Not Mid Morning Matters

JD in the Morning, off air…

Tag: BBC Radio Bristol

M.E again

When I met Naomi at her home last year she has been housebound since her teens. I have since researched her illness and spoken to others who live with M.E. I have interviewed those who are trying to raise the profile, the money and challenge for the possible treatments for this chronic condition. From all this a number of issues have become apparent to me about M.E.

The first is that this illness is hidden. The considered numbers of those living with ME in the UK are 4000 per million, making a total of around 250,000 with diagnosed M.E. In the U.K., from what I now understand of this illness, the diagnosis is, at best, less hit and mainly miss. M.E is mostly not a positive diagnosis but a diagnosis of exclusion, a “we don’t know what it is so it maybe M.E”. Sonya Chowdhury, who runs the Bristol based Charity Action For M.E, suggested to me in a recent interview on BBC Radio Bristol that M.E today is like cancer from a generation ago. M.E is a phrase, a headline with little story, known as one illness, one size fits all. Today, for cancer, this is not the case so maybe the future of M.E is positive diagnosis and targeted treatment for the potentially many types of M.E there could be. More personal evidence about the state of M.E diagnosis is that someone I know took ten years to get their diagnosis while another friend took just 10 months. I’d wager that many more are living with the symptoms of M.E and are battling not knowing why or what they have.

The second thing I have learned since meeting Naomi and sharing her story of living M.E is that the illness is a lot more common than I realised. It is hidden too. Six people I know well who have the illness. Six. Before meeting Naomi I had heard very little about the illness and I had bought into the “yuppie ‘flu” tag. All six family and friends I know have varying degrees of this chronic and very real condition. Why did I not know? It is because they were ashamed to talk about it, to tell anyone, to fess up to having M.E. They were ashamed of it for fear being judged as hypochondriac, sickly or malingering. They did not want to that one person in the office who is “always off sick”. You know they type? You, me, we are wrong.

The third thing is something I really don’t understand. Why does the media still portray this illness as not really real? I have seen and spoken to those who have M.E and heard ans see their realities of it. I can say that it is real to them, to their doctors, family and friends. It has real consequences and a reality all its own. The media “it’s not really real” attitude perhaps leads to the wider medical profession not taking M.E seriously. This may lead to a lack of general understanding, investment, treatment or even attempts to find cures. Maybe it’s simply because there are just aren’t enough people dying from M.E? It only takes away your life force, without warning and little hope of it coming back, no matter how hard you will it. A recent Lancet report and paper suggests that those with diagnosed M.E are six times more likely to take their own lives than you and me. That can’t be acceptable.

So what should be done? One; take the illness seriously and give it a voice. Two; call on those who can make a change to make a change. Three; the next time you hear about M.E take it seriously. Please take M.E seriously.

Decisions, decisions

Life can be seen as series of choices, right and wrong turns, decisions. We, as a nation, face a few in the coming weeks and months. Like all choices, turns or decisions they will have consequences and outcomes that we can never fully predict. Change is good thing and it is, mostly, a positive part of life. To not embrace change is to not embrace all life is or can be. Change is possibility realised.

It’s been a while since my last blog, before Christmas last year, and much has changed. And yet much more remains the same, constant, continues. Living with the loss of a child is dreadful. It’s not in the natural order of life. Having lost a parent, close family and friends both older and younger than me, this particular loss is consuming. At times it is all-consuming. Yet from this you have to change, evolve, make new turns and make decisions to combat it, to try to ride it or it will beat you.

This week I made the decision to take two days off work. I was tired, my mind is not as sharp as I want or need it to be (and has been this way for some time now) plus I could feel the hands of depression on my shoulders. I recognise these hands from times past and I am scared, truly scared of them grabbing me again. Work, my role, what I do with and for the BBC is a privilege and it has been my anchor since Polly was killed. For a few hours each day I can take myself out of my own porous wallow and help others, maybe. My fear of taking time off was that I would end up in my wallow with no escape. I was right. Yet I have made a couple of decisions to try to turn my one life around.

Firstly I have begun counselling. My fear of this was that I would end up popping the lid off the container of my life and may not be able to get it back on again. I liken it to a forgotten Tupperware container of leftovers at the back of the fridge that you should never pop the lid off to smell the contents, you should just throw it away, both container and contents. Well my lid is off and I shall see (and feel) what comes next. The hardest thing of all in counselling for me is answering questions, not asking them, and my not trying to control the conversation to arrive at the story’s denouement. I have no idea how this story will end and that is both frightening and comforting at the same time.

Secondly I have joined a gym. I don’t like gyms. They are not my tribe. Why would you run on a machine and not get anywhere? I needed to exercise though, lose a stone and paying to be a member of a gym means I have to actually go or I will fall into what gyms really want from their members, which is their money but not their attendance. I have often wondered what would happen to a gym is every member turned up at once? A week in and having been four times, including a great session of boxing, I can say that it is having a positive effect on me. I have only joined for three months so being a member of a gym has a beginning, a middle and an end.

And this is my biggest challenge.

Memberships, life, relationships, work, love all have a beginning, a middle and an end. The reality is that most of the time we don’t know where we are along this trio of progress and reality. Ends can happen unexpectedly. Sometimes you can see them coming and sometimes you can even avoid facing them. Sometimes you can even pro-activate them, such as our EU ‘in or out’ choice we all face on the 23rd June. But an end, any end is never as simple as that. Never.

The only thing we can all do is to try to make informed choices, to decide based on what we know and try to realise what we don’t. To blindly follow others, to make choices just based the past, on others or plain ‘leadership’ is both foolish and naive. Others choices are not our choices. You own your decisions and choices much like you own your vote.

My aspiration this year is to have the dullest year possible, to react rather than pro act (not ever my natural state) and this proving harder than I thought. I have some big decisions coming over the hill that may surprise me and others in their outcomes. One thing I have certainly learnt since my daughter’s death is that change comes in many guises. It is what you do when change comes that makes the next moment, the unknown, both challenging and revealing.

Here’s to the next choice, turn, decision and revelation.

Good Grief Polly

It has been exactly four weeks since my eldest daughter Polly was killed in a car crash. It has been just over two weeks since her funeral, which was attended by 480 people. We thought about 100 would come.

In my last blog I wrote about how my daughter’s death had been reported by the media. This included the BBC, an organisation I am proud to work for, love and yet worry about on a daily basis as it faces attacks on all sides. The BBC were accurate in their reporting of Polly’s death, even if they did not include all the information they had sought from the family. They have written to me and I feel for my colleagues who are among the best journalists I know. We can all learn from this. I will certainly be a better journalist for all this.

The newspapers however were not accurate. They lifted quotes from social media without checking the provenance or the facts, causing further distress. They made claims of contact to me and other family members when to date no evidence of this can be found. The Bristol Post published my blog, contacting the BBC press office to see if I was going to get the sack for it. The credited ‘reporter’ did tweet me in the afternoon prior to publication to try to speak to me. In the Bristol Post’s published ‘report’ on my blog it says I had ‘been spoken to’ by the BBC, with all the disciplinary tone this implies. The BBC have been nothing but supportive. Other papers produced articles that were poorly written, inaccurate, with questionable personal relevance and lacking in either fact or respect. Formal complaints have been made.

This first four weeks of grief has been, err, yes. I have been back to work at BBC Radio Bristol and although I am trying I am finding it very hard. The listeners have been brilliant and the staff, my team have been complete in their support. I always said to my two elder children that they should never go to bed on a Sunday dreading Monday because if you do then you really are in the wrong job. Stop. Change it. Go to bed fundamentally happy. I love what I do and I can only hope the joy will return too.

Sitting here four weeks to the day after Polly’s death I thought I would start to make a few changes to my life. I’ve been told this is a life-changing event and I can see it is. I’m not unique, nor is our family. Other children have died in many tragic ways. Death is life and grief is not a competition as there are no winners.

The first week was awful, truly awful but with moments of real, honest, heartfelt laughter. Laughter is vital. Gallows humour is essential. You can learn from grief. I believe that.

Talking with my family, my dearest friends, my partner and my boss at work has been a huge comfort. This small group of people have been extraordinary and have reminded of who I am when I still really have no idea who I am at the moment. They have all done their best to keep me from jumping off at the deep end.

I won’t go through each day as I don’t want to read it back next year and be reminded of it but I can tell you that the first Tuesday was the worst day so far. See earlier blog. Last Sunday was awful too but lead to a Monday that I felt better. The grief kicked me in the nuts again on Tuesday. Simply, no parent should carry his or her child’s casket into a funeral. I now know what is really meant by a dead weight.

So what have I learned so far?

Drinking really does not work. I am a drinker and a cigar smoker. Don’t rely on drink; rely on your family and friends. I will give up smoking.

Right any family wrongs when you can. Don’t ever let them fester. Right beats wrong as much as truth beats lies. Don’t think you can put things right later. There really is no time like now if it needs to be said or done.

Listen to those who know you; your colleagues, your friends, your partner and your family. You are not you when you are grieving but a version of you. They know you and they will help you do what you should be doing when you really are not you.

Ride the support, the love and the messages you will get. The social media world means that you will be swamped by it. Take it, scan it, save it and then in time you can come back to it.

Cry. When you feel the need to cry just let it out. Don’t hold it in. Don’t stiffen your upper lip. Don’t worry about where you are or whom you are talking to. Cry when it comes. You need to and perhaps others need to learn from you that it is okay to cry. Try not to suppress how you really feel. I find this very hard as it is changing a habit of a lifetime.

Try and eat. I’m failing at this one but trying too. I’m either a simple snack that gives me all I need to keep going or a lavish taster menu with fine wines sort of chap. Polly, I am told, was the same.

 

What M.E?

In the last few weeks I have seen the best and the worst of what we are capable of. The worst was on a beach in Tunisia and those who died at the trigger of an Islamic Extremist gunman. This is only the beginning of this story from the country that seeded the Arab Spring. Tunisia and Europe will struggle to come to terms with the consequences of summer of 2015 and the biggest problems may have already begun. Any country that relies on tourists spending money for a significant part of its GPD is going to hurt as this cash tap is turned off. The financial pain that Tunisia will feel will be very easily harnessed by those who have no desire to encourage the West back with their flabby white bodies to its turquoise seas and sandy beaches. Maybe this is part of the terrorist plan? As ever social media will have its dark, digital hand in all this.

Yet something else has kept my hope alive and well.

Two weeks ago I went to see a 38 year old woman called Naomi at her home to interview her for my BBC radio programme. I don’t like doing what are known as a ‘pre-rec’ after a three hour live programme. I always feel ‘flat’ and feel I lack the ‘spark’ a live show and red ‘ON Air’ light gives me. After this interview I will never be so pathetic again.

Naomi has lived with M E, Myalgic Encephalopathy, for 25 years of her life. She went from being a bright, vibrant young girl to seriously ill in a matter of weeks. Now Naomi is barley able to get up from her bed for 20 minutes a day because of a virus and how her body reacted to it. When I knocked on the door to interview Naomi I knew little about M E. other than its dodgy reputation and the questions about whether it was actually a real illness. When I left Naomi’s parents home where she lives, having spoken to her, her mother and brother for an hour I cried.

I played the recorded interview out on my radio programme, put the video of Naomi’s story up on social media, lovingly made by her brother Tom, and thought that was it. I was wrong.

I am not a big fan of social media. It seems to be little more than a platform of inanity and fantasy. At it’s worst it is a vehicle of anger, hatred and allows those who delight at taking offense at anything to hide behind their made up names and say hurtful, stupid and ill-informed things without real consequence or responsibility. This is not to be confused with free speech. Free speech is saying what you feel or believe and having the courage to be seen standing up to say it. At its very worst social media is full of narcissists and the delusional with a worrying need ‘followers’ or ‘friends’, a mob of cowardly, unidentifiable cockwombles hiding, carping and hating.

Social media can also be a huge force for good; a force for change and it can give voice to those who don’t have one. Naomi’s story on the radio and  Naomi’s video story has revealed thousands like her who are suffering, thanks to social media.

I never knew how big a problem M E is. It is only through Naomi’s courage in giving what little energy she had in telling her story and allowing me to share her story that others now have a voice too. Thanks to Naomi others can get help and have hope. This includes my own stepsister who I never knew has M E until this week.

I will now do more to help others with this condition. M E is dreadful, debilitating illness that when it takes hold it never lets go. For Naomi, for all those living with chronic pain and M E, I will do more while I can. I will also use social media too because I can finally see what it can do rather than what it seems all too capable of doing now.

Polls apart

For the last six weeks I have honoured the BBC’s request of me to step aside from the daily ‘phone in show I love and present the afternoon show, which was great fun and I really, truly enjoyed. It reminded me that radio and broadcasting is to inform, educate and entertain and I thank the BBC for this.

I also took this chance to positively step away from all the news I could. I avoided reading the newspapers, blogs, magazines, linked articles, opinion pieces or listening to podcasts. I just listened to the local news when I was on air and other news when it came to me, rather than me actively looking for it. I haven’t watched a news programme in over 6 weeks apart from the election night coverage. In the last few days, minded I am going back to my topical news based radio show on Monday 18th May, I thought I should get ‘up to speed’ on things and start to cram. I need not have bothered. Hardly anything has really happened nationally or locally apart from a change of government that the media failed to see coming.

I have learnt a great deal this year about many things. Firstly, the real kindness of people in contrast to how foul and depraved others can be for no real reason other blind stupidity, misplaced loyalty or actual mental health issues that could happen to any one of us at any time. Secondly, there is a real contrast between reporting and actual journalism in our papers and in on our broadcast media. There is plenty of the former but very little of the later. Thirdly, the news really doesn’t change that much at all. You might like to think it does but, in reality, nothing much happens other than the constant reporting on reports.

Here is a prime example of this. According to one study by a leading University on how the general election was covered by the main broadcasters, over a third of the coverage was based on reporting the polls. Broadcasters reported how close the polls were and what would happen if the polls were the actual result. There were lots of talking heads about red lines, coalitions, compromises and so on. The press followed this too. Nobody asked the question ‘what if the polls are wrong?’. In contrast the NHS got less than 2.5% of TV news coverage and according to other polls the NHS was a key issue in the election. Were those polls wrong too? In the current post-mortem of the election with the Left is complaining the Right got biased coverage and vice versa, we should all be complaining that our news was dominated by polls and surveys but very little actual journalism.

Any journalist should ask questions, get answers and then question those answers, regardless of what he or she might actually think. Thinking is not knowing and when you hear or read the phrase ‘I think’ it should be a warning to us all. Reporters are not journalists and journalists should not be reporters. To report and not to question is not news. To have an agenda and report it is not news. If you want this then buy your daily newspaper of choice just to confirm you were right all along.

Here’s a thing to try. Buy a newspaper you don’t usually take and see how you feel once you’ve read it. Listen to and watch other sources of news. Find local bloggers writing about where you live. Go beyond the lazy reporting and ask questions of those who just rehash press releases or report what they have been given without asking a single question about it.

The biggest lesson I have learnt over the last six weeks is to question everything and believe me I will, starting now.

Cut the efficiency crap.

All local councils and unitary authorities are about half way through their cuts, austerity programmes or whatever you choose to call them. Bristol City Council have implemented just shy of a 150m of cuts by slashing grants to service providers and charities, cutting services and making efficiency savings. There will be more to come. Bath and North East Somerset have cut, so have North Somerset and South Gloucestershire. Have you noticed the cuts so far? Have you? Really? Probably not as the cuts so far have mostly been ‘efficiency savings’, changing what councils do and how they do it so the cuts actually doesn’t bother you. They should.
You will soon begin to actually feel the Council cuts too, and there will be little you can do about it. Or can you?
Take BANES. One of their cuts, proposed last year, was to close public toilets. ‘No’ said the residents, one of whom ended up sleeping in one the toilets slated for closure in centre of Bath. The Council decided to not go ahead with the cut. In Bristol, the council have 19 members of their Parks, Crematorium and Cemetery tending these council grounds and gardens. They were late in recruiting them, maybe as a result of wage saving or a wage bill cut. On my radio programme we heard that Bristol City Council were not looking after these parks, that cemeteries were over grown and one widow told me she fell into an over grown grave trying while trying visit her husbands grave because the grass was so tall. Two weeks later these cemeteries have now been tended, of sorts, and the grass has been strimed. Why? Simply because pressure was brought to bare on Bristol City Council.
Is this the answer? Shout on local radio and council will do it? Maybe, but it is a little more complicated than that.
The liberal democracy argument is that you vote for your councillor (or Mayor), the one with the most votes gets in, they act in the interests of all the electorate and then, in due time, you vote for them again (or not) depending on how they have done. The reality of our actual relationship with our council is that they don’t really effect most of us beyond paying out council tax and them collecting our rubbish and filling in the pot holes on the roads we drive.  It all seems very simple. But it isn’t.
Local Government effects you more than you realise and to not get involved, to just do your recycling and drive repeatedly over a pothole riddled road without reporting it is NOT good enough. You need to get involved. The money you pay every year is enough for a good family holiday or a better pension when you retire.  You need to hold your councillor and your council to account. If you don’t the leaders of each council or the elected Mayor of Bristol will end up being responsible for managing the waste management contract and adult social care and they will be unable to do anything for you or your neighbours. They will do what they have to do and not what you want them to do, with your money.
So what has happened to your money so far? Here is a clue. Most of the cuts so far have been achieved through ‘efficiency savings’. Bristol achieved 50m through ‘efficiency savings’. Why was any council allowed to ever be inefficient with your money. Every penny you pay should go towards what you want it to, for the benefit of you and your neighbours. Any council inefficiency is not acceptable. It’s your money, it’s your vote and between you voting it is your right to hold your councillor and council to account.
To put this another way, would you give someone you know a £150 a month, every month and not ask questions about what they were doing with it? It is your democratic right to make sure that your council do what you want or, at the very least, you know what they are doing even if you don’t like it. Never again should we allow any council to say they are making ‘efficiency savings’, and if they do you must ask why. And then ask why again.

The perils of Father Christmas on the radio

It’s almost here or it is as simple as there are just three more sleeps. Noddy Holder has made his pension shouting about it. Will your Christmas be like it is on the telly? Chances are you don’t even have an open fireplace in your living room. It’s a difficult time of year to be a journalist when the world is point east, toward a bright star or Cribbs Causeway as its better known while you are pointing west, toward a news story.

It is even harder if you do a daily topical phone in on the radio. Getting a listener to talk about something other than Christmas, even if they don’t actually give a monkeys about it, is quite difficult. One could start to discuss the truth and realities of Christmas but this is VERY dangerous ground.

On BBC Radio Bristol this week I ran a series looking at how other faiths and religions mark, celebrate or avoid this time of year. Very illuminating it was too. We had a lot of praise from listeners and some critique too, which I always welcome. As ever in these matters, if your faith does not chime with another there is a conflict of the heart, soul or body. ‘Twas ever thus.

One thing you can never EVER discuss is that Santa Claus or Father Christmas does or does not exist. You can’t even challenge the notion of his existence, his origins or meaning. It’s the law. Whether he is or was a saint, a sinner, German, a construct of the coca cola company or just a retail catalyst to get you shopping for one day of consumer excess I will let you decide.

Here are a few thoughts on this. Parents must maintain the magic of Father Christmas for as long as possible so children believe in him, but at who’s cost? The parents, maybe. As soon as the Santa secret is out, the Christmas stocking stops and the christmas spend decreases significantly. You might say that this is a retail conspiracy. You might very well think that, I couldn’t possible comment, to quote a former fictional Conservative Chief Whip and PM.

Here is another thought. This time of year and the use of Father Christmas is a useful juvenile binary judicial system. Any potential crime or disciplinary infraction committed from early October means you are either ‘naughty or nice’, you are listed accordingly and duly punished on the big day. You can even commute your crime and get a lighter sanction for good behaviour.

One last thought on Father Christmas. He is the ONLY exception to the rule of ‘don’t talk to strangers, don’t engage with them’. Indeed it’s okay for Santa thought to break into your home, steal food, creep up to your child’s bedroom and leave toys.

In short if you even dare to say you don’t believe in Father Christmas it is career suicide and likely to get the local paper on your back with a campaign to have you taken off the air, taken to the local park and force-fed carrots while listening to Shakin’ Stevens Merry Christmas Everyone over and over and over again.

So without actual commitment on Father Christmas/Santa/Ole Nick’s existence I leave you with this final festive thought. The are four stages of Santa. You believe in Father Christmas, then you don’t, then you become Father Christmas then you look like him.

Merry Christmas and a safe 2014.

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