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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Future-Proof?

sleepI’m one of those smug people who’s asleep the minute their head hits the pillow.

I slumber straight through to my alarm (stupid, crashing waves on a seashore), which is why I triple-check that The Teenager has his front door key handy at all times.

Not so much recently though; I’ve even surprised him by being upright on the sofa, knocking back hot chocolate and watching Sky News wide-eyed at 1.30 am as he stumbles through the door.

Whether it’s the pesky thyroid or MS, I’m not sure. All I know is that it’s annoying, frustrating and ruining my diet (I munch on toast and pick at leftovers).

Being awake in the dead of night does strange things to my brain. I’m not motivated to add 100 words to my dissertation or go through my bank statements, things that would make me feel saintly in the morning.

Instead, my brain runs riot. Darkness creeps through my thoughts. During the day, I know I’m doing well – working, studying and most importantly, bringing up The Teenager.

However, in the wee small hours, I worry about working (how long can I do this?), studying (how long can I do this?) and The Teenager (how can I help him into adulthood, am I doing enough, am I failing?).

What will happen to me when I can no longer work? With the galling statistic of 80% of people with MS giving up work within 15 years of diagnosis, the future looks bleak and I’m 4.5 years down the line.

On the upside, perhaps I could live on a barge, cultivating pots of geraniums on the deck and gliding through canal-ways? Or move to India and live on a beach, spouting profound and inspiring words of wisdom to gauche back-packers? Or flat-share with a bunch of other mature students, labelling my milk in the fridge and avoiding the gunk in the shower?

On the downside, what happens if my MS progresses?

Without a significant other to look out for me, will I wither away? Be eaten by mice?

I’m trying to be an optimist. I’ve had great treatment. I’m determined to work as long as I possibly can. But in the back of my mind, it’s always there, the thought that one day, this may all change …

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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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A Considered Response …

terrifyingI’ve been so fortunate to receive glowing reviews of my book on Amazon and Good Reads, and I treasure every single one (often reading them when I’m having a low day).

However, I had one the other day which made me stop and think.

The essence was, ‘loved the start but at the end … so much of it rambles on and is not really in the realm of most MS’ers, eg. taking on an MA’.

Do I ramble? Yes, most definitely. I even have a category on my blog labelled, ‘My Ramblings’.

It was more the second part which stuck in my head. Let me explain:

Due to MS, I have had to give up my entire career path. It just won’t happen, especially after being sacked for having MS. I was derailed. Luckily I was offered a job by my best friend, which, although fulfilling and excellent at fitting around the myriad of appointments I suddenly have, has no real career path. I will no doubt end my working days with this company.

I needed something else; something mind-expanding and difficult. As I struggled tremendously to complete my degree just when MS struck, I thought, ‘OK MS, you almost won, but get this, I’m going to try something even more challenging.’

I hit on the idea of a Creative Writing MA. Could I write anything else apart from my blog? Believe me, it’s looking like I can’t. But at least I tried.

I’m not that different from MSers who run marathons, who raise money for MS charities or hold cake bakes. Or the MSers who progress through their career path, defying their detractors. My way of pushing back the frontiers and limitations of MS is to indulge myself in something I never thought I would be able to do.

Don’t get me wrong, it’s been hell. I’ve cried, almost withdrew from my course several times, torn up endless manuscripts and sniffled in class when my short story was brutally dissected.

Perhaps an MA is ‘outside the realm of most MS’ers’. Just as jumping out a plane is for me. Or winning a gold medal in Rio.

My MA is precious to me – it shows me I still can. 

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The Sixth Form Disco …

discoThe Teenager went back to school on Tuesday, his last year at High School.

From a tiny child in a funny uniform to a very tall person armed with attitude, the school years have flown by.

I reminded him of his ‘graduation’ ceremony from nursery, aged four, complete with gown, cap and scroll. He claims not to remember and didn’t want to see the photographs. Shame really.

Anyway, we’ve bought the folders, the pens, the whiteboard, the paper.

On his first day back, I eagerly awaited an update;

‘Here, have a cookie, how’d it go?’

The Teenager rolls his eyes and swiftly examines the empty packet, plucked from the bin, and reprimands me for the amount of carbs in one single biscuit.

‘Right, have a protein shake and a banana? How’d it go?’

‘S’aright’.

‘Sounds good, yeah?’

‘S’aright, s’pose. What’s for dinner?’

‘A carb-free delight. How’d it go?’

‘Mum. It was fine. S’good.’

His thumbs flew over his phone as he was speaking to me, intermittently snorting and laughing.

‘Er? Hello?’

‘Mum. I’m all growed up. S’cool. Yeah?’

‘Ok. I’ll just have one of these cookies. Maybe two.’

The week progressed and he ran down my printer ink, depleted my finances and then let me know there was a sixth form party.

‘Right. Party. At someone’s house?’ (fingers crossed)

‘Nah. Town.’

‘Ah. Right.’

‘Mum. Muuuuuum. Everyone’s going. And that girl.’

‘Huh? What girl?’

Fast forward to the evening in question. He produced shoes from nowhere (very smart, very nice), had a haircut, used up my expensive hair serum, pre-loaded himself with fragrance and sat jiggling his feet in the living room, waiting for his lift.

‘Sixth from disco, eh?’

‘Mum. Disco? It’s in a club.’

‘Course’.

‘How’s my hair?’

‘Fab. Can I have my serum back? Ta.’

‘Erm, can we talk about girls? Like, women?’

‘Mum. I’m a cougar magnet, chill.’

I choked on my Diet Coke.

‘Huh?’

‘Joke! It’s fine. Can I have some money?’

After he left, I cast my mind back to my first ever night out in town when I was in sixth form. The ghastly little black dress, the tights, the shoes. The hair! God, the hair.

I reckon he’ll have an easier time. He’s good-looking, tall and has a fabulous mother behind him, lol. I hope he finds that girl/woman he has his eye on. And he will invite her round for coffee so I can interrogate her as to her intentions towards my son.

Joking …

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