Sunday, 17 December 2017

Help For The Helpless

It snowed at the weekend.  beautiful, sloppy flakes slaloming from the sky, glowing as if from within with reflected light from the Narniaesque lamp post outside my window.   a chocolate box scene of nostalgic Christmases past, replete with warmth and camaraderie.  well.... not all Christmases, not the one spent in a squat sans electricity, running water or glass in the windows, waking to a layer of ice on the thin blanket, a tummy as empty as the food cupboard, the black eye of a large rat contemplating whether my chin would make a tasty breakfast, i in return wondering if a candle would generate enough heat for rat stew. it's strange how candlelight can evoke such an extreme of memories, either cosily snug when lit by choice in the security of a safe home, ecclesiastical at an Advent Service or signifying loneliness and want when imposed by poverty. 

That season didn't hold a great deal of joy or merriment, the warmest moments involved a Salvation Army Band and tea laid on in a bleak church hall by people of goodwill who gave up a Sunday afternoon to feed us waifs and strays, simply because they could and they cared.  it was their kindness shown through coffee and sandwich that started me on the road to redemption, such a simple offering saved a little lost soul at no great cost to the givers.
We were a raggle taggle bunch of misfits unified by one fact.... for various reasons we couldn't go home or we had no home to return to.  we came from every social class with varying degrees of education and wealth.  one young man had been thrown out of home because he was "a pansy".  his adoptive parents believed a real man was a hard drinker who worked with his hands and beat his wife.   john was a philosopher, a dreamer, a poet who taught himself renaissance guitar on an instrument missing several strings and read Plato.  some had learning difficulties and simply didn't know how to manage the intricacies involved in maintaining a home.  there were many with mental health issues who wandered the motorways vainly trying to outrun their demons.  family violence and abuse was a recurring theme making a shop doorway  a marginally safer option than their own bedroom.   none of us woke one morning and decided homelessness and poverty was our career path of choice, we were all victims who had run out of safe places to hide
For a long time after leaving the streets i would wake in the night and pull the blanket onto the floor and sleep there in solidarity with my soul kindred still suffering the depredations of street life.  even now, decades later, i wake and my mind's eye wanders the doorways and alleys, the dark spaces, the dangerous places and seeks out the damaged in spirit, the broken of body and shivers vicariously with them.

Last week amongst the Christmas shoppers laden with bags, standing next to a busker blasting out Jingle Bell Rock was an older lady selling The Big Issue.   she had the wary, weary look that i wore all those years ago.   I found myself wondering about her story and the road that brought her to this little market town relying on the generosity of strangers for a meal and bed that freezing night.   what cruelties and inhumanities had she experienced to bring her so low at an age where most were looking towards a gentle retirement in the company of loved ones,  and i remembered the past.... as i often remember.... and i bought her magazine.... and felt impotent.... as i often feel impotent in the face of great need.

Some believe it's the responsibility of government to provide for the vulnerable, and they are right but our government doesn't care, its policies show that,  from the reducing of disability support to billions of pounds worth of cuts to the public services that help the weakest and poorest.   some believe that charities should fill the gap, and they try but many charities rely on government grants and they are being relentlessly cut.  some assume homelessness could never happen to them or anyone they love and in their shortsightedness fail to recognise that the hungry soul in front of them could be any one of us given certain circumstances.  some simply lack imagination or compassion, their hardness of heart an indictment of first world selfishness, we have become a society that is rich in matter but poor where it really matters, we have forgotten that a society is judged on how it treats it's weakest members.  

So this Christmas if you see a dirty bundle huddled in the cold try giving it a name, call him or her john or jeni, because once it was us and it's only because some strangers with a conscience saw us as fellow human beings and took the time to care that we aren't still there or, more likely,  found cold and stiff one snowy morning.

Saturday, 25 November 2017

Human Hedgehog Chimera

DIDDLY DIDDLY BONK....  a text pops up on my phone, "hello, are you there?"  snuggle deeper into the duvet and hit delete.

BOING.....  an email drops into the inbox,  "haven't heard from you for a while is everything ok?"   light another candle and immerse self in  Margaret Atwood's dystopian universe.

PING....  a Facebook notification proclaims it's arrival,  turn to Netflix and hug The Indomitable Fred closer.

Is she poorly?   anti-social?  engrossed?  otherwise committed?

No, none of the above can in all conscience be claimed to explain the absence of the jeni from these pages recently.  so what's the problem?  well you see, i think i'm a chimera and the cells i share with the hedgehog dominate once the leaves turn russet and fall.  frost covering the tops of cars and roofs, dark mornings, a frozen bird bath, the scent of wood-smoke all conspire to trigger a deep desire to stockpile carbohydrate, lay down an extra layer of fat, line the universe in duck down and hibernate.  thought processes become sluggish, muscles tighten, joints lock, and the ability to focus on  something even as enjoyable as writing for you becomes an effort too far.
It would be nice if i could say this is a side affect of ageing or disability, that in my youth i embraced the changing of the season with vim and vitality, that i relished watching fireworks with feet of frozen plasma and revelled in the donning of padded jacket and leg warmer, but it would be blatant dishonesty.   

The irony is that i actually love autumn in many ways.   the golden light from a low sun, drifts of crunchy leaves, the clean, crisp fragrance of loam bring back memories of dawn walks by the banks of the Cam, one child swaddled in woolly hat and scarf tucked up warm in the pushchair with only a little red nose exposed to the misty air, the other engaging swans in a breakfast of surreptitiously hidden toast crusts, remnants of a hasty, early departure.  the sense of another year of life passing into memory, its pleasures and pains being consigned to history and the adventure of new beginnings beckoning at the next turn of a corner fills me with hope and curiosity. 
Whether the root of this desire to vegetate is physical or emotional is an unknown, yet it happens every year and it always takes me by surprise. one morning i wake and am enfolded in a mantle of lethargy, an ennui that saps the soul of motivation.  it's not necessarily unpleasant or even on the level of awareness it   the first inkling of it's presence is when those who love me become aware of an absence of jeni online as words dry up.   the home library ladies will comment that i'm devouring more books.   my desk slowly starts to buckle under the weight of unsorted paperwork.  the wheelchair gathers a layer of dust as i dig in for the duration.

Around the third week of November subtle signs begin to impinge on awareness until the inevitable eureka moment gallops over the horizon, usually via a conversation that swings from rhapsodising over autumnal beauty to bemoaning a lack of inspiration.   once the source of unbalance is located steps can be taken to move beyond stultification, to become more human less rodent.
How do these conflicting states co-exist?  it's all part of being a human/hedgehog chimera of course.

Wednesday, 27 September 2017

Minimus and Maximus

Myers-Briggs, Taylor-Johnson, Pearson-Marr..... noooo not the names of solicitors but of personality tests, those wonderful multi page, multiple choice questionnaires that we use to justify our less attractive attributes.   "It wasn't my fault guv honest, my Myers-Briggs Indicator made me do it !!" imagine how the joy of discovering my overwhelmingly sanguine personality had the longest list of positives was rapidly deflated on turning the page and finding we also have, by far, the most negative features.  in the perusing of a paragraph i plummeted from elation to self condemnatory despair.... sanguine to the extreme or what?   Considering the complexity involved in filling in and decoding some of them, completing the test itself must be an indication of a certain personality type.   the stick in there to the end, no pain no gain sort, noble souls with the Dunkirk Spirit who wouldn't dream of walking away from any task before completion.

After six and a half decades of sharing this planet with humans of various genders, nationalities and lifestyles it seemed time to simplify this categorising system so here's The Jeni Personality Measure.   People are either maximusses or minimusses,  simples !!!
The difference between the two species is apparent in every corner of our lives.   open the freezer door and what do you find?   neatly stacked, tightly lidded, matching tubs each marked with contents, date bought, date frozen, date to be defrosted and, naturally, stacked in order of use = minimus.   random unmarked, loosely tied, plastic bags stuffed into every crook and nanny = maximus.  look in kitchen cupboards and if you find every tin and packet within it's sell by date, in usable quantities, tidily lined up you are dealing with a minimus.   if upon opening the door rusty and dented tins in quantities capable of feeding the entire UK armed forces spill onto your head, you undoubtedly have fallen into the black hole in the universe of a maximus' home.   clothes work on the same principal.   socks paired and outside in, bras and knicks sets matched and in their appropriate drawer, tops and bottoms colour coordinated on hangers = minimus.   socks, bras, knicks resembling a mutant cat's cradle squished in together wherever there's a spare corner with the bottom of the draw popped out due to overfilling, tops and bottoms strewn on chair, floor or cat's bed = maximus.  

Fortunately most families are comprised of a min, max, mix, but where you find a household that's one hundred percent max the result will often resemble the set of Steptoe and Son, eclectic in it's contents and every surface dust free, simply because said dust has nowhere clear of stuff to lodge it's smutty feet so hangs in the air as if in a gravity free environment, a swirling vortex, hovering in hope of the momentary appearance of a landing pad.   a min dominated home in contrast, is a joy to behold for it's clarity and clean lines.   books will be ordered by colour or size.  of course there may not be any on display as the advent of the eBook was a minimus dream made manifest, since they lack all temporal form. 

My sister, who lives at the opposite end of the country, is a fully subscribed minimus.   back in the day, when flying 400 miles was feasible, i would stay in her lovely flat when visiting The Parents. empty surfaces, floors devoid of clutter, uninterrupted space was to me an epiphany.   the advantages were apparent at every turn.  easy to keep clean, no dust traps, an illusion of space, no trip hazards, no hunting under haphazard mountains of jumble to find the remote, it evoked in me a yearning for energy saving simplicity.   after every visit i made a vow to the universe that on returning home i would follow her example, have a major clear out, astonish my children, change my ways......  yeah right !
It would start well, one small section of a room would be transfigured into a little area of zen calm at which i would stand and gaze in rapt admiration at this character transformation encapsulated in a cleared corner.   self congratulation and solo back patting would ensue, smugness would settle around the shoulders like a velvet cloak to be sloughed off on turning and realising that this minimalism had only been achieved by moving the accumulated clutter to a shelf, that was now in danger of snapping in two under the added weight of transposed, treasured possessions too precious to be discarded.   within twenty four hours this maximus would have reconciled herself to the inevitability of admiring her sister from afar and failing to emulate her.

So.... are you a maximus or a minimus? is The Indomitable Fred cat a maxipuss?  at what point does feeling snug and secure among a rich environment turn into pathological hoarding?   is it within our power to change such a deep rooted character complex?  should we need to? put your answers on a postcard and send to me.  hopefully it wont disappear, never to be found again,  into the pile of leaflets, junk mail, garden implements, shoes, gloves and charity bags that festoon the mat at the bottom of the stairs.

Tuesday, 12 September 2017

Calorific Crime Scene

It was a Crime Scene Investigator's Nirvana, Christmas and Hanukkah all rolled into one.   every whorl, loop and arch delineated in a sticky  melange revealing the secret sins of the protagonist.  no alibi, defence or pretext could exonerate the guilty party in the face of such damning fingerprint evidence.   Dr. Black with candlestick in drawing room?   Miss Scarlet with gun in ballroom?   Reverend Mustard with lead pipe in study?   Nooooo.... jeni with tablet in kitchen !!!   

The remnants of every sticky, tacky nibble splodged onto the screen illustrated the true origin of a recent half stone weight gain.   no tummy tightening or bum bracing would survive a half hour interrogation in the light of those pesky prints, each one testament to a momentary weakening of calorific resolve.   of course a gentle rub with a soft cloth and a couple of weeks of judicious eating would sort the problem easily, though sadly not permanently, and nobody would be any the wiser. 
Later, snugged up on the sofa watching the last episode of Orphan Black and relating to it's themes of dereliction and redemption, whilst absent-mindedly erasing all evidence of surreptitious snacking from the screen with a fluffy yellow duster, i found myself lamenting the unsavoury fact that life's indiscretions can't be so easily washed away with a J Cloth  and spray cleaner with all misdeeds forgiven and forgotten like in the movies.  sadly, murky real life leaves tenacious stains that continue to adhere long after the event and no amount of scrubbing can totally erase the heritage of our transgressions.   

I can't be the only one who wakes in the night with heart hammering dismay as scenes from the past play back in full technicolour, refusing to lie down and sleep, reminding me of every ill spoken word, heartless deed and abject failure as a parent, friend, human being.  it seems impossible to silence the voices when their accusations are valid and the fallout of the past is still manifest today. i wasted too many years when younger trying to run from the less honourable episodes of my life, burying them as deep as possible, locking them away but finding no key to keep them quiescent.   not erased, simply hidden.

All that can be done with yesterday's demons is, like my manky tablet, hold them up to the light, expose them, confess them, own them and make a commitment to do better in future.   those murky, cosmic finger marks must be illuminated, without justification, before any absolution can be forthcoming.    in the same way those extra pounds laid down by unwise nibbling wont magically disappear unless i make dietary changes, or the screen of my Acer wont stay shiny without hand washing and regular cleaning, the failures of the past can only be expunged by making better choices in the future and hoping for forgiveness from those affected.  

Tuesday, 22 August 2017

Phantom Flyer

Since childhood i've been a sleep walker, night wanderer, phantom flyer. on several occasions when young i was found crumpled at the bottom of the stairs, bruised and bemused after acting out a dream in which i could soar from the top to the bottom.... hands free.   even back then i had an inkling that walking was always going to be a challenge and perhaps flying would be the simpler option.  it would undoubtedly be more efficient than my usual hop along, loping, limp if only the technique could be perfected.  school was several miles from home and there was no convoy style school run in the 50's, the choice was to walk, walk or walk no matter the weather, distance or ability.   after extensive and repeated surgery on the legs a concession was made so i could use a scooter and park it with the teacher's cars. Later, roller skates became the default mode of movement, wheels might not be as satisfying as wings but a definite improvement on malfunctioning feet.
These days as decrepitude creeps inexorably into senescence a seat on top of the wheels is a much appreciated indulgence.  do you think i could persuade the NHS that the David Pompa designed, Eames wheelchair below is a good use of resources?   have you noticed how utilitarian most disability equipment looks?  it's as though chic shoots out the window as disability slithers in, or is it based on conjecture that only the very elderly need aids and the old don't care about fashion? how many incorrect assumptions can you cram into a Mini?   should function trump style or style out-vie function or are they of equal importance to those of us doomed to use them?  perhaps it's vanity but i want my chair to be an extension of my personality just as it's an extension of my body. in the same way i wouldn't go out with laddered tights and hairy legs i don't want to be seen with an ugly lump of black metal attached to the backside.   
Twelve years ago when i was given my current made to measure jalopy it was the first Northumberland NHS, adult, active user chair to be made in pink.   it had been assumed until then that only children would want a bright colour, adults it was believed, wanted something discrete, sensible, BORING!!! Now some NHS trusts offer purple, orange, lime green and GLITTER, though i haven't yet found anything as elegantly futuristic as the image below.  It seems regressive that 21st century invalidity conveyances look and perform not greatly differently from those of our grandparent's time.  you wouldn't accept a car modelled on an early era,  mass produced Ford so why must i accept an antediluvian means of transport.
Wings are elegant, they speak of liberation, grace, fluidity, a means of escape from debilitating gravity, bestowing the ability to soar beyond these broken bodies some of us are destined to inhabit.  recently on a disability forum someone asked the other users if they were impaired in their dreams.  not one answered yes.  several responded that they had superhuman abilities, all were able to walk and many, like me, could fly.   
These midnight jaunts give a momentary illusion of freedom and the semblance of keeping up with a world in too much of a hurry to wait for the slowcoach wheeling along at the back.   for a night the plodder, the straggler, the also-ran can be ahead of the pack, leading the way across the tundra of life, arms stretched wide, hair flowing  in the slipstream, soaring into a phantasm devoid of disability.  

Friday, 4 August 2017

Go Fred Go

It's a year since i held the little boy below in my arms and said goodbye.  bad tempered, semi feral and averse to touch unto his last breath the vet had to corner him in my lounge to give him a sedative prior to the final shot.  he hissed and spat, tried his utmost to bite our hands before giving up the battle and letting me gently embrace him as the light left his eyes.   For the first, and only, time i was able to groom that amazing coat, fluff up the plume of a tail, tease out the tangles, touch the tummy, bury my face in that pelt without risking an eye.  he was a manky cranky, but he was MY manky cranky and i loved him to bits.

Over his lifetime we lived in three different homes, starting off in the grime of the inner city, moving to the idyll of Lindisfarne and then a supported housing scheme in Hexham where he charmed the socks off the old ladies who forgave his foibles in order to tentatively fondle his ears.   we shared fifteen years of tears and laughter.  he provided a fair amount of the former during his angry, early years when leaving homelessness and aggression behind, and an abundance of the latter once a veneer of civilisation was accommodated and  his inner kitten set free.   there was going to be a furry shaped void in my home, on my bed and in my heart that would need filling.  
With emotions raw and bank balance depleted by vet costs, committing to another fuzzy feline felt premature but i was missing the company, the spirit lifting greeting of a little face snuffling my hair in the morning or running down the stairs tail aloft to challenge anyone entering his domain as though Attila The Hun was at the gates.   it was inevitable that conversations about fostering with Cats Protection would flower into action. a few emails and phone calls later..... enter stage left The Indomitable Fred.   

Starved, sick, scared the plan was he would be with me for a couple of months to gain weight, heal, regrow lost fur and muscle then find a loving family to provide him with a forever home.  he gets rescued, i get a furry and my heart isn't broken burying another one..... simples !!!   if ever you want to make God laugh.... tell Him your plans !!!  a year later The Fred is still warming my feet through the night and greeting me with slobbery, toothless kisses in the morning.   he may look like a bonsai panther but his health issues haven't resolved and he will never be totally well, flu flares attack at the slightest change of routine or diet and he becomes a snotty, sneezy, listless, little old man overnight, making re-homing him a risky prospect.   so it's been decided by those with The Power that he stays with me for the months or years left to him so he can live out his days quietly and stress free.  If reincarnation were proven, and we had a choice as to what our reborn creature could be, i would come back as a cat but i would have to be MY cat.... stuff The Law Of Causality we are talking theoretical here.   
His vet costs are considerable and will be ongoing as medication and regular blood tests are a necessity to keep his poor health under control and if the past year is a guide there will be rushed trips to treat flares and tummy problems, a post malnutrition inevitability.   to help cover the cost Cats Protection have set up a GoFundMe campaign page. (click the link below.)   can you help spread the word for me by sharing on social media or making a donation?  If we raise £1000.00 it should cover him for a year, and it may be his last year.   he will be able to stay with me until the medication ceases to keep his symptoms under control and he becomes the next furry to die in my arms, safe, loved, nurtured as all creatures deserve. 

Wednesday, 19 July 2017

Wandering Star

"Born under a wandering star", "gypsy blood in the veins", "she has itchy feet", these are just some of the maxims that attached themselves, justifiably, to my lifestyle when young. for 5 years i lived on my wits and a thumb hitching around the UK living wherever i landed for a while then moving on.    there is a certain, indefinable  dawn light that sparks within me the need to explore the next place. it's a physical and visceral response that engages all the senses and demands instant gratification.   it was easy to succumb when my universe could fit in a backpack ready for an early morning motorway hike and many times people would wake to find the jeni had vanished during the night.   alien abduction theories abound because thoughtless hippies failed to leave a goodbye note when following their muse.
When marriage and children called time on travelling the lure of the west wind was quenched by regular holidays in little villages and pretty towns.  we would find caravans in farmyards, broken down cottages lit by gas lamps, half derelict chalets with lambs in the garden and giant spiders in the eaves.  my boys drove tractors, teased kittens deep within a barn filled to the roof with hay bales, flew hawks, climbed mountains, pumped water for a week at a caravan with no amenities, descended into the darkness of old mines and were among the first to sail through the magnificent Enniskillin Marble Arch Caves.   an estate car replaced the rucksack but the sense of freedom with the road under the wheels was equally fulfilling and adventures found us at every slip road.
Disability decided to come knocking too soon and i was, unfortunately, at home and receiving visitors that day. the wings were clipped, travelling days done, call of the wild stifled, the eagle had landed and wouldn't be lifting off ever again, and do you know, to my immense surprise, it wasn't so bad.  the walls didn't slowly close in and smother me, the itching didn't turn into incurable MRSA of the toes, the stars continued their circuit uninterrupted, the gypsy blood kept on pumping and i discovered that the most unexplored of territories doesn't exist out there it exists in the unfathomable, unbounded, cosmic depths of the imagination and can be retrieved at will.   while i was busy doing stuff, going places, discovering the new there wasn't time or necessity to train the mind to turn inwards and travel the road of visualisation.   all those years and i hadn't known that those with the most locked in bodies could be the freest in spirit and imagination.   
Through photographs and internet searches i have accompanied my family on holidays around the world without enduring budget airlines, excessive temperatures, towns teeming with tourists.   via YouTube and iplayer there have been vicarious visits to some of the earth's most inaccessible extremes, off limits to the casual tourist. walks in the Siberian permafrost, views of  lava pouring out of Iceland's volcanoes, tears wept over the dying coral of The Great Barrier Reef.  some of the world's most imaginative writers have introduced me to alternate universes, flung me at the speed of light to the stars of unknown solar systems, accompanied me on road and rail journeys to exotic locations. all without leaving the comfort of my home and accessible on a whim at any time of the day or night.   

so.... when you come back from your holidays this year with a sim card full of photos don't feel you have to hide them from your housebound friends and family, you might find they would be delighted to accompany you on your adventures.   add plenty of pics that include familiar faces if you are sharing with the elderly, especially if there are grandchildren in the mix.  print some out so you can leave them with granny and granddad to be shown off to visitors.   oh.... and remember, you might find a smartphone adequate but elderly eyes don't cope so well with a small screen.   borrow a tablet if you don't have one and show granny how to swipe, it's wonderful to see the eyes light up as your memories become theirs.    

Monday, 12 June 2017

Postie People

Four years ago this was the view whenever i left my island home to go shopping. a three mile causeway punctuated by diving birds, sensational sunsets and drifts of sand. i miss the coast, though my family and friends don't miss having to consult tide timetable prior to visiting.   miss the deadline and the best scenario is your car ends up under six foot of salty water.  worst scenario??? it sails off into the sunset heading towards Norway.

On moving inland it was inevitable that the sea would be a big miss. being Bournemouth born and bred  the cry of gulls was a permanent accompaniment throughout my childhood, add in twenty plus years on Tyneside and my veins run with brine.  

Another anticipated miss was coffee shops. there's something satisfying about being wedged into a corner with a large cup of coffee and the newspaper, surreptitiously watching the world and it's residents coming and going, attending to their daily routines, interacting with other humans, unknowingly performing for an audience of one.   The village is made up of one hundred and fifty souls, 330 bird species and 650,000 tourists a year so there was plenty of entertainment for a dedicated voyeur. 

What i didn't see coming was how much i would miss the simple pleasure of posting a letter. because everything in the village is clustered around a tiny main street on a good pain day i could reach the post office, post my letters, buy a Guardian, stop at Pilgrims Coffee Shop for an hour, buy birthday gifts from their craft shop and then it was a matter of steps to my back door.   a universe on my doorstep.   it wasn't until moving that i realised how very satisfying the simple act of launching an epistle into the void could be and how much i would miss it once it became an impossibility.   

So....this little blog post is to thank my unofficial posties (you know who you are).   you lovely humans who deal with my letters, parcels, comics to granddaughters, Love Film Movies, cheques, Postal Votes, birthday gifts and all things Royal  Mail related.   it may seem a small thing but to me it's a huge benevolence.  thank you so very much. xxxx

Saturday, 20 May 2017

PIP ain't What You Say

It ain't what you do it's the way that you do it,
It ain't what you do it's the way that you do it,
It ain't what you do it's the way that you do it,
And that's what gets results.

Remember this song?  Banarama?  oh go on you do, or maybe i'm ageing myself here.  i dare you to click the link and have a little listen.   i DOUBLE dare you to play it just before you want to go to sleep tonight. No?  OK, i wouldn't either.   it's one of those tunes that goes round and round and round the head all night like a herd of monotonously, bleating sheep mocking your sleeplessness. Why did such an inane, piece of anti-music from thirty five years ago insinuate itself into my head you may ask?  well, weirdly, you can blame the DWP's disability benefit PIP for this momentary culture lapse.
Application for Personal Independence Payment, AKA PIP, hinges on a thirty four page questionnaire comprised of multiple choice questions, each one needing a full explanation of how an aspect of disability affects every day life with a justification of the answer by making reference to hospital, physio, occupational therapist, social care, G.P. etc.  the guidelines from Citizens Advice came in at FIFTY SHEETS of A4 paper. can you imagine the time and expense if you have to use a public library for internet and printing?  by spending an hour or more a day it took me three weeks to complete to my satisfaction and i still spent the nights after it had been posted thinking of what had been left out.   How well this opus is crafted has a huge bearing on the success or otherwise of a person's claim as the face to face part of the assessment is built on this foundation.   the assessor doesn't know the relevant questions to ask or the appropriate healthcare person to contact if it's not in the form.
Despite a great gap in schooling whilst a child in hospital leading to an abysmal knowledge of grammar and punctuation, a lifetime reading while others were out playing has given me a reasonable ability to put thoughts down on paper, so though i found the PIP forms daunting i think i was able to give a fair representation of the difficulties disability causes me by constantly singing to myself  "PIP ain't what you say it's the way that you say it, that's what gets results"  with every flourish of the pen.  but what if i had a learning difficulty, or suffered severe anxiety, or had attended a troubled school with a large number of disruptive pupils who made learning a mountain to be scaled?  what of those who don't have a supportive and encouraging friendship circle like mine to keep the spirits high, share the trepidation of losing vital support and open all those brown envelopes that i was afraid to approach when they landed with an ominous, cryptal thunk on the door mat ? (a HUGE thank you to all of you)  these are the people you read about who are finding themselves adrift in a system that is supposed to assess disability but ends up making that life sustaining judgement on intellectual ability.

Me ?? i used a mix of Citizens Advice guide notes and Fightback4justice online. without them it's doubtful the result would have been so positive, high level mobility and high level care for TEN YEARS !!!  the body may be reliant on a wheelchair but the spirit is flying high.  At some point during a long and sociable life it's inevitable that you will come face to face with disability or chronic illness whether personally or via close contact with a friend, neighbour or family member mired in the turmoil of health turned hostile. like a good gender neutral scout it's best to "be prepared" and aware of the pitfalls of trying to apply without backup. the two online groups above are an excellent source of information and for a nominal monthly charge give access to examples of well filled in forms, advice and support. may i suggest that unless you have a reliable crystal ball to reassure you that your future doesn't involve brokenness of mind or body that you add them to your address book, who might need them one day.

Tuesday, 2 May 2017

PIP'd To The Post

A mummy duck was leading her babies up a river when they came to a small weir. judging it low enough for them to climb she led the way up and over.   the first born, larger and stronger than his brethren, followed her without any problems quacking and waggling his superiority.   the next few chicklets followed more slowly and with more difficulty, each taking several tries and an equal number of failures before, with supreme effort, they launched themselves into the upriver flow and mother's  downy embrace.   the last duckling was much smaller and weaker than the others, so when his turn to swim against the tide came he paddled and dabbled,  joggled and bobbled but couldn't make the necessary leap.   mummy mallard quacked encouragement until finally, reluctantly she turned from her floundering, drowning duckling and swam away.   the little fluffball in a total panic raced toward the river bank and scrabbled onto the tow path and RAN past the weir and back into the water, bypassing that impossible barrier entirely, to rejoin his family.

That's pretty much how it is living with a disability, particularly if you live alone.  no matter how much pain, stiffness or weariness accompanies waking each morning the ordinary tasks of daily existence eating, washing, feeding the cat have to be accomplished.   every moment of every day holds fast flowing rivers to cross and weirs to climb without enough feathers to stay afloat, so we have to haul ourselves out of the water and improvise.   

Albert Einstein's  apocryphal saying, "the definition of insanity is doing the same thing over and over again and expecting a different result" was clearly learnt young by our little duckie.   he would have come to a soggy demise in that river if he hadn't stepped out onto unfamiliar territory and used his feet to walk rather than paddle, it was by going against his inbred nature that he was able to survive.

How, you may be asking, does this birdie allegory apply to an overweight, ageing wheelie?  well, unlike our feathery friend i failed the Einstein test during my PIP disability benefits assessment.  instead of leaving the comfort zone of cup half full thinking and following the path of the whinge-fest to gain sympathy and points, i shot myself in the foot repeatedly by being Miss Positivity.   

I started well. recalling research and the brain picking of advocacy groups i remembered the injunction to "consider your worst days." "qualify everything you can do by explaining what you can't." "don't put on a brave face" etc. etc. etc.  eventually, inevitably during a grilling the interrogatee will say anything to make the cross examination end.  i now have an insight into why people confess to crimes they haven't committed.   but after TWO HOURS of questioning i went onto auto pilot, instinctively putting a favourable spin on the many difficulties of inhabiting a broken body.  turning tragedy into comedy, struggle into triumph.  tears into laughter.

Did the assessor, who was a lovely girly, see through the bravado?  i hope so.  if i was given another chance could i maintain the pity me persona?   probably not.     did i talk myself out of too many valuable and essential points?  possibly, only time will tell.   one thing i do know for a certainty, i wouldn't want to live permanently with that helpless, pitiable, personality that i was recommended to portray.   the body may be dependant on wheels but the mind and spirit are free to fly if we choose the path of humour.

Sunday, 9 April 2017


Have you noticed that the concept of "legacy" has been bandied around a lot in the media recently?   whether it's a deceased celebrity, Olympic athlete, deposed politician or a potentially soon to be reposing royal it seems as though the memory of what we achieve in this lifetime is seen as the new immortality in the absence of a belief in a soul. Facebook has even started a Legacy function so somebody of your choosing can organise your page when you become a "friend" in spirit alone.  it's an understandably human trait to find ways of comforting ourselves that we aren't limited to a few decades spent with our feet on the earth, here for a moment and then gone with nothing except memory to mark our passage.   

A few special souls will make it into the history books but even they quickly become anachronistic, a sepia copy of a once vital life force, a fiction by the time of their great grandchildren.  it's no wonder we need the comfort of an afterlife whether through religion, fame, achievement. it gives meaning and motivation to make our time here count, to become the best we possibly can achieve.
I doubt any of us can honestly look back over a long life and have "no regrets".  the playing of Piaf or Sinatra seems more a rewriting of history or a fond illusion than a statement of fact.  a person who perceives their lifetime as sans wrongdoing or contrition is either a saint or a sociopath and since saints are on the Endangered Animal List these days that leaves only one other option.   my memorial song?  The Animals, "I'm just a soul whose intentions are good... Oh Lord please don't let me be misunderstood."   

What legacy would you like to leave behind, how would you like to be remembered?   few of us will have our name on a blue plaque, an entry in Wikipedia, a Foundation dedicated in our honour, most of us will be content with a moderately successful career and a few good friends.   me? i'd like to think the universe would remember me as being a kind soul.   but in all honesty ???  i think the abiding memory of jeni will be of books, cats and coffee !!!

Tuesday, 28 March 2017

While Mortals Sleep

It began in the night, while most sensible mortals slept.   great white flakes floating down witnessed only by owls, the occupants of the occasional police patrol car and other random nocturnal creatures.  by mid afternoon it had turned to relentless, torrential rain hammering a tattoo on the roof, bouncing back high into the air with the force of it's landing.  up in the Pennines the deluge soaked into already sodden ground before racing down into the valley carrying branches from battered trees aloft.  in the early hours it  funnelled into the beck at the back of my flats, an angry, roaring, foaming, flood threatening to overcome the retaining stone wall.
Either the thundering of a thousand locomotives or the floodlights woke me.   there were men in the watercourse, water up to their armpits, wielding long spiked poles they were manically hauling lumps of tree out of the water, pushing the accumulated debris through the protective grating of the slipway, working with a frenzy as more rain dumped in the hills poured down into the valley.  eventually they managed to remove what looked like the bough of a mighty conifer and slowly, imperceptibly, as their exhaustion began to show, the water level began to abate, their movements slowed, the urgency slackened.

Later we'd learn it wasn't only the Water Board who worked through the night to protect our homes, the fire service, police, ambulance, coastguard were all called out to serve.   many homes were flooded that night, businesses ruined, animals trapped in fields.   as i watched those men, the windows around me stayed darkened, the world slept.   when my neighbours woke there was no evidence of the battle waged on their behalf, nobody to bear witness to those soaked, frozen, battered men.
Every night while you and i are tucked up warm and secure brave men and women put their lives on the line for our safety, i wonder how often they hear a word of thanks from those they protect once the drama is over and the world has moved on to its next distraction.   in this age of social media and electronic communication it takes just a moment to express gratitude, to build up and encourage, to say "thank you i haven't forgotten your actions when we needed you".   we seem to have become a nation quick to complain but slow to praise, jumping to condemn forgetting to thank, then wonder why the workforce is halfhearted and demoralised. The Australians have called us "whingeing pommies" since the late 19th century, it seems we have recently decided to live up to the reputation with a vengeance.   why has negativity become our default?     

Life throws various forms of storms our way, some major some minor, but how we choose to react to those called upon to assist us will impact on how willing they will be to step up and cheerfully raise us out of the mire whether we are in ankle or armpit deep.