Category Archives: Media

Script To Screen

spoonfedThere was me, thinking I wouldn’t be able to visit MS Life in London this weekend.

Well, earlier today I was in the middle of re-wiring a plug, drinking a cold soya latte and eating some onion ring crisps when I had a call.

There is to be a screening of Spoon Fed, a short film about MS, starring the wonderful Lesley Sharp (Scott & Bailey) and Joseph Mawle ( Game of Thrones and Birdsong) at MS Life on Saturday.

And me! (I’m the depressed-looking one, shuffling in to the support group and saying ‘hi’ to Joseph before taking a seat).

(That took me seven takes, honestly. This acting malarky is hard).

Would I be able to attend and take part in a question and answer panel afterwards?

Erm, if it’s a choice between plumbing in a bathroom and getting stuck in a serious amount of mud (long story) or swanning off to London, I said yes straight away. The details would sort themselves out.

To be involved in such a great project from start to finish has been brilliant; I met the actors in an intense rehearsal session where I answered every question they had about MS and how it had impacted my life.

The next day, I was at the shoot, watching Lesley Sharp capture my ‘MS walk’ so completely, I welled up. It was me on the screen.

spoon-fed-editedfilm

The production, from start to finish, has been superb. Have a little read here.

If you’re attending MS Life at the weekend, please stop by around 6.45pm on the Saturday.

We’ll be in the main theatre and it would be fantastic to see you!

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Can You Afford To Have MS?

moneyIn the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.

They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.

I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.

Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.

When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.

So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.

As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.

What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.

One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?

But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?

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Stumbling On A Film Set …

SpoonFedI had an email a couple of weeks ago – would I be interested in speaking to the actors of a new film about MS? The producer was eager to portray an accurate and honest account of the realities of life with MS.

I read further – the actors were Lesley Sharp (from Scott & Bailey, my favourite) and Joseph Mawle who had been in Game of Thrones.

Erm, yes please?

So last Tuesday I found myself in a rehearsal room in London, chatting away to them and the script writer. They asked me an incredible array of insightful questions and I think I did my best to describe life as a person with MS.

On Friday, I was invited back to watch the first day of filming. My book was to be one of the props, so I gave them a copy, where it was placed in a prominent position. My book on film – fame at last! The scene I was to watch was taking place in a support group, with a circle of chairs, Joseph already sitting down and being joined by the therapist, a lovely actor called Jonathan Nyati ( to whom I gave some handy DIY advice).

I had lunch with Joseph in a beautiful sunlit garden (OK, so there were several other people around the bench) and then it was back to work. I wandered around, fascinated to watch Lesley Sharp re-do a scene over and over, where she walked through a door and along a corridor with an unmistakable MS walk. My eyes brimmed with tears; she had nailed it.

The sheer volume of people involved in filming was eye-opening – I counted at least twenty. During takes we had to be completely silent, so of course I dropped my bag with a huge thud by accident. Not my finest moment.

Halfway through the day, I heard my name being called from the other room. The producer was asking me if I wanted to be in the film. Huh? I walked in a daze towards her and she told me I was to be an extra (Woman in the Support Group), entering the room shortly after Jonathan, where Joseph was already sitting. I would then greet them both and take a seat.

Reader. I frantically worked it out. If I said no, I would regret it for ever. If I said yes, I would regret it for a short while. I said yes. I was given a cue, sent out the room and had to count two seconds before turning the door handle and walking in. Well, I did it. About six times (I think they were desperately trying to find my best angle). Where was Spanx when I needed it?

When I had finished, and stopped trembling, I felt brilliant. I had done it. And not only that, I was part of a project which will hopefully increase awareness of MS and the effects it can have. Before we left, I had a great chat with Lesley and Joseph, both of them impressing upon me just how important they thought this project was.

I floated back to Paddington, wondering if I had made the whole thing up. I’ll even have two credits on the film – script advisor and (fat) Woman in the Support Group, aka, Stumbling In Flats playing herself. Do you think I can apply for an Equity card?

p.s. I must point out, the camera puts on three stone …

p.p.s. I must lose said three stone before the premiere …

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“Pity Is Just Another Form of Abuse”

when life hands you lemons‘Pity is just another form of abuse’ – a powerful and provocative statement. This is Michael J Fox, my childhood heartthrob, talking recently to The Guardian newspaper about some people’s reactions to his diagnosis of Parkinson’s at the age of 30.

He makes an interesting point though. I don’t want people to pity me either when they discover I have MS. Pity is disempowering and serves only to make the person feeling pity on my behalf more powerful and somehow superior to poor, suffering me. Just pat me on the head and ask my friend if I take sugar.

In fact, in common with many people who have experienced a life shattering event such as cancer, Michael J Fox believes that Parkinson’s has been ‘a gift, albeit one that keeps on taking’. MS seems to be unusual in that respect; I haven’t met many people with the condition who are willing to echo that sentiment, at least openly. Why not?

He also raises a subject I hadn’t previously given much thought to – ‘a lot of times, people who are in a health situation become the observed patient and other people project their own feelings on to them: ‘No, you’re too tired to go there,’ ‘No, you don’t want that.’  This very much adheres to an old-fashioned model of disability, where it was assumed that everyone else knew better than the person living with the condition themselves – perhaps a form of control disguised as benevolence.

He makes a further reflection which resonated deeply with me, ‘I talk about it (Parkinson’s) because it’s there, but it’s not my totality.’ I have had internal (and blog-based) debates about this – is MS taking up too much of my life? After much soul-searching, the answer I came to was a definite ‘No’. Sure, it’s there, but then so are many other facets of my life. My blog and campaigning are a slice of my life (and why deny MS? ) but I am a sum of all it’s parts.

I fell in love with Michael J Fox all over again when he says the best way to overturn pity is to find the humour in the otherwise doom-and-gloom situation. That’s exactly why my blog strapline is ‘….a funny old life with multiple sclerosis…’

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Bad Taste Or A Fitting Legacy?

clark kentI’m not known for being ultra politically-correct but seeing this advert in a couple of the weekend newspaper magazines left me feeling ever so slightly uncomfortable.

My first thought was, ‘ew, yet another company using a dead celebrity to sell something.’ Always leaves a bad taste in my mouth. Did Christopher Reeve really agree to put his name to a car from beyond the grave? And if not, who’s cashing in?

My second thought was, ‘what do I think about Audi using an actor who spent the last nine years of his life as a quadriplegic (and therefore would have been highly unlikely to drive the car) in an advert with the strap-line ‘Power from a less obvious place’?

Is this an empowering but at the same time patronising and misguided statement that yes, even disabled people can be powerful despite what society may think?

Well, apparently I’m completely wrong. When I saw my boss and brandished the advert under is nose, he said, ‘ahhhh, Christopher Reeve, the best Clark Kent ever. Wicked ad.’ Seeing my blank expression, he slowly said, ‘D’uh, Superman? You know, the office geek who changes into a superhero?’ Ah. Well, that explains it then. I’m also not known for being clued up about Batman or Spiderman either.

So the point of the Audi advert is that their new car is not on-the-surface powerful, but really it’s more powerful than it looks. Right, got it. Just like Superman.

Christopher Reeve had a riding accident in 1995, leaving him paralysed from the neck down and needing a respirator to help him breath for the rest of his life. He became very active in campaigns supporting handicapped children and paraplegics, and founded the Christopher Reeve Paralysis Foundation in 1998 to promote research into spinal cord injuries. He died of a heart attack in 2004.

I’m still divided. My boss thinks it’s a brilliant legacy to a great actor. But to me, it boils down to being an advert for a car and Audi’s primary aim is to make money; they’re not using Christopher Reeve’s image for altruistic reasons. They’re simply hitching their wagon to a greater presence.

If I had a superpower, I’d choose invisibility. That way, I could be a fly on the wall in ad agencies so I could see just how they come up with these ideas…

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