(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.
After posting my old song Speed Of Light which contains the delicate phrase “fucking in the summer rain”, I remembered this poem that I wrote about the same incident, with slightly more genteel vocabulary.
It’s part of the same series of poems as It is a hot evening in July that I wrote to try to capture a precise moment in time or emotion.
Moments 3 (10.7.87)
The lethargy of evening
insects in the long grass
the langour and the language
I will not find a meaning
I will not bind my feeling
soft rain silvers cobwebs
on the stone for Stan and Ellen
that we lie upon all grassy
when the world gives up its whirling
for an instant small as insects
in the calmness after climax
in the stillness of the twilight
we are here
Here’s the eulogy I delivered at my Dad’s funeral last Thursday.
Jeff Lawson, or (“Grandpa Fifi” as my kids called him, as when they were little they couldn’t pronounce “Jeffrey”) was born on D-day to Jim and Elsie. He spent his first few years with his brother Colin up in the North East for a while. One of his earliest memories was of running away from home, and getting on a bus to go and live with his Auntie, who spanked him and immediately put him back on the return bus. When his father retired, the four of them moved way down south to Southampton where he mostly lost his Geordie accent, although it returned after a few on the rare occasions when he’d had too many glasses of beer.
As a teenager in Southampton he developed a love of music, also shared with his younger brother Colin, and won a twist competition at the hop in the early 60s. In your order of service, you’ll see photograph of him and Colin’s wife Barbara shaking their booties at Jeff’ 60th birthday party.
He was the first Lawson male for generations not be a coal miner, and moved to London to join the civil service. After some time being generally groovy (see the photos in your Order of Service), he met Anthea and they married, honeymooning by being posted by the Civil Service to Aden, South Yemen, where I was born precisely 8 months to the day after the wedding. (They told their parents that I was premature).
On returning to the UK, they lived in Hastings where Guy was born, and then they moved to Birmingham where he and Anthea brought us up. Times were hard, so family meals were supplemented with home-grown vegetables that were planted in Party 7 beer cans, empty 7 pint beer cans that spontaneously appeared in the kitchen over the weekend.
Guy remembers that, when he would walk us home from the bus stop where we’d meet him after work, he’d always discover a stash of sweets hidden in the undergrowth somewhere by a mysterious person known as the Magic Man, whose identity is still unknown to this day.
We remember his proud acquisition of a music centre in the 1970s, where he would listen to ELO, Abba and Alma Cogan through headphones and “sing” along.
His singing style was unique – he never believed changing pitch was as important as maintaining a high decibel count. He nevertheless never tired of telling his family that some young girl had once told him he had a lovely voice. And so he had – when he wasn’t singing.
An example of his non-singing voice was when he had to go to a training course in Edinburgh, and he recorded a series of stories about an Octopus named Oscar on his cassette player for them to listen to every night before bed during his absence.
Jeff worked for many years for the Civil Service as a Welfare Officer – a kind of staff counsellor – along with John who later became his next-door neighbour. In his spare time he used to enjoy music, gardening and amateur dramatics, as well as brewing foul-tasting but strong beer.
Tim, a schoolfriend of ours, recalls “Saturday afternoon, I’d peddled to your house to find you and your dad sat in the back garden “testing” the home brew. I remember it getting very giggly. I think we had about 3 or 4 pints each. Guy had to go to bed after 2 pints”. On his way home, Tim was arrested for being drunk in charge of a bicycle. Two other friends of mine crashed their bicycles into a steel gate on a building site – there was no fence around it, just a free-standing gate.
In the late 80s, Jeff separated from Anthea and moved to London, settling in Eltham with his new partner, Big Bruce (so named because I’m “little Bruce”) and his dog Digger of which he was exceptionally fond.
Jeff found life as a Civil Servant dis-spiriting, although he loved the Royal Parks that he helped administer. So, as soon as he could, aged 50, he retired and the last 20 years of his life were full of activity – caring for his mother, Elsie, who moved in with him, holidays (lots of holidays!), acting and directing at the Bob Hope Theatre, listening to children read at a local school, judging gardens and volunteering to use his counselling skills at Stepping Stones, a support service for those with life-limiting illnesses at Greenwich & Bexley Hospice. Ann from Stepping Stones wrote to us saying “we have so many wonderful memories of him over many years working together – in his easter bonnet and dressed up for Christmas and yet so sensitive and compassionate with all our users.”
Four years ago, the day after his mother’s funeral here, Jeff had heart surgery to replace a valve. Once he’d recovered from that, he took us all to a large villa in France where we spent a lovely summer holiday – although the restaurant meals meant he couldn’t indulge his love on elaborate and detailed menu planning.
He remained healthy for most of his retirement – as recently as Christmas he was at our house with Anthea and her new husband for Xmas dinner, and – although he was suffering from leg pain that made it difficult for him to walk – treated the family to a weekend at Centreparcs in June for his 70th birthday. After his admission to hospital, he was still texting Guy and me to arrange to visit Centreparcs again at Easter next year “when I’m better”.
His death was sudden – he’d been discharged from hospital. We were on holiday at the time, at a place he recommended, and using a map he’d sketched for us. We didn’t cut the holiday short; he’d have hated us to, especially as Dalyan was special to him.
We’re comforted by the fact that it was sudden, swift and at home; he was a private man who hated to be seen frail and would have hated to “become a burden” as he would have put it.
We remember him with love, and are grateful that you are all here to do that with us.
As the proud owner of a teenage girl who’s turning into a fine young woman, I’ve reflected on the various stages of parenthood:
spending 49% of salary on baby food, and 49% on nappies
grazed knees and reassurance
helping with homework
realising you’re unable to help with homework
pretending not being sad when they say they hate you
making them work for relatively trivial amounts of money so they understand that money is valuable
being polite to spotty herberts with ludicrous hair and unstable voices (Teenage Boys)
“this is a house not a hotel”
The daughter is pretty well-equipped for adulthood. She already excels in many aspects of the curriculum at Bruce’s Finishing School for Modern Young Ladies® – she can fart outrageously, think deeply, belch loudly, accept differences, kickbox and knock down arse-gropers, play guitar, say “no”, say “fuck off”, spin out a really good joke to entertain both friends and eavesdroppers on a bus, get a paedophile deported, support her friends, swear inventively and hold her vodka down.
So I’m beginning a programme of watching classic movies with her. Not worthy art films, just those that have a different view of life, are surprising, or beautiful, or don’t portray women as idiots or trophies to be won, or simply those you’ll feel embarrassed saying “I haven’t seen that” at a student party.
Here’s a list so far:
Some Like It Hot
The usual suspects
Evil Dead 2013
The Big Lebowski
Un chien Andalou
Triumph of the Will
Kind Hearts and Coronets
Your recommendations (with a line about why) would be highly useful.
My university friend Richard was doing some paperwork at his house and found a magazine published in the late 80s with three of my poems in it, each of which I’d written to capture one single moment or emotion. For no other reasons than it’s fun for me to rediscover my younger self, and because right now it actually is a hot evening in July, and also because I want to pretend to be all sensitive’n’shit, here’s one of those poems:
It is a hot evening in July. You and I
lie, naked, on the bed. My cigarette smoke
dances in the sun’s fading rays, and hangs in the air
like angels, waiting. Are you awake?
Yes, it seems that you are.
You run your fingers through your raven-black hair,
slowly. Your eyes are half-closed. Your eyelashes are long.
Your skin is pale, glazed with sweat. Your lips are wet.
Stubble in your armpits. Nipples dark, erect.
One of your legs gently massages the other, so slowly.
I lie back, exhaling slowly, and kiss you.
But you do not kiss me.
I have often noticed this: you will reciprocate,
but not initiate. A clock ticks somewhere.
You retain fragments of a fractured innocence:
You remind me of a fallen angel. There are no words.
A smile comes to your lips and I say, What’s funny?
You do not reply.
It is a hot evening in July.
It is a hot evening in July:
humid; quiet. You sigh.
We breathe heavily, in unison.
The sound of next door’s radio
floats languidly through our window to the world.
You hum along, inaudibly. I light another cigarette as
you shift to your side to face me. I stare at the ceiling
and send a smoke ring drifting
which hangs over your head and dissipates.
Your hand rests on my stomach, your head on my chest.
My free arm around your shoulders.
I can hear your heart beat.
I can feel your heart beat.
Somewhere a clock is ticking.
You look up and smile to me; our eyes are solemn.
And then you kiss me and I could cry.
It is a hot evening in July.
As we approach a council and European election in UK, and are a year away from the General Election, the government is crowing that its years of austerity politics have put Britain right again. House prices are booming (in the South East) etc. 1.2 million new jobs are (apparently) created (but what kind of jobs?). “Welfare has been capped and immigration controlled, so our economy works for those who play by the rules”, say the Conservatives.
It doesn’t feel like a Golden Age of prosperity here in my past-its-heydey suburb of South Birmingham. Our high street supports two family butchers, and a greengrocer. But there are also two slot machine shops, several discount shoes and cheap clothing shops, as well as a slew of charity shops and places to sell gadgets/ jewellry for cash.
Here are some photos of my local high street; it takes 10 minutes to amble along this route – approximately 400m to walk up, cross the road, and walk down again.
There’s an Oxfam charity shop:
A shop selling plastic stuff and canned food for a pound:
A PDSA charity shop:
A cheque centre (for cashing cheques at a commission) next to an “Entertainment centre” (where people can buy sell phones, games consoles, DVDs etc):
A British Heart Foundation furniture and electrical store, where people on low incomes can buy cheap used furniture:
A branch of Pound Stretchers:
“Money for Gold Rope” where you can sell your jewelry:
Debra charity shop for cheap used furniture:
Cash converters, where you can sell your TV, DVD player. There’s always a queue to sell at weekends:
A Marie Curie cancer hospice charity shop next to a British Red Cross charity shop:
Acorns Children’s Hospice charity shop:
BetFred bookmakers, next to Scope charity shop:
Albemarle Bond pawn shop:
Bright House, a shop that provides “high-quality, branded products to credit-constrained customers, through affordable weekly payments. Our bespoke credit management processes enable our customers to get the goods they need, in a way they can afford”. It’s basically a high-interest hire purchase shop; the front page of their website today advertises a “representative APR of 64.7%”:
British Heart Foundation charity shop:
Charity shops do great work, and I love poking around them for CDs and books. But when most of your high street is charity shops, it’s difficult to believe the triumphant cries of “recovery!” from the millionaires in government.
2013 was a fun year. It saw my 5 year anniversary at Opera – which I actually missed when it came about, all the more surprising when I consider that I’ve never done one job for this long. (Previous records were Programmer/ Analyst at AT&T from 1988-92, Teacher at Amnuay Silpa School, Bangkok from 1996-2000 and Web bloke at The Law Society from 2004 until starting with Opera in ’08.)
As befits a tech company, I didn’t receive a carriage clock or gold watch. Instead, my CEO began following me on twitter. So now, I always wear a tie when tweeting. Just a tie.
Professionally it’s been an interesting and fun year. I got to visit Italy, Spain and Romania for the first time. Spain saw me in Barcelona twice, although the first time doesn’t really count as I was trussed up in a business suit and incarcerated at Mobile World Congress to leverage synergies in an aircraft hanger-sized conference venue. I have yet to go inside Sagrada Familia, so if any Barcelona conference wishes to have me in 2014, you know where to find me.
I also was invited to return to Scotland, Russia, Germany and The Netherlands and had the “fun” of two week-long trips to West USA in three weeks. Jetlag-a-rama. All worth it though, to mix with people who make the Web.
I’ve been spending time working directly with Opera’s desktop team. In 2013 we moved from using our own Presto rendering engine to using the open-source Chromium engine, and rethinking all of the features and UI. Results have been encouraging, but there’s more to do, so I’ve been working on gathering feedback, community engagement and planning next releases.
Working in products has been as interesting as I hoped it would be. Users talk very little about Web Standards – which has been my focus (=obsession) previously, but are very vocal about features and UI. I think this an encouraging sign for the Web generally; as browsers auto-update faster and rendering engines become more interoperable, there are fewer sites requiring specific browsers (although just as many breaking the web by requiring an iPad/ iPhone).
Due to the shocking revelations from Edward Snowden, In 2013 I’ve gone from the kind of person who mocked tinfoil hatters to someone who’s checking the signature of a Tails ISO. At Handheld Conference, my friend Aral Balkan announced IndiePhone, a new design-led, open-source Operating System and phone. I look forward to seeing how it develops, but fear that the tendrils of the NSA are too enmeshed in the infrastructure of the web to allow anyone to be free of intrusive surveillance unless they join the tinfoil-hatters in setting up the kind of countermeasures that consumers won’t understand or be able to do.
Some of you may know this already, but I can now announce it publicly. 2014 approaches, and promises to be an astrologically significant year as Jupiter turns retrograde, just as Saturn reaches the mid-point of Scorpio and as Mars enters Libra.
If you’re rich and consider yourself “Quite Spiritual”, you’re invited to one of my workshops. The first, which will take place on the Spring Equinox near Glastonbury Tor where the leylines meet, is Secrets of Mayan flower remedy healing: channelling the crystal tarot for wealth and success.
In this two day Meditative Chakra Healing and Negative Energy Banishment Retreat™, you’ll learn:
some regurgitated bits of the Upanishads that I found on free Kindle books that explain how your Soul can never be destroyed but, by conflating it with some misunderstood terms from pop science books, is Quantum Mechanically “remembered” in the fabric of SpaceTime, meaning that your spiritual essence forever vibrates in trees and flowers.
how the secrets of the Ancient Tarot’s “High Priestess” card affects your karmic balance
how to use some attractively polished stones to raise your Magnetic Resonance during Magnetic Pole Reversal, which can otherwise block your creativity by flooding you with “Negergy” – a kind of negative energy that I personally discovered during my time at an ashram in Spiritual India (Thank you).
how the power of song can free the shackles of your spirit bringing a feeling of lighthearted one-ness with your fellow Truth-Seekers and the Universe, through a process of Astral-hyperventilation™.
how to visualize what you want to create – and you will electromagnetically attract the object of your visualization.
how to commune with Angels in a group meditative attempt bring about World Peace, Prosperity and Increase.
This warm, friendly, creative, meditative space costs just £499+VAT. Mung Beans and Scrumpy are provided (bring your own roach material).
Please indicate your interest below. (Note, we don’t take Bitcoin as that’s pie-in-the-sky nonsense).
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’m not shy about talking about having multiple sclerosis (largely because I have supportive employers so I’m not constantly in fear of being fired as many disabled people are). So from time to time I get blog comments or emails from crazies who tell me that multiple sclerosis is caused by coffee/ aspartame/ invisible MS rays from the evil Quaziquarg, Lord of the Quarg People.
These people simply don’t understand the nature of scientific cause and effect. My fist and their noses would serve admirably to demonstrate how this process works.