Friday, 21 September 2007

The MS Society Forum

About six months ago my fabulous son, Tom, set me up with the Internet. I guess I’d goaded him for a while over my frustrated blog ambitions. It was time. Let mother put her money where her mouth is.

And so I did – the money part anyway. Thanks to DLA (Disability Living Allowance), being housebound (no new clothes needed) and no social life, I procured the works: wireless et al.

It was hard work putting it together. A couple of times we had to call the one younger brother who still comes to see me (and have dinner), dear “Uncle” Blob. We needed his computer expertise. We thought...

But what Blob (a family nickname we can’t trace!) actually did was allow us to take a break. We couldn’t just give him work to do, we had to play hosts. We’d all moan about the computer but Tom would cook a meal, I would converse, politely (bit of an effort sometimes with fatigue and emotional lability!) and then we’d all play poker. Fun and very construcive! I wish there were more nights like these. But it didn’t move us forward very much.

I love Blob. He never talks about the MS but he’ll listen if I do, and sympathise in a non-pitying way which is perfect. And then he always encourages my writing because, having known me 40 years, he knows that writing is who I am. My raison d’etre. He knows how without it I’d be lost.

In fact there’s the yardstick: while I still at least try to write I am alive. Someone those close to me will recognise. Someone I still know is me. Without it I might be, at least mentally, dead. I may need help.

Anyway, the Internet (try to keep to the point!): in the end it really was Tom, and even me – with some help from the BT guys in New Delhi - who eventually got it (laptop plus broadband/wireless) set up and working. United with Tom’s laptop in his room. But what a headache. And the stress. I felt I lost another 10 years in the weeks it took to achieve this. The herpes had a field-day! (I hear it’s like this for most people – I’m sorry. And if you’ve got MS – or any debilitating disease - even sorrier. I thought technology was better than this – I waited till I was sure it would be!) And I hated it before I began. But then I always had. What with the addictions to surfing (and words like that), the games and the pornogaphy.

In fact, it’s only because I heard priests on EWTN (The Eternal Word Television Network) talk about downloading the Pope’s encyclicals, etc. that I decided to try at all.

And of course it’s perfectly “safe” if used wisely – and a bit craftily to avoid all the marketing disciples of Mammon.

For a couple of months I did no more than get used to things like ‘Bookmarks’ and Google and every move I made would elicit another cry of: “Tommm!” And eventually he would come, when he’d worn me out more with my shouting/panicking/crying. Oh, it wasn’t his fault. It was my silly naivety and fool-hardy optimism. Learn how to use the Internet at 54 (gone up since then!), with PPMS? Mad!

And it never would have been done without Tom.

So, bless him, thank you Tom.

And the blogs were on their way.

Except they weren’t. Because one of the things I’d put on my ‘Bookmarks’ was the MS Society and when looking up that address I discovered their Forum. Another round of stresses in the house: “Someone to chat to?” “Nice large print?” “Important info.?” I had to be registered.

And next thing I know, I’m on it. (You’ll think I’m spoilt! Maybe I am.) First reading, to get used to its house-style, etc. and then chatting/writing. And I was hooked. Addicted. I was a computer addict. I couldn’t believe it.

But I was grateful. And still am. And I love it.

Because it got me writing again – without thinking: immediate. Just as the editor liked at the ‘paper I was on - till I had to stop the roving reporting to give way to fatigue.

Oh, it’s like the good old days. Constant and continual. Always someone there in need of support or just friendship. Helpful – to everybody.

Thank you MS Society.

You and Tom, Blob, all the MSers, this is for you.

And off we go...


There is something very special about being in an MS “bubble”.
Alone, untouched by voice or hand, or even presence of another.
Protected, enveloped, by what? By peace. There is no panic here. No stress.
Only the blessing and golden light of being alone,
yet loved, in communion with the Holy Family.
Through silence and physical solitude to feel the soul surrender its own wordless prayer.
And grace.