Monday, 27 June 2016

After the referendum diagnosis

I've been trying to explain my feelings this weekend. "Depressed" is what I said to one person on  Sunday morning. But that's not quite the right word. I think the best I can do is an analogy.

When I was diagnosed with a motor neurone disorder (MND), I was shocked. Thereafter I was living in a new world, a world I hadn't and would never have chosen, a world I really did not like. I knew some things about it, such as it would be life-limiting. The chances were that I would die quite soon, though I might just possibly be lucky and live a long time like Stephen Hawking, a life of ever increasing dependence and frustration. Whatever happened, my world was completely changed, and would affect not only me, but also my family, my friends and my colleagues. My job would be affected; my future would be different. It wasn't a pleasant prospect; it didn't promise better things. And I lived under that cloud for some time.

It's true that for me not all my worst fears have been realised. I'm still alive fourteen years later, for a start. But I've had to give up my job; my life is very prescribed. I'm very much a spectator and not a participant in what's going on. It's not that I feel sorry for myself (much). But I do know a melancholy disappointment at the increase in my isolation. And sometimes that initial cloud returns. I wouldn't say life is better now than before my MND, though it is still life and I'm still grateful to be able to enjoy it. As a family, we've just had one of those events which give me joy.

Among the good things some have arisen from ending up in a wheelchair. Not that I'd not far rather be able-bodied. It hurts like mad not being able to go with Jane on walks on the hills, along the coast, exploring cities.... It hurts a lot that Jane's life has to revolve around my needs and demands. I hate that she has to dress, drive, clean, push, cook, virtually do everything for me. But at least now I know what it feels like. So, I think, I have more empathy with the many disabled and discriminated against people in the world. And of course more understanding of facing an incurable illness. Those are good, if hard, things. Of course I don't know what lies ahead. Physically things won't get better for me. And I'm under no illusions that the NHS which has cared for me so extraordinarily well will suddenly receive a life-giving injection of cash as a result of departing the EU - the opposite, I fear.

Photo: Escapeartist.com
So, after Thursday, I'm living in a new world, not one I chose, not one I like, but I shall have to come to terms with it. It's revealed a diagnosis of a fractured, disunited kingdom, with propensities to greed and hatred, and a national body whose parts are severely, if not terminally, out of sync with each other. I'm afraid I'm unable to share some people's jubilation about it. I don't share acquaintances' delight and conviction that "we have been saved by praying women". However, I've no doubt we shall survive and find some good redeemed from the sad mess of the past month (indeed years). I trust so, although I fear for too many it will bring only pain and grief. That's how I feel.

So it doesn't really help to tell me to pull myself together or to tell me that it will all be for the best. Nor that it's God's will - or his judgment. Just possibly you might be right, but it's not awfully helpful.

Friday, 24 June 2016

After the ball is over

This post is, to be honest, for my own therapy.
www.freeimages.com

At shortly before six this morning Jane turned on the radio and we heard the end of the all-night referendum broadcast and the news that the Leave campaign had won a slim majority. The United Kingdom would leave the EU. My stomach sank as the markets had done. Well, I don't want to bore anyone with my disappointment. However, I was uncharacteristically moved when David Cameron announced that he would in due course resign and I wasn't unduly surprised to see Nigel Farage soon rowing back on the £35 million a week to the NHS promise of the Brexit battlebus ("It was a mistake").

Many, though not all, my friends on Facebook expressed their shock, shame, sadness and even anger over the outcome. I was particularly sorry for the younger generation whom I think have been let down. A YouGov poll indicated that they overwhelmingly wanted to remain:
I can do no better than apologise to my children and their generation. (Our district, if it's any consolation, voted for remaining in by a majority of 13%.) However I suspect that this country will become and feel very different in the years to come, less open, less friendly and less tolerant. Less European - and I regret that. I devoutly hope that our vote will not unleash a wave of nationalism across the continent, but I fear it will, and that would be more than tragic.

The final word I will leave with a good friend who cares about people: "Heavy feeling everywhere. Son in law up all night worrying about the markets; next door neighbour in street worrying about mortgage. I feel a deep wistfulness for 18s to 25s, 70% in favour of remain; shame before Poles and Romanians, who work cheerfully and hard at jobs many of us would turn up our noses at; fear for the most vulnerable immigrant communities, who must understand this message, especially asylum seeker friend of mine in the country for 13 years and more and still without permission to stay. Also a shamed awe before the forgotten working classes in outer estates, forgotten by people like me in our leafy suburbs, who have no one speaking up for them, in many ways completely helpless before a world not on their side, except for this act of political vandalism, that ultimately won't help them. 'The weight of this sad time we must obey' (Lear)."

Wednesday, 22 June 2016

I am voting REMAIN

I'm a bit upset to find that my post in which I expressed my doubts about the EU has widely been taken as an indication that I was in favour of Brexit. It is true that I was leaning that way, but all in the end I said was that "I ha'e my doots". Since then I have clearly said that I am going to vote to Remain. That however has not had such wide circulation.

So I want to make my position quite clear. As the final days of the campaign have unfolded, the barely disguised racism and xenophobia of the Brexiteers has more than saddened me, appealing as it does to the basest tribal instincts in us. Moreover, although they talk about the fear tactics of the Remain campaign (with a modicum of justice), their scaremongering is even worse. As a Christian one of things that most saddens me is to hear other Christians implying that the middle-east refugee crisis is an Islamic plot to flood "Christian Europe" with Muslims, and thus imperil the Church in this country. The corollary of this that they would choose a religion-based immigration policy (similar to Donald Trump's "no Muslim" policy). It seems to me that this totally fails to see the fact that the refugees are not seeking to invade but to escape unimaginable destruction and suffering caused in part by so-called Christian powers. It seems to me utterly inhumane. It's also a failure of faith in  Christ's promise that not even the gates of hell would prevail against his Church.

That is to say nothing of the immorality of the Brexit cure-all for immigration, the quota system. This is based on a points system such as the one used in Australia, which is designed to limit entrance to those with skills that are needed here. Skills like doctors, nurses, teachers, for example. Sounds sensible - until you take the trouble to think of the consequences for the émigrés' nations. These will generally be poor and developing countries who have funded these professionals' training and who need their skills more than we do. In fact their development depends on such people far more than on aid. What the quota system does is contribute to increasing the rich/poor divide in the world. It is the epitome of unneighbourliness.

It is a pity, it seems to me, that we have not heard more of the positive reasons to remain, which I briefly alluded to previously. The best summary I have come across is this.


"We are convinced that working together is vital for our human family. Our vision is for a world where all people live in peace with the opportunity to thrive. We believe that Britain’s membership of the European Union is a key way we can help make that happen. Here are five reasons why:
1. Peace and security. The European Union was established in the aftermath of two world wars to build and maintain peace in Europe. In 70 years, it has made European war unimaginable by bringing together leaders in co-operation, not conflict. Against the borderless threat of terror, the people of Europe are stronger together. By remaining in the EU, Britain will not only continue to be a part of this project but help lead it.
2. Community. Through our membership of the EU, Britain belongs to a community that crosses national borders to work for our mutual benefit. A community that celebrates inclusion and diversity enriches all its members.
3. The environment. Climate change and air pollution do not stop at borders. Every nation needs to take action to tackle them and protect our environment worldwide. The EU has taken a strong lead through binding agreements that commit its members to specific action leading to lasting change. Our membership of the EU has the welfare of all humanity in its sights by protecting the planet that is our common home.
4. Human dignity and social justice. The EU was founded on a strong emphasis on the solidarity that promotes and protects human rights. By being part of the EU, many basic rights we now take for granted have been protected. The EU also stands up for justice for those outside the EU, for example in relation to international development and human trafficking, matters that can only be tackled with international cooperation.
5. Prosperity. Inside a free trade area with access to its markets, British businesses – small and large – are able to export goods and to prosper. Millions of jobs have been created, and hundreds of billions of pounds of investment have helped strengthen our economy." (from Christians for Europe)
That the future of the planet could be affected might seem far-fetched, and yet it is true that global warming knows no boundaries. A friend, Martin Hodson, who's a leader in environmental studies, wrote this, "I work a lot in this area, and the EU has been very good for the environment. We need to work together to tackle problems like climate change." 
I watched John Snow interviewing the war veteran, Franklin Medhurst, on Channel 4 last night. His message was clear. He wrote it in a moving letter to the Guardian. 
"It is helpful to be old, for in my lifetime I have seen world population increase threefold; a stable seasonal climate become wildly unstable with drought, forest fires and floods; the pollution by humanity of the planet’s earth, air and waters to a stage where all life is threatened; and violence become a permanent, continuous tragedy in a world of great uncertainty.

The only stable community in this universal upheaval has been the European Union, formed from the wreckage of a continent for which I and millions of others fought six years of war. I write as a former airman, having flown well over 2,000 hours against three despotic enemy nations. That victory for the democracies has given Europe 70 years of peace and security in a widely unstable world. The “leave” chancers are campaigning to abandon this steady progress, citing values false or irrelevant, while they have no plan of what to do after jumping ship.
If the nation should fall for this deceit I can only conclude that the lives of my comrades – Irish, Scots, Welsh and English – were lost in vain. They will be rattling their bones, wherever in the world they fell, at the loss of the beliefs for which they fought.
Britain in Europe will enhance progress to higher values in the greater world; Britain out means a return to the early-20th-century chaos of warring states against each other.
I am 96. I remember how far we have come. I know what we stand to lose.
Franklin Medhurst, DFC (RAF 1939-46)
Carlton, County Durham"
It seems to me tragic that so many are now wishing the break-up of the union that rose from the ashes of two dreadful wars and has been the basis for peace and stability since then. I know it is dressed up in jingoistic language, like taking back control and Britain being great again. But actually it is such a little vision. As the great poet said, "No man is an Iland, intire of itselfe; every man is a peece of the Continent, a part of the maine; if a Clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Manor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in MankindAnd therefore never send to know for whom the bell tolls; It tolls for thee." The fact is that Europe needs us - and we need Europe. It's not that the EU is perfect. No one on either side of the Channel believes that. So we need to be a part of it in order to be part of the discussions which will contribute to its reform and improvement, for our neighbours' and for our own sake. We will be better remaining together. 
Hence I shall be voting that we Remain.

I am voting REMAIN

I'm a bit upset to find that my post in which I expressed my doubts about the EU has widely been taken as an indication that I was in favour of Brexit. It is true that I was leaning that way, but all in the end I said was that "I ha'e my doots". Since then I have clearly said that I am going to vote to Remain. That however has not had such wide circulation.

So I want to make my position quite clear. As the final days of the campaign have unfolded, the barely disguised racism and xenophobia of the Brexiteers has more than saddened me, appealing as it does to the basest tribal instincts in us. Moreover, although they talk about the fear tactics of the Remain campaign (with a modicum of justice), their scaremongering is even worse. As a Christian one of things that most saddens me is to hear other Christians implying that the middle-east refugee crisis is an Islamic plot to flood "Christian Europe" with Muslims, and thus imperil the Church in this country. The corollary of this that they would choose a religion-based immigration policy (similar to Donald Trump's "no Muslim" policy). It seems to me that this totally fails to see the fact that the refugees are not seeking to invade but to escape unimaginable destruction and suffering caused in part by so-called Christian powers. It seems to me utterly inhumane. It's also a failure of faith in  Christ's promise that not even the gates of hell would not prevail against his Church.

It is a pity, it seems to me, that we have not heard more of the positive reasons to remain, which I briefly alluded to previously. The best summary I have come across is this.


"We are convinced that working together is vital for our human family. Our vision is for a world where all people live in peace with the opportunity to thrive. We believe that Britain’s membership of the European Union is a key way we can help make that happen. Here are five reasons why:
1. Peace and security. The European Union was established in the aftermath of two world wars to build and maintain peace in Europe. In 70 years, it has made European war unimaginable by bringing together leaders in co-operation, not conflict. Against the borderless threat of terror, the people of Europe are stronger together. By remaining in the EU, Britain will not only continue to be a part of this project but help lead it.
2. Community. Through our membership of the EU, Britain belongs to a community that crosses national borders to work for our mutual benefit. A community that celebrates inclusion and diversity enriches all its members.
3. The environment. Climate change and air pollution do not stop at borders. Every nation needs to take action to tackle them and protect our environment worldwide. The EU has taken a strong lead through binding agreements that commit its members to specific action leading to lasting change. Our membership of the EU has the welfare of all humanity in its sights by protecting the planet that is our common home.
4. Human dignity and social justice. The EU was founded on a strong emphasis on the solidarity that promotes and protects human rights. By being part of the EU, many basic rights we now take for granted have been protected. The EU also stands up for justice for those outside the EU, for example in relation to international development and human trafficking, matters that can only be tackled with international cooperation.
5. Prosperity. Inside a free trade area with access to its markets, British businesses – small and large – are able to export goods and to prosper. Millions of jobs have been created, and hundreds of billions of pounds of investment have helped strengthen our economy." (from Christians for Europe)
That the future of the planet could be affected might seem far-fetched, and yet it is true that global warming knows no boundaries. A friend, Martin Hodson, who's a leader in environmental studies, wrote this, "I work a lot in this area, and the EU has been very good for the environment. We need to work together to tackle problems like climate change." 
I watched John Snow interviewing the war veteran, Franklin Medhurst, on Channel 4 last night. His message was clear. He wrote it in a moving letter to the Guardian. 
"It is helpful to be old, for in my lifetime I have seen world population increase threefold; a stable seasonal climate become wildly unstable with drought, forest fires and floods; the pollution by humanity of the planet’s earth, air and waters to a stage where all life is threatened; and violence become a permanent, continuous tragedy in a world of great uncertainty.

The only stable community in this universal upheaval has been the European Union, formed from the wreckage of a continent for which I and millions of others fought six years of war. I write as a former airman, having flown well over 2,000 hours against three despotic enemy nations. That victory for the democracies has given Europe 70 years of peace and security in a widely unstable world. The “leave” chancers are campaigning to abandon this steady progress, citing values false or irrelevant, while they have no plan of what to do after jumping ship.
If the nation should fall for this deceit I can only conclude that the lives of my comrades – Irish, Scots, Welsh and English – were lost in vain. They will be rattling their bones, wherever in the world they fell, at the loss of the beliefs for which they fought.
Britain in Europe will enhance progress to higher values in the greater world; Britain out means a return to the early-20th-century chaos of warring states against each other.
I am 96. I remember how far we have come. I know what we stand to lose.
Franklin Medhurst, DFC (RAF 1939-46)
Carlton, County Durham"
It seems to me tragic that so many are now wishing the break-up of the union that rose from the ashes of two dreadful wars and has been the basis for peace and stability since then. I know it is dressed up in jingoistic language, like taking back control and Britain being great again. But actually it is such a little vision. As the great poet said, "No man is an Iland, intire of itselfe; every man is a peece of the Continent, a part of the maine; if a Clod bee washed away by the Sea, Europe is the lesse, as well as if a Promontorie were, as well as if a Manor of thy friends or of thine owne were; any mans death diminishes me, because I am involved in MankindAnd therefore never send to know for whom the bell tolls; It tolls for thee." The fact is that Europe needs us - and we need Europe. It's not that the EU is perfect. No one on either side of the Channel believes that. So we need to be a part of it in order to be part of the discussions which will contribute to its reform and improvement, for our neighbours' and for our own sake. We will be better remaining together. 
Hence I shall be voting that we Remain.

Saturday, 18 June 2016

Jo Cox - RIP

On Thursday a graduate of the same college as I went to in Cambridge was murdered. She was a 41-year old mother of two. Her name was Jo Cox. Soon the referendum hubbub was silenced. The press changed its usual tune from cynicism to praising politicians. We were reminded that people can and do enter the political arena, not from selfish ambition but out of the desire to make the world a better place.

Jo Cox had spent most of her working life in humanitarian service with Oxfam, Save the Children and the NSPCC. Within a year of being elected to Parliament in 2015, she was jointly chairing the all party Syria group and speaking up for the Syrian refugee children stranded in Europe. And yet on Thursday outside her Yorkshire constituency office, she was attacked and killed by a sick man who in court gave his name as "Death to traitors, freedom for Britain", whose real name is Thomas Mair and who seems to have been obsessed with neo-Nazi literature. Whether the man was influenced by the xenophobia peddled by some politicians and journalists, whether he disliked Jo Cox's pro-European stance, or simply her willingness to mix with support people of all colours, races and creeds, or whether he was suffering from an acute mental illness, we can't know. Perhaps it was a lethal cocktail of all of them.

Until her attack and death hit the news, I confess I did not know about her. But as her story and the tributes from all directions poured in, I soon gathered what an exceptional and lovely person she was, as is her husband, Brendan. When she died, he tweeted this touching photo of her beside the boat that was their London home on the Thames. The more I read, the more I thought, "She would have made a really great prime minister." To which Jane commented, "Not that I'd have wished it on her." However, in my view, she had the quality and talent that would have made her one of the best prime ministers of modern times. (Not a great accolade, you might think.)


One of the quotations that has appeared on Facebook since Thursday is poignant. The words with which it ends are especially so, because as history would have it she did risk life and limb, for the sake not only of her children but also for the thousands who have no one to speak for them. And the path she took cost her life.
I'm not sure that the by-line "Another angry voice" quite captures the spirit of Jo Cox. I suspect it is better represented by the man who knew her best, her husband, in the remarkable statement he issued on Thursday:

“Today is the beginning of a new chapter in our lives. More difficult, more painful, less joyful, less full of love. I and Jo’s friends and family are going to work every moment of our lives to love and nurture our kids and to fight against the hate that killed Jo.

 “Jo believed in a better world and she fought for it every day of her life with an energy, and a zest for life that would exhaust most people.

“She would have wanted two things above all else to happen now, one that our precious children are bathed in love and two, that we all unite to fight against the hatred that killed her. Hate doesn’t have a creed, race or religion, it is poisonous.

“Jo would have no regrets about her life, she lived every day of it to the full.”

As one of my friends commented, "Love wins." We have to believe it. We have to work at it. We have to love.

One way you can express a little love is to contribute to Jo Cox's Fund, set up in her memory by her friends and family, at GoFundMe.

Monday, 13 June 2016

Pluses and minuses both sides of the Atlantic

What a strange weekend! I suppose my highlight was Valteri Bottas coming third for Williams in the Canadian Grand Prix - the first podium position for our local Formula One team this season. I know the circuit particularly suits Williams' cars, but he was beaten only by a Mercedes (Hamilton) and a Ferrari (Vettel), and at least one of those uses the flexible wing of dubious legality.

And then on the plus side also, my mother-in-law who's staying with us enjoyed watching her near contemporary's birthday celebrations on television. That was a jolly occasion, I must say, especially when the sun came out for the party in the Mall. The extravagant trappings of our monarchy excite me towards republicanism, as does the structure of establishment that adheres itself to it. However I have great admiration for the lady herself; and I wonder whether her successors can measure up to her. And I do see the potential snags of an elected presidency - not least in the light of the two apparent contenders in the US. Personally I reckon that we could settle up our national debt by selling off much of the monarchical surplus stuff (houses, jewellery etc) and happily have something more like a Low Countries or Scandinavian monarchy. That might limit the propensity of politicians to exploit royalty and the British sentimental love of pomp, pageantry and pretty things... Just saying!

But seriously,...

Outweighing all that, on the dark side, were the events at Orlando and Marseille.

I first discovered the events at the Pulse nightclub in Florida on Facebook. Omar Mateen, American-born 29-year old, shot 49 people dead and wounded 53 in the deadliest mass shooting in the US in the gay club, where people were enjoying a Latin music evening in what they imagined to a "safe" place. President Obama "said on Sunday the Orlando gunman's motivation was still unclear. 'We know enough to say this was an act of terror, an act of hate,' he told reporters." It sounds to me that it was first a plain act of homophobia, then dressed up or "justified" in the name of radical Islam - not that there can ever be a justification for such barbaric butchery. 

Meanwhile we were hearing commentary about the violence between English and Russian fans at the end of the draw in England's first match in EUFA 2016 in Marseille. Strangely in my view blame on the BBC seems to have been pinned on the EUFA authorities (scheduling the match late in the day), on the availability of drink near the ground, on the French (heavy-handed policing) and on the Russians (specially trained thugs) - but not on English football "fans" lacking in self-control. I do notice a tendency, which I suspect stems from the government, to paint Russia as the villain in every possible scenario: the villains in Ukraine (Who provoked the resistance to the elected government?), in Syria (Who encouraged the uprising against President Assad despite warnings?), in sport (Were they alone in hiding drug-taking in their sportsmen?). It is of course convenient to create a bogey-man of another state. It allows politicians to damn any project they dislike as being favoured by President Putin. Maybe it's not surprising then that English football supporters consider it open season to beat up the pesky Russians.
Vladimir Putin Photo BBC

The latest example of this has been the oft-repeated assertion of the Remain campaign (Philip Hammond, Michael Fallon, Jack Straw and even the hand-shaking David Cameron) that Russia and particularly President Putin himself are in favour of Brexit. The odd thing is that the Kremlin has been assiduously (and infuriatingly) silent on our EU referendum. This morning I heard a Russian spokeswoman quoted in exasperation saying "the West tries to blame us for everything".

Mary Dejevsky Photo Newsweek
To find out the truth I sought out an article by the most reliable commentator on Russia I know, Mary Dejevsky, and found a careful short article in the Financial Times of 2nd June headed, "Vladimir Putin is not ready to toast Brexit". Interesting, I thought. She argues that Russia is in fact most concerned to have stability on its borders, and anything that might contribute to the EU's break-up would be anathema to Mr Putin, whose priority is the nation's security. This is its last paragraph, "The Kremlin has given no hint of any preference. If you chance upon a Russian diplomat in a quiet corner you might find, if not outright hostility to Brexit, then profound misgivings. Which is why, although the western consensus is that Mr Putin is preparing to toast an Out win, do not be so sure. The champagne may indeed be on ice. Whether it is in anticipation of a UK vote to leave the EU is another matter."

I on the other hand am now prepared to declare my voting intentions for 23rd June! I have moved, reluctantly, like Dr Sarah Wollaston, a Tory MP I greatly admire, from Brexit to Remain. I admit to being surprised to find myself on the same side as David Cameron and George Osborne, a power nexus I fundamentally dislike, and very sad not to be on the same side as the straight-talking Michael Gove, Dennis (the Beast of Bolsover) Skinner and Jacob (the Pinstriped Policeman) Rees-Mogg. It came to pass last week. 

I decided to consult my family. It struck me that the decision we're about to make will affect them and their generation much more profoundly and for longer than me and mine. So I contacted them all - seven of them - and asked them if they would mind telling me what they thought about it. Unanimously and without collusion they came back with the same answer in different forms and for different reasons. The reasons were good ones, a mixture of head and heart. To mention but four: collaboration is preferable to competition; the EU institutions mitigate the worst excesses of concentrated power, like that UK and other governments can wield; major problems, such as climate change and economic inequality, can best/only be solved by cooperation; the leave campaign is fuelled by an ugly "anti-immigration, scary foreigners" brand of thinking. Well, it's their future, and I'm not inclined to stand in their way. As I've said before, I don't give much weight to the silly sloganising and soothsaying ping-pong of the politicians and the experts they drag in to support their sides. But I do respect my children's and their partners' views, which are far from silly. So unexpectedly I shall vote to remain in the EU, with the expectation and devout hope that the United Kingdom will at last again actively engage in reforming and reshaping it for the better - which I believe it desperately needs.
Not, of course, that I expect this to make an ounce of difference to my readers! 

PS And now that The Sun, that paragon of moderation and reason, has muscled in on the side of Brexit, I feel confirmed in my decision.

Wednesday, 8 June 2016

Losing your voice

Referendum campaigners suddenly woke up to the fact that many, particular young, people are feeling unheard and disempowered. So last night as the deadline for registering to vote approached the registration website crashed and kept crashing. I heard someone relating how this supposedly two-minute process took them three minutes to complete the first page and then it crashed and continued to do the same thing. I wouldn't be surprised if they'd given up. One might argue that they shouldn't have left it to the last moment. But such is human nature - well, for a lot of us. I must admit to being someone who's worked better to deadlines. Which reminds me, I have an article I must send in this week! It is a shame, however, when people lose their voice needlessly, when what they want to say isn't heard. It's even worse when it happens by force.

In Motor Neurone Disease (or Lou Gehrig's) most people soon lose their voice - literally. Jozanne Moss, my South African co-author in I Choose Everything, described how she wanted to forestall this for her young children. When she and her husband Dave were taking a break together, she recorded DVDs for them which they could play in years to come after her death. (See below.)
This month is MND Awareness Month. One of the aspects being highlighted is its effect on speech, in a campaign called Silence Speaks. Hayley Ladbrooke's account of a week without speaking, which you can read in the link, makes the point. Her father, Robert, has the disease. “I spoke to my dad after completing Silence Speaks to find out how he finds things and he said it’s really hard work and people can turn their back on him. He used to be the life and soul of the party and now people sometimes can’t be bothered to wait for him to talk or they just can’t understand what he’s saying."

Last year I received an email from a young man named Olly Clabburn, who is looking at another aspect of the same symptom, similar to the approach that Jozanne took.

"My name is Olly and I am a PhD researcher at Edge Hill University in Lancashire. My thesis is investigating a therapeutic intervention for people with MND, and how this impacts upon children/young people who care for a family member with the disease, and also children who are bereaved due to MND.  This all stems from my Dad (also a Michael!) and Nan, both having MND when I was younger and me wanting to provide better support for children who are affected by someone in their family having the disease.

"Essentially, my research is investigating the use of a ‘digital legacy’ with people who are affected by MND. This means people with MND creating video messages and recordings of their memories specifically to be given to children in their family to watch and use whilst they provide care, and for when the young person becomes bereaved.  

"I have set up a research page (www.facebook.com/mndlegacy ) and wondered if it is something you might consider including in one of your blogs? I am now at the stage where I can begin to speak to people living with MND who have recorded or currently recording a legacy. First and foremost though, I hope to raise awareness of creating a digital legacy and being a potential project that people living with MND can do for free at home, and also, hopefully help to support some children in the future."

Olly's idea seems brilliant to me, and I hope that he gets a lot of material. My own vocal deterioration seems to have ground if not to a halt, at least to a snail's pace, and people who know me are quite tolerant of my mouth full of marbles. But then I'm one of the few lucky ones.

From I Choose Everything, Jozanne's Diary
We had the rest of the week to ourselves, but this was not going to be just another romantic holiday together.  We had other plans and we came prepared.  From the beginning of the illness I have wanted to make DVDs for the children.  I wanted to leave special messages for them on special birthdays.  I also wanted to tell them what I was like as a child, what they were like as babies, and how much I loved and enjoyed them.  Kids want and need to know these things; I know I did.  I loved hearing from my parents about their childhood but also what I was like as a small child.  I know I probably won't be around to see Luke and Nicole grow up, but I want to make sure that, as a mother, I will still be a part of their lives.

In the beginning I thought that I would make a DVD every now and again, but it never materialized.  I just never felt ready and always put it off for 'one day'.  Lately I have noticed that my speech is starting to change, ever so slightly, but I can feel it – as if my tongue is lazy and gets stuck when I say certain words.  I have to work a little harder when I speak.  People who don't know me wouldn't know the difference, but I know it's starting.  We have decided to make the DVDs now before it's too late.  I want to sound like the real me when I leave my special messages for them.

So on Monday morning Dave and I woke up, ready to tackle this difficult task.  While Dave set up the recording equipment, I made brief notes of more or less what I wanted to cover in my messages.  When Dave was ready it was time to begin.  He started filming…   I didn't feel comfortable at all.  In fact, I felt so self-conscious, I was giggling like a little girl.  Too much nervous energy.  I was trying too hard to sound natural, and instead came across fake.  This is not what I wanted.  Dave suggested that I just chat as though I was chatting to them.  This was a lot harder than I ever imagined it would be and I felt so frustrated.  Dave's phone rang and that broke the tension, but the phone call was to inform us that an old friend of mine's husband had committed suicide.  They have two boys younger than Luke and Nicole.  I was devastated.  No more filming that day.

Tuesday was very different.  This time it was real.  My friend's loss and pain became mine.  When Dave started filming, I started crying.  The thought of Luke and Nicole growing up without me became so real, and I now I had the opportunity to leave them with something, unlike Linda's boys who will never really understand why their father left.  What a privilege and special opportunity I have!  Thank you, Lord.  We made quite a number of DVDs in the days that followed and, although it was one of the hardest things I've ever done, it was also very fulfilling.  It felt like a journey that I took with each one of the kids.  My prayer is that it will be as special for them to watch the DVDs as it was for me to make them.