20 000 feet....

Recently another ms sufferer (is there please a better noun to describe us??) posted a quotation on fb that made me sit-up and do an instant double take. It wasn't about winning or being nice to cats or saving whales or remembering people with cancer, it was this:

Because if I tell the story, I control the version.

Because if I tell the story, I can make you laugh, and I would rather have you laugh at me than feel sorry for me.

Because if I tell the story, it doesn't hurt as much.

Because if I tell the story, I can get on with it.” 

― Nora Ephron, Heartburn

Yes 

I have been battling for ages to say something coming even remotely close to this in its very apt and complete insightfulness. I admit with utter shame that I did not know who Nora Ephron was before reading this quote but now I have read some small amount of what she authored and I am utterly taken by the prodigious talent that this person had, (yes had - as she is now dead from complications arising from leukaemia). But I read a fair amount of what she wrote concerning life and death and I think that she had a marvellous take on both nouns (evidently the words ‘life’ and ‘death’ are both nouns) and what she wrote above, comes closest to describing my feelings towards this disease, and what I write. I have been asked as to why it is that I am occasionally so flippant and sarcastic in my approach to ms. It is unfortunately because I am not a natural author (with correspondingly limited talents) that I am unable to be 100% flippant and sarcastic in my attention to ms.

This disease is quite simply, a truly phenomenal waste of time

So

Watch this hand..NOT THE OTHER ONE!…watch the hand making you laugh while I hold myself upright with the other hand and try not to fall over in the street. Do try and laugh at my attempts to negotiate life with this ‘thing’ and how it affects my family who battle quite heroically to maintain some semblance of normality. 

Talking about falling over in the street, a few months ago, I had to go to a meeting at the ministry of health building here in Wellington in the early evening. It was pouring with rain at the time, and as I got out of the taxi at the entrance to the ministry of health building in the rush-hour traffic (…taxi driver making me nervous because stopping here is not permitted, not permitted sir we’ll get into big trouble!) I slipped on the wet faux-cobblestones and gravity brought my face towards the street at high-speed, but as I lay in the rain feeling the pain shooting up my arms from my non shock-absorbing elbows, I watched my old rollator trundle at speed towards the startled people at reception, but for a kindly lady passer-by I would have really battled to get up again. Please understand that I am NOT at all gracious in my approach to this disease nor in my reactions to its situations so all the above was accompanied by me swearing loudly in various languages, so that everybody could understand that I was a very very unhappy teddybear. Some of my blistering invective was directed at the people huddling behind their counter in the ministry of health, and who all stayed there watching my antics in the street outside.

That day I decided to ditch the old rollator and get a lightweight one. Which I did.

Now, for my next trick I will require a bucket of water and a grand-piano……

It is amazing what having an incurable disease will do. One of the effects is to render me very open to trying all and every ‘cure’ the other is to make me very pro towards others finding said cure. If someone said that they needed baby seals to experiment on for finding a cure to ms, I would be out there front and centre directing culling….

As for the eventual course of this disease, who knows? We as a species are blessed (or cursed) with the ability to hope. It is what makes sporting events so interesting or elections so unpredictable. It ain’t ever over till its actually over.

I imagine myself as if in some 50’s pop-art picture of an out of control, bullet-riddled Mig fighter:

“Pull up Wing Commander, pull up!”…shouts the tower

“I’m hit, she’s outta control…it looks like I’m going in!!…”

………..will Wing-Commander King pull up in time or will he plummet to an explosive fiery doom… Tune in same-time same-place next week for another episode of:

The ms chronicles….