Yesterday, I received my first Covid vaccine. I was expecting to be in the next group of people invited, as I have multiple sclerosis, which is a disease in which my own immune system tries to kill me, and many Covid deaths are caused by the body’s own immune system. My good chum Stuart Langridge wrote up his vaccination experience; here’s mine.
Out of the blue I received an SMS on Friday morning:
Our records show that you are eligible for your COVID vaccination. Appointments are now available at Villa Park and Millennium Point. Book here: https://www.birminghamandsolihullcovidvaccine.nhs.uk/book/
Your GP Surgery.
The website is on a legit domain, and linked to a booking system run by drdoctor.co.uk, which was a pretty crap experience (which I reported to them); top tip: you need to have your NHS number to book, and if you don’t, you might lose your chosen slot and have to start all over again. And that was that; a confirmation SMS came through:
Confirmation of your appointment: Sat 13 Feb at 4:10pm at Villa Park, B6 6HE. You appointment at Villa Park COVID Vaccination Clinic is confirmed at Villa Park, Holte Suite, Trinity Road, Birmingham, B6 6HE. https://www.avfc.co.uk/villa-park/travel-parking
Villa Park is the stadium for the worst Birmingham football team, so it was nice that something positive was going to happen there. As I approached in the car, there were plenty of temporary signposts to the Covid Vaccination Centre to help people find it.
I arrived 20 minutes early (I’m paranoid about missing appointments) and although the site had told me not to enter more than 10 minutes before my slot, it didn’t appear to be crowded so I went in. It was basically a big room with check-in desks around the perimeter and at least 20 vaccination stations in the centre. The bloke at the door told me to go up to checkin desk 12; the lady asked me for my reference number (I hadn’t been sent one), my NHS number (I hadn’t been told to bring it) and then my name and address.
After verifying that I had an appointment, she asked me to sit on one of the chairs placed 2 metres apart, facing her (so we weren’t all staring at people having their jabs while we waited, which was a thoughtful touch for those nervous of needles, like me).
A friend had been vaccinated the day before at an alternate vaccination hub and there had been a clerical error which meant too many people had showed up, so it took her 3 hours from entering to leaving, so I’d bought a book. But I only had time to take the selfie above before a man came up and asked me to follow him to a vaccination station where an assistant was finishing cleaning the chair. I sat down, confirmed my name, and rolled up my sleeve.
The syringe was bigger than a flu jab and while I honestly felt no pain at all as the needle went in, it was in my arm for a few seconds as there was presumably more vaccine in there than the flu jab, which is pretty much instantaneous. Then the syringe-wielder told me that I had to wait in another area for 15 minutes before driving, laughed when I asked if I could have a sticker, but gave me the best sticker I’ve ever received:
I asked which vaccine I’d received; it was the Oxford one. She gave me an info leaflet, a card with a URL and a phone number for booking the second jab and graciously accepted my gratitude. By 16:06, four minutes before my appointment, I was sitting in the waiting area, reading my book for 15 minutes.
The whole thing was brilliant; calm, professional, well-organised and reassuring. Today my arm has a slight soreness (just like my annual flu jab) but I feel fine. Actually, I feel better than fine. I feel optimistic, for the first time in a year.
Doubtless, the government will try to claim this as their triumph. It isn’t. It’s a triumph of science and socialised public sector medicine. The government gave billions to private sector cronies for a test-and-trace fiasco and for the last ten years have underfunded the National Health Service. Many leading Conservatives have openly called for its privatisation. Remember that when the next election comes around.
Thank you, Science; thank you, social health care.
Here’s a talk I did at a lovely inclusive, anarchic, friendly conference last month called Monki Gras. It was great; a low ticket-price, proper food, craft beers and melted cheese snacks, a diverse group of speakers and a diverse audience. I made loads of new friends and heard loads of new perspectives.
After Opera’s consumer products (browsers and Opera Max) were taken over by a Chinese consortium on 4 November, Opera and I are parting ways by mutual agreement. I’m no longer a representative or spokesman for Opera products, or the Opera brand.
In my eight and a half years at Opera, I’ve done well over 150 conference talks, visited the USA numerous times; Norway dozens of times; Netherlands seven times; Spain and France four times; Poland, Germany, Romania and Russia three times; India three times (once for nearly a month, once for three days!); Indonesia, Italy, Denmark twice; Japan, Australia, Bulgaria, Sweden, Israel and South Africa.
Opera gave me the freedom to experiment with HTML5, and co-author a book with Remy Sharp; to play around and agitate for responsive images (now in all browsers!); to mentor my friend Lu Yu to become a speaker; to donate speaker fees to an NGO to buy computers for a Cambodian village school, and to sponsor conference diversity tickets so our industry can maybe become less of a white male club.
I’m hugely grateful to those who hired me and managed me for allowing and encouraging this freedom: thank you, Live Leer, Jan Standal, Andreas Bovens, Karin Greve-Isdahl.
I’m proud of the products I worked on, and hope they’ll be stewarded well in the future. I’m proud that Andreas Bovens and I got Progressive Web Apps into Opera for Android. I’m proud of the work I’ve done educating Western developers about the rest of the world. It’s been a joy to meet and work with many, many great people in Opera (shout out to Devrel and PR/ Marketing!), friends in other browsers, and across the industry. Thank you to all of you.
I wish all my ex-colleagues —those who are also leaving, and those who are staying— every success. I’ll be cheering you on.
Yesterday was my last working day. And now, as it’s the first week after my 50th birthday, I’m taking a short break to get over a mild flare-up of my Multiple Sclerosis, and to think about what comes next. Top of the list is training to be a buddhist monk while teaching poor/refugee children in South East Asia, or reprising my 1990s life on a beach earning money playing guitar and reading tarot cards. But those won’t pay my kids through university.
I most enjoy being a public face of an organisation that aims —however modestly— to increase the sum of human happiness via the Web and tech. If you have a job opening that you think would be suitable, and you’d like to rent a Bruce of your own, please get in touch (bruce @ this domain). I’ll still be avidly keeping up with the web industry, and conference talk invitations are still encouraged.
After my Multiple Sclerosis diagnosis in 1999 ate my fingers, I couldn’t play guitar any more, which pissed me off more than anything else about MS. But the songs kept coming to me, so about 4 years ago I taught myself to play (badly) again so I could write. Encouraged by a friend (thanks, Clara) and my daughter, I decided to do a gig, and last night was the night.
My old bassist from my punk band was meant to play second guitar, but he decided to break his arm and legs in a motorbike accident, so La Daughter taught herself to play guitar and learned my songs for her first ever gig, which makes me enormously proud. About five minutes after coming off stage, she was talking about out next gig, so Folk Off! are available for weddings and bamitzvahs.
Here are some abruptly-edited videos of the four original songs, written across 25 years and never gigged before. Trigger Warning: some guitar mistakes, from both of the players. (More tracks)
Gentle My Love
Gentle my love, gentle my love;
tonight we’ll admit no tomorrow.
Gentle my love, gentle my love;
predict or recall no more sorrow.
Gentle my love, gentle my love;
like the sound of the rain as it washes and cleans.
Gentle my love, gentle my love;
like the murmur of sea that claims everything;
But if we were to ride on the surge of a wave
We would never sink or drown.
Gentle my love, gentle my love;
Don’t hope for, or fear, all that follows.
Gentle my love, gentle my love;
tonight there will be no tomorrow.
If Kitty Fisher gives you pictures Make sure that you frame them.
“Here’s one I drew, that man’s you; It’s of heaven when it’s raining.
There’s saint Peter in a mac, he’s got two wings on his back. Do you like it?”
If Kitty Fisher, seeking pleasure talks of making love with you.
Softly kiss her, speak in whispers, watch how she moves under you.
Hold her while she weeps when you both come.
Let the silence in to soothe her.
If Kitty Fisher gives you treasure keep it in your pocket.
Memories in filigree That’s Kitty Fisher’s locket.
“That’s me and my mother when I was a little girl.
Do you think I was pretty?
That’s me in a forest, another time, a different place.
Do you like me?”
(This is sort of a public service announcement as I get lots of visitors who come here from a search for “multiple sclerosis”.)
I’m a bit grumpy today, not just because I’m in bed with a temperature of 38.7, sweating and occasionally coughing so hard I eject alarmingly yellow blobs of what is presumably some gelatinous form of plutonium, but because I should be at the airport flying to Oslo (where my employers are headquartered) for a meet-up with my excellent team-mates and the notoriously Epicurean office Xmas party. But I’ve elected not to go.
“What’s that?”, you cry. “You – Bruce – who plays punk guitar, does kickboxing and wrestles poodles (and wins!) have turned into Shirley Temple!” you mock.
Here’s the reasoning, in the hope that if you are a merry new recruit to the world of MS (I’m a veteran of ’99), it’ll be some help to you.
When you’re newly diagnosed it’s quite normal to be in and out of your neurologists’s office so often that the staff greet you by first name and soon start darting into stock rooms or crouching behind desks as you approach. You’re new, you’re worried and every tiny twinge sets of your anxiety. Later on, particularly if your kind of MS is cyclical remitting-relapsing, you might breathe a sigh of relief and start to think ‘I won’t let this diagnosis change me!’ and potentially push yourself too far. It’s not a good idea to be an MS hero.
As you probably know if you have it, MS is a disease of the auto-immune system. In highly technical terms, think of an MS person’s immune system as being like a crowd of drunk Millwall FC fans waiting for the opposing fans to enter their stadium. When they see the opposition, they’ll beat them up. But once the opposition is defeated, they’ll very likely smash a few windows, beat up some police, their own friends, set fire to their neighbours’ cars and then turn on each other.
Getting even more scientific, there are no police or windows in your immune system, so it will attack your nerves instead, stripping their myelin sheaths which will never regenerate.
As I write this, my eyes hurt if I move them left, right, up or down. This isn’t much fun – you tend to turn your head instead of having to move your eyes which makes you look a bit like a robot in a sci-fi film. But when this happens to me it’s a warning signal. One of my first MS presentations was going effectively blind in my left eye because of Optic Neuritis, which is an inflammation of the optic nerve that makes your eyes painful and vision darkened. (Mine was dealt with by injecting anti-inflammatory goo just behind the eye, a procedure which was pretty low in chuckles.)
I also have an increase in what I call “fizzy fingers” (due to my incorrigible love of alliteration). This is when my fingertips feel numb or full of “pins and needles”. I always have this to some extent – it’s why I can’t play guitar properly any more – and, to my eternal regret, it’s my own fault. When I was eventually diagnosed (3 years after the optic neuritis) my hands were basically not obeying orders – my handwriting was a scrawl, I couldn’t do my own buttons up etc. But I heroically soldiered on before eventually being admitted to hospital and being put on 1000mg of steroids daily in the medical equivalent of tear-gassing the rioting Millwall fans and shutting your immune system down so it can’t do any more damage. But the damage already done can’t be reversed.
So these days, when I get a little bit of a cold I soldier on. But when I start to get other more sinister signs, I give up and take to my bed. While I know that my team mates would love to sit in a room with me and my pathogens, inhaling the gift of a Christmas fever to take to their loved ones, and I understand that the ladies of Oslo have spent many weeks putting up welcoming street decorations, I’m vegging out until the auto-immune Millwall fans go back to their mums’ houses. (From 15 years’ experience, a couple of days.)
It’s not worth being heroic when the risk is irreparable damage (and I have 2 dependant kids, too). Your MS will be different; your level of heroism may be different. Good luck and take care.
You haven’t got one from me. But don’t feel weepy or left-out; nobody has. I don’t send them. Not just because I’m a miserable old curmudgeon (though I am) but because I think it’s silly to spend money on cards, money to send them (often via plane) so you can put it in a landfill after 10 days.
I used to love going on peaceful demos when I was a kid. Aged about 14, I’d be on a coach once a month to London, or Greenham Common or some US military base to march in support of CND, Troops Out or against the National Front.
When today’s anti-austerity marches were announced, my wife and I thought it would be great to march as a family, to show the government how we feel.
But I’m ashamed to say that I got cold feet. Recently, the Metropolitan Police have taken to “kettling” demonstrators. Wikipedia defines kettling as “a police tactic for controlling large crowds during demonstrations or protests. It involves the formation of large cordons of police officers who then move to contain a crowd within a limited area. Protesters are left only one choice of exit, determined by the police, or are completely prevented from leaving. The tactic has proved controversial, not least because it has resulted in the detention of ordinary bystanders as well as protestors.”
There have been reports of people being kettled for hours with no access to food, or to toilets. As a chap with Multiple Sclerosis, being contained with no access to the loo is unlikely to end well. More importantly, it’s likely to traumatise my kids, particularly my son who has learning difficulties.
So, we decided not to go. And I hate it that fear of the police has prevented four people expressing their opinion.
(It’s too late to help us now, but there’s an app called Sukey “designed to keep people safe, mobile and informed during demonstrations. We crowdsource updates from twitter and other online and offline sources in order to provide our users with a timely overview of what is going on at a demonstration”.)
One in five (21%) British adults surveyed think disabled people need to accept they can’t have the same opportunities in life
one in four (26%) Britons think bars and nightclubs are not places for people with wheelchairs
42% of people with MS admit to being concerned about telling their employer about their condition in the current economic climate
Over half (56%) of people with MS find it harder to socialise since their diagnosis, with around two-thirds (67%) saying their MS has hampered their ability to enjoy everyday social activities like drinking, eating out or shopping
The report concludes
MS is unpredictable and, perhaps largely because of this, widely misunderstood. It is different for everyone, and everyone responds to it differently.
But what most with MS have in common is a desire to live as full and active a life as possible before the condition strips more and more choices away from them.
I’m lucky; I travel a lot, do karate, and live a normal life. There’s a lot of ignorance about what MS is. The problem is that it’s different for every person. I was diagnosed in 1999 after I lost my vision in my left eye and the use of my left leg and arm. This is why my dancing is so crap.
Nowadays symptoms are
Tiredness. That’s why, if you invite me to speak and ask me to take a long haul Economy flight, I’ll need 2 nights e.g. a full day before the gig to recover
Clumsiness when tired, and slipping over on Oslo pavements in winter
Dry mouth and swallowing difficulties, which is why I drink gallons of water at conferences and then have to rush to the loo. (Apologies if I rush past you if you’re waiting to ask a question – I’m not being a diva, just seeking a pissoir)
Trigeminal neuralgia, random sensations like electric shocks, when touched unexpectedly, particularly on the face