London 2012

On 6th July 2005 I attended a yoga class and then did my weekly food shop as usual. After loading the car I turned the ignition key and the radio came on, just as the announcement was being made about the location of the 2012 Olympics. I held my breath and stayed listening in the car park until it was announced that London, my adopted home town, had won.

Fast forward 24 hours and the city was reeling from the aftermath of the 7/7 bombings. The gloss had been taken off the previous day's announcement and from then on in the Olympics has seemed low key and, in the current financial climate, an expense and inconvenience Londoners could do without. There no longer seemed to be any excitement and we didn't even bother to apply for any tickets. It was only last week that I realised exactly how close the Olympic Park is to where we bought our first home 25 years ago.

But over the last weeks, with the torch procession, everything seems to have slowly changed. Son 1 saw the torch in Maidenhead a couple of weeks ago, as he knows one of the torch bearers there. Three days ago it passed just a mile from our house and he saw it again. I would have loved to observe this once in a lifetime event but am not strong enough to stand for ages, especially in the recent heat.

Yesterday the building excitement culminated in a magnificent opening ceremony. It was quirky and very British, packed full of so many historical and cultural references that I think it would take many reruns on iPlayer to pick them all up. It portrayed Great Britain in all its tolerant, multicultural glory, even including a tasteful tribute to the dead. And who could fail to love the parachuting Queen and Mr Bean in Chariots of Fire? Or the unique cauldron?

I wonder what the rest of the world made of Danny Boyle's spectacular love letter to his country. I hope they liked it as much as we did.

Another legend gone

The last few months have been full of nostalgia.

There have been numerous television programmes about the 1970's, the decade in which I was a teenager. I'm currently watching 56 Up, the latest instalment of a series which which has followed a group of people from the age of seven. Although the participants are a few years older than me, the film clips are so very familiar, making me wonder if I ever looked and sounded like that too. The answer is, I think, yes. I can't help comparing how different we were back in the 70s to teens of today.

Then there has been the demise this year of three mighty pop legends of the 70s and early 80s, which has led me to rediscover their music on YouTube.

RIP Robin Gibb.

Two little letters

What do the letters MS mean to you?

Microsoft? I think we will all recognise that one.

Manuscript? Many of my writer friends will relate to this.

Or multiple sclerosis? How many people really know what this means, I wonder. That question hit home the other day, when I had to explain my hidden disability.

Right from the beginning I've not been shy about my diagnosis. After all, I did announce it online and I've subsequently written an article about it. This approach would not be right for all, especially people whose employment might be put in jeopardy, but I'd rather that people knew that the underlying reason for wobbliness or occasional slurred speech is illness or MS fatigue, rather than assume I'd had a surplus of alcohol.

On Monday I took the bus into town to shop. I had a number of errands to run and was tired even before I started out. Waiting at the bus stop a lady smiled at me, but we didn't engage in conversation. Later that afternoon, when I was too exhausted to walk any further and the rain had started, I headed for home. On my bus I found the same lady, who pointed at the disabled seat next to her.

"I saw you in Marks & Spencer," she said. "You looked as if you were in pain."

I explained to her that I have multiple sclerosis, that walking is very tiring and can be painful due to stiffness and spasms, which aren't always well-controlled by my medication. I joked that on that afternoon I'd staggered from one bench to another and she said she'd often seen me out and about locally, walking at my very slow pace.

It was a bit of a conversation killer, to be honest. Most people don't have much idea what MS is like, especially in the earlier stages. The fact that each person with MS is affected in different ways doesn't help either. Before I was diagnosed I had imagined that the majority of people with MS were in wheelchairs, but that is definitely not the case.

We both got off at the same stop. My lovely fellow traveller, who looked considerably older than me, shot off at high speed, while I made my way slowly and painfully home to crash out on the sofa.

Checking in

I'm still here.

I haven't posted for almost a month. There is no excuse, except that I have been insanely busy and my creative juices seem to have dried up. My caring responsibilities have increased over the last few weeks, with a knock-on effect in the form of physical and mental fatigue. I'm sure I'll get used to it in time, but for now there don't seem to be enough hours in the day to fit in everything I want and need to do, whilst still trying to comply with doctor's orders.

I'll be back just as soon as I have something more interesting to say.

Tiptoeing into 2012

I'm not keen on New Year resolutions. You know, the sort where you pledge to give up something or lose a ridiculous amount of weight in next to no time. They are the sort which you break almost immediately and then cause you guilt.

But I have been taking a look at my life and how I can better prioritise in 2012. The last few months of 2011 have been a rollercoaster, from a desperate low to a fantastic high and back to low again. It's not been easy and some things had to give, mostly my creative writing, which made me sad.

In terms of writing, my currently small scale commercial work has to take first place, as it reliably pays. I then intend to concentrate on short stories for a few months, whilst I further flesh out my plot for novel two. Having already made one false start on novel two, I've had to go back to the drawing board, and will eventually start to write again in a different genre, with a different main character and more plot points on the scaffold. But I'll get there, I really will.

I also need to start sending Walking on Tiptoe out again. It is currently out with a few agents but I suspect that the silence from two of those can by now be construed as a no. I think that this will be the year when I start sending it out to indie publishers, whilst also looking into electronic possibilities. I'd love to see it on the Kindle one day, but if I go down that route I'd probably need help with the cover and formatting, which is fairly complex, and I don't have the funds to invest right now.

2012 promises to be an interesting year for the boys. If all goes to plan we will be waving Son 1 off to his first choice university in the autumn, whilst concurrently making plans for Son 2's future. This is likely to be less straightforward.

I have a secret project, which I hope to start working on quietly in the background during the year, building perhaps towards something for the future, when the nest is finally empty.

Last, but definitely not least, December has shown me that I need to take even more care to preserve my health. I'm doing okay, but there is still room for improvement, still a need to be more selfish sometimes and take a little more time out for myself. Recently I have felt as if I am spending almost every waking hour either caring or working (I include thinking about work here!) and my body is telling me that it can't continue. It's difficult to balance Hubby's ad hoc work against my needs but obviously the guaranteed money has to take priority at times.

So what are your plans for 2012?

Thirty years on

This time last week I travelled into the West End to meet up with six friends from university. Two I hadn't seen since our graduation day almost thirty years ago, others I hadn't seen for at least seven years and the last meeting with some of those was sadly at a funeral.

It was a reunion which grew out of a chance comment on Facebook and an effort to get in touch with the fellow students for whom I still had contact details, some of whom then brought in others. The only thing we all have in common is that we studied single or joint honours German at The University of Reading in the same year group. But it was amazing how we immediately fell back into easy conversation. Someone brought along the departmental photo (which I'd missed as I was at a job interview) and time was spent trying to recall the names of other students and sharing anecdotes. I was glad to discover I was not the only person who struggled to put names to the familiar faces in the picture.

Some of those present had lived in my hall of residence, others spent the year abroad in the same location as me. As well as the memories we talked about families, jobs and our fears that some of our children will be going out into the world during a recession, just as we did. I wonder if our career paths might have taken different courses if that had not been the case.

Whether or not we ever manage to get together as a group again, the afternoon was life-affirming. It showed that most people's lives don't follow the path they had expected, yet we have all survived. And it proved that friendships based on shared experiences never quite die, however long they are neglected.

Pink October

I'm sure you are all aware by now that October is Breast Cancer Awareness Month and right on cue, today I had to go for my first routine breast screening mammogram.

I did have a mammogram two years ago, when I had a cancer scare, so the procedure was familiar. I knew it would be slightly uncomfortable so I swallowed a couple of paracetamol in advance and was in and out of the screening trailer in less than ten minutes. By the end of October I should have the results.

Breast cancer charities are a cause close to my heart. About a decade ago I knew four women, who were all diagnosed with breast cancer within the space of a couple of years. All were mothers in their prime. Two of them are no longer with us.

When my close friend and godmother to Son 2, K, was diagnosed with breast cancer I bought a lovely pink ribbon brooch sold by QVC in aid of Breast Cancer Care. It was sturdier, and more expensive than a breast cancer pin. When K sadly passed away 7 years ago, following a recurrence of the cancer, I wore the brooch to her funeral. I pinned it to the soft pink sweater I was wearing under a black leather jacket. I remember fiddling with the brooch when we stopped in a service station on route to the funeral. By the time we moved with everyone else to the pub, following the burial, it was gone.

I like to think that it fell off in the graveyard when K's husband fell into my arms for a hug as we shared tears together. I want to believe that it is still there hidden in the grass, bringing me closer to K, my friend through university and beyond.

Every year I try to support a breast cancer charity in memory of K, who inspired me to take my writing seriously. If you do just one worthy thing this month, please consider doing the same. Buy a pin, or any one of the special breast cancer items which many high street stores and charities stock. Give a money donation to any cancer charity, if you prefer.

Breast cancer affects so many, men as well as women. It could be any of us next time, but I'm hoping that the test I had today will be clear.

The brooch pictured above, which I may well buy for myself, is available from Breast Cancer Care here.
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Taking a brief break

Every so often my time becomes consumed by unexpected events. This is one of those occasions and I'm being stretched in too many directions to have the energy to blog.

So I'm taking a brief break. I shall be back shortly, hopefully refreshed and with lots of new ideas but in the meantime I'll still be reading your blogs.

See you soon.

Festival fever

Seeing excitement on Twitter and photos on Facebook of the Edinburgh Book Festival reminded me of the only time I've been to Scotland. It was 20 years ago, I was six months pregnant and we spent a few days in Edinburgh before going to stay with my sister in Falkirk.

We loved Edinburgh. We took in the sights and I managed to climb the hill to the castle, but we spent most of our time at the festivals, watching comedy shows and visiting book tents. We went to one literary event, a discussion about female sleuths between crime writers Antonia Fraser and Sara Paretsky, who was one of my favourite authors. I still have my signed copies of their books.

We left Falkirk swearing we'd go back soon. But just six weeks later I gave birth prematurely to Son 1 and not so long after Son 2 was born my sister and her family moved back to England. I never got to go back, to either Scotland or the Edinburgh Festivals.

But I will. Maybe next time as an author.

Liebster award

A few days ago I was honoured to receive a blog award from Miriam. You can read all about the Liebster award on her blog.

I'm supposed to pass it on to five bloggers I consider to be friends, but you are all very lovely and I really can't choose from those on my blogroll and more.

So if you'd like it, please help yourself and read how to pass it on yourself over on Miriam's blog, where she has described the purpose of the award so beautifully.

(Yes, I know I'm being lazy. And it's just reminded me that I really must update my blogroll...)

Going back in time

Today I went to visit a university with Son 1. Not just any university, but the very one from which I graduated 29 years ago, almost to the day.

We went with Son 1's girlfriend, one of her friends and her mother, A, who by coincidence also studied there, a year behind me.

For A and me it was an exciting day, a trip down memory lane. Whilst there have been considerable changes for the better over the intervening years, many familiar landmarks awaited us and I think I can say we both fell in love with the place all over again. I remembered all the good times and conveniently forgot the occasional heartbreak, perhaps she did too. And most importantly for me, Son 1 fell in love with the university too. He could see himself there and I think it may be a dead cert for his UCAS application.

As we looked round the sparkling new function hall in the Students' Union I couldn't help remembering some of the bands I saw in the tatty old place. Here's The Tourists (the precursor to the Eurythmics)

A confidence boost

This week I spent a day working with student health professionals at a London university, talking to them about what it is like to parent a severely disabled child. It's something I've done for a number of years now and every time I come away feeling enthusiastic about the potential those first year students have to become caring and understanding practitioners in the future.

But these days out don't just benefit the students. They remind me that I was once a professional myself, that I did training of student accountants, that I actually had a workplace other than my own home. They remind me also of why I was glad to give up commuting into London each day, even though on this occasion my fellow speaker and I were able to travel at the very end of rush hour and missed the worst of the crowds. This year, for the first time ever, we avoided changing trains at a busy interchange and instead rode on a couple of stops to a smaller station, with the aim of getting a bus to our final location rather than walking. I'd researched bus routes in advance and it all went like clockwork.

The journey reminded me that when we lived in inner London I frequently used buses. I still do out here in the suburbs, but I'd taken to only using the underground when I travelled into town, walking whatever distance was necessary at the end, because the number of bus routes was confusing and I wasn't sure where to get off. Now that I can only walk relatively short distances before I need to rest, a trip into London was becoming an increasingly daunting prospect and sometimes I found my anxiety led to excuses not to go.

I was so out of touch with bus routes that I'd never really considered the power of the internet. Using Google maps and the Transport for London website it really is possible to plan any bus journey with a degree of confidence. I think I'll be making more use of the buses next time I venture up to town and I hope it will give me the confidence to spread my wings a little further again. I'm not just the mother of a disabled child, I'm a writer and I want to be able to develop that side of my life even more over the next few years, without being limited by my own physical weakness.

Hardest Hit

Yesterday thousands of disabled people, their familes and carers marched to Westminster to protest about the proposed changes to disability and sickness benefits, which are likely to plunge many into poverty and a housebound existence. There was a distict lack of media interest in this already vulnerable and disenfranchised group, but you can read a Guardian report here and a BBC report here.

Today it is reported that research by Carers UK indicates that carers save the country £119bn a year, often at a huge cost to their own health and financial security.

It made me wonder what would happen if all we carers suddenly decided to show the same lack of respect for the sick and disabled as the government clearly does. I had hoped that David Cameron might show just a little compassion and empathy in this area after his own experience of parenting a profoundly disabled child. I was clearly wrong.

Realisation

Sometimes something unexpected happens to change the course of the life you had imagined, but you don't understand why. Over the years you slowly rebuild, discovering some pieces of the jigsaw along the way, but there is always one missing and you still don't fully understand. The ensuing self-doubt permeates everything you do, if you let it.

Then, thirty years later, the country is focused on something else and suddenly there is the missing piece. It had been in front of you all the time. You finally understand that the original event was never just about you and you wish you'd realised sooner. You wish you'd reacted differently back then.

But you've also long known that it was probably for the best.


(Yes, I am being deliberately cryptic and today the world is preoccupied with something different, but I'd already drafted this post...)

Testosterone

So Hubby is away for a few days. Son 1, as befits a teenager on holiday, has been out a lot, while Son 2 has been calmer and sleeping better. Although he has still woken at around 2am, for the last three mornings he has been happy to go back to bed and drop off to sleep again, to wake at a fairly acceptable hour. He is still jumping on his trampoline, but not with the manic level of activity we've seen over the last few months.

Anyone else spot a pattern here? Perhaps Son 2 feels that just for once he is the top male rather than the bottom of the pile. The level of testosterone in the house as they battle for supremacy is usually overwhelming and I think it has a lot to answer for.

Why, oh why, did I not have daughters?

The death of a bookshop

On Saturday I wandered, possibly for the last time, into our local branch of British Bookshops. It's a shop I've browsed in almost weekly, a shop in which I've purchased not only books, but cards, magazines, stationery and craft materials. It's closing down later this week and a crowd was picking over the discounted stock.

Further up the street a more recent arrival, crammed with what appears to be mainly remaindered books, is also announcing impending closure. In the village a few miles up the road one of the two independent booksellers closed some time ago to make way for a coffee shop. The remaining bookshop is tiny and whilst it is no doubt good for ordering books, somehow I don't find it inviting for browsing. There's not enough choice.

That, I suspect is the key to this. We've all become used the the huge choice of the online booksellers, to getting exactly what we want rather than what happens to be in stock or what we've heard of. Through Amazon we can even peek inside many books or download a sample on to a Kindle, we can try before we buy just like we can in a bricks and mortar shop, but in the comfort of our own homes.

As a student I worked in a bookshop and I know that experienced booksellers are incredibly helpful and knowledgeable. But I wonder if the online community is gradually taking over that role via social media. My own Twitter stream is crammed with tweets by readers, writers, bookshops and publishers and I regularly read book blogs and other reviews. Because I now find shopping more physically difficult I'm increasingly reading books I see recommended, rather than random discoveries in a shop. I used to love Borders before its demise in the UK, but I'm no longer sure I want to walk around such a big store. My shopping has become more targeted.

We can still buy books here. We have WH Smith and a small branch of Waterstone's and perhaps, in the current economic squeeze, that will suffice. Books are sadly becoming a luxury item for many people, as are magazines, and yet libraries are threatened with closure. That doesn't make much sense to me.

And I'm very sad to see British Bookshops disappear. My Saturday afternoons won't be the same.

The fear

Sometimes the fear gets to me. The fear of whether this is it, whether we have actually achieved all we are going to in our lives. The fear of how we are going to support ourselves financially up to and beyond retirement. The fear that with the savage cuts in services that are taking place there will be no appropriate care and support for son 2 when he leaves school and home. The fear that son 1 is never now going to have the opportunities that we had.

Most of the time I try to keep the fear at bay. I keep writing and hoping. I grab at occasional small ad-hoc work opportunities which arise and I tell myself we are lucky, we are not in debt and having a severely disabled child at home does bring in a reasonable level of disability benefits and child tax credits. Most are probably not so fortunate.

Recently Hubby met up with some old friends, there were four men in total in their mid-fifties through to early sixties. All are now sadly unemployed and of them only Hubby is signing on, even though he no longer gets Job Seeker's Allowance. If this situation is typical then unemployment figures must be seriously understated and there could be many people just scraping by on the savings they were wise enough to make in better times, not wanting to suffer the indignity of the Job Centre.

I know so many others whose jobs are currently under threat. When I wake early, suffering palpitations, I tell myself we are not alone. No one is safe any more.

2010

What a year it's been. Like most people, I guess, for me it has been a year of contrasts.

On the positive side I completed a novel. I thoroughly edited that novel and started to submit it to agents. I am using a slow targeted approach to my submissions so it is likely to be a long process. I made very few submissions of short work in the year, but Even More Tonto Short Stories, containing one of my short stories was finally published and I had an article on Powder Room Graffiti, a website I hope to write more for next year.

On the negative side it has been a year of trying to come to terms with new physical limitations. I know that I am lucky in that my MS is, as yet, relatively mild and I didn't suffer another relapse in the year, but the limitations are real, often painful, and frequently changing. Add to that some unrelated medical symptoms that still have to be fully investigated and some medication to trial and it is a period of uncertainty.

The boys have both had a very successful year but we are still existing under huge financial constraints, a situation which looks unlikely to change in the foreseeable future. Christmas therefore had to be a somewhat muted affair, which ended up with the washing machine dying in a somewhat dramatic fashion to round the year off in style. At least I've managed to order a new one before the VAT increase hits!

Wishing you all a happy and successful 2011 and just a reminder that from tomorrow I shall be taking part in a river of stones. I shall be writing my small stones as separate posts on this blog to enable them to be picked up as part of the project, but normal posts will continue too.

A Christmas greeting...

...from Son 2.

We don't really do religion at home, but this year, for some reason, he is obsessively listening to 'Angels We Have Heard On High' by the Westminster Cathedral Choir, which is on an album of Christmas songs I bought some time ago. So I just thought I would share:



This Christmas I shall be keeping in my thoughts the friends who are currently going through very difficult times (there are several of them) and the homeless trying to survive in this weather. I shall feel grateful for everything I still have.

Have the best (white?) Christmas you can, despite the UK weather chaos, and see you all on the other side.

Blogging times change

I started this blog in October 2006. Yes, four whole years ago.

I was full of enthusiasm. I'd just finished an Open University course and was about to take my writing more seriously. Life had just thrown us a huge curveball, but it meant that I would be at home much more, that I had time to write.

I couldn't have imagined then that I was already into the most challenging years of my life. Years which have been documented, in a censored fashion, on this blog.

This blog is both a record and a painful reminder and I'm no longer sure whether I want it all to be so public. The internet world seems to be changing. We appear to be losing enthusiasm for blogging. Communities built up over a number of years seem to be dying, or pulling apart in a destructive manner. Perhaps it's something to do with the recession or maybe, with the explosion of social networking, we are all just realising that we have been too open in the past.

What I'm trying to say is that I'm no longer sure where this blog is going. I think at some point soon I shall be separating my writing posts from the more personal stuff. I've already started to create a new writing blog which will become the one linked to my website and will be solely about books and writing. I may eventually mothball these ramblings.

Whatever I decide to do I'll be sure to keep you all posted, if you'll forgive the pun.