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Wednesday, 14 February 2018

Paying love and kindness forward - How the world should work

'Be one of the good guys'. That's one of only two life rules I give our young sons, (the other being 'work hard'. Not sure how good I was at that when school age). 'Be one of the good guys' plays well I think as an overall philosophy, but also as a parent, it works suitably loosely when I need to haul them over the coals for any - rare of course - transgressions. These two rules might not make them rich, but I'm hoping it will make them, and others, happy. Far more important in my book.

Yesterday, on Valentine's Day Eve, I received a fabulous note, via a stranger on LinkedIn of all places, reminding me of a kind, 'go the extra mile' gesture I had made over twenty years ago. At the time I worked for Disneyland Paris, as I had done since it opened in 1992. It was a magical, surreal time in my life, and on a daily basis I was able to do and witness amazing things. A hug with Tigger; a quick roller-coaster ride in my lunchtime; watching show rehearsals and testing new rides before any guest got anywhere near them; meeting 'A list' celebs, and Z list ones too, (most of them nice, honest); drinking gallons of Long Island Iced Tea in a Country 'n Western saloon in the presence of genuine cowboys and native Americans. Yeehah!

I had completely forgotten, but the message on LinkedIn was from a US-based chap. He was letting me know that I had organised for him to access an out-of-bounds balcony, (also after park closing, equally naughty!) at the iconic 'Chateau de la Belle au Bois Dormant. This gesture, doubtless breaking countless rules along the way, allowed Eugene to propose to his then girlfriend. 21+ years on, and with their 20th wedding anniversary looming, he was letting me know what I had helped him do, and what it had led to. I was incredibly touched that he found me and contacted me after all this time, and very moved to hear what a special memory I had contributed to.

Life as a disabled person, life with a progressive illness is tough beyond words, but I try to convey it as best I can. You'll read in the newspapers and online, on social media and via our shouty campaigning about what we are missing, what we are losing, what injustices we are subjected to. This is painfully true and I'll continue to scream it. But the other absolute truth is that millions of people out there are capable of overwhelming selflessness, thoughtfulness and kind gestures. Without these people in the world we would struggle to last a day.

Only late last year, a dear friend of mine launched a Crowdfunding campaign to buy me a funky off-road wheelchair worth a stupid amount of money. Donations piled in, and by January, the target was smashed! There were some amazingly high single contributions by individuals and companies, (thank you!). But I was equally touched by the many 'Anons' who contributed, or friends of friends and total strangers who did so. Or those who clearly couldn't afford it and shouldn't really have felt it necessary to help. But they still did. (Thanks in spades, thank you all!).

I understand that governments and oil and business and banking and corporations and all that malarkey are a big part of what makes the world go round. But rather than buying into Bitcoin, I would prefer to invest in kindness and empathy, as I have always aspired to. On second thoughts, maybe I'll invest in Bitcoin too, so we can contribute to other fabulous Crowdfunding causes.

Please be one of the good guys, the payback can be enormous... (Feels a bit preachy, sorry. I'm on a mini high thanks to Eugene, Sleeping Beauty's Castle, and a wacky wheelchair with a red seat that is on order.)

Friday, 2 February 2018

Moving on. Grief and relief in equal measure

Phew! Yesterday was my first day out of work in decades and I've survived. Coffee and pastry in bed courtesy of my gorgeous, hard-pressed wife. Bit of aimless internet browsing. Ordered some mouthwash and a boxed DVD set. A lot of chat and 'wowness' reacting to the overwhelming tide of support and love flooding in from social media. Twitter, Facebook both busy. LinkedIn bonkers, absolutely bonkers. 450,000 views when I last looked, and I only posted two days ago. Lovely, lovely comments to warm my confused and doubting heart. Confused and doubting because even yesterday, I really wasn't sure I had done the right thing. For me or for the family. More coffee by the sea to reflect and breathe. Multiple visits to the loo as a result.

My LinkedIn post was something of a eulogy to Dixons Carphone and how the team have treated me during my time there. After all, I strolled in twelve years ago oblivious to the fact I had MS. And rolled out in a wheelchair. All the time, from diagnosis through to departure, I have been so very well treated, and I won't forget it. Should be the norm, but it isn't....

I've been rather quiet on my blog, and indeed on social meeja, while I wrestled with the idea of leaving my safe, cosy job full of great colleagues and handy benefits. (Handiest of all, pay). Change is hard and scary at the best of times, but when I genuinely don't know what's next, it's just terrifying! Who'll pick up the phone to a bloke in a wheelchair? How long will my fuzzy brain stay not-too-fuzzy-most-of-the-time? This growing feeling of grief I have felt these last few weeks at the thought of leaving, and of missing colleagues. Will it go?

It's been perhaps six months of angst since it dawned on me - and Mrs W - that maybe I should move on. I was working harder and harder. A bit to prove to myself I was still functioning. A lot because I needed to just to keep up. Some point soon I was going to let someone down, and I was exhausted.

And 2017 didn't help at all in the whole process. It was far and away our 'Annus Totalus Grieficus'. Losing my beloved and beautiful younger sister. Leaving my own small hospital ward at exactly the same time, knowing that two brave, cheerful guys in it would soon be dead from aggressive cancers. Moving out from our dream home (and away from a dream group of friends) to kick-start a new existence by the sea. Experiencing a 'faux grief' when our then 11 year-old ran out in front of a car and was hit full on at 40mph. He was out of hospital the next day with only deep cuts, bruises and a bit of internal bleeding. A miracle, but the 'what if' hangs over us every single day, even now. And to cap it all, our kitten dying the very next week to bring everyone's trauma - especially our son's - flooding and wailing out... Oh, and then our gardener briefly disappeared down a gaping sinkhole that suddenly opened up. on our lawn Turned out to be an abandoned well, but made for a good story and summed up our year perfectly.

Grief, grief, grief.

So how do I feel now? Relief relief relief. Looking back, Dixons never put a jot of pressure on me. Hopefully because I was doing a half-decent job. Partly perhaps because they appreciated what was happening. The pressure was all me. Already I am getting back on an even keel. Now I have time to stretch and exercise. Moments to nap. And on the flip side, the phone-calls and emails haven't stopped with juicy opportunities to explore. So much so that I have pushed everything back to next week whilst I take it all in.

Leaving Dixons Carphone was a surreal and painful thing to do. Leaving colleagues I have kinda grown up with was awful. But now I know my body and the winning 51% of my befuddled brain was right. And Mrs W is always right. Onwards!

Friday, 8 December 2017

Bad news I was expecting still hurts

So almost on a whim it feels, we've moved house, moved counties, changed everything. We've trundled down the M3, leaving behind one of the most landlocked areas of the UK, and rented ourselves a chalet bungalow while we sell our own. The new one is just a farmer's field away from a cliff overlooking the sea and the Isle of Wight. Dazzling sunsets, blustery nights and the distant crashing of waves. Some bleating sheep chipping in from time to time. We've left behind fabulous friends - though it's been brilliant to have so many visit already (thank you!). We've swapped one set of family for another, and found two new schools for our boys.

Change-averse curmudgeon that I am, I'm learning to embrace our new life as well as I can, and that challenge is made so much easier because our children love it here! Coco the cat is purring too, though not sure the dwindling local vole population is as chuffed. I miss our old life desperately, especially my family and the MS support network which was so important to me. I've yet to re-establish that here and I know my health is suffering as a result. I'll get there. We've found a favourite pub, a favourite restaurant, a delicious Thai takeaway. Not quite the perfect chippie yet, but decent enough, and research is ongoing to fix that particular shortcoming. All in all, not a bad start.

Based on first impressions, and oh so important to us, the NHS set-up here seems just great. Lovely local surgery, prompt, polite, on it. Equally great hospital. An occupational therapist who cares, a few home physio visits booked, and a neurologist who is time-pressed (aren't they all?), but knows her stuff. We had our first meeting with her this week, and she ran me through the usual pile of questions and tests. Push against here, balance there, clench this tight, pull that. Bla bla bla.

But then the prognosis. I knew it was coming, I've feared it but felt it, and my last neurologist had already suggested it. Sadly, both the old and the new brain gurus are confident my MS has moved into a new and uncomfortable phase. Where once I was 'Relapsing Remitting', I'm now 'Secondary Progressive'. Complex wording for a complex development in my MS life. Essentially though, my condition will gradually worsen (well, it does that anyway, scarily fast right now), without some of the relapsing peaks and remitting troughs of yesteryear. An overhanging but small risk that I could worsen fast. No big deal. But the bad news, the really bad news, the bit I can't yet get my head round: there is now little or no medication to stem the relentless downhill journey of 'secondary progressive' MS. And not a great deal of advance out there in research terms.

I feel a tad bewildered. Most of us with this illness shout 'Cure MS' or similar battle cries to keep us going. We know it's unlikely, but just like the lottery, there's always a chance isn't there? Frankly, my new diagnosis means the odds of anything meaningful happening in my lifetime just dropped off a cliff. I've moved into the minority group of MSers. Drugs companies glaze over at the very mention of Secondary Progressive because there are less of us to make their millions on. Experts shrug because we're too far gone and our condition is even less understood than 'Relapsing Remitting'.

I'm a little lost, and it doesn't make life any easier for the long-suffering Mrs W. Hey ho. I'll cling to the fact our boys do like to be beside the seaside. And I'll live in hope we can find some decent chips.

Monday, 13 November 2017

One Long Goodbye

I went to my (huge, brilliant) company conference this week. I don't tend to go any more. Long journey, long day, too much noise, too much going on, wheelchair kerfuffle, loo shenagigans, solo hotel scariness. Everything.

But this year I suddenly felt conscious I might never attend again, for all the above reasons and more. I have known lots of lovely people from across the business for up to eleven or twelve years now. And even if I wasn't saying goodbye, it felt like that to me. So I girded my tired loins, dusted a suit down, and resolved to go. (I confess I also knew I could massage my fragile ego with a cameo in a 'people' film due up on the big screens, talking about how well the company and colleagues have treated me over the years...). Here's my green screen moment filmed a few weeks ago.

I got to the conference in one piece and surpassed myself by also leaving in one piece, if shattered. And in between I said a mental goodbye to big, bustling conferences, and more importantly saw some hordes of people I hold dear. I beamed as we shared a hug, a hand shake or an air kiss, though I was crying inside. In the 2,000 strong hubbub of colleagues, I missed more people than I managed to see, but I tried my best.

A progressive disease like multiple sclerosis has its own cruel, insidious way of dealing out crappiness. Over a period of months, or years, or days, you are consciously or unconsciously saying goodbye to activities, to events or to people. Long scenic walks, then short walks. Then any kind of walks. Parties past 10pm. Then parties full stop. Lots of stairs, then any kind of stairs. Dancing. Hopping. Kickabouts, Cooking. Ironing (hurrah!). Doing up top buttons, cufflinks. Pouring hot drinks. An endless list of farewells that just keeps growing...

Sounds sad I guess. Not just for me but for those around me. I am trying to put a positive spin on this but it's tough. (though see 'ironing' above and add 'unloading the dishwasher' for good measure). Disability does bring its own gifts, sliding you seamlessly into a parallel world of empathy and love and special people that sometimes blows me away. But it's so very tough feeling bits of me and my life - our life - drift away. Wonder what's next?

Friday, 20 October 2017

When your son gets hit by a car

Spoiler alert: he's ok!

23 medical professionals of all shapes and expertises were waiting for our eleven year-old when he was airlifted to Southampton hospital. 23. Mrs W, also emerging from the helicopter, counted them methodically in her surreal and terrified state as they swarmed around the patient.
It had all started as a bog-standard, bright and breezy Sunday morning. Team Webb and another family staying for the weekend, had popped out for a bracing stroll to the beach, giving me space and time to go about my slow-motion getting washed and dressed routine...
Twenty minutes later, in burst Steve, the other dad, gasping and flustered after his half-mile run back to the house. My hasty assumption that he had popped back for a phone or a wallet was quickly cast aside when I saw his startled, pained eyes trained on me. He struggled for breath and to gasp words out as quickly as he could, but I soon understood that our son had been in an accident. And whilst I was repeatedly being told "he's ok", I sensed Steve was somewhat 'white lying' to keep me calm.
After all, as I later learned, our son had waited for one car to pass only to run out in front of the one behind. He took the impact on his hip, was tossed onto the windscreen, casually cracking the windscreen with his head on his way onto and over the roof, then tumbling to lie motionless in a ditch on the other side of the road. He was briefly unconscious, so remembers only the impact, then waking up on the grass, surrounded by concerned family, friends, bystanders and a seriously traumatised driver.
I could only look on helpless and sobbing as I watched the Air Ambulance lift my son and wife to Southampton hospital - a nine minute journey as it turns out. Our agonising one, following in the car, was closer to an hour. Being reunited with Samuel in hospital and seeing him conscious and whole was heart-burstingly emotional beyond anything I've ever experienced. A long hug from Mrs W too. Bonus.

Long story short, Samuel miraculously got away with deep cuts, bruises, some internal bleeding, shock and concussion. A combination I think of luck, a sensible driver and superb care from the paramedics, then the wonderful team at Southampton Hospital. He was out in 24 hours, and doing a phased return to school just ten days later. The outcome could have been so different, and we're all still coming to terms with it.
A post I put up on LinkedIn, in praise of the NHS front-line response, has gone a bit (a lot) bonkers. 4.5 million views, just short of 50,000 Likes. And one troll, long since hounded off. Hundreds of comments, some heartbreaking, many moving, about care received.

I know we are quick to complain about wait times for appointments, hours lost in drafty hospital corridors. That's more often than not about resources. But when the chips are down, bloody hell, there are some amazing people working in the NHS. Thank you, thank you, thank you.

Tuesday, 26 September 2017

(Un)Happy Birthday to me!

21st. 30th. 40th. Decent excuses to party, nothing more... I've never really worried about milestone numbers as my youth boogied and boozed its way into the distance and middle-age snuck wearily and grey-flecked up on me.

But I'm 49 as of this week. And the fact that in less than a year I'll be 50 is... is, well, it's weird. No matter that I've already got a disabled badge. That I can only manoeuvre my way around the house with a fetching NHS walker. That venturing outside requires a wheelchair and that I have self-catheterised for years. 50 will be a strange one. Probably.

I got seven cards, two text messages, seven 'phone calls. So far so normal for a 49 year-old. I also got 120 Facebook messages, seven messenger messages, five tweets, 49 on Linked In (where did that bizareness come from? I got none last year to my recollection...). How the world changes, eh? 'When I were a young lad,' etc etc, said in a croaky 49-year-old voice.

Anyway, am marginally grumpy about it all because:

- 49. See above

- Our plans for a nice day out were scuppered the night before by one of our two cats. Coco took a glancing blow from a car (we think) and did some nasty damage to his jaw. Mrs W raced him to the surgery and didn't get particularly encouraging signals from the vet. Hefty bill though.. A nervous night followed for us as we constantly woke to check if he was breathing. He was, and by morning he was bouncing round right as rain (albeit with some bone exposed and on some heavy antibiotics, he's not been given any all clear yet. We'll pay some more bills before that, no doubt.). The happy result of Coco being unexpectedly alive was that we were exhausted, and neither did we want leave him alone. A pyjama family birthday ensued.

- This was my first birthday without my sister, who passed away almost exactly six months ago. Hadn't expected that to strike me so hard, but it did. I'm learning that grieving doesn't follow any pattern you expect it to.

- This was also my first birthday in our new (rented) house. Not the most disabled-friendly. We'll fix that soon, but in the meantime, bah humbug!

- On the plus side and to end on a positive note I'm still here and still working. Statistically I should have been cast on the scrap-heap by employers bemused or uncaring about my MS. I work for humans, and brilliant ones at that. Yay!

- On a double-triple positive note, dear friends, also celebrating a birthday, are visiting this weekend. We can chocolate cake it in style, and try not to look Coco too closely in his rearranged face.

Friday, 1 September 2017

Scorchio! MS stands for Multiple Sclerosis. Or Maddeningly Slow. Or Must-have Shade

Oh jolly good. For once, our nation achieved the impossible: glorious, sweaty, bank holiday sunshine. Facebook UK was a fast-scrolling feed of paddling pools, BBQs, sprinklers, sunburn, deckchairs and alcoholic excess. And though I didn't open a newspaper to check, I can 100% guarantee that somewhere there was a photo of a horde of sizzling humanity on Bournemouth beach. Probably a Brighton one too. 

And meanwhile I was doing everything I could to avoid the heat. As, I know, were thousands more of my MS 'colleagues'. Rain or shine, I start every day disabled. But every hot day, especially a humid one, and super-especially when I am in direct sunlight for more than five minutes, I stagger swiftly and rather miserably up the disability scale. I shuffle slowly round the house like an extra in a zombie movie. I doze fitfully. My speech gets slurry. (No jugs of Pimms were involved in the making of this crappiness).

It's the central nervous system that's in a mess for MSers. Signals from our brain and down our spine start to mis-fire or don't arrive at all. More so as we progress fitfully down the MS path. I don't understand why heat is such an issue for us, but it certainly feels like those fuzzy 'signals' get fuzzier. And maybe that very struggle to get signals through, is what exhausts us. Maybe. I dunno.

In the ultimate irony, it's a widely held belief that Vitamin D deficiency - probably in the womb and perhaps early childhood - is a key component in the cocktail of bad luck that leads to us developing MS. And where do we get Vitamin D from? The sun, mostly. That thing I have to avoid.

The exact cause of MS is unknown, but it is probably a combination of factors. We are thought to be genetically prone in the first place, but then a 'perfect storm' of other stuff is needed to trigger it. Possibly a virus is involved, probably also vitamin D deficiency. It is much more common in the Northern hemisphere, in zones where there is less sunlight. So Canada, Scotland etc are real good places to develop MS... I've read somewhere that MS saw a sharp rise in Iran after the revolution there, presumably because women suddenly found themselves under the veil and getting much less sunlight. (MS is much more common in women by the way). It is also pretty much unknown among Inuits, Eskimos etc. the assumption there is an oily fish diet gives them all the vitamin D they need...

So there we go. MS is (probably) caused in part by a lack of Vitamin D, and increasingly our neurologists are suggesting we take huge daily doses of it in tablet form. I certainly do. And yet the same bloomin' MS won't let me sit in the sun - which is the best and easiest source possible of Vitamin D. Best eat some nice fatty salmon tomorrow.