Nige' Ollis

February 20, 2015February 20, 2015

What’s In A Name? : Chronic Research Disease

What’s in a name? as the Very Reverend Roland Fartfinger was once said to infamously remark. Well, if it’s Myalgic Encephalomyelitis [ME] or Chronic Fatigue Syndrome [CFS] or Chronic Fatigue Immune Dysfunction Syndrome [CFIDS], or at its absolute media derisory worst, Yuppie Flu, apparently quite a lot, as last week witnessed it undergoing yet another suggested name-changing metamorphosis: Systemic-Exertion-Intolerance Disease [SEID].

Twenty-five years ago my life was turned upside-down. In short, I flew to Canada, found myself unexpectedly hospitalised by what was said to be a particularly nasty virus and later flown home. I had no idea what had begun. Five weeks after returning home, and still mysteriously struggling with what was now labeled post viral fatigue, I wrote in my journal: “If someone had told me I would still feel like this after five weeks, I wouldn’t have believed it…” Twenty five years later and I’ve never fully recovered.

Around twenty-three years ago I was finally diagnosed by Dr Stuart Glover [a physician who had been working with HIV/AIDS patients who became curious by this growing subgroup of people, presenting with similar symptoms, but exhibiting no definitive biomarkers in blood tests, etc.] as having ME/CFS. And that conjoined name is an important distinction; essentially refusing to allow the neurological component to be fatefully ignored.

The proposed latest name-change has been recommended following the release of a 235-page report produced by the American influential government advisory body the Institute Of Medicine [IOM]. And it gave rise to these headlines in the media…

All the headlines I’ve seen are effectively taking a similar tone. Apparently, the disease that’s torn through my life for 25 years is real; essentially confirming the only thing that’s genuinely evolved in the 25 years of my own journey … a quietly repetitive stasis. The World Health Organisation listed the disease as a neurological condition in 1969. Meanwhile, our own government [UK] has continued to drag its arse, to the extent where it wasn’t fully acknowledged until the turn of the new millennium – in terms of easier access to disability benefits, where appropriate – and was still arguing its relative merits as a genuine neurological condition as recently as 2010. But here we are in 2015 still producing headlines regarding its reality; while the absolute reality of the condition is that it largely lumbers on in thinly researched and poorly funded darkness.

The Washington Post article contains the paragraph: ‘Christine Williams, who has the illness herself and is vice-chair of the board of directors for the advocacy group Solve ME/CFS Initiative, welcomed the IOM report. “I have been sick for six-and-a-half-years, and this is definitely the most encouraging thing that I have seen.” I find it quite depressing to read that. And I wonder how she might feel if she were to exchange 6½ for 25?

In terms of relative timescale, she reminds me a little of me …

When I was first diagnosed, to say ME/CFS was a vast grey area would be to undermine an easy adjective to describe a group-selfie of all the elephants that ever walked the earth! So, I began to educate myself as best I could, and became active in my own way by in turn educating the local hospital [FACTS Information Service] and then into the foothills of the brave new world [instigating and supporting UK-based online CFS newsgroups/forums] and raising awareness. It was an important learning period, but after probably about 6½ years … I stepped away; with it all becoming a little repetitive and exhausting, as well as feeling increasingly like it had begun to define me. I chose to look forward and gain a new focus: rediscovering my passion for photography and teaching [part-time] at high school.

Reading all this now … it’s as astonishing as it is depressing; to feel that in the interim decade and more, very little has really changed. And the significant new development is another suggested name change! Okay, in terms of lazy stigma, it’s welcome; particularly for those severely affected. One mother commented in another article on her own daughter – who sadly committed suicide after 25 years and was predominantly severely affected during the entire time “… calling the disease that ravaged my daughter’s life Chronic Fatigue Syndrome is a little like calling stomach cancer Chronic Upset Tummy.” And, while still lacking those definitive biomarkers, a focused diagnostic criteria is equally welcome – albeit I could’ve predominantly written what’s seemingly now accepted word-for-word … some 20+ years ago! And maybe, instead of wasting all the intervening time worrying about perceived realness, some truly in-depth worthy research were conducted instead.

Personally, I don’t dwell on all this too often these days; it simply began to consume too much of the energy reserves I did possess. So, I now choose to focus on what I can achieve – and can still achieve – rather than the spectre. But, even now, when I do bump up against news like this, I do find it quietly astonishing when I contemplate the numbers … 25 years. Approaching half my life! And, as near as damn it, I’ve spent nearly all that time educating myself as best I can; and managing the condition myself. No real treatment; outside the wonderful, and vitally important, work done by The Optimum Health Clinic; almost in complete isolation from the ‘health service’. I’ve largely educated my own doctor over the years.

When I look at these apparently ‘enlightened’ headlines today, some 25 years down the line, it rings a bit hollow. Albeit I’m more than happy to know that such announcements should at least help new sufferers avoid the indignity of stigma and plain, vague ignorance. And, hopefully, we will soon see further medical progress.

Finally…

ME/CFS has never exactly been helped by remaining poorly understood/researched, and additionally by the majority of sufferers making at least degrees of recovery [usually over a number of years but rarely returning to previous levels of health]; and often ascribing recovery to a prevailing ‘treatment’. So, it’s especially encouraging to see the report from Stanford University [October 2014] produce some genuinely potentially exciting research results, where radiologists discovered that the brains of patients with ME/CFS have diminished white matter and white matter abnormalities in the right hemisphere. I’ve long been convinced, like Dr Stuart Glover, that one day the answer would likely be found to be all in the mind – although not that necessarily espoused by the occasionally ugly, gong banging psychiatric doctors, like Professor Sir Simon “[I] could have been more diplomatic” Wessely … but in the brain.

Some additional links:

the ME Association [UK]

Action for M.E. [UK]

ME Research UK

Solve ME/CFS Initiative [formerly CFIDS Association of America]

Foundation for Fibromialgia and Chronic Fatigue Syndrome [Spain]

ME/CFS Society of NSW [Australia]

The National ME/FM Action Network [Canada]

February 19, 2015February 19, 2015

#MobilePhotoNow : Columbus Museum Of Art, Ohio, USA

Absolutely delighted to have my image She Came… And Went… In A Heartbeat curated for this impressive and important exhibition at the Columbus Museum Of Art in Ohio, USA.

Showing: February 6 – March 22, 2015

“Columbus Museum of Art and the #JJ COMMUNITY, one of the largest photo communities on Instagram, present #MobilePhotoNow the largest mobile photography exhibition ever organized by a museum. #MobilePhotoNow [February 6, 2015 – March 22, 2015] highlights the emerging art form of mobile photography, and the power of social media and smart phones as a means of creative expression and connection.

“CMA and #JJ partnered throughout October 2014 to post themed photo challenges that engaged the mobile photography community with inspiration from Columbus Museum of Art’s Photo League collection. More than 5,000 photographers from 89 different countries submitted nearly 45,000 images via Instagram. The resulting exhibition co-curated by CMA and #JJ community features more than 320 images from 240 photographers representing nearly 40 different countries.”

it would seem with only 0.007% of submissions actually being selected … I’m just trying to decide if that makes me extremely lucky, or extremely brilliant. Ha!

The criteria for submission was for images either taken and/or processed using mobile media. I invested in Instagram a couple of years ago as a potential new medium to express my creativity; partly due to my computer suffering a stroke; partly due to the school [where I teach part-time] furnishing me with an Asus MeMO 7 tablet.

I began processing older images – intrigued by the challenge of revisiting them with a new eye and, notably, Instagram’s default square crop. She Came… And Went… In A Heartbeat was one such image. And I’ve since moved on to capturing images with my smart-phone, as well as continuing to take images with my trusty Nikon DSLR, and processing these new images on the tablet. You can see many of these – mostly experimental, swiftly and intuitively processed images – on my Instagram feed here.

At some point I intend to reverse this process and potentially revisit the more recent images in their original full frame composition.

The exhibition itself has been picking up some excellent reviews from such notable sources as the New York Times, Newsweek and makes Brit & Co’s 2015’s Coolest, Must-Visit Art Exhibits alongside such luminaries as Roy Halston Frowick and Andy Warhol’s joint exhibition and Cartier!

June 28, 2014July 1, 2014

Glastonbury And Trench Foot

Some things are just meant to go together; albeit some are more readily appealing than others. Peaches and cream. Lemon drizzle cake with, uh, taramasalata icing. Glastonbury and trench foot is the classic formula, of course; as well known an equation as E=mc2:

G=rm2

[ Or … Rain + Mud + Music = Glastonbury ]

I honestly couldn’t believe it, though, when the inevitable Glastonbury torrential thunderstorms duly arrived after an entire month of unbroken sunshine and lightly baked earth.

I’ve never been quite unhinged enough to actually attend the legendary Glastonbury Festival, even though I’m only a relative stone’s throw down the road, but its appeal is very close to my heart. So… why aren’t I standing in the proverbial field? Well, I went camping. Once. “Never again”, I told my Post Traumatic Stress Disorder therapist while crying in her lap. Scarred me for life. But that’s another story, for another storm and tempest of an English summer’s day.

However, thanks to the BBC and my newly acquired flat screen television and sound plinth, Glastonbury 2014 still comes flooding into my living room… without the raw sewage. But it just didn’t feel quite right. So, determined to experience it fully, in the relative comfort of my home… I pitched a tent in the corner of the room and began peeing behind the couch.

As Friday evening drew in… I pulled on my wellies, filled up two big buckets with 1 part water, 1 part mud, 1 part bodily fluids, stood in the middle of my room, one foot planted in each, and gazed at the televisual marvels of the digital age. Well, I say gazed at it… To fully realise the authentic atmosphere I planted a few meaningless flags, hoisted an inflatable alien on a stick and erected some cardboard cut-outs of people’s heads who are just a bit taller than me and plonked them right in my eye line… So, in reality, I can only just see the top right hand corner of the screen. Perfect.

Later, after watching Friday night’s main headliners, Arcade Fire [and their one known song about Waking Up or something] – on my smartphone propped against the kitchen window while I stood squinting at it from the bottom of the garden – I grew increasingly hungry. Ideally I would’ve loved something hot, but couldn’t be bothered with imaginary queuing for some cow’s spinal cord in a baguette and still hadn’t quite worked out how to light the camping stove, so plumped for opening a tin of tuna with the rough edge of a stone and eating it with muddy fingers. Mmmm…

I wake up Saturday morning, cold and damp, to find some bastard has stolen my wellie boots from outside the tent! It’s a few minutes later when I realise that my wife has actually put them outside the back door and is wearing a disapproving expression. I thought she was staying at her bother’s for the weekend. She completely misinterprets the presence of the girls in wet T-shirts… It’s been raining! But the fact that I also persuaded them to wrestle in the mud is harder to explain away.

I finally cajole her into getting with the spirit of the weekend over a shared cup of cold tea and some damp bread, and we busily set about building a Solar Powered Wishing Tree in the garden. I hang up a cardboard sign that reads Healing Field and persuade her to give me a massage after spending a bit too much time aimlessly wandering around the house with a ridiculously heavy backpack all Thursday afternoon. Finally, I dig a rudimentary chemical toilet in the greenhouse and fill it with a dozen eggs that have been fermenting in its low heat for the preceding balmy month: the pure odour of authenticity.

And now, as the sun threatens to break through the clouds, and I sit here in my pants having neither shaved nor washed for three days while flicking bits of peanut shell out of my navel with a toothpick, I can only imagine how amazing Metallica will be tonight… singing along to all their classic songs. You know, the one about Nothing Mattering and, uh,… the other one.

I can think of no other place I’d rather be.

June 20, 2014June 20, 2014

England, My England

If you’re not English. If you’re not old enough. You might be forgiven for not knowing when England last won the World Cup. So, I’ll tell you… 1066. No, hang on… that was the Battle of Hastings. [We lost that, too, by the way.] Nope, it was 1666. [Pardon? Oh, the Great Fire of London, of course.] Then it must’ve been 1766.

Uh, at least that’s what it feels like! Actually, no! What am I saying with my chucklesome historical reference points… the fact that it was 1966, and I was 3½, means I have absolutely no recollection of that heady nationalistic home-of-the-game fervour. I vaguely recall the subsequent disappointment, aged a tender, yet football fever emotionally phlegmatic 7½-year-old, in the boiling Mexico heat of 1970 and a glorious defeat to the Pele inspired Brazil.

Since then England have served up a seemingly endless catalogue of temptation. That is, a glorious flattery to deceive… before the bitter reality bites home like chomping down on… not just a lemon. Oh, no. But an unripe lemon! World Cups, European Championships… endless, endless sweet cherries dangled before my eyes, then chomp… always the unripe lemon, er, painted a sweet cherry colour. So, not even just lemons, but a mouthful of paint! And most probably a lead-based paint! Which might account for much of subsequent emotional instability in the field of football. [Just don’t talk to me about penalties outside of a secure psychiatric unit.]

Until… this World Cup. Everything was calm; realistic; the lowest expectations ever. An England side essentially appearing vulnerable from the start, yet bristling with youngsters for the future. [Yeah, we’ve heard that before: the golden generation. One that subsequently delivered… lead-based painted lemons by the bucket-load!] So, what do they go and do in their first group match? Lose to Italy. But can they just lose and we all offer a hapless Bless ’em collective shrug. Oh, no. They play really well and lose. The worst kind of loss. Why? Because it raises expectations again. A very decent Italian side were considered fortunate to win, and we’ll breeze past Uruguay [after their lamentable first match performance] and Costa Rica… then who knows what worldly riches might lay just around the corner? [As the draw lines up, another glorious defeat by Brazil, probably! But that’s not the point!]

So, I sit – with my dear old dad [possibly for our last World Cup] – perched on the edge of promise. And what do we get… the sound of a large lorry reversing up the driveway, and on its side a mouthwatering image of luscious ripe cherries… which someone has roughly spray painted over with the word ‘lemons’. The bitterness never tasted so… er, sweetly predictable!

It feels genuinely lousy; like something of great anatomical importance has unexpectedly and alarmingly prolapsed. My dear old dad limps away into the night like a wounded, aged animal, muttering how he won’t be back for the entrails of Costa Rica. And I’m left watching the highlights… alone, knee deep in the detritus of shattered hopes and lemon peel.

So, some things never change. Or, apparently they do: it seems we’ve never enjoyed the particular misery of losing both our opening games in a World Cup before. Which must mean I now have the full England Football Misery set. [Panini take note – a special edition in the waiting.]

On a final serious note… [I’m used to hiding my misery well with gallows humour! 😉]

I was genuinely astounded to hear, having taken the eminent sports psychologist, Steve Peters – the man credited with underpinning the incredibly successful British cycling achievements of recent times – as the game kicked off last night we were informed that Steve Gerrard and Frank Lampard [the epitome of the lemon deliverymen of the aforementioned golden generation] had given a pre-match speech on the wretched misery of losing. So, these youngsters, untainted by failure, as a lift[?!], were schooled in the fear of failure before what was probably the biggest match of their careers, so far. How can that be a psychologically positive thing to do? It’s not exactly steeped in accentuating and visualising the positive, eh?! And maybe it wasn’t just coincidence that the team appeared almost collectively crippled by fear in that first half, and the opening minutes of the second period, too. Too late.

As for Uruguayan brilliant irritant Luis Suarez, half fit, with one good leg, the only thing missing from his armoury was a helmet from the Norman conquests; although he pretty much fired an arrow into Roy Hodgson’s eye.

May 29, 2014

Publicly Speaking : The Fear

For the love of sponge! I possess an almost pathological fear of public speaking. I’d rather plunge my face into a hive a bees – who are known to adopt a rabid stinging frenzy at the merest hint of the smell of jam – while wearing a face-mask … made entirely from jam!

So, when I was approached last summer by the steeped in history* Bath Photographic Society asking if I would consider giving a talk during their up and coming season of lectures, why exactly did I say yes? I know why… it was in part down to me going through a phase of accepting every opportunity, while also subconsciously safe in the knowledge that 27th May 2014 was not only forever away, but would most probably never come. Clearly, there was at least one serious flaw in my logic: that of the inexorable march of time.

* Bath Photographic Society shares the same birthday as Kodak Eastman in 1888; a year before the invention of the first flexible photographic roll film!

Essentially, I’m an observer, not a talker. [Although my closer friend’s might doubt that assertion when I’m talking all over them! The fear has always been associated with public speaking. I have inevitably had a couple of brief experiences feeding the pathology; predominantly recalling levels of hyperventilation in danger of sucking the entire audience from the room!] And now I’d committed myself to talk to a roomful of people for a mind-boggling hour and a half! So, how did this curious alignment even occur?

During the previous season of lectures my ex-friend Dave Lewis-Baker gave a talk on the History of Street Photography. “You’ll be fine,” he assured me. That’s … early retired Professor of Politics at Warwick University David Lewis-Baker: the professional lecturer! Since first meeting Dave about 5 years ago he’s been very supportive of my photography; and slipped two of my images into his own talk amongst the historical great and the good. It was in the aftermath he persuaded their secretary, Liz Bugg, to approach me.

Still, at least I had 9 months to prepare, right? Ah. See, there’s another flaw in the logic associated with hoping time stands still: fear induced procrastination. So it was probably less than 9 days before the talk when I finally began to select images and order a brown paper bag** from Amazon; which isn’t necessarily as crazy as it might sound, as I generally respond well to deadlines. But things did get a little hectic in the last couple of days, with the format only decided upon the preceding day – a hastily borrowed laptop [Thanks again, Dave – well, it was all your fault!]; realising the planned use of PowerPoint was completely impractical; writing onto cue cards; mysteriously losing an entire batch of images only hours before; a late morning timed run-through that hinted I might overrun – but with tweaks still to make; a subsequent timed run-through that hinted I wouldn’t overrun so long as I didn’t breathe, waffle and nobody so much as looked at me. It was too late to change anything now. I was halfway up the stairs to shower and make myself beautiful when I suddenly turned on my heels, returned to the slide-show and took out 20% of the images! A few minutes later I sat under the shower and wondered … at this late stage, would faking my own death be seen as an overreaction?

** One of the best concise pieces of advice had appeared on my Instagram feed from a virtual stranger no longer than 24 hours earlier: “Let your work do the heavy lifting. Know what you want to say, but approach the whole ordeal with a relaxed, devil-may-care attitude. Mind the speed of your speech, and pause and breathe often. What’s the worse that could happen?” I did reply “The worst? .. I forget to breathe often enough.” Scott quickly retorted “Alright, so you pass out. Just make sure there’s a great image on the screen… no one will notice.” I pondered the eventuality and thought of a backup plan: maybe, like the bus in the film Speed, if the images drop below a certain rate, the slide-show switches to auto… and the remainder of the speech is written on the souls of my shoes. Simple. What could possibly go wrong?

Street Photography. Following the gut feeling last moment 20% untested reduction in images the talk runs for... almost an hour to the minute! — You get the point: Street Photography. Following the gut feeling, last moment 20% untested reduction in images the talk runs for… almost an hour to the minute. Gasp!

Seascapes : The ethereal use of light in my coastal images. [Don’t give up the day job, Rob! 😉 ]

In the cool, relaxed light of reflection… it was a lifetime pathological fear duly exfoliated. I may well have forgotten to breathe in the first few minutes, but the warmth of the reception carried me through. And the subsequent feedback [anonymously requested], so far, has been truly humbling, as it is equally encouraging … now where did I put the jam?!

Feedback from past day or so:

Me attempting to get my head around new technology with the ever resourceful and helpful Chris. Dave Lewis-Baker looks on. — Me attempting to get my head around new technology with the ever resourceful and helpful Chris.

“…we saw a very personal exploration and a piece of your soul. You were articulate, thoughtful and thought-provoking.”

“It was wonderful to hear the how-where-when-why, for each shot, from the horse’s mouth – it made such a difference to my appreciation of what you have achieved.”

“Overall, the evening was excellent and ranks among the best that we have seen this year.”

It's getting serious now! [Dave Lewis-Baker looks on.] — It’s getting serious now! [Dave Lewis-Baker looks on.]

“While you are not familiar with public speaking, you clearly prepared very well and this delivered a top-notch presentation.”

“A very enjoyable and informative evening, up there with the best of them.”

“… well-balanced great presentation …considering it was you first talk your passion came through…”

“You were funny, very open and informative.”

“Excellent evening. I think your imagination and creativity are very original.”

“One of the most interesting evenings we have had.”

“A very inspiring and entertaining talk.”

Taken towards the end of the break. They seem happy enough?! And still awake! [I also had prints, books, etc at the rear of the room.] — Taken towards the end of the break. They seem happy enough?! And still awake! [I also had prints, books, etc. at the rear of the room.]

“… your knowledge of and passion for your subjects [made for] an amazing first ever presentation.”

“For me, you should have no qualms at all about your ability to talk publicly. Your knowledge and sincere enthusiasm with excellent images speaks volumes!”

The calming presence of BPS president, Geoff Wood.

“The photography was brilliantly original, esp. the street photography. I know of no photographer who can spot visual puns like Nigel… [the] street photography is a very personal development of Cartier Bresson’s concentration on people in their own environment, and can be viewed in the same context. He has the very rare ability to photograph people unexpectedly without causing offence.”

I’m indebted to… Dave Lewis-Baker for the initial shove and subsequent support; my great friend Rob Jordan, who filled the car journey to Bath with distracting laughter, helped setup and took a few photos as evidence; my wife, Sue, for agreeing not to come [maybe next time!]; and all at Bath Photographic Society for the opportunity [especially Liz Bugg for my exponentially frazzled emails and texts!].

And… breathe…