Monday, 23 December 2013

For Mum who would have been 80 years old today

Mum on a break Nairobi 1957

My mum would have been 80 years old today. I wanted to try not to feel sad but to celebrate the fact that I was lucky enough to know her.

It’s impossible to convey how lovely she was or to try and encapsulate her life into a blog but I wanted to mark today by explaining what she meant to me.

She was born into a working class family in Shropshire in 1933. Because her mother was a nurse in Wolverhampton she had the luxury of having her 3rd child in a hospital, rather than at home.

Setting a pattern, which followed her throughout her life mum, Elizabeth, was a very quiet, undemanding baby. She’d be put out in pram for fresh air and sunshine and because she was so quiet she was sometimes forgotten.

Grandma Mollie 1930

Her mum, Mollie was loving, funny, fiercely intelligent and a very hardworking nurse and mum was as devoted to her mother, as I was to mine.

Mum trained to be a nurse too and after qualifying she travelled by ship to Africa where she worked in The African, Asian and European Hospitals. 

Leaving Shropshire in the early fifties as a single woman to travel to Africa was an extraordinary event in those days. Her parents were terrified for their only daughter, as she "may as well have announced that she was going to the moon", but they knew that once mum made up her mind, her quiet determination made further discussion redundant.

Mum's parents on their way to a wedding 1957

Her mum took her to the station for the train to London and lingered until mum’s train disappeared before leaving the platform. That was the last time they saw each other. A few years later when mum was still only in her early twenties, now married and pregnant with my sister, Mollie suffered a brain hemorrhage and died. 

Mum worked throughout her pregnancies as her husband was regularly unfortunately out of work. She would often do double shifts even whilst pregnant in the polio unit of the hospital.

Nairobi 1958

My brother and sister were born in Kenya where they all lived for 8 years then my parents travelled back to her husband’s home country of Ireland where I was born.

My sister was chronically ill with Asthma to a very severe degree throughout her childhood and into her early twenties and I knew how to phone an ambulance from a very young age.

My brother was usually the picture of health. He was over 6 feet tall, played rugby and cricket and in the summer tanned like a surfer. The symptoms of his terminal heart condition were initially missed. Mum however remained concerned and through her persistence eventually he was diagnosed.

On Christmas day 1978, my beautiful brother, who was going to become a classical guitarist, died. It was 4am and I was at home sleeping and mum was sitting with him. His breathing was becoming more difficult as his lungs were filling with blood. 

He opened his eyes and asked her if he could be 'greedy' and have some more iced water.

As she walked back with the jug of iced water, to the curtains surrounding his bed, she heard the rasping rattle as the breath left his body.

She opened the curtains and the nurse who arrived beside her began to cry.

Michael was 17 years old.

Mum was able to have two weeks off. Then went back to work as a health visitor. Part of her job was visiting mums at home with new babies. I often wonder how hard this must have been for her having just lost her own child. She never complained.

How she found the strength to support me and my sister through the weeks and months that followed, alone, I’ll never know.  But she did.

She was simply remarkable, made of gentle granite with no bitterness or cruelty, or anger.

She got me through and at 19 I went to drama school in London and moved back home in 1992. I started going out with Phil who I’d known for years and after 6 weeks discovered I was pregnant with Lizzy.

Mum took it completely in her stride. She didn’t judge anyone and firmly believed that a family is what you find behind a front door. Which made her a great Health Visitor.  Phil and I decided to move in together to see how it all worked out and it did. Mum gave me away at our wedding with Lizzy as a bridesmaid.

Mum carried on working until the age of 65 and at 68 was diagnosed with Alzheimer’s disease.

Lizzy and Emily 2000

She had been so wonderful with her grandchildren. She played with them patiently, baking cakes and knitting and doing everything beautifully as ever.

Gentle, kind and loving until the end.

She had Alzheimer’s for a decade and I was able to repay some of my huge debt of love and gratitude in this time. It wasn’t enough it would never have been enough

She was typically stoic and funny after the diagnosis came she said “They say I have Alzheimer’s Nicky, but I don’t have to believe them if I don’t want to, do I?”.

After 5 years of caring for her at home for the last two years with the help of a home care provider, her condition deteriorated so I found her a nursing home.

I wanted to bring her to live with us but this was impossible. Emily's learning disability meant that she couldn't cope with the change in her grandma that Alzheimer's brings. Both conditions require very high levels of care. 

It was in this nursing home on the 5th of December 2011 that she died. She’d had a stroke and aspirated some blood from biting her tongue. This led to pneumonia.

Years before she’d talked of the gentle end that pneumonia brings to the elderly. From her nursing days she called it “The old man’s friend”

She’d been resolute even with advanced Alzheimer’s that she would have the flu jab but not the one that combined with pneumonia. She’d fix me with her beautiful blue eyes and say “No thank you”

Mum in her garden 1993

As the end stage advanced during her final year she lost almost all of her speech. Except one word.

The hallucinations, which had understandably been so frightening to her earlier in her condition, transformed in the end into a comfort, she would look past me and smiling in recognition, she’d say my brother’s name.

I’d been with her everyday for the ten days that she lived after the stroke. I’d gone home for a shower and something to eat and was leaving when they phoned and told me she’d died.

I had kissed her before I left and repeated the words, which after a decade had become a mantra. “I love you mum, you were the best mum in the world,” 

I also added the words which confirmed her belief in God and offered as comfort to her from my atheism. “You’ve worked so hard for so long. You’ve done enough now, go and be with Michael. He’s waiting for you.”

Elizabeth, my mum, my friend, and my strength, taught me how to love and also taught me that love does not end when life does.

It stays with you forever.

Me as a blackbird Chester 1971

Saturday, 21 December 2013

Twelve days of Twitter

Twitter can be beautiful and terrible. After my fifth year on here and because it's that time of year here's my 12 days of Twitter.

On any given month my timeline showed to me:

Twelve “Nazi” brandings

Eleven misunderstandings

Ten idiots bragging

Nine haters hurting

Eight freelancers working

Seven hampsters twerking

Six bullies gloating

Five celebs promoting

Four babies laughing

Three kittens farting

Two pedants carping


Because you've been so good this year here's a link to enjoy. Happy Christmas love Nik xxx

Friday, 29 November 2013

Carers Rights Day 2013

It’s carers rights day today and you can find out all about it here.

I’ve been an unpaid carer for twenty years and finding out about your rights, entitlements and welfare benefits it’s a crucial initiative for a group of people on whom society depends. That may seem a bold assertion but a couple of years ago I did a calculator to assess the monetary value of the caring I did and discovered I was worth £186,000 per annum to the economy.

That is the saving I’ve made the country in one year when you multiply that by the 20 years I’ve been caring that’s possibly slightly shy of a Bank chief’s pension or their annual bonus… I’m not sure. When you multiply that by the millions of carers in this country that’s a pretty big contribution.

I used to get carers allowance every month. It was the exorbitant figure of £172 per month. Given the hours I did and the physical and mental exertion this requires, given also that it negates much hope of future employment due to the impact on my CV (unless I want to be a paid carer) then just over £60 per week is a nice gesture but not really commensurate with the work carers do.

So having detailed the link for carers to access, I wanted to use the rest of this space to highlight something else.

Carers most constant companion is guilt.

Mum in 1999. She died from Alzheimer's disease in 2011

You never think you’re doing enough because you can’t ever do enough.  You neglect yourself your friends and your extended family because of exhaustion, diminishing frames of reference/shared interests and because of time.

Anytime you spend away from your caring duties is spent fretting about being away from your caring duties or thinking of ways to be a better carer, or remembering that thing you were supposed to do as part of your caring duties. So it’s a pursuit of diminishing returns.

I’m sure there are carers who have huge friendship groups.

The majority of carers I speak to have experienced things differently.

People are still afraid of difference and this difference extends to carers because we live our lives to the beat of a different drum.

It’s one that revolves around medications, doctor’s appointments and meetings.

When you attend these meetings you are usually the only person at the table who isn’t paid to be there and it’s daunting when confronted by professionals who know everything. The best professionals know how little they actually know and so tend to listen far more than they talk. Cherish them. As carers though you have 24 hour training and practical experience to offer and this is equally as crucial as theory.

The other aspect in caring is the reason you are doing this. In every family there are those who do and those who see you doing and breathe a sigh of relief.

The same people often care for their elderly parents their disabled children and their sick in laws. Funny that isn’t it.

Perhaps this carers day might send a message out to siblings of carers that in fact pulling your finger out and pitching in might lessen the need for you to remark on how tired your sister or brother is looking. Or how quickly they seem to lose their temper with you “these days”, or indeed where you think they may be “going wrong” generally…Just a thought, Perhaps if you were a little less self involved you could help rather than criticise those who do care.

Making time for yourself when you’re a carer is at the bottom of a hugely long list of other things that you’re aware you need to get around to “at some point”

Mum with Lizzy 1994 

Like sleeping, eating and addressing those symptoms, which are becoming harder to ignore; making any time for yourself is a concept, which makes you laugh a hollow laugh. There aren’t enough hours in the day as it is.  I had to fit in going for an x-ray for broken bones from challenging behaviours around other people’s availability to care for the girls. That’s the reality.

But it really is crucial because you are the foundation of the life you inhabit. It is true that if you fall apart, every thing falls down and it’s more likely that you will fall apart, if you don’t take any breaks. It’s not just your mental health but also the cumulative effect of sheer exhaustion.

Although we are conditioned to believe by society and this greedy government that caring at home is the only way, it’s much cheaper than investing in good care provision, sometimes this becomes impossible.

Finding a good care home or residential school is vital.  Do as much research as you can, but also know that nothing is 100%. This is equally true of the horror stories you will read about things going wrong. This will compound the enormous grief and guilt you are already experiencing but remember in almost every case it was a dedicated carer or nurse who blew the whistle.

For every abusive paid carer there are so many more who are kind and gentle loving and dedicated. As I’ve being saying for years, Harold Shipman is not every GP and he does not define or describe the NHS. This is also true of social care and all those who work within it.

Mostly though for Carers Rights Day, I wanted to send my love. Not sure how many people will read this but if you’re reading this and any of it has chimed with how you’re feeling please know that you’re not alone.

The pressures of our lives mean that we are at a higher than national average rate of divorce and family breakdown

Like many carers I reached my lowest point a few years ago. As Phil came into the house I ran out, jumped into my car and drove down to the river. I couldn’t cope anymore I was broken. I was so sure that I didn’t want to live.  So sure that I wasn’t doing anything right.

I just wanted everything to stop.  I sat there for the longest time and gradually remembered the reason why this wasn’t going to be an option for me, why there was a reason to keep going, to endure and not to give in. Three reasons at that time, Mum, Lizzy and Emily.

I thought about those carers, who are repeatedly let down by the system and to add insult to injury judged by society when they ask for help, or realise the needs of the person they love are too great for one person to manage. I still think about them everyday.

It made me determined to keep shouting, and to keep bloody fighting. 

So I will, just like the millions of carers before me and the many millions to come. 

Happy carers rights day. xx

Lizzy and Emily 2001

Monday, 25 November 2013

The truth is the easiest thing to remember.

Dear Ricky,

Having seen a series of tweets you wrote last night I wanted to respond. 140 characters is a little restrictive for what I wanted to say so I've blogged it. 

I'm glad that you tweet repeatedly about atheism.

Some people seem to forget that not everyone who follows you lives within a society which allows for freedom of expression and speech; that there are those who live within far more oppressive and restrictive societies than our own. 

Others forget that whilst they may have identified and embraced their own lack of belief, some are still too nervous of the consequences to voice this due to external factors.

The ties that bind many to a faith they have been raised within, are invisible but strong. No one wants to hurt or disappoint the people we love.  To step outside the accepted norms of familial expectation is daunting at times and none more so than by rejecting religion as a staple of life.

Your tweets on this subject offer an alternate viewpoint. Anyone who feels you force your views upon them is misunderstanding the basic premise of social networks. More significantly they fail to recognise that the status quo of religious doctrine, functions more comfortably for them, by maintaing a 'message monopoly' on public platforms and potentially finds itself shaken by being questioned.

On Twitter I follow and am followed by people of faith, who enjoy being challenged respectfully.  They understand that the discussion and the exchange of ideas is paramount to all crucial debate and recognise that questioning of an institution, or the leadership of faith groups, is not an assault on the people who comprise its membership.  

Those who seemingly become the most enraged by your tweets, are those who speak of offence, which they say you inflict on them or others they claim to speak for.  If any personal belief is weakened by questions oft repeated, or a simple statement of atheism, then perhaps they need to work harder on assimilating more detailed answers than  “Because we say so”.

My point is that in speaking about the things that matter to you, you allow others a chance to know that there is another choice beyond an unquestioning acceptance of  doctrine. Also no individual or group should believe they are above challenge, question or concern. 

There will always be many who attack, who belittle, denigrate and despise you for this, but I’m sure you know, they are not the people who count. The people who count are the ones who allow themselves a doubt, which becomes a conviction that a freedom from oppression, whether that is in terms of sexuality, or reproductive choice, gender equality, equal marriage or in terms of a quiet request for rationale in the face of rhetoric; begins with the freedom to speak your own truth.

I feel your tweets offer this.

Ultimately to me and to many others, truth is preferable because it’s the easiest thing to remember.

I doubt you would consider doing anything other than this anyway.

All best, Nik

Tuesday, 5 November 2013

Living with it

So Emmy is doing fantastically well a year into moving to her residential school.

We don't live in fear every day and I don't make regular trips to A&E anymore.

Most importantly our girl is thriving. She's incredibly busy. Too busy for a visit last night as she was off to her favourite place. A disco run especially for learning disabled young adults and as she has something of a foot for dancing she stayed on the dance-floor from beginning to end.

Her sixteenth birthday party had guests, which was different to last year which featured Emily alone on a bouncy castle. probably one of the saddest things I've ever seen and as a parent of two disabled children, that's saying something. There were no guests because no one wanted to come. Friends slip away when your life diversifies.

She had an activity holiday and goes horse riding and began a performing Arts course in September. She won an achievement award and she has real friends.

She's happy busy and doing well, but after a move into a unit for more able young people, she saw that one of the residents goes home every weekend and this is where we have hit a problem.

Emily wants to come home to stay and she can't. She can't for two reasons. One - the violence is too extreme and too unpredictable and two -She won't want to go back and this is too cruel to expect her to endure.

Sending Emmy away at 15 was one of the hardest things I've ever had to do and I've had to do a lot of difficult things as a carer for 20 years.

She visits a lot and we visit her and it's always a delight but an overnight is too risky at the moment for her and for us.

So tonight again, I'm sad. The sort of sad that gnaws at your bones and rips at your soul as I struggle between the intellectual decision and the desperate need to dry her tears and just bring her home.

I started this blog as a cathartic space and it's proved it's use once again.


I sent my blog out earlier and the beauty of Twitter proved itself again with words of comfort. To Jonathan and Rick by DM to Kaliya and LadyLoki, Ryan, Emma  Bernadette, Kristina, and Polly, by tweet thank you all so much.

Rosemary emailed and with her permission I'm adding her words to this blog because she summed up so well, so many things, with kindness and a beautiful flair with words which is so apparent; but which she she doesn't know she has:

Hi Nicky,

I know how difficult it is to let go, even when it is best for all concerned. Unless been through it no one else will understand the heartache. They don't understand how the violence can be as quick as the flick of a switch, plus the fallout from it that can go on for hours, sometimes days.

I hope as Emmy becomes settled, you can smile more and more. Again looking to the future, not many will understand our worries.

I don't have your flair with words but if you ever want to offload I have broad shoulders and a good set of ears.


x x

Monday, 21 October 2013

Some funny in a list.

So the Telegraph wrote a "Top ten comedians to follow on Twitter thing" they do. Agreed with some thought they'd missed some others

Here's some of mine. They're not all professional comedians but they're all bloody funny.

Effectively what I'm saying is, I think I'm 'better than the Telegraph'.....

David Baddiel:
He writes "a bit" and campaigns against the use of the Y word in football. He get's a lot of crap for that.

Christina Martin:
One woman bundle of funny and activist for learning disabled people, like her brother.

Ricky Gervais:
Apart from all the stuff he does also fierce fighter for animal rights. "May" contain traces of atheism.

Jo Caulfield:
Funny, kind and genuinely interested in other people. Rare that.

kerihw :
Does this-


Does this-

and together they do this

Sarah Silverman:
Because of a lot of stuff.

Tokyo Sexwhale:
Beyond annoyingly funny like this


Stephjl :
Has consented to court him and is funny like this

Thursday, 17 October 2013


I'm using this blog today for the purpose that I created it. A cathartic space to document how I'm feeling and to dump stuff that may, or may not prove useful to other people. I do apologise for rambling and divergence.

For the last twenty years of caring for other people, in ways that I've talked about and ways that I haven't disclosed, I have experienced crying days.

Usually two or three days every couple of months which I've viewed as a pressure cooker valve for my mental health.

In short I've felt sad and let myself be sad and his cycle has resolved and I've moved on.

Sadness is a crucial emotion for life but we are sometimes quick to replace it with cod diagnoses and the fear fuelled responses from others around us.

Often times sadness is indistinguishable from depression and must never be ignored or belittled but equally sadness has a value which mustn't be negated.

In my life there have been things over which I've had no control. Events which have needed resolve and energy and adrenaline has made my dealing with these events possible but this has necessitated the shelving of my own sadness as it got in the way of what I needed to do. When you are a carer there isn't any additional space for you to fall apart.

This is how I know that what I was experiencing wasn't depression. Unlike those who cruelly stigmatise mental illness, I know that you can't "choose" depression, it chooses you. Aside from a panic disorder which can manifest, and the side effects of stress I haven't experienced depression but it can happen to any one of us at any time and we need to have a huge reservoir of empathy and compassion for those who live with it.

There is at play a harsh and demeaning attitude to "faux " conditions which dovetails with a hardening of hearts and an overwhelming cynicism which is a historical imperative seen in times of austerity. I feel we need to fight this everyday.

Perhaps by not giving those people like Katie Hopkins, airtime. But that may be a big ask in the Punch and Judy arena which passes for debate these days.

To stem the times of acute sadness deteriorating into depression I've visited the Dr regularly over the years and seen a counsellor and would never fight medication as an option, if I needed to take it. Exercise is my friend in the worst of times and the benefits of regular exercise are equal to those of a low dose anti-depressant.

This week I'm sad again. Very sad. I'm wading through metaphorical treacle, and wonder again if the cumulative impact of the sadness I postponed, is once again backing up.

The league table of perspective we all live by determines that my sadness is as nothing to the suffering detailed in African migrants drowning in the Mediterranean in desperate pursuit of a life away from horror. As nothing to the suffering of 30,000,000 enslaved people of the new millennium and as nothing to those people, beaten and broken by abusive partners everyday. The list of genuine suffering is long. As long as the queues for the foodbanks, which we are seeing the Red Cross championing in the UK.

Britain isn't looking very great at the moment.

I have the capacity to understand this and recognise my luck in life too and I'm ashamed that I feel sadness at all. No one is less tolerant of my mood than I am.

But irrespective of my own frustration, it's stalking me everyday this week, like an unforgiving enemy and it's capacity to be diminished through reasoned explanation and comparison of suffering, is equally absent.

I suspect it's part of a process of moving from being a carer full time for 3 people which involves letting go and falling down and moving on.

It involves grief, loss and fear of the unknown and like stepping off a fast moving carousel, re-acclimatising myself to the stillness and working out how on earth I can be useful, or productive is tricky.

It's a work in progress as ever.

Tuesday, 24 September 2013

About Time

On Sunday night we went to see About Time.  When the film had finished, it took me an hour to stop crying.

I eventually stopped and later my 19 year old daughter Lizzy, drifted into the kitchen and asked what the film was like. When I started telling her, I started crying again. She put her arms around me, like my Mum used to and I had the clearest memory of being a child again.

The film is just so beautiful. 

Mark Kermode used the word Capraesque in his review and he’s right. He used it in its purest form and About Time delivers this to its fullest extent. It carries the humour and the truth and the agony of love, that only someone who has truly loved and truly been loved, could have made.

With a weather eye to the spoiler horizon, I can detail only that the film deals with love. Romantic love forming one part and parental love the other. As with all good parental influence, that stoic foundation of tutor, mentor and guide underpins the piece, quietly at first and only when needed.

Then it’s gently revealed through the life of the film's protagonist, Tim.

This is a stellar performance by Domhnall Gleeson, deftly delivering that familiar duality of fragility and strength, which inhabits many of us as we jump into the deep end of adulthood.
We are all a little afraid of yet desperate to, travel through the story of our lives.

Tim at the age of 21 learns the secret of the men in his family, from his father, a heart breaking, understated yet perfectly detailed, performance from Bill Nighy. They have the capacity to return to certain times in their lives and revisit events and choices.

Tim embarks on a journey of discovery with only one clear objective for the deployment of his superpower, getting a girlfriend.  It’s unlikely that many 21 year olds, would have used it for anything else.

As Tim’s life unfolds his growing maturity imbues him with better uses of his gift.  
He finds ‘the’ girl, makes a home and family of his own, and this is where the truth of parental love is raised so perfectly by Richard Curtis. 
He delivers, with a light yet embracing touch, the universal truth that it is only when we become parents ourselves that we fully appreciate the love we were nurtured by. If we’re lucky.

As the parental hand that held our own lets go, so then can we hold our own child’s hand; to protect, to guide and to show that we are by their side.

As with all Richard Curtis productions the women characters are three dimensional, truthful, funny and real.

It is as ever, so delightful to see a film-maker paint the women featured from the palette of equality not misogyny. There are no women as sexual props, just women as real people. Mary, Mum-Mary and Tim’s sister, Kit Kat are characters who stay with you for their words and actions.  Lindsay Duncan, Rachel McAdams and Lydia Wilson, give superb, considered and nuanced performances.

Tom Hollander as the acidly angry writer Harry, is breathtaking as always as is the gently vague and irrepressibly optimistic, Uncle D played by Richard Cordery.

Cameos from the mighty Richard E Grant and the superb and much missed Richard Griffiths, people a Richard Curtis film as ever, with the believable and delightful characters of all of our lives.

It also took me back in time

Mum holding Lizzy in 1994

In 2006 my Mum was in the middle stages of Alzheimer’s and had drifted gently away from me for the previous five years of her diagnosis. She was still managing to live independently with care provision, but this would not be for long.

She was spending Christmas day with us and I’d settled the girls in bed relatively early, which was unusual for two children with Autism. I came downstairs and sat by Mum on the sofa expecting to see her usual sweetly vague smile when she suddenly took my hand and began to talk to me.

Like she used to, like she hadn’t done for so long.

In that conversation she told me how proud she was of me. That I was a good mum, and how she knew that things were difficult, but to keep going exactly as I was doing.
She talked about my brother who had died when he was 17 on another Christmas Day in 1978. I called for Phil, to come in to the sitting room and he chatted to her too. She stayed like this for about an hour and then slowly began to lose her thread and her words began to jumble and lose meaning and her sweet vague smile returned.

Still gentle, but once again, back into the darkness of her condition which eventually took her from us completely in 2011.

I’m not a film critic so I don’t have to try and find anything wrong with About Time, which is good because there isn't anything wrong with About Time. It's a lovely, funny, warm and embracing look at love and families and hope and truth.

I can also say thank you to Richard Curtis and everyone involved, for a film which gives us all permission to remember and celebrate what really matters.

All I know is that in the age we are moving through currently, there will many who might not want to revisit this historical period of their lives.

But as ever we look to the artists to raise us from the depths of despair, of hardship and of pain, for a little respite. This film is in the finest traditions of escapism, through truth; of story telling without cynicism and of the embracing fact that love, wherever you find it, still matters more than anything else we will ever experience.

It’s about time.

Saturday, 7 September 2013

The Queue

Phil is just back from the chemist. It’s Saturday so as you can imagine it’s busy. 

Phil was waiting his turn when the lady in front of him handed an A4 size blister pack of medicines to the chemist and said that this weekend’s medication was missing. The chemist was confused and the lady was adamant.

Phil just knew.

The lady became frustrated and was insisting that the chemist had got the medication wrong. “They are missing” she said “where are they. I need my tablets”

The queue began to lengthen. Behind Phil another man was becoming annoyed and with every question from the lady he sighed and tutted.  The lady continued, by now she was becoming frustrated and annoyed.

The chemist knew.

The Chemist excused herself from the lady and went to speak to another member of staff. The lady turned to Phil and said “honestly everything seems to be such a song and dance these days. It takes ages to sort anything out doesn’t it” Phil said “Oh it does”

The lady looked at him and smiled a lovely smile. Gentle and calm.

Another member of staff walked past them both and left. There is a Dr’s surgery close by and Phil watched as the staff member went directly there.

The angry man gave up and marched out.  His morning made infinitely worse no doubt by a “foolish old woman” keeping everyone waiting.

Then the staff member came back, and spoke to the chemist.  “I wonder if you’d mind waiting for a little while we need to speak to your Dr” she said gently to the
Lady. The lady took her seat.

Phil knew, the chemist knew and when Phil told me this story I knew.

Alzheimer’s disease in the early stages causes much frustration to others unfamiliar with the condition.  As we race through life assured of our own importance and correctness, we don’t always have time to remember that we are not all gifted in the same way.  Yet we should. We still have that capacity to remember. Those with Alzheimer’s do not.

 Sadly accidental overdoses of medication are common. 

Short-term memory loss is the first part of the brain to be affected. When taking tablets daily is routine nothing distinguishes one dose from another, and when your concept of time is altered an hour passed, could be interchanged for a day.

It was clear to anyone taking the time to notice, that this lady was one who needed compassion and empathy, not frustration and ignorance.  The chemist took that time and realised how potentially serious the situation was.

Irritated bystanders, making the lady feel worse in her confusion, because of a brief interruption to their day, only causes more confusion and fear. Because that is the thing about losing your memory, it’s terrifying.

Phil knew because of my Mum. The sweet smile to hide the confusion was one which we knew well. She spent her life caring for others as a nurse, and in relaying this I’m attempting to continue to do that, in the way that she would have done.  

It’s a request for compassion for strangers and for kindness to a known or unknown vulnerability Irrespective of how irritated you may feel or how experienced you are, slowing down gives you time to consider.

That’s what Mum taught me to do, directly and indirectly we need to do this more.

We miss her everyday.

Friday, 30 August 2013

Fifteen minutes

I’m used to losing people I love. Whether it’s actual loss like the death of my brother at 17 or my mum at 77, or emotional loss like my mum’s slow development of Alzheimer’s or my learning disabled daughter going to residential school, I’m quite familiar with the concept.

Being a carer for twenty years also familiarised me with the notion of being a loser. Because when your needs and wishes are superseded by actual needs and advocacy for 3 other people, you have to adjust to your position of failed hopes because otherwise you fail people whose lives depend on you.

I’m 47 now so in the years that I stood back from ambition and desire and career and status, I was able to learn things about myself and about life that gave me clarity of viewpoint.

In short I learnt what mattered. I learnt that empathy is a gift, which comes naturally to some and one which definitely should be valued much more than it is. I feel it’s so lacking in our dealings with one another that it really should be taught in schools.

In recent weeks we’ve seen that the lack of empathy, which is so crucial to our humanity has entrenched itself on social networking sites. People write messages to one another, which are sometimes criminal like threats or are morally criminal, like bullying.

Either the lonely individual venting at high profile people from their safe place of anonymity or more worryingly people with a platform deciding to organise and orchestrate attacks on those people they deem to have transgressed.

It is those people who are the most worrying to me.

Andy Warhol said that in the future all of us would be famous for fifteen minutes. I’ve tried in the fifteen minutes I’ve had, spread over five years of online campaigning, to make sure my time counted.

I haven’t always succeeded and I haven’t always been polite but the horrors unfolding for many disabled people, whether hate crime in our streets or policy from our legislators has made me acutely aware that there are real lives at stake again. These lives have value to me.

So I’ve used my time to tell these stories, I’ve used my time to shout up.

What I’m seeing now is that these raised voices on social media, spreading out into actual media, are not shouting up but instead shouting at, their perceived targets.

The crimes their targets stand accused of are not crimes of actual transgression but of perceived transgression. Myths begun by bullying mobs are spreading like the norovirus they truly are and like the norovirus they are composed of bile and excrement. Clones with the same values further this perversion of truth and frustrated ambition; the mobs are now dominating all online debate and conversation with a reign of terror, which ensures that too many people are being silenced or hounded into submission.

Meanwhile racists, misogynists, homophobes, disablists and the religious right can stand back with a self-satisfied smile and watch as their work is being done for them. Because now those who would formerly have challenged such bigotry across social media, are removing themselves from these platforms, because the mobs are wrongly accusing them of the very things they fight against.

The mobs so assured of their own correctness, are simply ensuring that the only voices being heard are theirs and they are venomously attacking the wrong people.

In their dogged pursuit of this one objective they are failing everyone else. They want their voices to be heard but they fail to recognise the crucial flaw in their determination is that they are incapable of listening. Their message is one of denigrating others and as they vent their own agenda of personal ‘injustice’ they silence those who speak of actual injustice affecting millions of people.

There has never been a more crucial time to dance in the light and to broaden the light to those who are standing in the shadows but those occupying the social media stage currently seem to have forgotten why they claim to be there.

Women attacking other women, activists, attacking other activists and fracturing political agendas of selfhood, are demeaning the struggle so bravely fought for around the world.

Our artists, writers, storytellers, journalists, campaigners and musicians have a wealth of real stories to tell.

Yet the poverty of activism which now seems to dominate our media of “he said” “she said” of article and counter article, of sound bites and quotes and ‘who did what to whom’ is predicated on a “what about me” ideology and it’s slowly suffocating actual debate.

We need to recognise and grieve for this loss, as it's a huge debasement of the forum of vital debate.

Stand back, rethink and for the sake of us all, make your fifteen minutes count, make it mean something other than your own ego, or please hand the microphone to someone else.

Saturday, 24 August 2013

2010's versus 1970's

      2010's        v     1970's

Grand Theft Auto
Drink driving without a license
Couples Counselling
Owning a shed
Diverse Sexuality
“Queer” or “Normal”
Equal Marriage
Substance abuse
Post work wind down
Page 3
Page 3
Colour TV
The Six O’clock News
Two plastic cups and a piece of string
Women only Gyms
Working Men’s clubs
The Internet
A diary
Top Shelf
Poor People
Working from home
3 day week
Mobile phone
Wimpy Bars
Coke Wrap
Coke Float
Jennifer Anniston
Farah Fawcett
Justin Bieber
Little Jimmy Osmond
National Milk Bar
Fruit Tea
Marks and Spencer
Marks and Spencer
Indoor Market
Waitrose Home Delivery
Mobile shop
Transistor Radio
Two Hairy Bikers
Fanny Craddock
Ant and Dec
Morecambe and Wise
Culture of Hate
Winter of discontent
Z Cars
Gap Year
Fruit picking
Casual Labour
The Queen
The Queen