, as well as the value of my work. But there was a lot of talk about targets and tasks, and being under intense scrutiny just adds to my paranoia. The conversation was difficult on both sides - I felt I was being attacked, he didn't want to be misunderstood.

I get the fact that it's a difficult time for a business like ours - but the talk about job descriptions and changing roles really got the alarm bells ringing.

I fact his main concern was for the business to be able to support me in the future, whatever shape my condition takes. But it took three sessions over one month (with many Dark Nights Of The Soul in between) to get to that realisation.

He has always found it difficult to talk about my MS. But the fact is, it doesn't affect my work. If I'm having a really bad day, I won't be in the office. As I've mentioned before, I rarely have any time off with illness - I don't want people to view me as weak so I'll "bravely soldier on", or something.

Anyway, long story short - everything is ok.

But I was a bloody horrible person to be around during the process. I've been lucky that depression has only had a walk-on part in my disease but this was some dark shit. And - as usual - the people closest to me were the ones to get it in the neck.

All the CBT stuff I did back in the day, the physio - every positive step I've taken just went out the window. I'm trying to claw things back but I'm thinking I might need to have some more therapy, maybe make some changes to my diet, start doing some proper exercise, stop making so many bloody excuses all the time. It's pathetic.

I'm feeling pretty fed up with myself right now so I'm putting this out there, almost as a dare to myself. I need to sort my shit out. And soon.

eskimo, arapaho, move their body to and fro

In "little things please little minds" news, both of my new walking sticks bear the following sticker. They never fail to raise a smile:

Not only do I love the idea of the CEO of the company chuckling to himself when he thought if it (is it a tribute or a wry bit of mockery?), it also always reminds me "Mick Hucknall's Pink Pancakes". 

This is a fictional (for the moment) recurring programme from Charlie Brooker's masterful "TV Go Home": 

• Mick Hucknall's Pink Pancakes, in which Mick Hucknall of Simply Red fame presses his testicles against various transparent surfaces, including shop windows, glass coffee tables and Chinese riot shields. Briefly succeeded by Mick Hucknall's Spud Tip Challenge, in which he quite simply balanced a baby new potato on the end of his penis.

Neither big nor clever, but you have to get your laughs when you can, right? 

illness, fatigue, depression

So those are the headlines! They're particularly annoying because when I last wrote I was at a three-day residential seminar on organisational development.

Which was, despite appearances, BRILLIANT.

This is due to four facts:

• The women leading the course, and all the other attendees, were amazingly knowledgeable and inspiring.
• The food was frankly ASTOUNDING.
• Working in the cultural sector is excellent.
• I'm actually *sotto voce* pretty good at my job.

I came back feeling totally inspired and re-energised (so much so that my dad asked if I was on drugs).
So it was particularly annoying that since then we got well and truly into the intra-family lurgy relay. Which led into the next two items on that list.

To cheer myself up I read a book my brother bought for me, Do No Harm by Henry Marsh.

Henry Marsh is a neurosurgeon, and the book is a collection of various stories from his career. Some of it is fairly graphic - his day job is spent slicing the tops off of people's heads, rummaging around inside and cutting out bits which are life-threatening, hopefully but not always without doing any lasting damage.

Mr Marsh has spent much of his career at the very top of his game but there are stories of patients who have been wrecked by surgery, sometimes at his hand. Even then he writes with a real sense of wonder at the magic which is the human brain:

I look down my operating microscope, feeling my way downwards through the soft white substance of the brain, feeling for the tumour. The idea that my sucker is moving through thought itself, through emotion and reason, that memories, dreams and reflections should consist of jelly, is simply too strange to understand.

I've always been the sort of person who can watch operation footage of pretty much any kind (I really can't stomach anything to do with the eyes, however) so the more graphic aspects didn't bother me.

It's a great book (although on a couple of occasions, he and his fellow doctors refer to MS in a way which made it sound like they thought it was a fate worse than a brain tumour, which was surprising to me. I know it's not a walk in the park but, y'know, I'm trying to keep my morale up over here).

Anyway, long story short - it made me realise that I've never seen the images from either of my two MRIs. Part of me REALLY wants to see them, although I hope it wouldn't kick in my latent hypochondria and make even more symptoms rise up.

So my question to you - have you seen your scans? How did it make you feel? Would you recommend it?

I don't know what I'd hope to acheive by seeing them, if anything. But knowing that somebody else has seen them is kind of weird. It's MY brain, after all.

TOP FACT I learned: the brain feels no pain. It's the engine which processes and translates feelings of pain from around the body but it actually contains no nerve endings. Which is why many brain operations can be done under a local anaesthetic.