Category Archives: Emotions

A Shadow Of My Former Self

mirrorI had an illuminating conversation with a fellow person with MS today and it made me think.

We were talking about what our ‘other’ selves would be doing at this point, without MS in our lives.

Number one on my list is the death of courage.

I was in a beautiful hotel in mid-Wales for a meeting but getting there had been a carefully-crafted expedition. On my own. For someone who has had The Boss pick me up every day for work since January with a cup of coffee and a chocolate croissant,  this was, well, big. Huge.

I drove there for a meeting all on my own, with only my nagging sat-nav and a can of Red Bull for company. I was utterly petrified. To put this in perspective, I used to think nothing of finishing work in Austria and driving to Prague for dinner.

As I wended my way around the winding roads, I reflected upon my Other Life. I would have gone to work, no need for day off to prepare. I’d hop in the car with tousled wet hair fresh from a shower, perhaps wearing a jaunty striped t-shirt with a scarf knotted just so. I would toss a few essentials in a canvas bag and leave.

In my other life, the one that I forked away from back in 2011, I would be a fully-qualified social worker. I would be helping people. I would also have matching cushions and dinner parties with interesting people, where I would serve kitchen suppers involving pomegranate seeds and an Indonesian paste.

My shadow self stalks me. Yet, isn’t that the same for everyone, MS or not? Don’t we all wonder what we could/should/would have done; it’s merely that MS throws this in to sharp relief?

Maybe I should concentrate on that other fork in the road, the one that led me here? Ok, so I may not have matching cushions and a satisfying career, but would I have grown as a person? Probably not.

Without MS, I would not have that job where I could be here every single day that The Teenager got back from school. I would not have been witness to the tiniest moments that are the biggest in a Teenager’s life.

Without MS, I would not have pursued a childhood dream of writing. It seemed silly, something unimportant and indulgent. MS forced my hand.

Without MS, I would not have experienced the fragility of life until I was a lot older, and perhaps it would have been too late? And the regrets would have been more powerful?

Me and my alternate shadow co-exist. We have to. As someone once said to me:

The darker the shadow, the stronger the light shining nearby.

Just The One Candle, Ta …

ancientYep, it’s that time of the year again when I’m staring down a Saga Holiday (see the world! make new friends! we have doctors and defibrillators on board!).

Obviously, I’m not quite there yet, but it’s getting ever closer.

However, the issue of my age was put into startling perspective when The Teenager, whilst hanging off the fridge one day, asked me how old I was when I had him.

’26’.

‘Wow! Like, that’s …  like, wow … old, yeah?’.

‘Well, ok, but if you’d behaved yourself and arrived on time, I would have been 25, so ner’.

He was due the day after my birthday but hung around for another week, dozing off every time the midwife wanted a poke around.

‘Hmm, he’s big, isn’t he? You look a little uncomfortable?’

‘Yeah’.

Almost 18 years later, The Teenager was aghast. ‘So, in, like 26 years time, you’ll be, like, 70? If we count your next birthday, which is like, a couple of weeks away? Or 69 if we don’t. To be fair. But, like, wow‘.

When you’re pregnant, they tell you kids will keep you young.

They were wrong.

As The Teenager loves music, I have to play along to ‘Guess The Year’. I’m always a decade or so out. Same for films. And major news stories. Is this what happens in your 40’s?

It’s strange because I seem to exist in a time warp. The Teenager plays almost exactly the same music I did at his age – Oasis, The Verve, The Beatles. He watches the same films. He wears the same clothes as my old boyfriends. And me, apart from the mirrored skirts and stripy tights with Doc Martins.

In fairness, I will grow old disgracefully and fully intend to embrace my hastening years and wear lots of black flowing garments accessorised with large beads and silver bracelets. I envisage giving readings of my eighth bestselling book to hoards of said Teenagers who will be rapt as they listen to me espouse words of wisdom.

In real life? I will no doubt reach 69/70 in the blink of an eye, much like my first 26 years, so I will do my utmost to cram every experience possible into such a slim window.

MS-willing …

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Stupid Is As Stupid Does …

stupidI adore learning.

I was never a gifted academic at school – good grades coming only after a hard slog – but the desire to learn was always there.

Perhaps it is a longing to discover more of the world than is immediately apparent, to get under its skin?

I’m questioning this as I’ve been encouraged to take a PhD, since completing my Masters. Even writing these words seems embarrassing. My second degree, the one that, pre-MS, was going to spring-board me into a promising career as The Teenager would then be out of child-care, ground to an abrupt halt as soon as the first symptoms appeared. After almost ten years of working in a low-paid, part-time job to be available for him, it was a bitter pill.

A Doctorate is an idle, long-held dream. It was something other people did, the clever ones. Not the ones who turned down a University place at 18 to move to Austria instead. If I’d done the former, I would now be a Russian-German translator, and who knows how my life would have turned out?

To get to the point that I could even think about the next step is nothing short of miraculous, and obviously I have the incredible MS treatments I’ve had to thank for keeping my MS progression at bay. But I would like to think it’s also due in some part to my sheer obstinacy. The days, weeks, months I spent with huge sheets of paper dotted around the house filled with random jottings and essay outlines. The fluttering waves of post-it notes on my desk. My tears when my brain refused to comply.

And yes, I tried to give up, many times. It all seemed impossible. Who was I trying to kid? But where does this obstinacy come from? Well, a very unlikely source.

Years ago, a partner of mine (who will remain anonymous although if he is reading this, he will know exactly who he is), told me over and over again how stupid I was. I had no degree back then, just years of experience working abroad and three languages under my belt. He had a degree and a post-grad qualification.

This became quite an issue, with every argument prefaced with, ‘well, as I have a degree, I feel more qualified to say …’. In frustration I challenged us both to MENSA tests. And what do you know, my score was higher. But in a way, the damage had been done. I believed I was stupid (it had been said often enough). And for years after, that voice followed me. Until MS came along and his voice was drowned out.

MS could have been the final nail in the coffin, and it would at least have been an excellent excuse.

But I have other ideas …

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I Like Long Walks On The Beach …

datingI’ll be candid – I was dumped immediately after my MS diagnosis.

Brutal, huh?

Yep, and then some. Mind you, it made life somewhat easier;

I didn’t have to give two hoots about what a partner thought. What partner? It gave me the space to concentrate on The Teenager and Me.

And for the last five years, it’s worked out superbly. I don’t have to worry about , ‘I’ll do what you want this weekend, dearest!’ (if The Teenager is out, I’m having an epic nap), or ‘what d’you fancy for dinner tonight, my sweets?’ (when your eyeballs are closer to the kitchen worktop than your face).

So, I chunter along, pootling around my plants and talking to The Cat, which, according to The Teenager, is precisely my problem. I’m too used to being on my own.

Perhaps. Or perhaps I’m scared of letting someone in to my space?

Perhaps I’m scared of being rejected?

I’ve mentioned before, but my dating profile is hardly enticing:

’43 year young, multi-lingual, well-travelled, peep. Divorced, single parent (other parent is very absent, like 3,000 miles away), oh, and I have an incurable neurological illness. But I look well!’

Therein lies the nub – I’m suspended between having an illness without looking like I have an illness. It’s mostly invisible, therefore, it’s what I tell you it is. And, like I said before, you only see me when I’m well. When I’m ill, I stay at home, with only Netflix and The Cat for company.

I miss being close to someone. I miss having someone who cares about me on a day-to-day basis, not merely during six month MS check-ups. I care about others, but there is that missing layer, when others will care about me; how I’m feeling, how that old fatigue is going, how my balance is doing.

In the back of my mind, I fear that this is it. Forever. According to some websites, I have more chance of finding love after 40 than I have of being in a plane crash.

Really?

Is that it?

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If You Were Still Here …

dadFather’s Day has always been difficult for me.

Dad died aged 35 a couple of months before my 5th birthday, from complications arising from his MS.

I don’t have clear memories of him, just a few snapshots in my mind, but I do remember the day he died.

I waved him off to heaven from a window, still wondering whether the bottle of medicine I had dropped by accident had anything to do with him leaving. I remember feeling desperate rage at whoever had taken him and wouldn’t give him back.

As I grew up, the concept of MS receded into the background; I simply regarded it as an illness  that could make people end up in wheelchairs, like my dad. I studied photographs of him, tracing his life from bright-eyed optimism to darker ones of him slumped in his chair. The difference was shocking and incomprehensible. I filed MS away in my mind.

Every year throughout primary school, the week leading up to Father’s Day was torturous. I would have to tell the teacher I couldn’t make the card, the gift. I was given other projects to do, seething with envy as my classmates spent hours chatting about their dads while they cut out bits of coloured paper.

One year, we had to draw a picture of our family. I don’t know why but I had a sense of overwhelming shame that I couldn’t put my dad at the beginning of the line of people. Instead, I drew my brother standing on a large rock, followed by my mum and then us, in the hope that as the teacher glanced at is, she would assume the figure was my dad.

Throughout my angst-ridden teenage years, my outrage against the whole world at the loss of my dad led me to backpack to Norway for six weeks after my GCSE’s in a bid to trace one line of my dad’s origins. It would take another six years before I accomplished this, but during that trip I felt more connected to my dad than ever before.

As I got older and life opened up, it was the major events that I missed him the most – my wedding day, when I gave birth to his grandchild. I couldn’t help but wonder what he would say, would he be proud of me, what would he look like.

And then, MS happened. I was 37. Suddenly, I needed him more than ever. He would be the only person who would completely understand the confusion, the anger and the fear. I hated him and I loved him. I hated him for not being here and I loved him more as I now had an inkling of what he had gone through.

I felt incredible, overpowering sadness that he was born a few decades too early to have access to the treatment I now have. There were no MS nurses, no DMT’s and no real understanding of this illness. It was termed ‘creeping paralysis’ when he was diagnosed back in 1970.

From the stories I hear, my dad was a determined and wilful person, with a vibrant and somewhat unconventional personality. If he was still here, I would love for him to be proud of me and how I live my life despite MS.

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