Monday, 30 June 2008

Virginia is such a heroine!

No, not really. Obviously. Never. It’s just that some of you will remember the post I put in entitled, ‘Tom is such a hero...’ and this, relating back to that piece, is where I show how even then, actually, I wasn’t doing too bad a job either…

You see, that tribute to my gallant son, was all about a power-cut. And how he trudged home one night shortly after it, laden down with one Army Survival Kit (and a few other things for Lucy) that his poor I-can’t-cope-with-freezing cold-no coffee-first-thing (or from him: “neurotic”) mother ordered after vowing never to go through that hell again.

And hell, to me, would be cold. (Most of you know, I’m sure, that the body thermostat of an MSer is completely defunct. Which means that we’re all either suffering from too much heat [often manufactured by and only inside our own bodies] or shivering from a cold no one else necessarily feels. It follows, of course, that any real extreme in climatic temperature causes us much discomfort and, often, downright embarrassment.)

Hot and dry for me is best (I felt light as air in Italy when Tom and I were there a few summers ago). Cold and damp is, life-threateningly (Candida Albicans – see MS – My Scene [Oct. 07]) worst.

Anyway, as I explained in ‘Tom is…’ I got rid of the gas supply in this place years ago (various reasons – not least, the disruption and stress caused by the [don’t be libellous!] council gas maintenance operatives.!) and ever since have kept warm and dry with, all-electric, heaters, a de-humidifier, air-purifier and fan (the last for when there’s too much heat obviously, i.e. July!). Very expensive. Not good in that I’m abetting the depletion of the earth’s natural resources. But, I’m afraid, for me – at this stage in the MS where I can hardly move/exercise – vital. A power-cut (especially that last one, in the month of January, starting before dawn and lasting eight hours), without Tom being an absolute hero, could well have killed me (please everyone keep an eye on your elderly/infirm relatives and neighours – at all times).

So - never getting over it - I thought, I did my research (Google!) and I (?!) came up with: the afore-mentioned, life-saving, Army Survival Kit (gas-cartridge heater, cooker and lamp - even ‘recommended’ for use in power-cuts!). Bellisimo! I felt relatively (as long as I could work it!) safe and self-sufficient. No more to be afraid of the dreaded black-out/blood-freeze of eratic modernity.

It was the best £50 I ever spent.

But guess what? Everyone (Tom, his colleagues [the day the heavy box arrived at his office] and brother, Blob, all laughed at me! Laughed!

Hah! At me, a poor, skinny, immobile MSer, trying to plan ahead, pre-empt, [to quote the boy-scouts] “Be prepared!” for the future.

All right, not very optimistic. But, realistic? Oh yes. And sometimes optimism must give way to realism

Because guess who wasn’t laughing on Sunday, June 8, when it happened again? And guess who – nearly – was?!

Some of you probably caught it in the news: three hours (for some 12!), following a fire at an EDF sub-station, no power for a large part of south-east London. And I bet some of you lovely empathising friends of Travels thought of us. Lucy and me, struggling away in the thick of it all (I mean the MS as well of course!). Thank you – it’s always good to think of you at these times.

Anyway, mercy. The Good Lord had guided Tom here, late, the night before and he was up and dealing with it all, and a hero one more terrific time, before you could say: “Oh shit!”

I had coffee within moments, the large calor-gas fire (the original) was lit and the little lamp sent out a warming, family-in-a-crisis-loving-each-other glow over the whole scene.

Lucy even came running up to my bed first-thing and licked my face as if she hadn’t seen me for weeks (bless her, she must have sensed things weren’t right!). Then, in her element, she lay in the middle of the floor and our legs as Tom and I sat chatting (?!), awaiting the return of the anti-social (computers/TV, etc.) electricity.

So all-in-all it was quite a lovely power-cut! No wonder we all harbour a secret (?) yearning for rustic simplicity (and I bet I’m not the only blogger who’d like to “time-travel back” to writing with a feather quill and oil-lamp/candle!).

Well, there, we made it. The reason I feel free to title this post, ‘Virginia is such a heroine!’. We, alone, know quite a few people who wished they had had our brilliant survival kit. So, for all of you, for the future (in case you haven’t got one), here’s the link to the Army Surplus site I went to.

Be safe!

Oh and P.S. the irony of the whole thing: I don’t have the strength in my fingers to operate any of it now. Thank God for Tom (or, as he says, “a strong carer”!).

Thursday, 19 June 2008

The day we owned a castle [or: 'Castles in the air - but why not?']

TOM’S IMPRESSION OF “CASTELLO ********” [Original photos and names withdrawn as permission for use not given – see last post.]

It was a Friday. What a day! What excitement - for hours and hours. No one was allowed to spoil it. A blanket ban went out on any bad news, depressed behaviour and/or negative thinking.

No barking or whining would be tolerated - either from human (Tom’s day off) or animal - and any occurrence of same would render the culprit liable to banishment from the kingdom. They would be deemed unworthy.

For that day (at least in diggle-daggle flights of fancy), I owned a castle.

Now I hope, dear friend, you know I’m not stupid. Cracking-up, given the circumstances of MS and - apart from Lucy - too much time spent physically alone? Well maybe. You’d be forgiven for thinking that. A little unrealistic sometimes? Too optimistic? Oh yes, definitely, thank God! (They’re good qualities aren’t they?) But stupid? No. I’m pretty sure, not.

No. I “owned” a castle, because I saw one on an Italian Real Estate site (“**** ** *****”.com), costing [quote]: ‘Euro € 0.00 Approx US Dollars $ 0.00’. FREE!

And it was so beautiful (is – it’s still there!) and in my very favourite part of the world – Umbria. Near Gubbio where Tom and I visited once when staying in Rome, because it had become my favourite place in brochures.

Well, what was I bound to think?

No, no, I’m not stupid (remember?!). I know that just because something is wrongly priced doesn’t mean you can have it at that price [though I’m sure the law has changed since I worked in shops, many, many moons ago]. Tom - who, of course, works in retail - was quick, despite my “ban”, to point that out.

But there’s always hope, right? And there are always miracles (oh, there are!).

And, at the very least, there are opportunities. This was what I call a God-given opportunity for day-dream, escapism from the pain and tedium of an MS life (and why I knew I was justified in calling this blog ‘Travels’ with Lucy’). And I grasped it.

This beautiful, fabulous “Castello ********” was built (c. AD 900) for me! I would send them an inquiring email, before making an offer. I needed a plan.

Well, by now, Lucy, and even Tom, were beginning to enjoy the “buzz”. It was a change to see “Mummy” exhilerated. She was even walking without complaining, almost marching. Regal, confident. It was reminiscent of when she launched herself out the door, business-suit on, briefcase in hand to quizz some politician somewhere. In the old days. Pre-forced diagnosis and enforced resignation. There was still life. And determination.

Lucy, of course, hadn’t known that time, but she was happy to see her owners happy. And benefiting – everyone kept giving her Kibble and forgiving her every misdeed. Mummy, especially, kept cheering her on: “Lucy, we own a castle!” “Oh. Lucy, you’ll love running around there with all your friends!” “We might even throw you scraps from the table!” (Something we’d never do in reality!).

And so it went on. It was fun.

And it grew. I got an instant reply to my email: ‘Grazie’. My message was copied and it would be sent to the local (Perugia) estate agents (“*** *** *****”). I worked on the ‘what we would do with it’ plan and decided to forward the details of same on the Monday. If I hadn’t by then been turned down flat.


Is it me? Is it MS? Is it other people wanting to burst your bubble? Or, is it just life, that won’t let these good times (even imagined) go on for any time? I don’t know. Probably the fatigue thing again, or the spasm I wrote about, or household worries; but, anyway, something got in the way and a week or so passed without me going any further with my castle ambition.

Perhaps it was just the recognition that this situation was so far removed from the dream.

However – not to put a good man down – the estate agents did send a brochure, with a note inviting me to visit and view. And, quietly, in a corner did quote a price. No reference to the former real estate site where il castello was absolutely free. Just a price, pure and simple, no fuss, no fanfare or decoration – hardly in keeping with the aristocratic stature of the property – naked and ultra-modern: Euro € 4000,000!

Ha ha! Just over £3000,000 [3 million]. Oh well...

And yet, here I am again (weeks later now), dreaming still. Because, what good, life without it? At the very least, as human beings, we must hope to always be able to imagine. It’s the only way we might change things and, God willing, make life better for someone.

And besides it’s still available, and still – on the first site - beguilingly, free!

So, what would I do with a castle? This castle in particular, because it is the one I have “chosen” and pictured people inhabiting.

Well, let’s face it, it would make a perfect Retreat. But, rather than giving it straight to the Church, what I would love to do first would be to turn it into a Residential Home. For, not only people with MS but anyone physically disabled. If that’s practical.

We’d have to have a lift installed to reach every floor, and special bathrooms with walk-in showers and so on; hoists and what-have-you for those that needed them and perhaps a gym with gentle exercising equipment. Oh, and, of course, a pool - outdoor probably, there’s plenty of room. Next to the al fresco area where we’ll eat outside during the long summer days and share vino in the sunset evenings.

There would be nurses in abundance and lots of assistants (aka “carers”!), at least one for each resident.

And we would have tutors coming in, and an art room, and everyone would be encouraged to make the most of their talents. How could they fail to be inspired when looking down from their hill, all they could see, all around, would be the heaven-sent beauty of the Umbrian countryside? Oh, I think the art-work created here would say it all. What an investment!

Ah, and maybe I forgot to mention it because it’s so obvious to me: my absolute prime task? To renovate that fabulous, little chapel. [Ed.: sadly, the chapel not so obvious in Tom’s picture!]

And find a lovely, local priest to celebrate Mass.

Ho ho, Lucy and I are ready to move in. I know Tom and his friends will help.

All we need now is an altruistic billionaire to share the vision and we’re home.

P.S. If it really isn’t a practical idea for the physically disabled, then I think I would start a Retreat. For anyone in need of some quiet time with God.

Sunday, 1 June 2008

It never rains...

…but it pours!

On everyone. Sooner or later, able-bodied, disabled, at some point the skys will open and down it will come: the torrential downpour. Unceasing.

Or so it seems, when the trouble starts!

I don’t know if it’s stopped now. There appears to be a break in the clouds and I can’t hear that silent hum of the liquid shroud between Heaven and earth. If I open the curtains – which I won’t, it takes too much energy! – I might see the birds skipping around gathering worms; I might notice a puddle evaporating in the mid-day sun.

But I’m wet and cold. Sodden from too many things going wrong, one after another, too long. And I’m exhausted. It’s going to take a while – and a lot of good things happening (?!) – to put even a glimmer of hope back into my milieu. I won’t look for morsels yet!


The next thing to dampen my, already flagging, spirits (after Tom’s departure and last speaking to you) was that my lap-top died!

Can you imagine? First my son and virtual carer deserts me for healthier pastures, and then my virtual friends (you!) just vanish from my black-box cyber-world. Suddenly. As if slamming doors in my face. It was horrible. And, but for the Good Lord above and dear, little Lucy, I’d have felt totally bereft. Agh!

And then followed at least three weeks of me (a technologically incompetent MSer) trying to learn as much as I needed (but lots more!) about how computers work, especially lap-tops, and what made the Internet tick.

Oh hell, it drained me. Talk about stressful! (I expect a few of you know what I’m talking about!)

But I got there. I got there – by myself. With only a little bit of physical help – when he was here and I could get him to – from Tom.

And I’m proud of myself – thank you, God! – because Tom would have had me saving up for a new lap-top, but I already had an old IBM ThinkPad in the other room (now Lucy’s bedroom) which I hadn’t used as it wasn’t wireless-friendly without an ethernet cable. Well, I loved that ThimkPad, even in the days I only used Word. So I thought about it. And I Googled (with a bit of fiddling and patience I could, for short periods, use the now-defunct one). And, I spoke to the BT Yahoo technicians in India and heard about RAMs and memory and Yahoo Toolbar, etc.. And, sure enough, there it was, I’d found the answer: use an ethernet cable with a load more RAMs!… More Googling (research!) and after a nice man in America showed me (video!) how to install more memory, and where to get it, became my life-line – and saved me! Suddenly it was all systems go – again.

Well nearly. There were all the loose ends – like passwords to be re-set and millions of Windows updates to go in and Yahoo Toolbar and Bookmarks to break-down about. I’d become obsessed (while, at the same time, quite knowledgeable – comparitively!) but it was done. Now I just had to stop being nervous of it going wrong again, thaw out and REST!

Ah-ha but the downpour was relentless.

All the time (not helped by stress, of course) my MS symptoms were worsening. My legs were (are) in agony and I was being left alone far more than I had been before Tom went. He still came/comes to help, morning and evening. And he stays nearly half the nights of the week. But: what was/am I going to do about “care”? Who was/is going to look after me/Lucy? These questions won’t go away and are giving me, nearly, sleepless nights, causing some panic breathing problems and driving me mad! How can you make a decision you don’t want to make? I just keep on prevaricating, keep on rebelling and, by the grace of God – so far – keep on keeping on.

And looking for distractions!

[Oh, and I suppose I should mention here, that a woman from a live-in care agency did come somewhere amidst all that mayhem to do an assessment. But, just like my MS nurse, all she kept saying was: “You’re very thin.” To which I’m supposed to say what? “You’re very fat!” “I’m sorry if it makes you uncomfortable (the latter has used the “painfully” adverb). In the event, I gave my usual, annoyed, retort: “So?” And proceeded to explain I was also: very strong (!); very well apart from MS (never get colds, etc.!); only going to use herbs, anyway, if I did have cancer or something; easier to pick up if I fall, and, most of all, not bothered! It was awful. I don’t want to talk about it. And, so far (social worker had one more week’s holiday and I haven’t done anything) no one has followed anything up. Basta! (‘Enough!’ in Italian. I probably don’t need to tell you that any more - I’m always using it!)]

Distractions (and who can blame me?)…

I wanted to write but wasn’t quite ready (I thought) to take on Blogger. My head was full of technical stuff, and even though I could see I could really get into it, empathised with the enthusiasm of Bill Gates, Google and co., I knew it could also make me insane. That certainly wouldn’t be my “bag”! No, I was put here to write. I went to forums.

But two things happened there over the next couple of weeks: 1) I wrote too much, especially in Writers’ Forum, which I realised later should have been here (although I love that place and have been very grateful to them for existing), and 2) I fell in love!

No. Not really. Well, yes. But…

Oh, I can see what happened. Tom had gone, no other family members (well, dear Blob tries!) were getting in touch; friends I might have had I hadn’t encouraged so were long ago invisible, and I was feeling unloved and uncared for. (It’s a dichotomy – and an irony: I have always wanted to be alone to write but now that the MS is bad… Oh dear!). Anyway, so along comes Fred (fictional name!) from Texas (on the Catholic social networking site) and woos me with five days and nights of constant messages, emotigrams and poems, so that in the end I almost wondered if a relationship was possible.

Me! Who’d chosen to be celibate and remain so, in 1986! Ridiculous.

Plus, I was so busy returning his correspondence (he seemed to expect it, even though I’d explained about the MS and fatigue) I was neglecting everything else. It had to stop. So I stopped it – on the fifth day.

But, oh boy, I missed that warm, sunny feeling for a while afterwards!

And here I am.

But, oh wait, one more thing: Important. I nearly forgot. Something else that went wrong and froze me in my tracks. You remember the ‘fun’ piece I said I was writing ages ago? Well, it was about a castle. A particular castle. And I needed permission to show photographs and print URLs. And I didn’t get it. Hah! Well, what a surprise!

So, please forgive me, I’m going to put it in anyway, with those things taken out and a painting by Tom! It’s still fun to me but you can ignore it if you like. Probably best to do so.

Right, I think I’ve caught up now – I’ve missed you guys.

Oh no. One sad note: Len, the man next door I wrote about, died. A couple of weeks after that post. Of a stroke. Bless him. I’m glad his worries are over and he’ll be with his dear wife again. May he rest in peace.