Tag Archives: Parkinson’s

Sep 26 2016
24 Comments
The Teenager

The People You Love …

ghostsThe Teenager went to Manchester at the weekend to visit a close relative who is severely ill with Parkinson’s and now living in a nursing home.

I picked him up from the train station yesterday evening and could clearly see the slump in his shoulders, his troubled face.

On the drive home, we chatted about this and that but he was mostly occupied with his phone and glugging back the drink I had brought with me.

Until, ‘Mum? Can I ask you something?’

‘Of course!’

‘Will, um, do you think, well, you could ever get like that? You know, with MS?’

I took a deep breath. ‘I really don’t think so, sweets. Look at the treatment I’ve had! It was hard this weekend?’

‘Uh huh. It was really nice to see him, but really sad. I’m scared you’ll be like that when I’m older.’

‘C’mon kiddo, you know how tough I am. Tough as a toffee!’

‘So was he.’

‘Oh, I know sweets. A really strong person and what happened to him is just awful. But he’s been ill a really long time.’

‘I’d look after you, you know.’

‘That’s so lovely of you, thank you. But you know what the most important thing is? That you get on with your life. Everything is opening up for you. I’m doing just fine, sweets. I’m working, I’ve got Uni, everything’s great. You know I don’t need to ask you for help with anything. I like looking after you.’

‘Yeah, I know, but sometimes I wish you would ask me. I feel really helpless when you’re tired or your legs are sore. I’d like to make you a cup of coffee or a glass of squash. Or something.’

My heart broke into a thousand pieces.

‘Ok, let’s make a deal. Next time I’m really, really tired and have to go to sleep in the afternoon, you can wake me up after an hour with a cup of coffee? That would help me a lot.’

‘Deal.’

After growing up with ill parents, I’ve always been determined never to turn my son into some sort of carer. The thought horrifies me. But have I gone too far the other way? Am I somehow blocking him out?

And not only this fear, but also a dear friend of his, one of his close group of friends from school, passed away from cancer on Saturday. He was 17. The Teenager is struggling with appalling grief from both ends of the spectrum, at the beginning of life, and towards the end.

It is even more vital now, that I support him. But how best to do this when his thoughts are clouded by my MS?

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Nov 24 2014
10 Comments
Emotions

Que Sera Sera

spinsterSome people know just how to pop my little bubble of happiness.

I had finally finished watching the film ‘Love and Other Drugs’ – took me three days with all the pausing and starting as essay inspiration struck.

If you haven’t seen it, here’s a recap: handsome man falls in love with beautiful woman who has young-onset Parkinson’s.

They split up a few times but then they get back together, Parkinson’s and all. Love apparently conquers everything.

Anyway, I got talking to a close friend about the film and as I was waxing lyrical, she interrupted me and said, ‘well, yeah, it’s Hollywood. Not going to happen in real life, is it? I’m sorry to say but I think you’re going to have to get used to being single. You know, what with the (whisper) MS thing’.

Before I resorted to violence, I remembered that this was the same person who once told me you can gauge whether or not someone is single from how high the pile of books is at their bedside. The reckoning is, if you’re out gallivanting with a Significant Other, you won’t have time to read books.

I’ve just been upstairs and counted. I have eight books on my table, and a photograph of me and The Teenager circa 2009. Plus I have a large canvas of some barren, wintry trees and a lone cyclist on the wall above my bed. ‘Nuff said. Maybe she has a point?

It got me thinking. Her remarks were infuriating in two ways; first to me but also to the people who can see beyond MS and fall in love with a person for who they are, MS and all. I guess I was unlucky. The person I was with during diagnosis skedaddled for the door so speedily he couldn’t open it fast enough. It took me two months of mourning before I recycled his toothbrush into a handy wotsit for cleaning round the taps.

I remain single. To be honest, and it’s not an excuse, it’s been an enlightening way of discovering how empowering it can to be. Solitude has been a patient teacher. Yet, I appear to be ‘damaged goods’. Believe me, being over 40 (only a year, mind) and divorced with a Stroppy Teenager is a death knell in itself for finding a life-companion, even without the MS thrown in.

So, if I am alone for the rest of my life, so be it. I refuse to engage in the whole coquettish  ‘ooh, get me in a sparkly dress with a hold-everything-in contraption, and l’il ol’ me over 40!’ Just waiting, desperately, longingly,  for someone, anyone to reply, ‘you? Over 40? Well I never! Drink?’.

Nope, I’d far rather keep on wearing my jeans, schlepping to Uni and understanding, for the first time, that there is more to life than a possibly-elusive search for ‘The One’. When/if it happens,  it will  happen.

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Oct 15 2013
18 Comments
Media

“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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