Monday, 24 December 2007

Happy Christmas!

Hoping this message finds you well.

I hadn’t had a cough since 1994 (and we MSers know how important it is to avoid them) but the last few weeks – ah! More on that later.

And, sadly, I’m still not photogenic, nor anything like it (I leave the self-portraits to those like Herrad and Merelyme who look so good – thanks for the blogs guys).

Plus, my new digi. camera is wrapped up for Christmas (“Love, Tom”!) so I can’t even pretend I’m still covering big stories for the ‘paper (Tom took this pic. but I’m always in the background “urging” on!).

In other words, a shambles.

But the love is there. And without further ado, Tom, Lucy and I would like to wish all Travels readers a very happy Christmas (those that celebrate) and a peaceful New Year.

It rhymes, so 2008 is bound to be GREAT! Optimism abounds.

God bless you.

Love, Virginia x

Tuesday, 18 December 2007

A post about a poster

You know what, I’ve had enough of moaning about Tom. And I bet you’ve had enough of hearing it. He goes. He doesn’t go. He never goes when I tell him to. He’s halfway out the door when I beg him to stay. I’ve had it. Let him go or not. I don’t care any more (like he keeps saying he doesn’t). After this last (I’ll try!) piece about him, how’s about you and me, we just let him fade away. Disappear into the proverbial sunset. We’ll wish him well. From time to time we may hear from him But...

I decided that, rather than recount for you some of the finer points of our verbal sparrings, I would illustrate just one of the more, I say ‘duplicitous’/’cruel’, he would say ‘clever’/’amusing’, wranglings of recent weeks.

The one that, very sadly, involves a holy (T. bought it in a Church shop!) poster of the Bless├Ęd Virgin Mary.

It goes like this: sometimes – if I’ve got any energy (and as I said above, if I have, it’s usually the result of anger) - I’ll try and give as good as I get. But it’s exhausting (maybe he remembers a time I almost invited a good debate but now it’s just resentment/belligerence on his part and hardly ever “interesting”) and often I feel ill –giddy – as a consquence. And my brain stops working. So, I’ll put on a so-what air and pretend I’ve got plans anyway – it’ll be better without him.

And a couple of times I actually did make plans as to how I would utilize the “spare” (once he’s gone) bedroom. And the other week I told him.

The first, if I was well enough I’d still like (but only in theory!): I’d open a women’s only poker den. And the first person I’d invite to join would be a best friend of his who I’ve got on with when we’ve met and lives nearby! Hah! He wasn’t amused by that one. Think he took it seriously!

I love poker and at one time planned to call this blog “Poodles, Poker and Penance”, because I meant to play so much more than I do. I think it’s the perfect remedy for cognitive dysfunction, it so livens the brain. And it’s social. Not a word to say against it (never bet money at home nor on the “Tables” but, in moderation and with a healthy bank roll [i.e. no one will suffer too much if you lose] the Catholic Church sees nothing wrong with gambling* and so, of course, neither do I).

The trouble for me now is that I’ve lost my main “Heads-up” opponent: Tom. He just won’t stay up to play any more (or he’s out). I have to rely on brother Blob coming to dinner (T. cooking) and that’s not often. But it’s fun when he does and we usually play a good “mean” game (I taught Blob!) with as much bluffing as we can possibly get away with (“tight agressive” they call Tom and me!). And we all agree that whatever is said at the table (ours) stays at the table. No hard feelings! See, good sportsmanship! Great game. I love poker. More later!

So Tom took that plan seriously.

But not half as seriously as he took the second plan. Because for that one I have to be alone – and that’s what he’s planning or at least anticipating. And that hurts because I know he’s probably right. But it seems pathetic which means he thinks I’m pathetic, so I’m sort-of embarrassed, which I shouldn’t be since it’s a beautiful plan. Then I have to remind him again: there’s a difference between humility and humiliated.

And there certainly is. And I thank God (which is being humble) for my knowing that.

My second plan was to turn the room into a Marian shrine. Dedicated to our perfect Mother in Heaven, Mary. You know the kind of thing: Renaissance paintings covering the walls; statues; candles; incense, and lots of flowers. A kind-of grotto filled with light and peace and a sacred aroma.

I love that idea. Tom said he liked it too. He would “enjoy being in it” when he came to stay, which would be “often”!

Yes, well, I didn’t mention it more than a couple of times. I thought it was forgotten (I wasn’t going to invite mockery, or “convince” him I was fine about his leaving). And a few weeks went by. We were heading for Christmas. Then: “Oh,” Tom blurts out one day, “I’d better get down to the Church bookshop and get cards, an Advent Calendar...” (and then, cruel blow) “... and I thought I’d get a big poster of the Virgin Mary, you know to put on the wall there”, he waved his arm into his room.

And that was it. More pain. I was horribly confused and torn. At first I actually believed it was for him, just for half a second. And I think I started to smile. But almost at the same time, I remembered and knew what he was thinking, and was struck through the heart: he wanted to start preparing the shrine, in readiness for his departure. His absence. My physical (but for dear Lucy) aloneness. I shrieked.

And he laughed.

And I said, “No, no, no!” I said “No” to Mother Mary and what I knew was truly good and beautiful. He just thought I was gullible and kept laughing.

And went to “the shop”, even visited the Chapel with one of the sisters, and came back with a pile of treasures and wanted me to be grateful and pleased.

But, hidden at first, he showed me later, was a fabulous poster...

I leave the rest to you, friends!

* Catechism of the Catholic Church (CCC) # 2413

P.S. I really would welcome your comments. But before you all rush to defend Tom and push him out the door, let me just say: I’m not a bad person, or selfish or spoiled and objectively, I see what you see – looking in. He should go, and with love, I know it.

It’s just that being taken over by progressive MS means, by definition, beng subjective: needy; demanding; scared; moody; angry, and sometimes, irrational. It’s hard to think clearly when all you can feel is fatigue and pain.

The best thing would be to find a live-in companion-carer. They could have the room. But that would have been easier at the old place – more central and close to one of the University of London’s colleges (my Alma Mater!). Here is not much good for anyone (including poor Tom) and, besides, I’m on benefits and Social Services don’t provide them.

Are you thinking Care Homes/Nursing Homes?

Please don't!

Oh, all right I’ll get an air-purifier (perfume allergy) and a load of carers. Thank you. I got there!

Monday, 3 December 2007

It won't get better than this!

Ah, but these are the best days of my life! Yes they are – praise God. They’re not going to get any better than they are at the moment or have been for the past few, family years. Tom, Lucy and me (“Mummy” again - to Lucy!).

But most of all, Tom, who’s been with me (bar six months, five years ago, when he shared a flat with a colleague), 27 years. Even with progressive MS (and things getting harder physically), taken one day at a time – as MSers must – every day is a day to be celebrated.

Take this moment: I am sitting in the sitting-room, post-herbs, third coffee and Hob Nobs, and Lucy is opposite me asleep in her “Igloo Bed”. All is beautifully quiet (daily Mass on EWTN ended, the TV off again); the girls upstairs not back from school at least another hour (and even they seem to have SAD, they’re so “still” at this time of year!); Tom is at work in the Herbalists and will be home this evening for our usual “banter”, dinner (always cooked by him – he’s a great cook, one day I’ll write more about that) and TV viewing – or game. And, mercifully – after the last council flat on a building-site in the middle of four main roads (with a siren-junction!) – now in this, ‘wheelchair-accessible’, council flat, off a footpath and well away from traffic. Spiders allowing (every c. flat seems to have at least one infestation: in the last it was pharaoh ants and a wasps’ nest, here it is myriad arachnids (but there’s an encouraging new spray on the market we’ve been trying...)) - horrors allowing, it is perfect for writing. So, as you see, that’s what I’m doing.

And that to me constitutes a very good day. Free to write, as much as I like, when I like and, really, for how long I like.

And, perhaps more importantly, after being on the newspaper and also realising how carefully we must guard against losing it: free to write what I like. FREEDOM OF SPEECH. The life-blood of democratic society, keeping it alive and vital.

We must maintain it.

The horrible thing (some might say) is, in order to gain this time and this “ability” to write, I had to become disabled – give up the ability to take part.

Ah, but that is why I know the MS is a gift. A grace. And I thank God.

I look up to Jesus on the Crucifix above me and see that through uniting my suffering with His I can come closer to Him. And way before I got this computer, and for years before Lucy’s arrival, I was grateful for that blessing. Through prayer and constant communion comes joy and peace.

I am thankful for this time, these “best” days of the rest of my life. Even though, of course, they are coming to an end.

Tom says he’s leaving in January! Well there’s a good Christmas present! What a jolly festivity that will be, looking forward, eagerly, to the pleasures the New Year will bring! Oh great! Can’t wait! Is this a panic? Oh yes, undoubtedly. And probably a permanent state of affairs – at least until the “affairs” are dealt with (will they ever be in this world?) – and everyone knows what they’re doing.

It’s okay: the Lord will provide. It’ll be all right. It’ll be God’s will – whatever.

But really, how miserable. the wretched boxes he’s had packed for at least a year. the reminding me constantly that I will be alone (well, humanly maybe!). I swear he just likes seeing me squirm (just because I changed his nappies? Get over it!). Anyway, I am. And that makes me angry (as do pain and emotional lability, both par for the course with MS). ‘Anger is an energy’ (Sex Pistols). Ergo, that’s how I keep going much of the time. And I hate it.

It used to be so good when we could get out together. Even in the later stages when he was pushing the wheelchair and having to load it in and out of taxis. We used to get on so well.

Whether it was dinner and trying to talk Italian (we did a couple of years’ evening classes), in Rome; steamed fish at our favourite fish & chip restaurant, or fry-up (Tom) at the local caf., we used to laugh. A lot. Even at home, at the old place where it was noisier, louder and madder. We always found the “funny” in everything.

But now it has grown so bitter. As Tom sees it, nothing but gradual decline, degenerating, not only of my physical state, but also his own. His social life (he goes out, he’s going away at the weekend!) – worse, his mental health (he says – and I can’t prove otherwise or make him change his attitude (he’s “lapsed”. I pray!)). The MS is never stable but at the best he calls it “stagnation”. He’s had enough. It wears you out. There’s no reward as in most illnesses of getting better. As I’ve mentioned before, there’s no quick end as in fatal accidents or terminal disease. No, this one just goes on and on, dragging everyone close to it (if they let it) down with it.

It’s like when I was in hospital from the windscreen accident (c. 1971) and felt for my siblings coming to visit me and having to look at my face (“bride of Frankenstein’s monster”!). Now I feel for Tom and I know he has to leave. But I wish he wouldn’t.

I can’t have carers, I’m allergic to their perfumes (MCS – Multi-Chemical Sensitivity [see ‘Environmental Illness’ in Comment Column]). Not unless I try an expensive air purifier (but I don’t like the intrusion either!). I can’t cook, clean, shower myself or Lucy. I won’t be able to look after Lucy...

One day at a time. You see, there’s no other way.

This is a good day. I haven’t tried to walk for at least two hours, I might not be able to. Lucy needs some attention and another love (don’t we all). And the girls upstairs seem to have bought a light-box (did I mention that mine has been on?!) and got lively. So it’s time to move.

And count my blessings. It won’t get better than this!