The World Turned Upside Down

The World Turned Upside Down
4.3
(10)

Being disabled constricts what my body does — but I’m still me.

For a long time, I was trapped as I could no longer self-propel my self-propelled wheelchair. Then last summer, my powered one turned up!

Wham-bam-crash-slam!

Never delicate, I instantly got to slam around in my very own Sherman tank! It was like giving someone dying of thirst a pint of 1959 Dom Pérignon (at $42,350 a bottle!). Now we could go somewhere and actually do something!

My wife and I decided to try going away for a few days last week. Neither of us can remember the last time we attempted this.

It’s not due to my MS, but rather family bereavements. We’re of that age in which we’ve had three in two years. Besides the obvious, the bureaucracy involved is life-numbing.

Lazing about at the seaside. (Photo by Jane Davies)

But my MS restricts where we can stay. These days, I sleep in a profiling bed. It lowers so that I can actually get in, but recently even that is becoming increasingly problematic.

So a profiling bed was our minimum requirement. We discovered we could hire one at just one London hotel. The cost was prohibitive, approaching £1,000 per night, all-in! (That’s about $1,300.) For that price, I might as well sit in my wheelchair all night and hang out in a suite at The Savoy!

There are also a few dotted around various Airbnbs, but we’d be pretty isolated if anything went wrong.

Then my wife, who’s far more diligent than me, discovered an amazing hotel in the seaside town of Bournemouth on England’s southern coast. Only 100 miles away.

The Grove is run by a local charity and provides all the benefits of staying in a friendly hotel but with a nurse on 24-hour duty. They also have something like five profiling beds.

Sundown at The Grove, Bournemouth. (Photo by Jane Davies)

You just have to provide detailed information about your illness — which is practical so that, if necessary, everything is to hand.

And, yes, something did go wrong.

We were in a bit of a hurry to get back for dinner.

I was also on a full steroids course and felt like some kind of MS super-disabled!

Somehow we both forgot to strap my chair down in the van. Weird, as we’d managed to put on my seat belt.

The trouble was we were heading up a steep hill away from the beach and all the action would be going the other way!

It duly did. And with a thump, the chair and me rolled onto our backs.

I felt remarkably sanguine about it — steroids like naughty drugs give one that ring of self-confidence.

We discussed heading for casualty (or emergency room) and deep embarrassment, but as we were near the hotel, we thought we might as well give that a go.

Anthony, the on-duty porter, popped out completely unfazed.

He helped me out of my chair, righted it, and lifted the whole thing down.

We had a lift on the van, but I think he figured he’d get a bit of a gym session in at work.

Service indeed.

As a tip, we got him a bottle of cognac.

The tip for me is to make sure I’m strapped down.

Otherwise I will end up tipping twice!

***

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

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