Before my sermon, a little housekeeping. Well, excuses actually. Because thousands, literally thousands of you have been screaming out for a new blog. Ummm, just a couple of people really… OK, no-one. Not even my mum.
Excuses, blandisms, in no particular order, but mostly pitiful:
– Refreshed my blog site thingie. With more examples of me and my twaddle in the media. And an up-to-date ‘About me’ page. Which previously had me working at Dixons. I left yonks ago. Procrastinating, moi?
– Heatwave. Wiped me out. Worth a whole blog at some point. Maybe I’ll leave that until next Summer. And if you hadn’t noticed, that finished a day or five ago. It’s Autumn and the heating is on. Awkward.
– Bladder infections, two. Neither of them serious and both spotted early. Good excuse to put things off though. I have some rather invasive and permanent procedures to consider. Yikes! [Joyful note to self: icky blog material].
– Multiple Sclerosis in all its sodding beauty. Always, always gives me plenty of reasons to delay.
– My fundraising ‘Virathlon’ for Shift.ms in Lockdown, featuring guest ridiculous haircuts. And bad dress sense. A great way to keep me fit, raise money and raise awareness whilst I am deprived of my beloved Wheelchair Rugby. And whilst I’m missing the lovely people at the https://www.chilternsmscentre.org/ , who look after me so well in normal times. They are straining every sinew and wearing out every deep-cleaning implement to operate as much as they’re allowed.
Enough procrasti-waffle. As I start to draft this we’re in the first U.K. weeks of the newly imposed ‘Rule of Six’, with harsher measures now being introduced. I tried to convince Mrs W, who often avoids the news, that it was actually the ‘Rule of Sex’. Sadly I got nothing more than a monumental eye-roll. Fully deserved. I live in misguided, waning, but nonetheless randy hope.
Not a lot has changed for me, as I have never really been *out* of Lockdown. In six months to date, I have wheeled to the hilltop where we live for an ice-cream, sneaked off to try out some funky exercise gear… And the two big ones: Firstly, overcome some nerves to attend my bro-in-law‘s 50th birthday in his garden. Vaguely normal group interaction! Loved it. Secondly, I quad-biked gingerly, grinfully and just about in control, round a socially-distanced muddy field. I won’t have changed my wife’s views that I’m an awful driver. Back in my safe, homely box now.
And so, from our snug, medium-sized hobbit-hole on the hill, I wanted to log a few MSy, Disabledy observations I have made in this, the weirdest of years in a very long while. None of this is original. It’s just worth cataloging.
By and large, the Lockdown might not have been so daunting for people with Multiple Sclerosis as for others. Isolation comes with the territory, to varying degrees. Every day of our chronic illness is lived with whiffs of uncertainty, rushes of doubt, soupçons of fear. And, quite frankly, we are very used to being deprived of things most people can take for granted. ‘Welcome to our world’ is a bittersweet phrase you are now hearing regularly from the multiple sclerosis and wider disabled community.
We’ve had additional challenges of course.
– Difficulties at first accessing shopping while loo roll and baked beans were gold dust, while we were being told to ‘shield’, and while online grocery services had temporarily melted down.
– Our eyebrows and heart rates flew sky high each time we were told that essentially ‘only’ those with underlying conditions are dying (“gee, thanks!” said millions of people with underlying conditions).
– Access to our regular health services, consultations and experts has gone understandably but worryingly AWOL.
– Treatments have been postponed.
– Carer visits have been rudely interrupted.
Meanwhile, some of the ‘new normal’ ways of living have sometimes felt rushed and hardly inclusive:
– I bloody love outside dining and hark wistfully back to my years living in France when people-watching and coffee (pre-midday) or sparkly (from 12.01pm) was very much the done thing. Parfait! Incroyable! Super! Still is, I’m sure. A slight difference to point out though. The pavements are wide, and designed for that culture. When we in the U.K. made an admirable race to help the catering industry – and our collective sanity – by shoving tables outside, well, great! But I saw too many examples of pavements entirely blocked. Romantic dining spots plonked on disabled parking bays. Grrr. Yes, absolutely grrrrrrr. Wheelchairs and indeed pushchairs getting nowhere fast.
Similarly with the new trend of ‘traffic-free zones’. Great, brilliant. Outside living, outside dining. All exactly the right thing to do. More Vitamin D and fresh air for all. But please: bollards and concrete blocks placed to divert vehicles (yay!), but also in the worst cases making wheelchair access difficult or even impossible. Grrrrrrrrrr etc.
I bloody love the idea of outside dining. Traffic-free zones might just help struggling town centres, communities, high streets. But can we come and play too? Please, pretty please.
And don’t even get me started on the various rushes to return to perceived normality, whilst thinking it’s fine and even necessary for everybody frail or elderly, or disabled, or sick, to be locked up, hidden away. Far cleverer people than me can find a solution. But relegating us to some kind of underground movement in the shadows. No, just modern day, empathetic no.
Far too ranty. Let’s find some positives.
Flexible working. Working from home. Zoom. Less hours devoted to commuting and less pollution. Tie and suit sales down, jogger sales up. Doesn’t work for everyone, but it can be done, can’t it? Can you hear the collective “we told you so”, sighed out from the disabled community? I’m hoping a positive outcome of 2020 and beyond will be more opportunities for the disabled. A narrowing of the shameful employment, unemployment, salary and glass ceiling stats? Too much to ask?
Empathy. In the angry, black and-white world this era inhabits, do I see a glimpse of light in our newly acquired capacity for kindness? Millions raised by Sir Tom. Billions of claps for the NHS. Gazillions of new conversations with neighbours, with hard-pressed delivery men, with friends and family. Even glimmers of positivity breaking out in pockets on twitter. (Not sure about that one if I’m honest..).
Time to reflect. I saw somewhere that environmental scientists will be able to look back on ‘The Great Pause’, after giant swathes of the world temporarily ceased almost all meaningful industrial activity and travel. Well, we’ve all greatly paused too, have we not? Not all willingly or joyfully of course, but still…
Personally, on Week One of Lockdown, I didn’t emerge intent upon learning Mandarin or taking up ballet. Once loo roll was secured, and FaceTime chats all set up with friends and family, I had a lot of 2020 to navel-gaze. My two personal life tweaks to emerge from the aforementioned fluffy navel:
1. More focus on daily exercise, particularly on what’s left of my leg function.2. Only working for, promoting and campaigning for ethical companies, products and people. Life is too short to think otherwise. And indeed in ranting recently at some ‘wide boy’ post on LinkedIn about making ‘loadsa money’, seemingly at the expense of everything else, I came up with a new mantra: ‘Enjoy today, leave a legacy for tomorrow’. That will now sit alongside the one I learned from my https://shift.ms/friends: ‘A diagnosis with [insert chronic illness here] doesn’t mean giving up on your ambitions, just rethinking how to achieve them’.
Plus the simple rules I have for our children… ‘Work hard’ and ‘Be one of the good guys’.
Oh, and the one my wife breaks on a daily basis. ‘Kiss me. Passionately. Daily. A lot’.
Here endeth the lesson. And normal blogging service is resumed.
Fundraisings *almost* over. But, well, y’know:
What a good read ! I have MS of the primary progressive kind so can’t move anything much except my right hand and foot. I was 48 when I got it so lots of adapting had to done. Shielding, isolation – whatever you call it wasn’t much different for me to start with but now it’s been so long since I went out past my front gate it’s beginning to bore even me. I too lived in France for 10 years but had to come home because I began to miss family, and this year is obviously a no-go for visiting. I get the impression that the world has changed beyond recognition, people keep saying things I find strange like having no cash to pay the window cleaner. Apparently people don’t carry coins anymore. Thank you this article, keep going with everything.
Thanks Belinda. Yes, the winter indoors will be a long one. I’ve ‘braved’ a couple of trips out in the last few days as a calculated risk. (The subject of my next blog if I can get my act together.
Can’t remember when I last saw cash!
Gotta keep it up now!
The wait was killing me. Thank you so much.
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