Sunday Morning

Sunday Morning

It was a sunny Lower East Side of Manhattan Sunday morning. The bulbous New York Times was shoved, just about, under my arm. I drank a coffee in the sheltered backyard of a diner after surviving the denizens of the street to get here — this was good shelter.

We were at the height of summer in the mid-’80s — the decade, not the temperature. It also was early — either I’d had a quiet Saturday night (unlikely) or I’d been up all night (likely). Whichever, the sun hadn’t heated the concrete enough for the acrid stench of rat urine to permeate. Lou Reed never mentioned that in his song!

The present-day Sunday morning, I managed to scramble out of bed on my own and was now sitting on my ever-present chair-commode feeling terrible. It was going to be a bad day.

For the next two hours, it was. My right arm ached and I could barely move.

Ibuprofen shifted the ache and my mood and body lightened.

Suddenly, I was tidying and getting stuck in the enormous amount of paperwork that had been getting me down. I breezed through what was left of my bookings work — six performers for every Tuesday until the end of September. I’ve been doing this for about 30 years and it’s still a nightmare.

Then, a whole slew of disabled paperwork was dispatched.

The U.K. left its bureaucratic imprint on India, where everything is purportedly still ponderously done in triplicate — I know someone who’s been in the thrall of it for at least a decade. But it’s also barely changed here. Nearly everything the disabled have to fill out is in writing! With MS, this obviously is challenging. I’m typing this now with mostly my speedy left hand. I write with my much-diminished right.

The powers seem to think that someone else will do it for us. Well, pardon me, but my wife has enough to do at the moment. If you don’t have a family carer, then good luck with the 30 minutes a day you get from outside government help. I still have a 40-page form to fill out by hand. I’d rather do a tax return, which at least in the U.K. we can now do online. Thankfully, I got an extension — never thought I’d be a student again!

To my own surprise, I was done. It was 5:30 p.m. I even had the energy for a shower.

The downstairs of my house is currently being adapted with a wet room big enough for a wheelchair. But for the moment, I have to clamber into a shower unit that at times can take hours for me to build up the energy for. Unfortunately, I can no longer clamber out of it on my own.

Also, because of my constant fight with lymphedema, I then have to bandage my lower legs and feet like an Egyptian mummy. It has taken me seven hours to get through this process. This day, I did it in two.

It started as the worst of Sundays, but ended as the best.

In fact, in Lou’s words, “It’s nothing at all.”

***

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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One comment

  1. Kathleen Regan says:

    Oh for heavens sake. You’re complaining about being tired while sitting down and doing paperwork? Get a grip. Try actually falling down, and trying to get back up without help. MS means we learn to deal with difficulties, not sit back and whine about how bad things are. I literally fall down almost every day. And I get back up without help because I have to. I’d welcome a day when the worst situation meant I lag in doing paperwork. MS can either kick your backside or you can work hard to control your issues. One makes you a determined person and the other makes you feel weak. I know, when I have to struggle to get up from each time I lose my balance and take a tumble, which one I am. I refuse to be the one who complains. I solve my problems. I don’t whine about my issues, that doesn’t help anyone, ever. Lead by example or get out of the way.

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