Ten Years Post Diagnosis: Reflections or Fuck. This. Shit.

Apocalypse, Be nice, Chilling on my goddamn superyacht., Death, Dissolving into liquid sky, Fatigue, Feminism, Happiness, I'd like to sit down please, It's not fair, Lemtrada, Life is hard, Medication, MS, Multiple Sclerosis, Vegetarianism, Women

Ten years, then. At diagnosis I was 27nearly28, so the mathematically inclined reader will naturally put two and two together (or add ten which, in this case, makes more sense) to find that I’m now 37nearly38. Rapidly approaching my three-score and ten. Or forty. Ridiculous.

Imagine, if you will, a school reunion scenario – and that Facebook* never existed so everyone doesn’t already know everyone else’s business anyway.

“Ema, hello, please fill me in on the details of your life since last we met.”

“Gladly. I have developed and continue to live with a chronic illness. Plus I would never go to such an event and have no interest in your stupid life.”

Such are the workings of a fully adult mind. Look ye on my sophisticated brain and despair!

Think of a way to link this paragraph to the last! Thanks. Finally gone vegetarian. Pescatarian. Few pesca, many vege. I’m Being Ecological. Read this book, by Timothy Morton. Had to reread each paragraph about three times to give myself a shot at vaguely understanding it. We’re being ecological just by living, breathing and occupying the same space as all the other human and nonhuman beings on this planet, man. Changed my life. Or viewpoint. Or at least something. Another book. Not a good one but one I found helpful. The Unexpected Joy of Being Sober by someone but I can’t remember who. Also mindset altering. Plus, obviously not sober, but drinking less which is better. ‘‘Tis all a work in progress. We must be kind to ourselves. Stop beating yourself up! You are not in Fight Club.

See, being close to a human constructed milestone (Being Forty), has triggered in me a fix-ur-life-up kind of thing. I think it’s about surrendering to the process. What’s the endgame? Where do you (I) want to get to? Ethically, health-wise, fitness and body-wise. Aiming for well-toned-vegan-ethical-nightmare. Although.

Literally, it’s a return to the earth, the dust, the air from whence we came. (Out, out brief candle!) Surrendering to the eventual and inevitable end: a goodbad idea.

We’re not here for long so remember to turn the lights off and don’t make too much mess.

In conclusion. Reflecting on the last ten years through my MS-tinted glasses. It’s a bit shit, really. A more detailed and boring reflection: the Lemtrada‘s working, last few MRIs show No Evidence of Disease Activity (NEDA), I’m mostly exhausted which is awful, I bore myself.

End with a joke. Thank your audience. Vacate the stage quickly. Lights out.

* scandal-hit

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In defence of *my* quiet life. 

Anxiety, Be nice, Epiphanies, It's not fair, Quiet life, Shed of the year 2015, Summertime drinking, Why aren't I Patti Smith?, Worry

I agonised about whether the title of this post should be ‘In defence of…’ ‘a’ or ‘the’ quiet life. I went for ‘my’ because it’s specific: everyone’s life is different, right? Regardless of its volume. 

In my teenage bedroom the walls were, and I use this term in its loosest possible sense, ‘decorated’ with pieces of plain paper on which I would write song lyrics, fractions of poetry, snippets of my own awful, angsty writing. I was aspirational pretentious. One of my favourite lyrics at the time went:

Why live in the world when you can live in your head? 

From Pulp’s Monday Morning. And now I have part of an Annie Dillard quote tattooed on my arm, which goes:

But a life spent reading – that is a good life. 

Are you drawing a comparison?

Seems to me that I’ve always tended toward a quiet, non-experiential life. And herein lies the rub: is this something I should feel bad about? Should I hate myself, even just an small amount? Are all the books, the songs, the imaginings really an adequate substitute? Should I accept, even defend, the stillness of my life or should I turn up the volume, as it were?

The other day I was having a private tantrum wondering why we weren’t going away anywhere this summer when we clearly should be able to afford it. I was angry that I wasn’t exploring exciting locations, having my mindset slightly altered, if only for the duration of the ‘holiday’, creating beautiful memories or, at least, well-shot Instagrams – see how I try to belittle to reassure myself? 

But then I realised. We could indeed afford to travel somewhere that’s not here, except we spent our money on a new carpet for the hall and a lovely garden bench. The quiet life. And I love my house, being at home, nesting. Like a tiny bird.  And the bench, which I’m calling my Reading Bench, will give me real long term pleasure. So just shut up. But… It’s a big world, kiddo. And before I die, I’d like to see a bit more of it. 

I realise that this post doesn’t really live up to the promise contained within its title. Not really a defence, is it? It would’ve been more honest to write:

I haven’t had a holiday this year. Not fair. 

  

I can only disappoint you. 

Anxiety, Be nice, Damn like or damn comment on my damn blog! Thank you., Why aren't I Patti Smith?

As the crowd wait expectantly, the mood palpably begins to shift, from one of anxious-excitement to anxious-irritation. She’s almost an hour late, the group seem to think as one; all that anxiety has transformed them into a buzzing hive-mind. Dangerous. 

Then, finally, like the tide coming in, a ripple of silence makes its way from the front row all the way back to those bearded old blokes that are to be found at the back of every gig, ever, engaged in esoteric nodding. 

The lights dim. 

On stage, appearing to have been literally pushed, a single diminutive figure reluctantly makes their way to the mic-stand. 

The audience, as one, hold their breath. 

She speaks thusly: Er, guys – hey there – thanks for coming out to see me tonight – appreciate it – but – erm – the thing, the issue, the nub, is – I haven’t really got anything to say. 

A mumour of confusion, the shifting of feet. 

The thing is, I was pretty proud of my early stuff, but the well’s run dry, man. And, I know, I know, I promised y’all posts about the NHS, Right to die – but really – what have I got to say that hasn’t already been said more coherently, pithily, succinctly by countless others?  

Ema, I love yooooou! Some handsome and intelligent looking fellow shouts. 

Thank you *bashful wink* – What I’m saying to you tonight is, I’m not going anywhere, but you know, try not to expect too much – ’cause – like late 90s band Mansun – I can only disappoint you. 

In a hail of bottles, she exits the stage.  

 

The world doesn’t revolve around you, Ema. 

Be nice, Fatigue, Hay fever, MS, Sneezes, Tissue

Sometimes I need reminding of this. 

Yes MS is awful. And fatigue fatigue fatigue blah blah boring blah. 

But hay fever’s pretty rubbish too. Especially when there’s a VERY HIGH pollen count, as indicated on the little map I consulted earlier.  

 

Full disclosure: I don’t have hay fever. But D most certainly does. There have been more sneezes than silences this morning. And he is a flurry of tissue and watering eyes. 

And it’s an actual BEAUTIFUL DAY! Alas. 

Note to self: be nice. The world does not revolve around you, Ema.