Tuesday, 31 March 2015

B B Blues Take 3 - the Cost of pain

You may think the above sounds trite, a fortune cookie maxim, a christmas cracker aphorism.  you may be right...... you probably are right.   it doesn't make it any less pertinent though does it?   sometimes those sayings that deserve full on groanability  elicit that response simply because they point us to a Truth we don't want to acknowledge.   Truth is a slippery bugger,  he tries to inveigle his way past our carefully constructed irrationalities in order to make us face reality and, let's face it.........WHO WANTS TO FACE REALITY.......i certainly don't!!

So we create these clever little sayings and paste in a cute looking child or bunny rabbit or fluffy kitten, then overlay that with a soft focus and  a splash of colour, preferably pink, and hey presto......everybody smiles and goes home feeling so much better because they have been understood and had balm rubbed into their wounds.    only, it doesn't work that way does it?   uh oh.......here comes Truth again with his chin tucked into his collar, slyly slipping round the corner of your evasions, poking his nose where it isn't wanted, whispering words of........well, words of truth, and the truth is, sometimes life sucks, pain hurts, desolation is desolate, illness makes you sick, fatigue is exhausting, depression drains you of hope and death is death no matter how cloyingly you dress it up. 

Although i see a place for cheesy cheerfulness, after all existence would be very drab if we allowed Mr Truth to have his way all the time,  i think we need to balance it with a sensitivity to the true needs of others.   there are times when the kindest thing we can do is allow a friend to rant and rave or bawl and bellow.   tears can be healthily valid and to withhold them doesn't make the emotion go away, it simply sinks to the bottom of the psyche waiting to pop up again like some slimy kraken off the Norwegian coast trailing icy cold tendrils of dreadful memory exaggerated with the passing of time and unresolved guilt.  

So, my fellow humans, will you forgive me for the times i've substituted true understanding with a pallid replica in a flopsy bunny costume?   it was never my intent to fob you off with saccharine or candy coated compassion, your friendship is worth much more than that.    with a sensible mix of sentimentality and honesty  i think we can give Truth a run for his money.   what do you think? 

Friday, 27 March 2015

B B Blues take 2 - the social cost

Mother Teresa said  "loneliness and the feeling of being unwanted is the most terrible poverty"

I'm sure those who are truly poverty stricken and destitute would disagree with the sentiment, i mean..... you can't eat your friends can you?   But there is a truth in there that is worth a second look, as i've always believed that without my family and my friends i would be greatly diminished.   It's in their love and esteem that my universe has value and in the love and esteem i offer them i, hopefully, become a better human.

Loneliness has been described as a 21st century plague with the irony being that social media means we can talk 24/7 without ever seeing or touching another person.   now, i love my phone and the internet is my window on the world but an hour texting or emailing lacks the warmth and empathy of an hour sharing a cuppa with a friend, along with their laughter or tears or memories.  social media can't greet with a hug or pass a tissue to wipe reddened eyes,  it can't linger on the sofa over a shared photo or slip an arm round slumped shoulders.
The elderly face a great cost in losing social contact.    my mother used to say how hard it was to count the missing cards at Christmas as her contemporaries, one by one, succumbed to illness and frailty.   we tend to make friendships within our own generation so as we reach old age our friends and siblings are facing their own declining health.  we all gain from communities of mixed ages as well as mixed ability.   the old have company and can benefit from being challenged to stay young in mind and heart if not in body,  and the young, if they are willing to listen, can learn about a life so different from theirs it might as well be a foreign land.

How do the disabled make new friends and keep old ones?  it's not easy, believe me!  finding the energy is just the beginning of what can feel like a major trek on the path to sociability.   it can feel oh so easy to dive under the duvet when offered a "drive out to do something" !!!    pain and fatigue can make us seem aloof and absent, or we do the old "boom and bust" dance of being full of life and fun around people then crashing for several days afterwards, closing the curtains to lick the wounds of kindness.   We long for your company and feel bereft without it, at the same time we feel failures at friendship when we have to spoil the party by going home early to nurse our hurt and exhaustion.

We need your help in this balancing, budgeting act.   be patient with us as we fumble our way through this alien land that is disability.   tell us you don't mind journeying across town for a half hour visit.   that, of course you'll drop us at a destination then go park the car, even if it is tipping down with rain.   bring your friends if you think we'll connect so we have a chance to meet new people.   pretend to be interested even though we have so little to talk about as we see so little of the world.  above all........bring cake as it sweetens every relationship.


Monday, 23 March 2015

Got the Budget Blues: Take One

You must know by now that the budget has been and gone and, maybe, you have absorbed the parts that impact your life, positively and negatively......maybe???   

Have you noticed that depending on which newspaper you read or TV channel you watch there appear to be several different versions reported?   but only one apparent background in The House of Commons?

I've always held a sneaky suspicion that the government we see on TV is actually a Photoshop  mash-up of our beloved politicians their faces, like those old end of pier seaside "Punch & Judy" cutouts, added to old footage.   what looked like budget 2015 had the bodies of budget 2014, 2013, 2012.   last year's bodies spouting this year's buzz words.

                                    add face where you see fit. 

What you DIDN'T see was that mr cameron's big toe was stuck in the tap of his hot tub as he slowly submerged.   those bubbles aren't from a bottle of shower gel but a nice Moet, and that isn't a massage Sam-Cam is delivering it's the kill shot.   no wonder he looked pained.

Mr osborne wasn't standing in front of the backbenches at all, but at his local hunt.   yes....those baying, crowing Tories you thought you saw were actually rabid beagles !!!    and they were getting ready to tear you apart slowly, one £ at a time while beating you with their order papers and insisting you sign an affidavit to the effect that  "we are all in this together".

What of mr duncan-smith?  where was his body while his face sat with it's habitual  expression of disbelief at the frailness of humanity?   i can tell you where he wasn't?   he wasn't at our food bank witnessing the shame of a recently sanctioned mother of three.   she couldn't attend the job centre as she had an interview for a permanent job that clashed with a training day.   she told them......they didn't believe her.  she didn't get the job as 50 turned up for one position.   she sent in proof from the company that held the interviews but it will take several weeks to verify and re-instate her benefits.  till then all praise to the church who made it possible for her children to have a hot meal for a few days.   no wonder mr d-s looked uncomfortable.

Did you know the disabled live with a permanent budget?   more like a profit and loss sheet really.   it's not only financial either.   every moment of every day is spent weighing up the cost of the next moment, constantly balancing whether the reward is greater than the price or at least equal.  it's an exhausting existence but also incredibly satisfying when you get it right.

Would it be ok with you if i spent the next few posts allowing my mind to meander around that theme?   next time let's look at the social profit and loss sheet, we'll get the Budget Blues Take two

Monday, 16 March 2015

Happy Holidays - Open Britain

It's that lovely time of year again when daffs and crocus are daring to raise their heads above the parapet and the birds are starting their flirt-song.   have you noticed how the evenings are lighter longer and there's some warmth in the sun if you find a sheltered spot?    it always  reminds of a poem my mother used to say on the first sunny day of spring

spring is sprung, the grass is riz,
i wonder where dem birdies iz,
the little bird is on the wing,
but that's absurd,
the wing is on the bird.

Hey i didn't claim she was a poet!!!  or that she hadn't plagiarised it.

It's also the time that friends start talking about their unmentionables, the dirty word, the shhhhh.......whisper it.........holidays.

When my children were young we would simply find a cat sitter, pack up the car with bedding  and food and toys, pick up several hours worth of comics and cheesy pop cassettes and head off to a far flung farmyard or half derelict cottage.
There was the caravan with gas lamps and a water pump in Scotland where they played with kittens in the barn high up on the straw and saw a calf born and rode on tractors.   the cottage that boasted as it's only form of heat a temperamental wood burning range that they fought over in the mornings to clean and relight.   the fortnight where it poured non-stop day and night and we played a game of Risk long enough to warrant an entry into the Guinness Book of Records.  afternoons spent in coffee shops, down mines, up mountains, on steam trains, at country shows, in museums.

Warm memories of a time before my body's breakdown became too overwhelming.

Planning a holiday when disabled isn't quite so easy.   will there be space in my room for Bassett the Wheelchair?   is there a lift?   is there parking near the entrance?   if not is the car park gravel or smooth?   can i have meals in my room if i'm unwell?   do the toilets have an emergency cord?   is there a choice of a walk-in shower instead of a bath?   will there be room for the wheelchair in the dining room/lounge/bar?   and that's just the hotel/guest house.    don't get me started on visitor attractions!!!!

Finding this info meant days of trawling through individual companies on the web or expensive phone calls.    it was easier to stay home.

Not any more.   may i introduce you to ... Tourism For All


This wonderful site should make holidaying with any kind of disability a possibility for those who can afford to get away.    with a few clicks of a mouse their easy to use search function gives options of location, hotels, b&b, self catering, places to go, eat out, shopping.    all different types and ranges of limitations are covered from visual to hearing to mobility.   

Pass on this link to your family and friends.   wouldn't it give you a buzz to know you gave somebody a hard earned break?

Happy holidays to you all

Friday, 13 March 2015

Fur Feathers Scales or Skin

A very dear friend, who shares half a name with the handsome boy whose portrait graces the  top of this blog, pointed out that though he has adorned several previous posts he hasn't been properly introduced, so..................please meet  Mister Cat 

AKA The Furry Fiend 

AKA Fuzzball 

AKA Little Podge

AKA Manic Manky Moggie,    ok, i just made that one up,  sorry, but he is.....manic,   and he was.....manky.   

In his own catty way he is as disabled emotionally as his owner is physically, and copes with that in much the same way, by being contrary,  spiky, bloody minded, and not a little selfish.   he experienced abandonment, abuse and ill health when young as i did, and when he encountered love and acceptance struck out with mindless rage and suffocating neediness, as  did i, pushing away the very thing so desperately wanted.

Damaged children become damaged adults whether they have fur, feathers, scales or skin.   

But we both learned that the damage of past pain can be turned into  something good and used to benefit others.   it doesn't have to define us.


Just like the pup in the article above (click to read) my, no longer manky, puss cat visits the elderly who are unable to get out, sits with a look of utter disbelief on his face while fumbly old hands rub his ears, gazes into their half blind eyes,  purrs into their deaf ears, controls his ill humour for the duration.  the comforted comforting.   the accepted accepting.   the loved loving.

Monday, 9 March 2015

Live Long and Prosper

my science fiction addiction started in high school.   i would hide in the school library during breaks to avoid the interminable taunts that children throw at those they perceive as "different".    school  libraries weren't well endowed then so it didn't take long to reach the "S" for sci-fi category, a location i  ordinarily would not have considered, and found a fascinating series of teen novels.    i don't remember what they were titled or anything about the story line except there was a Professor Mary  who had a conspicuous mole on her cheek.   interesting that it was a character with a different "difference" who stayed with me.   i would daydream through double maths that i was the Professor on a planet far from mine and .......I  WASN'T COMING BACK!!!

A few years later a very wise lady passed me the C S Lewis trilogy Out of the Silent Planet and introduced me to sci-fi as literature.  from those beginnings a love of other worlds began.   true, i tend toward the dystopia of Blade Runner and Firefly more than the soft sci-fi of Star Trek but it still comes from wanting to run to a place a long way away.

If ever an actor was defined by a role it must have been the late Leonard Nimoy AKA,  Star Trek's Mr Spock.   no matter what role he subsequently played the shadowy spirit of Spock would always be leaning over his shoulder.    We all know Nimoy wasn't really Spock, that he could leave the costume at the door when he went home at night and be a human not a Vulcan.  

For the disabled it's too easy to allow our diagnosis to define us, to BECOME our ailment.   how often do you hear "i'm spina bifida",   "he's coeliac",   "she's Down's Syndrome" ?    

                            N O   NO   NO   NOOOO   !!!!!!

I HAVE spina bifida,  he HAS coeliac disease,   she HAS Down's Syndrome.

Semantics ??? perhaps.   but  i'd rather be a pedant than an illness !

We, of broken bodies, can't leave our costume behind, it's pinned to our shoulders and we drag it around behind us 24/7.   Please at least have the grace to allow us to be defined by our humanity not our disease.

Friday, 6 March 2015

A Good Life

Idly wandering around on social media recently i heard a voice from my dim and distant past pipe up "is that really jeni? do you remember me?"

I couldn't ever forget as he, yes he, and i were....close....very close.... for a while.... quite a long while actually.   

We were young and thought we would live forever and the sun would always shine and nothing would change.....he's now sans hair and a pompous boffin at a university....  i'm now sans mobility and an opinionated blogger in supported housing.    life does change and the sun doesn't always shine and we don't live forever.   

Over the next few days we had a couple of phone calls and decided nostalgia aint wot it used to be and went our separate ways, but something he said stuck with me.   "you laugh a lot don't you?" he said, "how can you laugh so much when your life is so limited and you hurt all the time?"   i think i said something fatuous about silver linings and there always being someone worse off and laughing instead of crying, all the usual cliches, but it did get me thinking because sometimes there's a sliver of truth in cliches.

If i were asked the question now, having had time to mull and ponder i'd say it's a decision.   moment by moment we have a choice to focus on the good or bad the universe  throws at us.   

there's nothing we can do to make that sun keep shining, 

there's no way he could make his hair keep growing, 

no doctor could stop my spine deteriorating, 

no life can avoid  pain and failure and rejection and ageing and dying, 


we can do something about the way we respond 

and we can learn to smile through the tears 

it's the only one i'll ever have so no matter what this day holds i will dredge a laugh from the depths of my soul and say

I T S   A   G O O D   L I F E


Tuesday, 3 March 2015

The Big Society made manifest in a small community

Have you noticed we aren't hearing anything from government recently about the Big Society concept they were  heavily pushing?   it seems that the gentleman responsible for promoting it very quickly discovered he didn't have the necessary time for this "good work" while holding down a full time job.                                 They didn't think about that did they?
If, as is being suggested, retirement is moved to 70 or 75, and at the other end of the spectrum of life the unemployed have to do community work in exchange for benefits.  If both partners in a relationship need to work in order to afford a home while simultaneously raising children and helping elderly parents.   who is going to enact the Big Society?

Having at various times lived in the inner city, a huge private housing estate, a university campus, a supported housing complex and my beloved island of 150 souls,  it was on Lindisfarne that i saw Big Society made manifest.

Maybe it has something to do with a community made up of several generations within a  family that can be traced back for centuries, or the camaraderie of living up close and personal with  unpredictable nature via the tides.   maybe there was an element of  "them and us", tourists and dwellers.   or maybe they were just really nice humans.

It was lovely to see hot meals being taken to housebound family.   kids going home from school via granny, auntie, uncle, sister, brother, friend.   young people breaking their teeth on the world of work in local businesses and coffee shops.   neighbours looking out for each other, carol singing together, sitting out frequent power cuts in the pub together, laughing at weddings, crying at funerals, chatting in the street.   sounds idyllic doesn't it?  of course there was conflict and argument, but nobody was overlooked and nobody HAD to be alone.   

I'm sure for some it felt suffocating or intrusive, but it was very attractive to watch and there are definite lessons to be learned, if only that "big" society seems to work better in "small" communities.