Category Archives: Emotions

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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Manchester

darknessI was shaken awake at 1am this morning by The Teenager.

He had watched hours of rolling news of the atrocity in Manchester and couldn’t bear to be alone any longer.

We sat together downstairs, watching the tv, discussing what we were witnessing, both of us crying.

His father is from Manchester and it is a city he has frequently visited to catch up with his grandparents. He has friends there and they meet up to go to football matches, restaurants, shopping. He is due to travel there on Saturday to watch a concert at Old Trafford.

He was adamant his plans wouldn’t change and mentioned he has grown up with terrorism. It is a topic we have had to return to over and over, as I’m sure it is with other parents. We were still living in London when Hammersmith Bridge was bombed in 2000. The day the Towers fell, I left work early, picked him up from nursery and held him tight, watching the news in horror as the Manhattan I had lived in and loved seemed to disintegrate before my eyes.

When 7/7 happened, he began to have nightmares. He travelled through to London every month to see his father and had been doing so since he was four. He loved travelling on the Underground. Now he was six and it took months to work through his fears and he often woke screaming in the early hours.

Together we watched the events in Paris in 2015. There were more discussions. How were we to respond to this roll call of tragedy? We were helpless bystanders and could do nothing.

And now Manchester, an attack deliberately aimed at young people. People like The Teenager. I never like to write meaningless tweets or posts, but my heart is truly breaking for all the parents affected by this.

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What’s Five Years Between Friends?

fiveWhen I was a kid, five years was the difference between mittens with a string through both sleeves and a proper pair of gloves to make snowballs with stones in them (I grew up in Scotland, natch).

Or being in Primary School and Secondary, where you got your head flushed down the toilet on a daily basis.

Five years is huge. Massive. Like, really big.

Now, on the cusp of my five year MS-Versary, it feels … weird. I don’t feel that much older or more informed. I still tug those metaphorical mittens, making sure they’re safely attached.

Perhaps with an illness like MS, with so many new medicines and numerous medical trials, we struggle to find out exactly where we fit in the MS Scale, Bad to Worse.

I remember clearly the night before My Diagnosis. It was Make Or Break. I was going to present my neurologist with every last scrap of evidence (carefully assembled in my MS Notebook of ‘Most Notable and Curious Symptoms’). I was fully armed. After ten months of wandering in the wilderness, experiencing relapse after relapse, I was ready.

As it was, that same neurologist peered at my brain on his computer and said, ‘yes, MS’.

I was stunned, hugged my MS nurse for a very long time, clutched the leaflets she gave me, went downstairs and bought a Boots Meal Deal for lunch.

I went home. I cried. A lot.

Now, five years on. I’m much more savvy, sure. I’ve re-adapted a whole lot of things in my life. My main aim upon being diagnosed was to get my son in to University and I’m now mere months away. I’ve almost done it.

However, he’s no longer fooled with my Sofa Command Centre. It scares him when I sleep a lot and I don’t blame him. This last relapse has been a cruel trial at one of the most important junctions of his life.

But I’m still here.

I’m sanguine now, I think. I hope. Life is easier now I have accepted how much more difficult it is. Which sounds strange, I know. Last week, I thought my epic relapse was over and then, blam, I fell asleep twice in one day. First time was on a site visit. I was in the van, which was a bit awkward -the boss woke me up strapping soil pipes to the roof and I thought I was being attacked by vampire snakes.

I’ve taken to working in our new office, which is lovely as I have coffee on tap and I can play music on the Mac. I create colourful charts and add up scary figures for the boss.

Ultimately, this MS-Versary will be understated. Long gone are the days of my Pity Party For One. I don’t rant and rave. I don’t rail against the injustice. I will only put up one banner, and have two or three party poppers.

I will reflect. On what it is to be human. We will all get sick. Just some of us sooner than others, natch?

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