Five Years of Writing This Column. What a Surprise

John Connor avatar

by John Connor |

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Compared with living with multiple sclerosis (MS), the anxiety of what on water (Earth has always struck me as a misnomer as water comprises 71% of our planet’s surface) I’m going to write about next week is but a slight fluttering. Yer, yer, I know; underneath it’s really turtles all the way down.

In fact, if I didn’t actually have to write about MS, a column would take my mind right off my illness. A right-write dilemma. But you’ve got to go where the work is. Especially when my commute is thankfully these days only to the desk in my bedroom. Still, that’s exactly how I started out as a freelance hack 40 years ago. Who knew?

Adapting the words “Five Years” from my headline, the first track from Bowie’s seminal “The Rise and Fall of Ziggy Stardust and the Spiders From Mars” seems joyfully apposite. Especially as this is the album that finally broke him exactly 50 years ago this week. Up to that point, despite this being his fifth album, he was only known to the public as a one-hit wonder for the perceived novelty single “Space Oddity,” which eventually hit No. 5 in the U.K. singles chart two months after Neil Armstrong took his giant leap. Bowie had only managed a little hop on the spot.

Oh, yes, that’s better — my psyche enjoyed this interlude.

Better get to MS, hey, oh editor who must be obeyed.

It luckily struck me that as Bowie created personae, we are forced to do the same thing.

At root we might feel we are the same person, but are we really? MS has changed me. Instead of being responsible for those around me, I’m now their responsibility. As I can no longer put myself to bed, I have an early bedtime. Food is prepared for me. Can no longer safely venture anywhere on my lonesome. Hey, I once hitchhiked the entire Trans-Canadian Highway. That’s coast to coast, folks.

Instead, I’ve reverted to childhood.

Sort of.

I’m an adult aware of responsibilities — so there’s no kicking and screaming, pleading or mewling. Instead, special dispensation is granted for the Championship League (best football club team in Europe) final when an English team is playing. Slightly dodgy if it goes to extra time and penalties — that’s an additional hour, youse American folks.

Still, I somehow manage to continuously miss this bedtime boundary. Maybe the child is back?

At the end of his Ziggy tour, Bowie famously killed off the character.

If only it were that easy.

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Iain Pope avatar

Iain Pope

“At root we might feel we are the same person, but are we really? MS has changed me. Instead of being responsible for those around me, I’m now their responsibility.”

John, this to me is the killer. We are not the same person as before. If MS stopped at some point and the disability stabilised, one could build from that basis. Instead we are expected to watch ourselves worsen and worsen and become less and less independent. I’m a cane user, but get angry when the MS societies use photos of smiley people in wheelchairs with thumbs up. My anger stems from the well paid neuros not providing treatments to stop further disability accruing and from those photos acting as a crystal ball ie this is you in 3,5,7 years time. I was in a wheelchair after a bad relapse and hated it - talking to people’s navels, feeling vulnerable near roads and in busty places….. rather than assessing drugs on the reduction in relapses or lesions, I’d prefer a measurement as to how well the drugs enhanced a pAtient’s independence retained responsibility.

John Connor avatar

John Connor

Yup mate agree with the lot.
Stopped going to local MS society do's, Able Bodied peeps always hassled always us to volunteer to fundraise outside supermarketrs etc. Completly nonplussed when told 'em between work & f atigue - no chance.
Re wheelchair, cheer self up that am staring at groins!
Cheers John

Mark Genco avatar

Mark Genco

A few months back myself and my partner of 22 years sort of split up. I say sort of as we're still living together with our son but, there is no emotional romance there at all. Just like mates.
I remember one of her lines was 'you're not the same person...don't blame the MS'. Who would think being diagnosed with a chronic progressive neurological condition would do such a thing??
So I have gone from a person that walked everywhere, played football, went to gigs to a person that can't walk 1 step or write his name and, lets be fair, greaves for some kind of lost function daily!
Why has my personality changed...don't get it??!!

John Connor avatar

John Connor

Sorry mate.
MS grinds us down, but perhaps grinds our partner's even more.
It's not just the physicality - there's a poss that we've lost some of our emotional control in our forebrain.
Tuf 4 all.


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