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.

An antidote to World Cup Fever

No doubt by now my English readers are recovering from Saturday's experience of cold turkey so heartlessly administered by our Australian cousins, and the owners of ITV are vainly trying to persuade advertisers that the viewing figures for future fixtures will be unaffected. And meanwhile some women are refraining from reminding their dearly beloveds that, after all, it's only a game.

The Rugby World Cup, anticipated as the next great sporting event in the country after the Olympic and Commonwealth Games, already shows signs of going the way of all flesh. I suppose the consolation for the RFU is that they have already sold tickets for the potential "hot" matches at vast prices to corporate clients and individuals. The best hope for them and the broadcasters must be that at least one of the home nations comes good and so preserves some great British enthusiasm for the whole show.

The famous tackle on Jono Lomu in 1995 (AP Photo/John Parkin)

Meanwhile it was all put into perspective for me by Miles Pilling who's in the middle of raising cash and awareness for MND with brilliant photographer, Cristian Barnett (26 Miles 4 MND). Miles, like me, has the PLS form of MND. I spent a couple of hours a few weeks ago on a photoshoot with them for their project. He sent me a link to the story of Joost Van Der Westhuizen. I did know about this legend of South African rugby, their scrum half in the World Cup winning team celebrated in the film, Invictus. The championship took place in 1995, a year after Nelson Mandela being elected president of South Africa, and the alliance between Mandela and Francois Pienaar, the team captain, did much to heal the rift left by apartheid.

Van Der Westhuizen's first symptom occurred seven years ago, but it was not until 2011 that he was finally given the diagnosis of Amyotrophic Lateral Sclerosis (ALS), the commonest, rapid form of MND, with a prognosis of two to five years. Last night I watched a series of YouTube clips (a documentary and some interviews) which vividly and painfully illustrate the nature of the disease. Early on he talks about about his determination to fight the disease and to set up a foundation mainly to provide care and facilities for sufferers of MND (the J 9 Foundation) - 9 being the scrum-half's shirt number. Here are three of the clips: A Life of Two Halves, with Jim Rosenthal, Interview with Dr Mol (South Africa), The Rugby Show.

At home with his rugby memorabilia (Gallo Images for ESPN)

I ended by reading an article by James Peacock for BBC Sport, Joost Van Der Westhuizen: still fighting on his deathbed, which, despite its sensationalist headline, is well worth a read. At one point he reminded me of my co-author of I Choose Everything, Jozanne Moss, also a young parent of a boy and a girl, when he says, "'But I know that God is alive in my life and with experience you do learn. I can now talk openly about the mistakes I made because I know my faith won't give up and it won't diminish.

'It's only when you go through what I am going through that you understand that life is generous.'"

You do realise that even for an outstanding sportsman such as Joost Van Der Westhuizen there is much more to life than the glamorous and lucrative world of professional sport - there's his family, there's the gift of being alive, and there's God. There are more important things than winning. There's living.

(PS Apologies for the malfunction of the link to the good BBC article. My fault. It now works.)

Jozanne

I was thinking of blogging about the FA's high-handed taking managerial decisions out Fabio Capello's hands, and England cricketers collapsing, and rugby-players surviving, but sometimes such momentous matters are put into perspective by something intensely personal. And so today sport, and politics, can be forgotten.

The reason is that when I opened my laptop this morning there was a message from Dave Moss, which still has the potential to make me well up. It was the news that his wife, Jozanne, had died. She is one of the most remarkable friends I've never met. I think it was Archbishop Desmond Tutu who described us as an "odd couple". He kindly provided the foreword to the book Jozanne and I wrote together, I Choose Everything, with the sub-title, "Embracing life in the face of terminal illness".

We'd been put in touch when Dr Peter Saunders met her on a trip to South Africa and she'd read my first book, My Donkeybody. A young mother of two and a primary school teacher, she'd been diagnosed with MND a few years after me and mine was the first book written from that situation by someone with a similar faith to hers. I'd been wanting to explore further the implications of terminal disease for faith in a book, and when she began to send me things she'd written for friends out of her experience they seemed to me to provide exactly the practical groundings my reflections needed - and so the book came to be written. Jozanne had a translucent sort of faith which spoke to people of all shades of viewpoint. As Jozanne's decline was quite rapid, we were delighted when the publishers, Monarch Books, planned to publish the book in summer 2010. We weren't sure how much longer she had for this world.

Clearly she was a fighter, and of course she had every reason to remain for her children, Luke (13) and Nicole (11), but now her fight is over, as the prayer beautifully puts it:
Support us, O Lord,
all the day long of this troublous life,
until the shadows lengthen and the evening comes,
the busy world is hushed,
the fever of life is over
and our work is done.
Then, Lord, in your mercy grant us a safe lodging,
a holy rest, and peace at the last;
through Christ our Lord. 
Amen.



She died peacefully with her husband, Dave, and her two children beside her at home. My overwhelming feeling is of the privilege of having "known" her and worked on our book together. They say teachers have a greater influence than they are aware of. Jozanne undoubtedly inspired, and will inspire, many more people than she ever dreamed possible. It's a curious aspect of weakness faithfully borne that it can have such an effect. She had no doubt that her ultimate home was "to be with Christ which is far better", and I have no doubt she is now discovering its truth. My only regret is that I never met this lovely woman in the flesh. However, one day, Jozanne, I trust I will meet you and enjoy your smile.


Finally, a quotation which would fit Jozanne from Charles Dickens, born 200 years ago today:
"Have a heart that never hardens, and a temper that never tires, and a touch that never hurts."

Jozanne's book launch

"In the 4th century Saint John Chrysostom refers to a 'double famine' which impoverishes two groups: the poor who lack provision and the Christians who, in their luxury, lack the mercy of God. 
"Seventeen centuries on..." (Marijke Hoek). 


They knew a thing or two, the old saints. Plus ça change....


Yesterday Jane and I watched a dvd of the launch of I Choose Everything in South Africa, back in the summer. Dave Moss had sent it in the New Year. Inevitably I cried watching Jozanne and her lovely family. She was thin but her smile was luminous. Unfortunately I don't know how to extract stills from it; so I've taken the YouTube picture - not of the event sadly, but of Jozanne when she could still mutter words. Nicole played the piano, Luke the guitar (classical) and Dave gave a moving speech quoting Archbishop Desmond Tutu's foreword. "Jozanne’s Diary in particular lets us see, in painful intimacy, the grievous prospect of losing everything and everyone she holds dear. And yet, everything isn’t lost. That’s the wonderful certainty that God gives his children. We’re all part of his plan. We are all part of his family. Ephesians says, ‘God chose us in Christ to be God’s children before the foundation of the world.’ We didn’t have to do anything. It was given freely and our worth is infinite. We aren’t an after-thought. Isn’t that beautiful?? We aren’t an accident. Some of us might look like accidents. But no, no one is an accident. Isn’t it incredible?"


People sometimes ask me how Jozanne is now. The last time I heard she had lost all independence, was being fed through a PEG line (direct to the stomach) and was having breathing and pain relief. But was still drawing encouragement from the positive reception of her writing and joy from her family. And she's still able to smile. 

In retrospect

We’ve had a glorious week in South Devon, up a muddy bendy lane, in a warm converted cowshed overlooking beech trees and a trout-stream valley. What a full few days! I'm getting used to the idea that even in retirement holidays are worth having.

The view from the cottage was great, with the autumn leaves just clinging on for us despite the westerly winds. I didn't notice the pylons; the nearby wildlife was a lot more interesting. I reckon there were blue, great, coal and marsh tits, as well as greater spotted woodpeckers and nuthatches on the bird feeders, green woodpeckers, pheasants and squirrels in the garden - and Jane counted 14 herons in the field across the valley. Then at night the trains down in the dip would pass back and forth with the lights of their carriages on. 

On the Sunday we made for Exmouth to seek out Christ Church - the home church of some New Winers we met this year. Though the people we'd got to know best weren't there, we received a great welcome. The worship and whole service was led by young people. Excellent. I can even remember the 'talk's' three points still: we need consistency, cooperation and confidence in following Christ.

 After that we drove down to the estuary where Jane walked Jess to the river, while I discovered the car of the third in line to the throne, as I deduced from its registration K1NGH. In fact, when it passed us later, it contained an elderly couple (even older than us). We moved on to the promenade which was remarkably busy for a cool autumnal day. Dog-walkers, kite-fliers, promenaders, and even kayakers. It was of course sunny, and actually we joined the procession on the prom. Lovely.

I won't bore you with a blow-by-blow account of the week: Seaton - overrated but nice clifftop garden; Jane's parents - impossible to overrate; Axmouth - brilliant picnic by another estuary and lots of waders and seabirds (curlew, little egret, redshank, sandpiper et al); plus a visit from my favourite journalist, walks for Jane in the area with the dog, the autumn colours, blue skies, and evenings watching 'Poldark'...! I came home reflecting how fortunate I was still to be mobile enough and able to enjoy such a beautiful place and how blessed we'd been with bright November weather.

In my inbox, among the emails, was on from my co-author, Jozanne. I don't think she'll mind my quoting from it:

"Since my last mail, I have regressed considerably. I am no longer able to use my computer and spend most of my days in bed. My body is weak and my breathing is very shallow. I have lost most of my muscle mass and probably weigh between 35 & 40 kg's. I am on a 4 hourly dosage of morphine which brings me great relief from the pain I have been experiencing in my neck and shoulders. I am not able to eat anymore due to the weakened muscles in my mouth and swallowing process. I take all my feeds through a tube in my stomach. I am completely paralysed and I am grateful for the two full-time caregivers that assist me during the day and for Dave who helps me at night.                                                                                                                                         

"My greatest challenge now is speech and communication. This is very frustrating for me because I can no longer verbalise any words. It is difficult for me to express how I feel or what I need and also for those around me to understand what I am trying to say. We do seem to find ways around this but with much difficulty and effort.

"Despite all these challenges God has been so faithful to us. He daily gives me the strength to carry on, but not just that, He fills my life with joy as He reveals Himself to me more and more everyday...." 

That's the reality of MND for all but a few.

David & Grace (Liverpool Echo)

And then there were two about my cousin, Grace Sheppard. She has been having treatment for widespread cancer. Last month, six years after her husband David had done the same, she preached at Liverpool Cathedral's Pause for Hope service. It's for cancer sufferers, families, carers and medics. One email told us she was in the hospice; the second that she had died, five years after David. Only a few months ago she'd stayed with us. She was, and is, a lovely person. I shall treasure her book, Living with Dying, which she inscribed for us when she was here.  http://www.liverpoolecho.co.uk/liverpool-news/local-news/2010/11/12/bishop-s-wife-grace-sheppard-dies-after-cancer-battle-100252-27646634/

Finally there was the news of a new Wenham born into the world, daughter to my nephew and his wife - with the nice name of Marianne. And I also saw, with delight, an entry on Jill McCloghry's blog that after 35 weeks she's still carrying her baby girl. You may remember the extract I included in I Choose Everything from her blog of her months of agonised grieving after the loss of her first baby, Max. She's another remarkable woman of faith.

Done but not yet dusted

Well, I Choose Everything - first draft - is complete.  I've sent it to Jozanne to see whether she's happy for it to go to the publishers.  I think it's quite interesting.  Actually I'm more enthusiastic than that.  I reckon it will be really helpful for Christians understanding illness from the inside.  To celebrate finishing we made for the Cornerstone and broke our Lent fast (already) with some mallow tiffin and coffee.  To offset that I also bought the Archbishop's Lent book, 'Our Sound is our Wound' by Lucy Winkett.  I enjoy her Thoughts for the Day on Radio 4.  She's Precentor at St Paul's Cathedral (or something like that), which means her expertise is singing - she was trained as a musician.

Talking of musical talent, today I was sent a YouTube link about Patrick Henry Hughes.  I'll not spoil it for you, except to say it's a remarkable story of a father's love and of unforeseen potential.  It should also be a warning against writing off any handicapped baby. (http://www.youtube.com/watch_popup?v=9xwCG0Ey2Mg)

Code-breaking and book-writing

Some Bletchley Park codebreakers were presented with commemorative badges today by the Foreign Secretary to mark 60 years. Readers of my blog and of 'My Donkeybody' may remember that my aunt and godmother worked near the heart of Bletchley Park during the war. She received her veterans' badge a few years back, which she was pleased about. She died earlier this year, and I inherited her badge, which I'm quite proud of. There's going to be a roll of honour at Bletchley Park for the codebreakers who've died - most of them. So if you go there look out for (Diana) Susan Wenham in the list. (http://news.bbc.co.uk/1/hi/uk/8300099.stm)

Talking of books, my proposal for another one was considered by the editorial board of Monarch, the publishers, on Tuesday. My idea was to write it in conjunction with Jozanne Moss, the mum from South Africa who has MND. She's written about her experience and her faith, and I wanted to add some reflection about the Christian understanding of illness. I'd sent some sample chapters and an outline to my editor. We held our breath.... Happily the board was enthusiastic about the idea, though suggested rejigging the structure. In a way, it's back to the drawing board for me, though Jozanne's story should remain fairly intact.

Beards, bishops, booty and books

Pat suggested that vicars wear beards because they are too hard-pressed to spare the time to shave. Sounds to me a bit like gardeners cultivating weeds because they don't have time to do the hoeing! Heard the Bish of Oxford on the radio this morning: he's another bearded one, I thought. Jane soon set me right. The only local bishop currently with a beard is Bish of Buckingham. Anyway I thought I'd do a bit of research, and so looked up the group photos at the Lambeth Conference last year. The one of the lot of them was too small, but a sample one showed about a fifth of them with beards, and in the middle one (nearest Archbish Rowan...) I counted 12 beards out of 26. Either way it's a seriously high percentage. So... if you're aspiring to being a bishop (for some weird reason) maybe facial hair's a good move. Meanwhile, I'm still able to shave myself - thank God.

This weekend there's a rally just up the road from here. There are flourescent pink signs to it, but none of them say what it's a rally of. Jane was walking the dog round the fields yesterday and reported hordes of people scouring the ground with metal detectors. So I googled and lo and behold, came on the Weekend Wanderers Detecting Club, who are holding a rally on 19/20 on 1000 hectares just north of here; I think the rate is £10 a day. No doubt a record of any finds will appear on their website in due course. I'm sure it's a fascinating and at times rewarding hobby. But I'll not give you the link, because, to be honest, I wish they were looking for treasure elsewhere 'where neither moth nor rust corrupt'. So many people look for treasure which, frankly, isn't worth it, like the millions spent every week on lotteries, whereas I could take them to real permanent treasure which you don't have to pay for (except with yourself). In fact if they'd come with us today to Millbrook School they'd have heard about it.

Meanwhile my and Jozanne's book is shaping up. She has written some amazingly deep and vivid chapters arising from her experience, while I'm trying to reflect on the theology a bit more. By the way, if anyone knows if Woody Guthrie's songs are in the public domain (other than 'This land is my land' for which he wrote an idiosyncratic copyright notice!) and if not who holds the copyright, I'd love to know.