Friday, 29 January 2016

A never ending struggle....

Just a break.

A single, unadulterated, unassuming, open door, little push, kind of break.

That's all I'm asking.

And you wouldn't think it was much to ask under my current circumstances either.

Like most mornings, I awoke, curled up on the back seat of my friends Volkswagen Golf car, this time out in the styx of Chadwell Heath.

I'd got to sleep around 1:00 and was awake by 07:30.

This morning I was lucky and the ticket barrier guard at the station was helpful and courteous. It isn't always the case and often the first fight of the day is trying to get some moronic jobs-worth to let me pass onto TFL's network with my damaged Freedom Pass.

Whilst every other card in my wallet has been in there for 10 years or more and remains completely unperturbed, my Freedom Pass, living in exactly same circumstances, disintegrates roughly every 18 months.

Even though I should have been issued with a replacement Travelcard nearly a month ago, I am still hounding the Chief Executive of Southwark Council, Eleanor Kelly to resolve the problem.  The hold up seemingly, as ever, the issue of having no residential address.

With the rising number of homeless like me in the capital, you'd think that they'd have a dedicated department  handling this, but instead you deal with a generic call centre in bumfucknowhere who know nothing of anything.

But as I say, today at the station, no fight.

Well, at least not at the barrier.

Because the next fight is the soulless, brainless, apathetic, phone-drone called a commuter.

How these idiots endure this dirge of movement between, station, train, station, tube, escalator, light, is a question best left to future generations.

Impolite, inconsiderate, unnecessarily impatient.  It's a physical brutal fight, of shuffling, squeezing shoving and holding ground (it's ironic when I first came to London in 1996 everyone on the tube had the same intent, get to wherever they were going as quickly and as efficiently as possible, in 2016 its the complete reverse and seems everyone has all the time in the world either to watch films, listen to the radio or just meander through the corridors of tube stations).

For a Chronic Fatigue sufferer like myself, it's the worst kind of trigger.

A "trigger" is an event that causes a relapse of my condition. Something that sends a CFS sufferer spiralling back to their bed, deplete of energy in abject agony. Think of the worst day you've ever had the flu, that day where the slightest movement racked your body into unbelievable pain and your only relief was securing your favourite position in bed, lying perfectly still, wet cloth covering your eyes blocking out all light, breathing as shallowly as is able to still sustain life to prevent movement and further pain....

Now times that suffering by Ten.

Now remember waking like that at 3am in the morning, having had say, an hour an half's sleep...

That, is what it's like to suffer with CFS everyday of your life.

But worse than that, worse than the pain, worse than the sudden draining of energy is the fact that a "crash" for that is what sufferers call a relapse, could happen at any second of any day and last for any length of time.

The worst I was bed-ridden was 2 years straight.

The worst unable to talk, 3 months.

Longest time in a wheelchair 36 months.

I was diagnosed at 20, so for the past 27 years I've been living with this literal sword of Damocles hanging over my head, everyday is an immense challenge and my biggest fear is being derailed by something trivial or menial.

That public sector worker that you can't get to do their job. That train guard who is unnecessarily obstreperous, the person that promises something and then doesn't deliver.

And it's that latter, the assistance of others, where that break I opened this piece with comes in.

Last year began well.

A new girlfriend (youthful, exuberant, but damaged), a temporary address with her and health in the main, giving me 3 to 4 days a week to function at my best.

It was in this state I approached the Museum of London, my funds almost deplete to nothing and now forcing me to dispose of my storage unit possessions that I'd held for ten years, fundamentally to donate to a museum, to see if they wanted them.

Initial conversations were extremely promising, an exhibition about my life was on the table, akin to a living Pepys if you would. Excitement was palpable and the impossible in sight.

The hope that instilled from those decisions was manifest.  The need for constant adrenaline to keep energies up (a strategy every doctor will tell you ensures a "crash" of cataclysmic proportions) was fuelled each day, by the hope of finally achieving something worthwhile again.

And so it was that I volunteered my time, skills and efforts to the Michaela Community School on the request of Katharine Birbalsingh to produce for them their school video.

In an ironic twist of fate, I was able to do this with the assistance of a homeless Bulgarian Film editor, whom I met through a mutual friend.

He was in desperate need to produce something, I was in desperate need of an editor.

He had no home, I had no home. A film-makers match in heaven.

I'm proud of the work we did on that.  Even prouder under the circumstances it was made. The editor was desperately trying to sustain himself for a project before finally succumbing to having to return to his home. Literally surviving on a single peanut butter sandwich a day.

We even shared a couple of nights in the car together - he in the front, me in the back, to ensure no street sleeping and the ability to keep working.

This is what we made:  Michaela Community School - A New Education

But by the end of July the girlfriend had gone, the roof had gone and so too my energy.

But back to today's problem.

The Museum of London exhibition became a much smaller affair (Recording a Life in Show Space) than originally envisioned, it was claimed that it should be seen as a starting point for further work together, though I find it difficult to see how that will evolve.

But nonetheless, in September of last year, Chocolate Films very graciously gave me some space and access to computer and editing software in their offices in Brixton to begin editing over 200 hours of video film of 16 years worth of visits my son had made to see me in London.

Peter Ride at the University of Westminster had offered me some student assistance to sort out my storage unit on which I'd negotiated preferential rates with Access Battersea to be able to keep it on until such time all was removed.

And I finally retrieved possessions that had been kept in the homeless shelter I once resided at in Apsley, DENS that had resided there since 2014.

But the exhibition is underway now, the PR that had been envisioned for Our London Lives didn't materialise, not a single press release or listing getting a mention in any publication. The film was stolen before it had gone up.  Though requested a back-up at the museum was never made.

And so, I find myself editing again, co-ordinating the PR, doing my own social media, being let down on all sides and that, with my ever declining health, my energy levels dipping and a daily fight just to get around, is the problem.

CFS sufferers are the masters of Cost Benefit Analysis.  Every decision has to be weighed up and merited for it's benefits.  Do I shower OR wash-up, won't have the energy to do both, which is the most beneficial. Shop or Cook? Eat or drink?  We work in 10 minute chunks, we know the distance and energy required to get to a shop, but If the products we are going for have moved 3 shelves inside, we won't make it.  We'd planned and exerted perfectly but any deviation, we'll be reliant on the assistance of someone to get us home.

And that is why I want a break... only a little one...  that Time Out listing, that Evening Standard Profile piece that LBC radio interview... that's all just a tiny, easy, minuscule, life changing little break!

 It's not asking much... is it?