Archive for the 'Multiple Sclerosis' Category

Leaving Opera

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.

BRB.

Addendum 30 November 2016. It makes me sad to announce that a group of colleagues – Andreas Bovens, Mathias Bynens, Shwetank Dixit and Vadim Makeev (the entire Opera Developer Relations Team) – who, over the course of the last eight years, have become friends, are also leaving. I wholeheartedly recommend each to any future employer.

Folk Off! inaugural gig

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.

Words / music © Bruce Lawson, all rights reserved

(Old demo.)

Kitty Fisher’s Locket

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?”

Words / music © Bruce Lawson, all rights reserved

(old demo with female vocals, Original while-writing demo.)

Calling for the moon to come

When I told you I love you;
we were under the crescent moon.
You smiled; she was smiling above you,
I was scared to be ridiculous or tell you too soon.

Now I have to go; so do you –
It ’s still hard, though we both knew this would be so.
I ache for you; I know you’ll be fine
if I call the moon to watch on you & shine

I’m calling the moon;
I’m calling for the moon to come.
to lighten your load,
and brighten the road for you.

I’m calling the moon;
I’m calling for the moon to come;
where are you going?
where did you come to me from?

I’m calling the moon
I’m calling for the moon to come;
now I leave you here in the sun,
I’m calling the moon

I hope that she’ll guide you
You say that you must walk this path alone.
One day I hope I’ll walk beside you
but there are things that I must do now, and I have to be gone.

I’m calling the moon;
I’m calling for the moon to come.
to lighten your load,
and brighten the road in front of you

I’m calling the moon
I’m calling for the moon to come
at the end of your day,
to comfort you; illuminate your way.

I’m calling the moon
I’m calling for the moon to come
where are you going
where will you come to me from?

Words / music © Bruce Lawson, all rights reserved

(Unfinished demo)

Cinderella, not quite

Here we sit at the edge of the world
and there’s darkness behind us.

Here we wait at the turn of the date
for the new day to find us.

I was watching you, you were listening to
all of the words that were spoken.

You said “a joining of ways for a couple of days
deceives me my heart isn’t broken.

“Maybe I’ll give you love tomorrow;
I’ve got no love to give you today.
All of my love has been begged, stolen or borrowed.”

When you’re dressed up in your rags tonight
you’re Cinderella – not quite.

You were watching the valley below –
not hard to find, no glass slippers for you.

Choosing the language to make our “hello”;
not hard to find in your dust-covered shoes.

I was watching you, you were listening to
all of the words that were said.

You said “Now our paths cross, nothing is lost
if we both forget the lives we have led…

“Maybe I’ll give you love tomorrow;
I’ve got no love to give you today.
All of my love has been begged, stolen or borrowed.”

When you’re dressed up in your rags tonight
you’re Cinderella – not quite.

Words / music © Bruce Lawson, all rights reserved

On Multiple Sclerosis, feeling ill, and heroics

(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.

Where’s my bloody Christmas card?

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.

So instead every year I give the money I would have spent to a charity. This year it’s going to the MS Society of the UK, which funds research into multiple sclerosis causes and treatments, and educates the newly-diagnosed, their friends/ family and employers. That service was invaluable to me when I was diagnosed.

They’ve been going for 60 years, and I’m proud to support them. I hope that you’ll be pleased with where your Christmas card actually went.

So, dear reader, whatever you celebrate (or don’t) I wish you a happy and lovely 2014.

Too scared of kettling to march

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”.)

Blogging Against Disablism Day

It’s Blogging Against Disablism Day. It’s also Multiple Sclerosis Week and the MS Society have published a report called Fighting Back – ordinary people battling the everyday effects of MS on attitudes to MS and disability in general.

Some of the statistics:

  • 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

My mankini allure is, thankfully, unaffected.

Hibernation

So, November’s been a big month—I’ve had a birthday and a cold, helped release Opera 10 alpha (Web Fonts, 100/100 Acid 3 and 30% faster…) and the draft British Accessibility Standard. I’ve been to Oslo twice, and toured Indonesia.

It’s been exhilarating, eye-opening and fun, but has taken its toll physically, so I’m officially hibernating until New Year to keep them pesky scleroses at bay.

If you need any contact with Opera until then, please seek out Chris Mills who can help. If you email me and would like an urgent response, please re-send it on the 28 December so it’s top o’the inbox.

If you find you’re missing me terribly, next week ZDnet UK will publish my first monthly column—a look at HTML 5 called “Will 2008 prove the year the web grew up?”.

Finally, have a Merry Consumerfest, regardless of which invisible friend in the sky your version of Consumerfest is dedicated to (if any). As regular readers know, I don’t send cards; I think sending pre-packaged sentiments directly into landfill via road and plane is wasteful, so I give the money to charity instead. This year I’m sending a few quid to a charity that my friend Henny is involved with called Stuff for Sam, which

is about raising money for our 4 year old friend Sam who was paralysed in a car accident in 2005. We hope to raise £30k to help buy him special equipment to stimulate and help him develop.

They’re nearly at that target if you feel like helping too.

See ya.

xxx

Life insurance, multiple sclerosis and discrimination

With my last job I had life insurance, but when I decided to move to Opera I had to get my own insurance so that my mortgage would be paid off if I shuffle off this mortal coil, reducing the burden on my wife.

So I rang the big brokers, moneysupermarket.com in March this year. A few questions about age, life-style etc and the guy on the phone told me that for a 41 year old non-smoker it should cost me about £50 a month. Then he asked the question “do you have any neurological conditions such as multiple sclerosis?”. On my affirmative reply, it was practically as if klaxons started sounding in the call centre.

So in May, a special nurse who does no nursing came to my door to extract some blood from me in order that Legal and General might learn just how risky I am. “You’ll hear from us soon”, said the lady who does nothing but take lepers’ blood.

But I didn’t. On chasing up money supermarket at the end of June (four months after my application), I was told to write a letter to Legal and General telling them where I will travel to for work and pleasure. No-one actually bothered to contact me to ask me for such a letter; presumably most people with MS develop compensatory telepathic powers, so it looks like I’ve missed out there as well.

Today they called to tell me good news: they will insure my life. Bad news: there is 100% loading on the premium even though MS is very unlikely to kill me before my mortgage is paid off.

As well as paying double, they will not give me critical illnes cover (that’s where you get the money on diagnosis of a terminal illness rather than when your toes curl up, so you can have a massive piss-up before you croak). So if I get cancer (which is of course nothing to do with MS), I don’t get a pay out. If you don’t have MS, but are diagnosed with liver cancer/ brain tumour, you do get a payout. This doesn’t seem fair to me; I don’t see a link between MS and cancer, AIDS and other terminal illnesses.

Am I an isolated case? Have you had any discriminatory treatment by the insurance industry because of a disability? (You can write to me privately at “bruce” this domain name if you prefer).